All About Austin

New Job!!

2011-01-31T15:00:00.000-08:00

Austin has a job! For him, it is the most ideal job he could have gotten. I struggled with not wanting any of my children to work through high school. I did and it was a lot to balance school, home life, friends, and a job. The only benefit I really saw was earning a paycheck. I had decided that I really didn't want any of my children to work until college.

As it turned out, I could not squelch Austin's desire for this job. He came home from school all excited because the library had open a position for someone to stock shelves. It begins as a volunteer position and if he continues to do well and show improvement, he will be trained to do the desk and at that point, will be a paid employee. They have said it may take up to three months to decide. He is so very excited!

Since he was very little and we had just moved to town, the library became Austin's second home. By about 4th grade, it was the only place I felt comfortable allowing him to go to on his own (we live only a few blocks from the library). He absolutely loves it there. He is also about the only child I know who has the librarian call him if she finds a new book for him. Not one that he has requested, mind you, but one that she saw that she thought he might like. This is just a perfect position for him in a place where he is comfortable and loves, with familiar people, without a lot of social interaction....in every single way, I could not have hand picked a better position for him! Best of all, he is so excited to take this job that it is unbelievable. I am so grateful to God for presenting him with this opportunity and for allowing me to get out of my own way and let him take it! I also cannot wait to see how he matures and grows through this position!

I will come back later and update on our meeting with the school about homeschooling (needless to say, it did not go well at all), but for now, this is all I have time for! Thanks for thinking about us and continuing to lift us up in prayer as we start our homeschool journey and with all the new opportunities life is bringing our way!

Homeschool Decisions

2010-12-31T08:29:00.000-08:00

So we've finally decided to homeschool Austin, the triplets, and Hannah. We're still praying about what to do with Aidan. I feel strongly that we are called to homeschool him also but have some lingering mixed feelings, so we're praying over it.

Austin has had a lot of difficulties in school as I have mentioned over and over; and we have vehemently disagreed with much of the curriculum for a LONG time, plus this year has been almost torture for him. So we are pulling him for the rest of this year on February 17. This will give me time to get our curriculum figured out, let him finish the trimester at school (this is his super easy trimester), and get all paperwork in order.

According to Iowa law, we only have to notify the school within 14 days of pulling him, but I was unsure what to really do because of his IEP. When I called his school social worker, she told me how to do it but wanted to make sure about other issues with her supervisor. When she called back, she made it very complicated (but thankfully had already spelled out how to do it easily) and now they want an IEP meeting to convince us to dual enroll him for special ed services. They are also asking for all of his mental health records and "will treat them with the utmost confidentiality." Ummm, no. Seriously?? Do they think I don't know where I live and who has access to those records? I learned my lesson long ago about that and will not do it. We'll go to their little meeting, to personally deliver all our paperwork, but that's it. His IEP has never been followed and they don't do anything for him in his class, so why bother stressing him out and leaving him there an hour a day. Kinda defeats the purpose. In addition, his IEP has been designed around organization, which they have not done since fifth grade (I cannot sing the praises of his fifth grade teacher enough - she was amazing and went well above and beyond any teacher and truly loved her job and cared deeply for Austin - it all showed and he truly thrived). His IEP is all about getting work turned in on time, preferential seating for testing, and organization. How is that going to affect him in homeschool? I'm his only teacher, this year he is my only student, I don't think he'll have an issue transitioning from one class to another physically, he gets preferential seating in our home, etc.

For now, we are taking it one trimester at a time. For Austin especially we will see if he'll be respectful and do what I ask of him before committing to next year. He also needs to be motivated enough to get work done. Conversely, he has one on one attention for now and is intelligent enough to do the work. I can tailor it to his abilities, likes, dislikes, and strengths. We will follow God's leading through all of it. He has made it very clear that this is what is His will right now for us, and I have tried for three years to ignore that - I no longer will.

This is going to be the hardest thing I have ever done and I know there will be times when I just want to give up, but I did not have children to leave them to others to raise 8+ hours a day and to teach them a cultural worldview. I strive to raise them for the Lord and I know the older they get in the public school system, the harder that is. And when we have tried to buck the system (as in pulling them from things we don't agree with), they have made it almost impossible, have made snide comments in front of my children, have gotten very upset with me (I've been called many names), and generally highly dislike me. I have also never been one of the parents that dreads breaks....I dread my children going back to school and look as forward to breaks as they do! That has to be a sign. Sending them to school has never been easy for me, I have always questioned it, and I believe that has been God urging me to do differently for their lives.

Please pray for us as we begin this journey and continue throughout our journey of homeschooling. I'm anxious in myself, but completely at peace with this decision. And am extremely realistic knowing full well that this is not going to be a cakewalk, but with God's guidance and the support of others, we can and will succeed!

Train up a child in the way he should go and when he is old, he will not depart from it.

~Proverbs 22:6

Oops

2010-10-19T13:41:00.000-07:00

Well, it appears I have been quite slacking in keeping up on here. So much has happened over the summer and everything else that life just got crazy busy and this is the first thing to slip. So, this will just be a quick catch up post and then I'll post more regularly again.

Austin and I went to the Humboldt Park district of Chicago on our Mission Trip in July. It was a very intense spiritual experience for both of us and we were amazingly blessed to be able to go. I will be posting about the mission trip on our family blog (calonderfamily.blogspot.com) very soon as a series...it is way too much to just sit and write out all at once. I think prior to now I haven't been ready to write it all and had not fully processed all that happened.

Austin did exceptionally well at fair this year. His rabbits showed very well - he got 1 red, 3 blue, and one reserve Grand Champion. In the blue building, he did amazing. His two photographs were considered for state; his consumer savvy project (homemade laundry soap) was best in show, went to state, and received a blue at state! For communication day, he did an amazing speech on autism and received excellence at the county level and was chosen to go on to State! At state, he received "merit" (levels: recognition, merit, excellence) and received a lot of great feedback. He did so well and I was so happy to see his very hard work show for him.

School has been a struggle....what's new? We are in the process of considering whether to keep him in district, homeschool, or open enroll him to Tripoli - where the triplets are. I am not pleased with the level of, frankly, ignorance in our district and the downright refusal to try to educate themselves and the constant downplaying of our concerns and the issues Austin faces as he gets older and especially as he prepares for graduation and hopefully, independence.

We just went through the most difficult thing we have ever had to do as parents....Austin was completely out of control and very rageful last weekend and became an extreme danger to himself and our entire family. We made the decision that he was at a point where he would no longer be able to stay with us and he was hospitalized. It was an awful experience that I may write more about in the coming days, but ultimately, it also left me extremely jaded about mental health care in general. He was there 5 days and then came home. He did not return to school until Monday. Things are even more rigid than they were before and we are trying to make changes that will help him in the long run.

As far as family life...we have finally received a referral for Nathanial and Ethan to be tested. We know without a shadow of a doubt that Nathanial has autism - and he is more severe than Austin. Ethan has a lot issues with aggression and anger and is exceptionally compulsive about order, cleanliness, etc. I first got the referral for Nathanial and Steve felt strongly that we needed to also have Ethan tested. I did, too, but was unsure whether it was "worth it" to fight so hard to get him tested now. After speaking with the Autism Center in Dubuque, we decided that Ethan definitely needs to be evaluated NOW, so he will be on the same day as Nathanial. The statistics alone are frightening but then you add the behaviors and it just isn't something we feel can "wait" any longer. Statistically speaking, when one sibling is on the spectrum, the chance of another also being on the spectrum is 60%. In the case of multiples - without anyone outside the "group" - if one is on the spectrum, the others have a 90% chance. When you jump to identical siblings (as Ethan and Thano are), the chance jumps to 98%. 98%!!! That was all we needed to hear to decide it needed to happen now.

Prayers as we move forward from here with Austin following the hospitalization and all that he is going through, would be greatly appreciated!

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.
~Deuteronomy 31:6

Mission Trip

2010-07-10T09:34:00.000-07:00

Tomorrow morning, at 6 am, Austin and I are embarking on a mission trip with 10 other youth and 2 other adults (our pastor and youth pastor) from our community. We are going to Chicago and staying at the Dream Center. We will be doing neighbor restoration projects (painting, removing graffiti, mowing lawns, etc.), street drama, street evangelism in downtown Chicago, and other activities. We would greatly appreciate all prayers for travel mercies, safety while there, and that people we meet would see Christ through us and long to seek a relationship with Him. We will be gone through next Saturday (July 17).

Letting Go

2010-03-05T08:13:00.000-08:00

Letting go is so hard to do...especially when all you want to ever do is protect your children from any harm that might come to them. However, I am discovering that the more I swoop in and save Austin, the more the school believes he has absolutely no issues with anything and I'm just overbearing. So I am now practicing letting go...and it is killing me. God has provided me a few situations in which to test this new patience and theory in just a couple of weeks.

Austin is in the musical - with a speaking part again this year - and he brought home his practice schedule a month ago. I wrote down every day that he needs to be there for practice in my schedule book, like I always do, to avoid scheduling conflicts and as reminders for me to remind him. Well, first day of his practice and he comes home at his regular time. He started to give me some cockamamie story about why he wasn't there, but when I pushed him, he said he was halfway home on the bus before he remembered. Huh...imagine that. Out of thirteen practices, he has made it to one...and it was the wrong one! Does the school get it now??? I doubt it.

We've also once again been having issues with bullies. Austin is in a different class this year for literature and has some of the bullies in his class. He's not used to being with this group of kids in a classroom (since 5th grade) and they have taken advantage of having him in a classroom to torment him. One keeps telling the teacher that Austin is "poking" him. The teacher believes him and has threatened detention. Thankfully, he hasn't gotten one yet. The difficult part of this comes in knowing whether or not Austin actually is "poking" him. I'm not convinced he's actually poking him, but I'm also not convinced his isn't touching him altogehter. Austin does a lot of hand flapping and fidgeting and never knows when he is doing it, so he very well might be touching the kid as he walks by him. I'm not calling the school, though, and I'm letting him battle this himself...and it is so hard!

Also this week I discovered that Austin has not been attending ECLIPSE (TAG) at all this year. Last year, he was in a literature class (that switch again) with a couple of other ECLIPSE students, who would remind him he needed to go to ECLIPSE. This year, because of "scheduling" (or so they claim), he is in the low-level lit class (REDICULOUS, let me tell you!!! but that's a WHOLE other post!) so obviously none of the other ECLIPSE students are in his class. Which leads to Austin being completely responsible alone for getting to ECLIPSE. And, that, obviously, translates into him not attending AT ALL. Would the ECLIPSE teacher remind Austin about getting there?? Obviously not. They, once again, believe that this is a "responsibility" issue; a "maturity" issue; etc. and he just simply does not want to be there. Is that seriously meeting the needs of the child? I think not.

I am trying, so hard, to not break down and call the school and let Austin fight his own battles...as much to let them SEE how bad it is so that he actually can get the help he deserves. I hate that teachers call parents like me "helicopter parents" when they do NOT understand WHY I have to be a 'helicopter parent.' Let them have a student with a high IQ and a disability and maybe then they will understand. They do not see that for my NT 6 year old I do not helicopter parent. They do not see that our NT 6 year old takes the lunch money to school for both of them....because I know it will get there when I give it to him. I haven't had to remind Aidan once when Good News is, after the first three weeks, because he just knew on Thursdays, this is where I go. Austin was reminded every single Thursday for six years by me and friends that he needed to get to Good News on Thursdays. So is all of this truly a responsibility issue....or is, perhaps, it much deeper and a disability issue???

Letting go is soooo much easier in theory, in thought, and in decision than in actual action!
{And, yes, if you are wondering, I do plan on bringing all of this up at the next IEP meeting, plus I will be bringing up the TAG issue at conferences next week. I'm only "letting go" to a point....not totally. And if that makes me a "helicopter parent," so be it!}

Dishes with Austin

2010-02-22T07:05:00.000-08:00

Has your [wedding] ring ever fallen down the drain like dad's?

Why do you like the water so hot?

What time is it?

Why don't you put in more soap?

What if my towel gets too wet?

Why are you swishing the water like that?

Did you know...a long time ago ladies used to drip dry their laundry?

I wonder why the dishwasher gets stuff on the dishes sometimes?

Why do we have to do all these dishes by hand?

What time is it?

We don't have much time left.

Why do you put all the silverware in the sink?

Why do you put the knives in?

What time is it?

Did you know...if you leave a room for five minutes, it's cheaper to leave the lights on than to turn them off and back on again when you come back in?

You might cut yourself if you leave those knives in there.

How long is this going to take?

Why is your [wedding] ring tight?

Looks tight to me.

I don't know how it slips off if it's tight.

What time is it?

Why did you like that ring?

We don't have much time left.

My towel's really wet.

Did you know...most people in my class don't know who Alexander Graham Bell is?

Why don't you use the brush?

Did you know...I can get this stuff off the floor, too, with your scraper.

What time is it?

I like doing silverware 'cuz I can just throw it in the drawer.

I'm gonna separate it later.

Don't you have to go pretty soon?

Did you know most people don't compost?

You should get those knives out before you cut yourself.

Why is the water cold?

What time is it?

Did you know you can recycle that lid?

Why doesn't cold water get stuff clean?

Are we done now?

Did you know your not supposed to put knives with wooden handles in the dishwasher?

Why do you have to do the floor, too?

What time is it?

Issues and Dr. Phil

2009-12-11T07:02:00.000-08:00

You know, I never really watch Dr. Phil. Mostly, I don't have time...I used to enjoy it, but then as my time got more precious, I realized I didn't really enjoy it as much as I thought I did, I just wanted a time filler. Well, plenty of those now! But this week, Dr. Phil had something on about "difficult children" (I don't remember how he labeled it), we were snowed in, and Steve was home early so we turned it on. In all fairness, my "distractions" (aka - our other children) were all getting very rowdy and we were unable to watch the entire thing, but I did DVR it. At this point, I am way too frustrated with Dr. Phil to even consider watching the rest of it.

He starts with audio of a child screaming...and maybe to most people, it sounded like a young child screaming, but I knew it wasn't. For those screams were very familiar to us. Then he shows you video and, I must say, while it was like watching our very own life unfold on national TV with a different family (the words were exactly what is said in our house, as was the daughter's reactions), it was also relatively calm and much less violent than Austin can get. Then, you learn that the young lady in the video is 13 and bipolar. Scary how very similar they are. Yet, she isn't also afflicted with Asperger's. Really puts things into perspective when you realize how much these two things affect each other and Austin's ability to just live and enjoy life. Because he's not right now....not at all.

Now, the young lady was not near as violent as Austin gets nor as loud and yet she was in residential treatment for three years! This is something that we have been struggling with and very seriously considering lately. People who only know the surface stuff (which honestly is about all anyone really knows - this blog is as close as I get to putting it ALL out there and I still don't put it ALL out there all the time) argue with us about all the reasons not to figure out some longer-term placement for Austin. They do not understand what it is like. Austin is to the point where if you ask him to do anything to help out, it sends him into a fit of rage for a minimum of an hour. Sometimes, it ends sooner and he helps out. Sometimes he does a fantastic job helping out. Other times, we spend hours restraining him on the couch or in his room while he screams and rages and carries on hour after hour. He swears at us, spits in Steve's face (since he is the one who has to hold him down so Austin doesn't seriously injure himself), growls at us, screams obscenities at us, and acts like a maniac. When he is totally done and spent (which can literally take 4 hours), then he either goes about his business acting like nothing happened (with no apology) or he asks to go to bed because he is just exhausted. No kidding.

I am done and as a mother, that breaks my heart. I feel like I can't do this anymore. I feel like all of my reserves have been depleted and there simply is no more to give. Steve is not quite there yet. When he gets there, I do not know what to do. We can't live like this forever, and yet, we have no idea what Austin really needs. Does he really need something as severe as residential treatment?? Does he need to be hospitalized?? Do we just continue what we are doing and pray for a miracle (which I have done).

I watch as five other children who need us as much are being ignored during these tyrads and unfortunately, they have so become the norm, that they really don't even affect them. It is not fair that they have to watch this and live through this. I watch as Aidan is getting more and more aggressive and acting out because he isn't getting the attention he deserves and he is learning these behaviors from Austin (he literally growled at me in church last Sunday because he didn't want to stay until he was dismissed for children's church and it was the exact same growl as Austin gives). Aidan is the most docile child and to see this affecting him to this degree is heartbreaking.

I worry about Nathanial....in several years, is he going to go through these exact same things? How do I change it so that he doesn't? What do I do to make it easier for Austin and Nathanial?? I have no answers anymore. I just don't know what to do. And people who are not living in this situation day in and day out, no matter how educated on it they may be, have no idea what it is like to live this.

Austin told me something very scary the other day when he was asked about remorse (during a relatively calm time). He feels none. He is not sorry for what he does, for his behavior, for the way he makes others feel, nothing. He totally does not understand remorse at all. Hearing that come out of his mouth in a monotone, matter of fact voice sent chills down my spine. If he has no remorse, then what do we do???? How do you teach someone that?? Is it even possible??? What does his future hold if he never has any remorse?? Why force him to apologize if it isn't teaching him anything and he truly doesn't feel it? It scares me to think about that.

And that brings me back to Dr. Phil. I was hoping for hope....for answers....for something to give us a little light at the end of the tunnel. Instead, I get a bunch of drivel about how awful it is to "label" children and how you need to "focus on the positive." How if you label a child, then they live up to the label and not their "full potential." OK...seriously??!??!!! So, if you don't label the child, then all the behaviors and issues, and even gifts, that that particular label gives that child are just gone? They no longer struggle with everything that goes with it??? They no longer have tyrads, meltdowns, emotional difficulties, struggles in school, difficulties socially??? REALLY?? WHAT are you thinking, Dr. Phil???? A label gives us an answer. A label helps us to better understand our child. No parent ever wants to label their child and all parents struggle with it once their child is labeled. So making parents feel worse about the decision to seek treatment and help for their child - with the assistance of labels to help us understand it isn't all in our parenting - is not going to help any of the millions of parents out there struggling to understand and help their child. You just made them feel worse. Thankfully, I can pretty much ignore it and move on, realizing this is one man's thoughts, but there are millions of people out there who are much worse off after watching that show. People who are parents themselves, both who have sought labels and who are putting it off; people who are loved ones of children with a label; people who know nothing about labels and disabilities and now are even more dangerous in their ignorance (if a doctor, goodness a psychologist, says it's bad, then we better not do it!!); people who maybe would have been helpful and now just look on with disdain because they have no idea what is really going on behind closed doors. If I weren't more sure of the need for labels then I would be one of them. I would be questioning everything. And that, Dr. Phil, is not very helpful at all and actually, I believe, quite dangerous.

What is going on???

2009-11-30T10:00:00.000-08:00

The school finally did something about all the bullying issues and gave Austin a "restraining order" that the two boys who were being cruel had to stay 40 feet away from him at all times, until they could "get along." Yeah, well, he's been on and off "getting along" with this child for the last eight years....I told him to just forget it with them because it does not work. I was proud of him, though, because he was given the option of if he wanted them to be given a detention for the bullying or the restraining order. I still cannot fathom why in the world they were not given a detention and be told they could not go near Austin, but I was proud of Austin for choosing the longer-range plan. At least that may stop it. He hasn't complained about them since it was put in place, so that is good.

On a side note, Austin is home, again, today from school. He came in this morning and said he was not feeling well and dizzy and could he please stay home. I made him go. I told him he had to try to get to school and get through the day. Right about 9:10, par for the course, he called and said he was too sick to say. I need to figure out what is going on and he is not talking....just claiming he "really is sick."

We really need to find him a new psychologist to see. If you are in the Waterloo/Cedar Falls area and have any recommendations, we would love to hear them! We found an excellent one, but he is being deployed to Iraq, so is no longer taking new patients. Then we found another excellent one, but he does not take insurance, just charges a flat fee. We are still looking, but it is time to just pick one and pray that he is good.

The holiday season is upon us and that means lots of extra anxiety and stress for Austin as schedules are jumbled and life just gets crazy. Thankfully, we do not have to go anywhere on Christmas Day. It is always nice to be able to stay home and relax as a family with nowhere to go that day! I love when the day is stress-free and we are able to just enjoy each other with no pressures!!

SO FRUSTRATED!!

2009-11-18T13:56:00.000-08:00

Last Thursday, Austin came home very upset after school because someone at school had attacked another child on the bus before the bus driver got on. I am not sure how vicious of an attack it was (he upsets easily) but we talked about it and I told him to tell an adult at school about it. He came home Friday and said he had spoken with the guidance counselor.

Then Austin was home on Monday saying he was sick (throwing up) and on Tuesday he came home after being in school for 30 minutes with an "ear ache." I knew then that Monday was not a physical illness, but something more was going on and I had a pretty good feeling it had to do with Thursday. As soon as I got home, I sat him down and we had a chat.

Apparently, the two boys involved in the disagreement were angry they had gotten told on and threatened to attack Austin after school by the golf course when he was walking home the next time he walks home.

I called the school immediately and spoke with the principal who had "no idea" anything had happened on the bus at all....the guidance counselor had never told her Austin's concerns. And, as far as the allegations for Austin, the school is "unable to do anything about anything that happens off school grounds but we (Steve, Austin, and I) can call the police." She said she would speak to the two boys involved, though, as an appeasement to me. Apparently, when they said this stuff on the bus, that is also not considered school grounds, so there isn't much she can do about it.

These two boys then decided to tell the principal that all they did is call Austin "stupid," which apparently is not bullying by our principal's standards. So, they were given a talking to about perceived threats and how that is just not very polite. Apparently telling someone the how, when, where, and why of an attack is not longer an actual threat....it's just a perceived one. And a percieved threat is not worthy of a detention or any other kind of discipline.

After all this, being informed that a child was not at school one day and went home after half an hour the next day due to anxiety about what is going to happen, they didn't even bother wasting any time speaking to Austin. NOONE. Not the guidance counselor and not the principal. Wouldn't you think this would fall under the guidance counselor's area of expertise??? I would....but again, I'm obviously wrong.

All this from a district who readily hands out detention after detention after detention for 3 late assignments, but when it actually comes to bullying (don't ask about the bullying policy - it's a freaking joke!!!!) they do nothing. Nada. Zilch.

I've tried talking to the principal and that got me nowhere. I've tried talking to the guidance counselor on different occasions and that has gotten me nowhere. I've spoken with the superintendent on numerous occasions asking for him to attend meetings or whatever else and that has gotten me nowhere. I've tried talking to the school board (e-mailed each one individually) about a different problem with our schools and gotten nowhere....where do you go from here??? I seriously do not know where to go. I do know that if there is another threat, a scratch on my child's body, a hair out of place on his head, so help me, I will slap them with a lawsuit and will get the police involved.

We seriously wonder why children commit suicide after incidents online or through text messages or e-mail. We recognize cyber-bullying to some degree, but when it really comes right down to it, we do nothing about it on a larger scale. I am so sick and tired of this. Yes, I am totally aware that having Asperger's increases a person's chances for bullying exponentially, but I am not willing to allow that to be another child's scapegoat. That, to me, is exactly why administration, teachers, and guidance counselors need to get involved immediately when there are threats.

Let's stop pussy-footing around and do something about bullying. No feel-good policy that isn't really in place to help a child, but a real anti-bullying policy. One that might actually put fear into a bully's heart that if they do something, there will be consequences...one that might make someone think before doing something to another child.

FINALLY...

2009-10-27T14:41:00.000-07:00

Finally, Austin has an IEP. After eight years of fighting for one and absolutely no progress through the 504, they have decided that the 504 wasn't working. However, they still wanted to know if we should just continue that route and see what would happen. The director of special education, our parent advocate, and Steve and I all said he needed an IEP. It was still not an easy process and {very} emotional and stressful.

First, we went through the findings of the evaluations and testing he went through. Austin is functioning, in his best area, at a 5 year, 4 month old level...his BEST area (other than academically of course). According to the interview with Steve, Austin, and I his adaptive behavior was 5y, 4m for expressive communication; 3y, 5m for personal and daily living skills; 1y, 7m for interpersonal relationship skills; 2y,11m for play and leisure skills; and 4y, 7m for coping skills. The teachers did their own version, and they came up with less than 3 years. The teachers who have been telling us over and over and over and over for the last three years (heavily and many years prior to that) that there is NOTHING wrong with our child; it's bad parenting; he isn't really autistic (yeah, we paid several different people - five in total - just to lie to us and give us that diagnosis after five years of a misdiagnosis). So while I was still trying to digest all this and not start sobbing right there (I mean, I knew he was bad, I just didn't quite expect that!), the special education teacher starts attacking me.

He laid into me that I was putting Austin in a box; I was "limiting Austin"; I was very negative; I had no hope for Austin; I had no expectations; and the kicker of all....I don't advocate for him. WHAT?!?!?!?!!!! We wouldn't even BE there if it wasn't for my advocating for my son!! The school was certainly never going to agree to an IEP. The teachers were never going to see the need. Someone had to start this process...who did he think that was??? Santa Claus?? I mean, seriously! I was so angry. And he kept harping and harping that I never see the good in Austin and I just always see the negative (this is his second meeting he's sat in on, so of course he is an expert on me). Yeah, well, buddy, we are at an IEP meeting and that doesn't really seem conducive to speaking about how great and wonderful Austin is. I know Austin is smart. I know he has great qualities. He has a lot. I have been so flipping positive that if you asked Austin directly what his mother believed it was that he could seriously eclipse the moon himself some day if he truly wanted to and tried hard enough. I have worked so hard to help Austin only see the positive in Autism that he rarely sees the negative and when I do point out the negative and hard parts of it, it is difficult for me.

He is not the one that has to prepare for Austin's future - certainly not to the level that I have to. So he is given the luxury of being able to only see the positive in Austin. I could only dream of being able to do that! But unfortunately, in my world, I have to see reality. And the reality is that there is a very real possibility that no matter what I do, no matter how much I teach him, no matter how hard I try, he may never live totally independently. And for my own emotional, physical, mental, and yes, financial health, I have to prepare for the eventuality that he may never live 100% alone. We've been told he won't. Do I believe that....yes. Do I want to believe that...no. Do I only believe that??? Absolutely not. For the next five years, I will do every single possible thing that I can humanly do - and pray for the rest - that Austin will someday be totally be independent; while also preparing that maybe he won't. I will prepare him for a four year college while living in a dorm...while also talking to him about community college and living at home. And a four year, also while living at home. These are discussions we have already had with him. Seriously...how many parents of 8th grade 14 year olds can honestly say they talk often about college?? How many actually have to??? Not many. But we do. And he knows his options. And, quite frankly, he isn't aware that living at home beyond his secondary education is even an option to him (and technically, it isn't...we would build on for him to have his own apartment).

So next time someone accuses me of not being positive, I would invite him/her to live one day in my shoes. They might see how very positive I am in light of the circumstances. And they also might get a tiny glimpse of how very stressful and emotional a day in our lives can be.

WooHoo!!!!!

2009-09-11T11:31:00.000-07:00

FINALLY!!!

We had a meeting at the school about Austin and contacted an advocate to be there for Steve and I. When I called her, she was quite appalled at how we've been treated and what has been going on for so long. She volunteered to be at the meeting, even though I was just calling her for pointers on what to do to get them to listen. So, on the day of the meeting, she met with us before hand for lunch, to learn more, and to develop a plan. Prior to our actual meeting, she also made sure that the correct people would be at the meeting so we didn't waste time.

The meeting was at times, looking back, comical. They were so adamant that nothing was wrong with him and proved how much they do not know when she had each teacher bring in his GRADES. Seriously??? That's what she thought this was about? I think not. The first problem was when I asked how many assignments he was late on at that time (two weeks into school). He had NINE late assignments. REALLY??? Interesting, because the 504 clearly states that I receive a call after the first missed assignment and I had only heard from one class after two assignments....the one in which Austin called home (which was not supposed to happen, but of course, the vehemently defended themselves during the meeting). The principal also decided to argue with me about Austin's level of ability. I put him at about a second grade level. She argued with me and then PROVED my point by pointing out that even her second grader can get homework home and finished. When I said "Exactly...so maybe I'm estimating too high???," she didn't quite know how to respond to that. Everything that was said by teachers and the administration (which included only the principal - of course the superintendent had better things to do) just reiterated our point that Austin needs much more structure and intervention than they are giving us right now.

The Sector Coordinator for the AEA then railroaded through on the IDEA eligibility and said it was time to get it done. Yay!!!!! Exactly what we wanted. Technically, they have sixty days to complete their evaluations and then they set up a meeting with us and do everything. However, she said they have sat on it for far too long and the meeting is scheduled for October 15. They must have everything done and ready by that date. Yes!!! No more procrastinating, no more excuses...just GET IT DONE!

They also refused to re-write the 504 because by then the general education teachers were gone and the principal made up some story about not being able to do it without them present. Interesting, because we have written two of them without any teachers present. Which also means that they, of course, have still not re-written it and we still do not have a copy of it, over a week later. I am SO DONE with this school it is just not even a little bit funny. I had told Steve that I was seriously was considering homeschooling, but he's afraid of what will happen so has said no. We will wait and see what happens with the IEP process and I am not giving them much more time to screw around.

Austin was tested yesterday for his math abilities. I had asked that that be looked into through this process and he said that Mrs. B (school psychologist) came in and gave him a whole bunch of math problems. I personally cannot believe they refused to test him sooner, but at least that's getting done now. I really think there is something there, but we will find out in a few weeks for sure.

On a side note, we had speech and development therapy for the triplets this morning. We decided last month to get the school psychologist in here to observe Nathanial. She was here and she believes that he needs a little more observation, she saw lots of concerning things, and she is coming back again next month. She really believes he probably has PDD of some sort and is strongly leaning towards Asperger's. I'm not sure what to think just yet, but at least if I have two children on the spectrum, I'll be a better advocate for Nathanial by the time he gets there, and he will already have an IEP because they're writing one for all three in February.

Beyond Angry

2009-08-26T07:07:00.000-07:00

So I should be used to this by now, right?? I mean, we've been dealing with this fricken school district for nine years now and they haven't done anything thus far to meet Austin's needs and/or follow his flipping 504, so why do I always get my hopes up that someday they will? In said nine years, Austin has had two excellent teachers, so I really can't count those two years, plus another couple that were great for him and awesome teachers, but didn't do anything for him. To be fair, one was prior to diagnosis and the other he had the year he was diagnosed. However, one of his excellent teachers that met his needs was also prior to diagnosis. Anyway, I'm rambling about things that do not matter today.

Austin has a 504. He received this 504 last year. The school did not follow the 504 last year, either. We tweaked it at the end of the year and thought it would work. One thing we fought for was a PDA for Austin, along with his assignment notebook. We got the PDA thankfully. Austin is able to put all his assignment into the PDA and then have his teachers look at it and make sure that it is written correctly. Then his assignment notebook is supposed to also be filled in by his teacher(but somehow this didn't make it into the 504, so now they "don't have to" do that). Then he is supposed to have his last period teacher (art teacher) go through everything and through his book to be sure that everything that is supposed to get home, does. And that his homework is IN his bookbag.

So I get a call today, on day 7 of the school year, that he is two assignments behind in one class, plus one in three other classes. The call was from Austin. His 504 says a teacher will call after the first missed assignment....NOT Austin and not after TWO missed assignments. The other three assignments he just offered up when asked...NOT the teachers. I see all sorts of problems with this, being as all of it is directly related to his 504. When I asked to speak to the principal, she was "unavailable." When I asked to speak to the guidance counselor, she also was, you guessed it, "unavailable." Now, tell me, WHY do you have a student in trouble call home, but noone in authority can speak with the parent about it. And, obviously, the teacher was "unavailable" because she was, well, teaching. So I didn't get to speak with anyone about it...just "wanted to let ya know."

This is also not the first contact we've had this year already. I already had problems after the very first day of school due to all this. And, of course, that was met with an e-mail about how wonderful they are and how they are meeting all his needs and I'm just "expecting too much" out of the district.

He can't have an IEP because he is "too intelligent." He can't be in the resource room because they believe 100% in "least restrictive environment." He can't have a special education teacher go through his assignments and bookbag with him, because he doesn't have access to that teacher, because he is too smart and does FINE being mainstreamed.

REALLY?!?!!?!???? How so???? Tell me, please....enlighten me with this knowledge, because I ain't seeing it. Fine, he's smart...I'll concede on that point. But in every other way he is failing. Physically, socially, emotionally...everything. So, how, exactly, does that scream success to them???? Why are we only looking at the intellectual side? Oh....that's right. Because if he is doing well academically, it makes the school look good. And the school doesn't have to live with Austin. The school doesn't have to see Austin's entire person change when he thinks about the fact that he has no friends. The school doesn't see that he can't even open a can. It's not the school's problem that, in all likelihood, he will never live alone. It's not the school's problem that he cannot function because they only have to deal with him for another nine months at that particular school and four years at the high school. Which, if you are wondering, is another reason I was given for not helping Austin. They are "readying him for high school." Really?? The high school doesn't have a resource room??? The high school doesn't have special education teachers??? The high school doesn't have any special needs students?? Fascinating. Well it must be only my child they are totally disregarding then.

Oh, and will they talk to me about any of this...or believe that I honestly know what's best for my child?? Nope. For some reason, they have the impression that Steve and I are on totally different pages (when in actuality, we are on exactly the same page and the only difference is I want to hire an attorney now and Steve would like to give the school some more time) and this means they only take Steve seriously. I am just the one who "flys off the handle." If ANY of these people had a special needs child, much less a special needs child who is not getting their needs met, maybe, just maybe, they would understand the emotion and dedication involved. We are Austin's only advocates in this world. Noone else lives with him. Noone else feels what we feel. Nooone else sees what we see. We are the ones with the vested interest in Austin. We are the ones who want to see Austin succeed to the best of his ability.

"Come to me all you who are weary and burdened and I will give you rest."

~Matthew 11:28

My Song for Austin...

2009-07-13T15:52:00.000-07:00

I love, love, love this song by Sara Groves "Prayer for this Child." I never could find it anywhere, to post it on here, but I did today! Here's the video with the lyrics below. It is so perfect for him...

I do not know how I am to pray for this child
As a mother I don't want my baby denied
But in the waiting in the waiting
I learned to hold onto to the heart of God

Every instinct in me wants to shield him from pain
Take the arrows of misery, heartache and blame
But in the sorrow in the sorrow
I learned to hold on to the heart of God

I only have two eyes - be all seeing
I only have two hands - be everywhere
I do not know enough - to be all knowing
I give my baby up into Your care

I do not know how to pray for this child
I want to guard him from everything wicked and wild
But in the trial in the trial
I learned to hold on
And in the trial, in the trial
I learned to hold on to the heart of God
In the trials, you learn how to hold on to the heart of God.

Who knew??

2009-07-10T13:04:00.001-07:00

Austin had his many visits this week and they went well.

Dr. Z increased Austin's heart meds on Monday. He feels that we are not getting enough control over the SVT and it is time to increase it. So far, so good.

On Tuesday, we met with Dr. T and Dr. G. Dr. T agreed with us that it is time to "jump ship" with his one medicine and try a new one. He was having way too many side effects and it was not giving us any help with rage at all - which was it's whole purpose. He is getting enough control over his anxiety with his one med, so it's not a big deal to drop to a medicine that doesn't necessarily help with anxiety. Although the new medicine is not what Steve and I had hoped to get him on, it is one we have heard others have had success with and we are comfortable with it's choice. I about had a heart attack when I filled it at the pharmacy....this stuff is more priceless than gold!!! I didn't think we could get much more expensive than the last medicine he was on; I was proven wrong. It will take at least one month (and up to three) to know if it is helping and then we will increase the dosage from there. If it doesn't help, then we will look at other options. Although there are {many} days when I feel like I can't handle the rage one more minute, none the less another month, I am believing God to give us the strength to get through.

Dr. G is the neurologist and we met with her Tuesday afternoon. She does believe Austin is having seizures. She said they are a type that are hard to notice because they are short and just more "staring"/"inattentive" episodes. We are doing an MRI and EEG next Tuesday to find out if this is what is going on. She said they can almost always induce one during the EEG. Both tests will take a very long time to do, but at least then we will hopefully have some answers. She also would like to switch his cardiac med to a different one to deal with his migraines (which are a separate issue). This would allow him to take one medicine to control two issues. Sounded fantastic to me, so we agreed I would call the cardiologist to check and he is good with it. We will have the results of the MRI and EEG on the following Wednesday, so that is when we will discuss treatment options and whether or not we really switch the cardiac medicine.

Dr. T also wanted Austin to see a psychologist. Now, we totally agree. We were a bit burned by our last psychologist...he billed himself as a "Christian" counselor and then turned around and said that you did not necessarily have to agree that Jesus Christ died for our sins and rose from the grave, in order to get into heaven. Seriously?!?? I think not. I do not want my very literal, very impressionable, son to be seeing such a "Christian" counselor. He was also very liberal in other views and I just didn't agree with much of it. So began the search for a new counselor. Dr. T recommended one, turns out he isn't accepting new patients because he's being deployed to Iraq next month. Tried another one and he sounded absolutely perfect (full time counselor/part time Baptist pastor). Then we discovered he does not take insurance. I'm now waiting to get ahold of one other counselor...not as perfect (female for one thing), but still Christian. I'm just praying they take our insurance and understand about Aspie's. There is one more option other than them, but I'm not as sure about it. Who knew it would be so difficult to find a decent Christian counselor???

Prayers Please

2009-07-04T20:24:00.000-07:00

Austin has been having a lot of side effects from one of his medications. He overheard Steve and I discussing this and therefor, quit taking it on his own. While we really wanted to discontinue this medication, we wanted to do it in congress with his doctor, while finding alternatives. He has, therefore, been having a lot of issues with rage and is getting difficult to handle. We are meeting with his doctor and another specialist on Tuesday.

Some of the side effects he is having are blacking out, massive headaches, "twitches," many ticks, and other things. At first, we suspected he may be having seizures. We looked into that, while making an emergency appointment with his psychiatrist. Unfortunately, we met with one of her partners who seemed to have a great dislike of adolescents and was very suspicious of Austin from the get-go. I was not at all comfortable with the appointment and he was just very condescending. He was surprised that we have never met with a neurologist to rule out any other brain disorders when he was first diagnosed. Austin is such a classic case of Asperger's, though, it was never necessary. I still believe most of his early speech was echolalia and wish I had known that at the time because then we would have had a straight "classic" Autism diagnosis. Neither here nor there, he's AS through and through. I am very glad that God intervened in this situation because I have been hearing about different tests - simple tests - that map the brain and show you exactly what the AS looks like and would love to be able to have this done. He's also been suffering from headaches for a long time. Being able to be referred to a neurologist really is a blessing to us.

One of the complications is that Austin's psychiatrist is leaving and his new psychiatrist cannot get him in until September 2. We did not want to switch medications with his current doctor just because there will be no follow up with her. We now are going to be forced to look at it with her and pray he does well enough until September 2. Which, for those of us with Aspies know, is not going to be pleasant with school starting and all that entails in the middle of no/new medication.

He meets with Dr. T (psychiatrist) Tuesday morning and the neurologist Tuesday afternoon. He also meets with his cardiologist on Monday. This is going to be a long week for him, which in itself is going to need a lot of prayer to get us through! {On the plus side, we get two almost whole days with just he and I. I'm really looking forward to it!} Please also pray for direction and understanding from his psychiatrist. Steve and I have definite ideas of what medication types we would like to try for Austin and while they are not "approved" for AS, they are being used with great success for AS patients. Please pray that his rage lessons while we are waiting to try new medications and that he is able to tolerate agitations a little better. Please allow us to accept whatever treatment they decide on and help us to graciously accept the doctor's opinions. {It can be difficult at times when you know your child and feel that they really don't.}

We are also having issues with his eating disorder again. He is refusing to eat, he is losing a lot of weight (in a short time period), and he just isn't handling food issues well right now. Part of it is that the medication he is now refusing was doing double duty - anxiety/rage and appetite stimulant. Part of it is adolescents (they warned us it would get bad again at this age). Part of it is lack of control over everything else and total control over food intake. Part of it is a lot of anxiety and not knowing how else to handle it.

Lots of prayer requests tonight but I know God can handle it!

I can do all things through Christ who strengthens me.

~Philippians 4:13

Just Being [Brutally] Honest....

2009-03-24T14:57:00.001-07:00

There are days that, but by the grace of God, I have no idea how I get through with Austin. Lately, those days are coming more and more often. I have no idea what to do with him anymore. He is so aggressive and belligerent. He is constantly looking for a way to fight with us on whatever he happens to be upset about at that moment. We are having so many issues. I have seriously researched group homes for him in the last week, it has gotten that bad. He doesn't qualify because he is not in trouble with the law (praise God for that) and we probably cannot afford the treatment out of pocket - I know we can't personally, and I doubt our insurance would pay for it. Then you have the length of stay. Most say at least six months to a year. After praying on it, I honestly do not think that is the right place for Austin right now. To even be thinking about and researching it is what scares me.

I pray constantly for wisdom in what to do, but I honestly do not know anymore. Sometimes I wonder why God thinks that we are the correct parents for Austin. I feel like I fail him so often. I lose my temper and yell, when I know full well what he really needs is understanding and restraint. I fight back and get into it with a thirteen year old when I know that I need to be the adult - be the parent. It's so hard when you love your child so much and yet feel like you cannot relate at all to what they are going through. When I try to relay to him how others might feel after something happens, I feel like banging my head against a wall. He does not get it. Not at all. He cannot empathize at all and it is frustrating at first - then it's just sad. I know that it isn't his fault. Autism has robbed him of that knowledge and those feelings. How, then, do you discipline for something...when someone doesn't understand at all what feelings their actions caused???

I feel like I have to defend him to everyone else constantly, and then I can't ever be critical of him or, even at a minimum, explain my frustrations. For fear that they may see the flaws in Austin, in our parenting, in our family, in our choice to continue having more children after knowing Austin had AS. I know that it doesn't matter what others see or don't see, understand or don't understand, but the mom part of me is very hurt by that. I need to keep my mind focused on the One who does matter - and knows every part of Austin and loves him even more than I do.

To know he is "broken" and be unable to "fix" him is so difficult. Honestly, I wouldn't want to "fix" most of it, because it's what makes Austin Austin. I lean on God so much through our struggles and I know that I need to do it more. Sometimes I feel like I am just railing against God because I do not understand it. All I want is to be the best mom for Austin that I possibly can be. I know I'm not. I know I need to work on a LOT of things...but I do try.

Often, when strangers see us (or even people who know us), they tend to say that I am a "super" mom. They have no idea. I am probably not half the mom others can be and are. Some days, I give so much to Austin, everyone gets left behind and just gets the frustrated, left over mom. It's not good for Austin either. He needs me at my best all the time and lately, he rarely gets that.

So, now you know. I'm not super mom. And I am perfectly fine with that. I just pray that I can be the best mom, every day, to every single child the Lord has entrusted me with.

We Have Braces...

2009-03-18T14:13:00.000-07:00

Austin got his braces! He gagged once in the beginning, but then did really well. He said it tastes "disgusting" and he's trying to get used to the feeling of them. They gave them wax to help with the rubbing feeling and the one tooth (the reason he has the braces in the first place) will be very bothersome to him for a while, until it comes down more. He seems to be doing pretty well so far!

Responsibility

2009-02-24T08:40:00.000-08:00

I never know how much to trust Austin with and it is hard because he is 13, but he doesn't act like it or even have that maturity level. This weekend, he had a huge meltdown over an incident with someone and said he didn't understand why we didn't trust him to babysit alone, especially when he does most of the work himself anyway.

Unfortunately, he got his wish last night. Nathanial and Ethan made a treat out of Pepcid AC (you can read about that here) and had to go to the ER. With no time to think, I asked Austin to stay home with Aidan, Noah, and Hannah. It was about 5:15 and I didn't really think it would take too terribly long, so I figured he'd be OK. We had the cell phone and our neighbor is home in the evenings, so if he needed something, I knew he could ask for help there.

Not only did he do a fantastic job watching everyone, with no instructions, but he fed them and got them to bed! He called to see how everything was going and told me he was going to feed them chili (from a can) with hotdogs and pretzels. Not exactly a fantastic meal, but he had to search for this food and did a great job coming up with it himself. The chili was buried in the pantry and the hotdogs were in the deep freezer.

When we got home, he had Hannah in bed (she always takes a nap around 7 and he put her in bed for it) and Noah was sound asleep in his room.

I am really proud of him for doing so well and that he kept his cool and thought of everything he did. It's great to know that I can depend on him when I really need him.

Bullying

2009-02-11T11:51:00.000-08:00

I am sooo frustrated!!! Austin has been being bullied by several kids for the last few years. Unfortunately, he believes most of them are his friends. He doesn't understand the context or verbal inflection when they say stuff to him, so he always assumes it's nice. Such as "Are you going home to play with your legos?" And Austin assumes that means that they, also, play with Legos and they are inviting him into a conversation. I know the boys he is referring to, so I know for a fact that they are making crap out of him. Plus the fact that not many 13 year old boys play with Legos. But, again, he has no comprehension of non-verbal skills so he doesn't understand it. There have been countless examples I could give of the things kids say to him that he doesn't understand, because if you just listen to the words and take away inflection, body language, etc., it does sound nice. Ahhh!!

Then we had the whole "a girl likes you" and when he got her number, I encouraged him to call. He seemed interested and this young lady was from a different school. I thought, if you didn't know Austin, he is a pretty cute kid so I could see if you didn't know the social hierarchy of Freddy, you might honestly like him. So I talked him through what he could say to her and everything. This was the first time he seemed interested and he didn't know what to do. So we talked about it and he finally called her. Only to get made total fun of on the other line. It was the kid who told him she liked him. I know this because of what Austin said was said. Austin still doesn't believe it. Never mind that we started getting cruel prank calls right after that. Now I feel bad for encouraging him and that I wasn't there for him.

OK, so these are just a couple of examples. A few children in particular are very cruel to him. He does understand this because these kids don't even try to mask it or make it sound nice. We talked strategy last year already and decided to just ignore it. This year, it got worse, so I told him to just agree with whatever this kid is saying. In the past couple of months, probably because Austin isn't letting it get to him, it has gotten worse and physical. My immediate reaction was to call the school. However, we are in a district that just got a "bullying policy" last year and it is horrible. It isn't even one. There have to be "witnesses" to the events, or they didn't happen. So Austin begged me not to call the school and said it would only get worse if I did. Steve and I talked about it, for a long time, and decided that as long as Austin wasn't getting hurt, that we would honor his wishes and not call.

Yesterday, Austin comes home from school with his glasses destroyed. This child, ZV, smacked him on the head with a book and broke Austin's glasses. Austin said it happened in advisory and at first said his teacher saw it. When I pressed him, he said maybe Mr. S didn't see it happen. I truly hope he did not see it or I am really going to loose it. I told Austin that was it, I was calling the school.

I called. I am now more frustrated than I was even before. The principal listened to what I had to say, but I could tell she wasn't really believing what I was saying. When I said the biggest reason Austin didn't want to report it was that there were no witnesses and there had to be at least one per policy, and he was afraid it would get worse, she said that wasn't the policy. When I pressed her on it and said he has been saying that for two years and we've had personal experience with the policy from other times I have said something, she didn't say anything more. Her final answer is what (pardon me) pissed me off beyond belief. She said, and I quote, "I will sit down with the boys and try to figure out what is going on." What?!?!?!?!?!? I have never, never, known a bully to admit he was being a bully. Oh, yes, of course Mrs. G, I was smacking Austin over the head with a book. Seriously?!? She is the principal and former guidance counselor at a middle school. She honestly thinks she is going to get the truth?? I highly doubt even Austin will admit to it if he's in the presence of this other boy. I have a pair of destroyed glasses sitting on my bookshelf....what more proof does she need??? Does she really think that he did it to his own glasses? Or what?

I am soooooooooooo angry. I am so fed up with the entire school district. And not only am I angry, but beyond that, I am hurt. I am hurt that I stuck my neck out for my child and I can't even protect him. I just want to wrap him in a cocoon and get him through the next five and a half years, but I can't. I want to homeschool him, but I can't. He needs resources the school can give him that we can't. I just want this to be easier for him. This is the absolute worst feeling a mother can have. It is total helplessness and it feels awful. All you want is to protect your children and when you can't - or when you try and they don't believe even you - it's just upsetting.

Or you think that maybe someone at the school would do a little research and realize just how prevalent bullying is for AS kids. But they don't and they won't. Once in a while, you are graced with one of the best teachers you could not have even prayed for, but then it's almost worse when s/he is not there anymore because you know just how good some teachers can be. The ones who truly want to make a difference in their student's lives. Austin had that - in fifth grade. Is that going to be the last teacher who truly cared about him?? And took the time to learn about him and what made him tick? Isn't that really what all teachers are supposed to do? So we have been blessed with one awesome teacher, but will it ever happen again? I doubt it.

These are the days when I wish I could cure AS. These are the days when I wish AS happened to somebody else's child and not my child. These are the days I wish I could go to school for him and be right there the entire time to protect him. These are the days when I truly feel AS is not a blessing, but a burden. And I hate feeling that way because then I am denying who my child is and I love him so much - no matter what.

2009-02-02T11:54:00.000-08:00

Steve called to tell me about an article on CNN.com. It is a very good article, with a few problems. I was thrilled they are looking at a 13 year old with autism - not just a toddler or preschooler. Lately that seems to be where much of the focus has been and they are not the only ones whose families are suffering.

The article can be found on CNN's website. The family was exactly like ours. They tiptoe around their daughter, because of her explosions. Austin does not get as much freedom as this young lady did, but we do pay for that. He has meltdowns that are very similar and behaves similarly. I totally got the mom when she was asked if others "get it" when it comes to what it's like to live with Autism every day. She said no and I heartily agree.

I had problems with the part that talked about children with autism just needing "a good teacher." Even those of us who are good teachers for our children struggle with them. A group, Autism Partnership is providing help for the family they are spotlighting for the article. While it is great to know that there are groups out there that will come to your home, it's disheartening to learn how much it costs. Their program averages 5 days and it is $2500 per day. And you may need more days. CNN is footing the bill for this family in order to showcase it, but what about those of us who can't afford it??

Our insurance doesn't cover any therapies for Austin. We are at the mercy of the school district to provide him with what he needs, and frankly, I've lost all faith in them. OT was fabulous....but they have already cut it "because he's doing so well." Do they not realize he is doing so well because he's finally getting services???

I hope people read and watch this and realize it is real - across the spectrum - it is how kids react at this age.

What?!?!?

2009-01-16T11:54:00.000-08:00

I am posting this both on our family blog and this blog, because while it deals specifically with Asperger's and Austin, it also deals with ignorance about larger families.

For several years, Austin has worn his coat all day long at school. He refuses to take it off. I've spoken with him on several occasions about it when it first started, but then eventually gave up. Last year, because he was at a new school, I had to speak with him about it again because we got a lot of complaints about him wearing his coat all day. He still wore it. This year, there is a new guidance counselor.

When she started, I was so excited. She is fresh out of college and I thought she knew a little bit about AS. Now, I didn't expect her to be an expert, but she had heard of it and acted like she understood it. My hopes were dashed, as she may have heard about it, but understanding it is a whole other thing. She totally doesn't get it.

She has been e-mailing me for a long time and that has been good. However, as the weather got colder, I started getting e-mails about "the teachers" being concerned about Austin wearing his coat all day long and that "he might be cold" and "need more layers."

So, I decided to politely ignore the fact that most of these teachers knew Austin last year and knew that he would not take his coat off, so that didn't seem as much the point. I politely pointed out that he had on several layers under his coat (UnderArmor, a long sleeve shirt, and a hooded sweatshirt), so he was plenty warm and it was more a security/anxiety issue than anything else.

Do you know what she wrote back??? She said, and I quote, 'I'm glad to hear that he has options to wear at home and to help him with layers!' Seriously!?!?!? Like, because we have six kids, we can't possibly afford to clothe all six children and be sure they have enough options to keep them warm. What?!?! I was so offended and so angry that she ignorantly thought that we did not have enough money to afford our children.

Yes, maybe some people cannot afford all the children they have in a larger family. However, most larger families that I know, know that they can afford the children they already have and any future children they may have prior to having more children. Adding to one's family, especially a larger family, is not something taken lightly and not an accident. Everyone I know, myself included, knows they can feed and clothe all of their children in a manner which is weather-appropriate at all times. They may not be designer clothes (and sometimes they may be), but each child has what he/she needs.

In that same e-mail, she mentioned that the teachers were concerned his coat "wasn't clean." Well, I informed her I wash his coat three times a week. She was happy to hear that. I figure if I am washing the coat that often, then they really can't complain about it. It isn't dirty. So I've taken away the two reasons they want him to not wear his coat. And I've spoken with him about it. He's still wearing his coat daily and I'm fine with it. He has on layers, and it's clean - they can say nothing.

Why is a coat such a problem??? And, seriously, of all the issues we have had with him, why pick on the coat?? And if that's their only complaint right now, then we are doing MIGHTY good!!!

Dr. Theresa

2009-01-09T11:02:00.000-08:00

We had another appointment with Austin's doctor. She is just so awesome. I was really weary of taking Austin to a psychiatrist because most only spend a couple minutes with you and that's about it and we've had some awful experiences with some of them. She really sits down and spends a half hour at every visit figuring everything out.

She does feel that Austin's explosions should start to level out around 16. For most people, three years seems like a long time to wait. For me, it is a light at the end of the tunnel and something to look forward to. In the meantime, we are going to increase his Risperdal. I do not enjoy having him on this medicine, however, it makes him much easier to live with. He tends to have less explosions. He is still only on one-third the regular dose for his size (after the increase), so we feel it's a good idea to try it.

He still has his ticks, but I am just trying to learn to ignore it. His therapist had said we can't take everything from him and if this is self-soothing and actually helps, then maybe it's just time to learn to live with it.

He is still meeting with his OT at school also. It made Christmas a tiny bit easier to deal with. I don't think we had a single explosion or time that he had to leave with us carrying him out of the room this year. That makes it so much easier to go places. All of his therapists have recommended not going to family on holidays because it is just too much for him. We have decided that Christmas is just for our family and we don't go anywhere the actual day of. However, he also needs to learn to adjust to society a little bit and be a part of activities to some extent, so we do go with our families for holidays and other outings. He is just learning to use his stim-items better (compression shirts, boxer briefs, hand fidgets, brushing/joint compression).

It can be so hard to explain it to anyone and for some reason, harder to explain to family. Probably because they have known him his whole life and they love him, so it's harder to accept. My brother and I had a long discussion about some of Austin's difficulties and he was shocked that Austin had such problems with self-care. He just doesn't look or seem like he does. Which is because Steve and I help him constantly with the most basic of tasks (ie, brushing teeth and using soap and shampoo). He simply cannot do it at this stage. Michael was also surprised to learn that Steve and I have several back up plans in case Austin cannot live on his own. Or maybe he will be able to live on his own with support. We simply don't know at this point how much he'll be able to do on his own. It was hard for Michael to understand, but it was also awesome that he is in a place in his own life that we could have the discussion maturely (if that's a word??).

He saw the orthodontist and he gets his braces on in March. Pray for us!!

First Basketball Game

2008-12-16T09:22:00.000-08:00

Austin had his first basketball game, and in his words, "we dominated!" He is the official stat and score keeper, so he has a pretty big job. He said they won and it was awesome. One boy made a ton of points, almost single-handedly winning the game. It did not surprise me one bit, though. He is an extremely athletic boy. He had a lot of fun with it and I am so glad he is enjoying it as much as he is.

He had a game yesterday and he got sick at school. He waited until he was really sick to call me though because he didn't want to miss the game. He didn't make that one and he fretted the entire time.

He has another game tonight, but with the weather, I'm not sure it's going to happen. We already have at least an inch on the ground and we're supposed to get a lot more. I don't want it to happen because I worry about his safety on the way home, but I know Austin is way psyched about it. We shall see what happens.

Braces - Again

2008-11-26T19:58:00.000-08:00

We got in to see the orthodontist and it was not pleasant. Let's just say Austin will be getting his new car in his mouth instead of in our driveway. Oh. My. Word. I could not believe how much this is going to cost us! Oh, but the quote included all appointments, follow up, and retainers. Gee, thanks. It should include a slightly used, low mileage, great condition, late-model vehicle for that price! And, they have a payment plan. Nice.

Enough about the expenditure....

His mouth is a mess (big shock) and he needs "at least" two years of braces, plus probably a tooth or two pulled, which is not evidently included in our fine quote. He took molds of his teeth that day and then said he would meet with me in a few weeks to discuss the results of the molds. Once he has had a chance to "study" the molds, then he will know better exactly how to proceed. He did say he is at a perfect age to get braces, and I would agree with that. It seems that in the seventh grade there has been a sudden boom of braces and glasses. Since he's had glasses since second grade, I guess it's only natural that he would need the braces. I truly feel sorry for the young ladies who are going through both all of the sudden. How awful. At least this way, he'll be finished by the time he is roughly 15 1/2, if all things go according to plan. I had my senior pictures taken with mine still firmly in place - lucky me. On the positive side, mine were clear, so at least you had to kind of know they were there to see them. Austin's will not be.

He will not be getting them put on his pearly whites until about April or May. This is pure strategy on my part. I know they are going to irritate him no end and he will be in excruciating amounts of pain - especially at first. He has a fairly low threshold to pain (due to sensory issues) and they were not pleasant to me, who has a fairly high threshold. So I figured the closer to the end of the school year we can get, the better. That way, he will hopefully be almost out of school for the first part of it all. Plus we can get any teeth pulled that may have to go before that. His orthodontist said he wanted to start the process any time January to June, so I was happy with that.

I am so not looking forward to every aspect of this....

OT Meeting

2008-11-14T15:19:00.001-08:00

I met with Austin's occupational therapist today at the school with Austin. She is so wonderful!! She had a ton of things for Austin and a complete sensory diet. I was so excited! Austin really likes her, also, which is a huge plus.

She started with the things that Austin and I had already discussed. He brought home a brush and a therapressure band for his own use already. She was able to show me how to do it. Austin is now at an age where he can do his own brushing, which is awesome. He can also do his own joint compressions, which is helpful when I am not available to do it for him. For now, we are not doing a schedule of brushing/compressions but we will start doing that the first day of Christmas break. Throughout Christmas break, we will do a schedule of brushing and compressions every two hours, plus heavy exercise every 45 minutes. He can do all of this on his own, if I am not able to assist him.

The theraband helps him with his sensory input needs and helps him build muscle tone. I was unaware that kids with Autism have low muscle tone (the one thing I haven't ever really read about), but she said every child she has that is anywhere on the spectrum - even higher functioning than Austin - has low muscle tone.

The other thing that will help with muscle tone and core strength, which he needs, as a side benefit to giving him input is his therapy ball. This is a strictly-at-home thing that we had started a couple of years ago. However, in school, he has been given another Move and Sit. Hopefully he will actually use it this time. He tried it and immediately said he didn't really like it, but then the OT said that he could turn it over to the smooth side. Hello! He loved it then. I wish someone would have told him of that option a few years ago! He's going to try that in a class that he has two in a row in the same room and also during basketball games.

She gave him tubing for the end of his pencil for him to chew on and a putty eraser to fidget with during class. We are supposed to provide Bottle Caps for him to also chew on throughout the day.

She talked about buying him seamless socks or turning his socks inside out until we can get him seamless socks. She also said we should try UnderArmor, which is apparently very tight under garments. That would give him constant pressure. She also said to try boxer briefs so that they are tight, also.

We are supposed to always use very deep pressure when touching and hugging him (we already do). She even showed me ways to do it that are different than what we have been doing, so that was cool.

For food, we are going to try a quarter of a bagel before a meal so that he gets some heavy work prior to eating.

We talked about his engine running to fast, "draggin' butt," and just right. We are going to work on telling him in those terms where things are at and also explaining why we see it going that way.

Finally, we are working on creating a "Just Right Bag" for him at home. We will keep in it lots of hand fidgets (Tangles, MagnaDoodle, mini Etch-A-Sketch, silly putty), his theraband, his brush, and, if we purchase one, a Move and Sit. This way no matter where we go, he has lots of options for input and ways to calm himself.

For a change, I am not dreading the holidays as much. Now we have some options and very tangible things he can be doing while he is taking his time away. Maybe it won't seem like such a punishment and he will actually go on his own, or with little prompting instead of getting so overwhelmed so quickly. (Which shows up in being out of control hyper or having a meltdown or getting mouthy.)

She is coming back to see him on December 10 and then will come back again in January. At that point she'll evaluate if she comes in every month to see him or if it can go to every other month. I am so glad she spent the time getting to know Austin and really feel like this is going to be a huge improvement!

New Update Button

2008-11-11T08:07:00.000-08:00

If you wish to be informed when I update this blog, you can enter your e-mail address into the FeedBlitz box to the left. They will send you a notice when the blog is updated. I deleted the other button, so if you had subscribed under the old one, you have to re-subscribe to the new one.

How many...

2008-11-07T13:31:00.001-08:00

...thirteen year olds do you know whose librarian calls them when she finds a book she thinks they'd like??

I, personally, have never known any. That is, until today. I was feeding Hannah and the phone rang. I ran to get it before the machine picked up and it's our friendly librarian. She got a new book today and thought of Austin when she saw it. She called because she knew he'd like it and also because it is in the adult section, so she was afraid he wouldn't see it if nobody told him about it.

It is a little funny that they would call. Yes, we live in a small town, but not that small (roughly 1500). The library is a new large library and there are several librarians. It is used often and by a lot of people. So, when you think about it, it is actually rather flattering that they know what sorts of books interest Austin and that he is there enough they feel comfortable calling to let him know of ones that might interest him. I know the second he gets home and I tell him about this, he will be down there in a flash borrowing it...never mind that it's cold and snowing outside.

Today I am very proud that we have raised a reader...

Braces

2008-11-05T09:51:00.001-08:00

We finally got in to see Dr. H and the news was not good. A couple of weeks ago Austin had gums that looked like they were full of puss and really swollen. The puss went away by Monday morning and in it's place came the beginning of the tooth that has taken (no kidding) three years to come in. The gums were still swollen, but with a new tooth that's to be expected.

The problem? The tooth is coming in in the middle of his gums, not the bottom. So I called the dentist and he finally had an opening.

Six months ago, he passingly mentioned braces. Steve and I thought about it, but since it wasn't too serious, we pretty much pitched the idea. A month ago, Dr. H said he really felt Austin needed braces, but it was up to us. At that point, we all still thought it was pretty much cosmetic.

Steve and I then revisited it and decided with all his sensory issues, braces would be a very bad idea. The actual braces on his teeth, rubbing against his lips. Then you have the original placement of them...and the monthly tightening. I had several sets of orthodontics. I had the roof of my mouth broken (not pleasant, at all), then had a "retainer" placed in there to hold it. I then had run of the mill braces on for four years. My mouth was a mess. The result is that I now have wonderful teeth. However, we were repeatedly told Austin's was cosmetic. He also hates brushing his teeth (sensory again), so who really wants to spend $4000 on a mouth that isn't taken care of in the first place? We also just keep going back to Asperger's and came to the conclusion that the pain was not worth it for him.

Then this tooth issue. Dr. H says that there is absolutely no room behind for the tooth to come in properly. When you look at him from the front, it looks like there is a gap there for the tooth. Yes, it would be crowded, but it would come in. Dr. H even thought so. Then he looked at the back of the teeth with his little mirror, and what do you know? The teeth are completely together, with absolutely no space for a new tooth. So then we looked at the other side and it was the same way. We are talking about his cuspid teeth. The tooth next to that one, the lateral incisor, is in completely straight, instead of semi-sideways. Dr. H said he is surprised he hasn't chipped it yet or had other issues with it.

Now with this tooth issue, we are no longer at a cosmetic stand point with braces. We have our consultation with the orthodontist scheduled for January 22. Yippee.

Basketball...really??

2008-11-05T09:42:00.000-08:00

Austin called me at MOPS the other morning to ask, of all things, if he could sign up for basketball. I was floored, but really excited also. This is a child who has shown zero interest in sports. When he was little, we tried very hard to get him involved in anything. Baseball? He stood way out in the middle of nowhere and spun in circles. Football? His team was too big, so every time the coach asked someone to sit out, Austin willingly sat on the sidelines. Wresting? Had some promise, but he was so tiny, no one could ever wrestle him. He did stick with wrestling from kindergarten through second grade - a long time for him. By second grade, the coach brought in his preschooler to wrestle Austin. And it went great. Then he quit in third grade because he moved up to the next level (third through sixth graders).

Part of the problem is competition. He just is not at all competitive so he has no real drive or desire to win. In sports, that is. With Aidan, it's a totally different story. If you lack that desire, then you really don't care how you do and it takes away most of the fun of the sport. I'm not saying I want a child who is so competitive that they pout for days on end if they lose (ahem - Ethan)...not at all. But you should be disappointed if you lose. Ah, well....it's OK for him.

He found his niche in vocal and drama and really enjoys that. At this point, I really thought all hopes of sports were off the table. And now this. I'm thrilled for him...I really am.

Oh, I should probably mention the "position" he tried out for (and got)....manager.

Agitation

2008-10-29T08:54:00.000-07:00

Austin's anger is still not getting any better. I keep waiting for him to simmer down, but it just isn't happening. He is so agitated by every tiny thing. I have been watching him a lot more, because when he's playing with Aidan, Aidan will suddenly just start crying. And Aidan doesn't ever tell on Austin. Very, very rarely - and usually only in self-defense. Austin tends to tell on every tiny thing Aidan does, so then Aidan defends himself. I've decided if Aidan isn't going to tattle (which I am thrilled about, in all honesty), then I need to really watch what's going on.

Outside, Aidan will be riding his scooter or his bike and Austin will decide it's his turn. He gets forceful and Aidan lets him take the scooter - usually while crying. They'll be playing a game and Austin will get frustrated or ticked about something, then either quit, say something mean, or push Aidan. Often times, Aidan just walks away. Sunday mornings are crazy in our house (Satan really likes to rile things up) and this week, Aidan needed help buttoning his pants. I asked Austin to do it. He very politely buttoned them....then immediately shoved Aidan out of the way. When I asked Austin why, he responded he wouldn't get out of his way. Aidan didn't even have a chance to move. This is also moving on to the triplets. He is now getting more and more irritated by them and not tolerating it - pushing them also.

Thankfully, in all his shoving/hitting, he has never seriously hurt anyone. What upsets me more is that he goes from completely OK, to getting totally ticked off and then hitting/pushing someone. It has got to be more than a little confusing to have your big brother do this to you - all the time. Aidan is too little to understand Asperger's, so how do we explain it to him? For now, I just say that Austin has a hard time with some things and he reacts differently than most people would because his brain is different than ours. Even that is too complicated, but I feel compelled to explain it. I don't want Aidan to grow up thinking he's doing something wrong. He's not. It's the nature of AS.

We sent in his OT evaluation to the school a couple of weeks ago and also increased his medication. I am hoping the medication starts to work soon and that OT gets in to help him out. I think that can make the biggest difference right now - because it seems like most of this is sensory-related.

Variety Show

2008-10-16T23:10:00.000-07:00

Austin's variety show for vocal was tonight. He had a little skit and they sang several songs. The band played several songs, also. The only complaint I have is that they get so very long. We learned after one performance last year to leave everyone else home - it's way too long of an evening otherwise. Hannah did have to go with (she ate twice during the show) though. Austin did a great job! I didn't get very good pictures, unfortunately. Austin is the one right in front of the piano in the red/white striped shirt.

Medicine Adjustment

2008-10-16T09:22:00.001-07:00

Austin has been doing just slightly better in the last couple of weeks, but he is still having a lot of explosions, easily agitated, he has no control over his temper, and many other issues still are happening, even after increasing his medicine. On the flip side, he is doing better when he isn't provoked and as long as things are going well. Which is something for him, because before even when everything was going well, he could explode. We talked to Dr. S today and she said that she feels that adding a little "boost" of Risperdal in the morning is what he needs. Since he take his medicine in the evening, by the time he gets home from school, even with all his cool down times and techniques, it's just too much. By adding a small dose in the morning, the hope is that he will be able to better handle afternoons and evenings. My one concern was that he would be sleeping through class, but his doctor said that his body is used to the evening amount and by adding in a smaller dose in the morning, he won't have the fatigue with it.

I really struggled with the decision to use medication to help Austin. We tried everything to help him, and for him, the best combination seems to be both behavior modification and medication. Even with the increase in this medicine, he is still below what he should be on for his weight. I also know that we tried everything possible with his psychologist and social groups prior to trying increased medication. We are not giving those up. This year his social group has been divided up so he will be in a group with 10-13 year olds, and it is later in the afternoon, so he doesn't have to miss any school.

We're hoping someday soon we can have one day with no meltdowns. Maybe that will never be possible, but I still believe it is.

Thirteen?!?!

2008-10-09T12:31:00.001-07:00

Thirteen....how did THAT happen??? I am a little late with my birthday wishes for Austin, but I do have a fairly decent excuse, I think.

This year has been harder than ever before and I think part of it is due to Hannah's birth. Just three days before Austin's birthday, I had the opportunity to vividly recall what had happened thirteen years older. It is amazing to me to think that thirteen years ago, I was having my first baby...Austin.

The other part that makes this year so difficult is the milestone. We are now officially in the teen years....and Austin doesn't give us an opportunity to forget it! With the teen years, comes speculation of the next years. It suddenly seems like in just a few days he will be gone forever...in college, with a job...who knows what the future holds! It certainly seems like just a few days ago I was pregnant and gave birth to him. And we are much closer to "the end" than we are to "the beginning." I know parenting doesn't end when your children leave home, but it certainly should take on a very different role. Before he leaves home, there is the inevitable Driver's License. He is already discussing his permit and which vehicle he will be driving. [News Flash: It will NOT be the truck, much to his dismay!]

His birth was a little traumatic, but very looked forward to. He was a beautiful baby. He came into this world with a full head of very dark hair and dark eyes. He was very alert and a very easy baby. He has blossomed into a very handsome boy.

As the years have gone by, Austin has endured many major life events. For the first three and a half years of his life, it was just he and I. Then came Steve. At first, Austin had a very hard time accepting Steve and it took a lot of time for him to trust him. We now know why (AS), but at the time it was difficult. Then we moved over 100 miles from where we had always lived. This was hard on me...I know it was difficult on Austin as well. (I now can't imagine anything better.) He did pretty well with this transition. Then came our wedding, and Steve's adoption of Austin. Then a couple short years later, the diagnosis of Asperger's. And, in the more recent years, the addition of five more siblings....three who came at once!

This is a lot of change in anyone's life, but can be especially difficult for someone with AS. Austin has done exceptionally well, overall, with all of these changes.

When I look at our lives now, I am amazed by the first few years of Austin's life. They were not easy, but they added character. Austin has no idea how difficult those first few years were, and it was all so worth it.

I cannot imagine our lives being any different than they are right now. We have a stable home, a loving family, and support from our families and friends. Austin does not remember much of the early years and that's OK. Sometimes, when we are back in Dubuque, we will drive past our old house. Austin remembers the attic, but not that it belongs to that house (it had a really nice finished attic that housed his playroom). He really doesn't remember living there. I am a little surprised by this because he remembers minute details of much of his early years, but not something like the house. I suppose that is also due to Asperger's.

In thirteen years, we have had many changes. One thing has never changed...my unfailing love and support of my son.

New Doctor

2008-09-12T11:47:00.000-07:00

Austin went to his new psychiatrist today. We have been leery of sending him to a psychiatrist mostly because some of them tend to be a bit of drug pushers. So we have been sticking with our family physician for Austin's needs, but we came to a point where we just simply had no choice. I felt that Austin was developing a tick and the question became is it really a tick and if so, what to do? Our family doctor, who is awesome, wasn't comfortable deciding those things, because, well, he's a family doctor and not a child psychiatrist. We knew this was a possibility from when we started seeing just him to handle everything.

I had heard of this one doctor over and over from other Asperger and Autism parents and from Austin's psychologist. She has gotten rave reviews....now I know why! She immediately put Austin at ease and that is HUGE for him! He talked to her....actually talked to her...on our very first visit! WOW!!! He doesn't usually like women doctors and he never likes anyone he first meets or is just extremely reserved for a while. He really liked Dr. S. That made it easier for me.

The first thing she wanted to do was to make sure the diagnosis of AS was correct. She asked where and how he was diagnosed and then asked us his symptoms. I wasn't even through the first tiny itty bitty wave of his symptoms and she said "yes, yes, very obviously Asperger Syndrome." And I still had a whole list to go through! Then she said, fairly early in the appointment (within five minutes) that she observed he had a tick and did we notice it? What a relief! She said the difficult thing is determining where it is coming from, but it really doesn't matter. It's actually a "fairly mild" tick in her professional opinion and he may outgrow it at some point. She said many, many children with AS have ticks. His is sniffing/snorting and it's gross. But he doesn't make any other facial or body ticks that we have observed (yet), so that is why it's pretty mild.

We also discussed the eating disorder and she is equipped to handle that also, which is good. It is so frustrating because he yo-yos between his eating patterns. Whenever we are somewhere or someone is here, he will eat like a pig....literally to the point of gorging himself. That isn't healthy at all, but I am helpless to stop it. It's like he's trying to prove he eats. But only when others are around. He goes so far as to order two lunches at school everyday even. Dr. S said that's very, very common and a huge signal of an eating disorder. When we are just our little family, he refuses to eat. For example, Sunday he was "just starving" while we were getting dinner ready. Our dinner was really brunch and we had pancakes. He had two and he was "stuffed." That's fine. However, the rest of the day (we ate around 11:30), he was "too stuffed" for another bite. He didn't have any snacks whatsoever and refused to eat any supper, even at 8 pm that night. Steve found an apple pie in the clearance bins at our grocery store, so he picked it up (I only can eat that another week!). Austin was drooling over it, as per usual, but when it came time to eat it (Aidan was begging), he was too stuffed. We have noticed that little pattern, also. He will talk and talk and talk about sweets and how good they look and how he cannot wait until it's time to eat them....then totally refuse anything remotely sugary when it's time. And that doesn't usually matter where we are. Home, birthday parties, anniversaries, family gatherings, anywhere. He just doesn't eat it. Which, again, is very healthy and I wouldn't normally mind, but why discuss it at such great length, only to refuse it? Yes, that's a rhetorical question and I know the answer.

Another thing we discussed was his problem with bedwetting. He sees a urologist for this, but I am beginning to question why. I started paying close attention to it and noticed about 2 weeks after school was out for the summer, he quit entirely. Well, that just so happened to coincide with an increase in his medication, so I assumed that was why. Then we went back two days before school started and again, he was doing great. Hadn't had a wet night in three months. Three months!! Then school started and we haven't had a dry night since. So then I started to wonder if the bedwetting is really related to anxiety and, if so, then is the medication necessary? Yes, Dr. S believes it is anxiety driven. I didn't discuss the medication with her, but I am going to next time. If it isn't working and it isn't related to anything physical, then why add in one more medicine??

At the end of our appointment, we decided to increase both of Austin's medications to help with his irritability, aggression (it's really bad lately), and anxiety. She said he was on about a five year old's dose of Risperdal and his Prozac can go up also. She didn't add in any more medications and felt that the Risperdal/Prozac combo is perfect for AS. It just needs tweaking. Another plus for her....no additional meds!! So we increased the Risperdal this week and then in two weeks, we increase the Prozac and then we go back to see her next month. So far, there have been no changes in his behavior (still extremely aggressive), but it takes time to build up, also. And if this dose is still too low, we can even double what his new dose is and be safe for his weight. So there are still options.

I am so glad we decided to go to see Dr. S and am grateful she was so good with Austin.

Our "Move" Update

2008-08-24T12:46:00.000-07:00

I am now ready to post about our "move." It is not a physical move, as in a home move. But it is a big transition and move for us. As a warning, I am going to share some strong opinions here, so if you are offended, please do not read any farther. (I also got a little windy!)

As of yesterday, we left our church. We are going to be attending a new church. After much prayer and discussion, it because incredibly clear that we are not where we need to be anymore. It was really difficult for us to decide this. I accepted Christ at our current church and Steve's faith got even stronger; our last pastor went to Dubuque to marry us and was a large part of our wedding and our lives; all our boys (except Austin) were baptised there; and Steve and I were both highly involved in a lot of areas of that church. For the last year, we have not been happy. We have been praying and praying for something to realize if we needed to stick it out, and we tried. As soon as our last pastor left, several changes took place.

First, the doors to the church were locked 24/7 unless the pastor or secretary were there. The secretary was there more often and she is only there from 8-1 a few days a week. That meant there were entire days and every evening/afternoon that it was locked up. What does that say about our position of faith that we lock our church up so noone who needs it can get in? Just to keep a few "juvenile delinquents" out. (The reason I was given.) And maybe those kids really need to be there. We are not trusting God to protect His own place of worship??

Our contemporary service fell by the way side. It was neglected, I felt, and I got the impression it was not a priority and was looked at as fluff. We merged with another church who also had a contemporary service, but their contemporary was in addition to tradition worship. Ours was our worship service for many in our church. From the start, it just wasn't great. We have chosen the contemporary service because it's our preferred style of worship and it is more relaxed. Austin is much more comfortable in that service and so are we. We do not feel the need to explain to anyone that, while it looks like he isn't paying attention, he's probably getting more out of it than anyone else. He lays down on the pew and puts his hands over his eyes, so that he isn't getting a lot of other input and can just focus on the message. It looks disrespectful in a traditional service, but we know why he's doing it. We also don't have to worry as much about what Austin is wearing and we can eliminate that part of his sensory issues by allowing him freedom in his attire. We were not getting the same sermon the other service was in the beginning because our pastor was assuming we would all be at the traditional service and it just wasn't tended to the same way it had been. Finally, Steve and I overtook it and for the last several months, Steve has written the script, found the scripture, picked the songs, and done everything for the service; while I lead it every Sunday morning. We have been using Nooma and Andy Stanley videos for our sermons. It has very much felt like we were "renting" space to have our own little church. But we were willing to do it to keep the service alive. It has been falling apart, though, and more people have left than I can count. I was told, when I informed the pastor that it was over, that she was told from the beginning of her time that it wasn't a well attended service and was not worth fighting for from our district superintendent. What?!?!! That was our most heavily attended service and what right did the DS have to give it a death sentence from the word go??? That really upset me not just because of our church, but the entire denomination as a whole.

Prior to the triplets, I was highly involved in our children's ministry programs. I spent a lot of time on our Safe Sanctuary policies, which was mandated by our bishop, only to have a lot of members very upset by the new policies. Then it was largely ignored anyway when it came time to implement it. A lot of people felt that I alone had decided these policies and that they were not necessary in a church our size. They were told over and over that it was mandated by the bishop, but did not believe it. I gave up when the triplets were on their way and have not enforced it, yet am still getting remarks about it. I have fought for over five years to get safe classrooms in our church building. We have rooms in the balcony that are being used, with risers still in them and broken glass panels that are a huge danger. Everyone fought me tooth and nail in fixing any of it, because it is "beautiful stained glass." Yes, in it's day, it was beautiful. But today it is being held together literally by tape in most places and it is an eyesore, not to mention dangerous. We raised money and finally got one room totally fixed up. I thought that would show people that we could do it tastefully and from the sanctuary, you wouldn't even notice the difference. No, it just made people madder that we messed with it at all. Almost all our money was used up after one and a half classrooms, so it has sat. We also had a very difficult time paying the electric bill most months due to people withholding their offerings because of our last pastor. There were times our last pastor and last secretary were not paid, because it was either pay them or pay the light and heat bills. Just in the last two months, $17,000 was raised for a new floor in the fellowship hall (which was not needed). The parsonage has been fixed up beyond anything I have ever seen (our last pastor had to literally buy his own door when the lock was broken and the trustees felt it was his responsibility). All this money suddenly appears from nowhere and is used for things that don't need to be done...while classrooms and our children are still unsafe.

My final straw was confirmation. Our church has always confirmed in seventh grade. I believe that confirmation should have no age...when you accept Jesus as your Savior, then you either become confirmed or are baptized. Whether that's at 10 or 110. However, I knew this was our church's stand and I just decided if my children couldn't honestly tell me by their words and actions that they had accepted Christ by that magical age, they would not be confirmed. Austin is in seventh grade, so it was his year. We discussed it at length and I truly felt he was ready to publicly announce his faith and make a promise to his church. Then the pastor decided to include sixth graders in confirmation. Now, seeing my beliefs (as I just stated), this was hard for me. I decided to go to the pastor with my concerns and I was largely brushed off, being told I could take it to the Ed. team. I did. I would have been OK with sixth graders being confirmed if there was a good reason for it and it was a faith-filled decision. The reasons I heard were that the pastor wanted every other year off because she has no time; one person had three children three years in a row and would need to come back again next year to confirm another child if her sixth grader wasn't allowed to be confirmed with her seventh grader; and "sports/music programs get in the way of confirmation" (was stated that way...I heard "confirmation gets in the way of music/sports"). These were the reasons stated for lowering the age. What?!?!?! Seriously? Nothing about faith, nothing about Jesus Christ. When I mentioned the intended meaning of confirmation is to confirm your faith in Jesus Christ, a few of the teachers looked uncomfortable. These are the people who are teaching my children? I think not.

I went home from that meeting with my mind made up. Steve had made up his mind that he wanted to leave over a year ago, so he was fine with it. When I started to see our church dying several months ago, I was concerned, but willing to try to stick it out. Many people have left...including the Holy Spirit. I have not felt the Spirit in that place in a long time. It is not just me. That's sad to me and I am not willing to sacrifice my walk any longer nor my children's. I have been getting most of my fulfillment lately from my bible study and Steve from various pastors he sees online. And while that's good, that's just supposed to be a supplement to church. It hasn't been...it's been a replacement. I need to grow again and not feel stagnant. I need to feel challenged in a sermon...and a little uncomfortable. I need to think about the message that's been said, by a pastor who's there in the flesh, rather than leave feeling good about myself and what I am doing. I'm not there to get a pat on the back...I'm there to be challenged to grow and to encourage other believers and be encouraged by other believers.

I know our pastor believes that we are leaving because we are finished with the contemporary service. It has so little to do with that. There are so many things wrong and I can't keep being angry at my church. I fight the schools non-stop for what Austin needs...I fight at home with Austin with so many meltdowns....I need church to be a place where I feel OK and not like I have to keep fighting everyone for every little thing that needs to be done. Our family needs a change. And while it is not going to be easy for any of us, it will be a transition we will make together and we are all now very excited about making.

Goodbye/Hello

2008-08-14T13:15:00.000-07:00

Toodles summer...hello school. Yep, school started today. We have spent the week preparing for the beginning of seventh grade and I think Austin's probably ready, but still very nervous. He was very scatterbrained on Monday, then did great Tuesday going through his schedule and talking through when he'd go to his locker, where he'd meet the bus for lunch and home, etc. Then, yesterday, he was terribly scatterbrained again. He was all over the place in his speech and his actions. He was also shaking and had the look on his face that speaks volumes to me about the amount of terror he is feeling. I feel horrible, but we did everything we could to prepare him and I know he will do better today because of the visits and prep work done beforehand. He was excited this morning when he left and he even voluntarily walked to the bus! That's huge. He usually begs Dad for a ride, even though he'll be 45 minutes early (which he actually prefers...then he knows he won't be late). Today, he asked Steve if he was walking, Steve said yes, and he said "OK, have a good day Dad!" WOW! That's a great way to start the day and the year!

I spoke with the new principal (last year's guidance counselor) about a few things in the 504 and already have not gotten great responses. I felt immediately that the 504 was given to us because I b*tched enough and now it was time for me to shut up because I got what I wanted. The biggest sticking point that I was very upset about was the social group. One of the most important elements in the 504 and one of my personal victories. When I brought it up as to what day it would be, so I could prepare Austin for that also, I was told that was not up to the school to do and was up to the school social worker. Guess what? We start school so flipping early that the school social worker (employed by AEA) isn't even back in the office until we have been in school over a week! I did call, though, and left a message. I also looked over the 504 and it said very clearly that the people responsible for the social group were teachers, staff, and AEA. Not just AEA...I would think the principal would fall under staff. I went over her and spoke with the new guidance counselor about it and she was excited about it, has done them before, and wants to do it herself!!! Yay!! She's about 12, and she just graduated with her masters in 2006, then was in a different district last year. Which means it's only her second year in this. Which usually translates into excitement, a yearning to learn, and wanting to do things, and generally more knowledge, especially about something like Asperger's. I am excited and I think she will be awesome. Austin seems to have already connected with her...I hope so!

On a completely different note...we are facing a difficult decision as a family. Our minds have been made up and in three short weeks, we will be making a very big move. I can't really say more than that right now...we're keeping it to ourselves and a very few close friends. It's not a great time to be doing something like what we are planning, with a new baby and all that means, but it is definitely time and something God definitely has His hand on and is leading us. We have been discussing it for over a year and the time has come to do something about it. It will mean a transition for Austin (and for all of us) and we want it to go smoothly. We spoke with him about it last night and at first, he was upset. Then, as we talked more about it, he seemed OK with it all. What I am asking you for is prayer...lots and lots of prayer. That as we move towards this transition, we trust the Lord to guide us and give ourselves completely up to His Will; that we all as a family make the adjustment smoothly; and that there are no hurt feelings. It is going to be hard on all of us, but especially Austin. Steve and I are both at peace with the decision finally, though, so we know it is right.

Agh!!!

2008-08-05T16:15:00.001-07:00

Oh...I am sooooo not enjoying the "teen years." And he isn't even a teen officially for another month and a half!!

Austin has been incredibly beligerent and confrontational - constantly! Everything is a fight. When I point out to him that he is being confrontational by the tone of his voice, his stance, and his words, he instantly says, "NO, I'm NOT!" Steve actually thought it was humorous today...but he hadn't just spent the previous six hours with him acting in this manner.

We have had more stomping up the steps, slamming doors, being agitated by every single tiny thing either I or Aidan does, and most of the time Steve also. Then, when he's calm, he acts as if everyone should just be on their jolly way. There is no apology, no explanation, nothing. And when I point out there are still consequences for his actions, we get another highly confrontational "WHY?!?!" and it all starts all over again.

On a happier note, he is going to start seeing "the best" child psychiatrist in the Cedar Valley. She comes highly recommended by other parents of kids with AS and also our therapist, who has several kids who see her. He did warn us that because she is becoming increasingly well known, she is getting difficult to see. Therefore, the clinic she's at will try to schedule patients with a different doctor....and whom they schedule you with is apparently a horrible doctor. I told Dr. P I was willing to wait as long as it took to get into Dr. S and would let the clinic know that. I just hope she doesn't take too long to get into - for our entire family's sanity sake. And, I may just very well be bald if it takes forever!

Fair - A Week in Review

2008-08-02T11:01:00.000-07:00

Sunday, Austin took his Blue Building projects. He took in two pictures and one consumer savvy project. His consumer savvy project was my favorite. We go through a TON of bananas in our house, so he compared bananas bought from KwikStar and bananas bought from our local grocer. The immediate cost difference was 30 cents. However, we wanted to see what the actual cost was once you peeled the bananas. We thought the difference would shrink, because you would lose more actual product with the KS bananas. How wrong we were! You actually end up losing MORE buying them at the grocery store. The true difference was 54 cents! Needless to say, as much as possible, Steve will be picking up our bananas for sure on his way home from work every night. He was considered for state for this project and ended up with honorable mention. For this project area, only one went to state and only one received honorable mention, so that was awesome!

He took two pictures from his birthday party last year that he took with his new digital camera. Both of those were also considered for state. One received a blue and one received an honorable mention. Another great job!!

Finally, he showed his rabbits yesterday. This was our first year using our own stock, so we were curious to see how they would do. They were bred from the excellent breeder stock we use, so we were hopeful until last week. Then they all of the sudden started molting all over the place. Our fair is so last in the year that it is blazing hot by the time it gets here and they were a mess! Still, we tried to pick the best ones available (he only took three).The senior buck, Bucky, received a blue. His ears were a little long and he was molting, but he met breed standards, so he received blue. One senior doe, Pip, received a red because she was too fat and over breed standards for weight. Steve doesn't agree...he thinks she was right on the line, but there was no scale and she was a hair chunky. She was also molting and pitting from how much hair she was losing. The other senior doe, Dino, we had showed last year and she did really well. She received a blue this year again, but was a little long in body to beat out some of the smaller ones. Again, still within breed standards, though. Overall, they did better than we thought they would and Austin was pleased with how they did. It was a HUGE class this year....larger than last year (13, with two being disqualified right off), so that made competition a little harder also.

Austin didn't want to do showmanship this year, but we made him. It's the one area he can show what he knows about his rabbits and how he handles them. In other words, it's more about him than his rabbits. It's important for him and he learns a lot through that process so we make him. He does consistently well in this area, also, so I don't know why he didn't want to do it. He did do it and ended up receiving Reserve Grand Champion! I knew almost immediately that he wasn't going to get GC this year...there was a new girl there and she expertly flipped her rabbit. Austin didn't support his rabbits butt when he flipped his and that counted against him. But he impressed the judge with how he answered his questions and how he handled the rabbit. He said he knew which kids worked with their rabbits and which ones just showed up at fair without spending time with them and if you work with them, you will be rewarded for that. He was an excellent judge and really did a lot more teaching than I have seen in previous years and also at other fairs.

All in all, Austin had a great experience and did really well all week! And I'm thrilled that we go pick up projects today and fair is over again for this year. We all look forward to it, but we are all happy when it's over, also!

School!!

2008-05-19T13:14:00.000-07:00

Austin called me in tears around 9:30 saying he couldn't possibly stay at school any longer. Too many people were picking on him and he couldn't stand it any longer. So, I went to get him. I think what happened is his best (and only) friend moved to Florida on Friday and the other kids now know that there is noone who will stick up for Austin, so they are going to push limits. It was horrible. He has not asked to come home all year, and since he is out of school on Friday, I had no problem picking him up. I'm not leaving him where he is miserable.

Last year, he had his school nurse to turn to. It is now in his 504 that he still has this escape, in the GC's office. The one the GC wanted to take out. In previous years, the nurse would allow him to sit in her room for an hour or however long he needed and then try going back to class. She wouldn't bug him...he could just relax and escape, read if wanted, rest, talk about it if he wanted to. But he wasn't forced to talk about it.

Well, I asked Austin why he didn't go to the GC's office. He said that she would only make him tell who was doing it and then it would only get worse for him...plus she wouldn't believe him anyway. I was so frustrated! What good is an escape if he can't go there unconditionally??? I have heard this from many NT kids, also. That they want to know who is bullying, but noone is willing to name names because it will be awful for them if they do.

Thank goodness school is out this week....Austin cannot handle much more of this and I'm not sure that I can either!

504 Update

2008-05-15T13:04:00.000-07:00

We wrote Austin's 504 last week. I was really happy with the end result. There were several things the GC wanted taken out that "he doesn't use," thankfully the ART rep said they have to be in there and we can't take away his safety nets.

In September, he will have an OT evaluation and then they will work with him on that. He also will have a social group for 30 minutes per week with his peers. I was most happy about that one. He still has his escapes, assignment book accommodations, schedule changes noted ahead of time. I was really upset with the GC over one point. Austin has ALWAYS been warned the day they will have a tornado or fire drill. This is because of several reasons. Sensory wise, he cannot stand for a sudden blasting noise to just happen if he wasn't prepared for it. Also it means a change in schedule and he can't handle that. It doesn't necessarily affect him at school, but it makes for a hellish night at home on those days if he has no warning. So for the last several years, he has been warned in advance. Well, apparently that was not happening this year because the GC said that if there were a real drill, he wouldn't be prepared and it would mess him up. Oh, now that's a fantastic logic. Whatever. I pushed and pushed and said she had to understand how traumatic these things are for him. She still wouldn't budge. The ART rep got her to say that she would at a minimum tell him the week of a drill that there would be one. I'm not happy with that, and I know deep in my heart it won't happen (it's not written in, and I didn't know it until it was too late), but that's the most compromise we could meet at.

They also said next year that he would be given "packets" on Monday and they had to be done on Friday....with no teacher involvement. I said that would never work with him. So, we wrote in that the teacher has to break down the packets for what has to be finished on Tuesday, Wednesday, Thursday, and Friday. That way it isn't so overwhelming and we're not having massive meltdowns every Thursday night.

Today, the day we wrote this, Austin came home with a blank assignment notebook. He had a substitute teacher who said she didn't have the "authority" to sign off. What???!!!?? I didn't even foresee that problem!

I guess we will see if this works. A few things were going to be left out, but I pushed for them and so did the ART rep, thankfully. We ended up with a pretty good plan, as long as it is followed!

2008-05-05T23:33:00.000-07:00

Austin had Fine Arts Night tonight. He didn't tell me until we were on the way that he was going to be getting an award. I was slightly surprised by it. He has been doing "Reading Counts" all year at this school. I do not agree with the program. The entire basis is that you read a book, then take a quiz on the book. Each book is worth so many "points" (based on a Lexile score) and you get prizes based on how many points you rack up. I have no problem with giving tests to see how a child has comprehended the book, but my problem is with getting prizes for reading. I think you should just expect a child to read...no matter what...and they shouldn't be rewarded for it. Austin loves to read. Anyone who knows him, knows that he constantly has a book under his nose. He's forever reading three and four different books at a time. So for him, Reading Counts was a breeze. He's continually brought home little updates throughout the year that list the books he's read, the Lexile Score, date read, percent correct on quiz and how many words there were in each book. It's all been interesting to see what books he's read (especially when a few he's been expressly told he could not read, but whatever) and I didn't think it was too big of a deal. He's kept me up to date on how many points he's racked up and he has gotten pizza slices and other prizes, plus a $5 gift certificate to the book fair (by far, the greatest prize given...I have no problem with that as a prize). I did not, however, put much stock in it. I thought everyone was getting points and I really didn't understand the whole system....obviously. Last night, as they were announcing the "winners" for Reading Counts for the year, they said that 42 students (out of the entire school) had gotten between 100-200 points and everyone cheered. That's when it hit me....this was a HUGE deal. I KNEW Austin had around 600 points. The next level, 250-400 points...silver...had only 8 students in the entire school. Then she got to the "gold" level readers. Austin was one of THREE...count 'em, three!!!...students! Out of the entire school! Him and his best friend and an eight grader received the gold level. Austin happened to have racked up the second most points in the entire school! Mikhael, his best friend, beat him by 3 points. I was so proud of him...and I did apologize to him for not making a bigger deal out of it to him throughout the year. He's got a little certificate, ribbon, and his final report. I am really proud of him...and more than a little upset with myself for not realizing until 2 weeks before school is out how big of a deal this is.

He also sang a few songs last night. They did a great job. With the awards before and band and vocal from all three grades performing, it made for a very late night. We got home at 9:45! We had left at 5:30. Aidan insisted on going and I let him. I had no idea how long it would get. We weren't even halfway through the awards part when he was spinning on the floor. Ugh! He's not going next year!

All in all, it was a great night!

FINALLY!!!!

2008-04-29T11:53:00.000-07:00

We finally have it! We finally got a 504 for Austin!!!!!! Yay!!!! After so many years, it came down to getting the right person to NOT take no for an answer and force it through. Today we met with the school social worker for Keystone, the ART rep who observed Austin from Keystone, the guidance counselor - who will be principal next year - and the teachers. The ART rep had two pages of recommendations for him and said that since he had such great accommodations already, they really need to be written down. The GC didn't agree at first, but didn't say much. ART rep let it rest a few minutes, then brought it up again and said they really need to be written down. She said she couldn't get him to qualify for an IEP because of his grades, but he really needs a 504 and Keystone can't write it for him, the school has to. Finally, the gc/new principal said yes, she would write one for him!!!! Yes!!! This is what we have prayed for. This is going to be huge for him.

She said he needs to have in his plan social skills training; he needs a social skills group - at school; he needs someone to discuss his consequences with; someone to teach him what's appropriate and what's not; he needs an OT to work with him on a sensory diet; he needs a swing; plus all the accommodations that they are currently doing for him need to be written into the plan. This way, it will follow him. Every single year, we have had to start over and re-write accommodations. But even then, they are not formal accommodations, so for teachers who choose not to follow them (and there are a few), there have been no consequences. With a 504, they have no choice and everyone has to follow it. It will also be written in that every year he needs to walk through the school with his schedule two weeks before school starts, every day; he needs pictures of all his teachers he will have; his schedule needs to be where he will stay in one area with all the teachers in that area as much as possible during the day; etc. I am beyond thrilled that we finally got this accomplished.

She said when he gets to eighth grade, his 504 needs to transition him to high school and then follow him through high school.

We meet again to write the 504 on May 13 and it will go into effect next year. He is out of school on the 22nd, so it really doesn't help this year, but maybe next year will go more smoothly. Please now pray that everything we want in it, goes in and there is minimal discussion and it just gets written.

A Little Closer...

2008-04-17T10:56:00.000-07:00

I got the call from the Keystone ART lady and I was thrilled with what she had to say. While it wasn't what most parents want to hear, for us, it was great.

She went to observe Austin on two seperate days, once all morning and once all afternoon, including lunch on one occasion. She said she did that in case one day was a good or bad day. Both days were consistant. She said in her observation, he has absolutely zero social skills, he has a negative approach to people, and he does not understand non verbal cues at all. She said the interventions in the classroom seem to be working well....but Steve and I feel that they probably were working excellent that day because the teacher knew they were being watched, also. To give credit, though, he has two teachers who are excellent and really do work with him and one study hall teacher who is also really good with him.

He has one teacher who is incredibly sarcastic and will tell them incredible stories. Whether these stories are true or not (we have no idea), the ideas and theories behind them are awful and I don't want any of my children exposed to them. None the less one who has no idea and cannot understand if he is being sarcastic or if he is telling the truth. Austin thinks everything he says is the truth. For example, Barak Obama was apparently visiting somewhere and would only sign one baseball. He put on a hat and sunglasses and got two baseballs autographed. So, if this is true, that's teaching my child to be deceptive. And unfortunately, even if it isn't true, it still is teaching my son to be deceptive. Another time he went to see Hillary Clinton and apparently she wouldn't sign anything, so he dressed up as a homeless man and begged for her autograph as his only source of income. Now, I can see where that is probably a made up story, but I wasn't there to run interference on body language and tone of voice, so I have no idea. Austin totally buys it, though. Yeah, great influence on my son....and he has him for the next three years, no matter what.

BK (the ART lady) said that she would like to see him get a 504 and get social skills training as soon as possible. She said that she can easily see him dropping out of high school at the rate he's going, or at a minimum, not succeeding at any job he gets because of this. If he even gets a job at all....because she said with how negative his approach is, he would never be able to even secure a job through an interview. But it can be turned around....with the right help. Steve and I have been telling the school this for years, but they don't listen. All they tell us is how intelligent he is. BK informed me it no longer matters how intelligent he is, he is not going to succeed in life at this point. Which is exactly how Steve and I have been feeling. When I mentioned resource room to her, she agreed with me. I was about on the floor! Noone has agreed with me....ever!! They are so big on inclusion, inclusion, inclusion and mainstreaming everyone...why would you ever even fathom taking a child who is mainstreamed out??? She said he has to get social skills training, be taught how to read non verbal cues (at least to a minimal degree) and needs a lot of other supports and the only way he is going to get that is in the resource room. No other teacher is going to volunteer their time to teach him this stuff....it's not educational, according to them. She sees him in the resource room for at least a little while throughout the rest of middle school and high school. She said even simple things like Homecoming week can be discussed in resource room. She said the spirit days can wreck havoc on a child with AS because they have no idea what to do/how to dress. With a special ed teacher, they can talk through their wardrobe and discuss what's appropriate and what is not and decide together what to wear to school. We had that problem this year and it did not hit me until she said it that it was AS-related. He paid $1 everyday to wear pajamas, school colors, and a hat. Then he never did any of them! I didn't understand why...until she said because he couldn't connect what that really meant or what would be appropriate to wear. Duh! I should have connected it, but I didn't. He just told me he "forgot."

Now for the loophole. Even though BK wants him in resource room and wants him to have a 504 immediately, she has no power to do so. I am getting so frustrated with that. Everyone we talk to, and I do mean everyone, says they are not the ones to make the decision on the 504/resource room. Then who is??? I am starting to get really sick of noone owning up to the fact that they are the one(s) who doesn't think he needs it. In grade school, we had teachers, a school nurse (no guidance counselor), and a AEA rep who believed he needed some supports. But none of them made that decision (and I know they weren't). So who is telling us no all the time??? I know at the end, when we got really into everything, it was the director of special ed for the AEA system who said no and his word was final. But why should someone who has never met my child and only has a synopsis of what's been going on have that much power? And come on, there has to be someone at the local level who is also saying no. So please keep praying that now that we have someone from the Autism Resource Team, with a degree, who specializes in Autism, saying he needs this more than anything, that it will happen. Of course, they didn't listen to our psychologist, but maybe they will listen to her. She said she will set up a meeting with the school ASAP and put her voice behind ours to help us.

I have been getting to the point lately where I started to wonder that maybe Austin was just really screwed up and didn't have AS at all....maybe it was another misdiagnosis and we were imagining things were worse than they are. I mean, two years ago, the ART lady from AEA 267 told us she saw absolutely no autistic tendancies at all in Austin (after 45 minutes), after we had the diagnosis from the top child psychologists in the state. So it makes you wonder and question everything as a parent that you are doing is wrong. I am beginning to think that is what the school administrators want us to believe. But now, once again, we are being validated by someone who sees this every day and can easily see AS in Austin. I will never stop advocating for my child and I will never give up on him. I am his parent...I am the one who knows him best. Why won't the schools just listen for a change, instead of putting up defenses and fighting us so hard???

Argh!!!

2008-04-14T13:09:00.000-07:00

I am so frustrated. We have a week of absolute bliss with Austin and he was doing so well. And then, he explodes. Every single day. And he's so belligerent. He seems to be doing more and more echolalia, but I wasn't sure if that was just my imagination because I was already frustrated or if it was really true. Steve also observed it and said it has definitely ramped up.

He's also been complaining a LOT about his heart racing. And it has been. A lot more often than usual.

Then I was setting up his medicine last night (and I hadn't set it up in a few days) and I noticed he was about a week behind in medicine. And some medicines more than others. For instance, his Prozac was almost exactly on time. The other three (another anxiety one, heart med, and his bed wetting one) were a week behind for sure. Hmmmmm....interesting. Then it hit me. His little daily medicine thingy was missing, so I have been telling him to take his medicine and every night, I tell him how many of each medicine to take. Every night, he tells me he took it. When I went to fill it last night (because I found it), I discovered this. I think that he is technically telling the truth. He is taking - some - of it. He's taking one of the medicines and not the other three. Which then explains the extreme explosions again. But I don't understand the increase in the echolalia. None of the medications are meant to help with that. Steve thinks he does it more when he's anxious or high strung, and that might be it. Don't get me wrong, he does it constantly on a good day. But this has been NON-STOP. He has been repeating everything. For example, we were in getting subs at a little place here on Saturday. Generally, he will repeat things, but they don't sound too bad or he does it quietly. Well, he didn't that day. The guy told me how much it was and Austin suddenly breaks into song singing "Fif----teeeeen eleven, fif----teeeen eleven," over and over. I told him to just quiet down a bit, so then he starts repeating it over and over and over, until I was done writing my check and we were headed out the door. Now it's funny. It wasn't so funny when we were standing there with someone who is seeing a "normal" looking kid just break into song during a very busy day (spring open houses) in a packed little room.

I don't blame him for not wanting to take his medicine. I know how much it sucks to have to daily take a medicine....and know that you are going to have to do that for the rest of your life. I totally get why he wouldn't want to. I just wish his container wouldn't have gotten lost for a week because he was doing so well and he gladly takes it when it's all laid out for him in his container. Not on his own, but when reminded he takes it.

I guess on the positive side, we know he needs all the medicines he is on, because when he doesn't take them, he is drastically different. Even the heart medicine. We have wondered if he still needs it, but the only way to know for sure is to take him totally off. Obviously, we aren't purposely going to do that. Turns out, we didn't have to. I tried telling him last night that if he was sure he took all of his medicines that then he wouldn't have had the heart racing (that's the most concrete medicine, so the one I use for illustrations).

Hopefully this will be the last time this happens!

Still Nothing

2008-04-09T12:08:00.001-07:00

Well, it's been over a week and we still haven't heard anything from the school. I know that that doesn't seem like very long, but when they said they were going to "get right on it," I assumed I would have heard something by now. I should be used to this. I know how slow they are and we have been waiting for three years to get anything done, but it's still disappointing when they get your hopes up.

Hopefully we will hear something soon!

4H Presentation

2008-04-06T22:09:00.000-07:00

Austin had his 4H presentation tonight and did a great job! In his club, everyone has to do one presentation a year. There are no guidelines for it, other than it has to be 3-5 minutes for Juniors, 5-10 minutes for Intermediates, and at least 10 minutes for seniors. It can be on anything you want and you can enhance it with posters, etc. He did not do a poster this year, and it was the first year I didn't fight him for it. A lot of kids do crafts or a recipe. Austin's first year he did a rock growing demonstration, along with rocks he had already grown. His second year he did a presentation on how to make paintbags. He took that one to Communication Day and then county fair and the Cattle Congress, which is a big deal in our area.

He decided he wanted to do his on Autism, and specifically Asperger's. He said that way back in September. I wasn't sure if he would really want to do it when it came down to it. We did a bunch of research and I told him he should throw in his personal experiences, since he was planning on telling everyone that he had Asperger's anyway. He insisted he did not want to do his own experiences, so I dropped it.

He ended up with an extremely formal, practical presentation that was very educational, and very typical of Austin. He even used DSM criteria for diagnosis. He had a synopsis in the beginning of classic Autism, Rett Syndrome, PDD-NOS, and Childhood Disintigrative Disorder, but we made him cut that. He was wasting 10 minutes explaining the differences between each one. He ended up just mentioning the different things that made up the spectrum.

He asked everyone if they knew what autism was or knew anyone with it and a few raised their hands. Then went into his presentation, then asked for questions, without mentioning he had it. I thought maybe he decided against mentioning his experiences because he didn't want to, but I was wrong. He told me he knew someone would ask why he did his presentation on that, and he was correct. That was the first question that was asked and he said, very clearly, "I have autism." I was so very proud of him! I knew it couldn't be easy for him....the girl that picks on him constantly was in there, along with a few others who aren't very nice to him, but he did well.

Progress maybe??

2008-03-31T13:23:00.000-07:00

[Before beginning....we are in a "whole grade sharing" district. This means that we have not merged and our two districts are separate, but together. We each have an elementary, then "whole grade share" for middle school and high school. We each maintain different school boards and, because of boundary lines, we are in two different AEA systems. For the next three years (well, now 2 years and 6 weeks), Austin will be in this other AEA system before moving back to our AEA. That might help explain some of this...I hope!]

I received a call from the AEA for the district the middle school is in today. It was from the social worker and she said that she has been hearing a lot about Austin this year in team meetings. Hmmm....I contacted her last year for help and she couldn't help me then (because we're in the wrong AEA) and she waited until April to discuss this??? I guess I shouldn't worry about it, considering what she did say.

She asked how things were going and I prefaced everything I said by giving her the warning that anything I had to say right now was not going to be pleasant. I am so sick of dealing with the school and all the issues we are having currently. She listened carefully, asked questions, and then asked about his IEP. Hahahahahahaha....what IEP?? She was shocked he didn't have one, then proceeded to ask about his 504. Another good laugh. She was really shocked. Then she assumed that we, as parents, had diagnosed Austin with Asperger's and possibly had no medical back up for this diagnosis. Wrong again. He was diagnosed over three years ago, I informed her, by several of the best child psychiatrists and psychologists in the state - who were seeing him for anorexia at the time! The school just refuses to acknowledge it, saying it is a "medical diagnosis" and not an "educational" one. She asked who told me that and I informed her the director of Special Ed Services for our AEA told us that. She was flabbergasted and said their AEA preferred a medical diagnosis. But if we needed to have him tested educationally, she would see what she could do.

She wants their ART (Autism Resource Team) to go and observe him. I told him that the last time they did they went during the strongest, and favorite, subject of the day and found him on task with no autistic tendencies. How the lady missed the paper and pencil eating, echolalia, hunching, and other behaviors is beyond me, but she did only go for 25 minutes...during science. She said that her team would go at least half the day and would spend the entire day with him, if they needed to (meaning if they saw nothing of concern in that first 1/2). Steve would really like them to observe lunch time and I don't know if they will, but I wish they would, as that is where he has the most trouble, other than bus time and hallway time.

She said then that herself and the school psychologist will go to the school this week and look through all of Austin's records (that'll take a few days!) to come up with a plan along with the ART. She also said the words I have waited over three years to hear. She will begin working on getting him a 504 immediately....and we can request an IEP. We have before and got nowhere, but maybe with all the issues this year, it might happen.

I am trying very hard not to get my hopes up too high that they will actually follow through and get him the 504, but I am also praying that something finally does happen. He has had so many people observe him, they have videotaped him at the school (we were not able to view it because it couldn't leave school property and we didn't have over an hour to watch it there at that time), they have had meetings upon meetings with us, the school nurse from his elementary was even in agreement with us that something needed to happen, and yet, nothing ever did. It is hard to be hopeful at this stage, but I am putting it in God's hands. Austin desperately needs someone on his side. Someone other than Steve and I who is willing to take off the blinders and see that Austin really does have Asperger's...even though he is intelligent. This lady seemed really nice and hopefully she can be that person for him and for us.

Please keep this in your prayers. The call came out of the blue yesterday and, although I was disappointed it took this long, I was so thankful that someone had called.

No more slamming???

2008-03-28T14:46:00.000-07:00

It has been four more days and we have not had any slamming or stomping. In fact, Austin has been pretty pleasant the last few days. I know it won't last forever that we will be without anger, but I am praying that he knows that slamming and stomping is unacceptable and he is done doing it.

No Response

2008-03-27T14:40:00.000-07:00

Once again, I guess the guidance counselor is going to pretend her e-mail doesn't work. Except today Austin got pulled into the office for "lying" to his parents about what occurred in the hall. Suddenly the person who pushed him down became a girl (it was a boy) and she did it "by accident." Now, if this were true, why didn't she stop and say "I'm sorry" and help him pick up his books??? And why did witnesses say it was a boy??? Then, the principal pulled something that I find despicable. He read the e-mail to Austin. The confidential e-mail Steve and I had sent to the guidance counselor, not the principal, the one that is being sufficiently ignored by the GC. I am so angry. He had no right to share what we said in that e-mail to Austin. If I wanted Austin to see it, I would have read it to him and signed his name, along with ours.

The best news yet is that the principal is retiring next year and the wonderful guidance counselor (note sarcasm) is taking over as principal. Fabulous...just fabulous. Yet another thing done by our wonderful school boards behind parents backs. Just an announcement in the paper that she had been hired.

Another incident

2008-03-26T14:36:00.000-07:00

Today I arrived to pick up Austin from school and someone told me that Austin had been shoved down in the hallway and all his books went flying. When Austin got in the truck, I asked him what happened today and he said nothing. I kept at it and he finally told me. He then informed me it didn't matter if he said anything or not to anyone because noone would believe him anyway. Pretty pitiful that he cannot trust the adults at his school to stick up for him anymore.

Steve and I wrote a strongly worded e-mail to his guidance counselor. The last one we sent she pretended to never recieve so we shall see what happens with today's e-mail.

An Improvement

2008-03-24T14:31:00.000-07:00

Today we met with Austin's therapist for our regular appointment. I am really sick and tired of every time he is about to get into trouble, or is in trouble, he slams up every single step, slams the door to his room as hard as he can, and the slams stuff in his room, loudly. He keeps saying that it "gets his anger out." I told him to go out back and beat the oak tree....that would cure him of any need to hit/slam/stomp his anger out of anything ever again. He refused.

So today that is what we discussed. Dr. Paul is in agreement with me and says that what he is actually doing is fueling his anger, rather than helping it. So, now, he will recieve a ticket for every single time he slams/stomps/hits something with his punishment on it, which he then must "pay."

We got home and almost immediately got an oppurtunity to try out the new system. I gave him a ticket and took it easy on him...only made him shut the door quietly and politely ten times. I told him that is the easiest it will get.

So far, so good....we haven't had a need for another ticket today!

Amazing Calm

2008-03-13T10:01:00.001-07:00

I think Austin realizes just how close he came to being in A LOT of trouble. He's been much more agreeable the past day or so. I know it won't last long, but I love it while it's here. I've asked him to bring in dishes, just once, and he did it. I asked him to help set the table, just once, and he did it. Feed your rabbits....done. Correctly!!! Play with Aidan? He did!!!

While he's already severly irritated by Aidan, no surprise, at least he's being a little less difficult with me.

We had his "student-led" conferences yesterday. Can I just say this is THE single biggest waste of time??? Steve comes home early from work, taking off 1/2 day to stay home with everyone, while I drive over to Freddy to sit with Austin and have him show me his papers, mid-term, and tell me how things are. Which is, essentially, "fine." Or, to the many questions "What's this assignement," I recieved, "I don't know." All the while his advisory teacher sits there and does nothing. That's right. We're now paying our teachers to NOT do conferences. Austin may be in the minority, and I may also be, but this was pointless. I hear more about how things are going from him at home. Conferences have always been something we go to, but that is almost pointless for us, also, because I am in constant contact with all of his teachers and always have been. But it's good to sit down face-to-face with the teachers and talk with them. We were given a survey at the end of the little "student-led" conference that asked if we prefered this year's format (something they've been doing for a while) or if we want both conferences to be teacher-led. Is there really a question??? Do some parents honestly prefer to have their student do the conference??? I would be amazed. So, that was a royal waste of the 10 minute conference, plus the 30 minute drive time.

Afterwards Austin and I went around town and put up all of his for sale posters for his rabbits. Now I just pray we get them sold! They are getting huge and we don't have room for this many rabbits! One "little" fella was over four pounds!! Breed standard is 3-3 1/2 pounds. Poor little guy is going to have to be someone's pet. Unless he's shown in a commercial class. He's not even finished growing....he's got two more months! Maybe he's got a little extra, this-is-a-cold-first-winter fat on him that'll go away?? I doubt it. We also have one runt who is absolutely perfect breed standard in every other way, but I don't think she'll grow enough to keep her. She weighed in at 2 lbs, 3 oz. Steve and Austin have decided to keep two or three out of this litter, which means we have to sell 4-5. And she's pregnant again, so they have more from the next litter to keep and sell.

The Verdict Is....

2008-03-11T14:35:00.000-07:00

Apparently there isn't enough evidence to convict Austin of any wrong doing. That doesn't mean that any one of us (Steve, me, or Mr. H) honestly believes absolutely nothing happened....it just means he is not getting in trouble this time. Thank the Lord for that!

Austin and I had a talk and we discussed the extreme importance of always telling the absolute truth....not trying to find that loophole and just admit to what he did do, rather than what he technically did not do. Hopefully this will be a lesson that will stick. Time will tell.

He did talk with Mr. H about T1, C, T2, and J and the principal did not believe him about C bullying him. (That's the family he is "friends" with.) He did believe him about everyone else, though. Now we can maybe try to move on from this and somehow find a solution to all the bullying.

Is it too much to pray for a few dull days the rest of the week????

The Dilemma Continues...

2008-03-11T09:36:00.000-07:00

After speaking with Austin last night, we now have more questions than answers about what actually happened yesterday at school. When Mr. H called me, I was immediately ready to believe what he was telling me, due to what was said. Austin has a bit of a problem with echolalia and will just repeat what is said to him constantly. He also repeats over and over what he says. So this seemed logical that he said it.

When we sit down with Austin and talk about things, we can usually "break" him (for lack of a better term) and get him to admit to what he did and what ownership he takes in the situation. He would not, for the life of him, admit last night to ever saying anything. He said that he just ignored this other kid, got his salad, sat down, and never said anything. I went at it from so many different angles trying to get him to admit to something, but he refused he did it.

Then some suspicious things came up. He said that this kid kept irritating him, laughing at him, and repeating questions to him. Mr. H also said that this kid admitted that he knew he was irritating Austin. Why would a fourth grader pick on a sixth grader he doesn't even know???? Austin then said that it was T's little brother. I asked him T's last name (because I knew this kid's name) and I informed him it wasn't him. Then, he said it was probably C's little brother. I asked him his last name, and lo and behold, it matched. I did not admit that to Austin, though. T and C have been two of the huge bullies this year along with J and T2 and B. Austin said they probably wanted to get Austin in trouble, but didn't want to involve themselves, so they got their little brother. I didn't say anything.

When I spoke with Mr. H today, Austin was correct about who's little brother it was. Now this makes me very suspicious. I know Austin isn't innocent and I highly doubt he said nothing, but I am questioning the entire situation more. And why this child isn't having to own up to his share in the situation is beyond me. He said that the mother of the child would like Austin to have severe punishment and know what that punishment was. Now this is where living in a small town really pisses me off. I was unable to ever be told what the punishment was when B said those nasty things to Austin and all he would tell me is that she was punished. However, because Mr. H is "friends" with this family (his admission, over and over), he "needs" to tell them exactly what punishment Austin receives. What?!?!?! Shouldn't it be across the board parents just need to know they were punished??? Or across the board all parents are told of the exact punishment??? Not if I know you, A will happen. If I don't, B will happen. It is utter and total bullshit.

The other problem is that supposedly, there were several other students at the salad bar, but there are no witnesses to what happened. Either noone wants to say what was actually said or there were no witnesses and noone else was there. No matter what, there is noone to back up either child's story and, according to the school's own policy, nothing should be done.

I am just getting very worn down on how little this school actually teaches and takes any accountability for what goes on in the school buildings. There were no teachers who heard any of this. Shouldn't there at least be a teacher very nearby to supervise the salad bar, especially when there are repeated incidences surrounding such destination? (Every time Austin's in trouble, it in some way surrounds the lunchroom and/or salad bar.) Something needs to change.

When I pointed out to Mr. H that this ultimately has to do with Asperger's, he just said he can't not get into trouble just because he has a disability. I don't disagree....not at all. However, there are things that can be done to limit these things from happening by addressing the Aspergers, which we are still steadfastly ignoring exists.

I am now waiting, once again, for a call on the decided punishment. If Austin gets another detention, he will not be allowed to go on the sixth grade field trip. It's really not fair, considering the other two detentions have been due to the fact that his homework wasn't turned in (due to his inability to organize, caused by, you guessed it, Aspergers).

I wish I could change all of this and make his life easier in some ways. In other ways, I hope this makes him a stronger person to realize the struggles he will have to daily endure for the rest of his life. If it's bullies now, it will be something else later. Nothing is going to just be simple for him, and that's OK. Because he will know that he has earned what he has received. But as his Mom, all I want to do is take this away...take away all his pain, his hurt, his hurtles and obstacles, and make it easier for him. And all I really can do is give him wholly to God and leave it in His hands.

What to do now???

2008-03-10T14:53:00.000-07:00

I got a call from the principal today. No big shock, really. Lately I feel like all I do all day long is wait for a call or e-mail from him or any one of Austin's teachers. He tells me almost daily of things that are happening at school. He is getting severely bullied, but because of school policy, he is usually the one in trouble. Thankfully, most of the time, the principal believes him. The school policy is that if two or more people can back up a story, then it must be true. How many bullies do you know who bully when others are around to stick up for the one being bullied??? Not too many and our district isn't any different. I guess they call this improvement, because until this year we had no policy at all. At any rate, two boys have been horrific to Austin for a few years, but they have really ramped it up this year because they have learned that if they stick together and continue to isolate Austin, Austin gets in trouble. So they have told on him for numerous things and a whole lot of swearing. If I didn't hear the names over and over, I wouldn't believe Austin, but I do believe him about this.

He has been bullied by a young lady this year also. She is really pleasant. She has told him and all of their classmates that he was the one to impregnate me with the triplets. Then, to top off everything off, she said that his "real" dad left him because Austin was stupid. That caused us quite the fun evening and a lot of questions he wasn't ready to ask. She stopped bullying him so much after getting into some severe trouble herself.

Well, today's call was about Austin. Apparently, he was at the elementary (where they eat lunch) and he was getting food off the salad bar. Some fourth grader was irritating him with questions about what he liked and wouldn't leave him alone. So, he told him he got his mother pregnant. I'm not sure who's mother he was referring to, but after the incident with B, I imagine he meant the other boy and the other boy's mother. This incensed the principal (as it did Steve and I), and now I am the one left to figure out the situation because Mr. H can't figure it out. To be quite honest, if Austin isn't telling Mr. H the whole story, he really isn't going to tell me the truth. I am supposed to report back to him tomorrow on what I discover. I know I'm not going to get anywhere with it, but I'll try. And then tomorrow, Austin will either be suspended or receive a Saturday school....either of which will royally piss me off and not bother Austin at all.

Part of the problem is that the school refuses to acknowledge Asperger's as anything more than bad parenting. It is a medical diagnosis and he does not qualify for any educational exceptions. We have fought for four years to get him an IEP, or at the extreme minimum, a 504 plan, but nothing happens. Which means he is completely mainstreamed with no supports whatsoever. Unless the teacher chooses to learn about it. Last year, we had an awesome teacher and Austin had an excellent year. This year, when Austin screws up, whether it be with homework, bullying, swearing, etc., it is instantly Austin's fault and he is harshly punished. Noone tries to work with him. Noone tries to see that his behavior is a direct result of Asperger's. Noone tries to help him. Noone tries to really educate themselves on Asperger's. Oh, sure, they read a paper or two. Do they try a book?? Do they try seminars?? No way....that would be asking way too much.

I am feeling at the end of everything and about to give up. I am seriously considering pulling him out of school altogether. We have looked at options with private schools, but if noone is willing to work with him, then he will never be fit to live and contribute to our society and we might as well quit trying now.

But I'm not ready to give up...quit fighting...quit seeing the possibilities. Part of the problem is that Austin is a very bright child and has an amazing memory. He is "blinded by his strengths" as one professional put it. I know he has potential and I know he can do great things if we keep pushing him and trying.

This Blog

2008-03-10T14:47:00.001-07:00

I am starting this blog because I need an outlet to vent my frustrations and fears and share my hopes and dreams for Austin.

Life with a child with Asperger Syndrome is the closest thing to daily riding a roller coaster that I have ever encountered....and I hate roller coasters! There are ups and downs, dips and valleys, and many changes in direction. I need a place where I can freely share all of that and process it. Hopefully, it will also make other parents aware that they are not alone in the struggles and blessings of raising a child who isn't "perfect."

I try to remain upbeat and positive on my other blog and is a place where I don't have to be. So if you don't want to hear about the struggles and daily battles we have, stick with our family blog. If you want to hear some of my frustrations and see that I am very much a human and struggling mother, then here's the place.