Charades been droped, autism is obvious.

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Hi all, I have a 9yr old son dx'd with aspergers late last year. For 4 years now my parenting had been bought into question. I have been accused of everything from pampering him to wanting him to fail. The school kept telling me he was fine, they seen no signs of anything unusual. They allowed my son to join the local autism arts program just to shut me up. They denied my son would ever be entitled to any form of funding. I explained to them in every way I could think of that, my boy wasn't coping he was having major meltdowns at home, and I could see the physical mask sweep over his body the minute he stepped into the school yard at the start of the day. I told them that I had witnessed bullying (No not at their school, according to them)
The charade/acting on my sons behalf has been slipping, since starting at the autism program he has become more and more comfortable being himself, he is having less meltdowns to, Yay.
Now his teacher isn't coping aswell, he is a lovelly kid with great intentions but he has some challanging behaviours. Eg his need to talk about his interests without allowing anyone else to get a word in, his lack of motivation/focus with tasks that he doesn't have any interest in. His need to share his knowledge on obscure facts. His ability to completely shutdown. His very literal interpretaions, his very ridged thinking and thought patterns, and his social inadequcies (Icant spell sorry).
Now that his teacher is seeing these things (and this is just the start I'm sure) she has addmitted to me that she isn't sure how to help him, her words were We are on a huge learning curve, I asked her for some advice on how to handle a certain situation and she said She knew very little about autism I would know more than she did. Whilst its a big YAY to those coments. Its still extremely frustrating, he spends six hours 4 times a week with someone who addmittedly isnt sure how to help him.
I have spoken to our schools vp, she to has done a turn around. The possibilty of funding will be getting looked at. I have decided to really make his every need know and make a pest of myself by pointing out his every difficulty, things that I had stopped telling them and I was dealing with myself. The more they know of his difficulties the better his chances of getting help.
We have added to his teachers work load the need for her to be monitoring J for possible seizures, something which is almost impossible in her situation without an extra set of eyes to help.
I guess Im writing all this now, because Im sure there are other parents in my situation, and I just want them to know they are not alone. You need to be your childs voice and you need to keep persisting. Hope is sometimes there.

Cheers guys I would have given up long ago had it not been for all the wonderful support from you guys, complete strangers.

I'm so glad your getting help and the school are finally seeing what you have been telling them for so long.

I remember many of your earlier posts. I am so glad to hear that there is progress. A long way further to go, but progress.

Interesting the connection you've seen between acting autistic and having less meltdowns. I've noticed the same thing in my son. I guess it shouldn't be rocket science to understand that trying to be what you aren't is super-hyper stressful, but at the same time it is difficult to connect that chewing or pacing or talking obsessively are actually inherent NEEDS in our kids, not just quirky behaviors to be managed.

Can I try and help with what I have noticed with J?
It has taken a long time and lots and lots of encouragement and having him meet other aspergers kids his own age, doing what they like to do, for J to now be able to know it's ok to be himself. I don't think just me his NT mum saying its ok to pace its ok to sing or talk to yourself is enough, because you know what? In an NT world in mainstream school realisticlly it's not, he will be critisized and picked on or left out. All kids are striving to fit in and as a mum and NT its even harder for someone like J who is very intelligent to accept just me saying its okay to be different when he has had to deal with the reality.

As a family we have also put de stressing things for J in place ie he has first prefrance to the pc, xbox,playstation tv etc after school. He doesn't get questioned about school until enough time has elapsed from actually getting home even then its minimal. We keep a fairly strict routine, we have learnt his limits but we as a family are prepared to change if his needs change.

We still have along way to go and a lot more to learn, but our best teacher is our kids I know it is for me. I listen to him, read his body language watch his moods try to work out his triggers. (what sets him off one day may be fine the next though) Sometimes it may take a few days or even weeks to work out what set J off, but I have found there is usually something very valid in his eyes. I have also learnt not to try to make him fit in always, thats just not fair. Pick your battles. Who is it going to hurt if he paces the room, its annoying sometimes but thats my problem not his. I save my battles for the bigger stuff, well I'm trying to.

Hope I didn't sound to pushy, I didn't mean to just thought I'd share whats working for us right now.

Annie2, I agree with Aurea said. Pay attention to your child; pick your battles.

With my son certain behaviors are very necessary for him to de-stress and center himself. Pacing is HUGE with him. Crossing the room, bouncing off the furniture or walls, then going the other way is something that he seems to literally need. Once we choose to allow it, instead of constantly trying to restrain it, there was a noticeable reduction in my son's meltdowns. In some ways it's thinking outside of the box as a parent. Trying to focus on what is best for the one child, instead of following the norm. Is the norm for people to allow a child to basically destroy the sofa by crashing into it? Of course not. We would all like a nice home, and we try to teach our kids to respect what is in it. But after reading many Aspies talk of their need to pace, and what it does for them, I experimented with allowing, instead of protesting, that particular behavior. And it helped my child a lot.

Some kids do great having swings or trampolines instead. That would be less stressful on the home decor, lol.

Another thing I decided to stop fighting was my son's need to chew. Now I just hand him a straw or some carrots. For some reason, chewing helps him think.

At school, he is allowed to squirm and sit funny in his chair, and chew as well. He has to save pacing for recess and the field, however.

The choice we've made together with our child is that home should be the safe place. Where he can act as he wants with limited criticism or attempts to change it. In public, there are rules to follow, and he is aware of that, and able to generally conform, as long as he knows he can release it all later. The main complication we have (as do many other families here), is that my husband is also Aspie, and has certain sensory issues. Sometimes my son's behaviors crash head on into my husband's sensory issues, so what de-stresses one ends up stressing the other. As a result, things cannot be completely free for my son. We have to look for balance on a few things when my husband is home.

It takes a while to figure out what behaviors are actually necessary for your child, that fill useful de-stress functions, v. what are simply annoying behaviors. Allow the former within reason; do as you wish with the later. Basically, we know what we got right by seeing the effect on my son's temperament. Allow the right things, and he self-calms really well. Don't, and the stress builds up, increasing the volume of melt-downs. There is definitely a connection, and it's worth exploring.

Thanks Aurea and DWaMom - that is interesting to think through. I think we have created a similar environment for my son at home - he is pretty much allowed to be himself, unless it impinges on other people's "happiness" (ie. needs to show proper behaviour and thoughtfulness to sister and brother). The meltdowns mainly happen at school. In the last week I made him a tick-list to find out what would help him calm down at school. It had about fifteen things ranging from going for a walk, get a drink, sit on his bean bag, use his "calm-down box". The only one he ticked off the whole page was "shooting 20 netball hoops". (At home he shoots hoops every hour or so. I had always thought this was a "special interest" until I saw the tick-list and started thinking that this may actually be what he's doing to regulate himself?) If that is the case, then should I be suggesting this possibility to the school to use when they can see he is heading towards a meltdown?

It does sound like your son uses hoops for self-calming. You won't be sure without trying it, of course. It might be a difficult one to get the school to agree to, but I would ask. Seems like an easy alternative if you can get them to agree. Special permission to walk outside and shoot hoops when feeling the build up to a potential meltdown. One problem is going to be that every kid would like that option, so it could be difficult to explain the special treatment to the other kids. Another is going to be how to limit it to situations of need, v. simple desire (even AS kids need to learn that they can't everything their way just because it makes them happier). There may need to be a set number of cards in his desk per week that he can use as hoop passes no questions asked, but once those are used up he will have to go to the teacher and justify it.

I find that motion is a very important part of my son's self-calming, as well as something that will completely absorb his focus so he can tune out the world completely (when he paces, he creates whole imaginary worlds). Hoops could definitely be serving those needs.

You are your child's advocate. His one and only voice to the school district. Don't give up.

I just went through something similar with my son. The rigidity was shutting down our family. He was constantly in conflict with everyone to have things done his way. First we tried the casien and glutten free diet. Some improvement, but not enough to stay with it. He is not allergic to the glutten and he was very limited to choices by that diet, he doesn't like most foods. We tried ADHD medicine, some improvement noted there. He was able to function better at school, but the rigidity and extreme emotions continued to be at the heart of the issue. We changed psychiatrists (because the old one wasn't well versed in asperghers), and the new one put my son on Abilify. Our house has known peace for the last week. My son takes it with chocolate sundae syrup. I can't wait to see how he does in his school this year. He is still my son in personality, he is just calmer, and less anxious.

The only services he was receiving was speech and language. We put him in private school because we thought the environment was better. The school district wasn't very helpful.

We don't stop son from acting autistic. He himself holds it in at school, but when he comes home and goes to his room we hear him talking to himself, laughing at the videogames, probably stimming, letting out loud noises, etc. Who cares? I think this helps him hold together at other times, although we don't tell him he has to hold together. He just does. He seems to have a keen awareness of what is appropriate in front of his peers and he waits until he comes home, where he knows we accept his quirks completely, to do them. Sometimes my NT kid will say, "I hear L. acting autistic again." But she grins. She loves him too.

Gee, you would think that in Australia they would know more about Aspergers, Tony Attwood and all.
Anyway, I don't remember your posts but I do remember your name. Must be a relief to finally be heard.