Aspies For Freedom

Hello.

My son is six years old. He has been diagnosed with both Aspergers and high functioning autism. He has comorbid conditions that have been diagnosed as Generalized Anxiety Disorder, Sensory Integration Disorder and Auditory Processing Disorder.

He is a sweet, charming little boy who is deeply intelligent and attached to adults who love him. He is affectionate and has a great sense of humor.

He is exhibiting difficulties in interacting with his peers at school and outside of school as well, relying heavily on me to act as a buffer. He has an aide during lunch and recess at school, and it seems as though he uses her as a social translator, asking her to help him ask special friends to play, etc.  He is exhibiting learning difficulties as well, specifically with reading and spelling. His ability to write has improved dramatically over the past months since we have increased his time with his occupational therapist and gotten him involved in therapeutic riding. He is a great horseman and has begun beginners vaulting, or horseback gymnastics. He has relatively profound gross and fine motor delays, so this is a huge step for him, and he really enjoys the riding lessons. He is not as fond of the OT time, even though he likes his therapist. The work is hard for him but his ability to use his hands and body have so greatly improved. He doesn't WANT to help himself though. He wants us to dress him, wash him and clean him, brush his hair, his teeth, etc.

He has problems with expressive language but is highly verbally fluent, and has great syntax and pronunciation. He can tell you anything you want to know about carnivores, gravity, Star Wars, Batman, animal habitats... it goes on and on. He's quite the talker. He does receive speech therapy at school, in the speech room in a group setting to work on social skills and communication skills. They do a lot of game and role playing in there, and work on things like staying on topic, etc.

I think talking is his stimming: he shows few signs of physical stimming but my goodness can he talk a mile a minute when he's stressed.

Here's where I am getting concerned over my own well intentioned advocacy for him.

He is currently in the general education environment with resource pull out time. He spends him mornings in the resource room, and afternoons with the general education class doing lunch, specials such as science, art and PE, and then math. He is doing alright with his math work although he is definitely not up to speed in terms of where his fellow classmates are. That's fine; I didn't expect him to be a whiz or anything, and I feel like he is gaining a lot from the experience.

He has trouble verbalizing how he feels about school, or else is just not willing to do so for whatever reason.

I am striving right now to provide him with the best oppurtunities: we are going to a mediation hearing with the school district soon in order to stop them from moving him from his neighborhood school over to an autism class at another school.

He was not provided an aide or the assistance that he was guaranteed in his IEP, and as a result, has had a few hard days at school. We hired an attorney and filed a complaint with the Office for Civil Rights in order to facilitate his receiving services. He has since gotten his aide for lunch, but that's it.

Since we filed that complaint, the school district decided to try to change his placement, and in order to stop that, we have had to file for due process. We feel as though they want to provide his services in an environment where they are already at, rather than bring them to where he is. We really feel that with some minor accomodation, he will be able to go to school pretty much like other kids do.

It's a big tangle.

Here's the thing: One of the things that he was not provided that he was supposed to have been provided is ABA therapy. I can see that none of you seem to think highly of this at all. I guess I am afraid right now that in so fiercely advocating for him, I am forgetting about the child that is. The child I adore. I am seeing him change and while some of that might be the simple act of growing up, some of it might be all the intervention I've suddenly started applying. He attends a social skills club twice a week for nearly three hours each night and it is based in behavioural intervention therapies created by Dr. Ron Leaf. Basically, I guess, ABA. No aversives are used and instead a reward system is in place. The things they are working on with him are staying on topic, approaching other children to ask for help and to solicit play (he constantly expresses that he wishes he knew how to ask kids to play with him so that's why I asked them to focus on this), self help skills (he won't or can't dress himself so they work on putting on his jacket) and attending. Not eye contact, just paying attention to things like knowing when he should ask for his turn and knowing what the topic of conversation is.  He leaves these meetings, as he calls them, very happy and content, but says he doesn't like the kids. Since we've worked with them one on one, I trust that he likes the adults and even the methods, but he REALLY dislikes the other children at the social club.

We are also trying to seek sensory integration therapy for him. I think that is discomfort in the world largely lies in this area.

I realize I am rambling.

I want to do what is best for him. I want to help him be the best HE can be. Not someone else. I don't want to change him. I just want to give him the tools he needs to safely and effectively be who he is in the world. For the longest time (okay since he was three) we have gone the low intervention route. He was in school, in special ed programs, but they were non-categorical and basically focused on pre-academics and teaching him how to be in school. As he has gotten into first grade, the interventions have been piling up and now, as I want to make sure his needs are accomodated in the mainstream environment, we are seeking more. He needs them to function at school and would need them really, even in a special ed only setting.

My issue with change of placement to a more restrictive environment is that I think he deserves the chance to be educated alongside all types of people. He deserves the chance to be who he is in the greater community. As he spends part of his time in resource, he is with 'disabled' peers for part of his day but to place him in a class that is only for him and is typed specifically to his diagnosis seems premature. Besides, it would be even heavier in terms of the amount of interventions received.

I guess I'm at a crossroads. He is beginning to realize he is different, and I am searching for how to tell him what the NT world labels him as being. No one I know has offered me any advice on this either. What do I tell him? Why is it a secret? If he was blind he'd know. If he was in a wheelchair, he'd know. I've been advised not to label him to himself, but he's already labeled. Why keep that from him?

I realize I have just made a pretty incoherent post. I realize I am dumping a lot on people who have never even spoken to me. I am quite afraid that some of what I am thinking or saying is offensive or misguided, but that's why I wanted to say it, really. I can't know the truth unless I ask for it.

I just want to help him be in any way I can. Just to be. I want him to love himself and be happy with himself. He is such an amazing child! Everyone who meets him is just amazed by his presence. No one dislikes the boy. He does struggle though.

If you made it through this, and have any ideas or advice, please share it with me. I'm not posting this for support but for honest reactions, if you would be so inclined to give them. I don't want to hurt my child by trying to help him.

Thank you.

Hi Pieface and welcome, I like your name, its like the Beano character (kids comic).

He has been diagnosed with both Aspergers and high functioning autism.

I'm not sure what doctors told you at diagnosis, but aspergers is the same thing as high functioning autism, maybe thats what they meant.

He is exhibiting difficulties in interacting with his peers at school and outside of school as well, relying heavily on me to act as a buffer. He has an aide during lunch and recess at school, and it seems as though he uses her as a social translator, asking her to help him ask special friends to play, etc.

I think he is finding a way around the problem that he has, so using the aide to help him is a positive way of coping. He can learn from that, and develop confidence without feeling confused and overwhelmed.

He has relatively profound gross and fine motor delays, so this is a huge step for him, and he really enjoys the riding lessons.

Does he have dyspraxia?

He doesn't WANT to help himself though. He wants us to dress him, wash him and clean him, brush his hair, his teeth, etc.

It may take him a longer time to develop self help skills, maybe he finds sequencing of the tasks to be difficult.

He has trouble verbalizing how he feels about school, or else is just not willing to do so for whatever reason.


I would expect that, does he also have the samr trouble saying how he feels about people in general, and describing his emotions?

He was not provided an aide or the assistance that he was guaranteed in his IEP, and as a result, has had a few hard days at school. We hired an attorney and filed a complaint with the Office for Civil Rights in order to facilitate his receiving services. He has since gotten his aide for lunch, but that's it.

Good for you, standing up for his rights. Its often a battle with education facilities.

Regarding changing to another placement, being included in a regular school is not always the best option, it really depends on what benefits the child most.

I guess I'm at a crossroads. He is beginning to realize he is different, and I am searching for how to tell him what the NT world labels him as being. No one I know has offered me any advice on this either. What do I tell him? Why is it a secret? If he was blind he'd know. If he was in a wheelchair, he'd know. I've been advised not to label him to himself, but he's already labeled. Why keep that from him?

Just explain to him that he has aspergers, and that lots of other kids do, and they are like him. If hes confused at first, reassure him that everyone is different in some ways, and he is unique and it will make more sense as he gets older. To some children it can be a relief to realise that there is a reason for why they feel different from other kids in school.

A suggestion for the dressing thing, for my son used not to want to do his dressing himself, either. I knew he could do it, but he did not want to do it. I am still not sure, what the reasons were. Could be that he did not want his routine (being dressed by someone else) changed or that he'd have to concentrate on what he had to do a lot or something else.

It helped, when I put him some notes in the room where he used to dress himself. They said something like: First undress clothes, second wash/clean yourself, third put on new underwear ... and so on. After a while he memorized it and it became more "automatically". Make sure you make notes of all things you want him to do, like putting the dirty clothes in their place, and put everything into a strict order (which should be logical) that you would not find reasons to change too soon. When he is growing he will be able to do more things on his own and the plan can be extended, but you'd better talk to him about such changes first.

My son is 8 now and I still try to make a plan for his day that he can look at and know what to do when (like, when he has a therapy to do and should finish his homework first). I even write on the plan when he has free time for himself to do what he wants. I think that is important to see that beyond all the "must do's" there's still time for "want to do's".

Anyway, it is your son and you know him best. Do what you feel is best for him and works well with all of you. There's a lot of different ways to get where you want to go with him.

Sibylle

Trying to get assistance through the school department can be difficult and confusing, but you are on the right track.  

Have you thought about inclusion?  Your son would get the assitance he needs inside the classroom.  An IEP is always good and you should not sign unless you agree with the whole plan.  Plus don't be intimidated when they say something like sign the plan as is so that your son can START to have services now and work on the rest during the year.  If this is a must, add somewhere that you do not agree w/ the IEP as a whole and look forward to the changes.

What helped us was outside services. Most insurances cover this.  I went to my local childrens department in a resident hospital and found an OT department.  The theraist was a young girl but she was willing to work hard and my daughter progressed rapidly.  She gave great ideas for at home.  

Always remember you are your child's advocate and you know him best.

My mom did this for me:

she would lay out my chothes on the floor in order in which i was to put them on. underwear socks pants shirt. and under the last one she sometimes put a surprise for me like a toy or some other treat.  I can change myself now! :wink:

good old Mum!  :smile:

I could empathize with much of what you wrote.  It is very difficult to know when to work on a skill, and when to just let your child be.  My sense has been that some skills are necessary to get around in this world, and those my child has to learn.  Does he need to have perfect social skills?  Not really, as long as it doesn't bother HIM.  To the extent not fitting in bothers him, I try to help him learn how to fit in, or how to help kids see his point of view, and how to choose when it has to be the former, or when he might try the later.  We talk about compensating and adapting, not about changing who he is.  I have no way of knowing if we're reaching for the right balance; all we can do is our best.

From your descrptions of your child, I, too, would be reluction to have him in an all Autistic class.  My son's school hosts a special day class for Autistic children, and the differences between them and my son are clear.  True, my son is light Aspergers, but so far he has been able to relate to all the children on the autistic spectrum that are mainstreamed in his school.  Even though the mainstreamed children don't seem to be drawn to each other for friendships, they can see their similarities.  My son, however, has nothing in common with the more severely affected children, and spending all day every day with them would, I believe, send him further into his own world than he already is.  He does best surrounded by children willing to read and understand him, and who draw him out.  That is where he wants to be - with the regular kids.  He just, well, wants them to take more interest in the things he wants to do, as is to be expected.

I think we walk a fine balance with our schools.  You HAVE to be an advocate for your child, but you also have to keep the school believing you are their ally, and not an enemy.  I wish I could tell you how to get there, but I'm not sure I know.  We've been lucky - we're seen as ally's, and we haven't had to fight for anything we've felt my son needed.

I think the lunch aid and recess aid are fantastic.  These periods of the day have always been the most difficult for my son, and I can see how having someone to act as a buffer can make your child's day go much better.

Have you been in the classroom much?  I've found having a presence at the school and volunteering for various field trips and other activities allows me to do a little subtle spying.  It also allows me to make friends with the children in my son's class, which improves his chances at making friends.  I don't volunteer to help in the classroom, because my son has an issue with me being "there" but not fully available to him, but there are other ways to be around the school and involved.  It's given me a lot of insights I doubt I could get any other way.

Anyway, I know I haven't provided any answers.  I'm struggling with it all like you.  But, maybe, if we can all add one more piece to the puzzle, we'll start to have a pretty good picture of what we can do for our special and wonderful boys.

Best of luck to you.

You want to make sure that he not leaning overmuch on your or the aides assistance. he maybe depending on your for too much. I would ecourage(Not force) him to socialize more on his own. Take him a tad out of his comfort zone.  It maybe get him to be a little les depented on his trusted ones. This is specially good if the school board remove his aide or assigns him a new one. And use postive renforcement always.

3 hours a night? That's a lot for such a little boy. He's doing well to have the patience to sit through all that.

I wouldn't make too many changes too fast. Being Aspergers, he probably won't like a lot of change and he needs time to integrate it. I'm sure he will become more independent in his own good time. Trying to force him before he's ready will only be counterproductive.

With the dressing, it would help to have clothes that are very easy to put on and take off. Avoid shoes with lots of buckles and clothes that have fussy and fiddly fastenings. Also, some of us don't feel the cold as much as other people do.

He's just young yet, so there is plenty of time for him to develop the various social skills.

This might not be much help, but one thing that really helped with my son with dressing, and getting ready for school in general was a laminated chart with pictures of each article of clothing in order, then each item to do in his daily list of things to get ready... lunch, homework folder, backpack, coat hat mittens, smooch, etc. It has no words, just pictures, and he marks it off with x's with a dry erase marker by himself. The love of stucture and routine keeps him right on task.

I have tried things like that myself, but I think that without someone there to remind me, it's easy to forget.

I dont have any advice but I remember when I was around 8 or 9 I left school & my mother was on the verge of crying. We went home & I didnt think anything of it. Quite a few years later I found out she was telling the Principle at my school I had Tourettes (Not AS but its a similar situation) & the Principle told her there was nothing wrong with me, I was such a polite child & never made any trouble. She basically laughed at my mother & told her she was a moron. Even a bunch of doctors told her she was stupid for thinking I had Tourettes. My mother had almost given up trying to prove I had it but a doctor referred us to a specialist in the city & the minute I walked in the room she told my mum "He definetly has Tourettes". That was the biggest relief of my mothers life, somebody actually agreed with her, & now she could throw it into the face of all the lously doctors in my area.

I know its not really AS related but if you know there is something different about your child dont give up, sooner or later u'll find some1 who will realise ur right. Couse this was about 15 years ago & AS/Tourettes/a bunch of other stuff wasnt as widely known.

Oh a tip. If a child with AS is REALLY naughty a great way to punish them is to make then stand in the corner of the lounge room (or any other room with a few people) facing the wall. It works best if there r a few people ur child isnt overly comfortable with in the room. I remember crying the whole time, Cos i thought they were all stareing at me, of course they werent even looking at me but I didnt know that. Id only use it on the worst occassions though, u dont want to scar ur child for life & only make them do it for a few minutes. I HATED it when my mother did that to me. It only ever happened once, I never did what I had done to get put there again & i behaved for like the next year literally.