The reality of the diagnosis.

iVillage Member
Registered: 11-07-2004
The reality of the diagnosis.
14
Sat, 08-19-2006 - 1:29pm

Ok, I had read everything under the sun about AS and toally knew it was my son, so when I got the official diagnosis I wasn't surprised or upset. From everything I read, I knew with the proper assistance we would make it.

We started 1st grade this year and I set up a conference with my son's teacher that ended up being about 5 days after school started. I told her after the meetign that I had hoped to come in there and tell her he has AS and have her be completely unbeliving and dumbfounded. However, that was not at all the case, she knew something was wrong pretty quickly- which sorta scared me I guess. She said he has a very hard time focusing on the assignments at hand as he is off in another world (probably the space shuttle world). All he wants to discuss in class is space shuttles. She said he has a hard time writing that it takes him a long time and she is constantly redirecting him back to the assignment at hand.

So, fast forward to the 1st homework assignment- writing his spelling words (10) 3 times each. OMG, it was a nightmare. I litterally had to sit right next to him and CONTINUALLY redirect him back to the task at hand. When we finally finished I left the room and cried because it really dawned on me how much help he is going to need in order to get through school.

I sent my official letter to the school and they responded immediately. Their process required classroom intervention for a period of a few weeks to 45 days and the teacher reports back to as how everything is going. If all isn't well, then they begin evaluating him and determine if he will need special services. Unless they are complete morons, they will have to see he is going to need help.

Pages

iVillage Member
Registered: 02-20-2001
Sat, 08-19-2006 - 6:51pm
We are still in preschool and the thoughts of what the upcoming school years will be like is very over whelming.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 11-07-2004
Sat, 08-19-2006 - 7:10pm

This part caught me off guard because I have always known how smart my son is, but he is smart at memorizing things and about things that interest him. The whole scope of his school education is going to be a challenge I think.

His Dr. mentioned that schools will often provide laptops for students like him with writing issues. I am not so sure about that though- he needs to write. He knows how to but is painfully slow and disorganized at it. The Dr. says in this age of technology she doesn't think the student is missing much on the writing concept. What do you think?

Avatar for googolplex
iVillage Member
Registered: 03-31-2003
Sat, 08-19-2006 - 7:49pm

It sounds like the school is being cooperative, so that's good. I do find it odd that their procedure is to do the in class intervention for a few weeks before deciding if they will evaluate him. The law (IDEA) says that they have to evaluate him if you ask them to, period. If he's got an official dx of Asperger's, I'd think he'd qualify for an IEP, since AS is an autistic spectrum disorder, and autism is one of the disabilities that qualifies for an IEP. Then again, I'm assuming you are in the U.S., but I guess I shouldn't assume that.

I know the feeling of being kind of surprised and scared when professionals recognize right away that something is "different." Mostly, however, I find it reassuring that they agree that he needs individualized help.

My David is going into the 3rd grade, and homework has always been just as awful as you describe. This is a brilliant child, mind you. When he was about to enter kindergarten (the first time) our only concern was that he'd be bored, because he was so intelligent. Well, guess what? A page full of simple math problems still takes an hour, with lots of tears and yelling. David sees home as a place to relax and play. He has a huge mental block against doing school-stuff at home. His anxiety about it gets so overwhelming that he really CAN'T do the homework. It got so that our little bit of after school time was making our whole family tense and miserable. Last year, and the year before, he was eventually excused from homework, since he was doing fine otherwise, and we all realized that the homework assignments were doing him more harm than good. So, I totally relate to the whole homework thing. And you know, I personally think that 1st grade is too young for homework anyway. I don't think kids should have regular homework until much later. JMO.

Oh, and the stuff about your DS being in Space Shuttle world while at school...we're right there with you on that. David is into Bionicles and Lego stuff, but it's the same idea. When I look in his backpack, I find partially completed worksheets, and when I turn them over and look at the back, I see drawings of Piraka and Toa Hordika. His school journal is filled with stuff about Bionicles. He can write a ten page book about Bionicles, or space aliens, but if they ask him to write a sentence about an assigned topic, it's really hard for him. It sounds like your DS is kind of like that. It's so important that the teachers understand how AS affects our kids. It doesn't work to treat them like other kids at school, at least not in my experience.

I hope your DS has a good year, and gets the supports he needs. :)

Evelyn

iVillage Member
Registered: 11-07-2004
Sat, 08-19-2006 - 8:03pm

Thank you for telling me about the IDEA law because I was online reading some things trying to figure out if the school was doing the right thing or not. I thought it sounded a little silly to me with the intervention because I KNOW he needs more help than what the actual teacher can give him, however I assumed that was the process. Now after reading your post I am wondering if I should amuse them and let them "try" the intervention or not. The one thing I hate is wasted time and I feel like ever since we found out, time has been wasted. I am constantly waiting for others. We have been waiting for speech therapy, wiating of OT therapy, waiting for school and etc. So far, to date, nothing has yet to be accomplished. Now mind you he was officially diagnosed in May, but still I am one who wants to get this show on the road. I am thinking that if school takes 45 days for this intervention and then they have to evaluate- how long will that take? Hmmm, now you have me thinking.

Thank you!

Melissa

iVillage Member
Registered: 11-12-2005
Sat, 08-19-2006 - 8:42pm

I just wanted to chime in on my ds and his experience at school - he is 9 and has AS. I probably will sound anti-public school only because I am going to homeschool my son this year. I know that everyones situation is different and you CAN get help from public school - I know many people that have had great success getting help. I just wasn't one of those people - or didn't have the patience?

My ds was in a gifted school for 3 years and did fine... and then the magical year - Grade 3! things started to happen - my ds started to be bullied and his teacher became alarmed at his handwriting (she said "In 28 years of teaching I have never seen a student who had such large handwriting" -Gee thanks teach!) He started to have a little trouble listening to certain directions - because he has Aspergers! his brain works differently than other kids! and there are 26 kids in the class! (distractions are not good for a lot of Aspie kids when they are trying to process thing) If your son has any sensory issues at all the classroom may be a very difficult place for him to learn.

The other issue was the time wasted in WAITING, WAITING, WAITING for the IEP meeting, the consultation with the teacher, etc. He's the onlye kid with AS in the whole darn school and for anything to happen would take weeks and weeks. Did I mention that I am impatient and that I truly believe tha my ds doesn't have time to waste - he needs every possible minute to learn. I just couldn't take the bullying, unresponsiveness, the "noah seems to be doing great" (or in other words we don't know what to do for him) If he's doing so great how come he comes home from school looking like he's been through the wringer?

I have to stop now because the whole thing gets me too angry- we looked into private school but right now its not possible financially so we aren't sending him back to ps and after an initial "OMG what have we done" period I am now so thankful my son can be relaxed and learn in an evironment that is suited to his specail AS needs.

Like I said this is not anti-public school - you can get help - I hope you have a good school district, good teachers, psychologists, etc. that will recognize the severity of AS (reality not being harsh) These kids need extra help - you have to make them give it to you -you have to be a fighter and be patient! Something I wasn't able to do!
Good luck!
Jane

iVillage Member
Registered: 11-07-2004
Sat, 08-19-2006 - 9:26pm

I am like you when it comes to lack of patience. I swear ever since we started this whole process I am constantly chasing down people. Hardly anyone calls you back from the Dev. Ped. to the OT and Speech therapists and so forth. It is like I am the only person in the world with a sense of urgency. And it isn't like I am home all day with nothing to do but chase people down. I work full time and I still manage to call these people but for some reason they are just too busy.

I too have heard the horror stories of Public Schools. I am not sure what our school will turn out to be. I thought they were ok, until another poster pointed out that their classroom intervention is not in line with the IDEA law and that since I asked for evaluations (and have diagnosis) they should do it. So we will have to see.

I applaud you for taking on homeschooling. I am not sure if I could do it or not, but it isn't an option financially for us either. I wish I was home just to be able to manage everything a little easier. Although, I have a great boss that allows me to do what I need to do.

iVillage Member
Registered: 02-20-2001
Sat, 08-19-2006 - 9:50pm
You know there are therapeutic writing classes.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 02-20-2001
Sat, 08-19-2006 - 9:53pm
You know one of the things Tony Attwood talked about duiring the seminar I went to in April was that he didnt feel that AS kids should have do to homework.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 11-07-2004
Sat, 08-19-2006 - 9:57pm

Our OT wrote in her report one of the things she wants to work with him on is writing. Of course I am waiting for scheduling so we can begin.

BTW, was it expensive to see Tony Attwood?

iVillage Member
Registered: 02-20-2001
Sun, 08-20-2006 - 12:27am

No. I think there was a reduced rate if you were a parent. I think I paid around $100.

 


Powered by CGISpy.com

 

Pages