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frogmommy
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16 Jul 2012, 6:12 am

Hello, I'm new here and new to Aspergers. My son was diagnosed about a month ago and during a search for more information, I found this forum. Hopefully I'll be able to find answers and hope for my little guy.

I guess it would be best to start at the beginning. James started kindergarten a lil late b/c his birthday fell later and during his "kindergarten day" the previous spring, the teacher mentioned waiting a year and letting him mature more because he seemed over stimulated with the classroom and all the people. Before he started school, I was a stay at home mom, and he'd never been in a school setting before. So he started school at 6 and there were issues almost immediately. After 6 months of trying to work with him and get him used to the structure of school, his principal and school psychiatrist informed me I would either have to talk to his Dr about medication or he would have to go to another school with a "special class". I gave in and the Dr put him on Concerta. It seemed to work and everyone was happy... Until 1st grade..

The first week or so was ok, but then his teacher started calling me at work to come pick James up 2 and 3 times a week. His Dr said his body was getting used to his current dosage and gave me a script for a higher dose. This only made matters worse. We went back Otoh the Dr and he sent us to a local behavioral clinic where we were seen for literally 5 min, the "therapist" didn't even acknowledge James let alone talk to him, and all he said to me was "if I could cure stubbornness, I wouldn't have to work anymore" and gave me a bottle of adderol and sent us on our way. (I never once gave it to him)

My savior was actually my physical therapist. I broke my humerus bone and had brought James with me one day. Her son has ADHD and we had talked about the issues James and I had been having. Within 10 min of meeting him, she looked at me and said; "he's not ADD, he has Aspergers." I immediately went home and read as much as I could, went to his school, and told them about it. They had someone come in and test him, his teacher and I both filled out surveys and when the results came back, we were told he has Aspergers.

That's pretty much where we are right now. There are only 2 people in the area who deal with children with Aspergers, and they're both booked until Sept. I've read all of the same info over and over and I just feel so helpless. Like there is nothing I can do for him. He's a very bright child who loves to learn and I hate to see him stressed out like this all the time. Nobody I know has ever dealt with Aspergers and that's why I'm here. There has to be SOMETHING I can do to start alleviating his anxiety and helping him to cope with this. Thank you in advance for your help.



Chronos
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16 Jul 2012, 6:20 am

frogmommy wrote:
Hello, I'm new here and new to Aspergers. My son was diagnosed about a month ago and during a search for more information, I found this forum. Hopefully I'll be able to find answers and hope for my little guy.

I guess it would be best to start at the beginning. James started kindergarten a lil late b/c his birthday fell later and during his "kindergarten day" the previous spring, the teacher mentioned waiting a year and letting him mature more because he seemed over stimulated with the classroom and all the people. Before he started school, I was a stay at home mom, and he'd never been in a school setting before. So he started school at 6 and there were issues almost immediately. After 6 months of trying to work with him and get him used to the structure of school, his principal and school psychiatrist informed me I would either have to talk to his Dr about medication or he would have to go to another school with a "special class". I gave in and the Dr put him on Concerta. It seemed to work and everyone was happy... Until 1st grade..

The first week or so was ok, but then his teacher started calling me at work to come pick James up 2 and 3 times a week. His Dr said his body was getting used to his current dosage and gave me a script for a higher dose. This only made matters worse. We went back Otoh the Dr and he sent us to a local behavioral clinic where we were seen for literally 5 min, the "therapist" didn't even acknowledge James let alone talk to him, and all he said to me was "if I could cure stubbornness, I wouldn't have to work anymore" and gave me a bottle of adderol and sent us on our way. (I never once gave it to him)

My savior was actually my physical therapist. I broke my humerus bone and had brought James with me one day. Her son has ADHD and we had talked about the issues James and I had been having. Within 10 min of meeting him, she looked at me and said; "he's not ADD, he has Aspergers." I immediately went home and read as much as I could, went to his school, and told them about it. They had someone come in and test him, his teacher and I both filled out surveys and when the results came back, we were told he has Aspergers.

That's pretty much where we are right now. There are only 2 people in the area who deal with children with Aspergers, and they're both booked until Sept. I've read all of the same info over and over and I just feel so helpless. Like there is nothing I can do for him. He's a very bright child who loves to learn and I hate to see him stressed out like this all the time. Nobody I know has ever dealt with Aspergers and that's why I'm here. There has to be SOMETHING I can do to start alleviating his anxiety and helping him to cope with this. Thank you in advance for your help.


You might find the parents forum helpful. Generally it is easiest to give advice on specific issues phrased as specific questions.



Ilka
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16 Jul 2012, 6:42 am

Hi frogmommy. My heart is with you. Just for you to know your horror story is not that bad. Hope that makes you feel better. Now... 1) according to my experience ADHD meds do ot work on kids with AS. Unless the med is doing anything, you should remove him deom the meds until he gets attention from someone specialized in AS. 2) again according to my experience therapy is the best friend for kids with AS. You need a therapist specialized in working with kids with Autism. 3) I know thinking about putting your kid in a school for kids eith "special needs" sounds aweful and you might see it like the end of the world, but it might not be that bad. Our kid was in a school for kids with special needs for a year. Was there where she was diagnosed. It helped her big time in a moment when she was having a big issues with school. The next year we were able to move her back to a regular school. Remember: his problem is not intellectual, it is behavioral, so dont we so worried about his education. The most important ting right now is for him to learn to enjoy a school environment, which for them is very hard an takes a long time. To help him with the anxiety levels try to provide a relaxing environment at home. I gave my little one linden tea after school and before going to sleep (a psychiatrist told me it relaxes), and I also played meditation music. That helped her. I also hear about aromaterapy, but never tried it. Hugs.



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16 Jul 2012, 7:52 am

Hello miss,

I'm not a parent so I hope you'll excuse that but I had similar events happen with my mom and I when I was little. I had to wait an extra year to start school, I got given medicene for attention deficit disorder which made me gain a bit of weight and tasted horrible when I was a kid so I stopped taking it. My mom even tried giving my vitamins when I was a kid and telling me they where pills that would make me "better" which of course did not work.. Back then nobody really knew about asperger's syndrome and so I just struggled all my school years. But from my experience there are some key things that helped me alot in school and I hope you will consider them.

Special ed class is not as horrible as you think, I never needed help with my homework, My teacher would merely send me there whenever I would get overwhelmed or asked her. I would do this because I would always want a quiet place to work and my special ed teacher was a saint.. She had a special room for me that had a desk, bean bag chair, some dim-ish lights but not dim enough to hurt your eyes (I asked for this, she understood). My special ed teacher would even go above and beyond to make me feel better as my friend died when I was young which added to my problems in school, I will remember her forever.

I was also given more time on tests along with my alone time in my special ed classes which helped ALOT, the extra help when I needed it didn't hurt either.

I had a therapist when I was young (Because of my friend dying, but he would let me talk about anything I wanted) and that helped alot.

I was also very fortunate to have had teachers (when I was younger anyway..) that allowed me to bring a recorder into class and would sometimes help me write down notes as my handwriting was horrible and when I did write I would press too hard I guess, which ended up cramping my hand alot.

If you end up in parent teacher conferences at all try to explain to his teachers that if he is upset it will be because of something not obvious.. something in the background that the teacher isn't catching. So instead of being upset right away, try to tell them to maybe ask him what's bothering him or identify what could be distracting/upsetting/unbareable I can't explain how much it helps when background interference is gone.

People with aspergers tend to be very honest (sometimes so much so that we get in trouble socially), If your son comes home upset ask him about his day, he might be embarrassed to tell you what made him upset so do not tease or he won't want to explain how he feels or what it was.

Realize that your son might not understand things if you sugar coat them or are sarcastic with him or joking. So when you're explaining something to him (or anyone else important to his growth) try to be direct and clear as possible.

I find it wonderful that you actually care enough to read about how to help your son and I wish my mom was like you when I was little. Whatever you do, don't hit your child out of frustration, I realize this is easier said then done but you won't realize what he'll grow up with against you if you do. I'm a perfect example of this..

Be patient and your son will never fail you.



frogmommy
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16 Jul 2012, 10:04 am

Thanks for the welcome and advice. Ill be sure to go to the parents forum for more specific answers, I was just more or less giving an overview of where we've been and where we are now. He is off his meds now anyway because he is on summer break right now and stays with my mom while I'm at work, but I had read not to put him back on them.

The special class wasn't special ed, but a class for kids who acted out too violently to be allowed with other children. I visited the class, and for the 10 min I was there, 2 kids kept trying to stab the teacher with their pencils like it was a game. James' meltdowns weren't violent, and at barely 35lbs, his teacher had no problem removing him from situations that began to escalate. The problem was, the school couldn't put him into their regular special class because he tested too high academically, and it was a distraction to have him in the classroom (which I understood completely) I have a good feeling about next year. His teacher has been the head of his Student Support Team since kindergarten and I emailed her as soon as we received the diagnosis. She is also researching and looking into things she can do to help him in the classroom.



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16 Jul 2012, 11:14 am

Hi frogmommy, welcome to Wrong Planet.



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18 Jul 2012, 4:10 pm

Welkome to WP

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18 Jul 2012, 5:24 pm

Hi FrogMom,
Another bit on the positive side is you have gotten an early diagnosis. Keep your mind open, but assuming it's correct remember your son's case is definately treatable. It is now a matter of getting him the right treatment. Your doing what you need to do getting informed and involved and basically are now his advocate, and of course will probably be so for a long time.
Not all special ed classes are the same. In our state they are broken down into classifications like Life skills, Emotional Support, Partial Hospitalization, etc. As you have already discovered it would be important, were your son to go, to be in the right group. Professionals in the special ed field come in all grades, from excellent to not very good. But the good ones know a lot about it and could be very helpful. Doing what you are doing, getting in there and meeting the teachers and observing the class is absolutely the right way to go.
Most good teachers expect to have to be in close contact with the parent and it is the most beneficial situation for your son's development. There is not any one foolproof therapy. There are many approaches and it has to be tailored to your son. It works best if the parent and teacher communicate openly and honestly and in a spirit of co-workers. If the teacher or therapist is trying something, it works best for you to be on the same page and support that therapy at home. It also works vice-versa. Rules and consistent application of them is pretty key with Kids, but Aspergers kids in particular. Speaking to the teacher weekly or even bi-weekly is not too much.
Another suggestion is to get some books at the book store. There are many now on the subject and it will go into the depth you need. But be sure to read a few and get the collective sense of the state of the knowlege. This is not a totally understood condition and lots of research is ongoing. Two years ago the Federal Health department estimated 1 in 200 had Aspergers, last year they revised it to 1 in 100. This year it's down to 1 in 38. Your not alone by any means. Btw welcome!, though I feel stupid saying so since I only myself joined this morning! :lol:



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18 Jul 2012, 5:58 pm

Welcome to Wrong Planet!


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18 Jul 2012, 7:00 pm

Hi, welcome to WP. It's really bad tha tyour child's school insisted on meds. This is not a school's job. Then again I heard it's pretty common. I agree with the people who said ADHD meds won't do much good unless your son is also ADHD, which it seems he isn't. Therapy and acommodations are what work for most Aspies. I hope you find the support you're looking fo rhere.



purplemum
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21 Jul 2012, 4:29 pm

:D Welcome!