My son was just diagnosed.....

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Hello! My 11 year old was just officially diagnoses w/ AS on Thursday. They're also watching him for depression and a possible anxiety disorder...but those are not official yet. We went forward with getting a diagnosis to get more assistance in school. Now that we have it, my next step is to meet with the school case worker and his teachers. I'm not sure about getting an IEP right off the bat or if I should start with a 504. Does anyone have any recommendations of where to start? Any helpful info. you've learned about working with the school system I should be aware of? I've heard some horror stories, but now that it's time for the next step I guess I'm a bit nervous and unsure where to begin.

Also, even though we were pretty sure he had AS before the appointment....getting the actual diagnosis upset me a little. I guess it made it more 'real'. I'm excited about the new step to help him. . .getting him more of what he needs to succeed, but at the same time it hit me a little harder than I thought it would. ANyone have the same experience? I mean, no one wants anything to be wrong or different with your child, but I guess it caught me off guard since I went into this already knowing. Just wondering if anyone else had a similar experience when your or your child got officially diagnosed.

Welcome to WP, MammaCass325! While you are waiting for replies, browse through the Parent's Discussion section and see if you can relate.

Merle

An IEP gives you everything a 504 will plus some. In an IEP you can get services; in a 504 it is only accommodations. May as well get the IEP so that you don't have to start over if you realize services are needed.

As for the emotional feeling, yes, it really hits you. I'm not sure why, maybe its the setting, but I do remember that. It was an answer I needed and had been looking for with respect to my son, but it was still really hard to hear.

Welcome and everything your feeling is normal. Now thats out of the way go with IEP.

Welcome mamacass325,

It's 1.34am in Australia, so I'm not going to say much.

I have a lot of information on tailoring the IEP to aspies on my blog. It's probably worth a read.

and yes... I'd get the IEP asap. Early intervention is the key. (as is the special interest).

http://sites.google.com/site/gavinbollard/about-aspergers/The-Individualized-Education-Plan-IEP

Welcome to WP mamacass! I've can relate to what you're going through, been there and done it, and dealt with the shock with my now 14 yr old son. We first had him diagnosed at 10, but I wish we did it sooner. He's a great kid with lots of potential, he's my hero, and we have a very happy and fulfilling life, and I'm sure you can create happiness and stability too. My suggestions based on the school of hard knocks are:

- Be patient. It will take some time for the shock to wear off, its kind of like getting a new haircut and living with it awhile until its part of you. This was the hardest lesson for me to learn, and I have to continually re-learn it.
- Get the IEP as soon as possible, its a "living document" and can be adjusted, changed, etc. in time, but the important thing is starting the process soon.
- Talk to your son about what works for him in school and what doesn't, and build his input into the IEP. We did a lot of trial-and-error with the IEP that could have been skipped if I'd simply asked my son questions like "can you pay attention better when you sit in front of the class or in back?" and "would you like some private time in school to get some work done." We now have these "interview sessions" regularly, and my son's IEP has evolved into HIS IEP based on his input, not what I think he needs (though I have the ultimate say).
- You're going to want to read a lot and gather information and solve problems immediately, at least I did/do, but there is so much information out there that is impossible to assimilate it all and apply it to your situation in a short time. It has taken us years to get to this point, and we have many more years to go. So, back to suggestion #1.
- Lastly, spend time reading and participating in WP, this is by far the best place to get advice from people who have been there and done that, wish I had found it sooner.

Best of luck, and welcome again

I just wanted to thank each and every one of you for your responses and help! This community is definitely a relief and I'm looking forward to the years to come. . .and falling on all of you for support and assistance.

Thanks again! And please, keep it coming!
MamaCass

Hi Mamacass325,

My son who is now 16 years old was diagnosed with apergers about 3 - 4 years ago. He has always had problems getting on with others and the diagnosis was partly a relief to me. From the time he was in preschool we were threatened with his being expelled. It's a trying experience to have people tell you that if behaviors continue then your 3 year old won't be allowed to return.

He had a full assessment when he was about 6 or 7 (I'd have to look up the paperwork) and at that time it showed nothing about aspergers, and little positive came from that. So when the diagnosis came up with aspergers it was both a relief, but I was also a bit skeptical. I started reading about AS and jumped back and forth in my opinion that he had it, or didn't. After some time (months) of off and on reading about AS I realized that it sounded like me as well. That was a shock for me, but also made sense instantly

I had my girlfriend at the time do some reading to see if she thought that it sounded like me as well and after reading several different sources she agreed that it did.

I haven't lived with my son from the time he was 7. Up until last year he would spend every weekend with me, but the occasional one when I needed a break. As he got older he would spend the entire summer with me as well. Up until Oct 2008 when I moved from Calgary, Canada to Columbus, OH, USA to live with my new wife.

My son is now at a school that is a specialized campus for children with a range of problems (K-12). He appears to be happier in this new environment. Even for the month he was in the new school before I left he seemed more relaxed.

A few things that helped me in learning / reading about AS:

- AS people are not cookie cutter. One is as different from the other as NT people are from each other.

- We can be brilliant, but also not understand some things that come naturally to NT people.

- AS might run in your family. (I have several older sisters and about 20 nieces and nephews. After reading about AS one of my nephews became glaringly AS to me. I later found his name online in a support group. I've since talked my sister / his Mom about him being AS. It would have been helpful if it wasn't a secret shame and that I knew about it so I could look for it in my son too.) Genius also tends to run in familys with occurences of AS.

- Read differnt books. Temple Grandin is a wonderful AS success story. The one book of her's that I have read so far is "Thinking in Pictures" is enjoyable because it is the voice of someone who is an Aspie. Don't forget to use the public library, Columbus Ohio has a pretty good system, hopefully your city does too.

Sadly I don't communicate much with my son since I moved to the USA. He was here for a month, but it has always been difficult to get him to open up to me and talk, so it wasn't much different than before. When I call him on the phone he is usually very distracted and it annoys me when I have to repeat things because he seems to be watching tv or doing something else.

My new wife likes my son very much but sometimes he is difficult to get along with. If you are a single person remember that if / when you meet someone that they will periodically have to interact with your son.

Both my son and I like animals. I think that it's sometimes easier for people with AS to connect with animals. If your son is lonely an animal companion might be a idea, if your living situation allows it. My wife and I have 4 cats and 2 dogs. 2 of the cats we got when they were 10 days old. I needed to bottle feed them or they would have died. Otherwise we would only have 2 cats and 2 dogs. They are good support to me, especially as I don't yet have a job after moving to a new country and being unable to work (legally) until about 3 months ago.

When I was in my early teens I made friends with a group of other teens by playing a paper and dice game Dungeons & Dragons. It was likely an excellent source of me becoming more social than I would have been otherwise. Involving your son in something where a small group has a common goal might be an idea as well. My son did really well at learning karate a few years ago at the YMCA. I was highly impressed. There will be times when your son will suprise and delight you with his accomplishments.

I hope that you find use in my thoughts. I by no means am trying to tell you what to do, and hope that none of what I have said has offended you in any way. If it has I apologize in advance.

Good Luck!
Jon

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sirocco333
My new wife likes my son very much but sometimes he is difficult to get along with. If you are a single person remember that if / when you meet someone that they will periodically have to interact with your son.

So important thankyou for adding this we all have to keep our kids feeling in mind when making our life choices. My Birth father married a woman that hated kids and never wanted to have anything to do with my sister or I and it still is causing trouble. Now that we are grown he wants back in our lifes but we have a wonderful stepfather who adopted us and have no need for him. So in his old age we are fine and he's the one thats feeling alone and rejected.

Thank you Jon (sirocco333). NO offense, what so ever! Actually, my husband and I both played D&D as teens, my husband still does actually. My son is very interested in role playing and it's a very good hobby for him. Actually, his school just recently started a Star Wars role playing club and he has joined. He's made some good friends....and he seems to get enjoyment out of it as well. A wonderful way for him to interact with others, but use his imagination as well. Tends to be smaller groups, others with similar interests and he can pretend. ..perfect fit!

I just wanted to thank you for your suggestions and assistance!
~MamaCass~

sirrocco thanks for sharing. I don't think its ever offensive when people share their own stories.

My suggestion would be to go with the IEP. From what I have observed, if you start with a 504 it can be really hard to increase services later. Better to start with the most services he is eligible for, and then if you feel that you only need a 504 later, it is really easy to get the district to reduce services.

Another couple of bits of advice on the IEP....many districts will try to get away with putting in a code of "disabled" or something similar, and this code will exempt your child from important services he may need. It is very important that they use the code for "autism". Also...they will try to have you sign a paper for Medicaid, allowing the district to determine his eligibility for Medicaid and bill the system. This is a way for the district to essentially double bill for the services he receives. Keep in mind, even if he doesn't qualify for Medicaid now, he may in the future...and if the school bills for a service, it can limit your availability to private care (ie if he's getting OT at school, you don't feel it is sufficient and want to get a private OT...Medicaid will not cover the private OT because the school already billed for it). You do NOT have to sign this paper in order to receive services through the public school system. They are already getting paid once by the state.

Also be prepared for diligent follow up after the IEP is drafted. I have seen too many children get an IEP in place and then have no follow through and not actually receive the promised services and accomodations. It's really hit and miss depending on the individual school. My daughter's school has followed through to the letter...but I have a friend in the same district, different school, that ended up having to sue the district last year over this very issue.

I strongly recommend getting a good advocate to help on at least the first IEP. I know that after my daughter was diagnosed, I had some ideas about things I thought would help but since it's so new to us as parents, an experienced second opinion (and someone that has maneuvered the system before!) is a great help. We have been really lucky with the school we picked and they have been VERY easy to work with...but even with a really good school, our advocate recommended services that have helped tremendously and I wouldn't have thought of. And even with a great school, it is unlikely that the school is going to go out of their way to recommend services that you haven't thought of. With any of these plans, whether it is a 504 or an IEP, you do have a right to have things re-evaluated, but you are swimming upstream to add more services later so it's very important to cover as many bases as possible on the first one.

It is a lot like taking on a full time job to get everything in place once you have the diagnosis. But it does get easier once everything is in place....not just at school, but at home, too, once you start to see the positive impact of the assistance your child receives.

On a side note..the depression and anxiety disorders are very likely a side effect of the stress your son is going through trying to deal with his differences. My daughter also tested as depressed and having extreme anxiety at the time of her diagnosis. Both have pretty much disappeared since we got her what she needed at school.