New to all this

[Guest guest]

Hi, there. My son is almost 13 and was only diagnosed with AS a yr ago. He has

struggled with health problems all his life, so his " intense " nature (and all

that goes with it) was largely attributed to all he had been through. Now we are

way ahead of the game, as we know what it is (and I had secretly suspected

autism since age 2 but with all the other worries, could not go there) but no

further ahead on helping him learn to " cope " or control his strong reactions. He

now has the appropriate help at school and does quite well while he is out of

the house (he has learned to hide it very well), but look out when he gets home!

All the anxiety, frustration and exhaustion come flying out and the rest of the

family bears the brunt. How much anger is " normal " for an AS kid verging on

puberty? When do you start to worry that they are out of control? He sees a

psychologist fairly regularly and it helps...but once back into reality all the

coping skills are out the window again...any advice would be most appreciated.

This is the first parent support group I have tried...for the first year we

tried to tell ourselves it was mild enough that we would be fine. Now, I am

exhausted and the denial has passed.

[Guest guest]

Hi, welcome! I'm wondering about his " letting it out at home. " What is it that

triggers the anxiety and other?

I have a son, now 21, with Aspergers and with OCD. The " letting it out at home "

and holding it together better in community just reminds me more of his OCD

problems. The kids can be exhausted from " holding back OCD " while at school or

elsewhere but explode when they get home (safe place).

Just a quick thought. My son was diagnosed in 8th grade with HFA/Aspergers,

though I already felt from elementary school...and earlier too I guess...that he

had traits on the spectrum. His OCD began in 6th grade, though he had his OCD

quirks before that, just not a big problem before.

single mom, 3 sons

, 21, with OCD, dysgraphia and HFA/Aspergers

>

> Hi, there. My son is almost 13 and was only diagnosed with AS a yr ago. He has

struggled with health problems all his life, so his " intense " nature (and all

that goes with it) was largely attributed to all he had been through. Now we are

way ahead of the game, as we know what it is (and I had secretly suspected

autism since age 2 but with all the other worries, could not go there) but no

further ahead on helping him learn to " cope " or control his strong reactions. He

now has the appropriate help at school and does quite

[Guest guest]



Hi Mark,

We are working on a pilot project at Cal Poly through Dr. Mike Ruef at Cal Poly San Obispo (is that the Cal Poly you are referring to?), supporting students with Asperger syndrome at Cal Poly. I am not sure the status of the project for next year, but you can certainly ask. www.autismspectrumcenter.com is the website for the Central Coast Autism Spectrum Center.

Debra Balke, M.D.Child Neurology of SLO1320 Las Tablas Road, Suite ETempleton, CA 93465(805) 434-0960 office(805) 434-0978 faxdlbalke@...Board of DirectorsCentral Coast Autism Spectrum Centerwww.autismspectrumcenter.com

( ) Re: New to all this Date: Friday, April 30, 2010, 10:26 AM

This is a note to Vicki - I'm in Northern California in the Bay Area and I found a support group through a private school for AS kids, where my son went to high school. The group isn't affiliated with the school, but the school lets them use a classroom once a month for meetings. If you know of a school like this in your area - maybe you can call and see if they have something similar like this? A church may also have something like this, too. The group was founded by four moms a few years ago. They take turns leading the meetings. When there isn't a speaker, we just go around the room and talk about a topic or share what's going on in our lives now. When we put our heads together, it's amazing how much we can help each other out. There's usually about 20 parents who come. I feel so lucky to have this group - but just wish I really had the time to follow up on all the information they have to share. We have an informal mailing list, but that's it. They don't have an online presence and so they are hard to find. I don't think that our group even has a name! One of my personal goals for this year is to come up with a way to share their resources online - maybe a blog or a webpage. We know about the resources that are local, but I'd love to hear what's going on in other places, too.My son started college classes during his senior year of high school and so he was already registered as a DS student by the time he graduated. The advice we got for college was for my son to not worry about being a fulltime student for the first year or two or to worry about a major. That he should start by taking a couple of classes where he has a good chance of success and won't be too anxious. And then gradually he can get the required classes out of the way and figure out what he wants to do. So that's what we are doing. He is registed with the disability office on campus and so gets early registration. He is purposely avoiding taking any classes where he might need other accommodations & I'm not looking forward to that time since he is doing so well now. He loves the classes he has (BUT I don't know his grades & so don't really know if he really is doing OK.) He actually joined a martial arts club and so spends most of Fridays working out with the club on campus. The other bit of advice we got in high school was for him to join a social group. I've looked for one for years and suddenly found one that he actually likes. So he does this once a week, plus an occasional private session with the doctor who runs this group. But he still does not drive. He can use public transportation though. Still insists on wearing a jacket all the time, even in summer. Still rarely talks to anyone. Still has such a long, long way to go.

[Guest guest]

Hi Doris, Welcome to the group. We would love to help you. For starters, what concerns do you have for your daughter? Does she have behavior issues at home or at school? Does she have sensory issues? If we knew a little more about what is going on we could give you more specific advice.

How are YOU coping? Do you have a support network? Does your daughter go to any therapies? Is she on any medications? What exactly did the school evaluation say regarding her needs. Are you having another meeting to develop an IEP?

I recommend going to wrightslaw.com and read as much as you can about the IEP process. Try to get yourself knowledgable as quickly as possible. The more you know the better you will be able to advocate for your daughter. Also, see if you can get an advocate to join you for your meetings. If the school thinks you don't know anything they will run all over you. That is just my experience and most people in this group. Unfortunately you cannot take for granted that the school will look out for your daughter's best interests. They usually want to do as little as possible. Now, you might be one of the lucky ones and be in a great school district or have a descent school. But I wouldn't count on it.

Let us know what questions you have. Everyone here is great!

ne

From: Dorris <abcdefinnegan@...>Subject: ( ) New to all this Date: Wednesday, March 9, 2011, 2:08 PM

Hi, my name is Dorris. My 13 y/o daughter received a diagnosis of Asperger's in Oct 2010...very late to receive a diagnosis but it ALL makes sense - looking at things from her childhood. Just completed the IEP evaluation with no education diagnosis of Asperger's because her grades are too good. Any advice on next steps?

[Guest guest]

Dorris,

Just because your daughter doesn't have any educational needs due to her diagnosis, the school is still required to address her vocational and pro-vocational skills. These are all her executive functioning and daily life skills. If you look up IDEA purposes it says that not only special education be made available to special needs children but also "related services disigned to meet their unique needs and prepare them for further education, employment and independant living"

You can ask the school how they are going to address your daughter's needs in these areas. I hope your meeting with the principle went well and you were able to get some help for your daughter.

My son is 14 and the school is finally doing more than just suspending him. They are trying several was to teach him social skills, ( role playing, video modeling, comic strip social scripts). Some things work better than others but as long as he is improving, which he is, then I'm fine with it. The school needs to help teach your daughter better ways to express herself that are more socially acceptable.

I recommend also checking out the website www.socialthinking.com , they have some excellent books that might help your daughter. I also recommend for you to get the book "From Emotions to Advocacy" from wrightslaw.com. Great source of information!

I too believe in staying true to your faith and pray for his strength to see you both through. ne

From: Dorris <abcdefinnegan@...>Subject: Re: ( ) New to all this Date: Thursday, March 10, 2011, 8:57 AM

ne, Thank you for the info. We have a lot of behavioral issues at home and she is beginning to show that at school. We do have a great support system in the building which is nice (we don't get nearly as many calls as 6 months ago) - they are learning how to effectively communication with her and deal with those issues. I've very thankful for that. She does have sensory issues - she sleeps against a wall, a body pillow on the other side and 4-5 blankets on top; she is in your space (and face) but don't think about doing that to her - she would explode. Another issue is water - she can't stand the water running in the shower (we have purchased several differet shower heads). Baths aren't appealing either. We are making progress in that area though. SSD (Special School District) just completed the evaluation for an IEP and found NO educational diagnosis for Aspergers. Sighing she sat with a table of peers at lunch

(duh, they have assigned seating), she was on task 83% of the time (she is medicated for ADHD), and her grades are too high (not surprising when we spend 4-5 hours a night on homework). She is also taking Geodone to control the impulsiveness. I let the meeting crying Our school administrators are great - outstanding relationship and communication with them. I have a meeting this morning with the main principal. We are currently waiting for approval for different therapies/counseling to begin. I am coping by reading as much as I can about Asperger's and staying true to my faith and belief that God will see us through! > > > From: Dorris <abcdefinnegan@...>> Subject: ( ) New to all this> > Date: Wednesday, March 9, 2011, 2:08 PM> > > Â > > > > Hi, my name is Dorris. My 13 y/o daughter received a diagnosis of Asperger's in Oct 2010...very late to

receive a diagnosis but it ALL makes sense - looking at things from her childhood. Just completed the IEP evaluation with no education diagnosis of Asperger's because her grades are too good. Any advice on next steps?>