Through a long journey of evaluations and OT, we are zoning in on a PDD-NOS diagnosis (or high functioning autism) for our son (age 7 now). We are looking for resources or other parents who have dealt with the same. He's frustrated easily, doesn't transition well (especially when focused on something), doesn't know when enough is enough. We're working with our school, but would love to compare notes with other parents about how to best address. thanks
My 3 1/2 year old son sounds the same. It is just better tolerated when they are younger. We have been told to expose him to new situations but we always end in a melt down and we have to carry him or put him in a stroller to get him back home. We went to Il Masonic Hospital for a medical evaluation and they said they didn't think he was autistic. I think the label is not what is important it is that they get the help they need to function well in school and other social situations. We haven't had to deal with school yet but are tring to get OT help before he starts.
Julie,
I have been where you are, actually I am still there. My son who will be 8 in October has been tentatively diagnosed with Asperger's. Are you familiar with this? We have been going to doctors since he turned 3. At first they wanted to test him for ADHD, then as he got a little older they tested for autism and PDD-NOS, finally they are thinking Asperger's. Please email me directly as I have a TON of information on all of these diagnoses since I also have a friend who has two children with autism and one with high-functioning asperger's. My son also has trouble transitioning, frustration level is low, as well as many other little issues. You can call if you like. I will be glad to help in any way I can. It's nice to know that you are not alone in what you are going through.
Please contact me. Where do you live? We are in Sandwich and so far the schools have been great!!
Yvonne
[email protected]
815-313-7640
A LITTLE ABOUT ME:
SAHM of three very busy boys 10,7,4.
I know of a teacher whose son was similar to this and they have diagnosed him as normal now. She controlled his with diet. I can give her your email address if you would like more info. (Send me a message at [email protected])
Amanda
HI Julie,
Without trying to sound like a salesperson.... I have a Discovery Toys business and our new focus this Fall is on Autism, we even have a special brochure designated to it. I am just now learning more about Autism myself, but I can see what kind of information I can gather for you, and what kind of products might help.
Carol
(630)980-0280
I know it's not near you, but Easter Seals in Elgin offers a support group for families with children with PDD. Maybe there would be something in your area as well. I know of two families with children with autism, both children are younger than your son, but if you would like me to pass your email along, I would be happy to put you in contact with them. Just email me directly if you would like to do so.
best of luck,
Kristi
[email protected]
Been there, done that, BEFORE most people even knew what High functioning Autism was...=/ My son is 19 and I WISH I had the support and information years ago that is available today. Anyway, if you need someone to bounce things off of please feel free to email me.
Helen
[email protected]
I used to work at Vanderbilt Univeristy, in Nashville, TN and they have an excellent autism research and treatment facility. Wendy Stone is one of the leading experts on autism and is doing amazing things. I suspect if there is a support group or network in the Chicago area she would be able to direct you to it and give you additional information.
Hope that helps,
anna
Julie:
Check out Communication Clubhouse located in Downers Grove. My son currently goes there for services though not diagnosed with anything specific. They offer many programs and classes for kids. My son is in a Social Pragmatics group which does include other kids with autism and other spectrum disorders. There website can give you some other valuable information.
www.communicationclubhouse.com
Good Luck!
Julie,
I know LeMoyne school in Wrigleyville has a program for autism. I also have a friend in Indiana with a 7 yr old son. I pasted her response below, let me know if you'd like ker email address. Good luck!
Unless you have an outstanding school, they simply do not have the resources to provide enough therapy, much less any programs that can be carried over to home. Check insurance benefits for outpatient speech and/or OT because they can help you get started. ABA is a great way to help develop skills like eye contact, listening ears, specific skills. Notre Dame has a training session every January for a few hundred dollars. ROUTINE is key! A timer that shows exactly how much time to do something might help, and a schedule board is useful, too. Your schedule board can be a dry erase board on the fridge if he can read, or photos that stick to a piece of fabric with Velcro. To help him transition, let him cross off the item on the list, or take the picture off the schedule and drop it into a folder. They can be as specific as you want - for instance, to help him learn to go potty I had one for my son in the bathroom that had drawings of pants at the ankles, a garden hose, toilet paper, pants up, a bar of soap, and a towel. Now he gets by with the dry erase board and his morning schedule - wake up, kiss mom, go pee (which implies wash hands), get dressed, eat breakfast, play until 7:10 when we go for the bus. He get a charge out of crossing the "done" things off the list. Finally, join a support group. Meeting other parents will not only provide comfort but valuable insight. Even if you can't make it to a meeting, join some online support groups for parents of autistic kids. Good luck! Let me know if there is anything else I might have a comment on.
Laura
Hey Julie -
I've got an 11 y/o with Asperger's Syndrome and have found some phenomenal resources that have helped our SmallBoy greatly. I would love to chat more with you.
Christina (also working mom of 3 - 17, 15, 11 - in Oak Park
I can't help you with any personal insight, but I can share that the band, Five for Fighting, is generously donating $.49 to AutismSpeaks for each time this video is viewed. Funding goes toward research studies to help find a cure for autism. Follow this link to view the video & pass it along. They're hoping for 10,000 hits; it'd be great to help them surpass that goal. Good luck & may you gain much good help for your son. http://www.whatkindofworlddoyouwant.com/videos/view/id/408214
Request an IEP, and within that plan, request that a sensory diet throughout the day be used. Allowing your child access to "movement" will get his "brain" calmed and focused for the classroom. Contact Alta Regional Center and ask for help, they will pick up where the school leaves off. In our case, that includeds respite and social skills training. Give the school the "top 10 things your student with aspergers wishes you knew" and give it to all members of his IEP team each year. It's hard for these kids and they will need alot of kind and compassionate positive direction.
We struggle daily with our 8 year old who is PDD and has all the hallmark deficits with speech, language, social skills, and sensory intergration. Additionally, he fits all the criteria for ADHD and ODD as well. After 5 years of early intervention he continues to struggle following social norms and complying with authority, it's his "HIS WAY" all the time. Behaviors are "off the chart" at times and leave us struggling to understand the "why" of it all. Usually it's sensory related or his way of making things "right" in his world. These children serve an importatant role in our civilazation and you must protect his from those who fail to understand and tollerate his uniqueness. He will exceed everyones expectations in the end.
A lot of time has passed since I shared my request. Many of you shared your stories and helpful ideas. We found RNBC ( http://www.rnbc.org/default.asp ) where we finally found providers who coordinated across disciplines and could diagnose and advise us on the Autism spectrum. We established an IDP with the school. RNBC even has an educational liason who helped us understand what services we could ask for in the IDP. Fortunately, our son has made great progress and is functioning very well in 3rd grade now. Thank you to all!