New and need help

[Momtocat]

HI. I am mom to five year old boy that may be aspergers with add and odd. I have a meeting at school this week to try to get school to do evaluations. Anyone have anything helpful? I have been trying to get official diagnosis for three years. I'm frustrated, crying and losing it. I know they will deny due to his academics being OK, but I need help to learn how to deal.

 

[Meg12]

HI. I am mom to five year old boy that may be aspergers with add and odd. I have a meeting at school this week to try to get school to do evaluations. Anyone have anything helpful? I have been trying to get official diagnosis for three years. I'm frustrated, crying and losing it. I know they will deny due to his academics being OK, but I need help to learn how to deal.

Hi Momtocat,
This varies (depending on the school district) but your best bet is getting a referral from your child's pediatrician to get tested and / or a diagnosis. Then the school will make accommodations and prepare an IEP based on the diagnosis. Again, depending on the school district, the procedure will vary slightly. The school may also do an evaluation but depending on where you live, they may not want to take another child on their caseload. If you get the evaluation outside of school, they will be legally obligated to make accommodations for your child. Hope this helps & good luck. You know your child..... don't give up!

 

[Southern Discomfort]

Usually people will mistake different ways of thinking by people with Asperger's as being oppositional when in fact they the person just isn't being clear on what they want. In most cases it isn't about behaviour problems.

 

[Warmheart]

I second going through your primary care doctor. Request that he or she refer you to a *pediatric neuropsychologist* (note the "Neuro" part of this... a psychologist won't be able to do the neuropsych testing required for diagnosis.)

It may take 3 months to get the initial appointment with the neuropsych.
It likely will take one more month for the testing appointment.
The results are tallied, and in about a week or two, your appointment providing diagnosis will happen.

Upon diagnosis, you now have a documented way to require that the school provide appropriate supports and accommodations.
Yay!

Please, this last step is extra important:
You need to find a parent support group so that you can regularly get the encouragement, support, humor, and solutions to feel good about your son's present and future. Parent groups network and brainstorm ideas and share resources such as the best OT in the area, cheapest noise-cancelling headphones, and how to get an advocate to help with your son's IEP or 504 Plan at school.

I hope I've helped in some way. Best of luck!

 

[WittyAspie]

There is a general misunderstanding of high functioning autism. I had a pediatrician waste my time one day trying to convince me that my son did not have autism even though he already had a diagnosis. She was completely ignorant that not all autism is the same and wasn't willing to listen. If that happens to you, switch pediatricians. It may help to use the term Asperger's Syndrome even though that term is technically outdated in the US.

 

[Allicat]

Hi momcat. Mom of a kid on the spectrum as well as an occupational therapist who spent 25 years in the school districts (so I've sat on both sides of the table!) here.

I've had similar issues with my guy. In regards to academics (I'm assuming you're in the states), having a child who scores well academically makes it tough for many schools to recommend support, as technically they are required to provide an "appropriate and free education" and on paper the child is learning at a level commensurate with their peers.

With that being said, we all know there is more to school than reading, writing and 'rithmatic! And that is the piece you should emphasize at your meeting. Participation, social interaction, ability to produce work, using the skills being taught, etc. Has his teacher shared any concerns about any of these areas with you? Be sure to bring them up at the meeting. Let the CSE know you understand that he while he currently tests well academically, deficits in these areas will impact his ability to continue to do that and that is unacceptable. While you cannot ask the district to do a specific test (the district gets to pick the tests they administer), you can ask them to screen him for behavioral and emotional function in school (for example, the BASC is used for that purpose in many schools, but there are others).

And to clarify some things, the school does not have to test a child if a doctor recommends it, as they are not a medical facility. Their charge is to the educational environment and that's where your concerns need to be targeted. If testing indicates support is needed, they are then obligated to provide that support, whether or not their caseloads are full.

Lastly, yes. Getting the right diagnosis can be horribly frustrating (I have been there!). I knew he was on the spectrum from early on, but he didn't get any diagnosis until he was 5, and that was ADHD (the neuro at the time said he didn't quite make the spectrum diagnosis and that he was "quirky". Not helpful). He wasn't confirmed as on the spectrum to me until this week (although apparently his previous neuro DID give him the diagnosis 2 years ago; just never passed that info on to me).

But don't let that stop you! You don't need a diagnosis to give your kid the tools he/she needs to help them. For example, I've always used "countdowns" to give my kid an opportunity to transition (he does NOT handle change well LOL). So when he was young, if we needed to go do something, I'd let him know "We need to do X in 5 minutes", then remind him on 4 minutes, etc. He's older now, so I don't need to count down each minute, but I still point out the clock and remind him in X minutes we will need to do X (although usually I will have to point out time is up). When you have a free moment or 2, do some research, and definitely ask here, on what tools you can use to help your kid.

HTH!
Alli