Roller Coaster Ride

I just contacted a woman last night who lives in this area who recently had her son diagnosed with autism. She sent me an email through the local support group to hopefully be able to help us get started on the process. I let her know that we were currently on the waiting list to see an occupational therapist.

Well...

Apparently it could take many months before we even get an appointment because the occupational therapist through this particular department is on maternity leave. She told us that in either case, we'd be better off going through private channels in this rather than the public one anyway. In the public system we could be on waiting lists for a long time and it could literally be months or even years before we get a diagnosis. Since she's high functioning she'll always be pushed to the bottom of the list to make room for the low functioning kids.

So she gave me a list of names... doctors and other professionals... to contact. She helped us formulate a game plan. It's going to cost us money doing it this way, but we could very well have a diagnosis within the next few months, rather than possible years doing it this way. It also gives us more control of the situation... rather than letting the system have control.

She also let me know they're starting a playgroup for autistic kids in this area, and invited me to come to the support group every month (which is hosted by a local psychologist at his office). And she let me know about the workshops they have at the local RSL every three months to teach people more about autism and how to cope with having an autistic child.

Apparently this area has the highest incidence of autism than in any other part of the country and yet has the least amount of resources, so their organization is working to change that. We're also lucky, I learned, to have one of the leading experts in Autism living locally (she hosts the workshops)... she's had over 30 years of experience working with autistic kids. So I can see a lot of changes happening over the next few years... and I really want to get involved somehow. Not sure how yet... maybe I can help with organizing the playgroup or something.

We talked a lot about what I can expect throughout the process of getting a diagnosis and she encouraged me to meet with the vice principle of the school we're enrolling her in next year. When I told her the school we picked for the gremlin, she said that it is the best equipped school in the area to handle special needs kids (other than the special school for special needs kids), so we chose well. She said the vice principle is very understanding and helpful and will work with us to choose the best teacher and staff members to work with her... and we could have it all set up before she even starts school in January.

I have to say I felt apprehensive about calling her... I felt like I'd end up feeling more overwhelmed than I already did, but talking to her helped a lot. I feel better knowing more about the process and having a plan of action in place.