Even if Nicky is the best computer whiz on the planet if he can't ask for directions, say hello to people, listen to what they say to him or understand danger he won't be able to live independently. This is now my biggest goal now, not how well he does in the Open Court Program. Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life.
If I understood this 7 years ago I would have put my focus on finding ways to extend his school day with the support of a therapist where he could work on play and homework EVERYDAY. I would look to find programs in my community where he would be supported by a team and even though there was turn over it wouldn't be all at once, so there would always be the consistency of the place and some of the people - he would never drop to zero. Then, I would then have worked to find a person who could be with us every weekend – a therapist who could take Nicky everywhere with out without me and my daughter; to the park to play with kids, to the roller rink to skate, to the zoo, all the things that all families do – while teaching every moment. This would have made more time for me and my daughter and it would have been a consistent plan I could rely on. Then I would had added all other therapies and programs that were available to me. All the time knowing that the constants would be school and my weekend support.
I know that despite the best intentions of many, few will be able to deliver consistently on all counts as needed. If you are getting 80% consistently you are doing good and stay there. I have found that with all of it’s problems – if you can get a good team – the support from your local school will be the most consistent program we can get during school age years. So focus on getting a great school program. This is where it can really pay to build relationships with your home school and find out exactly what your child needs and ask the school for it. That will mean getting outside opinions of what your child needs, get reports, get recommendations, hire experts, and be sure to understand "best practices in autism". This is not the time to be afraid of asking for what you need and going all the way to due process if necessary. I have yet to see a parent go through the due process with a plan that was legitimate and supported by experts not get most if not all of what they needed that the school district has the ability to provide. But I have seen families be denied because they did not prepare and fight the battle. So, this is the battle that can pay off for you and your entire family.
Notes to myself and others...
- Review programs often to see if they are really moving our kids toward independence
- Consistency cannot replace quality. However consistency is critical for a successful outcome. I have learned that the best quality if not delivered consistently will not get the best result.
- When ever possible get outside evaluations that can be given to schools and service providers just in case there is a disagreement about diagnosis or needed services. Check with your local hospitals, clinics or physicians to find out who can do the evaluations.
- Get evaluations from people who have expertise working with children with autism and
routinely do the type of evaluation you need.
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