Key People, Key Places

[whatamess]

It seems like there are a lot of resources to help children and families in situations like those found on this board. However, I have found a whole lot of disappointment upon actually receiving services. As in, these 'professionals' know very little about the problems they are supposed to be helping solve. I would like to know, on your journey, what individuals (their profession or connection to you) and what agencies or offices were key players in HELPING your child and family. What do you think made those people/agencies different?

For us, I don't think we have had anyone who made us turn a corner for the positive, but those who helped most were-
-an Early Childhood teacher, she looked at all my difficult child's problems as disability based instead of blaming him (or us), I think this is because she had two special needs children of her own
-an Occupational Therapist (OT), she looked out for not only my difficult child's well-being, but the family's-she also had a child with disabilities
-a teacher-looked at difficult child's behaviors as disability based instead of as 'naughty'- I think because this person usually worked with severely cognitively disabled children she approached difficult child with expectations that might have seemed low to some, but were really what he needed.

 

[TeDo]

We had an awesome Occupational Therapist (OT) that really DID know all about Autism Spectrum Disorders (ASD), didn't just claim to. She worked WITH difficult child 1.

That's it. No one else. You're right, it is EVERY sad.

 

[Liahona]

We have an autism specialist that has been seeing difficult child 2 and difficult child 3 for years. She helped difficult child 1 get into the Residential Treatment Center (RTC) that his therapist said was great but almost impossible to get into. She is very positive and does not judge me on the state of my house.

There is also a family facilitator (someone paid by the state to connect families with resources) that has had 10 kids most of them mentally ill that helps me a lot. Just talking to her helps.

Our pediatrician was essential in recognizing that difficult child 2 had autism. He picked it up about 8 months old and spent the next year trying to get us to take difficult child 2 to the autism specialist. He has also ordered tests to make sure we aren't missing anything medical wise that would look like autism.

The autism pre-school that difficult child 2 and difficult child 3 went to has been instrumental in getting difficult child 2 to function on a mild instead of sever level. And they taught us lots about how to deal with autism. It was the one place that we felt completely comfortable. It was o.k. and safe for our kids to be themselves.

difficult child 1's school teacher from the Residential Treatment Center (RTC) helped greatly with it came time to discharge from the Residential Treatment Center (RTC). He talked to the school district about what works with difficult child 1.

And the last one is a bit usual; our lawyer. He has an autistic kid himself and without him x would've destroyed our family life.

 

[DaisyFace]

You mean - aside from this board - right?


The biggest difference-maker (individual) for us was the child-psychologist who actually did the testing for both my kids and wrote recommendations for their 504 and IEP plans.

There have also been many people who have helped in some small way - a teacher who was so great about the IEP, a police officer who took an extra moment, a CPS agent who gave me some inside information - that sort of thing.


Other than that - it has largely been the support of other families and the School of Hard Knocks.

 

[keista]

I've been pondering this all morning, and I can't really think of anyone who REALLY helped.

My advocate helps by being, not by doing. She shows up and the school staff just do what they are supposed to. The reason is because they know if they screw up or around advocate WILL take them to court. And since nothing about son's IEP is really all that exceptional, all I really need is the threat of her.

Son did have a teacher in4th grade who was so enthusiastic to work with him. I thought wow, this will be a good year! NOT She was too enthusiastic. Instead of accommodating HIM, she just took all reasonable accommodations and applied them to EVERY situation to the point where she was really annoying son. LOL

Oh, but we're talking good stuff. Ahhhhhhhhhhhhhhhhmmmmmmmmmmmmmmm OK< well there's the sped teacher in HS who is a pretty good mentor, as well as the computer teacher. They both really "get" son and work with him as much as possible. And I guess the VP should get an honorable mention here making life so easy with that whole science teacher fiasco.

For DD1 there was her counselor in summer camp who happened to be a sped teacher at a different school. (hmmmmmmmmmmm wonder if she had picked up on the Autism Spectrum Disorders (ASD) back then - I was still on anxiety and mood disorder. We had a few "off the record" conversations, but nothing about the cause of her behaviors - just her actual behaviors.) Also this year's and last year's teachers.

Thinking about it, I've gotten more help and support through and from the schools than the community. And my schools are far from perfect, but they are good.