Getting Started with Special Needs – Fighting Complacency – Part 1

I give us a “B” – maybe a “B+”

(See Fighting Complacency – Part 2)

We’re just short of 5 months since my son was diagnosed with Autism… and things are looking “good”:

  • He has been in special ed through our local school district since just before Christmas.

We started the public school process just a couple of weeks after the diagnosis. Ideally, I should have got going immediately. But, we kept on top of things after that and had our IEP (individual education plan) meeting in early December 2016. Services were offered immediately, but they suggested we give them a week to get the class ready, so he started the first Monday after the IEP**. 1 week, then off for Christmas break (3 weeks). Things seem good on the school front.

** For those of you without experience with special education in the US public school system, the formal tool used to manage a child’s progress is an Individual Education Plan (IEP). This documents the annual goals (broken into quarterly targets) to address your child’s special education needs over and above their general education objectives.

  • We started speech therapy.

We waited a bit on this until we got through all of the evaluation process for school and state benefits (which ended in early December). There is speech therapy at school, but this is the speech therapy authorized by our health insurance.

Speech therapy has not been 100 percent of what I’d like. This may be on me.

I started out basically “sitting back” and letting the therapist do her thing. Very passive on my part. Kind of an “let’s see” attitude. And, like a typical slug-like parent, was on my DAMN SMARTPHONE.

I suck sometimes.

I was not super happy, but I was also kind of letting things fail.

I had a good talk with our Speech Therapist from Kaiser who helped with my son’s initial autism evaluation… and changed my attitude towards speech therapy and the therapist.

I brought a notebook.

Occasionally, I even take notes.

Mostly, I watch closely to learn what she’s doing with my son. I add comments and clarifications if things are getting off track (for example, we don’t watch Sesame Street at home, so some of the books she was using were unclear to my son because he wasn’t familiar with Big Bird, Cookie Monster and such). I try to see what I can take home.

After all, I win on hours of interaction with my son (barring the DAMN SMART PHONE, of course).

Still not overwhelmed.

But, I have no idea how to evaluate a speech therapist, her methodology, or if I can effectively find a meaningfully better alternative (that is covered under my insurance)!

The speech therapy process for school and health insurance is very different in terms of goals and such (the evaluation criteria for success is as much about us keeping up with the service as any performance criteria – I understand this, but it is limiting).

  • Got through the State evaluation process

This is going slower than I’d like, however, we aren’t expecting too much from the state as in California, once your child turns 3, most of the services come through the school district.

Except…

I’m hoping that we can get the state to pay for Hanen training* for my wife and myself. I’ve heard that it is available from other parents.

We’ll see if there are other services that are useful for us.

We are still awaiting our social worker and getting on with things (next deadline, next week).

*Hanen is a speech therapy training program for parents of autistic children. I’ll discuss it more later, but I strongly recommend you look into it.

  • (Finally) Got Applied Behavior Therapy (ABA) process rolling

This is an artifact of our health insurance coming through the US Federal Government. Basically, until January 2017, ABA coverage for autistic kids was not required to be covered…so pretty much all federal health insurance plans didn’t.

(Fun fact, US law “trumps” state law for federal workers, so health insurance, employment, and other rules are based on the federal rules, not state ones. this sometimes works in your favor, and sometimes not… for us, so far, not so good.)

(Fun fact 2, ABA is one of the most successful therapy approaches for kid’s with autism, so, basically until 2017, policy for the autistic children of US Federal workers was…. “you’re on your own”.)

(Fun fact 3, ABA is amazingly time intensive – up to 20 hours per week. It is likely going to drive our insurance co-pay costs for the year.

Imagine your specialist appointment co-pay under your current insurance provider…

now multiply that by 5 appointments per week and 50 weeks per year.

Total ABA co-pays for the year = Your co-pay x 5 x 50…. and don’t forget weekly speech therapy appointments, other therapies and all of your regular health insurance needs.

)

So, we got things rolling in January and I’m “pinging” the provider this week.

Unlike the school and state, there don’t seem to be any regulatory or legal requirements that compel responsiveness, so things may bog down.

Time to be an extra squeaky wheel (without being annoying).

  • Got smarter on being an effective parent of an autistic child

… OK, somewhat smarter.

This parenting thing is a bit tricky at the best of times.

At least for me, dealing with bureaucracy is pretty easy. I’ve worked in large organizations for decades. I know how to “feed the system” and, if necessary fight it.

Kids, I’ve had only 5 and a half years of experience (starting with my daughter) and only knew I had an autistic child in September (when he was almost 3).

Not a lot of data.

Not a lot of time.

Not a lot of experience.

… and they sure don’t come with a manual.

Good or bad, there are a lot of books about autism. I have 12 sitting right next to me right now.

I’ve read one completely.

And, I’ve watched a video version of another.

>>> WOO HOO, AWESOME DAD !!!! <<<<<

?????

(Also, a lot of stuff on the Internet, talked to doctors, therapists, etc.)

My strong sense is that the real key to getting the best outcome for your child (autistic or not) is on you as the parents.

… and that this is not rocket science.

… but there is science to it.

What is tantalizing is that there are children that lose their autism diagnosis.

How do we get there (or as close to there as possible)?

I feel we are doing all the “basic bits” right:

  • We’ve gotten all of the services in place (or are working them).
  • We’re doing “Autism Parenting 101” pretty well.

But I don’t want “typical” results for my son.

I want to kick autism in the *ss.

Isn’t that what you’d want?

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