Autism Awareness Month – 2018

Statement to the San Mateo Foster City School Board on 19 April 2018.

Thank you again for making this resolution for Autism Awareness month for 2018.

I would like to take a couple of minutes to share with you what autism is like (at least as one parent).

The cliché is that “every autistic child is different”… it is true and it isn’t.

When people find out our son Geoffrey is autistic, they ask “where he is on the spectrum”… as if it is some sort of speedometer.

Autism is more like a “chemistry spectrum” – with different kids having wildly different mixes of disabilities and strengths.

First of all, I want to say that we’ve had wonderful support from the school district from day one. A great assessment process. Good teachers. Great speech therapy. Good all around.

I know this is not true of everyone.. and it may not always be true in the future, but my wife and I are grateful for it today.

But you are only a part of our world of special needs and autism

My son, Geoffrey is 4 years, 5 months old.

He is a sweet, loving, child who is “clinically adorable” (in more than one clinical report – I’d show you pictures, but we’d be here all night).

When he was 2, he was a perfect second, child. If you are a parent, you’ll understand. He was quiet. He was happy. He entertained himself… it was taking a little while for him to really start talking, however.

At 2 years 6 months (June), at his older sister’s 5 year physical, he still wasn’t talking much.

The pediatrician suggested an assessment for speech therapy.

Many questionnaires followed.

Even a hearing test.

(I had problems, not Geoffrey)

We had an in-person assessment at Kaiser’s San Francisco assessment center.

Thursday, 15 September 2016.

We went in thinking we were going to be “getting some speech therapy”.

We came home 3 hours later with an autism diagnosis and a letter for the school district, state, and others to say our son had autism.

We were stunned.

Quiet, happy, and entertaining himself turned from a blessing to a curse.

We really didn’t do much for a couple of days…

The next Tuesday (just 5 days later) we got a pre-emptive service denial from Kaiser for ABA (ABA is the main therapy for autism).

We hadn’t even gotten his full diagnosis report.

No more time to sit around.

We got into gear.

We contacted the school district, GGRC and got ball rolling. We appealed the denial to Kaiser.

The school district confirmed his diagnosis.

GGRC confirmed his diagnosis.

We’ve been told we have a “gold ticket” – a clear, strong diagnosis that will unlock a full range of services.

Many people don’t.

Geoffrey’s authorized services are almost a full-time job for my 4-year-old – 4 hours a day of Special Day School, with a half hour speech session every week. An hour of speech through Kaiser and 15 hours a week of ABA (finally… another story).

That’s 36 hours a week of services.

Outside of school, we have at least $250 every day in covered services also with a $50 copay every day.

5 days a week.

52 weeks a year (barring vacations and holidays)

The typical cost for a family with an autistic child is $5,000 to $7,000 extra every year.

We’re right there.

During the past year and a half since we got things rolling, we’re on our 4th speech therapist and 3rd ABA provider (hopefully… our last provider notified us they were stopping services at 6:30Pm Friday for the next Monday 7 weeks ago).

Geoffrey was basically non-verbal when he was diagnosed. This is where autism is really strange. He seems to have “typical” or perhaps even above average “receptive communication”…he can understand us just fine… but he’d rather not talk at all and only uses single words to communicate or a small set of “scripts” he has memorized.

He’d rather take your hand a drag you to the refrigerator to get a cookie, if you’d let him.

So, we are reviewing giving him an assistive communication device (actually, you are) – a tablet through which we hope he’ll be able to express himself.

He is recently started exhibiting other “typical” autism behaviors – spinning and running and squealing. And some increased auditory sensitivity that we are watching.

We’ve become concerned with a stall in his progress in all areas, so just this week we requested an ABA assessment from the school district.

If you stop by to visit our family (and you are welcome!), Geoffrey seems like a vibrant little boy who loves running around, reading, and jumping on his trampoline.

When he was 2, you would have considered him pretty typical.

At 3, he would have seemed pretty shy, but… “some kids talk later than others”.

If you see him with other 4 year-olds (or know kids of that age well)… things have gotten different. Though he has made a lot of progress, the gap is widening.

Kids notice.

My 6-year-old daughter had to be taught how to play with her little brother.

Adults will soon.

My wife and I have realized we need to put up signs around our house to remind us to routinely talk to our son.

We have to be reminded because he doesn’t give the verbal feedback or eye contact that we typically expect and usually need to keep communicating.

Yesterday, we had an appointment with a clinical advisor (out of pocket of course – otherwise my wife and I are the “experts” who coordinate all of this stuff). We asked what his path might be…

She said he might not speak until he was 12.

He might not speak ever.

She said we may need to get extra occupational therapy for sensory issues (Not covered of course) because it could be a problem if we don’t get on top of it now.

The future is scary.

On the rare occasions we get past worrying about today.

The average life expectancy of an autistic person is somewhere in their 60s.

There is a high incidence of schizophrenia.

Employment for disabled people in California is only 30 percent. I suspect this under reports people with developmental, emotional, and cognitive disabilities.

50 percent of people shot by police have a disability.

We’re already contemplating guardianship and custodial issues in case something happens to us.

And, since I’ve started becoming active in the special needs community this past Fall, I’ve met kids with more severe autism and other special needs that scare me to even imagine what those children and those parents and those families are going through.

Thank you for listening and thank you for your resolution.

 

Steven B. Davis

19 April 2018

If you are comfortable sharing you special needs story, please share it. It makes a difference and really helps people understand what it means to be a special needs family.

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