My Facebook post from December 26 says simply, "I got what I wanted for Christmas."
I wasn't excited about new perfume or a new waffle-maker. I had just received word that my son's autism coverage had been approved by Tricare for one more year.
It is a $36,000 a year benefit. Which sounds like a lot, I know. You need to know that it pays for the ABA therapy that means the difference between having a child who is headed for a job and his own apartment or having a child who is headed for an adult group home. That benefit for all military families is under siege again this year.
Therapy is a need, not a want.
My 7 (and-a-half, he would ask me to tell you) year-old son Harrison is one of the kids who needs this therapy. He presented with a few challenges at birth, including low muscle tone in his jaw that made it difficult for him to nurse.
As a toddler he was late to sit, late to crawl and late to walk - taking his very first steps at 19.5 months old.
He had no words. He had difficulty remembering which body part to cover if we'd play "Where's your tummy?" or "Where's your head?"
We began a parade of therapies to address these deficits. Speech therapy to improve that still-low muscle tone in his jaw that was preventing him from learning to speak. Occupational therapy to help him learn to walk, navigate stairs, and improve his core strength.
These therapies helped. In Kindergarten, however, the differences between Harrison and his normally-developing peers were too big to ignore.
Other children were able to draw self-portraits. Harrison could only scribble a circle.
Other children participated in circle time. Harrison walked around the edges of the classroom talking to himself.
Many of the other children could already read. Harrison could seldom identify his own name.
One teacher wrote in an evaluation that other kids sometimes struggled to perform the task at hand while Harrison had difficulty understanding that there WAS a task at hand.
He spent the day in the world of his own head, not in the world of the classroom. In January of 2012, Harrison was diagnosed with Pervasive Developmental Delay - Not Otherwise Specified.
ABA Therapy makes a huge difference.
The autism diagnosis has meant we have greater access to a variety of services through TRICARE. Harrison currently participates in 8-10 hours per week of a therapy called Applied Behavioral Analysis, which is one-on-one tutoring to teach him a variety of academic and daily living skills based on data collection and building the skill sets slowly.
ABA breaks down tasks into more manageable segments and gives Harrison an opportunity to practice those skills repeatedly until he can master them. It can take him 100 tries to do what other kids can do after three or four tries.
ABA is both expensive and time-consuming, but Harrison is living proof that it can work.
Recently, we've begun to see success in a lot of areas. He participated in the first grade musical. For the first time ever, I watched him with a group of kids doing what they were doing when they were doing it - not several beats or even minutes later.
Harrison has gone from being a child who didn't meet exiting benchmarks for Kindergarten or first grade to a kid who (the second time through first grade) is reading on grade level and writing almost as well.
He is making friends. His teachers tell me that they ask a question and he will raise his hand and offer an on-topic correct answer - something that frankly not all of his classmates can consistently do!
Yet ABA is not a permanently approved medical benefit.
TRICARE has not yet decided to add ABA to its permanent list of approved medical benefits. Each year these benefits are under review, and each year we parents hold our collective breath and pray that the coverage will continue.
Legislation has been proposed - as it has been for the past several years - to get ABA added as a permanent benefit and expanded as an offering to kids with other developmental delays like Down Syndrome.
This is an evidence based therapy that has made a huge difference to our family and other families like ours. I hate to think of other parents worrying every year whether they will still have access to the therapy that can change the rest of their child's life.
Please help military families like ours.
The ABA coverage he's currently receiving is helping him to reach his potential; I fear where he might end up without it. Only one out of every four verbal autists like Harrison ever live independently. Only one out of five of them are able to hold down a job.
Yes, $36,000 per year for therapy sounds like a lot of money, and it is. But it's cheaper than the alternative: an entire adult life spent on disability in a group home.
Harrison is a funny, quirky kid, quick with a hug and a strong desire to quiz you about the solar system. I wish for an easier journey for him, and that's made possible by knowledge and compassion for the tough road he's on.
Please take a moment and click here to urge Congress to act for Harrison and all the military kids like him. Someday we hope Harrison will be a taxpayer, too. And he will thank you for the opportunities you have given him.
Sara Weinstock is a Mom, a military spouse, a professor and an avid reader. In her spare time, she counts the days until her husband returns home.
