Which Truck Has Autism? You'd Have To Get To Know Them To Find Out
I had so much to say about Autism just last week, but
sometimes I overload on it (watching movies on it, reading a million books on
it, immersing myself in Autism day in and out in every way to better understand
Ben’s world) and then I wake up hoping that Autism is not part of our world any
longer. I want it to be a condition he
has outgrown or disease he has been cured of for life. Sometimes I wake up and have that brief
moment when I forget he has Autism and it feels like a fresh slate. Opportunities abound.
But reality is that Autism is his world. And it’s up to me to fight for him for all
the opportunities he’s entitled too since he can’t at this point. Whether it’s insurance coverage for ABA
therapy (that is, at only 2 hours a week, making a HUGE difference in his
world), the school options he has for pre-school next year and beyond, the education
he’s allowed when he is in school (all the subjects and not just life skills
such as learning to dress himself or take a bath or ride a bus). I will fight and fight and fight all the
obstacles in his way. Wouldn’t any
parent for their child? Doesn’t every
parent believe their child can do anything they want and overcome everything in
their way with the help of others and their family? I do and I sure do hope this is true for all
families/children.
Insurance coverage for the therapies is the biggest obstacle
I face for Ben’s progress right now. The
state of WA provides 7 hours a week for him.
Suggested number of hours is 25+ a week.
Budget cuts mean that that’s all that’s available. And that’s up from 4 in the spring. We are able to get 2 hours a week of ABA
because the therapist is a mental health counselor and it’s being billed as
family therapy. But this is rare and was
a fluke to find it available. Her time
is in high demand and 2 hours is all we could get. Ben is also in a gymnastics class 1 hour a
week that I count towards “socialization”.
That gives us 10 hours a week. 15
hours short of what he’s supposed to be getting in order to make a difference
in his world. 15 hours a week short of
what every child is entitled too in their life.
And we might have a lot more than other kids. And other kids have much more than us. While state laws are passing for insurance to
cover this therapy, self-funded insurance plans are doing everything they can
to deny this benefit for coverage because it “costs too much”. The cost of covering a child into adulthood
with Autism without enough therapy, according to a Harvard study, runs about
3.2 million over their lifetime. That’s
just for the individual with Autism.
There is also research out there that caregivers and parents of special
needs kids have a spike in health care costs due to the 24/7 stress it
induces. They can expect to age 6 years
for every 1 year of care given to a special needs child/adult. They will likely die earlier than they would
have due to the strain on their entire being.
And what will our kids do then if we parents or caregivers are
gone? The health care system is not set
up to take care of these individuals in a way that affords them a decent
quality of life. That worries me all the
time, every night when I can’t sleep and every day when my mind wanders about
Ben’s future. We have GOT to get it
together as a nation. Autism is becoming
an epidemic in the United States. If our
health care systems don’t catch up, we risk enormous consequences for the
future of our community.
A fire is lit within me every day to make the world better
for Ben. To get him everything I can to
help his life turn out differently than it would otherwise. Join me!
Start within your community. Any
special needs parents could always use a home cooked meal, some errands run for
them, someone to watch their child for an hour or so for the parent to take a
break or get some much needed sleep. It’s
impossible to understand unless you are living it, but trust me, these
parents/caregivers need a hand and a break when you have the time. Karma comes around and we all help each other
when we help our community/circle of friends/schools.
(Apologies for the long delay between posts. Ben was having a hard time this week with
what turns out to be severe eczema on his burn areas that kept him waking up
every night with pain and itching and then the autism would keep him up for 2-3
hours in the middle of the night.
Needless to say, I was tired. Melatonin
caught us up last night and I was excited to post again!)
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