In November I attended the 5th Autism Speaks Town
Hall Meeting on Adult Housing. I was
excited to go and left there feeling anxious, apprehensive, scared, and
determined to help solve this tsunami that is about to hit communities all over
the country if action isn’t taken soon or more like IMMEDIATELY.
Panelist Fran Solmor made the most personal
and powerful statement to me because she actually a parent of a child and adult
child with autism.
"I am here tonight because like all
of you who are parents, I go to bed every night worrying about where our
daughter will live when we are no longer around. My greatest concern is
this: will Sarah have a home and a community to live in? Right now, the
answer is that there are very few options. Our job is to fix that
problem."
I want to fix the problem too, but don't have the slightest clue as to where to begin, and what struck me at this event, was that none of the panelists had a viable plan or solution, and frankly that hurt my stomach, and made me cry. It feels like diagnosis day all over again, Good Luck, see you in a year and they send you on your way.
Since my
kids with autism, are still relatively young – 6 and 8 this month, housing was
not on the forefront of my mind. I’ve
still been trying to maneuver my way through the IEP process and Regional
Center labyrinth. So I was frankly
caught completely off guard when at this presentation most of the participants
were saying there is a lack of housing.
No, not a lack of housing, there is basically for lack of a better word –
NOTHING that will be there for my kids if action – serious action isn’t taken
now. That action needs to be taken
legislatively, through the faith based communities, and the private sector as
well trying to solve this problem. While
there was Senator Correa speaking at the event, I was left completely deflated
with his lack of solution, and no words of HOW to make it HAPPEN. And when I say IT I mean, actually housing
come to fruition for the tidal wave of children reaching adulthood with autism
that is coming to our state.
One action
item that came out of the meeting was the December 7th Walk Now of
Autism Speaks event at Anaheim Stadium, where Autism Votes will have petitions
to sign to start the legislative process going.
There will be at least 5000 people that can sign these petitions and
help move the process and get this in front of the legislature who HOPEFULLY
will have our kids interests at heart.
I never
thought I would say there was anything scarier in my life than my kids being
diagnosed with autism, because there is not a “manual” on how to treat autism,
so you basically follow “advice” and fly with whatever treatments, therapies,
and medical interventions work for your kids. However, this new knowledge of
how severely impacted our kids will be if all of us as an autism community don’t
ban together and make a difference here, that is the scariest thing ever. I have not slept a good night since, because
I feel like I have to make a difference, and I can’t stop the worry of “What
will happen to my kids, when I’m no longer here?” So the only thing I can do to help stop that
worry is take action. I can not trust
that our dysfunctional frozen government is going to be able to deal with this. I can’t put my kids will being completely in
that basket that I frankly don’t trust.
I have always thought I would be there to take care of my kids, because they NEED me, and one of my kids is so severely impacted by autism, I have just cluelessly thought - "I can never die" - joking but not really joking. And now I feel that thought is going to haunt me.
As a
mommy, I have to now add to my already overwhelming plate of AUTISM to make a
solution. I don’t think the government
will ever do anything to care for these kids adequately, so as a community we
have to come together and think, plan and do something to make a community for
our children and help avoid the tsunami of adults that are about to hit the
system.
I am open and looking for any ideas anyone has here.
Rebecca
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