This year we celebrated Thanksgiving with my husbands family at my in-laws house. All of his family for the most part have been incredibly kind and accommodating to my kids special needs.
We arrived with our truckload of toys, games, iPads, food, snacks, changes of clothes, and ear muffs for our couple of hour visit. We look like we are unpacking a clown care with all of the "stuff" needed by my kids. Having all of the "stuff" makes our success ratio much higher, even if they don't use any of it, I like to have familiar things available to them when anxiety or sensory overload kicks in.
The food, company, love and laughter were wonderful. Besides my son pooping in the corner of the spare bedroom, the day was a total success. Autism likes to do that to me, make sure that I have episodes of embarrassment, humility, or mortification just to keep me grounded and in my place, making sure I don't get too cocky. Autism tries to keep me down to earth, the bastard.
What I totally loved about this holiday was that the 4 of us arrived together and left together. We always bring 2 cars places just in case autism decides it is going to bitch slap us around. Didn't happen this time. For the first time in a long time all of us got to participate in all of the festivities of the holiday. That is what I am thankful for.
Sunday, November 30, 2014
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.