What We Need is Autism Action. Not Just Awareness

April 4, 2013

166929_2820867599248_1185681700_3212500_1481830144_nI have been struggling to put something up for a while but with Autism Awareness month, it is almost mandatory.  As I waited for the juices to get flowing, I was hit with a post from a Facebook friend of mine.  She is the sister of one of ZAKSMOM’s dearest friends and has three children on the spectrum.

I like having her as my “FB Buddy”.  She is someone that, although we have never met, I feel a connection to and not just because our children share an affliction.  It is strange but I like it and that is enough for me.

So when she posted this letter and I decided to share because as someone put it to me recently, “enough with awareness.  Time for ACTION!”  Well, her letter needs awareness so that we all get off our asses and get some action!  Here is the letter:

April 2, 2013

Dear Governor Le Page,

My name is xxx. My husband and I live in xxx with our three children, all of whom are diagnosed with Autism Spectrum Disorder. 

Yesterday, on April Fool’s Day, or the first day of Autism Awareness Moth, I was notified that our youngest (and most affected by autism) son’s in-home support hours will be cut by 13 hours per week. Was it an April Fool’s prank, or possibly a present for Autism Awareness Month? No, this was not a joke or a present. It is because of budget cuts.

Our youngest child was diagnosed with autism around his first birthday. He was progressing well with therapies, and then regressed after his third birthday. That is when he gradually lost his speech, and to this day cannot talk. He does not respond to his name, he escapes the house, we have to lock him in his room at night for his own safety, he thinks it’s hilarious to try to do dangerous things (climb on high surfaces, open the oven when it’s on, touch a hot pan, hit windows with heavy objects, go into water – any body of water), he plays in the toilet bowl, dumps out everyone’s belongings, rips up pages of books, has difficulty sitting still to eat a meal or complete a simple task, is not completely toilet trained, will wander away, puts non-food items in his mouth, can only play independently for about 5 minutes, and has tantrums and meltdowns because he cannot tell you what he is thinking and feeling. All of the words are stuck in his head, and he cannot tell us. 

Our youngest is a full-time job. It takes one adult being on duty just to support him.

What I want to share with you, really, is how far he has come, and what he is capable of when he has support. He can use his iPad communication program to tell us some of his wants. With support, he can wash his body and hair, brush his teeth, and use the toilet. He can sit nicely at the table, not throw food, try everything on his plate, and tell you when he is finished. He can play appropriately with toys, do arts and crafts when he has support. He does not bite, scratch, pinch, pull hair (for the most part) like he used to when he’s angry. He is learning how to shop in a store, to stay close to mom or dad (getting too big for the cart), how to pay the cashier & say thank- you, because he has support. He is learning how to write his name and how to count. 

He can go out with us as a family and we can do something together – because a support person is helping him to be a part of the family. Without a support person, one parent must support Luke and the other parent is in charge of the other two (autistic, but higher functioning) kids. An outing without support is rarely successful.

Without regular daily support for L, our family stops functioning at even a shadow of what might be normal. Without regular daily support, L will need more care in the long run. Early intervention is what kids with autism need. Reducing L’s in-home support hours will mean he needs more care in the long run. 

L is our son, and he belongs in our home with us. Having regular support for him will mean that it will be possible for him to remain in our home. The support staff teach and support L in his daily living skills that will keep our son with us. Eventually, as he gets older and has acquired more skills, he will not need the level of support he has now. (We know this for a fact because we see the growing independence and improvement in our older son, because of the excellent in-home support he receives)

We plan to appeal the cut in L’s hours. I urge you to re-think the cuts to the state budget that impact the most vulnerable in Maine. In the meantime, we invite you to visit our home for Sunday dinner, when we don’t have support so that you can experience what it’s like first-hand.




Now, no joke, she got the news on April Fools Day and yes, it is the beginning of Autism Awareness Month.  I do not know what to say except for “thanks for kicking her while she is down”.  I can tell from my experience that therapy and services for our kids works.  ZAK has come miles and miles from where he started and it is all because of the support, therapies and services we receive.  We have been blessed to not have any concerns with support or a cut in services.   There were some tenuous times but we always fought to find a way.  However, some do not have that luxury.  Cutbacks and whatnot are expected in our economy but be careful what kicking the can down the road can cause.  This is an epidemic and it needs, not just for Natasha’s child(ren), but for all autistic children that will one day be older and in need of continued lifetime support.  We need to find the action to get not only her family but every family that needs it, the support ensure each and every child is prepared for adulthood.

1 in 50 children are now affected.  And like a lot of folks, I am tired of all the rhetoric about the causes.  Yes, we need to discover what is stealing our children but right now, we need to help the 1 in 50 already diagnosed.  They need it.  Natasha and her family needs it.  Just last night, I sat on a panel of parents who have children with autism and guess what?  Each and every one of them need help.  Anything from financial to education to a break just to go to the store.

So the time is now for action!  Yes, please, don’t stop spreading awareness but also spread it to the right people.  Get on the phones and send letters.  Get your community to support all the one’s in need.  We need ACTION.   If not today, sadly we will be dealing with much bigger problems tomorrow.


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