Why should you care about Autism?
Well… Apparently Autism is becoming so widespread that it was enough to become the focus of a two-part episode on a recent Extreme Makeover Home Edition. If you watch that show you know what I am talking about.
I watched the show yesterday and felt a host of emotions. I had so much compassion for the family that the show was helping. We have one child with Autism and the thought of having to manage 2 children with and one without seemed so overwhelming to me.
It was refreshing to hear about the Sparrow Club and how they utilize community to not only help someone in need but to teach kids (and the community) more about the challenges faced by the people & families they adopt.
I have to live in this delicate balance (as I am sure Jen does too) where I am all at once striving to fight every single day to help get the support and services my child needs to become what and who he wants to be. I also have to continually brace myself for the acceptance that there is a real potential that Sam will never be able to live alone, that he may never know independence, he may never know what falling in love is like, going on a date, or a first kiss.
When Lindsay McPhail opened her heart on national television and explained that she and her husband just have to let go, and accept that this is what faces them for the rest of their lives it brought tears to my eyes.
I don’t think that she said that because it was tragic, like you might when you’re facing a really awful terminal disease that will likely lead to death, but I felt that she said it because it’s the truth. Her words and tears came from someone who is living with tremendous challenges and whose undying love & commitment to her children and family is tested every single day. It is like going to battle each and every day for the rest of your life.
Everyone has different dreams and aspirations for themselves, and those of us with children have dreams and aspirations for them. When you are confronted with this kind of challenge, it requires you to come up with an ever-changing series of plans for the rest of your life.
Why do I think you should care about Autism? Because not only is it here but it is spreading like wildfire.
As of 2011, Autism affects one in every one hundred and ten children and more specifically, one in every seventy boys.
It is important for folks who know nothing about Autism to learn about it. It is important that these folks have some compassion when a kid is having a meltdown in a grocery store, or a restaurant, or anywhere in public.
Try hard not to look at someone in disgust. Try smiling or looking away. Until you’ve lived in their shoes for a day, lets just say it’s best to leave your judgements aside.
You can find out more about Autism at Autism Speaks.
Onto our world now…
We found out yesterday that the funds are gone in our county’s disability services. This means that the speech therapy (which is NOT covered by the expensive medical insurance that we have been paying out-of-pocket for over the past few years) that we have been trying to get assistance with is going to end for Sam.
Jen has jumped through all kinds of hoops to get the funding and getting the call that it was in vane in the middle of all this hard work is like getting a boot to the gut.
A while ago I reached out to friends with a fundraiser. With the help and amazing generosity of my friends and anonymous folks from all over, we raised almost $2,200 to help us pay for this much needed therapy.
I am trying to come up with a new series of fundraisers in the next month or so because I simply cannot sit by and not help my son get therapy. It seems to me that it is essential that any person who expects to participate in society be able to communicate. Communication is so often taken for granted that it isn’t until folks lose their ability, or have it temporarily interrupted, that they understand how important it is.
Why a health insurance company would not be interested in helping to pay for this kind of critical therapy is beyond me. I guess I shouldn’t be surprised, as I have loathed medical insurance companies for some time now. They have profited from my family, as they have on countless other families. It is our hard earned money that has the corporate executives living so luxuriously as my wife and I join millions of Americans in a fight each month to keep our bills paid.
When we started speech therapy with Sam, he only had the ability to say one or two words.
Now Sam has many words.
The greatest joy came from taking Sam yesterday after a hiatus of several months. The excitement that his speech therapist had for the progress Sam has made was really wonderful to see.
It’s been an emotional time.
Halloween is over. Sam still has anxiety but we’re dealing with that as it comes (because lots of folks want to hang onto their decorated front yards for a while longer).
We’re now onto Thanksgiving and looking forward to having a new experience with some dear friends! The whole family is thrilled to try something new for a change!
I also want to thank my friends on Facebook. It is their kindness and support that helps to lift me out of the pit on many occasions. It’s this amazing awesomeness in each and every one of them that combines with the love in my family and makes me feel rich beyond my wildest dreams.