Friday, September 26, 2008

An Unlikely Hero

As most of you know, the Autism/Vaccinations fight is one that is near and dear to my heart. For the sake of keeping this blog as upbeat as I can, and so as not to seem melodramatic, I tend not to blog about the unfortunately frequent battles that I/we fight with Autism, treatment, insurance, preschool problems, relapses, etc. Frankly, pity makes me uncomfortable, and it's not what I am after. So I waffle about how much to tell. I don't want to worry grandparents, friends, and family, but I don't want to lie by omission either.

I want to be clear that Kynsie and Kyan have made dramatic even miraculous steps in the right direction. We are still very much on the road to recovery, but we are not fully there yet. Kyan has stalled out with speech and struggled significantly with his transition to preschool. Kynsie's speech is progressing, but she is still behind. She also struggled some with transitioning to preschool.

The directors wanted to put Kynsie and Kyan in a younger class to be around kids who were developmentally more in line with them. This meant separating them from Braylen. This separation may not seem like a big deal, but it really was a HUGE deal. Kynsie and Kyan find comfort in having Braylen around. They all need each other greatly. The bond between the 3 of them is one that cannot be described. You just have to see it for yourself and experience it. In short, they are very off balance when one is missing. So, putting K & K in a class separate from B would cause intense anxiety for all 3. In addition, K & K need to be around kids who are doing age-appropriate activities. They need to be surrounded by kids who are ahead of them so that they can have peer models other than Braylen. The day will come when separation will be good for them, and necessary for them to exert their own independence. That time is NOT now. So I went toe-to-toe with the directors on this one. It wasn't pretty... I'll let you guess who won that battle. :) Unfortunately, that is just a day in the life. I feel like we just get one hurdle cleared and then a new one pops up.

We were informed last week that our therapy center (where all 3 take speech and K & K get occupational therapy each week) will no longer be accepting state funding effective 10/10/08. What that means is that we are responsible for the kid's therapy as of 10/10/08. The news got even worse. Our therapy center does not accept our insurance. The hourly rate is $110. We have 5 hours of therapy per week. So, yes that is a grand total of $550 per week. My insurance will pay out of network for the occupational therapy only. They do not cover speech at all for children who have speech delays as a result of developmental delay, rather than physical defect. So--that makes the adjusted grand total per week $430. Or $1720 per month just for therapy. Needless to say, that is not a feasible option for us.

So, we are going to have a 1 month therapy gap until the kids hit age 3. At that time we *hope* at least K & K will be picked up by the state for speech therapy through the school system. Braylen needs more speech, but may not qualify. For OT, we will go to an in-network facility where our insurance will pay a grand total of $1,000 per child, per year for OT. So, basically after 2 months of therapy, we are on our own. Now, I have letters to write and people to cuss...j/k on that part. But seriously, I have to write letters to senators, congressmen, politicians, Blue Cross/Blue Shield, and State Farm to let them know that not accepting Autism Spectrum Disorder as a medical/health issue AND refusing to pay for treatments is shameful, criminal, and probably many other adjectives that I will come up with as I write.

I tell you all of this to say that there is always a fight to be fought, and I confess that some days it is just so draining. But what is the alternative? Laying down to die simply isn't an option.

So in walks the new hero. I will admit that she is a dark horse at best. On her worst day, she is a crass chick with questionable morals. Nevertheless, Jenny McCarthy is my new hero. As most people breathing in America now know, her son Evan has autism. Jenny McCarthy has finally succeeded in getting national media attention-namely Oprah Show appearances twice- for the Autism/vaccine connection AND DAN! doctors, the use of supplements and dietary restrictions as treatments in addition to traditional therapies. Jenny's first book about this Autism journey, Louder than Words was the initial cry that broke the silence and forced the American Media to sit up and pay attention to this crisis. Jenny McCarthy has used her celebrity status to shout from the rooftops what so many of us moms have been screaming for years. The difference is, when Jenny talks, people listen. In addition, Jim Carey has joined the fight and again added the weight of his celebrity status to the mix.

But what makes her my hero? Jenny has just released a new book called Mother Warriors . Click the link and you can read the first chapter. It is brief and well-written. In Mother Warriors, Jenny talks about her fight to heal her son, and she shares the stories of other moms from across the country as they continue to fight to heal their children from Autism. As I began reading this book last night, I felt....validated. I kept saying out loud "YES. That's it. That's how I feel." She gives a great analogy of a child with a scraped knee...I wont ruin it by telling you, because I hope you will buy the book or at least read it in the book store. Anyway--the analogy she uses about the scraped knee is dead on. I have personally been treated that way, and so many other moms across this country get this treatment from 'professionals' and 'experts', namely mainstream doctors, every day.

Another thing that Jenny says in her book that really resonated with me is this: "I always wanted to at least appear that I had all my shit together, that I was a strong woman who could handle anything that came my way, including autism."

I completely identify with that. I need to believe and have other people believe that I am strong enough to hold the pieces together. A piece of that is my pride. But mostly I fear that if I show others or even see for myself that the cracks are there, then suddenly with that knowledge in place, it will all fall down around me. On some level that might be good, therapeutic even....but if that happens, if I come apart at the seams, then who will fight for my kids?

So, we must keep fighting, and to a good end. But there is a price-financial, emotional, physical, mental-for this fight. Jenny's book gives people on the outside a good honest look into our world, and yet doesn't make 'us' look or feel like victims. Instead, we are conquerors on good days, and still warriors even on the bad ones. I highly recommend that you buy Mother Warriors.

I suppose my reasons are selfish. I am a believer that education is the path to change. I believe that the more people who 'see' that what I describe and discuss is real and the more people who accept our life experiences as truth, the better chance we have of breaking this ugly cycle. I also know that the squeaky wheel gets the grease. So this is me squeaking!

Now, the point of this long post is to say 2 things:
1. Buy the book

2. If the cracks are showing, please be kind enough not to tell me. Just pray for me that the glue holds for another day.

To see a few more things that Jenny McCarthy is involved in, check out this link. Again, she is definitely an unlikely hero, but she is nevertheless a great one in the fight against Autism.


gwendysue said...

Sunny- I am fired up after reading what you wrote. 1. I can't believe that a preschool recommended that Kynsie and Kyan be put back. Doesn't that defeat the purpose of preschool? I have never heard of such a thing. The whole point of preschool is to meet the student on his or her level and work with them to achieve age level development... right? That's ridiculous! 2. I feel so bad not only for you, but that your kids are being put first by the medical system. It's like they don't even care what their needs are. How frustrating!! I am going to start praying for you guys about this. I know you have a huge amount of stress and you've earned every right to vent. Hang in there... you get Mom of the year in my book.

Tothblog said...

You are holding it together better than anyone I know.

Hilary said...

Being a twin, I understand the special bond between multiples. Even as a teen/young adult being separated had it's difficulties. I can't say I understand everything you are going through, but I will be praying for some resolutions to these roadblocks in your kids therapy.