Tuesday, November 27, 2012

Dear $450,000,000 Powerball WINNER!


Written by:  Tammy Wheaton, Guest Blogger

I am writing today with a heavy heart.

Our autism journey has been full of ups and downs. 

Yesterday was a huge disappointment, and I allowed it to get me down, but only for a moment; cause as you autism parents know, you make no progress down in the dumps, you got to get right back on the horse!

Warning: I never post the rough times on social media, so all of my Facebook family and friends only hear about the fun times with Beau with an occasional hint that we might be having a rough time.

Well on this blog I am going to tell the truth....the good, the bad, the ugly....the uncensored version of our lives with Beau.  

So if you only want to know the positive stuff, send me a friend request on Facebook: Tammy Weaver Wheaton....and only read the last three sentences of this blog.

So my first blog finds me on the day after what we will call a "minor setback".

Maybe someday I will blog about how we got to this point, but here is where we are:

Beau is hurting himself. He is non-verbal.

He can't tell me he loves me, what he wants for Christmas, when he has to go to the bathroom, when his tummy hurts......why he beats himself silly in the McDonald's drive through, why he grabs my face when I get him dressed, why he punches his hips and legs until the bruises are the size of grapefruits and I fear the school will think I hurt him, why he punches himself and has to wear a helmet any time there is mention of food, on the bus, in the morning, at school, in the evening, and sometimes during sleep.

The TC has told us they cannot help and to seek alternative treatment options.

The BCBA referred us to Kennedy Krieger Institute in Baltimore, Maryland because there is no way to address the frequency, duration, and severity of what we are dealing with without intensive, inpatient treatment options that Kennedy Krieger can provide.

So it has been months of bruises, and now what seems to be a permanent lump on his head, sending data, videos, enduring hours of meltdowns, attacks, screaming, figuring out how to get him cross country, ordering safety harness, helmet fitting, and oh yes, punching himself to what I fear death only for the insurance company to say it is not an emergency and is therefore...not covered.

I allowed this to defeat me but only for a moment!
Be glad to know and rest assured I am back on the horse, we are appealing the decision as far as we can go, and we have a plan B!

If any of you are wealthy and want to save the life of a child with autism, you know where to find me!

4 comments:

  1. I bought 6 Powerball tickets today and I daydreamed all day what I would do and who I would want to help. Believe me, Beau is already on my list. He would be helped, one way or another. There is something about him that is so sweet and I just want to help him. I know in my heart that you will find the answer one day. I have even wondered if you could get donations if you posted videos of him hitting himself on youtube. There has to be a way, there has to be an answer and I want to know what it is. Thank God you are his Mom, not everyone could hang in there and keep coming back for the next fight. Thank you for sharing your story, now guess who I am???

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  2. Oh Tammy I guess I didn't know how bad it was. I'm so sorry but I'm glad to see you are back on it. I can give you pointers on fighting w/ins co. I have done it an awful lot. You, Beau and Nate are in our prayers. Love you.

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  3. Hi, Tammy--I just found your blog, so if I'm writing something you've already addressed, I apologize. Have you had your son checked for colitis--it's so common in kids with autism and is very painful...often a reason for self-injurious behavior.

    I took my son to KKI, as well when we lived on the East Coast--several different departments. If you're going there for gastro, I would recommend Arthur Krigsman in New York instead. He specializes in treating autistic enterocolitis--although KKI is doing a study in this area now. My neighbor actually takes her son to see him (no small feat since we live in Hawaii!).

    Good luck and I hope you are able to find something to help your son.

    Warm Regards, Janet from www.autisminparadise.com

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