Thursday, January 28, 2010

Elmo Happy

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Noah continues to make great attempts at the grocery cart. He of course is acting very typical of the average child wanting something to hold or play with in the cart that makes noise. He especially enjoys curly ribbon so I'm always trying to pass the gift wrap isles. I've even found myself making the regular $1.49 purchase of his curly ribbon to ensure his continued happiness.

Noah continues to be very attached to anything Elmo, so much so that he's now protesting with small tantrums when I shut the TV off. Which I think is a wonderful display of his ability to think like a typical baby. They almost need to have a subscription for the Elmo Club of the Month where they send you a new DVD. I think Chris and I have completely memorized all the ones that he has. But it helps keep him happy at therapy, organized during meal times so he doesn't get overly excited and more prone to choking, and he even makes great attempts to use his hands to play with toys in his highchair when he's focused on his beloved Elmo DVD's.

It's been a rough week for us routine wise. Noah has changed all his habits once again. I think it's largely due to his teeth finally coming in. He'll have days where he doesn't eat or drink as well, and then the next day he's back to his regular eating and drinking habits, nap time and bed time are no longer an easy falling asleep to the bottle. He doesn't want as many bottles as usual. At first I was worried about that, but really now that he is getting older he probably doesn't necessarily want a bottle every 3 hours like when he was smaller. It was just so much easier when he'd fall asleep to a bottle and then you could put him to bed, and now that he's decided he doesn't want that we're having to learn a whole new way to put him to bed.

I continue to progress in the ABM Therapy DVD's. I still hold true to the belief that this type of therapy has the possibility to make a difference for Noah. There is no therapy that is going to be an overnight fix for Noah, but there is hope that with lots of years of practice that I fully believe Noah will walk in some fashion. Maybe it's not going to be as graceful for him in the beginning, but I hear of children that learn to walk independently at age seven or age nine. Maybe Noah won't crawl like other children but I think we cannot rule out that he might not army crawl or find a way to scoot. I don't think that it's healthy to brand any child regardless of their disability with a "will never do" label. That's not fair to the child, and it isn't fair to the parents. No one really ever knows, but stealing our thunder, our hope, our child's possibilities isn't something that I think families like ours need. We are realistic, we're not ignorant to our children's conditions. We don't live in a fantasy-land where we know that they will be perfect one day. We know the potential outcomes bad and good without someone focusing on the textbook definitions of what the "typical child" with a particular condition is capable of doing. That completely eliminates the human spirit factor, that completely eliminates the devotion of parents, that completely eliminates our child's drive to succeed, most importantly it eliminates God's power over all of our futures. If you simply say well nothing much is expected of him or her, that creates no opportunity for growth in anyone.

Someone told me the reason the medical profession likes to give you the worst case scenario all of the time is so that you'll be pleasantly surprised if the outcome is better than projected. I think that is simply the silliest logic. Pleasantly surprised? Pleasantly surprised is if you find the IRS is refunding you lots of money, not when you realize your child is able to walk. There are no words in the English Dictionary that can even come close to touching that emotion.

Sometimes you simply wish you could have everyone walk on this side of the fence just for one day, to have profound understanding of all of it. People by nature walk in and out of each other's lives everyday for various reasons. But when you have a special needs child many flea like you have the plague. Suddenly you feel as if you and your child's existence make them more uncomfortable than they can possibly handle. Yet, even though there are many that abandoned us when we needed the most support, God sent in a whole new troop of amazing blessings from all around the world to help encourage us, lift our spirits and demonstrate love without boundaries for a little boy named Noah. That is what we draw from when our hearts are heavy and we need gentle encouragement to fight for another better tomorrow.

I received today a very typical reponse from Early Intervention in regards to a request to help us financially with things needed for Noah. It was cold and insensitive. We had applied for financial help for out of pocket costs for things we've spent to try to meet all of Noah's needs. They basicially said they're sorry if Medicaid doesn't pick up the tab, or if we can't find assistance through other programs, but that they simply feel that Noah's therapy equipment, because he's an infant, can be met by quote "simulated using another item such as a hammock or a sheet." It is the most ignorant email I think I've received in quite a long time. I'm surprised they didn't recommend I make thumb splints out of duct tape. They truly have no idea about any of this, they aren't living it, and to suggest that I simply try to make some home made therapy gadget out of a sheet? Seriously? But having doors slammed in our face isn't new to us, as many of you know that have been so diligent in caring and reading Noah's story. But there isn't anything we can do. And the sad realiziation is we're not the only family that this is happening to. There are thousands of us needing help. And there is no help for us. They tell you there is. You leave the hospital with all these cute pamphlets with instructions: "Should your baby live, feel free to contact these people for services." What services? It looks good on paper, but the help isn't there. We are on our own.

I've attached a picture of Noah celebrating the fact that I turned on his Elmo DVD. Elmo brings him so much joy.

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability."

-Lori Borgman

Stacy, Chris & Noah