Monday, March 29, 2010

Our Continued Fight to Help Noah

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I've decided for the first time to publish email correspondence with Early Intervention. I truly want everyone to know what this fight is like. It's not an exaggeration. It's not me be overly sensitive, it's not about complaining or being negative about our circumstances. This is my daily fight. My daily fight to get Noah what he needs, what is owed to him by law. Keep in mind that our current alternative therapy ABM/Feldenkrais method is recognized by Denver Options (Early Intervention Services in Denver, Colorado), however DDRC (Early Intervention Services, in Jefferson County, Colorado), is attempting to tell me they refuse to recognize it as credible, certifiable therapy and refusing to help us financially fund the therapy of our choice. Even more ironic is the fact that DDRC is funding it for another family but refuses to do so for Noah. In addition DDRC states they will not financially assist us - not because we don't financially qualify, but because we aren't currently doing therapy through them. I'm pretty sure their reasoning is against the law, however I suspect they think I'll eventually go away if they can keep pushing me down. The same rules and privileges should apply for everyone. If you are going to recognize ABM/Feldenkrais Method for even one family in the state of Colorado in any Early Intervention Program, regardless of what county you happen to live in, than you'd better do it for all. And just because the State wants to not pay out as many families as possible gives them no right to deny us help with any false excuse they deem appropriate.

Dear Stacy,

I apologize for not responding sooner. DDRC was awaiting direction from the State Early Intervention Office and then our office was closed last Wednesday due to the snow storm, I was out of the office on Thursday, and DDRC is closed on Fridays. I’m back in the office today and wanted to get back to you with information on your request.

Currently, Noah does not have an active Individualized Family Service Plan (IFSP). The IFSP is needed in order to access early intervention (Part C) services. In July 2009, you decided to have Noah receive clinic-based services through Medicaid and declined the IFSP.

At any time, if you are interested in receiving early intervention services in the natural environment again you would need to re-refer Noah to the program. As it has been longer than 6 months, the process for developing a new IFSP includes doing a new multi-disciplinary assessment for Noah to see how he’s doing in all areas of his development and then writing a new IFSP. Part of the multi-disciplinary assessment and IFSP process includes discussing with you and the IFSP Team what services are available through the program and recommendations of which services would best meet Noah’s needs.

In considering your decision, I wanted to make you aware that the State Early Intervention office has reviewed literature regarding the Feldenkrais Method and they feel the literature does not show it to be an evidence-based practice, that it is a method and not a service, that it is direct hands-on therapy and is not routines-based (family directed) and for these reasons is not an allowable service and we will no longer be funding it or have any providers we contract with for it. They also shared with us that Feldenkrais is a method that falls under the realm of physical therapy, in such that a PT could use this method as part of therapy. In this case, PT would be an allowable service, but would need to be recommended by an IFSP discussion.

You may want to call the State Early Intervention office for more details on their position. If so, they can be reached at 303-866-7657. I’m sorry we are not able to offer it at this time. Please let me know if there is anything else I can help you with.

I find this completely unacceptable that the State of Colorado doesn't have the same policy for every single person that is exactly like Noah. The same rules need to apply for everyone. And our family qualifies for money that is due to us - it doesn't matter if I do therapy or not through DDRC, we are still active to receive funding regardless. And I fight and I fight and I fight. But I'm all alone. I'm fighting all by myself each and everyday to get Noah all that I can. Until I take my last breath on this earth I will continue to fight for him. He is so deserving of every opportunity - the very same opportunities other children are afforded. Without this issue become public knowledge through media or otherwise I fear that many children just like Noah will continue to go without benefits that are due to them.

This has nothing to do with not staying positive. I have every right to be mad, to be discouraged, to feel exhausted from fighting the system. I'm advocating in every direction possible for Noah.

Noah had his well-being baby check today with a new doctor. I found a doctor that no longer required me to fill out these stupid developmental questionnaires or picked Noah apart like he was ailing being underweight every time I went in. He now weighs 17lbs 7 ounces and this doctor had zero concerns, and understands that Noah's only challenges are developmental delays. Whether or not it's the perfect doctor match for us, only time will tell.

For those of you just itching to load up my email with criticism over my choices of physicians, parenting, or how you think I'm not going about getting Noah the help he needs, please don't bother. I have so much to focus on that I'm simply getting quite found of the delete button, and I don't mean to sound cold, but I simply don't have the time in my day to respond to negativity. Think what you may. Chris and I are in this one-hundred percent for Noah. That is why we are so very thankful that his caringbridge website allows for the ability to leave such beautiful messages and positive feedback in his guestbook. That is where we look when we need to remember Noah is well loved and that our family is cared for by many. We have to pick and chose our battles, and right now getting Noah all his needs is our only priority. We don't have the time to spend defending ourselves.

Noah's grandma knew Chris and I had been desperate to find a way to puree foods for Noah, as he still isn't ready for the next step in eating yet. I've wanted to give him meats and "real" food for sometime, but have had to rely on baby food products exclusively because I couldn't get the proper consistency from our regular blender and food processor. But Noah's grandma found the perfect gadget for us an emulsifier. It is the most amazing kitchen gadget ever. Yesterday I made pureed top sirloin, pureed chicken breast, and pureed organic pasta and sauce for Noah. It is amazing. It's perfect. I could puree anything in this thing. It's a must have gadget for sensory problem eaters, or for anyone - children or adults included that had the necessity to have their food completely pureed. It was a wonderful gift, and we're so very thankful grandma found the answer to our food dilemma. She never takes Noah off her mind -always thinking of ways to help him.

Although at our wits end, Chris and I continue to battle very hard to find ways to get Noah all that we can. We feel backed against the wall, but we're doing the best we can to come out swinging. I got down on both knees today and just cried - cried to God over and over to help me, help me. I'm truly doing the best I can with this hard road. I love this little human being that he placed in my care more than life itself. I'm fighting to help this precious soul that he gave me. The brain has so much potential to adapt and find new ways. I have to try for Noah. I have to keep hitting my head against these brick walls even though my head is hurt from all the pounding. Giving up is not an option when it comes to Noah. If it were about me I would have given up months ago. Yet I feel like I may never be successful in winning this battle no matter how hard I try to fight. We are like that cliche saying "stuck between a rock and a hard spot."

"One of the most important decisions you’ll ever make is choosing the kind of universe you exist in: is it helpful and supportive or hostile and unsupportive? Your answer to this question will make all the difference in terms of how you live your life and what kind of Divine assistance you attract." Dr. Wayne Dyer

I want to live in a world where it's nothing but helpful and supportive.

Stacy, Chris & Noah