Thursday, February 27, 2014

Celebrating Koala

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After many months of anticipation, a cancelled appointment due to weather conditions and a rescheduled appointment, Noah finally had his independent wheelchair evaluation the first week in February.  I admit I had butterflies in the pit of my stomach for the early morning hours.  This journey often feels like it's always an uphill battle no matter what aspect you are facing.  And in many respects I often feel like I am always waiting for the other shoe to drop.  Another hurdle, another roadblock, a challenge I have to find a way to overcome. 

I guarded my feelings, hoping for the best but quite honestly expecting the worst.  And I don't mean that to sound pessimistic.  We've been through so much as a family and continue to face tremendous challenges when it comes to helping Noah, that you try to protect yourself from the utter disappointment that sends you spiraling into a ball of heaping tears when no one wants to help your child or believe in all things possible.

In a lot of ways I think we've been really unlucky with some people that have come our way - and part of it is a learning experience and getting your footing with the system, with the people within that system, and finding a team of people who have an interest in your child's success and life - just beyond a paycheck.  

When we arrived, I was so relieved to see Noah's speech therapist, who out of the kindness of her heart attended the appointment with us to offer great feedback and suggestions on Noah's needs and to explore the possibility of mounting options for Noah's Tobii eye gaze communication device.   We were quickly met by the equipment vendor representative, and the independent evaluator.  

As soon as questions like "what do you hope to accomplish today" was asked, I thought well expect to be told that Noah isn't going to get a recommendation for a power wheelchair...

But to the contrary, I found that the independent evaluator was simply being a very detailed listener, feeling me out as a parent, and Noah as a child.  Understandably, I think there are some parents that are so desperate for their child to meet milestones and find progress and recovery that they can often times push a child beyond their limits, while other parents, like myself adopt the philosophy that all things are possible... but in what we call "Noah time" - it's when he's ready and not a moment before.  We are simply just the vehicle to allow Noah opportunities when he decides he's ready to accomplish something new in his life.   Neither approaches are wrong, but simply a matter of different parenting styles, which exist within both the special needs community and those parenting typical children.   In any event, I felt the evaluator wanted to know which style we more closely adopted  in order to know how to pursue the best independent power wheelchair options for Noah. 

I was rather distracted at this power wheelchair evaluation which left me feeling a little uneasy because I couldn't properly focus on Noah's performance and how he was doing opposed to the other trial attempts he did previously with a different agency that resulted in a rude therapist denial.  There was an elderly lady in a power wheelchair rather desperate to have a conversation with me about her twin grandchildren who were born with severe disabilities, and she wanted to compare Noah's age relative to his disabilities in hopes it would give her an indication of what to expect with her own grandchildren.   But cerebral palsy is a tricky thing like that.  It comes with a wide range of outcomes and prognosis.  And then there was Luke - into everything he could be and chasing him around here and there.   I had to just hope that Noah was demonstrating what I knew he was capable of doing and what he had seen him do many times before.  

I held my breath, still rather waiting for the tremendous let-down.  We've suffered so many negative blows that you come to expect poor news before the good news.  I don't think I believed it until the speech therapist repeated the recommendation the independent evaluator gave and they brought in the model of power wheelchair that Noah would be receiving.   It was one of those please pinch me I'm dreaming moments.  I knew Noah deserved this chance, I know he is capable of driving - it was just a matter of getting someone to see that. 

For the first time I think maybe ever, this evaluator confirmed what I always knew to be true.  Noah is cognitively very bright, that he craves to learn as he understands his surroundings and has the concept of cause and effect - that he is simply locked in a body that has many challenges. 

Noah will likely stop and go by using the sides of his heads, and at this time it looks like he will turn left and right by using his knees.  This of course could change with Noah's continued progress with all of his therapies and with age.  He has althetoid movements which he may learn to gain better control of as he gets a little older with more help.  And then he very well may be capable of driving with hand controls, turning or stopping with another method. 

Noah will be getting the Koala Power Wheelchair and it will be used in conjunction with his Custom Aspen Seating System.   Although Noah now has the therapist and doctor recommendation needed to move forward, we now await the Medicaid funding approval process, which unfortunately and inevitably takes time.  Our hopes are that Noah will have a power wheelchair by late summer early fall at the latest.  And we must also pray that there are no elements to the request that will result in a Medicaid denial and appeal.  

I couldn't be more proud of Noah and more glad that we sought a second opinion.  And, I think we really found someone who genuinely took an interest in Noah's needs.  I look forward to having this evaluator help us in the future with Noah.  Her expertise and knowledge are tremendous and I'm thankful that prayers were answered.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.