Tuesday, October 23, 2012

Closing the Gap (aka Clearing the Grand Canyon in a Single Bound)

It has been a few weeks since my last post.  Since that time, we have had another round of ABM with Pati in Lino Lakes.  Things went well this 5 day-10 session round.  Roa responded so well to the motor patterning working on rolling, moving to sit from lying, getting from knees up to his wheelchair and using his arms more in reaching.  We have seen one big earthquake that registered- Roa is doing some walking with support at his shoulders, not supporting him under his armpits like usual.  This is a great step.
So, along with that, Kelly, PT at Courage Center has lent us a Gator reverse walker with forearm supports.  Roa is doing some nice slow steps with it.  His arms are not strapped down, his trunk is unsupported.  Praise God!  This is good.  Baby steps towards walking.

Roa also has been using some spontaneous words.  "Go, Up, Out, All (for all done), Ha (for Hi)"  This is also so good. 
His therapists at Functional Kids and Conductive Ed. have commented on how motivated he is to follow motor commands and sit and stand up with more stabilty.

Are these changes from the Anat Baniel Method with Pati?  We are unsure, but it is definitely a sign to continue down this path.
Another sign for a path less taken, Pati mentioned that she thinks the Masgutova Method and reflex integration work would be very beneficial for Roa.  Thus, like a lightening bolt from God himself, we know that this is something we need to start saving for.  Another method of hope not covered by insurance.

Which leads me to the Closing the Gap conference we attended this past week. This conference, held in Bloomington, MN is one of the largest assistive technology conferences in our country.  Vendors are there toting their wares from apps, to power chairs, to smartboard programs, to weighted blankets.
Roa tried a power chair controlled with head movements and love it!  Tooled around the booths, smiling away.  We also played forever with a smartboard program that lit up with butterflies, colors, and music at Roa's slightest touch.  Roa also tried a smart little floor wheelchair called a ZipZac. Basically a Bumbo chair/ Childrite seat on wheels, it allowed Roa to wheel around on the floor with other kids.

So yes, we saw the wonders of the special needs world, things that would make Roa's life alittle easier, a little different, a bit better.  But for a fee, a cost, a copay, an investment.  EVERYTHING in CP land costs big.  From therapies to bath seats. From pencil grips to van ramps, a large chunk o' change is required.
And, I'm tired of requesting for donations.  It is humbling to rely on the kindness of family, friends, and strangers-that-care to provide for your child's needs.  As we enter yet another money sucking therapy venture, it is impossible to ask for more from people who have given already.  At this point, those that want to give have done so.  Those that don't want to give, won't.  Simple.
It is hard to stomach some days, the thoughts that the parents in Typical Land look for donations for hockey fundraisers or boy scout camps.  Parents that save for trips to Disneyland during school breaks instead of driving 20 minutes to Closing the Gap.  We parent of CP Land do cartwheels when we get a $10 donation that covers a meer 6 minutes of therapy.  Typical Land parents throw $10 out the window at McDonald's without giving it a second thought.

I have hear many recommendations that we apply for aid.  We have. We are the Middle Class. We don't qualify.  When Bryan lost his job we received aid.  Since his return to work, that aid ended.

So we strolled around the vendor's booths at Closing the Gap, realizing that Our Gap is   H U G E.  We are as far away from the ZipZac chair as we are from Disneyland. 
Am I whining?  Yes.  It is unfair that Roa has to go through all this just to be a kid.  It is a bummer that we have a $1600 copay for dental care this month along with trying to save for December's ABM round, and possible a new walker in the near future.  Top all that with my continued course work studying CranioSacral therapy that is an additional bill.   I think we deserve the right to whine. 
We don't like to look for hand outs to help our son.  We would love to supply everything his little heart desires to live a happy life just as we do for Gunnar.  But the gap in price between Gunnar's Go Deigo Go Trike and Roa's Rifton Walker is a far as my misty eyes can see.

1 comment:

  1. If you are looking for anything specific, let me know. We have gotten almost all of our equipment from craigslist and I can keep my eyes out for you too. Also, if you need, I have an aquanaut potty chair that Jeremiah is too big for. I loved it and sure wish there was one larger just like it. Let me know. Stay strong. You're a great mommy!


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