Thursday, March 22, 2012

Maybe a bit hopeful

For over a year I have been actively engaged in the arduous process of trying to get services for both of my boys.  If you met them in person--even for just a few moments--there would be no question about their needs.  Really.  So it has been quite difficult to remain positive, civil and patient through this whole process.  I know other families who have been able to practically sprint through this process in comparison.  I also know a few families who have had to endure longer; so I strive to remain patient. 

The little guy was more apparent.  He literally vibrates at times; so he was a little bit more of a sure bet.  The hardest part has been for my older son.  He "seems" ok to a lot of people...casually speaking.  That is until you try to engage him--then you begin to see the kid I see at home.  However, because we have done such strong advocating for him, he has done pretty well in school.  Hence the delay in being able to see his real needs--the ones that don't always show up on some standardized test or by being able to check a box.  We had received one denial, were going through a review, and continued to play the waiting game.  Waiting for the magic designation that would help him now and as he morphed into some semblance of an adult.  And waiting, and waiting, and waiting, and waiting some more.

It had actually reached a point where I was toying with the idea of taking him to the illustrious committee who reviews the endless paperwork that was sent (we really are just murdering entire forests with all our documentation) and dumping him there for a period of time.  I wouldn't abandon him--just let them deal with him for a short period of time.  Without warning, without a TV, without a working mouth filter to prevent things from escaping.  Of course I would make sure he was comfortably seated in one of those snazzy rolling chairs too.  And I would be most accommodating--I'd supply a snack so they could witness firsthand the eating skills of a wild child.  I was nearing the end of my rope and willing to consider this all to get the magic nod of approval.

So, it came as a surprise last Friday that the powers that be--and that unfortunately is who they really are--decided that they might have been too hasty the first time around.  There in a very thin, basic envelope was news that impacted our family.  My son would be deemed eligible.  Huge news.  Shocking news.  News that reduced me to tears standing in our little post office.  Literally.  Actual tears and relief.  How lucky I was that the postmaster didn't call the authorities to remove the crazy lady in his office.

None of us know what the future will really hold for our children once we are no longer the ones who will be watching over them.  Despite all our well-intentioned plans and fervent prayers, we really don't know for sure.  For C. I was so afraid that there would be no supports beyond what we could do ourselves.  What an unbelievably frightening prospect.  For all of us.  It is such a great fear for me--not the leaving of this world--the leaving of my children and their respective needs and baggage.

So, this news was so unexpectedly promising since it meant there might be some future supports.  It means we might get some extra help addressing some needs and working on different skills.  The skills he will need to have when I'm no longer here to nag him to work on.  It meant he had been given the secret handshake to enter through the special portal to those selected--those deemed eligible.  So incredibly sad and frustrating that we have to endure these battles and paper wars to get things for our kids.  It leaves us weary and worn at times.

But sometimes...when it works in our child's favor for a change...it renews our faith, even if for just a little while.  It can make you even feel hopeful.   

 

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