Sunday, 29 April 2012

Roar For Autism

By the time Jack was Nathan's age I was taking him all over- we did all kinds of fun things together.  I feel like Nathan gets shafted all the time....I never take just him anywhere.  So today that's what I did.  Nate and I went with our friends Helen and Lila up to the Roar for Autism (for Kennedy Krieger) in Cockeysville.  I got some real quality time with the youngest member of our family.  The event itself is actually a bike ride/nature walk, followed by a family fun festival.  We just went to the festival this year- would've done the nature walk but there were no strollers allowed.  It was great because it was not huge or overwhelming.  Basically it was a huge playground and then several activities (such as balloon animals, races, a couple of crafts) none of which Nathan participated in.  So we played on the playground and then went to the resource tent (aha, mommy always has ulterior motives).

The resource tent.  Can I camp out in the resource tent?  Can my children and I live in the resource tent?  Because the word tent implies that it is a place where one can stay, no?  I spent probably 45 minutes in the little "tent", talking to everyone I could, signing up for every mailing list I could find.  It has been one of my greatest frustrations on this journey that we have one of the most prestigious autism research facilities in the world in our backyard and we can't be seen there.  Kennedy Krieger does not take our insurance.  Note the lingo of an insurance case manager....most people would probably say that our insurance wouldn't cover it.  It's mutual people (sorry, soapbox time)- Krieger doesn't like the rate that my insurance is willing to pay, my insurance is not willing to pay what Krieger wants.  Both are likely being unreasonable.  Meanwhile, my kids are the ones missing out.  I have done everything I can think of to keep the boys "in that loop".  I located a Kennedy Krieger developmental pediatrician who also has a private practice....where our insurance is accepted.  The boys have been there for developmental assessments.  So at least they are on her radar when she hears of studies, etc.  But I was hoping the resource tent might include some information on studies where I could initiate enrollment myself.  I wasn't disappointed!  Tomorrow I will set about emailing a bunch of primary investigators to see if the boys would be a good fit for individual studies.  And I am also expecting enrollment packages in the mail for the Kennedy Krieger school- so we can get them on the "waiting list".  The waiting list for autism programs and appointments is atrocious. It is also a testament to how great the need is and how limited the resources are.  The resources can't keep up with the explosion in the number of new diagnoses.  While I understand this in theory, I am unwilling to allow this situation to affect my children's care.  I have a feeling that I am going to have to become a very squeaky wheel, but I'm good with that.  On the positive side, the growth of autism diagnoses has spawned many new studies, and of course, these are not paid for by insurance, or the participants for that matter.  So we can go to Kennedy Krieger to participate in these.  They almost always involve at least 2 or 3 developmental assessments, in addition to genetic testing, other blood work and of course, interventions.  If this is the avenue I have to take to get the boys what they need, then so be it.

I spoke with a physician from Kennedy Krieger for quite awhile, she asked about the boys' current therapies, school, etc.  She talked to me about a few studies, and we parted ways.  While I was at another booth, she popped over and took down some more information on the boys.  Call me, call me!!!!  It's like having a my phone working??  How long will she wait to call?  Too bad you can't check for a dial tone anymore :).

Nate seemed to have a good time and had only a few minor meltdowns.  There was a constant wait for the swings, no shock there (for those that don't know, swinging is particularly soothing for a lot of kids on the spectrum- mine both have meltdowns whenever I try to take them off).  There was an elaborate network of "bridges" on the playset and Nate found a triangular pattern to run in and repeated it about 30 times.  Then he ran laps.  He loves to run back and forth over and over again.

our friend Lila joining Nate in his running.....

So I think Nate liked being the "big cheese" for the day.  I certainly enjoyed it!  He conked out almost as soon as we hit the highway to go home.  His little buddy Lila kept reminding her mommy and me to be quiet because "the baby is sleeping".  SUCH a cutie!!!!

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