A very special boy

All of us like to think that our children are special- they are the cutest, smartest, and most talented kid in the room!  That's part of the unabashed bias that comes with being a parent and those of us who don't take it to some crazy extreme need not apologize for it- it's normal!  But what happens when you are told your child is 'special'- as in different, challenged, or the dreaded 'special needs' label?!?  What happens to your dreams (your personal ones and more importantly those you have for your child) then?  What happens when your world falls apart?

As some of you know, my son Nicholas is a living, breathing, walking, talking miracle.  (I know that all children are, so please don't get offended!)  He had a disasterous start to life- arriving on the scene more than 2 months early, spending 7 weeks in the NICU hooked up to machines and feeding tubes, and fighting off not 1, but 2 life threatening infections.  There were many nights that Alex and I prepared ourselves for the very real possibility that we may never get to bring our little boy home.  But then on Feb 23, 2009 he did come home!  By the grace of god and through your thoughts and prayers, we were going to be a 'normal' family!  And for 6 months we were...and we loved every minute of it!  The sleepless nights due to him crying were far better than the sleepless nights of worry in the NICU and nothing was going to bring us down- we had our beautiful little boy!  And then the bottom fell out...again!

When he was 8 months old we noticed that he didn't like to use his left hand and would sometimes ignore it all together.  Knowing this wasn't normal I scheduled a doctor's appt, hoping for reassurance that everything was fine.  That was not what we got.  His pediatrician looked at us and said, 'You're right, that's not normal.  He probably has CP or had a stroke or something.  We'll get you in with the neurologist.'  And she walked out.

We sat there, shell shocked...not knowing what to do.  We heard the words she had just said but what did they really mean?!?  And did she realize the implication and the impact that they carried?!?  Our 'normal' happy family was suddenly shattered as we were now 'special needs'.

This started the dizzying whirlwind of neurology appts, EEGs, case managers, and PT/OT evaluations.  Luckily Alex and I had both navigated this system in our professional lives, but neither of us was prepared to do it with our own child.  I became my child's strongest advocate.  When they told me he 'barely' qualified for OT services I demanded he get them anyway- really what does an 8 month old do in terms of fine motor skills, anyway?!?  But I wanted the services in place so that if and when his deficits became more noticeable he would already have the help he needed.  We got mixed reports and had a series of emotional ups and downs that would make a bipolar patient cringe.  But the bottom line was always the same- what did this mean for my beautiful little boy who had already had to fight through so much?!?

Does Nicholas have delays?  Sure, that's undeniable.  The boy didn't walk until he was 18 months old (almost to the day) and the other kids at school used to run circles around him.  But now he's walking, and running, and riding his cars.  He's feeding himself with utensils and drinking out of open 'big boy' cups.  He sings his ABCs, counts to 12, and can identify his letters- did I mention he was smart?!?  He still has trouble climbing, navigating stairs, catching a ball, and some of the other more 'athletic' things- which I know is hard on Alex.  But he's happy and healthy- that's what matters, right?!?

So why did the most recent report from his neurologist yesterday come as such a blow to us?!?  Why did Alex hear him say 'best case scenario' multiple times but still leave the office disappointed?!?  Because every parent wants their child to be 'normal' or above average- and hearing that a year of PT/OT hasn't erased the 'special needs' label was hard to take!  (on top of everything else that's going on right now!)  He told us to 'keep at it', to 'keep challenging him', to continue PT/OT until he's not making progress (which per both his therapists is still coming at a fast and furious pace!)  But at the same time he said 'best case scenario' he also mentioned 'Challenger Sports'- which for those that don't know are leagues for kids with various physical and developmental handicaps.  What the hell!??!  For those that have met Nicholas (who is a tank, and did i mention that he runs?!?) you understand that putting Nicholas on a Challenger team would be like putting Shaq on a middle school basketball team!  So the mixed messages continue and the emotional roller coaster shows no sign of letting up...and the unparallelled joys of watching him accomplish something like walking are somewhat tempered by the questions and the unknown that the future brings and his label carries.

This is not so you feel sorry for us- that is the last thing that we, as a family, want!  This is so that you may understand one boy's journey- and his family's struggle- to find that 'normalcy' we all crave.  We count our blessings every day, b/c there was a time that not having him as part of our lives was a very real possibility.  But as you see children, or adults, that are different- even in small ways- please remember there is a family that loves them dearly, that there are likely dreams that were abandoned, numerous heartaches that litter a very long road, and an optimism for acceptance.  My son has come a long way- he's made amazing strides- and I couldn't be more proud of him or love him any more than i already do.  And if you've met him, you love him, too.  (he has that effect on people!)  I just hope that as he grows, if he does have any outward sign of the struggles he's had this will be overlooked and not judged by those around him.  That is this mother's wish.