Adapt and Decieve

Adaptation is the name of the game when you have a child with special needs.  What ends up being insidious about it is how each time you adapt it deceives you.  It often takes an outside event to bring into focus how much you have adapted and altered your life to suit your child.  In my case: it was Jeff's death.

My little, J2, was an easy baby.  Easier than his brother who had major reflux as a child (another story).  Instead, J2 had some reflux but it was easily controlled with one medication.  He was a smiler, a happy baby, one I could cart around with me and would sit in high chairs or strollers or car seats.  That all changed at 14 months.  At 14 months he started having tantrums and I thought "damn, the terrible two's started early with this one."  The tantrums only got worse.  It is hard to qualify this but you just adapt to keep peace in your house.  You don't even think that something else is going on. 

I have a number of friends with autistic children.  A few of them waited a long time to take them in for evaluations and I couldn't fathom why.  Now I know. You adapt again and again and again until suddenly the mirror produces someone you don't recognize.  Each time you adapt you deceive yourself without conscience thought.  You alter to the new normal.

J2 didn't like loud noises, bright lights, crowds, the list goes on.  It was easy to just use the divide and conquer mentality.  I took J1 to an activity and Jeff stayed home with J2 where he was comfortable.

That all changed when Jeff died and I came face to face with two realizations.  One, I was alone.  And two, that I had a problem with my second child.  I didn't know what it was.  I just knew something was going on.

Days before Jeff's first seizure I took J2 for a speech evaluation with the county because I knew he was delayed.  They pretty much put me on hold for a few months to wait for his PE tubes to be in place.  It was May before they told me no services.  I went to a private speech therapist for him at that point.  None of this surprised me, Jeff had needed speech services as a child.  It seems like needing speech services is fairly common in children.

It was around the same time both my boys started working with their 3rd and final grief therapist.  About 4 months later, J2's grief therapist came out and spoke to me about Sensory Processing Disorder.  She had a handout and a checklist.  It made sense. 

As I read the information I saw Jeff in so many of the attributes of SPD.  I remember the first dinner out with Jeff's 3 closest friends.  One friend, KK reached over the table and grabbed the sugar packet caddy and placing it by her plate.  Saying something to the effect of "this stays here."  I remember thinking "OK... she must really need all that sugar."   I did think it was very odd.  It was much later that I learned that KK was willing to sacrifice her first impression to allow Jeff to keep his good impression.  Because he fidgeted with the sugar packets.  Jeff would pluck one out, bend it, twist it, fold it, play with it until it ripped and spilled on the table.  Then he got another one.  He did this throughout dinner.  It was his way of coping with a situation that required him to sit still.  It was just one of his many quirks that I and all his friends accepted.

It all seemed to connect so I signed up for an Occupational Therapy evaluation.  A few months later, I got the results.  J2 had multiple areas of SPD.  We started on 2 hours of OT a week on top of the one hour of speech a week.  I took him back to the county, and again, the county denied him services.  I was stumped.  I clearly had a child that had issues, speech and sensory.  How can he not qualify? 

At this point I was advised that maybe an official medical diagnosis would help with getting services from my county who is "well known for being difficult".  I took 6 months to get an appointment with the neuropsychology department and during that time I started to scare myself into thinking J2 was on the autism spectrum.

I had J2's consult and it isn't autism, "not even a hint".  Instead, he was diagnosed with ADHD.  So many elements fall into place with this.  So many ways I see myself and Jeff in J2.  I think either of us could have qualified for the same ADHD diagnosis.  I see Jeff in the way J2 covers his ears with a loud noise, I see Jeff when he complains about the bright lights, I see Jeff when he spins around in his chair until he falls off, I see Jeff when he fidgets with something in his hands at the table, I see Jeff when he falls down, I see Jeff when he knocks things over.  I hear Jeff in J2's rapid fire speech patterns.  I hear Jeff in J2's jump from topic to topic, in his excitement over events.  I see myself in the way J2 can't sit still.  I see myself in his anger, his meltdowns, when he cannot control himself or the situation he is in.

I appealed the decision with the county.  I forced them to conduct a full evaluation on J2 and guess what?  They found that he did qualify for services after all.

My heart breaks for this child.  The combination of all things that could go wrong from both of his parents.  There is one thing that Jeff's death has done for this boy: it has lifted the deception of "normal".  What was the new normal in our house was not normal.  Now I know why.

Now what do I do?

I adapt. 

Sincerely,

Jeff's Widow