6 at the earliest

 

 

Dr. Development was stuck in traffic which meant a late start to our appointment.  Which meant we’d get the shaft.  Or so I thought.

 

 

Actually…when her second appointment of the day was a no-show we wound up getting to spend a full TWO hours with her!  Teach me (for a few minutes anyway) to be so mentally negative!  Seriously…I’ve gotta work on this constant pessimism!  Someday…   

 

 

We talked about the repetitive movements.  She gave it a fancy name that I totally don’t remember.  I’m supposed to bring it up with Dr. Neuro at next week’s appointment as well.  She said it’s very commonly seen in children with Autism.  However, it is not only seen in children with Autism.  And right now, she does not think Trevor is displaying any other Autistic traits.   Bottom line…no one really understands the why or the what.  It’s believed to be a self regulator.  But…she reminded me…Trevy is his own unique little miracle anyway.  So who knows?  She said that.  LOL       

 

 

She was impressed with the progress he’s made since our last visit.  He was really good too.  Deceptively good!  Sitting in the chair like a little man.  iPad perched in his lap.  Watching YouTube vids.  He followed her verbal instruction to play with the toys in her bag.  A huge gain since the year before when we had to physically direct him to and even open the bag so he could see the toys.  His receptive language really has improved.  Even in these last few months.  Suddenly it just seems like he’s understanding so much. 

 

 

I expressed my concern that we’d be leaving with at least a hint of a more formal cognitive diagnosis today.  She was absolutely shocked and assured me that there was no way he’ll get that diagnosis without very thorough testing.  And furthermore because IQ tests in children younger than 6 are notoriously inaccurate the absolute earliest she’ll test him is 6.  And as long as the school keeps providing him appropriate services…she’ll put it off until he’s 8! 

 

 

I can’t even tell you the weight that lifted off me.  Two years!  We have two more years to keep pushing him as hard as we can.  Maybe four!

 

 

She then broke out a Simple Vocab test.  It was one of those flip book thing-a-ma-bobs.  Each page getting a little more difficult.  More choices.  Tougher verbal instructions. 

 

 

He did great through the first dozen or so pages.  Most were point-to questions with maximum of 6 choices.  Point to the dog.  Point to the spoon.  Some where what’s this? questions.  I was totally floored when she asked him “what’s this boy doing?” and he immediately said “running”!  Um.  I totally own that with our Special O project!  We were having a blast because he was doing so great.    

 

 

And then we came to the first tri-level question page. 

 

 

Trevy…can you show me what comes in many colors, is kept in a box and you use it to draw pictures? 

 

 

I was not surprised when he didn’t answer.  Too many words to process!  I thought it was over his head.  Dr. Development was giving me a funny look over his shoulder though.  His back was to me.  I could tell he wasn’t looking at the flip book.  She asked him again.  Still nothing.  I finally got a clue when she waved her hand in front of his face.  Of course.  The funny look was meant to communicate she thought he might be seizing.  For about 10 seconds he was non-responsive (or gone as she said).  Just long enough to be suspicious and short enough to be suspicious of your suspicions.  When he snapped back she asked him the questions again…he made the wrong choice.  I told her maybe it wasn’t a seizure but was a processing pause?  I was convinced it was just too tough for him.  She nodded and proceeded with the test.  He was again sailing through the easier pages.  When she flipped to the tough page again…I absolutely expected him to have the same everything. 

 

 

Trevy…can you show me what has four wheels, is made of metal and you place your groceries in it?

 

 

In the midst of a 10 array was a shopping cart.  A shopping cart which Trevy…without a pause…pointed at!  Now, do I think he understood everything in that tri-question?  No.  It was definitely too many words.  But he understood enough to make an educated guess.  And that’s totally amazing!

 

 

More pictures.  More right answers.  Some wrong answers too.  But pretty much…he was doing great.  Then another tuffy question page.  Another right answer. 

 

 

At this point, Dr. Development gave me a look and said she was 100% convinced that he’d had an absence seizure but just to be really really sure we’d go back to that first question which he failed to answer properly and see what happens. 

 

 

Trevy…can you show me what comes in many colors, is kept in a box and you use it to draw pictures? 

 

 

Without hesitation he pointed to the box of crayons.

 

 

Tears sprang to my eyes.  I told her I was happy she was there to witness it.  And I meant it.  So at least when I tell Dr. Neuro and the school they’ll know it’s not just Trevy’s Crazy Over Protective Mommy.  Also, so when I analyzed it later and tried to convince myself it was all in my crazy head…I would know I was wrong.  As morbid as that sounds.   

 

 

And crap. 

 

 

I haven’t seen one of those in a while.  And to be honest, I had all but convinced myself they were processing pauses and not seizures at all.  Even though in the deepest regions of my Seizure Mommy heart…I knew.  I’ve always known.  He’s not seizure free.  He’ll never be seizure free.  Just because I’m not seeing them.  Or I’m desperately coloring them with a different brush.  It doesn’t mean they’re not there.  I felt silly for crying over a little 10 second absence seizure.  I mean, seriously, compared to what we’ve lived through.  To what so many of you are living through.  A 10 second blip shouldn’t mean so much.  And yet it does anyway.  God…it sucks.  And it scares the crap outta me because if that’s there…what else is hiding.  Waiting to spring on us without warning.  What else have I been missing?  Or dismissing.  There really is no peace…even during the calm seizure seasons…there is no deep rooted peace that this is over.  And that’s the rub with life with seizures.

 

 

But really this post was totally not supposed to be so long.  Or sappy.  Yesterday was a great visit.  I left happy that we have two years to keep pushing.  I left happy that he’s come so far.  And happy that he’s my little munchkin and I’m his mommy.  God, I love that kid.  There is so much uncertainty and heartbreak.  But there is joy too.  Sometimes it’s just a teensie weensie glow in the bottom of my soul.  But it’s there too.  And the sinister can’t entirely extinguish it.  

 

 

…danielle