Tuesday, September 13, 2011

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.  





teamaidan said...

I'm feeling such joy that Trevy is so dang smart which just makes me want to slap those seizures that are stealing that. That kind of high followed by such a low requires a good cry.

Mrs. M said...

Oh Honey!!!
What a trooper! He's got so much more going on in that beautiful mind than anyone knows.
Trevy is so incredible....those tests are keep a momma on pins and needles...and then to knock your socks off!:)
Ugh...oh those nasty 10 sec seizures! They break my heart....for you, for Trevy and everyone of our little cuties who still have then rearing their ugly heads.
Hugs to you and high fives to Trevy!!

JSmith5780 said...

First, THANK YOU for having email subscription. I get so little time for blogs these days and I would have missed this!

Second, I am so thrilled to hear about his appointment!!!! These kids really know so much more than they can express.

As for the possible seizures. We went through various periods like this with Austin. We swore he was having absence, the teachers and therapists all thought so, we recorded them and went to Boston (when we saw you that time) and the EEG was "normal". Not 100% but no seizures. We finally said maybe he really is just processing. So, monitor, but don't panic yet. (I know, I know, how can you not)

Keep up the great work Trevy!

happy's mommy said...

Thanks, Girls. Love you guys.

I'm really not freaking out. I'm just sad. I'd love to believe it was just a processing pause...but it's not. Trevy has other seizures that we have captured on EEG...complex partials and myo jerks. For some reason I've just made myself feel better trying to convince myself that the staring was processing. But the reality is...his EEG is still quite active over his motor cortex with random spiking from that right blip too. Usually when I'm seeing breakthroughs I ask for lab work...and we've been increasing his meds. When we increase the meds...the seizure-y stuff stops. For awhile. It's been a couple months since I've seen anything suspicious. Hence the sad. It just feels like a never ending battle. And if the meds stop working every few months...how long before they stop altogether? Or we can't go up anymore? Maybe they'll always work...or maybe not. If we could just coast from here and never have to worry about another seizure again...I think I could manage it better, ya know.


He had a great day in school. No seizure-y stuff noticed yesterday or today.


lisa said...

Danielle...he is doing AMAZING! What a great visit! As for the seizure, I get where you are coming from. It sucks and it always will. I'm glad there is so much good to balance against the worry that those dang things will inevitably bring.

That's good to know his doctor doesn't recommend testing until at least 6. Julia turns 6 in February and the leaps she makes from month to month tells me your doctor is absolutely right. She's a completely different kid now compared to a year ago.

happy's mommy said...

Oh Lis...that gives me such hope!