Wednesday, November 30, 2011

It was scary....

Last week, Dylan's tutor sent us a video of Dylan working.  She always does this for the parents of the children she works with to show us all the magical things our children are learning.  On Tuesday, she worked with him and show the video and he did this weird head/eye roll thing.  I chalked it up to his being silly.

Then, after his work with his tutor, he went to go play.  His day care has this two story play area (think a McDonald's type playland only mesh).  He proceeded to have an epic, earth shattering meltdown.  He latched onto a pole and had to be pried off (all the while hysterical crying).  He then laid down and refused to move.  Just crying for Mommy and not saying what had happened.  I got there about 15 minutes into it and had to crawl into the structure to get him.  Ordinarily, he would have acknowledged me but he didn't.  I pulled him onto my chest and he was dead weight.  Just crying and mumbling.  After another 15 minutes or so, he was calm and we climbed down.  We went home, had dinner and I put him to bed.  I sat in our living room and my brain went into overdrive.  Something was off with him.  His energy was off.  He wasn't acting like himself.  I spoke with the tutor and she agreed, something wasn't right.  We called the doctor.  The next morning we went to the pediatrician (new one who we adore).  He thought it may have been a seizure so now we have to get into see the neurologist.  The one he reommended wasn't available till January 25th.  The one we saw years ago at the children's hospital wasn't available either but his nurse had him call us.  I showed him the video.  It wasn't a seizure - more than likely some self-stim behavior.

What happened in the play area?  Well, that could have been a seizure of some sort but "we don't chase one seizure".  He said that it's not like we can put him on meds for seizures without proof that he had a seizure.   When he had his seizures as a baby, his EEG was normal.   So chances are, if he's following the same pattern, he'll have a normal EEG and medication wouldn't be warranted.  Plus, if it's one seizure, how do measure if the medication is working.  Dylan's seizures as a baby were uncontrolled.  5 tonic clonic seizures in a day.  That's why they put him on medication.

Hopefully, this was just a scare and nothing more.  Good news is that he can start his new ADHD medication.  The first one ended up giving him stomach aches, aggression and he was picking his fingers raw.  Hopefully this one will do the same for his attention without the side effects.

Monday, November 14, 2011

What a difference almost a year makes!

About a year ago, Dylan won a box of figits from the lovely  I had used this as a teaching moment and Dylan wrote her a thank you note....

Recently, Dylan rode in a fund raiser for his stable.  I asked him to write a thank you note and this is what he did....

It's amazing what time and hard work will do.

Thursday, November 03, 2011


Dylan has really been enjoying school this year.  The medication has improved his attention span which is allowing him to learn at a much greater pace.  He's starting to read (he currently loves to point out the word "the") and it's just such an exciting time for us all.  His teacher uses this great website called Star Fall.  He enjoys it so much that he'd rather work on his reading than watch TV (Score!). 

He really needed a dedicated workstation in the house.  We had one set up from last year but he really has outgrown it.  We have a recliner in our living room which we never use (other than to dump our coats on) so we moved that into the attic and went to Ikea and picked up a small desk for $20.  We got him a chair (that swivels so if vestibular stimulation is needed, we can just spin him around in the chair - wheeeeee) and a little foot rest.  The desk is perfect because it has a gully on the back that holds a pencil holder and other small items which allows his work space to be free of distractions.  We did need to put a small desk lamp on there because the lighting in our living room stinks.  He does mess with that a bit so we may have to find an alternative.

The other day, he wanted to work on his letters on Star Fall so I put the laptop on his desk and he just worked away.  He's gotten so good at the computer it just blows my mind.  In his classroom, they have a huge smart board that they use for Star Fall (among other things).  It's funny when Dylan forgets and tries to use the screen on the laptop as a touch screen.

Friday we saw our developmental pediatrician.  He was thrilled at how well Dylan is doing on his medication and was very pleasantly surprised that there have been no side effects.  He's eating and sleeping well and has exhibited no tics. 

Monday I took a half day and went to his Halloween parade and volunteered in the classroom for the party.  Fifteen minutes before the parade was to begin, we started to get the kids ready.  Each child was taken to the bathroom and then brought back into the room to get dressed in their costume.  About 5 minutes before the parade was to begin the fire alarm went off.   We lined up the kids and led them outside (our poor sensory seeker with their hands over their ears did great).   They lined up in their designated spot, the teacher did a confirming head count and asked the children to sit on the ground, cross legged as "model students" (when she asks them to do this, they know to be quite and place their hands in their laps).  They waited.  From time to time, we got whiffs of smoke.  Turns out someone put a box on top of an oven which was on.  It was a small fire that the staff took care of but required the fire department to come out anyway. 

After a while, the older kids got restless, stood up, started taking photos of each other, laughing and horsing around.  Their teachers tried to get them to sit back down and be quiet but it was like hurding cats.  This whole time, Dylan and his classmates just sat on the ground, looking around quietly with their hands in their laps.  I said to his teacher "you must be ready to burst!"  She asked me why and I pointed at the class and said "look at how good they are being, all the older kids are misbehaving but here they are, our model students, this is all you and your staff's hard work.  You must be so proud!"  She was and make sure the kids knew it. 

We had our parade and went back into the school and had our party.  His teacher picked up dye free cupcakes at Whole Paycheck (LOL) and we had chips and fresh fruit and juice.  It was lovely.  We left and went home and relaxed for a bit and then went out trick-or-treating.  We ran into our neighbor and hung out with her and her two kids.  It was fun.  She pulled along a wagon complete with a cooler full of beer.  Kids got their treats and we got ours ;)