Thursday, 7 November 2013

Our New IEP

Today was the big meeting for Nathan.  As I stated when I posted my IEP feedback letter the other day, I approached this meeting from a far less logical, clinical perspective than I typically do.  I am too worried about Nate to bother with formalities.  It hit me this morning why I have been fretting so much- obviously any parent would be frustrated by how slow progress has been, and of course that is part of it.  But I realized that the feeling of panic was coming more from my fear that the school would “give up” on him.  This may not be rational, but it’s what I was feeling.  I think I have earned the right to be a bit irrational- going through this with two kiddos, two of the people you love most in the world, is no joke.  It’s taxing, it’s draining, and it’s scary as hell.

The first thing I did when I got to the meeting today was pull up the below video of Nathan.  I have posted this before, but if I’m being honest, I never ever get tired of watching it.  I had promised his teacher at the beginning of the year that I would show it to her, as it is a snapshot of the little boy he was becoming before he regressed.  Keep in mind when you watch it that he was not even one at the time, so there is not much language involved- but he is looking right at me, answering me, looking at Jack, waiting for our reactions.  He is completely and fully engaged.  I was showing it to her as everyone was getting organized and they could hear Nathan on my phone- the OT asked what it was, and Nate’s teacher said, that’s Nate responding appropriately to his mommy, before he regressed.  She whipped around so fast she must have gotten dizzy.  They all seemed so shocked.  My purpose in doing this was not to make them feel sorry for Nate or our family.  I wanted them to see his previous level of functioning first hand.  I think that many times, professionals hear parents saying that their children regressed and frankly they don’t believe it.  They think that mom and dad missed the warning signs, that they just weren’t looking for the right things.  In our case, this mama was looking- obsessively.  This video was taken within three months of when Jack was diagnosed with Aspergers, so needless to say, I was on high alert.  I am so glad I have this piece of “evidence”.  One cannot deny what is playing out right in front of their eyes.  I think it had the desired effect.

I am proud to say that I only cried once, and teared up one other time.  I cried when I looked at the “goals”.  I cried because they haven’t changed- in fact some have been adjusted to be “more realistic”, ie, lower on the totem pole.  It’s hard to see in writing.  We discussed how difficult it is to get him engaged in any constructive activity- discussed sensory strategies, etc.  I was told that the school would be willing to train the teacher and aids on the Wilbarger brushing protocol:

This is something we did with Jack for a while several years ago, but eventually gave up due to the high frequency of the procedure- every 2 to 3 hours.  Jack was in preschool, then in pre-k and always had a daycare provider and coordination was just too complicated.  I think Nate has a much greater need for this type of input.  Says the mommy whose hands are often sore from providing deep pressure.  So between me, the school, and Cisco Center, this may be a viable option, which would be awesome.  I broke out the brush tonight just to see how Nate would tolerate it- his eyes literally rolled back in his head.  Poor kiddo.

Anyway, here are the results of the meeting:
-Nate will continue to have an aide- she is divided between him and another child (the ratio in class is already quite low, so this will work)
-Nate’s speech will change from 30 min sessions to 15 min sessions, which is entirely appropriate given his current attention span.  Additionally, the amount of time the speech pathologist will be spending with him will basically double and for now they will be working with him one on one.  Previously his sessions always included another child.
-If you can believe this, Nate has been getting ONE 30 minute session with the OT each month.  For Mr. Sensory.  These poor OT’s are stretched so incredibly thin, often covering multiple schools- there is just no room for true OT in the school setting because of these limitations.  That being said, his OT time will double.  Session length will decrease, which means they will occur with greater frequency. 
-Nate will be given a “trial” with the IPAD app Go Talk Now in the school setting.  If he is receptive, which I think he will be, we will have an ipad to bring home with this app on it, and begin using it at home.  We will also be implementing physical PECS in the meantime, as he has been more and more receptive to this.  One of his therapists is going to coordinate and make sure we all have the same pictures.
- Miss Gwen- oh Miss Gwen.  She is the magician that comes to our home on Mondays.  Her time with Nathan is going to double.  Two one hour sessions each week.  For now the second session will occur in the classroom, but she is willing to go to Cisco, and the plan is for her to possibly attend one of his Cisco days and a private OT appointment to see what is working for them.

Could this be any better?  I honestly don’t think so.  His teacher thanked me for my honest letter, and it feels like we are all on the same page.  The communication between the different therapists really impressed me at this school, they seem to be truly working together to develop a consistent plan for Nate.

The only downside for Nate right now is his study medication.  All week, almost every professional that regularly comes in contact with Nate has commented on how irritable he is.  He is usually a very easy going kid.  This is the most common side effect seen in kids with autism when they start Aricept, so at first this really bummed me out.  But I went and read several studies on the use of Aricept in this population and discovered that if this particular side effect persists, the dose can be decreased to help.  But the more interesting tidbit I found was several anecdotal reports of parents stating that they noticed that with this irritability came an increased awareness of environment and increased affection as well.  At about the 6 week mark in these same children, a marked increase in receptive and expressive speech was observed, not just by parents, but in repeated assessments- the results were clinically significant.  Again, this is a very small trial, but after all that we went through to start this study, I feel strongly that we need to stay the course- I need to know that we have given the medication an appropriate trial.  In the meantime, Nate climbed out of his bed 4 times when I was trying to put him to bed last night and screamed bloody murder every time I calmly walked him back to his room.  Am I crazy to think this might be a good thing?  Because I do.

One IEP meeting for the year down, one to go- but not until April thank GOD.


  1. I love what a great mom you are!
    Amy Cornett

    1. thanks so much Amy, I am trying like the dickens!

  2. Jenny, you amaze me! stay the course sweetie your kids couldn't have a better Mom or advocate.
    they are SO lucky to have a strong mom like you.

  3. I've just discovered your blog and your boys are adorable! I too have a loved one with ASD, so I'll definitely be keeping up with your blog! Best wishes to you and your family! :D