IEP meeting 2014

We had possibly the most positive and promising meeting (of the seemingly 100) that we have ever had with Elijah's team at school. This was his official IEP meeting where we put plans in place for the next year while he is in school.

I requested starting the meeting with a little talk and the team allowed the overly protective mother to speak. :) Since Dr. M couldn't join us (he will be joining us on Dec. 1!), I wanted to stress the pervasiveness of NLD on Elijah. I explained how difficult it has been to get people to understand what WE know about him, so I attempted to describe it with a visual aid.

When Elijah is at his best, he is riding just below boiling point. Boiling point is the point we all get to occasionally when we stretch ourselves too thin, don't get enough rest and don't give our bodies proper nutrition, etc. When we get to that point, we begin lashing out at others, we are unable to control our emotions and we don't sleep well, among other things. It does not take much for Elijah to get into the boiling range. Once he is there, it takes him a looooong time to come back down. This process can take weeks or months, depending how thin we stretch him. A more typical progression into boiling point is a much more gradual curve. It takes time for most people to reach that stage and once we get there it is much easier to come back down to a normal range.

An important thing to point out is WHY Elijah is like this. Why does his baseline sit just below boiling? At some point during, before or after his birth, his heart condition and resulting improper bloodflow/oxygenation damaged some pathways in his brain. This caused his brain to re-route, like a detour. Imagine yourself driving down the road, intent on a destination. Maybe you have an appointment you have to get to within a certain timeframe. Suddenly you encounter a detour. You are forced to stray from your path, taking turns on uncertain roads and at times going in the complete opposite direction from your destination. Eventually, though, you return to your path and you arrive at your destination, although you are now frustrated, tired and LATE.

This is how Elijah's brain operates, which carries the label Nonverbal Learning Disorder. He can arrive at the same destination as the rest of us, but it taxes his brain to do so. Interpreting a social situation or processing a busy, noisy grocery story might be enjoyable things for him, but they require a lot of extra processing. This puts his brain into overload, which renders him incapable of doing much beside just scraping by.

Elijah's team was so awesome. They were receptive to my little speech and said so many positive things about our oldest boy. They described him as friendly, happy, smiley, affectionate and kind. His teacher told us that he is the most affectionate student she has EVER had. Just like at home, he always seeks physical closeness and hugs from adults he trusts. They seemed to understand that his negative behaviors stem from the NLD and that it was going to be a process to get him back to his baseline. In the past few school days he has been showing signs of improvement with name-calling and aggression, which we all see as a very positive sign.

There are a few strategies in place which involve OT, social and behavioral coaching/intervention. Starting immediately, he will receive two 30-minute sessions away from class with his sp-ed case manager every day, as well as 15 minutes each at the beginning and end of each day where he can gradually integrate into and out of class. In addition, he will receive 15 minutes twice/week with his DAPE teacher (adaptive PE). We will continue doing partial days and re-evaluate at the end of December. I made sure to let the team know that Elijah is likely (99.99%) to not be ready to return to full days any time this year unless we want him to soar back up into the scary realms of boiling. Mr. F assured us that nothing would be written in stone regarding length of school days, so we can play that by ear. I asked about getting Elijah an aide, and Mr. F explained that the resources aren't available at this point to give him an adult dedicated solely to him. However, he is hoping to shift aides around a bit to accommodate E a bit more while he is in the classroom.

I am looking forward to our meeting with Dr. M on December 1st. I know he will have insight to share with E's team. We plan to bring him down to the classroom to ask for suggestions about reducing E's visual processing. We are so thankful that his team is willing to attend yet another meeting to better understand our oldest cutie and we are thankful that we have a(nother) incredible doctor who is willing to go to great lengths to make his life more successful.

That's all for now! Dan and I have not spent time together since last Wednesday, so I must go snuggle with him. This coming weekend will be a much-coveted time together as a family. ALL of us will be together! I can't wait! Have a great week and thanks for peeking in.