connecting the dots

I took time off of work in January & February. I intended to relax, rest, watch TV, etc. That didn't happen. Instead, we spent that time moving two steps closer to understanding our son. Let me explain.. and stay with me; it's therapeutic for me to write!

When Jonah was a year old, he was diagnosed with sensory processing. The psychologist at Sparrow Hospital was the person who originally told us, and with great relief we started to do some research. I didn't mind the label. I was glad there was a reason that life seemed to be so atypical. And so our journey began....

At another appointment, the same psychologist asked if he drank a lot of milk. "Definitely," I replied. He drank tONS of milk, and actually, I was proud of it. He wasn't a juice drinker. My boy drank MILK.

"You may want to look into that..." was all I remember her saying. I did a little research about consuming too much milk but didn't really find anything. I had him tested for allergies later; he wasn't allergic to any foods. I moved on...

Last year in preschool, he just glided through. There's always struggles and problems with him, but as far as school, he appeared to be "typical." So I didn't give his teacher this year much warning when school began. I wrote her a letter, explained SPD, told how she could calm him, and gave her some warning signs to look for when he's getting overstimulated. Shame on me. It's been a long year.

AFter being in the principal's office two or three times at the start of school, after running out of the school building, after countless times hurting other kids in his class, etc., etc., etc., we're finally at a point where progress is being made.

Jonah's teacher loves him, thankfully. She "gets" him. And I can confidently say that, in our situation, to be understood is the most loving, compassionate gesture that someone can show us. Don't pretend to relate. You can't. Don't try to give advice. It won't work. Don't think you would do it differently. You couldn't. (Whoa! That's obviously my soapbox!)

Okay, back to my story :) Here's what we've discovered this past month. Jonah cannot properly digest dairy products. Dairy forms peptides in his body which act like opiates. The peptides then alter his behavior and responses to his environment. The doctor actually summarized it by saying that milk products act like "heroin" to him. Wow.

We also learned that Jonah has increased levels of many brain chemicals. This gave me scientific evidence for everything I've ever known about my son. Norepinephrine is the brain chemical associated with heightened states of emotion; it's the transmitter responsible for "flight or fight." Your daily levels should be 35-45. The reference range was 4-93. Jonah's level was 113. Wow. Jonah has always had a problem with aggression that doesn't match the consequence. For instance, Lydia may pick up a puzzle piece when he's working on a puzzle, and he'll hit her over and over again for doing it. It's never made sense, and discipline has never changed what he does in these situations. It's almost like he's out of his mind. Now I see-- his brain goes into "flight or fight" for everything-- even all those little things that his little sister does to annoy him.

We were able to take this information a step further. Shortly after I explained these levels to my brother who's currently a counseling grad student, he read where trauma victims are affected neurobiologically. There's evidence that trauma changes a victim's chemical makeup. In Jonah's case, his brain had to produce so much norepinephrine to keep him alive when he was first born that it became the norm.

So how has this information changed our life? Jonah is currently taking some supplements to decrease anxiety. It's not medication but rather a holistic approach to change his brain levels. Between the non-dairy and supplements, we've noticed a slight change-- nothing drastic-- but I feel more comfortable with this approach. His personality is intact and life is a little less tense.

We've also been working closely with the school to get Jonah an IEP (Individualized Educational Plan). The school initially said that he couldn't receive an IEP because he wasn't behind academically. In fact, he's quite the opposite, but FUNCTIONALLY school is not an appropriate place for him to learn-- and so the law did help our case. The other hurdle has been that because Sensory Processing Disorder is not in the DSM (Diagnostic and Statistical Manual) yet, the government doesn't acknowledge it as a disability that requires school systems to provide accommodations. He needs one DESPERATELY so that he can receive accommodations at school-- primarily a consistent adult who is aware of his sensory needs and can help him meet those needs in order to comply with school rules and respect his classmates.

We got good news a few weeks ago. Jonah will have an aide working with him at school! It's a huge answer to prayer for us. It's been an exhausting few months of researching, reading, and praying. I was emotionally spent. Not any more though. I'm just SO THANKFUL.

It hit me again. Jesus loves Jonah more than I do.