Thursday morning came without much fanfare. I dropped the little boy off at kindergarten for a very short day. I came back a little over an hour later and we made the trek down to Sacramento to the Autism Medical Treatment Center. This was our second day in a row of visits there.
This was our six month follow up, from his seizure diagnosis. It was six months ago, we met the man who has become our superhero, guide, mentor, sage, and what-have-you.
Last year, I was searching, learning, forming opinions and trying to figure out where we were. When I got the diagnosis for my son at 3 years and 10 months old, I felt like we’d been dropped with a parachute in the middle of a deep forest called autism.
Dr. Michael Chez is an unassuming man. If you passed him on the street, he would not stand out to you. He doesn’t wear a cape. He’s not haughty or dismissive. He’s unlike many a medical professional I’ve met as lawyer, cross-examining doctors at trial, and in my own life experience with health care providers.
He’s kind, honest and open. He genuinely wants to help. And best of all, he knows how to navigate a very foggy road.
In early October, just after my son’s EEG revealed seizures, Dr. Chez started treatment, prescribing Depakote and other drugs. Before my son took the first dose, Dr. Chez had the on-staff psychologist come in and perform an assessment for a “baseline”. I never got the results before last Thursday.
We all talk about assessments. We have them when our kids are diagnosed and when they begin speech and OT and ABA and as they get older. These assessments rate our kids against neurotypical children. They tell us what age our children with delays are functioning, i.e., Johnny – chronologically age 8, for example, functions at the level of a neurotypical 5 year old.
I know someone told me where my son fell on this scale. I know I read it. Until last Thursday, I, seriously, did not recall the results.
I do remember last October, that when Dr. L started assessing my son that I, foolishly, tried to help or prompt my son through the questions which I knew he knew the answers to. I was chastised by Dr. L. I was sufficiently embarrassed. Part of the test was my son’s choice to answer or not.
It turns out that the assessment last October, when he was 5 years and 4.5 months old
showed him to be operating at the age of a 2 year and 7 month old child, receptively.
Expressively, he was around a three year old. Clearly, delay. Worse yet, when I shared these results with our ABA provider, the assistant clinical director went back to my son’s initial assessment with them. When my son was 4 years and 1.5 months old,
he was assessed at the level of a 1 year and 11 month old.
These numbers are pretty scary.
My son is now 5 years 9.5 months old. Are you ready for this? His results showed him at 4 years and 7 months old receptively, and 6 years old expressively!
Do you see why I feel like Dr. Chez is our superhero?
Dr. Chez says that this rapid, huge change in a little over 4 months, happens in less than 10 percent of all cases. My son’s unique circumstances, his unique brand of autism, has been exceptionally responsive to this treatment. I knew that his language and his listening had increased and I was seeing progress. I just had no idea how much.
The repeat EEG that was done at the end of February, just a couple weeks ago showed NO abnormal activity on the left-side of the temporal lobe where it had been!
My son is NOT cured. He still has autism. We’re still in the ‘hood. Lots of echolalia, misuse of pronouns, need for proprioceptive input, yelling at times, self-talk, confusion about when to use the toilet… It goes on. But when he talks now, he makes so much more sense. He says or does something new every single day.
Yesterday, I was doing laundry and went to the other side of the house. He stayed in the bedroom. While I was loading clothes, I could hear him yelling, “Mom?” “MOMMY?!” and I yelled back that I was in the laundry room. He kept yelling “Mommy?” as he walked closer and closer. When he came in the laundry room, he looked at me, and said, “That was far, long to come, Mommy.”
In so many ways, kid. In so many ways.
I cannot emphasize the importance of checking your child for seizure activity. I’ve said it before and I’ll say it again. We had no idea my son had seizures. He showed absolutely no outward signs of a “seizure” in its classic sense. Dr. Chez’s book notes that over 60 percent of autistic children suffer seizures in their sleep. My son is part of this 60 percent.
Don’t just think about it! A 24 hour ambulatory EEG can make a world of difference to your child. Just because you don’t have that medical degree – DO NOT BE INTIMIDATED if the doctor says it’s not needed! We’re all warriors – demand it! It might make a world of difference to you too.