When speaking, I talk about how Alex was developing normally until the age of three. The fact that he was counting in three languages, and was able to say on 9/11 "turns the TV off, that's scary". Without fail I am asked, so what happened to Alex?
Before Alex's regression , he was developing typically, if not at an advanced rate. Always a favorite with caregivers at Chesterbrook Academy in Virginia, Alex often helped the staff with other kids and had little jobs to do. I remember the women who worked there saying how Alex was the perfect man, as he loved to clean up, cook (with plastic toys) and dance. I also remember specific conversations, how he would tell my friend his favorite team was the Yankees. How he would call his pop-pop "my friend". How he would ask to speak to Grandma on the phone. One time, at a restaurant with my parents, the waiter brought over the dessert tray and described all before repairing to the kitchen. Alex did a double take saying "that guy took the cupcakes away!"
Between the ages of 1 and 2 Alex had frequent ear infections that were often treated with inhaled albuterol so often, we even had our own nebulizer. Unbeknownst to me at the time, most of these ear infections were likely viral and we were just wasting drug as that is the safe course for physicians, or was at that time. So the young Alex was being loaded up with antibiotics, many likely unnecessary, while his immune system was still developing. Along this time, Alex also received his necessary 36 vaccinations, into his developing immune system. Following his 3 rd birthday, Alex had yet another round of vaccinations, shortly thereafter becoming ill and then spiraling downwards into what is called autism. An additional emotional component was his mom and I splitting up and eventually divorcing (in a friendly manner) shortly before the regression. We'll never know, but I believe a combination of stresses, both emotional and antibacterial, combined with the vaccine straw to lead to Alex's regression.
Initially docs told us Alex was going through a phase, no big deal. It was a big deal. Over the next 3 months Alex lost all speech, began to spend most of the day spinning, not sleeping and having terribly violent tantrums.
Before autism, Alex's mom and I had joint custody, with Alex primarily in Virginia, myself in NYC. On weekends I would have Alex in town or at my parents in NJ. Many, many hours were spent driving up and down 95. How many, tough to say. But I did listen to several books per month on disc, and late night station attendants knew our names.
At this time, I was a well-paid Wall Street analyst for a large institutional money manger. Life was filled with social/work outings, travels and the so-called "good life". So during the week, man about town Wall Streeter, on weekends, autism dad on the road.
Following the regression, Alex was seen by doctors up and down the east coast. After about six months of hospital visits, doctor visits, and psychologist visits, John Hopkins finally confirmed autism. This was 2002. They (Hopkins) said you'll need to think about institutionalization. Yes, the experts were saying Alex was done. At three.
Initially, while ramping up on what exactly was "autism" (still working on that) Alex was placed on various meds (for his own good). These included, for various lengths of time, Clonodine, Concerta, Ritalin, Wellbutrin, Adderall and finally Risperidone/Risperdal. Risperidone at the time was the only med "approved" for autism. Aripiprazole has now been added. Alex's docs to a person choose risperidone dead last, wanting to work through all other possibilities first. I always found that interesting, the only approved med by the FDA is treated as a last resort. Think about that (we'll discuss another time).
While Alex was being introduced to the world of psychotic medications, dad was learning about the 405 club. $405 being the amount of money paid by unemployment in NYC. I also learned about such things as "contract work", "eat what you kill" and other schemes by so called boutique investment banks and money managers to get you to work for little or nothing. On the plus side I did acquire a solid skill of pricing items on Craig's List to help meet various bills each month.
Nowadays things are much better. In fact reading what I have written, I almost feel like another person went through all that. But no, it was Alex and I. So 12 years after diagnosis, Alex is yes, still with autism. But he is so much better. We found Alex has/had massive GI issues, which over time became ulcerative colitis (UC) (see blurb below on increasing incidence of GI disease). Now with UC being treated, Alex's "autism" is so much better. I doubt we'd even know about the colitis if he were still on risperidone.
Alex also moved to NYC with me full time in 2008 when I took full custody of him (yes during the market crash and another stint in club 405). My life, changed. For the better. No more out and about. No more travel. No more so-called "good life". I am not going to tell you it was easy. It was tough. And I cannot tell you how this will end, but I can tell you now, things are good, and getting better. "Good-life" is now "meaningful life".
And Alex, now with UC in remission, is beginning to improve his communication including approximations of words, (I did hear Dad again), improved behaviors, and sleep. I have to drag him outta bed. Alex is now even running with dad in the park four times per week.
I have hopefully helped Alex learn he can improve and do things he once feared or only dreamed of. Alex has taught me what is important.
Alex is no longer on the "meds", his colitis is under control, and he is learning. How far will he go/recover/improve I do not know. But we'll keep working at it, breathing through the difficult days, smiling through the easy days and growing hope for the future.
Next Time: The Superman Formula
NEW – MASSIVE INCREASE IN PEDIATRIC GI DEMAND
The new study, published online and scheduled for the August 2013 print issue of the Journal of Investigative Medicine , found a 65 percent increase in IBD hospital discharges from 2000 to 2009. The number increased from 11,928 discharges in 2000 to 19,568 discharges in 2009.
The largest investigation to date has found a dramatic increase in the number of hospitalizations for children with inflammatory bowel disease (IBD) during the past decade in the United States.
THIS COINCIDES WITH NEED FOR SPEECH THERAPISTS, I CHECKED WITH NYC, THEY CANNOT HIRE ENOUGH. SO BETTER DIAGNOSIS IS NOT THE REASON FOR THE INCREASE, UNLESS EVALUATORS FORGOT TO ASK KIDS TO SPEAK DURING TESTING. Ken.
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