Guest Post: Don't Fight It

Don’t Fight It  by Rick Schostek

Experts say that there wasn’t a lot of good music created in the 1980s. But I’ve found that two songs from that decade provide good advice for raising a child with autism: Steve Winwood’s “Roll With It” and Kenny Loggins’ “Don’t Fight It.”

Our son Greg was born in 1987 and diagnosed with autism in 1990 at age 2 ½. Upon receiving the diagnosis, we went into a frenzy. The internet wasn’t much back then, so we used “old school” methods like going to the library, making phone calls and joining a support group. We were willing to try almost anything. We had many consults with speech therapists, psychologists and other professionals. We gave Greg a vitamin B-12 supplement. We tried a tactile stimulation of brushing his skin. We got him additional speech therapy outside of the school setting for about five years. We tried to find medications to improve some of the behaviors that hindered his development. By the age of ten, his behavior moderated, and we stopped searching for treatments, relying instead on the public school system, summer camps, caregivers, and our own efforts to help maximize his capability.

The years went by and Greg progressed, often with two steps forward and one back. Now he’s 24, holds a part-time job, attends an adult day services program, and is doing just fine. His transition to adulthood and the working world was the impetus for me to write a book entitled What Happens Next?.

As I gathered my thoughts for the book, I felt compelled to write down a handful of opinions I’d formed after 20+ years of living with a person with autism. Here’s one of them:

I’m really uncomfortable with the notion that we’re fighting autism. We may be fighting to find the cause and cure, but not the condition itself. It’s common to hear that someone fought a battle with cancer or another disease. But autism isn’t a disease. It’s organic. It’s part of who Greg is. We haven’t fought autism all these years. We’ve adapted to it. In turn, we’ve helped Greg adapt to the confusing world he lives in.

Autism awareness is at an all-time high. Research is progressing. We have good momentum. We must continue to push for early diagnosis and early intervention. Yet, I can’t help but think that we’ve got a blind spot: adults with ASD. To be sure, there are people who are actively working on transition and adult services. There are also some organizations focused on this issue. Even so, I don’t feel that there is enough intensity to address the issue of services for adults with ASD.

As our country recovers from the recession, federal, state and local governments face very tough times. Special education, adult services and Medicaid might not be immune from the budget ax. This is a recipe for big trouble – a growing population that needs to receive services from a shrinking resource pool. It’s time for the autism community to join with a wide range of professionals to shed some light on the topic of adult services. Autism is, after all, a lifelong neurological disorder.

You can learn more about Greg and our family’s journey through stories and experiences like these in the book What Happens Next? Raising a Son with Autism: A Father’s Story and on www.whathappensnextbook.com

Rick Schostek

Spring Is In The Air...Among Other Things

We've coasted through a mild winter and landed firmly in the grasp of a very warm spring. I know this because the orange road construction cones are in full bloom and all the cars in town have turned yellow from pollen. To add to this brilliant explosion of color, I have begun wearing shorts again. I find that the shocking white of my pale skin offers a nice contrast to the more palatable colors of spring. (Don't worry, the blindness you may experience is only temporary.)

My house now bustles with the familiar sounds of springtime. The steady hum of my son's nebulizer drones on as excited conversations are punctuated with sneezes. Occasionally, one might hear the sound of a buzzing wasp that has somehow flitted it's way inside. This cheerful little buzz is quickly drowned out by the muttered expletives of a mother on a mission to annihilate the aforementioned critter.

Ah, spring! What a glorious time of year!

The Doctor is IN!

Autism Awareness Month is right around the corner and I'm feeling the pressure. My work, volunteer duties, and mommy responsibilities all focus on autism and it seems like I'm getting hit from all sides. April may be the month of awareness, but March is the month of preparation!

To complicate matters, my son has recently suffered a severe regression. I have a few theories as to why this has happened and none of them are easy to fix. One of the biggest culprits has been his diet. We slowly strayed away from GFCF and somehow wound up in junk food land. So, now I'm back in the kitchen...whipping up everything from scratch again. It is obvious that I am seriously out of practice. Just this morning I managed to ruin a loaf of gluten-free bread and a dozen mini doughnuts. Guess it will take a while to get my culinary groove back.

I've done a major overhaul on his supplements and started him on a few new ones this weekend. It's too early to say if anything is working yet. But with cautious optimism, I will tell you that today sucked slightly less than most days.

In my 5 years in autism land, I never expected to see a regression of this magnitude again. Honestly, it is as bad (if not worse) than the initial regression. It is truly heartbreaking. My little boy has disappeared again, sucked into that mysterious autism abyss.

I have as much determination as I did the first time, but I have to admit I'm more tired and frustrated now than I was then. The long hours of cooking and research seem to wear me down faster than I remember. Of course, trying not to lose my shit every time he has a meltdown also takes significant effort.

Dr. Mom is reporting for duty once again. In between consultations with Dr. Google, you can find me doing my mad scientist impersonation in the kitchen. One way or another, I'm going to get my son back.

If your child suffered a secondary regression years after his or her initial diagnosis, please let me know. I'd appreciate learning about the cause(s) and any interventions that you found helpful.