First My Brother, Now My Son

Finding lessons within lessons

Sometime in 1987, my family was robbed. We were robbed of the opportunity to hear my baby brother’s voice and to hear his thoughts.

At 18 months, he was beginning to speak in full sentences, had great eye contact and interacted with others very well, until the day that he couldn’t. He stopped communicating altogether and his daily contact with the world was wrapped in a series of occasional hugs, gestures and pointing to what he wants or needs.

Specialists diagnosed him with the double dose of autism and mental retardation. It was a devastating blow to our family. We were never able to hear him express himself through words ever again. My mother, who was once highly active in neighborhood activities, began a slow retreat of her own. She didn’t hang out with neighbors nearly as much as she used to. A little bit of my mom died around that period and it is a piece I think that nobody has ever been able to revive.

Fast forward to today. My baby brother is a 28 –year-old adult who has been clinically diagnosed to have the mind of a toddler. He was unable to pick up extensive sign language. His world is restricted to the confines of close family, family friends, and the familiarity of our family home and neighborhood. It was as though he went on a trip, lost his way and never came home.

My baby brother influenced several things in my life. I often attended my little brother’s yearly special education program meetings conducted by the local school district and read through his individualized education plans (IEPs).

He still lives with my parents. My baby brother’s future care is always in the back of my head and that is something I made sure my spouse knew about when we were dating. When we were getting serious, I told my husband that my baby brother and I were a packaged deal and what his long-term care needs would likely consist of. He understood then and, thank goodness, still understands now.

I never knew that caring for my baby brother growing up, and the challenges associated with it, would give me the unique perspective needed to observe what I would later see in my own son.

It began with a look. I was bathing him one evening and, as I was drying him off, he looked off in the distance and it hit me like a lightning rod. It reminded me so much of my baby brother’s look off into the distance when he was much younger. I made a mental note and kind of put it to the back of my head. He was talkative after all. At age 2, he could count to 30, could count to 10 in Spanish and could label colors and shapes with ease. He was the little social butterfly of his daycare at the time, so I made a mental note and pushed it to the back of my head…until it happened again.

I was pregnant with our second child and the pregnancy was rough. I thought that this newly observed behavior, where he appeared to be more and more distant with me, was due to the pregnancy.

I was reassured by family and his pre-school that such regression was typical due to the impending arrival of our baby girl. So, I continued going to work and preparing for my second child.

In August of last year, we moved out of state so that my husband could pursue graduate studies. The plan was to find work on the university campus, have a much shorter commute and have more time to focus on my kids, then 2 years old and 6 months, respectively.

But, it was our move to Wisconsin that had my son’s behavior go from questionable to one of great concern. Words and phrases he used to say on the regular basis suddenly disappeared. My husband and I received stares where responses used to be commonplace. On a ride home from the store one late summer afternoon, my child asked me the same question seventeen times from his back car seat as though his brain were on auto-pilot.

At his new daycare, he would take his toys and separate himself from the rest of the children. He became more and more interested in concrete concepts such as colors and numbers and less with socialization. He showed very little interest in engaging in dialogue with others. I told our son’s pediatrician that I had concerns about autism. We were referred to the Waisman Center, a nationally recognized center within the city health system that focused on developmental delays. I alerted our Wisconsin’s early intervention services and within three weeks he was evaluated and given a speech therapist that came to the house once a week.

Some of his vocabulary came back over the next 4 weeks. But, because of my baby brother, I was very very aware that the clock was ticking. He was within 3 months of his third birthday and I had done enough research on my brother to know that behavioral therapy is more effective the younger the subject is.

I was told that my son would likely be on the waiting list for 6 months before he could be diagnosed. I couldn’t just sit around and wait an entire six months, so I went to the Waisman Center and was paired with a social worker whose job was to explain to me what my next steps should be. I told her of my strong concerns that my son needed to be diagnosed so that he could qualify for the services I thought he needed.

In that moment, everything hit me all at once. The regression of my son, the lack of sleep from tending to an infant and the fear that history was repeating itself all met at the intersection of my heart and I just started crying right there. In the middle of telling my story to a social worker there, I simply lost it.

I cried. And cried. And cried. And this kind woman just sat there calmly and explained that although their medical center had a long waiting list, it was possible for him to be evaluated through a private autism service provider. I called the number and they happened to have an opening two weeks later.

Two weeks went by quickly and after a three-hour evaluation, a psychologist and a social worker took us through the test, explained where our son had challenges and told us that he indeed has autism spectrum disorder. November 8, 2013 was our confirmation and my déjà vu moment. I heard the psychologist say phrases and sentences like, “ there is nothing you or your husband did wrong” and “ there is nothing you could have done to prevent this”. This is what I heard said to my parents over the years.

I could see my parents, particularly my mom, grapple with that at the time. My mother would sometimes confide in me and say, “ I don’t know what I did wrong. I didn’t drink or smoke or do any drugs. I did the same thing with him that I did with you and your other brothers.”

As my little boy was running around playing with all the toys in the room, I kept seeing my baby brother. When the psychologist said, “We believe that he can respond well to this because he is such a great kid and will be a lot of fun to work with.”

Cue in the waterworks…again. I broke down again in front of my child’s psychologist, my husband, the social worker in the room and my child.

Being the professionals that they are, they walked over to me with a box of Kleenex and let me know that I was taking it well and it was a lot to process.

It sure was. It’s one thing to suspect, but when you get that confirmation, you go from suspicion to knowledge. You know now. So, what happens next?

Well, thank goodness, autism research has grown leaps and bounds since the late 80’s when my brother was diagnosed. We now know that applied behavioral therapy is a highly useful tool in helping people on the spectrum better communicate and interact with the world around them.

Within eight weeks of being diagnosed, our insurance approved my son’s in-home 30 hour, six day a week intensive applied behavioral therapy program. Our old insurance back in Illinois would not have provided such services at the price point or with the frequency that our new insurance did. He is receiving these services in addition to special education classes provided by the local public school district 2 days a week.

Without my baby brother, my son’s autism spectrum disorder would not have been caught this early. Period. My brother saved my son and he doesn’t even know it. Thanks Uncle.