Family and Friends
Fred and I had settled quite a distance away from family due to work. We both held Masters of Arts degrees in Finance and the towns of two to six thousand people where we had grown up, obviously, were quite limited as far as any career advancement in our field. So, we lived in the suburbs of Chicago. With such a “difficult child”, work and family were all we could handle. We had plenty of people we considered acquaintances, but true friends were not something we had much time for.
My babysitter, Jennifer, was probably the person I spoke to the most. Fred had one friend, Kevin, whom he used to do things with once in a while. Kevin was the father of three and truly a good person. He worked like a dog to support his family and when he was not doing that, he was off to the Army Reserve on weekends. So, even though Fred got along with him quite well, we really did not see much of Kevin simply due to his schedule. Fred and I had pretty well been each other’s best friend ever since we had begun to date back in 1983 and married in 1984. Friends, in the usual meaning of the word, were not something either of us missed. Jennifer though truly cared for our children. She had been a wonderful babysitter.
What I admired most about Jennifer, however, was the fact that she was among the first to even begin to suggest to us that there may have been something wrong with Zachary. She, too, felt he had not been developing as quickly as he should have verbally. It was she who actually suggested I have Zachary’s hearing tested. Of course, I knew he could hear well. I had done those little tests parents do, snapping fingers behind the ear to see if there was a reaction, etc. Still, Jennifer along with my sister-in-law, Christine, did put the “bug in our ear” that something was not be right. The week after our trip to Canada in February, just before we quit, Jennifer mentioned to me that she had herself expressed concerns over Zachary to a pediatrician she knew. The pediatrician had seen Zachary while she was on an outing/errand. As Jennifer told me about this encounter, she calmly stated that this pediatrician she knew thought Zachary might have exhibited very mild signs of autism. Looking back, that just made me all the more suspicious about my own pediatrician. How could this man have seen what Zachary’s own doctor had “missed” time after time after time? When Jennifer made that comment to me, I did not take her seriously enough though. Zachary was not autistic. He was just a little slower, that was all...just as his doctor had said.
While we had been in Canada just five days or so prior to this conversation with Jennifer, my sister-in-law, Christine, basically told my husband she thought Zachary had some of the signs her own son, now 11, had shown. Andrew had been diagnosed with Pervasive Developmental Disorder (PDD) when he was around eight. PDD was, in Christine’s words, along the same spectrum as autism. Fred had not mentioned Christine’s conversation to me until March 22nd.
It was because of these two conversations, the one with Jennifer, and shortly later, the one with Christine, that I set out to “prove they were wrong”, but, unfortunately, they were right and less than a month later a new pediatrician would confirm that.
With the confirmed diagnosis came calls to family members we felt should know of Zachary’s condition - the grandparents, the aunts and uncles…those people you would call if someone died…and that was just how we felt, we had lived through the death of the son we thought we had and awakened one morning to a very sick child.
Although they meant well, some family members did not seem to accept the diagnosis very well. After all, some books stated that up to 75% of autistic children were mentally retarded and Zachary did seem intelligent enough. Some of it may have been pride, not wanting to believe that one of our family members could possibly have this disorder, or it may simply have been disbelief, denial, or simply the inability to cope with the diagnosis. I just know that we heard a lot of “I do not think he’s autistic” from family members who would later “try to see the problem” when Zachary was around. But, then again, this was a disorder whose signs and symptoms were so easily missed or dismissed. We had not seen them for so long. So, it did not surprise me to see they too had difficulty with the diagnosis. Others simply did not want to talk about it, not knowing what to say, they preferred not to say anything.
What did surprise me, however, was the fact that others still had a very different reaction. A couple of them admitted they “suspected” something was wrong with Zachary, yet had never mentioned anything. This was, to me, quite troubling. Upon hearing of Zachary’s diagnosis, another family member said: “I knew there was something wrong with that kid!” That hurt. Why had this person not said something? Why had they not approached us with their concerns or suspicions? Not only did I feel betrayed by the medical community, I now felt betrayed by members of my own family. I felt surely I would have said something to them had the situation been reversed. I guess you could not take anything for granted, not even from family. I understood that they did not want to hurt us and probably thought we would see it “in time”. What pained me was the fact that for these children, time was of the essence…we only had one chance! I knew Fred and I had missed it for a long time too. Too often, being in the eye of the storm, we failed to see what was all about us. Just getting through the whirlwind of each day was so difficult that we never took that “critical step back” to make sense of the tornado we knew to be our daily lives. None of that mattered now. I felt no bad feelings toward anyone – I had to move on, to once again, focus on Zachary.
I certainly hope my story will help friends and family to talk more openly, to understand that what may be obvious to someone “away from the situation” may not be to the person in the middle of the hurricane and that courage to discuss the issue was perhaps the greatest expression of love you could give to someone dealing with what may appear to be autism or a similar disorder.