Sunday, September 14, 2014


When Alex was first diagnosed with autism, I desperately began searching for information to help him. Along with reading countless articles and books, I spent a great deal of time online, trying to find the most up-to-date research. In addition, I wanted to communicate with other parents who were dealing with the same things we were, hoping that we could share ideas. Thanks to the Internet, people can easily find all kinds of support groups that allow them to connect with others who share their concerns and interests. The first group I joined online was a fairly large autism group with members from all around the world. While I met some very nice and supportive parents in that group, a great deal of arguing and differences of opinion, sometimes known as “flame wars,” led a group of us to break away and start another group.

The second group was specifically for parents of children with hyperlexia, a relatively rare condition where children learn to read before the age of five or six. Most of our kids had begun reading at age three, and many of us used those reading skills to help our children with their speech delays. In addition, most of our kids were younger than those whose parents were in the autism group, so we were dealing with similar developmental issues. From that group, I bonded with a few special moms, and I still keep in contact with them and have always been grateful for their friendship, support, and empathy.

After a few years, a small group from the hyperlexia group formed another sub-group of parents who were doing biomedical interventions with our kids. As we put our kids on gluten-free and casein-free diets to address their food allergies and sensitivities, along with vitamins and nutritional supplements, we wanted to compare notes and share research. Not all parents want to pursue biomedical methods, and we respected those who had chosen not to use those approaches with their kids, taking our conversations elsewhere. I learned a great deal from both groups and appreciated the camaraderie that these smart and dedicated moms offered.

As Alex grew older, I was busier working with him and coordinating his therapies, which meant I had less time for the online support groups. For a while, I “lurked,” reading other people’s comments but rarely commenting myself, and eventually I simply no longer participated at all. Over time, most of us stopped chatting with each other online, busy with our kids and more confident in our abilities to parent these special kids without the support of others who were in the same boat.

Recently, I noticed an email with a familiar designation in my inbox and was surprised yet pleased to hear from one of the members of our small biomedical group. This group had probably not been active for more than five years, and she was curious as to how everyone was doing. Over the next few days, nearly everyone in the group responded with updates about how they and their kids—actually teenagers and young adults since so much time has passed—are doing. Some posted current pictures: their cute little boys I remembered from years ago have now matured into tall and handsome young men. As much as their sons had changed, these moms with their distinct voices had not changed much at all, and the familiarity of their personalities was comforting as I remembered many of our conversations from the past and how we had seen each other through those early, uncertain years.

Over the next several days, my inbox continued to fill with emails from this group, and I found myself feeling overwhelmed by the conversations. Perhaps I should explain that I’m not the type of person who goes to high school reunions. For those who enjoy reminiscing, I think that’s great, but I personally have no desire to bond with acquaintances from many years ago because life has taken me far from those past experiences. One of the topics the group discussed this week as I lurked was the question of  “What would you tell your younger self?” For some, this evoked wistfulness in choices they wish they had made; for others, this gave them a sense of wisdom from what they’ve learned from experience. While I didn’t respond, I suppose that I would have to say that I wouldn’t tell my younger self anything because I believe that everything we go through teaches us something we must learn. Perhaps I would share with my younger self the wise quote that Alex often tells me: “Wait and see.”

While a few of the online support group seem to be continuing their catching up on news and reminiscing, some of us are standing on the fringes, waiting until the reunion is over or until it’s polite to leave. Others have already left, explaining the obligations that keep them from staying any longer. In a few weeks, probably all of us will lose touch once again, maybe to be reunited a few years down the line when someone feels nostalgic and wonders how everyone is doing.

As I have mentioned in a previous blog entry, Alex still says his childhood prayer of “Now I lay me down to sleep,” followed by a list of people whom he asks God to bless every night. This list has increased over time as people who are important to him have entered his life, such as his beloved therapists. About a week ago, out of the blue, he added three names at the end of his “God bless” list. Although I recognized these boys’ names from many years ago, I asked Alex who they were. He smiled and told me that they were in his preschool class. I’m not sure why he suddenly decided to include these three boys, who are now young men, in his prayers, but I’m touched by the sweetness of the gesture. This was not a one-time addition, either, as Alex has continued to name them every night in his blessings list. When I asked Alex how old those three boys are now, he immediately answered, “Twenty-two,” knowing that they are the same age as he is. I wonder how those boys are doing, what they look like as young men, and what a reunion of that special needs preschool class would be like. Mostly, I hope they feel the prayers of their former classmate Alex, who still feels connected to them, even after seventeen years. God bless Alan, David, and Joshua, and God bless Alex, who prays for them all.

“Yet the time will come when the Lord will gather them together like handpicked grain. One by one he will gather them…” Isaiah 27:12

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