A New Year and a New Opportunity to Consider Our Kids on the Autism Spectrum

Just Set it and Forget it

Remember the days before DVR or streaming, when you used to actually watch infomercials that were on late at night or Sunday morning because there was nothing else to watch? Who doesn’t remember the king of the infomercial Ron Popeil and his rotisserie chicken machine? He had this mantra that both he and his studio audience repeated over and over and over — just set it and forget it — showcasing just how easy it is to make a rotisserie chicken in the comfort of your own home.

I’ve been thinking a lot about this saying — just set it and forget it — particularly within the context of parenting. When one embarks on this crazy parenting journey, you imagine, or at least hope, that raising kids will be as easy as cooking a rotisserie chicken. While no one gets off quite this easily, some in fact do have it easier than others. As a mom of two boys on the autism spectrum, nothing on my parenting journey has ever fallen under the category of just set it and forget it; and, now that my older son is a tween, it feels more poignant than ever. All situations in our lives from getting a haircut, to trying a new food, to visiting a grandparent, to having a different schedule for one day, require a lot of preparation and then equal amounts of follow-up, both internally with my kids and externally with the outside world.

For instance, each season when I register my son for little league baseball just like all of the other parents, I complete paperwork and pay the fee. However, in order to ensure that my son has any chance of having a successful (for him) and happy baseball season, I must take several other steps that most parents don’t ever have to think about, let alone actually take.

I first place a call to one of the volunteers in charge of baseball to inform them that my son has autism and that he operates differently in the world than the other players on the team. With this call I hope to ensure that he is placed on a team with an understanding and empathic coach. Once he is assigned to a team, I then reach out to his coach to give him a one-on-one “lesson” in working with my son, sharing that he has a true love of baseball, but has physical limitations which inhibit his ability to run, as well as having serious deficits in reading the social cues of his peers. These “private lessons” sometimes make a difference, but often times do not. While these steps can be perceived as “helicopter parenting,” they are absolutely necessary in ensuring that my son has any chance of success in any situation in which he participates.

Even those with the most knowledge of special needs, and with the best of intentions, don’t always get these small, but critical steps right.  Most recently, the school district arranged a purely social “fun night” for incoming 6^th graders to help ease the transition to middle school. In theory, having a low barrier party for incoming students is a great concept — that is if you already have friends, enjoy loud settings with lots of people, and do well in new and unknown situations. The purpose of this party was to be welcoming, but these types of programs don’t work for all. Should my son miss out on programs because of his deficits or should the school try to provide more inclusive programs or different options for students at a minimum so that all incoming 6^th graders feel truly welcomed to their new environment?

I am sure that there was no ill intent on the part of the school, just a lack of truly thinking through how things could be done rather than how they have always been done. The school, just like baseball and most other academic, recreational and social situations, seem to religiously follow the words of Ron Popeil — “just set and forget it," assuming that one size fits all. And I understand the financial constraints and challenges that Jewish Day Schools face, but for us, unfortunately, there was no way our local Jewish Day School could accommodate our needs either. Nothing in life, nothing in our leadership journeys, is truly so simple (not even cooking a rotisserie chicken). While life may be simpler for some than for others, allowing oneself to truly embrace and recognize the differences among us, will surely help to make our world and our Jewish communities a better, more inclusive place for all.