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

Posted on Thursday, October 04, 2018 by Rachel Kest

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 6th 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 6th 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.

Wexner Graduate Fellowship Alum Rachel Kest (Class 11) began working as the Director of the Jewish Education and Engagement department at the Jewish Federation of Greater Rochester NY in 2013. Prior to moving to Western New York, Rachel worked briefly in Vancouver, BC at the Federation and before that was the Director of Elementary and Family Education for 11 years at Temple Shir Tikva in Wayland, Massachusetts, a suburb of Boston. Rachel has a particular interest in the area of disability inclusion — both within the Jewish and general communities — working to change the culture of institutions so that they view inclusion as a mindset, rather than an accommodation, making our world a better, more inclusive place for all.

Comments

Rachel



Thank you for reminding all of us of the breadth of circumstances parents can find themselves in and helping sensitize us on how to be part of the support network of our fellow parents. Perhaps "it takes a village" is more apropos than "set it and forget it" in this circumstance.


Posted on Monday, October 08, 2018 at 8:03 AM by Caron Blau Rothstein

As the mother and stepmother of two who are neurodivergent, I grapple with so many extra challenges each day.  One of the challenges includes whether or not to take on these extras or just hope for the best in every encounter.  I am blessed that my daughter was accepted into the Pre-K of JCDS of RI.   My stepson has benefited from the caring staff at Camp Chi in Chicago and Camp Shalom in Madison.  I wish that instead of listing the few and far between Jewish organizations that are doing a good job, that they became the norm.


Posted on Friday, October 05, 2018 at 5:55 PM by Rachel Levy

Thanks for sharing some of your experience, Rachel, and inviting us to stop and think (not set it and forget it) about how we can include those who experience the world in ways that are different from our own. 


Posted on Thursday, October 04, 2018 at 2:46 PM by Karen Elam

Beautifully stated, Rachel. Thank you.


Posted on Thursday, October 04, 2018 at 12:55 PM by Robin Axelrod