I originally intended to write a relatively short piece about how proud we are as a paper to participate in National Jewish Disability Awareness and Inclusion Month (JDAIM) this February. We are also proud to make this week’s issue of the paper our Special Needs edition (starting on page 41) and doubly proud to feature articles and content related to these areas. In truth, highlighting our unique individuals, families and organizations in this area has long been a focus for our paper and we have no intention of ceasing these efforts.
It also give me great pride to feature on our cover a wonderful original article by our Associate Editor Phil Jacobs about our local Sinai Schools and its upcoming 30th Anniversary celebration. (See our editorial above about supporting Sinai Schools on February 28th – I view it as a must-attend or must-give-to event for our entire coverage area and readership, and I hope you do as well.)
The Sinai honorees include a number of people I know well and/or think really highly of – as well as a JLNJ contributor or two. This is a special group of people and supporters who share a unique bond with Sinai Schools. I feel strongly that Sinai has assembled one of the best groups of honorees I have seen in recent years and I am looking forward to participating.
However, I feel its also important to go a bit further and shed some more light on my connection to the arena of special needs and developmental disabilities. As my friends know, I have long and strong ties to this world and community. Having grown up with a brother with Down Syndrome, with parents involved heavily in Yachad and Otsar and other good organizations, and having worked for Ohel – Bais Ezra earlier in my career and as a HASC counselor, I sometimes like to feel as if I know much of what there is to know about special needs and the opportunities available within the broader Jewish community.
I am wrong, of course. I don’t know everything.
As it happens, its in my latest role as the father of a generally happy, smiley, Jewish music-loving 14-year-old autistic son that I learn this lesson over and over again. This past Shabbos, our son started throwing up for no apparent reason, was listless, could barely walk, and was not eating. Frantic with worry, we thought about taking him to the emergency room and just doing “something” to help us figure out what was going on. Of course, our son isn’t the first teen to suffer symptoms like this but what made it harder was the fact that our son was not telling us what was bothering him. He can’t.
Our son has never told us if he has a headache or a stomachache. He has never once told us that he is feeling sick or that something plainly hurts him. That’s who he is, unable to clearly communicate these critical notions to us and we are always left guessing and unsure. To figure out how he is doing, we must look at him carefully, scan his face for signs of pain and fatigue, see how he is eating or not eating, and look at how he walks or is holding himself to see if he is in pain or discomfort. Even then, we still aren’t sure.
Thankfully, this time, his temporary symptoms dissipated after a good night’s sleep and we mostly forgot about it but the incident served as yet another sharp reminder how much we parents don’t know about our son…and how much there is to learn and know for everyone raising, caring for, educating, and treating the special needs population in our midst.
With that in mind, I would like to end with a strong plug and push for this Sunday’s 2nd Annual NNJ Jewish Disability Awareness and Inclusion Conference entitled “The Bigger Picture” at our local Kaplen JCC on the Palisades starting at 8:30AM. (See full page ad on 42 for more details.) I attended the inaugural conference last year (and JLNJ covered it on our front page also) and enjoyed the sessions and workshops I attended and I hope you will also. There is so much for all involved in this arena to learn and know about. The keynote speaker will be the assistant commissioner of NJ’s Division of Human Services Elizabeth Shea and I feel its always helpful for parents and those in the field to hear what this critical state agency is planning and working towards. Of course, there will be a variety of sessions on financial planning, special needs trusts, Medicaid and SSI, adult sibling support groups, and so forth.
Fundamentally, the goal of the conference is to help all of us in this arena learn and know more and be better equipped to handle the many additional challenges that come with the territory. As mentioned earlier, parents are always learning new things about our special children and that we don’t know everything, even if we think we know a lot. We certainly don’t.
By Moshe Kinderlehrer
JLNJ Co-Publisher & Founder
