Fol­low­ing her posts on rec­og­niz­ing the sen­so­ry over­load of cel­e­brat­ing Purim and set­ting a place for spe­cial needs at the seder table, this week Liane Kupfer­berg Carter con­tin­ues her exclu­sive series on cel­e­brat­ing the Jew­ish hol­i­days in a fam­i­ly with spe­cial needs as a Vis­it­ing Scribe guest con­trib­u­tor on The ProsenPeo­ple.

Dur­ing the Fes­ti­val of Shavuot, which com­mem­o­rates the giv­ing of the Torah at Mount Sinai, Jews world­wide go to their local syn­a­gogues to hear the read­ing of the Ten Com­mand­ments. I fol­low the offi­cial set, but as the par­ent of a child with a dis­abil­i­ty I’ve also need­ed to devel­op my own set of direc­tives to make me the most effec­tive advo­cate I can be for my son. Here are my ten com­mand­ments for par­ent­ing a child with spe­cial needs: 

1. Thou art the biggest expert on thine own child. As Dr. Spock said more than 70 years ago, Trust your­self. You know more than you think you do.” No one loves or knows our child bet­ter than my hus­band and I do as his parents.

2. Thou shalt pre­sume com­pe­tence. My son Mick­ey is 23 and dis­abled, but we always assume he wants and is able to learn. We expose him to new expe­ri­ences when­ev­er we can. We nev­er stop try­ing to teach him. Pre­sum­ing com­pe­tence doesn’t mean we think he auto­mat­i­cal­ly gets every­thing, but we know he is tak­ing it all in, stor­ing it, and pro­cess­ing it on his own timetable — and that he will sur­prise us with entire­ly appro­pri­ate and insight­ful com­ments that clear­ly indi­cate he understands.

3. Thou shalt not talk about thy child in front of him. Adults every­where per­sist in doing it, and we’re some­times guilty of it, too. But we have also learned that even when Mick­ey doesn’t seem to be pay­ing atten­tion, he is. Eye con­tact is not a reli­able indi­ca­tor: you don’t hear with your eyes!

4. Thou shalt always remem­ber that behav­ior is com­mu­ni­ca­tion. With or with­out spo­ken lan­guage, every­one uses behav­ior to com­mu­ni­cate. When Mick­ey behaves in a way that chal­lenges us, I remind myself that he isn’t doing it to annoy us. He can’t always find the words to explain, but he’s telling us he feels unsafe, uncom­fort­able, scared, or over­whelmed. Babies cry when they are wet or hun­gry; adults yawn when they are bored, or shout when they’re upset. Mickey’s behav­ior com­mu­ni­cates frus­tra­tion or dis­com­fort; it’s our job to fig­ure out what he’s telling us.

5. Thou shalt not cov­et some­one else’s neu­rotyp­i­cal child. This one took me years. When I tuned out what typ­i­cal kids his age did, I was able to see how much progress Mick­ey was mak­ing. He delights us every day, and I don’t take any of his hard-won mile­stones for grant­ed. I want for Mick­ey the same things I want for his broth­er Jon: to live the most sat­is­fy­ing, inde­pen­dent lives they can, with lov­ing friends, good health, and work that is mean­ing­ful to them.

6. Thou shalt accept that ketchup may indeed be a veg­etable. Mick­ey has sen­so­ry issues. It’s hard for him to dis­tin­guish good fla­vors when he can’t get past dis­turb­ing tex­tures. Let­tuce repuls­es him; car­rots make him gag. Ketchup is my favorite veg­etable,” he will tell you, and it’s the only veg­etable” he’ll eat. He also can’t tol­er­ate crowds or loud music. He hates footwear of any kind. While I won’t let him go out wear­ing shorts in Jan­u­ary as he wants to, I’ve also learned that just because I’m cold doesn’t mean he has to put on a sweat­shirt. I respect that his sen­so­ry sys­tem isn’t mine. We’re wired dif­fer­ent­ly. I’m a PC; he’s a Mac. As the Inter­net meme says: Autism is not a pro­cess­ing error. It’s a dif­fer­ent oper­at­ing system.”

7. Hon­or thy fel­low autism par­ents. They are a life­line. Trea­sure them. They will val­i­date your feel­ings, and sup­port you when you are down. They are the ones who real­ly, tru­ly get it.

8. Thou shalt pay atten­tion to the needs of thy nondis­abled chil­dren. A child’s dis­abil­i­ty can take over the emo­tion­al life of the entire fam­i­ly. Your dis­abled child may require more of your time, but not more of your love. Make sure to give your oth­er chil­dren as much atten­tion as you pos­si­bly can.

9. Thou shalt keep thy sense of humor. Do I real­ly need to explain this one? Laugh­ter is rich and restora­tive. It fos­ters resilience. 

10. Thou shalt take care of thy­self. A study of cor­ti­sol lev­els pub­lished in the Jour­nal of Autism and Devel­op­men­tal Dis­or­ders in 2010 found that moth­ers of ado­les­cents and adults with autism expe­ri­ence chron­ic stress lev­els com­pa­ra­ble to that of com­bat sol­diers. I’m no good to my kids if I don’t stay healthy and strong. I’ve learned to ask for help when I need it. Because as all spe­cial needs par­ents know, we need to live forever.

Liane Kupfer­berg Carter is a nation­al­ly-known writer and advo­cate for the autism com­mu­ni­ty and a co-author of the Autism Speaks Advo­ca­cy Took Kit. She is cur­rent­ly tour­ing for the 20162017 sea­son on her mem­oir Ketchup Is My Favorite Veg­etable through the JBC Net­work.

Relat­ed Content:

Liane is a nation­al­ly-known writer and advo­cate for the autism com­mu­ni­ty. Her work has appeared in numer­ous pub­li­ca­tions, includ­ing The New York Times, the Chica­go Tri­bune, The Huff­in­g­ton Post, Tikkun, Kveller, and Par­ents Mag­a­zine. She is a co-author of the Autism Speaks Advo­ca­cy Took Kit.