When your child first receives a special needs diagnosis, it is natural to feel like your life has been turned upside down, and that you have entered a strange, unknown place I like to call Special Needs Land. In my imagination, when you first enter this land, all you can see are narrow U-turns, dangerous drops, and overhead, ominous grey clouds, raining down droplets filled with words like “can’t “ and “won’t”.
Even though 15-20% of all children have some type of special need/disability, it is all too easy to feel alone and in a negative frame of mind, especially living in a Jewish community filled with people who pride themselves on intellectual rigor and academic success. But although this isn’t the place you ever planned to find yourself, or your family traveling in, it turns out there are many silver linings in the clouds above.
#1 You will meet some absolutely terrific families in a similar situation. Meet them in the waiting room for occupational therapy, at the special needs school or even in the disability line at Disneyland. Get involved with The Friendship Circle closest to your home, Vista Del Mar’s Vista Inspired Program or a synagogue near you that offers special needs/inclusive programming and you will soon meet other parents who really “get it” and with whom you can compare notes, laugh, and cry.
#2 You will learn more about flexibility and creativity than you ever thought possible. Whether it is turning a trip to the grocery store into a chance to practice the consonant endings of words for speech therapy or finding new and exciting nuances in the 100th viewing of Mary Poppins (hint: try watching it in Spanish or French to mix it up).
#3 Other problems will seem small in comparison. When dealing with a major life challenge such as having a child on the Autism Spectrum Disorder, you probably won’t scream so much if some milk spills on the carpet, or if the 405 is completely jammed up again. When you are sweating the big stuff, everything else is no big deal.
#4 More empathy for the differences of others. After a few years of watching your own child work so hard for what may come almost automatically for other kids, you will inevitably be more open and less judgmental of all the people you meet. You will be able to recognize the inner spark of humanity that resides in each of us, even if it can be hard to see at first glance.
#5 No more measuring up to others. You learn quickly that your child with special needs will make progress at his/her unique pace, and it’s ridiculous to try to compare that to anyone else. Some skills and abilities will come quickly, and sometimes there are two or three steps backwards or even sideward. Milestones won’t happen in the chronological order laid out in parenting books. As the saying goes, “its all good.”
#6 Kindness trumps intelligence. As the Jimmy Stewart character says in the classic movie “Harvey” (with his invisible 6feet tall rabbit as his best friend), “Years ago, my mother used to say to me, she'd say "In this world, Elwood, you can be oh so smart, or oh so pleasant." Well, for years I was smart... I recommend pleasant. You may quote me.”
#7 You will discover strengths you didn’t know you had, like learning how to effectively advocate for your child at school, with professionals in medical offices, even with strangers. Even if you are essentially a shy person, you will soon realize that if you don’t speak up for your child, who will? If you are disorganized, you may learn how to keep all the paperwork up to date and find clever ways to organize and coordinate all the details that fill up Special Needs Land. Above all, you will learn how to be true to yourself in a way you never thought possible.
Michelle K. Wolf is parent disability advocate, non-profit professional and program innovator. She is the Transitions Coordinator for Bet Tzedek Legal Services in Los Angeles and also the grantwriter for Golden Heart Ranch. She was formerly the Director of Serving the Vulnerable for The Jewish Federation of Greater Los Angeles, and in 2005, she co-founded HaMercaz an innovative multi-agency collaborative one-stop model that helps Jewish families raising children with special needs with a focus on developmental disabilities. As a parent of a teen with cerebral palsy, she blogs weekly on topics related to special needs at the Jewish Journal and also has a monthly column on human services issues in the written edition. Michelle previously served as Director of Public Policy/Grantwriter for the Alzheimer’s Association of Los Angeles, Director of the Middle East Commission for the Los Angeles JCRC and was Press Secretary to Los Angeles City Councilmember Zev Yaroslavsky, She is a graduate of the double master’s program in Jewish Communal Service (Hebrew Union College) and Public Administration (USC) and has taught professional development classes through the Center for Non-Profit Management. She has an honorary doctorate degree from Hebrew Union College-Los Angeles.