Finding out your child has a disability can be life-altering. Just ask Erica Hobby. Two years ago, when this Pikesville mother of two first learned her son has autism, she found herself adjusting to a new reality – one that left her with more questions than answers.
Erica, who currently sits on The Associated: Jewish Federation of Baltimore’s Disabilities Committee, talks about her personal journey, her determination to provide meaningful, Jewish experiences for her son, as well as other children with disabilities, and how her daughter is determined to join her and make a difference.
My son Jonathan wasn’t diagnosed with high-functioning autism until he was seven. Looking back there were always small things that stood out and that raised the question for us. I remember in preschool he didn’t want to sit on the grass so the teacher would put her sweater down so he could sit comfortably. He often ran away when we would be out running errands. And although he was very bright, he was socially immature.
It was hard when we found out he had autism. All of a sudden, we had to adjust our expectations. We began to think about his future – what does this mean for his life? He’s a smart, kind child, but will he have the ability to pursue and maintain his desired career? Will he live independently? And what kinds of supports might he need?
Having a child with disabilities can be so isolating. Unless you’ve walked in someone’s shoes, you can’t really understand what someone else is going through. We are blessed with amazing friends, and as much as they are supportive, there are aspects of our day-to-day lives that they can’t understand or relate to. Seeking out other moms of kids with disabilities has been critically important for me. We serve as a tremendous resource and support system for one another.
One of our main goals is to give our son the skills so he can be a capable and happy adult. He attends a school that incorporates the building of social and communication skills into their curriculum.
Fortunately, our community, and The Associated also have several programs for children with disabilities. One that has been most impactful for us is the Inclusion Camp at the JCC. My son has been going for two years and the staff knows him inside and out. They recognize his strengths, along with his challenges and understand how to nurture his growth. He’s enjoyed activities like tennis and karate, and camp has become a home away from home.
I’ve also taken him to Karma dog at the (Macks) Center for Jewish Education (CJE). He had a school show he was preparing for and he enthusiastically practiced his script reading to the dog.
One of the struggles we had was making sure that our son felt a connection to his Jewish roots. Our daughter attends Jewish day school, has a solid foundation, and is proud of her Jewish heritage and identity. We wanted our son to have a similar connection.
A few years ago, I approached Eyal Bor at Beth El Religious School about developing Shabbat services geared to children with disabilities. Beth El had previously done a few throughout the course of the year and we wanted to do more to enhance this offering. He loved the idea and soon Kol Echad, a multi-sensory, inclusive Shabbat service, was born. We worked with CJE, SHEMESH and the JCC, three Associated agencies. They brought their educational expertise working with children with disabilities to the table. And we had six partner synagogues participate in year one.
Last year, we decided to expand the program to include additional synagogues across the community. The monthly services rotate between the synagogues. CJE is now coordinating the program and The Associated has been so supportive.
Led by Cantor Karen Webber, these monthly, multi-sensory, kid-friendly experiences are welcoming and non-judgmental. We have designed our own siddurim and we project a large, visual one in the front of the room. In addition, each synagogue receives a Sensory Kit, which includes everything from noise-cancelling headphones to reduce sound stimuli to sensory fidgets and light filters that reduce fluorescent lights’ harsh glare.
This has been an amazing experience for our son. This is a kid who always lets us know when he doesn’t want to go somewhere. Every month he’s excited to go, to dress up, to pick out his kippah. He quickly learned the flow of the service and frequently raises his hand to answer the Cantor’s questions.
Having a special needs brother has really inspired our daughter to get involved in this arena. At the end of the month, she and I will be attending the Jewish Federation of North America’s Jewish Disability Advocacy Day in D.C. She’s so excited about advocating for a cause she is so passionate about. In addition, she applied to the TNT camp program at the JCC and wants to work with special needs children in the preschool.
Rina Janet, of blessed memory, a former Associated Women Campaign Chair, and dear friend, often said in regards to her volunteer work, “I get so much more than I give.” This is what Kol Echad has meant to our family. Our goal is to keep that tent wide open so all families with special needs children feel they have a meaningful home within our community.
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