I’m now officially the parent of older children. My husband, Ira, and I, had no idea this would ever occur. Three boys; Natan, 24, studying Theater at Tel Aviv University; Gabriel, 21, finishing up 3 years of IDF service as an artillery guy, and Akiva, 17, a happy go-lucky teenager who also happens to have Down syndrome and PDD-NOS, on the Autism spectrum.
When Akiva was born, someone smart and thoughtful told me, “don’t think more than five years in advance.” Even five years seemed extraordinary at the time. What they didn’t tell me was about the challenge of adulthood, about growing older and raising a young person with disabilities. So below, are 10 things I’ve learned about raising an adult child with disabilities.
1. They will always wake up early. Even when they’re 55. Of course this isn’t always true, but my admittedly anecdotal research collected via chats with friends of older children and young adults, has noted that our crowd isn’t “from the sleepers.” My son goes to bed between 8:30-9:30 PM and wakes up between 5:45-6:45 AM. Year-round. He’s 17! Occasionally, when on vacation, he might sleep until 8:00 AM, cause for much celebration. As I stumble out of bed on Shabbat at dawn, I always try and remind myself how delightful Akiva is in the morning; full of the speech and song that often eludes him later in the day.
2. Your clothing budget for a child with a disability will exceed that of your budget for your other children. Given that a good percentage of Akiva’s clothing goes missing during the course of the year, as it’s a Sisyphean effort to keep track from school to afterschool to home (that’s 3 different bus rides alone), we simply buy more for him compared to his big brothers. He’s got lots of hip, long basketball shorts, his older brother made sure of that, and fun long sleeve shirts in bright colors, as per his next oldest brother, but I wish he could wear more than pants with elastic waists–he needs options that he can manage well on his own. One day, I will really splurge on those fancy jeans cut just for people with Down Syndrome who have cute, rounded bellies and short legs.
3. You’ll develop selective deafness. Akiva is a huge music fan, and he spends time flitting between the music of Sesame Street, Oklahoma! and The Talking Heads. I know, he’s got eclectic tastes. We’re a musical family, and enjoy listening as well as singing and performing but there are times where I’m overwhelmed by sound, especially when he stands next to me singing, with his iPad at full blast. His daily playlist, a source of so much personal pleasure, unfortunately gives me a headache. I’ve learned to actively tune it out, reacting with surprise when visitors note the household cacophony.
4. Finding new ways to celebrate your child will be challenging. Especially as they may never graduate college, or marry, or have children. Not that we’re promised graduations, weddings, and grandchildren with our children who don’t have disabilities, but it’s more in the scale of possibilities. And so, my husband and I, and Akiva’s two big brothers, planned our son’s bar mitzvah with his enjoyment and success in mind. And our friends who showed up from near and far celebrated him and his achievements with us. It was wonderful. Then, it was over, and he went back to his quiet corner–that place where the world wants people with disabilities to be. I was bereft, wondering “That’s it, at 13?” What other occasions would he have in his life where he would receive the love and adulation that he experienced for that magical week? I don’t have an answer yet.
5. One day they will successfully discover their sexuality, and you’ll be thrilled. Sex, from the potential of it to open discussions with our children about it, is a tough topic. We hope they’ll be safe and careful, as well as love and be loved. When it comes to our children who have disabilities, we shiver in fear at the potential that they’re 4x as likely to suffer abuse as opposed to their peers without disabilities. We worry that they’ll lack the social filters to choose and choose well, that they’ll never truly know what it means to be sexually mature. Guess what? We’re wrong. Thankfully today, there are trained therapists and more open attitudes, so that we can navigate this wholly ordinary moment of development with all of our children.
6. Your guilt over what you just can’t or don’t want to do anymore, will ease. You know, all that stuff you did with your kids when they were younger: art projects, swim lessons, reading endless books aloud, and trips to the park? You will appreciate that as the older parent of an older person who has disabilities, you’re allowed to move on from the activities of a younger child (and its OK to want to move on). That doesn’t mean you’ll be absolved from doing the aforementioned activities, but you’ll allow yourself those moments of “not now,” and you may even hire out assistance as needed, and that’s just fine.
7. You will be jealous. Forever. Regardless of how much you love your child and will always love your child, you may have moments of intense jealousy for what you presume you were denied. You will be jealous of your friends and the freedoms they enjoy as parents of older children without disabilities–dinner out, weekends away, travel to interesting places–adventures that you too can enjoy but may find burdensome given the tremendous pre-planning and effort required. This will ease as you establish parameters for personal freedom, part of your parenting voyage.
8. People with disabilities are excellent judges of character. I’ve learned that Akiva has an uncanny ability to approach those who are unsure of how to relate to him. He’ll lay his hands on them–exactly what they don’t want–and if they’re “good people,” they’ll realize the gift of friendship he’s offering and go with it, and what’s more, learn to appreciate it and him. Then, we know, they’re our kind of people.
9. Working in the field of disabilities, either service-based or in advocacy, may suddenly become exactly what you must do in your life. I swore up and down after Akiva was born that I would never work in the field, until one fateful day after I moved to Israel, when I discovered there were no better options for day camp in Jerusalem than there had been in New York. Tired of the answer “no,” I co-founded Shutaf Inclusion Programs in Jerusalem, and nearly eight years later, we serve more than 150 children and teens year-round with a range of inclusive programs. I’m thrilled and delighted to be part of a more meaningful worldwide conversation about inclusion and acceptance in the Jewish community and beyond.
10. You will learn to ask for help when you really need it. As much as you’ve fooled the world that you’re fine, your family is fine, and your kid with disabilities is just dandy, you may need extra help at times. Last spring, Akiva was in the hospital with pneumonia and it was all hands on deck. We wouldn’t have been able to cope otherwise. We were grateful we had friends and family who offered support, even before we asked, and who continued to help out during the recovery back home.
Reading this list makes me feel both overwhelmed and amazed. We’ve learned so much, despite the steep learning curve. Even when we felt overwhelmed or unsure, we’ve had moments of intense gratitude for all that we’ve experienced and will continue to share, together–Akiva, his brothers, my husband and I, our extended family and close friends.
Trust your gut when it comes to your child’s needs. Thankfully, there’s no shortage of information online, as well as parent groups and books to read–but personal experience makes the difference as you and your child get older. Laying the groundwork for his or her successful and happy adult life will take time, research and bravery. Isn’t it great that you’ll be ready for this next adventure, armed with all you’ve learned–from him, with him?
