Today? I want what I can’t have.
I want Akiva to sleep late. Really late. So late, that I have to march into his room, check that he’s alive, and wake him up because hey, it’s 1 PM, and I’m your mother.
I want Akiva to brush his teeth, handle bathroom details, and get dressed. By himself. Without scratching me if I hit the wrong sensory buttons.
I want Akiva to pour his own juice and get his own breakfast, while I lie indolently in bed and answer questions from my room, as one might do with their young adult children.
I want Akiva to speak and not point. To engage more fluidly and not struggle to express himself. To find words to describe what’s on his mind. To not just have language in the early hours of the morning when he sings and chats almost freely it seems.
I want Akiva to call a few friends, head for the pool, annoy me by not answering my phone calls and text messages, leave a mess in the kitchen and sit outside smoking his hookah even though he knows I think it’s an unhealthy habit.
I want Akiva to have a summer vacation the way a 18-year old might, complete with late nights, noisy friends eating me out of house and home, and a devil-may-care sense that the world is his oyster.
And, I want to complain, and not have anyone try and make it better. I want to be able to just talk about it, because August is the hardest month, the loneliest month — for him and for us. Always.
I want to bitch about this, truly bitch about it, without people feeling that we’re miskehnim, sad sacks, because we have that child, the one with the big issues, the one who’s really got special needs.
How’s that sound? Bitter? Angry? Miskehn? All of the above?
In truth, I’m not bitter about Akiva’s special needs. None of us are. Eighteen years later, we’re well-adjusted, most of the time that is, happy that he continues to develop, grow and learn. Even as we navigate and consider what his adult life could look like, aware that he will never live independently, or experience the rights of passage that our older children, who are typical, will.
I am sometimes angry. I admit to that. I own that. Not angry at him, not angry at the genetic twist of fate that gave him his particular needs, but angry at a world that hasn’t made it easy, that doesn’t teach us welcoming thoughts and an ethos of acceptance for all humankind.
Miskehnim? Sad sacks? Only occasionally do we allow ourselves the pity party, as I did the other day, sobbing on the phone about the rigors of August to my sister and brother-in-law.
You know what we really are? Lonely.
Raising him, parenting him, and loving him, is by far, the loneliest project we’ve ever taken on. For myself, my husband, and I would venture to guess, Akiva’s big brothers.
Loneliness? It’s the unknown challenge, the well-kept secret of being a person with disabilities, as well as the parent and caregiver of an individual — child, teen and adult — with disabilities.
Consider these facts locally. There are approximately 200,000 Israeli children (8% of all children) who have some kind of disability. Most of them are educated in self-contained classrooms, many in schools catering exclusively to children who have disabilities, often bused out-of-district. Parents rarely come into personal contact with one another, especially as our children get older. There’s little opportunity for mutual support and friend making.
For children educated out of their catchment area, making neighborhoods friends is complicated — both by disability and limited opportunity. While most youth movements welcome children with disabilities, few are served, and activities may not be inclusive. Some children with disabilities may successfully be included in after-school activities at the community center, or at their synagogue. They may find local friends. Or not.
And it doesn’t improve in adulthood. The stats on loneliness for adults with disabilities are sobering, much more than their peers who don’t have disabilities.
Our loneliness is tied up with Akiva’s.
When Akiva has no one to hang with, neither do we. Now 18 years old, there are no play-dates for Akiva. In truth, he’s never had a play-date. Options for social excursions with him are limited to what we feel like doing with him, which is complicated. I can’t take him to the pool on my own — he needs help and he’s a guy. Outings into town generally require a 2-person team, not always available.
What do we do? We walk to the local mall, meander and have a nosh. We visit my mother, sit for a bit, and have a nosh. We stop in at the local market, or the bakery, and walk home with our groceries.
While Akiva enjoys these simple outings, he sometimes stresses even when he’s out for even a short journey, especially during vacation periods when the lack of a regular schedule is hard on him. While he makes his needs clear, he’s not always easy to cajole home at such moments.
Weekends are the worst. On Shabbat, we weigh the benefits of where and when to go to synagogue. Should I go first, or should I send Ira off, and follow with Akiva later, hoping to limit his shul time to no more than 45 minutes.
It’s not that we don’t speak to people in shul, or eat alone on Shabbat. We almost always have visitors, and often accept invites, but there’s always that question of will it work, and what’s our escape plan if we need to leave unexpectedly?
Lately, we say to ourselves, let’s just stay at home. It’s lonely, but easier. The fatigue of watching out for his behavior, even for a friendly Shabbat lunch in a familiar setting also includes taking him to the bathroom, monitoring his food intake, and trying to be friendly to our hosts. It’s just exhausting.
When we’re home alone with him, we don’t feel conspicuous. We can relax and enjoy his company. Akiva can say, and repeat, continuously, what’s on his mind. He can sing his songs, and we can sing along. We usually do.
It makes me sad for my dreams of inclusion. For my belief in community living for all members of society, regardless of their differences. In school, and at his after-school programs, Akiva is liked — appreciated for his friendliness to others, his sense of humor, and his encyclopedic memory for songs and music. It’s out in the real world that it all falls apart. For him and for us.
Even with parents, our fellow travelers, even as we offer each other unconditional support and understanding, we go back to our lives, and the path of least resistance, loneliness.
And I know I seem so unfriendly. I am. I can barely keep myself from weeping at the frustration I feel during kiddush, as we quickly prepare a plate for an eager Akiva, and try and sit him in a quiet spot where he can enjoy his treats. I think back on when I was younger, in my former community in Brooklyn, where people knew me before and after Akiva. Was I friendlier then? More approachable? Less afraid of Akiva doing the wrong thing?
Maybe. Then of course, he was younger. Cuter to the rest of the world. Big girls smiled at him, and read books to him on occasion, or carted him off to play for a bit while we sat in shul. That hasn’t happened in years.
We try and imagine Akiva living out of his birth home, in a local apartment with his peers, one where he can both discover a level of independence that’s hard to achieve with Mom and Dad watching over you all the time, and one where we know he’s safe and secure, as well as has companions with whom he can enjoy stuff.
It seems both unimaginable and of critical importance. For him. For us.
As for the loneliness, I’m not sure it will ever really go away. It’s too embedded in who I am, who we are, our family’s history and cumulative parenting experiences, and greater society’s isolation, at times careless at times cruel, of people with disabilities and by default, their caregivers — those who love and care for them, cradle to grave.
I wish it would change.
Editor's Note: This blog originally appeared on The Times Of Israel and was republished with the author's permission.
Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change.