How's Akiva doing? People with Disabilities and Wartime
by Beth Steinberg
Thank you to advisory board members, Beth Steinberg for sharing about her family experience in Jerusalem. We send our love and prayers to our many friends across Israel and pray for peace. You can subscribe to Beth’s newsletter here.
The other night, we looked around and said, “where’s Akiva?” A quick walkabout the house found him in our safe room, reviewing what to do when the siren wails. We’ve talked this through with him many times (Akiva is 26 and has developmental disabilities), and even though it’s now been some days since the last siren, I was glad that he was both on top of the details - go inside calmly and close the door tightly, and wait for the boom (actually wait 10 minutes) - as well as still internalizing it in his own way.
Indeed, we learned from the first time in 2014, when rockets reached Jerusalem, that running into the safe room - we have a leisurely 90 seconds compared to Southern communities where they have 15 - wasn’t the right thing to do, especially for Akiva. He does better when we talk it through as we go downstairs, guiding him to move at a pace but trying not to yank him because we’re feeling anxious. (One time, we rushed him out of bed and into the safe room, where he promptly fainted - it was hot in the safe room and he’d been asleep.)
That takes me back to obsessing about those families in their PJ’s last Saturday, just waking up and rubbing their eyes before they understood that there were Hamas terrorists coming to kill them in their homes. Those taken captive. Those who managed to stay safe. Those who’ve lost their lives, their loved ones, their homes, their…everything.
And what about the children with disabilities? One of the captives is a young teen with Autism (she’s with her grandmother, who’s neither young nor in 100% good health), who’s described as sensitive to her surroundings and to noises. I can’t imagine how she’s coping and hopefully surviving this. Will those holding her captive understand that she has special needs, even if they’re not completely visible ones? I haven’t yet read enough about those families who survived who are managing their new realities and the needs of their children who have disabilities.
We did find out about 2 young people with disabilities, evacuated from Netivot, who’re in a hotel downtown - a young adult with Down and a teen with Autism. I’m sure there are more but this came via someone who went to volunteer with an 89-year old friend (!) whose a retired social worker. She wanted to help others by showing up to listen and offer support. We posted to our Shutaf’s summer counselor staff list, and I reached out to a local looking for volunteer work - just to help them pass the time. My middle son, Gabe, joined his friend David, and brought therapy dogs to a group of evacuated families who enjoyed the easy affection of a well-trained dog.
My longtime colleague and Shutaf co-founder, Miriam Avraham, moved temporarily to the quiet Arava desert community (near Eilat) where her son lives, with her husband and her adult daughter who has Down syndrome. Miriam doesn’t have a safe room in her home on a moshav outside of Jerusalem, and it was too stressful to get her daughter, who has anxiety issues when it’s not wartime, out of the house and somewhere safe each time the siren sounded. Normally, her daughter lives in an apartment with 3 other peers, but that wasn’t a realistic plan for her right now.
A group of disability organizations here in Israel posted this notice about the needs of a particular group of captives, writing, “…we already know that among the abductees there are also persons with disabilities, including children and elderly, some of whom have invisible disabilities. These include at least two children with autism, a child with a life-threatening allergy, a person with special functional-related needs, a person with an autoimmune disease, and other individuals with a variety of illnesses, requiring daily medical treatment.”
I think about Akiva again. He just finished treatment for testicular cancer in late May. Thankfully he’s cancer free now and just has lots of follow up which which I wrote about in August. Imagine if we were delayed in his chemo, or worse, and I can’t imagine anyone having taken Akiva anywhere during those tough months of treatment last spring - he could barely walk.
When he was younger, he understood less what was happening at moments like this, or was just not able to take it all in. Our initial game plan included pushing him down and laying on him on the ground if he wasn’t able to comply. I wrote about it here after that Friday evening when we first heard the siren. Of course, we looked at each other, and said, “you think that’s a siren?,” as opposed to the Shabbat-has-arrived-siren that you hear every Friday when shabbat begins but which we don’t hear that well in our neighborhood.
Yesterday, when there was an afternoon siren, we were all out-and-about, feeling cautiously optimistic about going to the park, or on a longer walk - it’s been a week since Jerusalem had rockets. Maybe it’s a sign that we’re learning how to adjust to these new realities of life. I was at the park with our grandson but not alone - we picked him up and ran into a nearby building, adrenaline pumping, trying to find our calm. The booms were loud and fast - we later heard the rocket fell in an open area, meaning uninhabited (which is an issue in the South where the Bedouin live and move around in). The miraculous Iron Dome costs about $50,000 each intersection - they deploy it as needed.
When Akiva came home - he was with Jari, his caregiver, at the grocery - he sat quietly for a while in the living room, clearly glad to be at home. We played some happy music for him - Dan Zanes for the win - and slowly he adjusted. These last 10 days, he’s been watching some of his most favorite musicals, including 1776, Grease, and the Wizard of Oz. He’s ecumenical in his enjoyment of all versions of these shows, professional and community theater productions, even ones he finds on youtube in foreign languages. Finding calm in familiar things.
Akiva actually had a program to attend today - a limited group of participants - for the first time since this all began. We reviewed rocket safety procedures with Akiva - in a building as well as if on the bus to-and-from his program, which is about a 20 minute drive from our house. This morning, Akiva acted out the procedures on his own - that’s a good thing - even if he wouldn’t automatically do any of it in an emergency.
It’s not just rockets. There is no shortage of painful stories to share, things to discuss as we all digest, in some way, the events of the last 10 days. We were talking about the son of friend - he’s missing, captive in Gaza, injured badly in his arm. His friend who’s parents are currently sitting shiva, took a grenade hit that killed him, and probably injured Hersh. I suddenly realized that Akiva had grown very quiet - he was absorbing the story (so often he’s really in his own world) and was repeating some of it. I turned to him and talked it through - the person was injured, there was blood, and yes, he used a t-shirt to make a tourniquet.
If you’re a person with disabilities, be it physical, emotional or developmental, your ability to remain safe depends on those around you and where you live. As for your greater emotional needs, having some kind of routine also helps, as we always see with Akiva. At Shutaf Inclusion Programs, we’re now working on online activities for our teens and young adults, as well as a care package for every participant. We’re also trying to find the right therapeutic response for our participants, especially our teens and young adults, and even for our families as well.
It’s a work in progress. All of this is so new and so hard. How I wish there was a different path towards a better future for all who live here.