Among the cruelest of the cruel realities of severe autism is what it can do to relationships with siblings. In that, our twins, Jake and Ben, unfortunately, are not unusual.
By the time they were toddlers, their paths were diverging. Jake craved a relationship with his brother. When Jake started babbling his pre-language chatter typical of little guys (and gals), Ben was one of the people he babbled to. Ben could’ve cared less.
Ben ignored Jake’s constant overtures of interaction. Jake was a gregarious little boy, and had his sibling been typical, we know they would’ve been a pair with their own language they alone could understand, with a relationship to go with it. From the time they were in her womb, Karen and I were eager to see that happen.
God, I hate autism.
Karen wasn’t able to return to work due to autism, becoming Ben’s primary parent, because it was practical. He became her full-time job. We shared Jake, but I got most of the best stuff — the activities, the outings, the “Daddy-Jakey vacations” (short out-of-town excursions), all of the things Jake would enjoy that Ben wouldn’t, or couldn’t. One of the activities Jake and Ben did share (sort of) was the various visits to therapy sessions, with Jake hanging out with Mom in the waiting room. At least there, he had some interactions with other similar sibs, their own brothers (or less commonly, sisters) in session with their speech/occupational/physical/whatever therapists.
As Ben’s behavior became more unpredictable, and sometimes volatile, and yes, sometimes frightening for his brother, and his development stalled as Jake’s soared, their worlds became increasingly separate, their interactions rarer and rarer. Ben had no real friends, while Jake’s social circle became appropriately wider — though not quite typical. His play dates and, as he got older, socializing, usually happened outside of our home.
We were determined, as much as possible, to provide Jake with as many typical experiences as we could. I would take him to movies, music events, sports workshops, drama camps, while Karen took Ben to therapists, which I also did on the weekends, when Karen tried to do some things with Jake. But there were few “family” outings. Each boy had their own needs and interests and desires. And aversions.
As they got older, being with Ben became a true skill, requiring a huge skill-set. You have to know so much about him to be alone with him, and it is a very rare person who can be alone with Ben. Jake was never able to learn those skills. When he was a kid, it was simply a matter of safety. If Ben became angry, Jake could be a target.
At 12, Ben had to move out (as I wrote about in The Chronicles of Ben, and for the radio program, This American Life). For five years, he lived in Oconomowoc, Wisconsin, where we spent every Saturday, 90 minutes from our home in the Chicago suburbs. Jake joined us from time to time, but weekends for a middle schooler and high schooler is prime time for a good, normal life — which was always our goal. Autism destroyed Ben’s life. We didn’t want it to damage Jake’s any more than it already had.
From Wisconsin, Ben moved to Cleveland nine years ago to a great autism program called Monarch. Until the past few months, before we both were finally able to move to Cleveland, Karen and I drove back and forth every other weekend, and the brothers’ direct contact became even rarer. They saw each other on some holidays and occasional long weekends, but otherwise, the gulf between them only widened.
Jake has never had a chance to know, first hand, the adult Ben, to bond with him, to see his personality, or his needs, desires, limitations, strengths, tastes, and everything else.
They are now 26 years old. And, amazing is it seems, and it only dawned on me this morning, Jake and Ben have never been together without Mom or Dad very close by.
Not once.
That is, until now. Today will be a first.
And it is all thanks to the pandemic. Karen figured out how to turn it into a huge opportunity.
Jake works at a Chicago area community mental health center. Since March, he has been socially isolating with us in Cleveland, and won’t be going back until at least August.
Last week, Ben’s group home, under a directive from the Ohio Governor, was able to start some restricted visitation, after more than three long months of no outside contact.
And here was Karen’s idea. I would drop Jake off close to Ben’s house, but not within view, and park further away. If Ben saw me, he would immediately head to the car for our usual visit.
But with Jake, there is no template. Jake showing up is not something that would bring such expectations.
One of Ben’s staff would bring him out to greet Jake, and off the three of them would go. Walking is one of Ben’s favorite activities.
We can’t assume all will go well. But Ben is very conscious of Jake being his brother. Jake is the only person he ever has allowed to ride along on visits. And when asked who is his family, he will tell you, “Mommy Daddy Jakey.” So we are cautiously optimistic. Even if the first try fails, Ben might become more accepting with repeated attempts. We just don’t know.
As I type this, I am a 1/2 mile away from Ben’s house, parked on a side street, awaiting Jake’s call. As every minute ticks by, I am relieved to have not yet heard from him, meaning that the visit hasn’t needed a premature ending, at least not yet. Twenty one minutes and counting.
~~~~~~~~~~
Jake just called.
“Mission accomplished,” he said.
It went great. I am overwhelmed. Close to tears.
Karen had emailed a social story for Ben this morning:
A Visit from my Brother Jakey
Ben’s brother Jakey is coming for a visit today.
Jakey has some cookies and a new book for Ben.
Ben and Jake will take a walk together.
Jake will come back for another visit next week.
Baby Ben and Baby Jake
———–
When Ben emerged from the house, with his aide, Soonarie, he walked up to Jake, and gave him a big smile.
And then it was time to walk, for a full half hour. Ben even briefly reached for and held Jake’s hand. (But don’t worry, all covid precautions were applied.)
And when Soonairie took out her phone, Ben knew why.
“Picture,” he said.
Ben walks fast. As Jake said, “He walked at pretty much my speed,” which is practically a jog for geezers like me.
Yep, twins.
And, as he does with us, when he got back to his house, no long goodbye. Or even a brief one. Ben walked right through the door, without a glance back. Jake said, “Ben is the ultimate man of the moment.”
We are planning on making this a weekly event. The tough part will be when Jake is called back. But Ben has a sharp memory for the people in his life. He still talks, in script fashion, of therapists and teachers and aides he hasn’t seen for twenty years. However long these visits can happen, they will provide, we believe, a deep foundation for the relationship we hope they will have as our futures unfold. We ain’t getting any younger, as it is said, and this was huge for us.
And it was by far the best Father’s Day, no, one of the best days, period, that I have ever had.