It’s Monday morning on June 19th, moments before Aleck arrives at my apartment for a full week of momtertainment. That time we have in the city after Chicago Public School ends and before Chicago Park District Camp begins is always a rough time. Last summer we experimented with another local CPD facility that offers day camps for the kids, but Aleck said he’d rather be locked in solitary confinement than spend another day at that place. And with his cast on from the hairline fracture of his tibia, we didn’t have many options to keep him occupied. June is typically one of my busiest months and this June didn’t disappoint. At the end of the month, I was going up to photograph Camp CHI so I had been picking up extra days in my Aleck schedule to offset this trip and to help Craig so he could keep working. Thankfully I had that entire week without a gig so I was able to line up playdates, plan some activities, lean on my parents a bit so I could get to the gym, and already blocked off my evenings after I put Aleck to bed to get projects delivered to clients. This was going to be a very long week, but the next Monday Aleck would be starting camp and we could go back to a more regular schedule. When my phone rang that morning, I heard a very different story.
Right before Aleck arrived our local CPD camp called to tell me that Aleck would not be able to start camp the following week. They just had a meeting with their risk management team and the policy is that no camper with a cast on is allowed to attend camp. I fully looked like one of those cartoon characters who’s head just turned bright red and exploded into a million pieces while the hand is still holding the phone up to their heads. WTF. Holy shit. What are we going to do for the next two weeks? My heart was pounding so hard I could barely breathe. On the phone I started to beg, our jobs depend on Aleck going to camp, Craig cannot make a living if he has to watch Aleck day and night for the next week while I’m up at CHI. There has to be someone else we can talk to. I let my contact at the camp know that I knew this wasn’t her fault or her decision, and I know she’s a huge fan of our guy, so she agreed to help me source the right person at CPD to push this all through. After all, I explained, this isn’t just some kid who has a cast. This is a kid with a physical disability who experiences frequent brakes as part of this disability. He’s already coming to camp in a wheelchair, he’s had his wheelchair at camp every single year, and they already have an aide in place to take care of him. Truly, this is a form of discrimination due to his disability. And with Aleck we always have to ask, what if something happens again? I need to count on someplace to give my son a fun summer despite his disability and a place that will allow his parents to work.
Aleck’s cast was originally scheduled for removal on the 4th of July, that would be 8 weeks, but no one is in clinic that day, so we had to push it to July 11th. Immediately I called and left a message for his surgeon, could we have the cast removed one week earlier instead of one day later. Thankfully, the next day I heard back that Aleck was approved to get his cast off one week earlier, so on 6/27 it would be removed, just over 7 weeks after his break. Technically, they didn’t have any openings so Craig would have to be there with Aleck at 7:30am, and not a minute later otherwise that cast wasn’t going to come off. That would mean Aleck would only miss the first day of camp. Phew, that was a huge relief.
A few days later I got a call from the Chicago Park District disability office. His name was Larry and as soon as he started speaking, I knew I had met him before. Aleck was only two when we attended an adaptive bike event right near Lurie hospital, the summer after our six-week stay at the Rehabilitation Institute of Chicago, now Shirley Ryan. And he remembered me too and Aleck’s condition. Immediately I felt a bit of relief. We talked through all the reasons why risk management was denying Aleck access to camp with his cast on, and all the resources that were already in place to insure a seamless transition into camp. The usual reasons for why a camper with a cast isn’t allowed didn’t apply to Aleck. He wasn’t more unstable than normal since he’ll be sitting in a chair the whole time. This won’t put too much stress on the staff since he already has an aide. And the bottom line is this is all part of Aleck, it might happen again, and the camp needs to be prepared that Aleck isn’t a typical kid which is why we already have these systems in place to get him to summer camp. I admitted to Larry that I felt a bit funny fighting so hard for one day of camp, but if I can set a precedent then it’s all worth it. The last thing I want to do is to go through this battle all over again. There’s no guarantee that I won’t but if I win this victory maybe it’ll make the next time easier. Later that evening Larry called me back and everything had been worked out, Aleck was cleared to attend the first day of camp. The next day I got the call from the camp director, and she was joyful delivering me the news as well.
Aleck is now into his second week of camp. The cast was removed but he’s still pretty unstable right now. His surgeon is requiring him to wear his brace on his right foot, his AFO, at all times. So going to the pool he must put his swimsuit on with his brace and shoes, walk to the pool, then sit on his chair by the pool, take off the shoes and brace and socks in order to get in. Please keep in mind, Aleck isn’t doing any of this dressing and undressing. At camp it all falls on the aide, and at home it’s his parents that must do all of this work. When he needs to get out, it’s that whole process all over again. That means I still have an 11-year-old infant living with me, who can’t get out of bed unless I go and put on his socks, brace, and shoes. He’s also kind of hard to hear since we have AC window units in the apartment, and I got rid of my baby monitor ages ago. I woke up the other morning at 3:45am convinced I had heard him yell for me, my heart was racing, I was sweating, and as I went to the bathroom, I sat there quietly just listening for him again since we both share a wall with the bathroom, thankfully all was quiet.
And with a tween he’s learned the value of sleeping in this summer. He likes to go to bed around 10pm and sleep until 8:30/9:00am. However, he wants to get up when he decides to get up. This means that when he wakes up and shouts for me sometimes, I’m outside walking the dog, sometimes I’m outside doing my morning mediation, and sometimes he’s the alarm that wakes us all up. When I come in his room, he never fails to grill me on where I was, why didn’t I hear him immediately, why I didn’t come right away. Slowly he’s learning that I have other things to do in the morning, and that he needs to be patient, but I’ll be there. It must be so difficult for him to be stuck in his bed like that, it’s been going on since the break, and I was looking forward to hearing him put, put, put, out of bed by himself. But that’s not happening for the next month, so it’ll probably be August, after he goes to Camp Simcha, before I get to hear that sound of his bare feet on my floor again.
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