We are two weeks into the summer and I’m beginning to notice summertime offerings for school age kids are more segregated and less inclusive than our already segregated, non-inclusive public school counterparts. At least in our community.
Sigh!
Week one of summer had me looking for ways for my kids to be engaged and entertained in our community. I had heard from my friends about a sports camp for kids and so I went on-line, did a little research, filled out the forms and signed my kids up.
Now, if I was only sending my non-disabled daughter the story would conclude with an 8:45 drop-off in which I give her a squeeze and say, “have the best time babe!” Followed by a 12:00 pick up in which she’d say, “I had so much fun!”
A simple, sometimes boring story. But not our story.
Instead, as a parent looking for opportunities for all of my children, including my children with Down syndrome to be part of their community’s summertime activities, signing up for a day camp is anything but boring. It becomes an act of advocacy.
After filling out the forms, the advocacy adventure of follow up emails, phone calls, being passed over to the boss because the person running the camp wasn’t able to make “these kinds of decisions,” and finally a visit to observe the camp which included sports such as basketball, dodgeball, soccer, skits and swimming, to see if it would work for my kids with Down syndrome, begins.
I let the boss know that my kids love to participate in sports, do skits and swim he said, “okay, that’s good to know. We’ve never had kids like this attend before.” He then explained the camp had been around for 30 years and Macy and Augie would be the first people with Down syndrome to ever attend.
There was no hiding my shock and disappointment about this fact. I know my kids are not the only nor first people in our community who have Down syndrome. Far from it. Learning such a fact got me thinking: where are all the kids with intellectual disabilities? Even more importantly, for 30 years how have they not been missed?
I know where we have been. Out of town. Every summer since we’ve lived here we have been traveling or getting ready to travel the first couple weeks of summer. Which is likely why Macy and Augie have never tried to attend this camp before. It’s also why they have always said no to the offer of Extended School Year (ESY), a special education service, essentially summer school, that is provided to a student with a disability during extended school breaks. I wondered if this is where most of the students with disabilities are and why they’d never been to this camp. I wondered if there could be another way?
Monday came around and I sent all three of my kids to camp. Support was put in place in the form of an additional adult volunteer in both Macy and Augie’s groups as well as us sending our own personal support worker to assist as needed.
The verdict: camp was a success! All three kids had a blast and loved being part of it. There were some bumps along the way but at the end of the week Macy and August were given the same opportunities and access as their non-disabled peers and they thrived.
Something I’m wrestling with over here: the overall feeling is that we should be thankful. And I am. I’m thankful for adults and teens who care about the youth in our community and provide camps like this. I’m thankful for the ways they are mindful of all the kids attending and meeting their needs. I'm truly thankful for the openness from the camp director and his boss about making it work for Macy and August. But should I be thankful they let my kids with Down syndrome attend? Or thankful that only after me giving a decent amount of my time and expertise as well as providing a support worker, were they willing/able to put support in place for “kids like mine”? I find myself oscillating between feeling this need to say, “thank you so much for accommodating my children!” to wanting them to say to me, “thank you so much for bringing your kids and trusting us to include them. We’re so lucky to have them at camp this week.”
Even with the week at sport’s camp being a success, there is a thing under the thing which an experience like this tends to highlight and that is this: to continually have to convince people that my kids with Down syndrome should have the same opportunities and access as their peers without Down syndrome is beyond exhausting. It’s insulting and frankly a civil rights issue. The constant pressure to prove they can be in a space instead of the space proving they can support my children is backwards, othering and dehumanizing.
All I wanted to do was send my kids to summer sports camp. A five day, four hour a day camp where kids their age play games, eat snacks and swim. A camp all three of them would love to attend. Unless it’s a disability specific program, the idea that you sign a kid up, drop a kid off and pick a kid up is not our reality. There is no ease to the extra curricular life of a child with an intellectual disability. And it doesn't help that as a society we continue to ignore the fact that so many programs separate, segregate and other.
The reality is a community with separate programs and classrooms for disabled students throughout the school year is not going to, all of the sudden, become inclusive in the summer months. The fight for inclusion and belonging doesn’t end when the bell rings to usher in summer. Instead we siphon kids with disabilities into summer and extracurricular activities specifically for disabled people. Programs like ESY or Special Olympics have filled a need for people in the disability space and their families. I can see the good in there. Please hear me, I support these programs and we participate in them when we are able to. Yet, as we like to say around here, two things can be true at once. So while I can see the good, participate in and be deeply grateful for the separate sports, camps and extracurricular activities for disabled people I can also hope for and work towards a community in which sports camps and extracurricular opportunities are set up in a way to support their disabled community members and when kids like Macy and August are not in those spaces they are deeply missed.
The question I propose is this: should needing additional support exclude a person from a community activity or event? Is there a level to the support needed in which it can no longer be expected to be provided? Are our communities places where everyone truly does belong?
When I picked the kids up on the first day of camp and asked the director how it went, I could tell it had been bumpy for Macy. I listened as he listed off some of the bumpy moments then assured him, “that all sounds pretty on brand for Macy.” with a smile I added, “around our home we like to say, tomorrow’s a new day.” He gave me a curious nod. Then I added, “is there any additional support you think you need or anything else we can help with?” he shook his head. “Alright then. See you tomorrow.”
That night I plopped on the couch next to Josh and said, “I feel like after all the time and energy we spent convincing them Macy and Augie can go there, today he just handed all the hard back to me. As though Macy needs to be fixed or something. I’m tired.” Then rhetorically I asked, “should we just keep her home?”
Josh pulled me closer to him, “First, she loved it and overall she did fine today. Second, this is the advocacy babe. This is the work. We show up and we show up and we show up.”
And he’s right. And it’s exhausting. And it’s worth it.