Be very afraid (31 for 21)

Infuriating.

That’s how it feels to be told “No.”

In not quite these words, my city’s recreation department said: No, we don’t want your child’s kind. We don’t want to do what it takes to include him in our program. He is not allowed here.

As a mom, it hurts to have one child be welcomed to play in an afterschool recreation program while one’s younger child – the one with a publicly feared diagnosis – is turned away.

As an advocate, it’s frustrating to watch a bureaucracy focus on its own legal protection instead of its mission of serving the public.

As a human, it’s tragic that the fight to include people with disabilities in society is still so necessary, and it falls on the shoulders of ordinary folks needing extraordinary superpowers to make change happen.

Part of me just wants to walk away, but I can’t.

There is injustice whenever a person, because of his harmless differences, is excluded. And when that person is a gentle, fun-loving, cooperative six-year-old, it’s just absurd.

People are scared of this kid.

I’m a plan-ahead kind of person so I contacted my city’s recreation department well over a year ago to inquire about having my two school-age boys in its afterschool program so I could go back to work. Writing and editing jobs have been spotty lately because I don’t go after new business. Freelancing adds too many scheduling hiccups into my life. I’d like to find more consistent and reliable work like the part-time job I had when Raphael was a toddler, which I had to leave to provide the care he needed then. Unfortunately, that led my family to fall into debt. I simply need to climb out and earn a better income.

But with a kid who has disabilities, finding enriching childcare so one can work is anything but simple.

I’m beyond lucky to have a wonderful caregiver who is willing to watch my son and help him thrive, but I wanted him to be in a program with plenty of typical peers so he can socialize and be more physically and cognitively challenged instead.

So every so often, I followed up with recreation personnel to alert them that Raphael would need some simple modifications to support him in the next year’s afterschool program and to offer my help in arranging it.

I suppose I could have just signed him up for the afterschool program without any advance notice. It ends up I might as well have because the city did nothing to prepare. The program leader waited until school was about to start to talk about my son’s needs and what it needed to do: things like assign someone to be close by while he eats and climbs on the playground structure, make sure he goes to the bathroom, and be available if he needs help buttoning his pants.

I went out of my way to make Raphael’s participation work by providing a list of my son’s individual needs and strengths as well as care strategies that work well. I provided an ideal candidate ready to start (and willing to volunteer her time, too!) as Raphael’s direct care assistant. I provided job descriptions and salary standards for such a position, staff training and grant opportunities, information on what other recreation departments were doing to support differently abled people, as well as loads of resources about how to be inclusive. Later, I even offered to pay directly for my child to have an aide with him.

The folks responsible for the city-run afterschool program refused to discuss the information I gave them and only allowed us to pay tuition to have Raphael attend for a three-week trial as long as I went along with him and was 100 percent responsible for him.

Newsflash: Having Mommy care for her child while everyone else is led by recreation instructors is NOT inclusion.

I went along with the trial-period plan in hopes of showing the staff that it wouldn’t take much for the program to successfully include its first kid with Down syndrome. I shared several ideas.

For example, I suggested that the program instructors stop ignoring my kid because they figured Mom was handling him and instead address him directly and treat him like he belongs. I explained how it was inappropriate to make all the children stay in line when walking into the building with the exception that they could pass by my son as if he weren’t there. I demonstrated how if Raphael got a head start walking to the gymnasium for an activity, everyone could get there at the same time to hear the rules of the game together.

Everyone in the chain of management repeatedly made it clear that they didn’t want most of my advice.

Meanwhile, some interesting things happened during the trial period. I watched how children in the program took Raphael’s hand to show him the way, invited him to sit with them for snack, and modified their play to include him because kids are great at being natural peer supporters when adults don’t interfere. The young, barely above-minimum-wage-earning women who instructed the kids even started to include Raphael more.

In his short three weeks there, Raphael added a lot of benefit to the program. He has that tendency to help people be better at being people.

This kid even hugs pumpkins.

Since the trial period ended, Raphael gets sad when we go to pick up his brother from the program because he doesn’t get to join in the fun.

Inclusion is about making a conscientious choice to know and mediate the different needs of different people without excluding those who don’t fit a predestined plan. Being inclusive is about making little tweaks and accommodations as they are needed. It’s not that different from providing typical childcare. Being inclusive doesn’t have to be a big deal.

But the powers-that-be in the recreation department dragged their feet for months and then, instead of figuring out how to be inclusive with the resources they already have, spent their time figuring out how to deny my son access to the program without breaking ADA law and without looking like total asshats. The city took a few weeks to review its supposed “results” of the trial period and then officially told us Raphael was unwelcome because of his different needs.

For the past few months, I’ve heard plenty of lip service from the city’s recreation employees about how inclusion of people with disabilities is their goal, how they, too, have kids with special needs, and how nice it would be for the city’s recreation department to include Raphael followed by a variety of “buts.” The excuses boil down to this: Inclusion is just not a strong enough priority.

Ironically, the day we were finally informed that our son could not come back to the program, the city council spent most of its evening meeting spewing self-congratulations about how inclusive it was. Blech!

This isn’t over. If not for my son, for the sake of my community, I aim to make change happen so all people can participate in public activities without discrimination.

I have put countless hours into this already.

Really, I am just beginning.

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Not quite 31 for 21. In honor of Down syndrome awareness month, I am posting to this blog nowhere near every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015