Isolation and Inclusion

Today my son started first grade. There was no busing today, just hundreds of parents and kids in their various spots along the school. Nico was happy to walk from the car to school (it was a longish walk due to parking hundreds of parents) and was willing to leave the playground alone, but got very upset when we approached the line. He yelled. He resisted. I was carrying his backpack and some extra bags, so picking him up (when resistant) was difficult. I felt eyes turn to me and Nico – as happens because when someone shouts wordlessly and loudly, you turn to look – then slide away. There was no way he was going into the scrum/lines of kids and parents waiting to go into class, so we eventually found a spot at the edge and sat down, bending in the middle to hide his face.

I sat with him on the asphalt for a few minutes as around me parents and children chatted happily. He was quiet, so no one was looking at us, and gradually the special ed teacher and his aide came and found us. As the second graders went inside, Nico stood up and took my hand and told his aide, “Bye.” After a few false starts and some re-collapses to the ground, but no more shouting, He finally took his aide’s hand and walked inside with her, though not especially joyfully.

Eventually, his actual class followed.

This is hard. Shame and embarrassment, mixed with defiance (how DARE you look at me kind of thing) are normal responses for parents of kids with disabilities. I generally reject these emotions, but am allowed to feel them when everyone stares at my child. I get over that quickly.

The real issue is that Nico chooses to sit apart, isolated on the asphalt, waiting to go in, making no contact with other parents and children. I don’t know a single name of a single parent of any of Nico’s classmates. They all seem to know each other. I don’t know the kids’ names, though many seem to know Nico. Somehow I need to make these connections, I need to help Nico make these connections to the extent possible.

Of course, in the end, he took his aide’s hand and walked inside to the first day of class, where right now everything is hopefully going pretty well. 

I sometimes get angry when people deny the disability aspect of Down syndrome – the “just different” rah rah rah cheery folks, because it can make you feel ashamed when things get really hard. We need to own the challenging stuff too – recognize it, discuss it, ameliorate it, empathize, and avoid twee sympathy and platitudes. Things get to be hard. We get to be tired. We get to cry. We get to complain. Doing these things does not make us bad parents, ableists, or somehow devalue our children’s existence. We get to look straight at the hard thing, agree that it was challenging, then try to find our way through or around it. That’s my goal anyway.

And this morning was hard.

8 Replies to “Isolation and Inclusion”

  1. Anonymous says:

    Well said, David, and I think it important to allow yourself to feel and acknowledge the anger and other emotions. And I hope that the future days become easier for both of you.

  2. Cordelia says:

    First days of school are some of the hardest, I think, for parents and children alike. Watching the self-isolation is the hardest part of all– a simple thought that I don't think I can give enough weight to here. It is the *hardest*, for me, of all. That said, I am sure that the atmosphere was overwhelming — so many parents and kids and milling about, as you said, and I'm also sure NIco was not the only kid overwhelmed, even if he was loudest about it. Is this the same school/class Nico was in last year?

    Keep in mind that most of the people-seeming-to-know-each-other is meaningless chatter from people who didn't see each other all summer and who don't know more than each others' names and faces. But how did they get that far? Is hanging out on the playground after school possible? That's how I met everyone, and even that was hard… but after years of explicating my kid to the other adults around and to some of the more interested children, people were willing to reach out to her in ways they might not have, otherwise. I know school-based playground time is not possible in every family's routine, but if it is, even one day a week, I strongly recommend it.

    I hope Nico finds his footing fast — and I'm sure he will, once the chaos fades away and the routine builds in.

    1. David Perry says:

      We invited some parents and their son over for lunch on Saturday (from Ellie's old school in this case). It was a big social step for us.

      I'm a homebody scholar-writer. I'm not good at hanging out at the playground, but that's an interesting idea. I could have him not take the bus home on Thursdays.

  3. Anonymous says:

    Well said, and I agree. We are "it is what it is" kind of people, and I see no advantage for us, for our kids, or for society in pretending it isn't what it is.

  4. Lisa Amor Petrov says:

    The first day of kindergarten with my son Jordan was a nightmare! He flat out refused to go into the school building. He grabbed the outdoor metal banister, locked his arms and screamed "NO! NO! NO!…" at the top of his lungs. All the other kids and parents stared. All I could think was "they're just glad it's someone else's kid."

    No one else had any issues that morning. For me, it was like Jordan was the voice of resistance for all of them.

    We had just moved from out of state a month or so prior and all seemed well, so I was totally surprised by the whole thing. But, I didn't know any parents and it seemed like everyone else's kid was the younger brother/sister of older kids and everyone knew each other already. I felt out of place. A stranger.

    It took over an hour to get Jordan to go into the building (with the help of the school social worker). And I quickly had to run home and get him his Pooh Bear so he could have him in class. Kindergarten class was only half a day, lasting all of 2 hours, and he'd missed half of it already. It was heartbreaking and nerve-wracking.

    Then, I had my own new job to go to where I didn't know my way around or know anyone either, but no screaming "no" for me…

    I didn't know it at the time but it was the beginning of our journey to a diagnosis.

    1. David Perry says:

      Lisa – Thanks for sharing that story. I've often thought that in many ways it's easier for people in our situation. Our diagnosis was clear and came in the first 5 minutes of Nico's life, without any mystery. Not that the next 5 minutes, 5 hours, 5 days, 5 months, were easy, but at least the path to adjustment was pretty clear.

      At any rate, thank you.

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