Tuesday, 6 December 2016

The pressure of inclusion, especially at Christmas

David near school

David wasn't in last year's Christmas show. I didn't think twice about it.  This year I got a call to say, he could be in the Christmas sing along.  I'd like to say it went well. But all I can say right now is I'm watching tears drip into my Costa coffee.

David is in a specialist autism unit attached to a regular school.  This means most days he spends most of school learning in his unit and then some small part of the day, usually in the afternoon, being included in his mainstream class. This year this has coincided with the mainstream Christmas show rehearsals and he was joining in.

"There are a couple of showings next week," said Jerry, his Applied Behaviour Analyst on the phone.

After going through when would work, as some showings were with or without siblings etc, today seemed the best bet.

"He's got a choice of costumes; he can be a reindeer, a snowman, an elf or Father Christmas. But I don't know if we will be able to get him into costume, and I don't know if he will join in the actions or try to make any sounds," he explained apologetically.

I slightly giggle to myself.  I sometimes have difficulty getting David into regular clothes.  Goodness knows what he would make of a daft looking, probably very uncomfortable costume thrust onto him at the last minute. He doesn't even bother with mufti days, costumes is probably one step to far.  I'd be more concerned about him trying to get other kids to take their costumes off. After all they are at school so they should be wearing school uniform as far as David is concerned.

"Jerry," I say in a voice so chilled you'd imagine I was still in my PJs slouched on the sofa (ohh, that sounds nice), "Don't worry about it."

"David nor you need the extra stress of worrying about costumes or me.  Just go with what works for him and if he doesn't say anything or do anything it's fine.  If he needs to leave it's absolutely fine. Infact I'm not making a costume at all, that way there is no pressure. David won't think twice about wearing a costume, I'll put a white T-shirt in his bag in case but no really, don't worry about it." I said.

Jerry was obviously relieved. "I'm so glad you've said that."

And it occurred to me that maybe the unit are put under a lot of pressure to include the kids into the mainstream activities.  Obviously it's what they are there for.  To assist with integration - both ways. But I've always felt it should be at the pace for the child and things like Christmas performances are preset with perils. Things are different, people are different, it's often in a different place. All this can be difficult for autistic children.

So today at 2.15pm, I nonchalantly strolled with other nearly late parents into the 2nd Hall and tried to sit as far at the back as possible.  That way I'd hopefully be out of sight and not distract David. Despite my cool attitude I felt a little leap in my tummy as the kids started to file into the room and sat on the floor either side of the stage.  I tried not to look so I wouldn't catch David's eye when he came into the room.  Then we were asked to not take photos and the singing started.

I looked about.

About half way through the second song, I felt I'd looked everywhere and couldn't see David anywhere.  While the children were singing, one little two little three little snowmen, I was counting one and two and three teachers. There weren't enough teachers to have David in the room, and no one I recognised from his unit.

Let me tell you.  There is something incredibly down and pointless in watching a Christmas show without your child in it.  While everyone oohs and ahhs and you realise, there is nothing for you in this room.

I doubled checked the room again and then began to wonder if I'd got the right day, the right hall?
And eventually, when would it be OK to duck out the back.. pretty shortly after I'd had the thought is the answer.

I checked at reception and they called down to the unit.  Apparently there had been some incident in the mainstream classroom before the show, and Jerry, quite rightly, had decided it would be better to try another day.  He apologised for not letting me know, but would the same time tomorrow be OK?

Of course it would.  Whatever works for David.  No problem at all.

I looked at my watch 2.45pm.  Not enough time to go home before collecting the kids so I headed to Costa.  And 15 minutes later I'm sitting, listening to a 'dink dink' that are tears dripping onto the white plastic lid on my take away festive cup.

Why am I so upset? Why does my gut ache?

David is not sad.  He is blissfully unaware of anything being different or wrong.  Jerry did exactly what he should have done.  What's wrong with me?

Honestly, I still don't know.  But I do perhaps understand that pressure for inclusion that Jerry portrayed.  I only want what's best for David, as I do all my kids.  And that's whatever he needs, when he needs it so he can grow and have a life that he wants.  And that doesn't have to involve ever being in a Christmas show or anything else if it doesn't work for him. But maybe I'd thought it would, and maybe that's why I felt disappointed. Whether I like it or not, even if I create no pressure on inclusion for David, I still feel it for him.  Daft really.

So. I'm gonna dry my eyes with a scratchy napkin. Wipe the salty lid of my coffee, and head off to school for collection. After all, I'll have a wonderful little chap with a big hug waiting for me - I could probably do with that.  



4 comments:

  1. I can understand how you felt lovely. If there had been no concert, then fine, or a concert but for you to know that David wasn't going to take part that day, fine, but to turn up to a concert for him and for him not to be there must have been unsettling. The way that you describe there not being anything there in that room for you - I can totally relate to and it would have made me feel sad too. I hope that all went well the next day and that you both enjoyed it. Thank you for linking with #DreamTeam x

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  2. Oh darling :( I would be the same, it's not wonder you are upset by it. Lots of love and thanks for linking up #bestandworst

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  3. You do not have to wonder why you were upset. I think most any mama would understand you and your feelings right off the bat after reading your description of the events leading up to the Christmas show.

    Although every child is different and I do not have personal experience with autism, I can relate to that feeling of being let down.

    I have 4 year old twins, a boy and a girl. My daughter has this extreme self-consciousness now where she hates the idea of a group of people looking at her.

    For Thanksgiving, her class practiced tirelessly a special "pow-wow" routine complete with Indian headdresses, handmade drums, faceprint, songs, the works. We talked about how this would go in advance and she decided that she did want me to go.

    When the performance rolled around, she was the only one who "processed" into the room and beelined for her mom as soon as she laid eyes on me. Despite her teachers' gentle pushes for her to rejoin the class, she declined and stayed in my lap watching her classmates for the entire performance. She looked miserable and I felt miserable for her.

    I felt a tug inside and wondered why at the time. But looking back, I think I wanted her to be able to throw herself into an experience like that and enjoy it like the rest of her classmates. I hate seeing how the elements of discomfort and shyness color how she lives her life as it did for me for so many years.

    I've since resolved to talk through these situations in advance even more than I already have and try not to project my own feelings onto her. With that and changing MY expectations of what will likely happen in different scenarios, hopefully she can begin to become more comfortable in her own skin.

    Thank you for sharing your story. xxx #DreamTeam

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