week 3: end of school year scrapbook/vision for the future

Here is a photo of V and B walking, which I've made the screensaver on my phone because it makes me smile and feel ever so slightly hopeful for a future when something as ordinary as a walk on a nice spring day might be the norm. You don't have to know that I ask B to do this because I no longer can safely keep pace when he giddily starts skipping ahead, and because this is something they can do together and enjoy equally, a way to spend time, which there is so much of - vast and unstructured and challenging to fill. 

A goal in disability policy/planning is to have people in your life who are not immediate family or paid helpers, but wider community that will spend time and know your loved one. For our cohort this is rare, a dream that is part of my vision for the future when we find or create an intentional community where we all can be accepted and accommodated.

On my list of "what you don't get': Those with mild disabilities have fan clubs: whole communities filled with people who will smile and say hello by name, go out of their way to be helpful and show how open and welcoming they can be.  The rest of us have  cult followings: small tribes of family members, teachers and therapists, and paid help that know and love our kids for who they are, able to appreciate what is special and magical about them while dealing with all that is challenging and difficult.

For V, a good part of this is provided by his school. I'm thankful, yet this time of year it makes me all the more aware of the enormous gap when school is out. (The young woman who cuts my hair yesterday: "It's already mid-June: only 10 weeks left of summer!" with a sort of wistfulness at how short that is. Meanwhile I think "It's already mid-June, and there will be 10 more weeks of summer", with an anxiety and dread at all the time without structure or help.)  It also makes me think of the future life after school, when at 21 he falls off the cliff, and how daunting the task of creating a life where he can continue to be celebrated, to find what we have never had in this surprisingly unfriendly town.  Which makes me all the more grateful and delighted at these end of year events.


Spring concert

V enters through the back door of the theatre, down a hallway of cheering staff. He covers his ears because it's too much on a sensory level, but emotionally, he's happy and proud.  Here everyone is a star.

And when we see him on the stage with the help of his aide and after months of rehearsals, he participates in his class part in the production.  We're so proud because for him it is a great feat simply to be on a stage and not freaking out from all the noise and hub bub. In fact he's enjoying himself and participating fully.  [great video clips which I can't figure out how to get on here right now...]  All of us in the audience cheer and kvell, because we know the hard work it has taken to get here.

Luau party

Next up the BBQ/luau for his after-school program, where he has his weekly social skills group.This more than anything is a vision of what I'd want his/our future to be:  enjoying the camaraderie, engaging in activities and socializing to the best of his ability, but even when not he is comfortable and happy. There are friends/mentors who push him to try badminton, conversation, games, yet understand when he needs a break, laying in the bouncy house looking up at the sun dappled trees, a big smile on his face it's hard to see through the netting. 

End of school picnic

Another perfect spring day for the end of year picnic and annual egg drop. He has no interest but I watch, listening as each name is called as an accompanying hand-crafted object is thrown from the roof.  His aide retrieves his, an egg in bubble wrap encased in a tissue box designed as a guitar. "Look, here it is, it didn't break!" And V takes it from his hand and throws it down on the ground, watching it splatter on the grass.  He never did like eggs, except to break them...
We laugh and let it go. No judgement. No struggle. Just another beautiful day. And I let myself believe there will be many more of them.