Thursday, August 17, 2006

drawing some circles for my boy (or, building a community, step 2)

My husband and I sat down to do an exercise in community for our three year old son, Aaron, who has Down syndrome.

We drew Aaron in the middle. Then we drew progressively larger circles around him. The inner circle represents the people closest to him. The last ring, people who are in his life, but who function as acquaintances.

Our circles ended up horribly imbalanced. Aaron’s inner circle contained his dad, me – his mom, and his older brother and sister. Next came people who we knew would help us out with childcare in an emergency.

There were only two people in that circle – my mom and dad, who live 1,400 kilometres away. Oh dear.
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The rest of his extended family fall into two camps: those who care deeply for Aaron and show interest in him (the rest of my family, his Grandpa Barry) and those who do not.

What am I to do with these lopsided circles? Aaron’s community is not flush with supportive members. My mother-in-law suggested we ‘hire someone’ if we want a grandma for him. We actually lost friends, including the woman who stood up for me at my wedding, after Aaron was diagnosed with Down syndrome.

I am beginning to panic.

I have a button that says ‘love makes a family.’ OK, let’s start with that. Aaron has two close friends in the Down syndrome community. I’ll work on nurturing those friendships. I like the moms very much, and endeavour to invite them over for playdates and outings to the water park.

But they also have their own ‘stuff’ going on – worries, health concerns, anxiety over school. My local non-Down syndrome friends number exactly one – and she just moved across the country.

My desperation to fill in my boy’s community is causing me considerable anxiety. Have you seen the movie ‘I am Sam’? The main character, Sam (disability unknown, but he had some sort of developmental delay) – he had a group of friends, but nobody who was willing to care for him. My husband and I sat and watched that movie, our mouths agape, in mounting terror for our boy. I do not want him to be alone.

What am I to do? Continue to nurture our inner circle, yes. Reach out to other friendly souls. Making new friendships start with me but I find making new friends gets harder with age. Maybe mainstream preschool in the fall will help, but I have the sinking feeling I will be the ‘mom with the kid with Down syndrome.’

I look at my boy and I want to weep. He is full of so much joy – I only want him to be accepted for who he is and to be surrounded by people who love him. Isn’t that what we want for all our children?