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?
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.
read more
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?
posted by foodie suz at 5:49 PM
8 Comments:
Oh this is just a lovely post...I know that feeling, too, of wanting the best for my boy but not knowing how to get it. I don't have any answers, just wanted you to know I have those very same worries.
Hugs... Keep knocking on doors until you fill that circle. I find that the best way to have a friend is to be a friend - it's almost like dating! It takes time, persistence, patience...there are books on teaching your child how to be a good friend - maybe that would help?
I'm remembering one teenage girl with Down Syndrome who volunteered for my neighborhood association doing mailings. She was really, really into her basketball team, and her enthusiam was just contagious. We talked basketball for hours!
Your circles are out there, they just haven't found you yet :) It'll happen, but it is work.
Hey, thanks Jennifer and Amanda M...
Sometimes I think I do my best writing when I'm slightly depressed and all pms'y.
Next time I promise an upbeat, joyous post!
Just relax! Your son is only three years old. I can't believe that you would lose true friends over being the mother of one of those special angels! I'll be staying in touch with you and seeing how you're doing. I'm going to invite you to a really friendly and helpful community where I believe you'll receive lots of answers. Judy's Book Membership is free, and you'll appear on my friends list as soon as you've signed up if you use this link. I'll introduce you to some friends who might have some ideas! Hope to see you there...
You write: "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."
Remember this: all, all, all potential friends in the world have lives full of other "stuff" -- nobody's fresh out of the box. So don't let that discourage you.
Now that your son is getting to school age, you'll be meeting other parents who 'get it,' not necessarily because their lives are just like yours, but maybe other experiences gave them a welcoming, open spirit. It's nice to make friends who don't need basic training about your life and priorities -- and where it feels like a "fair trade" if you help each other out with the kids. Like someone said above, it IS a little like dating! It's hard, but it's worth it. Good luck.
I did that activity for my niece at a seminar and I know exactly how you feel.
And it's not just my family and me, I know my niece really wants friends but she doesn't exactly know how to relate to peers her own age.
::hugs::
My best friend's brother has DS. As soon as he reached school age (oh so long ago in the 70's), his mom, Judy, met other moms whose kids have DS. They became a defacto family for one another. They offered advice, babysitting, and support. The retarded moms (as they call themselves) still function as a group, 30+ years after coming together. When Kerry's father died quite suddenly, the group swooped in enmasse to clean and cook and cry. When Kerry married 4 years ago, the RMs were on the guest list--they're just part of the inner circle, you know?
As your little guy's world grows larger, you'll meet other families, other friends, both for yourself and for Aaron. Some of these families will inevitably be special need families, but others may be your neighbors, people you meet on the playground, or in Target. Good friends and family can come from all quarters.
We are a SN family who homeschools, and moves across the country every 2 years or so. I fret about finding community for the 3-4 months before we move and inevitably, 3-4 months after we arrive, we've developed community and good friends. Homeschooling helps, I think. We interact with the same families frequently, and friendships develop, but really, just regular interaction with any group should yield some close friends, both for you and for Aaron.
Good Luck finding your circle
I cannot believe people are still shying away from Down syndrome. I have met so many great people through my daughters. It amazes me that friendship are lost over something like this.
Those who are meant to be in your circle will find their way to you! It will grow, even if it takes time! I wish you luck on your journey.
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