building a community for my boy, step one – moms at the school
I am struggling to build a community for my little boy.
It amazes me how scared adults are of a three year old who is 31 inches tall and has the face of an angel.
I went to school to pick up my older daughter. Aaron toddled along beside me, happy to be out to step on cracks in the sidewalk and dig his toes in the playground sand.
The group of mothers standing by the door parted as we approached. Grown women look away, lest they make eye contact with me.
I know they don’t know what to say to me. They are terrified to speak to me because I am a strange creature. I am the mom of a child with a disability.
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I want to tell them that Down syndrome is not contagious. If they dare talk to me, they will not immediately become pregnant with a baby with a disability. I want to tell them that I’m just a regular ole mom, with a bit extra on the side.
My regular mom stuff includes helping with homework, shuttling kids to the mall, making dinners, and doing laundry. My extra mom stuff includes hosting a parade of therapists in my home, sitting on a support group board, taking Aaron to many medical and therapy appointments, and laying awake at night worried sick about his future health and how society will treat him.
Because at only three years old, I am getting glimmers of Aaron’s future. People scared of him because he’s different.
And that breaks my heart right in half.
How do I handle this without becoming neurotic, paranoid or resentful? Am I unconsciously telling people how to treat Aaron…to look away when we approach? Am I so cloaked with concern for him that I push people away?
Only three years into having a child with Down syndrome, I’m finding my way around this new world. Having a 12 year old and a 9 year old, I thought I had this motherhood thing pretty much figured out. But Aaron adds a layer of complexity that puzzles me. I am no longer like the other moms standing in the playground.
When we talk about integration for Aaron, I think I need to be integrated, too. Other moms need to spend time with me to discover I’m not that much different than they are.
Don’t be afraid of us, I want to say. We won’t hurt you.
It amazes me how scared adults are of a three year old who is 31 inches tall and has the face of an angel.
I went to school to pick up my older daughter. Aaron toddled along beside me, happy to be out to step on cracks in the sidewalk and dig his toes in the playground sand.
The group of mothers standing by the door parted as we approached. Grown women look away, lest they make eye contact with me.
I know they don’t know what to say to me. They are terrified to speak to me because I am a strange creature. I am the mom of a child with a disability.
read more
I want to tell them that Down syndrome is not contagious. If they dare talk to me, they will not immediately become pregnant with a baby with a disability. I want to tell them that I’m just a regular ole mom, with a bit extra on the side.
My regular mom stuff includes helping with homework, shuttling kids to the mall, making dinners, and doing laundry. My extra mom stuff includes hosting a parade of therapists in my home, sitting on a support group board, taking Aaron to many medical and therapy appointments, and laying awake at night worried sick about his future health and how society will treat him.
Because at only three years old, I am getting glimmers of Aaron’s future. People scared of him because he’s different.
And that breaks my heart right in half.
How do I handle this without becoming neurotic, paranoid or resentful? Am I unconsciously telling people how to treat Aaron…to look away when we approach? Am I so cloaked with concern for him that I push people away?
Only three years into having a child with Down syndrome, I’m finding my way around this new world. Having a 12 year old and a 9 year old, I thought I had this motherhood thing pretty much figured out. But Aaron adds a layer of complexity that puzzles me. I am no longer like the other moms standing in the playground.
When we talk about integration for Aaron, I think I need to be integrated, too. Other moms need to spend time with me to discover I’m not that much different than they are.
Don’t be afraid of us, I want to say. We won’t hurt you.
posted by foodie suz at 10:57 PM
4 Comments:
As a mom with a child with a disability... I know that. Some people are wonderful and ask questions and praise him, and others look and look away or look at me. And in my mind I hear things they are thinking. But for me I will never be a "falgpole mom" as I like to call them.
But they will never be one of us and I think we are seeing the world in such a very different way thanks to our children. They are missing out.
Yep yep!
Actually, I was *thrilled* with how well the other parents in my mama's group and Ellie's Gymboree classes adapted to us. Ditto the parents at Ellie's (fully inclusive) pre-school.
But out in public? A different story. I shouldn't have to feel like a disability rights activist when I just want to grab a gallon of milk at the grocery.
I am a bit of an activist. But sometimes that's exhausting and I just want to be.
Sometimes I feel we have to be the 'poster child' for Down syndrome. I am totally positive to EVERYBODY about Aaron...and honest about our challenges only with other moms with kids with disabilities.
Is this right? I don't know. I feel Down syndrome has such a bad rap that I need to help 'market' it...
We had a disasterous experience in a regular Kindermusik class, so I am approaching our 'regular' preschool this fall with some trepidation! Glad to hear others had positive experiences.
Hello, My name is Helen Peterson and I am a Kindermusik educator in Minnesota. I was so sorry to hear that you had a bad experience with your son in a Kindermusik class. I have had several children with Downs and their families enjoy our program. I am actually doing some research tonight on how a class like Kindermusik can be a general benefit to toddlers and older chilren. If you want to share, I would be interested in hearing more about your experience.
Helen
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