Watching People Watch My Girl
One Sunday a while ago we took the kids to the park with a couple of drinks, their helmets, bikes and my daughter’s scooter. The weather was sunny but cool and it was the perfect Atlanta day.
My girl has not been on her bike for a very long time. More than a year, maybe two. She’s not so much a fan of bike riding and my husband is not so much a fan of helping her learn. He’s been trying for years but she doesn’t trust the bike, her body or her dad. She reluctantly said with a sigh and an eye roll, “FINE, just bring it then!”
When we got to the park she rode her scooter. She is a slow scooter rider, still again with the not trusting that ground being so friendly if you fall on it and she would know. She spent the first 6 years of her life falling. The first three of those her reflexes hadn’t yet caught up with her so her relationship with the ground is questionable at best.
There were many younger kids zooming past her on big wheels and trikes and bikes and she was largely unfazed. It was very noticeable that other kids and adults noticed her. Luckily on this trip no one said anything like “How old are you, girl?” or “Why do you still have training wheels?” The vision disorders she has greatly impact her balance, coordination and literally how she sees the world. Her eyes rotate slowly right to left and don’t get to where she’s looking until it’s too late to focus on where she’s looking. The newer diagnosed condition means her eyes to tilt quickly, randomly and at different times. So basically, since she’s been born she’s seen the world with little random movements (both eyes tilt at different times) all day, every day, and she can’t turn her head and focus on what she wants to at any given time.
Her dad made a comment to me…something about wondering where he went wrong because the kids have such low confidence. It really irritated me. He should know that the kids have a lot of factors that play into their skill level and in turn their confidence. I am fairly certain he was here the entire time (insert sarcasm).
As parents of the same kids we have vastly different approaches and reactions to their experience. While I have always known this intellectually it never occurred to me that my husband would take her not being able to ride a bike so personally. I just don’t want her teased. I couldn’t care less about what other people think. But he, he truly believes that he could/should have done something different to change the outcome.
So as people were watching my girl and wondering, I was watching my husband watch my girl. I was wondering when he’ll let go of the pain.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I feel her visual pain and I sympathize with what she will go through as a child and adult.
Maybe I feel it differently because I see it through eyes that worked in a way that was considered 100% normal before.
To have to deal with so many eye issues now.
But as a parent, I also see the frustration of your husband that feels so misplaced. He seems to have no way to express his surplus emotions like you do.
It’s hard to hurt for your kids.
What is the name of her visual disorder? If I may ask? My daughter is 3 and has had balance issues and physical delays pretty much since birth. She still walks into walls and doesn’t have good balance. We took her to the pediatrics eye Dr and he said she has lazy eye. She now wears glasses. She gets physical therapy through school. I’m still looking for answers. I just have this feeling that there is something we haven’t figured out yet.
She has two vision disorders on is called Ocularmotor Apraxia and one is called Torsion. For OMA she lacks control right to left and is slow to turn her eyes/read, etc. For torsion, her eyes jump at different times like they just tilt up and down at various times.
We all deal with “accepting” differently. I’m the stay at home mom who takes our son to therapies and non therapy activities with kids who have no extra needs. I’m trying to use the words extra needs because all kids are special and it ends up being a stigma. I was once told see the ability not the disability. My husband and I took our little one to the play fountains downtown and kids his age were running,walking and playing independently. I watched my husband get a bit sad and frustrated but reminded him of how happy our lil one is!! Your child doesn’t know any different and I told my husband just that!! I don’t know if any of us can let go of the pain but we can LIVE with it. We can LIVE happy as well!!!
I’m glad you’ve found a way to express and cope with the challenges. I think it’s great if you’re comfortable using “extra needs” because we all have to do what we’re comfortable with. I don’t mind using special needs for our kids.
It’s true, we all just find our own way to live with it! Thanks for visiting!