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Redefining Independence for Your Child with Special Needs

Jamie Sumner
Special needs mom and author
07/05/18  4:28 PM PST

Freedom, aka independence is a tricky thing. It’s a balance between living your best, most self-sufficient life, while also helping others do the same.

Sometimes, as a special needs parent, that looks like pushing my son, Charlie, to take steps in the gait trainer even when he doesn’t want to, even when he fights it with every hand swat and pitiful look, because I know, I know, it will help him get stronger in the long run. It’s reigning in a little of his free will in the hope that it will lead to more freedom in the long run. Because freedom for him means work. To be independent is a hard-wrought thing. Eating, breathing, speaking, moving…these things have taken intense effort on both our parts to make the magic happen. We have felt every mile of all the milestones.

And yet, the flipside of freedom is the letting go. This is the part where I am not so adept. I can be a mover and a shaker when it comes to my own personal goals (i.e. run x many days a week, eat at least one vegetable a day, get to bed before the sun rises), but when it comes to the freedom that comes from taking my hand off the controls, that is another matter. Coasting is scary. Coasting is letting the road take you where it wants at whatever speed it chooses. And this is the current state I find myself in—letting my children lead the way.

It happened once Charlie’s younger brother and sister turned four. Suddenly, they were full-on people in their own right, and they needed to find their own way to interact with their brother without me. Up until now, scenes between the three of them went as follows:

Me: “Hey, Cora, can you give your brother a book…no, not that one, the one he’s pointing to. No, the other one. Yes! Thank you.”

Me: “Charlie, can you sign thank you? Charlie, sign thank you. Charlie, I will take that book away if you don’t say thank you. Good. Thank you.”

Me: “Jonas, don’t take the Legos away from Charlie if he’s using them. No, don’t say he wasn’t using them. I saw him using them.”

Me: “Okay, everybody, bedtime! Group hug!”

Please note: I am the only voice here. Up until now, I have been the conductor of the train that is our family. But I can’t keep chugging along like this. I can’t orchestrate every interaction between the three of them. It’s the difference between Kool-Aid and fresh squeezed lemonade. They might both quench your thirst, but one is better for your body in the long run. If I want their relationship to be organic, I’m going to have to step back.

I’m going to have to be okay with Charlie sometimes getting ignored because that happens with three kids with or without special needs. I’m going to have to be silent while Charlie works on signing and figuring out how to communicate with his brother and sister on his own. They will need to find their own language amongst the three of them as all siblings do. And I am going to have to watch and wait to see if they pay enough attention to each other on their own initiative.

Lately, I have been watching from the corner of the living room. As evenings unfold, I let myself study my family like a visitor at the zoo. It’s hard to keep my mouth shut. But here’s what I’ve noticed: Jonas loves Charlie with play—puzzles and Legos and books. And Cora loves Charlie with touch—hugs, kisses, hands on his shoulder or his wheelchair. And Charlie does make his thoughts known to them and most importantly, they pay attention. They see him without me circling him with a highlighter every minute of the day. I also see how they fight over the same book and steal food off each other’s plates and take more than their fair share of the blanket during bedtime goodnights. It’s a tug-of-war all around, but it’s so good, so much more natural than my hands hovering over all of it.

I preach and I preach to my kids to be kind, to love one another, to take care of each other, to stand together, and to fight for those who can’t fight for themselves. But the only way I’m going to know if it sticks is if I step back and let them fumble through it on their own. Independence for them is reigning in my own desire for control, so their relationship can find its own organic shape.


special needs parents

Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.

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