But Mom, I’m disabled!
How much should I push my special needs child, wonders this mom.
My mother had Boo in the shops the other day. As usual, she was dragging her feet. Snail’s pace does not even begin to describe how slowly she was moving.

Granny got irritated and told her to get a move on. Boo looked at her incredulously and announced, ‘I’m disabled! What do you expect?’ Naturally, every jaw in the mall hit the ground. This was coming from a kid who doesn’t look a day older than 3. But she’s not 3. She’s 10 – going on 16.

Lately, this has become a recurring theme. ‘I can’t do this. I’m disabled.’ ‘I’m disabled. You have to walk with me to my class.’ ‘I’m not ignoring you, I’m deaf!’ At first I thought, ‘Wow, she’s standing up for herself’, but I’ve since cottoned on. She’s milking it. Or is she?

Real needs versus acting up

It’s a perennial difficulty raising a differently-abled child. As a carer and a mother, how much do you push and how much do you carry? How much is physical and how much is emotional? How much is playing the sick role and how much is genuine? And of course, how much is just plain belligerence?  

I know Boo has trouble walking long distances. I found that out when I tried hiking up Constantia Nek with her. Encouraging and cajoling her up the mountain and down again, I got to the end and headed for the emergency room. She wasn’t milking it that time. So I’m cautious, I’ve got to be, but it’s getting ridiculous and clearly my approach needs to change.

I have spent an awful lot of time explaining to her how she is different and why she struggles to do some things, and maybe that’s what’s brought this about, but I still don’t think it’s wrong. She’s a kid who needs to know why, and certainly not explaining it could make things worse for her – she could blame herself and feel inadequate, when really she is fighting an uphill battle.  

You can do it?

Frankly telling her she can do something is not a helpful approach because sometimes she really can’t. Add to that, like any other kid her age, mom really doesn’t know much anymore. The ‘just try’ approach has had mixed results – having tried and failed a few times, she isn’t biting that one anymore either.

Focusing on what she can do is good for her self-esteem, but when it comes to learning a new skill, she’s reticent about leaving her comfort zone. Kids with difficulties often don’t like moving on. It’s too scary.

An inspiring example

What she really needs is internal motivation – she’s got to want to do it - and that is something I can’t give her. But I think I have found someone who can… Boo recently met Chaeli Mycroft and got involved with the Chaeli Campaign, an NPO that supports differently-abled children. Boo’s been enchanted, mostly because she wants to be as famous as Chaeli.

Chaeli has Cerebral Palsy and degenerative neuropathy but gets around her mainstream high school in a motorised wheelchair – without a facilitator – amongst other things. I pointed this out to Boo when she gave me the line about not walking herself to class. It was her turn to drop her jaw. She let go of my hand and marched off to class, head held high.

I realised she doesn’t need me on her back and she doesn’t need a bubble. She needs a mentor, a role-model, an idol – someone who inspires her, but also faces real challenges and even fails sometimes, just like her. Chaeli does that for her.

Who can do that for your child?

What should you tell a special needs child about their abilities?

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