advocacy

Reacting to negativity

A question was asked on the Pierre Robin Sequence board: As a parent to a special needs child, do you get offended when people ask “whats wrong” when they see a trach or something out of the norm with your child? how do you react to the question?

Good smells

Jessica, Namine, and I were at the mall, doing some shopping, window and otherwise. I could do the typical guy thing and say they dragged me into Bath & Body Works, but it wouldn’t be true.

Standing up for herself

At her end of the year school picnic, Namine made some new friends — but then, that’s never been a problem for her. And I was proud to witness her sticking up for herself.

On advocacy

Who should speak for the disability community? Sometimes I think I don’t give enough conscious thought to advocacy – or to be more precise, self-advocacy. Namine is, after all, only five. But she’s growing up fast (too fast for this parent, that’s for sure), and she must be able to speak about herself on her…

You can’t win them all

You can encourage kids to play together, but you can’t make them get along. Not everyone is willing to learn, to compromise, to share; not everyone is open to the idea that different is not bad.

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