Saturday, November 2, 2013

Dear Amy, (On Being the Parent of a Special Needs Kid)

I had a really cathartic conversation yesterday with a close friend of mine (and fellow parent of a challenging sensory kiddo). There's nothing quite like sharing a similar life experience—especially one that isn't universal—to make a conversation resonate in a deep way.

During the course of talking together, I was reminded of this video about parenting kids with special needs (watching in full-screen will make it easier to read some of the signs):



Watching it again got me (crying and) thinking about what I would've said to myself in those early days, weeks, and months as we were discovering Daniel's sensory challenges. The thing is, I'm well aware at this point that we're still at the beginning of this journey with Daniel. But I have learned a lot along this path so far, and I have a perspective now that I didn't have when Jaymz and I first started to realize that there was something different about our son.

I wish I could go back and tell myself a few things, and this is the advice I would've offered:

Dear Amy,

Trust yourself. Stand up for yourself. Stand up for your kid. You really do know him better than anyone else. Don't let anyone try to convince you otherwise.

Ask for help. Accept it. Express your thanks. Pay it forward when you're able.

Grieve. You had expectations about what this whole parenting thing was going to be like, and you were wrong. It's okay to be upset about that.

Forgive yourself. All parents have tough days, not-proud moments, and things we wish we could go back and do over. You're human! Show yourself some extra love, apologize if necessary, and move forward. Dwelling on it won't benefit anyone. (It will actually make things worse!)

It gets better. No, really; it does. (And that doesn't mean it doesn't suck right now.) Things will get easier and more joyful (and also harder and more painful) along the way, but it will get better because you will grow into your role as parent of this special child in a way you never could've imagined. You will discover your new normal and it will feel happier and easier (sometimes) than you ever thought it could during the hardest moments.

You've got this.

Love,
Amy

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