A few years ago, I wore blue because a Facebook friend asked people to wear blue and take a picture for her to show her son. Guess what? I forgot to take a picture! So much for autism awareness!
Did I not care about autism anymore? Hardly. I’m just too tired.
You see, for about a year my son has progressively gone down hill. In August I called a local autism center at the recommendation of a friend. I cried on the phone to the receptionist (Does anyone else do that?). That’s how desperate I was, and it wasn’t even at its worst point yet!
I’ve been living in survival mode for a long time.
When you’re in survival mode, you don’t really care about wearing a certain color shirt. You just care that you have clean laundry.
When you’re in survival mode, you can’t think of things to spread autism awareness. You just want someone to notice that you’ve been missing.
When you’re in survival mode, a good day is a day that no one is physically harmed.
When you’re in survival mode, you’re not planning ahead for walks or runs or bake sales. You’re stuffing chocolate chips in your mouth between referee sessions and crying in the bathroom.
I’m pretty sure I’m not the only one who’s been living in survival mode. Let me say two things.
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If you’re wondering where your special needs mom friend has been, ask her. She may not be a great friend right now. Don’t take it personally that you haven’t heard from her. She may be hanging on by her fingernails.
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If you’ve got the energy to spread awareness and lobby for acceptance, no matter the diagnosis, and you’re decorating yourself and your home, fabulous! But please, don’t look down at other special needs moms who are just too tired for that this year. Why not give them a hug instead, tell them you’ll do their share of awareness this year.
After a year, we have discovered my son has PANDAS. If your child’s symptoms are getting progressively worse, they are changing into a different person, they are becoming violent or self harming, if psych meds make them worse, you may want to look for more information on PANDAS. Start with Pandas Network. You may also want to grab a copy of Childhood Interrupted by Beth Alison Maloney.
What stage are you? Are you in survival mode like me, ready to raise the roof on autism awareness, or somewhere in between?
