What’s Your Special Needs Parenting Motto?

I have these words on a Post-it note stuck to my computer. Whenever the Post-it gets worn, I toss it, write that phrase out again, and stick it right back up. It is there to remind me not to lose it when I feel like I am not doing enough for my son, Max. And when you are parenting a child with special needs, it is very easy to feel that way. Or to feel helpless about situations you can’t control—or ones you somehow missed, as happened to me this week when I found out that my son had been seated on his school bus in a way that was both unsafe and uncomfortable (he’d been coming off the bus at school limping). Ironic, given the reporting I had done here over the summer about negligent bus drivers and aides. Or perhaps I should say, inevitable.

There is so much I want to do for Max. There is so much I could be doing for Max. Finding new therapy possibilities and iPad apps that will strengthen his body and grow his mind. Advocating for Max, and other kids when possible (I plan to send a very strongly-worded letter to his bus company and our school district supervisor as well, asking them to install a checks-and-balances system for all their buses to make sure aides are safely strapping kids into their seats). Finding new programs and camps for Max. Oh, and yeah, just having fun with Max and enabling him to enjoy life and all that purple/Lighting McQueen/spaghetti (his current obsessions) wonderfulness it has to offer.

My husband recently tried to get Max to attend a Cub Scout meeting. Max hovered outside, not wanting to go in, and I was fine with that because it’s all about baby steps. A friend on Facebook wrote about her own experiences trying to coax her son into a gym for basketball games; like Max, he has sensory issues, and he bawls and screeches. “We keep trying, a few minutes at a time,” she said. Another great motto to live by.

How about you: What motto or words do you live your special needs parent life by?

 

From my other blog:

That gotta-do-more-more-more-for-my-child feeling

Dealing with the therapy guilt

20 more reasons moms of kids with special needs rock 

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  1. [...] What’s your special needs parenting motto? (Parents.com) [...]

  2. by Christine Zorn

    On October 24, 2011 at 8:40 pm

    “Just keep swimming” from Finding Nemo