Guest Post: Special Needs & Free-Range!

Hi Readers! Here’s a feisty post from Ellen Seidman, a New York mom whose blog is Love That Max. She’s also hoping to win a blogging contest at Parents Connect, so if you like what you read, go vote for her here. (Hey, why not help each other out?) Onward! — Lenore


The other day, I was Twitter-ing with a mom of another kid who has special needs, and she asked me how protective I was of Max. I wrote, “Not very. If his NICU experience didn’t kill him, nothing will.” I think I may have shocked the hell out of her, but it’s true.

My little boy, Max, had a stroke at birth. And, yeah, until he was born, I didn’t know that babies could have strokes at birth either. But he did. And it put him at risk for all kinds of terrifying things. We were told he might never walk, he might never talk, that he could have mental retardation, and that even vision and hearing problems were a possibility, because of the brain damage. He could have cerebral palsy, too. A doctor told us we could sign a Do Not Resuscitate if we chose to.

As depressed as I was during that first year following his birth, I went into overdrive doing whatever I could to help him. My husband and I got him therapy up the wazoo. We fed him fish-oil supplements, to feed his brain. We tried alternative stuff including hyperbaric oxygen treatment, which entailed either myself or my husband and Max lying in some claustrophobia-inducing tube infused with 100 percent pure oxygen, to spark dormant brain cells. My husband and I used to joke that we were all going to be geniuses.

Max progressed on his own timeline but, most importantly, he progressed. He walked at three. He said some words at four. At seven, he still can’t quite talk, but his vocabulary is growing and he has a cool iPad app that speaks for him. He has trouble using his hands, but he manages. He was diagnosed with cerebral palsy but it’s mild and it’s just an f-ing label. Max kicks butt.

As focused as I’ve been on therapy, I’ve been pretty relaxed about potential health hazards in his life. I mean, yes, we babyproofed the house, he wears a bicycle helmet when he rides his little tractor and I don’t let him play in traffic or anything. But when he was a baby, I didn’t care all that much if he, say, ate a dustball. These days, I don’t obsess about him catching colds or other icky stuff from other kids. I don’t freak out if he bangs his head. So what if he has McDonald’s for dinner two nights in a row? At least he is getting calories because man, this kid is skinny (when you have cerebral palsy, your muscles burn calories faster). I just can’t worry about the little things that could go wrong, because I have some really big, bad things to worry about.

I have a child who went through hell at birth. He is doing amazingly well for himself. He has his physical issues, but is basically healthy and not medically fragile. He survived a massive stroke. He is a fighter. Just like his mama. — E.S.