“How did Max get that bump on his brain?” That’s my best friend’s five-year-old talking. It’s how my friend explained Max’s disabilities to her. It’s Saturday, and we are driving in our car; Max is actually in my friend’s car, because he thought it would be fun to trade, and her daughter is riding with…
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I am the captain of this special needs ship
Written on August 10, 2009 by Ellen
I called up a pediatric hematologist the other day. Max, who’s six, has two blood mutations that increase his risk for clots; they discovered them after he had a stroke at birth that caused his cerebral palsy. We took him to a big-deal pediatric hematologist when he was an infant, who told us we could…
Letting go of dreams for your child, building new ones
A parent I met through my blog, Angi, mom to Elizabeth Ann, mentioned an expert named Ken Moses the other day on a post I did about getting past grief. He’s a psychologist and speaker who helps people deal with trauma, crisis and loss, and father to a child with cerebral palsy. I Googled him…
When friends say painful things about your child
Written on July 27, 2009 by Ellen
It’s Saturday night, I’m in Chicago for the BlogHer conference. A good friend of mine lives there. This is a good friend I tend to avoid talking on the phone with since inevitably she asks, “Is Max talking yet?” “Yet.” “Yet” is a horrible word to use when you’re talking with a parent of a…
Helping people see beyond the disability
It’s Sunday evening, we’re at our favorite local diner. They know us here, but tonight there’s a new waitress and Max has a crush on her. All she has to do is smile at him and he giggles. Max finishes eating, jumps up from the table and proceeds to stroll around the restaurant (it’s one…
Top 10 signs you need a break
Written on July 13, 2009 by Ellen
10. Someone stares at your kid funny and you snap, “Bite me!” 9. You put your child’s braces away…in the fridge. 8. You start fantasizing about snorting your child’s medication. 7. Your most meaningful conversations in life are with the speech/occuptional/physical therapist. 6. You start fantasizing about making your husband snort your child’s medication. 5….
The best therapy that’s not therapy
Written on July 6, 2009 by Ellen
Max absolutely loves being in water so much, my husband and I have joked about buying him a water bed. So he’s in heaven when he’s in the pool. Bonus: the pool toys give him all sorts of opportunities to work his fine-motor skills. As demonstrated here! Max has been getting physical and occupational therapy…
How do you make sure other kids play with your child?
Written on June 29, 2009 by Ellen
We spent this weekend with friends who have three girls, ages three, five and seven. When Max was little, it was hard for me to spend time with friends and their kids—I was always comparing him to them, which inevitably made me feel bummed out. I don’t do that anymore, but lately I’ve been grappling…
A Bill of Rights For Parents of Kids With Special Needs
Written on June 22, 2009 by Ellen
I put this together over at my blog with input from readers, and wanted to share it with all of you here. A Bill of Rights For Parents of Kids With Special Needs We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare…
Do you give your kids chores?
Written on June 15, 2009 by Ellen
I’d honestly never thought about giving Max chores, until a recent conversation on an e-loop I belong to for moms of kids with cerebral palsy. One mom whose son is able to crawl on the floor lets him help sort laundry and put his toys away. She was planning to have him help her maintain…
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