• Sometimes, when strangers ask if Max (who’s six) and Sabrina (who’s four) are twins, I say yes. It’s just easier. • It is awesome that Max is trying to drink out of a cup by himself and feed himself, but I get tired of cleaning up the mess. • I do not use Max’s…
Category Archives: Cerebral Palsy
Is it wrong to not hope for the miracle?
As you read this, I am in Raleigh, North Carolina with Max and my husband; tomorrow, we are going to Duke University to get Max a stem cell infusion, using the cord blood we banked after his birth. You’ve probably heard about stem cell therapy. It’s still considered experimental, but there’s no evident potential harm….
Confession: I still get sad when other kids ask about my kid
“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…
I am the captain of this special needs ship
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…
When friends say painful things about your child
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
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
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?
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
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…