5 things you can do after a family you love receives a special needs diagnosis I’ll never forget the moment I was told my baby had Down syndrome. I was sitting next to her incubator in a hospital, holding on to her heel. I remember being pleased because her eyes were open. She stared intently into mine. The doctor spoke and the words ‘Down syndrome’ crashed over me. Suddenly I was alone without a … [Read more...]
Special needs school of life – just keep going
Special needs school of life - just keep going A few Saturdays ago, my husband Sergei and I took Polly and Evangeline, our two daughters with special needs (Polly has Down syndrome and Moyamoya, Evie has autism and Down syndrome) to play soccer in an AYSO program built for families affected by disability in Chicago. A friend from the girls' school told us about it. "Just sign up. It's great. It … [Read more...]
Special needs, siblings, and screw ups
Special needs, siblings, and screw ups “Mom! We just realized that our school play is during the same week as family camp. We had to pull out of the play. We gave our lines to other actors,” my eleven-year-old daughter Zoya looked at me, alarmed, tears forming in the corner of her eyes. This happened last year when we were offered an amazing scholarship to attend a special needs … [Read more...]
Appreciating the pit crew in special needs parenting
Appreciating the pit crew in special needs parenting Before parenting children with special needs... driving alone I know this statement will seem a bit counter-Christian. But sometimes I think all any of us are really trying to do is create mini kingdoms. People need to rule. We need to be noticed. We crave praise. And we need others to notice that we can actually handle our … [Read more...]
You don’t have to be a cheerleader every day
I read a blog one day from a mother of a child with Down syndrome. “I love my daughter but I’m not ready to celebrate Down syndrome.” I just want to say that I hear you. And I validate you. You don't have to be a cheerleader every day. Sometimes in our special needs circles certain types of people are pushed forward as spokespeople. You’ve got the instantly accepting parent … [Read more...]
I don’t know how you do it
"I don't know how you do it." Special needs parents, raise your hand if this a sentiment you hear often. I hear it a lot. And I attempt a charming joke, "Not very well, that's how I do it." Small, calculated chuckles abound for five seconds making my conversation partner and I both feel good. But then the laughter dies, and I look away. I don't think the other person believes me when … [Read more...]