I sometimes feel a strange sense of guilt, or at least dis-ease, about Penny. It's not what you might think. I'm about as comfortable as I can imagine being with a child who has Down syndrome, and I think my kids are too. (The other day, I was explaining that some athletes from the Special Olympics practice we were about to see might have Down syndrome. Penny did a fist pump in the air and … [Read more...]
To the New Mother of a Baby with Down syndrome
To the new mother of a baby with Down syndrome Meeting Her I remember the feeling. That first meeting with another family farther along the path of Down syndrome after the birth of our child with the same diagnosis. I remember fear and fascination. Fear of the child four or five years old who's eyes mirrored my baby's. She shouldn't have looked like him. I birthed her. She should have … [Read more...]
Full or Functional
She meant well when she asked. “How high-functioning is your daughter?” I didn’t think much of it as I replied, “Oh, she’s very high-functioning. Her intelligence is at an age-appropriate level. The developmental delays she experiences are related to motor skills. She can’t jump or run very well. She can’t whistle. That kind of thing.” “That’s great,” she said. And then the conversation moved … [Read more...]
Those Who Have Come Before You
We are all on a journey. A journey with our child who has a disability. I know when we first received Charlie’s autism diagnosis we scrambled to learn what this autism thing really was. We searched ways of how to help him. We searched how others were coping. I think books are great, articles are awesome, and conferences are amazing but I think the greatest thing I have found is finding others that … [Read more...]
Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs
Tomorrow's a 'no' day, a needed reminder in parenting kids with special needs Our daughter Polly will turn seven years old Friday. She is fully included in the first grade of our neighborhood school, and is making expected progress according to her Individualized Education Plan formed by a team of teachers, therapists, and her parents because of her diagnosis of Down syndrome. Polly is thriving … [Read more...]
Mothers Share Truths Learned Because of Down Syndrome
Today is World Down Syndrome Day! March 21, because people with Down syndrome have 3 copies of the 21st chromosome. Many use this day as an opportunity to educate, or spread awareness of the different challenges that these individuals face. It is a day set apart to celebrate our kids, siblings, cousins, friends, and neighbors with Down syndrome. Celebrate Down syndrome? Yes, I know, it might … [Read more...]