For parents who aren't ready to celebrate Down syndrome (This is a post author Gillian Marchenko (Sun Shine Down) shares every year in October for Down syndrome Awareness Month. If you are a new parent or a seasoned parent to a child with Down syndrome, wherever you are in the journey today, Gillian is here to tell you it is okay.) I read a blog yesterday from a mother of a child … [Read more...]
Love pushes us to the front of the crowd, reflecting on a dual diagnosis
Love pushes us to the front of the crowd, reflecting on a dual diagnosis I belong to a private Facebook group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has it been? Two years? Although I mostly lurk, the dual diagnosis … [Read more...]
Letting go of self-sabotage on the special needs journey
Letting go of self-sabotage on the special needs journey It took my daughter Polly, who was born with Down syndrome, a long time to walk. When she was around two and a half years old, her physical therapist loaned us a stander; this wooden contraption that looked like it may have been used for torture at some point in the past, designed to strap kids in while standing upright to build muscle … [Read more...]
Where’s my IEP?
Tomorrow morning I will attend yet another IEP (Individualized Education Plan) meeting for my daughter who has Down syndrome. I'll never forget the first one. She was just three years old. I remember worrying about an 'us against them' attitude between the professionals and my husband and me. I was afraid my voice wouldn't be heard. I was afraid I didn't even know what to say. Our family has … [Read more...]
She stands tall; not trying to fix the child I adopted
She stands tall; not trying to fix the child I adopted When we adopted Evangeline from Ukraine in 2009, she hunched. She cowered. She chose to spend her time hidden in little pockets of the house, behind the sofa, under the comforter on her bed. How would I bring her out of her shell? How would I get her to not only make eye contact with me, but to trust me and let love in after two … [Read more...]
10 things TO SAY when a baby is born with Down syndrome
10 things TO SAY when a baby is born with Down syndrome Today is October 1st, which kicks off Down syndrome awareness month. In honor of doing my part to raise awareness about individuals like my two daughters Polly and Evangeline, I'm sharing one of my favorite lists: 10 things TO SAY when a baby is born with Down syndrome. A while back I posted 10 things not to say to a parent of a child … [Read more...]