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gillian marchenko

Author and Speaker

Archive for the ‘disability’ Category

Special needs and guilt management

Guilt management and special needs

Special needs and guilt management Guilt management and special needs – hard, hard, hard, hard, hard topic. For most parents, guilt is a big part of their lives anyway. But for a lot of moms and dads who have children with special needs, it can be immobilizing. I’m one of those parents. I have two kids with Down syndrome and I struggle with guilt all the time. Am I doing enough for them? Are there other therapies I don’t know about? Why does that mom…

What about us? A sibling to kids with disabilities shares her needs

girls1

  Please help me welcome my beautiful (almost 15 year old) daughter Elaina as she writes about her experience with having siblings with disabilities. Great job, Elaina! I love you!   What about us? A sibling to kids with disabilities shares her needs By Elaina Marchenko Today, my sister Zoya and I watched Polly and Evie, our two little sisters with disabilities, while my mom went out for a haircut. It being summer we do watch our sisters more often, but we don’t really mind….

Love pushes us to the front of the crowd, reflecting on a dual diagnosis

love pushes us, living well with 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 group has become a place of refuge for me. I find parents sharing their…

She lives hard and well, and falls asleep fast

Sun Shine Down Polly hug

She lives hard and well, and falls asleep fast We’re lying in bed together just before she goes to sleep. She has her arm slung over my body. We look at each other. Face to face. Just the two of us. I start singing a song and Polly joins in even though she doesn’t know the words. I sing, and she sings, and her relaxed attempt at joining in without knowing what she is doing and without realizing she should care sends a tickle down…

The importance of sunny soccer Saturdays in a special needs life

sunny soccer

The importance of sunny soccer Saturdays in a special needs life A few Saturdays ago, 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 here in Chicago. A friend from the girls’ school told us about it. “Just sign up. It’s great. It is an hour by the lake front and each child playing has a…