Gillian Marchenko’s new book, Still Life; A Memoir of Living Fully with Depression officially launched yesterday. While Gillian is busy doing media and interviews this week, we’re sharing a post she previously wrote for our companion blog, Not Alone.
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 buoy, paddling like crazy in a sea of worry and grief.
When a parent first hears, ‘your child has a disability,’ it can be devastating. For friends and family, it can be a trying time too. Sometimes people end up doing nothing because they aren’t sure what they are supposed to do or how to help.
If someone you love has recently been told about a special needs diagnosis, read on.
5 things friends and family can do to support a loved one with a new special needs diagnosis
- Show up: Sometimes friends and families stay away from loved ones with a new diagnosis because they don’t know what to do. Showing up and letting the family know you care makes a huge difference in their lives.
- Research the diagnosis: If you don’t know anything about the disability, do a little research. If you look on-line, make sure the resource is-to-date.
- Refrain from platitudes and pat advice: If a family is grieving a new diagnosis, the best thing to do is to let them know you care, and to listen. Don’t give them pat advice or minimize their situation with clichés or flippant memorized verses from the Bible.
- Talk to your children: Once you learn about the disability, if they are at an appropriate age, explain the diagnosis to your children. Stigma is broken with educated minds. Explain disability in a way that isn’t scary, and that tells kids that we all are made differently, and that is OK.
- Give tangible help: Bring a meal, watch other children, and visit them in the hospital. Offer gentle, tangible help.Everyone needs it, but especially families in crisis.
After our first special needs diagnosis, some of my friends and family didn’t know what to say or do. But one instance of incredible support stands out in my mind. I remember my brother calling me. I can’t remember exactly what he said to me, but it went something like this:
“I’m not going to pretend I know what you are going through right now, but I went online and found out some things I can do and say to help you.”
He told me that he loved me, and that he was there for me.
That phone call was one of the most precious moments of my life. He cared enough to show up however he could. He cared enough to learn about Down syndrome in order to better support our family. My prayer is that you love and support your loved ones like my brother supported me if you ever find yourself in that situation.
Church4EveryChild 
As a mom of a child with special needs, i very much appreciate this article. Perhaps it would be good to write a follow-up article concerning how a parent who has received a diagnosis can walk along side a parent who has very recently received a diagnosis as I’ve been called to do this over the years, most recently this week. I found what i appreciated were the words that this child is MUCH more than their diagnosis. My experience is that as parents, mostly we were surrounded by medical personnel who treated her as a diagnosis and could only tell us of possible foreboding outcomes–NONE of which came to pass. All this is off-center and robs you of the reality of this child–that they are a great blessing, a great joy, that there are many firsts to celebrate with the child, wonderful memories to make, a world to explore together and much laughter to come.
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Great advice, especially the first one. So often people, not knowing what to do, don’t.
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