5 things to do after you receive 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 the 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 choppy, new ocean.


When a parent first hears, ‘your child has a disability,’ it can be shocking, saddening and scary. If you find yourself in this situation, here are a few things you can do that might help.


1Draw your child close.


Remember she is the same person she was before the diagnosis. “I wish I would have told her that I loved her before all those horrible thoughts rushed into my head,” my friend Kim told me after the birth of her daughter with a disability. I understand. After I heard the words ‘Down syndrome,’ I looked at my daughter Polly differently out of fear and ignorance. I wish I would have remembered that she was a baby first before her diagnosis. More importantly, she was my baby. It took months for this to click for me. Sometimes I still grieve that time lost.


2Don’t Google the diagnosis right away.


In our modern times, a click on to the internet is as natural as brushing our teeth. But with a new diagnosis, hold off. It is difficult to focus on your child if your attention is held hostage by a vast amount of information. If you want basic information about the disability, talk with a trusted source like your doctor or check an up-to-date medical site online. Just don’t go on an internet rampage right away.


3Care for your baby/child.


After having a baby with special needs, an experienced mother offered me sage advice: “Continue to care for her daily.” She meant that I should not shrug off parenting duties to my husband, mom or friend out of grief. “You take care of that baby,” she said. Her theory was that if I stayed away from my child, the grief and shock of the diagnosis would be prolonged. At the time, I was a bit offended, but I now see the wisdom. Changing my baby, feeding her, bathing her and putting her to bed helped me see that she was my child, diagnosis or not.


4Try not to worry.


A new diagnosis brings worry-about your child’s health, the future, money, other children, your marriage, other people. Worry is a dangerous landscape for parents anyway. If left to its own devices, it sucks up our energy and time; two things that are usually in short supply in parenthood.


5 Know there is support.


In the seven years that I have parented kids with special needs, one of the biggest gains from the experience is community. Some hospitals, organizations and schools host support groups for families affected by special needs. Our family is heavily involved with GiGi’s Playhouse. Talking to other families calms fears, provides great resources, and assures us that life is just as good, albeit a little different, with the presence of special needs.

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