Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Surviving the Holidays

The holidays can be a hard time for families of children with special needs.

Running around to visit family, often toting extra supplies with you, talking about the realities our children face and playing the never-ending comparison game when being around other children all adds up to extra stress. Add that to the extra to-do list of holiday shopping, cooking and errands, and the holidays can feel less and less joyful.

Ellen Seidman, who runs the blog "Love That Max," talked with Hope for HIE about how to survive the holidays. 


What is the hardest part for you during the holidays?

For parents of kids with disabilities, one of the hardest parts of the holidays is the disruption of routines (no school, often no therapies, no special programs). That can be unsettling to kids. The other half of that, of course, is finding ways to fill the days. Suddenly, the days are so loooong. Add to that the hustle and bustle of celebrations with family and friends—which isn’t always joyful to some kids—and the holidays can be more uh-oh than ho, ho, ho.

What makes holidays different for families of children with special needs that may be hard for others to understand?

Relatives may not get why our kids don’t want to join in the festivities. But the crowds, din and cheerful chaos can be sensory overload—a dimly lit bedroom can be way more appealing to some kids. Relatives also may not get the meltdowns that can happen as a result of all the stimulation, or the acting out. We’ve all grown up thinking it’s the most wonderful time of the year, and some people have a hard time understanding or accepting that for some kids it’s the most overwhelming time of the year.

How have you adapted your traditions to better meet your family needs?

For years I tried so hard to get Max to eat the holiday dinner with everyone. Finally, I accepted that we’d all be merrier if we created our own tradition. For us that means giving Max dinner before everyone then letting him sit in the living room and watch a movie when the rest of us ate. Then we join him there for dessert. I’ve always set up quiet zones when we’ve gone to other people’s homes, like in a basement or bedroom, where he could hang with his iPad.

What would you tell another family struggling during the holidays?

The holidays come with a lot of pressure to make them THE most joyous occasion for your children. So it can be totally disappointing and downright sad when you have a child who doesn’t want to celebrate in the traditional way. Once again, you are forced to confront how different your child is from the others. But the secret to this, as is generally true of raising a child with special needs, is to find your new normal. Do what works. Celebrate *your* way.


Ellen Seidman will be the keynote speaker at the 2020 Retreat for Hope for HIE.

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