“Christmas time is hard in the life of a special needs family. It’s hard, sad, painful, yet magical and full of joy at the same time.”

 

I recently read this Facebook post from a mother in the special needs community. It resonated with me, since I also lived that way—as the mom of a child with a medically complex, neurological condition, trying to figure out how to exist in a world that doesn’t understand our reality.

This year, my family is celebrating a more typical Christmas with our two boys. Just last week, we drove around town looking at lights. I was never able to do this with our daughter, June.  My oldest son is now big enough to help decorate the Christmas tree, also something June could never do.

For me, these “traditional” joys were a long time coming, and I’m really enjoying them. But, as this author points out, the holiday season with June was magical, too—though it took me some time and some work to recognize it. When June was alive, I found that focusing on small things I could do to participate in the season—in our own way—really helped and enabled my husband and me to notice and feel the wonder.

It’s important to look for the good in our lives in general, and this can be especially important to practice during the holidays. Try to focus on something good, and if that’s too difficult, try to put a positive spin on whatever is bothering you. A fellow mom told me she liked to think of her child as “medically marvelous” instead of medically complex. I thought that was a powerful, minor language change that absolutely improved her outlook on her daughter’s health issues.

Here are my Top 6 Tips for Finding Joy This Holiday Season:

1) Focus on What Works for You and Your Child

At this time of year, it’s really important to take stock of what your child can handle—and what you can handle—and then make plans that match your needs, as they are, not as you wished them to be.

Don’t say “yes” to a party to please someone else. Or, if you really want to get out of the house, go ahead. Skip the holiday-card-sending ritual if you want to. Or send whatever image works for you. Skip the big family trip, if it’s not right for you. Or ask family to come visit you.

It may seem like there is only one “right” way to enjoy the holidays, but, we each create our own holiday plan that works for us, even if we don’t realize it. If you look around, you’ll notice that everyone is doing their own thing, those with typically developing children, multiple children, and people with no children at all.

2) Create Holiday Hand and Footprints with Your Child

There are a lot of fun craft projects to do with a hand-and footprint. One of June’s therapists always brought holiday crafts revolving around these prints, such as a picture of a deer made from June’s hand and footprints and a clay ornament imprinted with her feet. She even created a “flower” by cutting out June’s handprints and planting them in a pot. Those always felt special. They were something June could do and doubled as a sensory activity.

You can buy hand-and footprint kits on Amazon, or at Target, Walmart or even on Etsy.com. Another idea is to use do-it-yourself clay molding kits for hand/footprint keepsake pictures or ornaments. You can also pick up non-toxic paint at a local craft store or on Amazon, pour it in a plastic plate, and let your child rub her hands in the plate and then press them on paper or a canvas for an ornament, card or wall art.

3) Invite Santa Home

Why stand in line at the mall? One mom told me that she hired a Santa to come to her house!
I found that so encouraging. You can host your own Santa, invite friends over, turn on holiday tunes, sing along, and take your own photos. You might ask someone you know to dress up or ask a Santa you meet at the mall to make a house call. Or log on Santa For Hire to see who’s available in your area.

4) Let Your Child Be Your Holiday Prep Buddy

As much as I love looking at lights with my sons, I also really enjoyed having June by my side while I was baking cookies for the holidays. I felt like we were truly doing it together. Since I had to be home with her, I decided to use all that home time to make cookies for everyone we knew, and different types: pecan, chocolate chip, brownies and sugar. I baked dozens and dozens of cookies with June in her bouncy seat by my side. I’d have a holiday movie on, while I would mix the flour and sugar, and talk to June. It was something we did together and a way that I particularly enjoyed spending the holidays with her.

If you don’t like to bake, your child might be a decorating buddy, a holiday-card-signing companion or even a holiday music-listening and dancing partner.

5) Splurge on Fun Holiday Pajamas for the Whole Family

While there were many things June could not do during the holidays, she definitely could look adorable in snuggly holiday pajamas. It sounds like a small thing—and it only took a small amount of effort—but I always loved dressing June up in holiday pajamas. She was truly participating in the holidays in her pajamas, and the pictures of Santa on her little arms and legs brought more joy into our home.

6) Connect with Others in a Similar Situation

It’s easy to feel left out or even a little envious of “typical” families during the holidays. (Though as we all know, even the happiest-looking Facebook families have their own struggles.) Connecting with people in a similar situation as yours can be crucial during this time of year, and, for that matter, all year round. You may feel like you’re the only one who has a child with these specific issues, but if you tell your neurologist, social worker, pediatrician, or therapists that you are looking to connect with other families, they can help you find people to talk to.

You can also join a Facebook group for parents of children with special needs, which is an easy way to feel a sense of community. Find a group focused on your child’s diagnosis or symptoms. And don’t be afraid to share your thoughts. Even a short post about some aspect of your holiday experience can be hugely validating to another parent.  You might find that another parent has put words to feelings that you were unsure how to express; reach out to the author and let her know. Parents in these Facebook groups are often eager to connect.

The June Jessee Memorial Foundation has a closed parent group that acts as a safe space to share resources and emotions. Please write to me if you’d like to join at info@junejessee.org.

I feel lucky to have met other moms, in person and online, who’ve shared their realities, and at this time of year, their creative ways to enjoy the holidays.