The Hidden Holiday Grief of Parenting a Child with Disabilities

The Hidden Holiday Grief of Parenting a Child with Disabilities | Houston Moms Blog

If you ask my five year old daughter what she wants Santa to bring her this year for Christmas, she’ll rattle off a list including an Orbeez Foot Spa {thanks a lot, YouTube} and a pink wristwatch. My three year old wants a dinosaur puzzle and Paw Patrol umbrella. And with a few clicks on my Amazon app, their wishes will magically arrive on our doorstep, ready for Santa to deposit under the tree in a few days. Done and done. 

Except…I’m not done. I have another kid to shop for- my eight year old, who doesn’t have a thing on his Christmas list and can’t tell Santa what he wants. My son is profoundly disabled, and for the most part, can’t play with toys like typical children. His favorite {and honestly, the only} activity he enjoys is listening to music on his iPad while chewing on a plastic pool dive ring {the BEST “chewy” toy we have found, and they’re cheap!}.

Every year at Christmas, I face the same predicament :: what do I buy my son who doesn’t play with toys, doesn’t need new clothes, and is content with everything he already has? 

Now, I realize some may find deep philosophical inspiration in my dilemma :: Oh look at that child who is content with what he already has, and is so happy despite all his physical struggles! 

Please, I beg you to understand, this is not inspirational. It’s deeply sad and painful. It’s devastating to wander the aisles of Target for an hour, searching for something, anything my son can enjoy on Christmas morning and walk out only with a bag of socks. SOCKS. 

I’ve spent loads of money over the years on sensory toys. I’ve bought him musical toys, toys with lights, and toys that I know he won’t play with but purchased anyway because I desperately need him to have presents under the tree. But this year I’m stuck. We don’t need anymore “stuff” in our house, and our two younger children are now too old to enjoy the baby toys that developmentally, he could play with if he wanted to. 

We are giving all the kids an “experience gift” this year :: we are taking them to San Antonio and will visit Sea World and Morgan’s Wonderland, a magical amusement park where every single ride and attraction is wheelchair accessible. But I still want my big guy to have at least a few tangible gifts to open on Christmas Day, and I want my younger children to see him receive gifts alongside their pile of coveted items. 

If you know someone who is parenting a child with disabilities, check in with them this week. The holidays can be especially difficult, as we are celebrating the magic of the season while at the same time, grieving what will never be. We have to manage our holiday expectations and also give our children as much as we realistically can. It’s so hard, and we rarely talk about it. 

The Hidden Holiday Grief of Parenting a Child with Disabilities | Houston Moms Blog

Come on Santa, help a mama out here. What will you bring this precious boy for Christmas? 

Are you parenting a child with disabilities? Do you struggle with buying Christmas gifts for them? 

 


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8 Responses to The Hidden Holiday Grief of Parenting a Child with Disabilities

  1. Avatar
    Gene Robinson December 18, 2018 at 10:36 am #

    W are in the same boat. Of course you shop for me! He is growing at an expected rate so I always think clothes. Thank you for this post. Touches my heart.

  2. Avatar
    Brittnie December 21, 2018 at 1:48 pm #

    It’s like you are reading my mind. Thank you for writing this post. Clara doesn’t understand it is Christmas, is perfectly content with her same old toys, and we don’t need one more light up infant toy. It is so hard sometimes! Thanks for spreading the awareness that this is a joyous time, of course, but also comes with mixed dynamics for us mamas of kids with unique needs. 🙂

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    Leatta Workman December 23, 2018 at 1:06 pm #

    This makes me sad. I understand the child not expressing want as being sad for some parents, but not knowing what to get. I can think of so many things. Ceiling light projector. A fan controlled by an adapted pillow switch (even before the kid figures out the switch, they LOVE the accidental “wind in their hair”). Adapted toys (big button switches & toys that move with lights and music)…we have a mariachi band playing bus that I hate, but my kid loves it! A specialized ipad mount to encourage reaching for the screen for cause/effect sequences. A massage mat for a chair…get the kind that can lay under the child…many children love these! Full body bean bag chair. An adapted swing. A custom color/effect when ordering a new wheelchair. A wheelchair add on line an umbrella clip or cup holder. An adapted coat, rain poncho or adapted clothes especially now the Tommy Hilfiger & Target had adapted options that are amazing! A resonance board to lay on. Build a tiny sensory room on a resonance boards. (Google “Blind deaf sensory tiny rooms”. These were created by Dr. Lilli Nielsen for deafblind children but many kids/adults with profound multidisabilities love these!) My list could be endless! My helpers and I have lists of things we would like to try for each of my kids! They are just often so EXPENSIVE. (I think the gift can even be partly for the parent, such as a better monitor, new hoyer lift sling, and home modifications like a new ramp.

    • Avatar
      Doris December 24, 2018 at 9:14 am #

      Hi! Do you have an email or way to contact you? I love your ideas.

    • Avatar
      Renee December 24, 2018 at 10:06 am #

      Leatta, your insensitive reply makes me sad. This post was all about the emotion, feelings, and thoughts that accompany us with special kiddos. It’s not sad that any of us feel this way at Christmas time, it’s normal. While I’m sure you meant well by supplying a laundry list of adaptive toys ideas, it really was just condisending.

  4. Avatar
    Renee December 24, 2018 at 10:13 am #

    Thank you so much for this. My daughter with special needs is my oldest also & I totally relate to everything you said.

  5. Avatar
    Kathy December 24, 2018 at 5:58 pm #

    THIS!!!! Yes…..I feel your pain ❤️ I once burst into tears in Walmart because I was searching for a toy in the baby/toddler area and my son was 8! It hit me me again -all the “normal” milestones he would never have.

  6. Avatar
    Michele December 25, 2018 at 8:28 pm #

    My pain comes from his lack of understanding of who Santa is. He was 2 when his EVENT occurred, not yet old enough to fully understand the tradition. The next Christmas would have started the FUN ones. Now he doesn’t understand Santa at all! For him it is just another day!

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