Last week, I attended my “neurotypical” third grader’s Catholic school Christmas pageant. I attended alone because I had help to care for her brother at home, which allowed me to give her my undivided attention.
The pageant, which narrated the Nativity scene, was beautifully performed with costumes, singing, and spoken word. My daughter was a shepherd in the choir. I was proud of the homemade tea towel and twine head gear that I fashioned for her at the last minute, still recovering from a very busy month that included an IEP meeting, several medical appointments, and a four-day work conference out of town.
I was already having the most fabulous time and getting into the Christmas spirit when the little first graders, representing a choir of angels, filed in to perform Christmas carols. Adorned with tinsel headbands, I was smitten. So well-rehearsed, they followed the music teacher’s lead and sang, perfectly in unison, hymn after memorized hymn.
It was all so precious and delightful, and I was beaming with pride that my girl was a part of this heartfelt production, when suddenly….I was jolted to another reality: the Ghost of Christmas Present had arrived.
CHARLIE should be singing with tinsel on his head.
Charlie is the same age as the tinsel-adorned first graders, except Charlie has profound intellectual disability, and while we are not quite sure what he understands, he tends to function at a level of a 1-2 year old. This means he doesn’t seem to care about most holidays aside from the general excitement, glitter, and togetherness of it all. He is mostly nonverbal so can’t tell us what he wants for Christmas. He doesn’t understand what Santa is, let alone sing a song about him. We are not even sure if Charlie knows his own name. Charlie should be in first grade right now, at his sister’s school, not a different school across town which was the only one able to accommodate his extensive medical, developmental, and behavioral needs.
As much of a bummer as it was to have this realization about Charlie’s differences harsh my holiday mellow, something else occurred to me almost simultaneously: I got through the entire dress rehearsal that morning and another 20 minutes of the actual show without thinking about what might have been until that moment. After acknowledging these feelings for a few minutes, I was able to switch back to enjoying the show. In the end, it was a beautiful night.
This represents major progress for me, a sign that I am getting to a good place with the holidays, but it will always be a struggle.
For me, holiday depression and isolation tries to rear its ugly head starting around Halloween, when I catch a glimmer of wistful what might have been emotions while watching the other kids Charlie’s age pick their costumes and trick or treat. My Charlie doesn’t understand what’s happening, and I mostly take him trick or treating for his sister’s benefit. This year, I brought with us his home health aide and behavioral therapist so that I could spend more time with his sister. Neighbors were very warm and accommodating to our little entourage, but I am not made of steel. I felt a pang in my heart with every house we visited, with each door that opened and only one of my children said, “trick or treat.”
I feel it when I see the other kids his age draw a turkey by tracing their hands, unassisted.
It really starts to creep in at Christmas time, upon receipt of invitations to participate in holiday crafts events, tree lightings, and cookie decorating, or when it’s time for my daughter, but not my son, to write a letter to Santa.
Then, Christmas morning, it is inevitable: no matter how positive of a spin I try put on it, or how cheerful I try to be for my daughter, or even how happy I actually am, a familiar wave of grief washes over me, watching him play contentedly with his old iPad while his sister unwraps her pile of gifts and he completely ignores his.
There is no excitement or anticipation. No annual holiday movie marathons. No favorite holiday food. No wish lists, no elves, no Santa, no traditions. It’s all just another day for Charlie.
And then there is the experience of taking my kid to unfamiliar places in general, and on top of that, seeing family and friends that I only see once a year. The party often turns into a mini-scientific and educational conference for guests requesting an update on my child’s conditions, brain surgeries, progress (or lack of progress), and prognosis, all while I am sweaty and exhausted, trying to keep him from peeing on the host’s floor. Merry Christmas to me.
I believe that I am in a good place this year because I have actively practiced certain strategies involving mindfulness, delegation, and general self-care. I am also very fortunate to have many experienced parent friends to lean on, including my friends, Andrea and Lauren, who have children with special needs. I would like to share our strategies, in the hopes that it will help you to have more fun at the holidays, no matter what your challenges might be.
“What gets me emotional about the holidays is whether or not this is our last one together. While we all have an expiration date, it seems so unfair that a child needs to go through this medical mess. I feel these suppressed feelings come to the surface during the holidays.”
– Andrea, a veteran parent of a child with special needs and member of Neurology Parent Professionals
Be direct about your needs
When people invite you to their home and ask you what you need, BE SPECIFIC. Most people really want to help but they have no idea how. My in-laws very thoughtfully asked me for input on how to make their Thanksgiving parties easier on me. We were able to schedule the parties around medication and bedtime so we wouldn’t disrupt his routine. That simple gesture alone took a lot of stress out of our holiday.
“I have always found being direct and setting expectations has been helpful. For example, when RSVP-ing, I mention where my daughter is in her schedule, this is typically her nap time, cranky time etc. just so if behaviorally something doesn’t work out or we’re late they’ve been forewarned. I also ask about the food and the number of people so I can prepare a meal option. Do you mind if I bring my portable highchair? I’ve asked if it’s ok for the wheel chair to come in the house. “
EVERYONE feels overscheduled during the holidays, and it’s even more overwhelming when it takes you twice as long to do the most basic things. It sounds obvious, but don’t feel guilty for saying no to activities that are just too darn difficult. I love Christmas caroling but the thought of pushing a wheelchair in the freezing cold with both kids is not my idea of holiday magic. Instead, ask your local scout troop to host an indoor caroling event at a nursing home or pediatric hospital, which is something everyone can enjoy.
Put your foot down about unnecessary medical procedures, hospital stays, and IEP meetings around the holidays.
Offer to host
“I might have a small family Hanukkah dinner at our house, so at least he is comfortable at home.”
-Lauren, a veteran parent of a child with special needs and member of Neurology Parent Professionals
I know what you are thinking. “No WAY!” Because ain’t no messy house like a special needs messy house. Hear me out. Hosting the holiday party myself means I have total control of everything from the food to the schedule. The whole place is Charlie-proofed. There are no poisonous exotic plants for him to eat. No Ming vase to break. His meds, special foods, safety bed, diapers, and everything else is right there, so I can actually relax a little. Also consider hosting craft or wrapping nights with friends and their kids.
Understand that your presence is your present
Don’t feel the need to be Martha Stewart. You are already Super Parent. You have nothing to prove. I guarantee that EVERYONE in your world admires how you handle your daily routine, even if they don’t tell you or if they behave insensitively at times. I hire someone to wrap my gifts, and get gift cards whenever possible. I stopped sending Christmas cards a few years ago because…there’s just no way. When I visit someone’s home, I hardly ever bring anything that I have to cook. I bring wine, good bread, cheese, or something else I can pick up at the grocery store. If you have a child with special needs, you are probably also on a budget. For the many teachers and therapists in your life, in lieu of shopping for expensive gifts, make a small donation to your favorite charity in the name of the school or therapy center that your child attends.
Make Gift Giving Realistic
“I personally wrap my daughter’s toys in bags with bright tissue to make it easy for her to participate like all the other kids. She doesn’t get the concept of Santa or Christmas or that this gift is for her and I’m okay with that and that’s all that matters. Family members sometimes still wrap gifts in boxes which is difficult for her to tear but I just help her along.”
“I make an Amazon wishlist for my family for Hanukkah, so that he receives gifts I think will be helpful for his development, and/or he might enjoy. I dread the insensitive question, ‘What does he want??'”
Andrea offers a simple solution for what can be a dreaded and exhausting experience. In addition to gift opening challenges, the gifts themselves can pose difficulties. Charlie does not care if he gets presents, and it can be incredibly uncomfortable to watch him not enjoy his gifts in a room full of people with anxious grins on their faces looking for a reaction that he is never going to give to them. An additional complication for me is the fact that I also have a daughter who believes in Santa and would be confused if Charlie didn’t get presents. I usually get around this by having Santa give Charlie the “experience” presents like museum memberships or large, shared gifts like a DIY fort kit to build with his sister (translation: his sister and I build it, and he plays with it, maybe). Ask your child’s therapists what toys they would like her or him to work with and purchase those as “gifts.” Another tip is to buy and wrap gifts on behalf of family and friends and allow them to present the gifts to your child.
Remember: If it is only going to depress you, or completely exhaust you trying to make it happen, don’t do it. Don’t worry about what others think. My litmus test for these situations is, if HE doesn’t care, and his sister doesn’t care, it might not be a battle worth choosing.
One thing I struggle with is my tendency to ignore my daughter at holiday events because my son needs so much supervision in unfamiliar places that are not Charlie-proofed, or because everyone’s asking about Charlie and that’s all I can focus on. Something that’s very helpful is making sure we arrive when her cousins are there so that she can have a great time without as much direct attention from me. I also like to bring a picture that she drew for the hostess so that she’s already getting positive attention the minute we walk through the door.
Get Creative with Holiday photos
“Our Christmas cards will be far from perfect. It will be the best choice of 300. It will contain some adaptive technology so it screams special needs but it will never reflect the emotions of all that was gained or lost throughout the year.”
Many school and mall photographers fail to capture the fabulous Charlie-ness of it all. His last school picture made him look like he had a hangover. I am now stuck with a photo that shows him at his most impaired and vulnerable, and that bums me out every time I look at it. If you want to give photos for the holidays, consider snapping them yourself and making a collage. Chances are, you already have some amazing shots on social media. Or, consider investing in a good family photographer who will take time with you to capture the true essence of your family.
Have a getaway car
Consider taking two cars to the party, in the event that your child with special needs must leave with one parent while the other parent stays with the rest of the family.
Try to ignore criticism
Well-meaning questions are one thing, but let’s face it: some people like to be critical and unsupportive, especially when it comes to other parents’ choices. If you are a person who enjoys making your ignorant opinion known, you are going to have a field day with my kid, because nothing inspires quite so much ignorance as a child with disabilities. My son is on a special, medically-supervised ketogenic diet to control epilepsy. Holidays are a great opportunity for others to vocalize how bad that they think my parenting is for “not letting him eat Christmas cookies.” It’s difficult not to take their comments personally, especially when I spend so much time and energy researching and agonizing over these medical decisions that others so readily dismiss.
I am VERY lucky to have very supportive family and friends, but I still get these questions and comments from strangers, year-round, not just at the holidays. I try to remember that these are the same people who criticized my choices with my neurotypical child as well, for example, my decisions to breastfeed and use sign language. As a parent, you must pace yourself with these people, because you will only get yourself all worked up and, I have found, rarely will you actually get anywhere with your efforts to educate. I find that with super-critical people, it’s often best to change the subject or walk away.
Expect – and Embrace – Meltdowns
“If there’s anywhere new we go I bring a lot of snacks, some fidget toys, headphones, and just pray it goes okay.”
One year, Charlie ate Grandma’s decorative pine cone, and we spent Christmas afternoon on the phone with Poison Control. We can laugh about it…now…
“There are always going to be the disaster moments too, like when you daughter pulls the table cloth and all of the food tumbles to the ground. Laugh at those moments ’cause they are the real memories.”
What are some of your tips for making the holidays more enjoyable with your family member with special needs? Please leave your advice in the comments!