This is the time of year when I start to lose it a little. The holiday speed train from Halloween to Christmas is demanding for most families and rife with extra activity and extra stress. But this year, I realize, I am struggling harder and earlier than ever before with the twin emotions of grief and isolation. Hideous, oppressive grief and isolation. One reason for this is that my son—who has SPD, a severe speech disorder, and multiple food allergies—is now four and a half, more aware of the holidays, and (relatively) more able to join in. So we’ve been taking part in the usual holiday activities more than before.
And I’ve discovered a strange phenomenon. The more we try to participate along with the rest of the “typical” world in the holiday traditions—Fall Festivals, Thanksgiving feasts, family portraits, Christmas parties, church services, school programs—the more sad and isolated I feel. I have suddenly realized that when we come out of our special needs bubble, which is heavy on routine and focused on individual progress, and go mainstream in our holiday fun, I often feel anything but included.
It’s important for me to point out that my child shows no signs of sharing my feelings. He has a wonderful time at every event, providing his sensory needs are met (that’s a post for another day). He either has no idea how his experiences may differ from the kid next to him or doesn’t care. He’s happy and having fun, but I am not.
First, by the time we ever get to our holiday event, I am exhausted from the extreme amount of preparation necessary to make sure my child is regulated, comfortable, prepared, and safe. This may include shopping for clothes that feel just right, cooking special food, or sending emails about safe treats and the signs of anaphylaxis. It may mean creating a social story for my son to read so he knows what to expect when we get there. It usually means facilitating last-minute bouncing, spinning, or heavy work to regulate his senses. It always means scheduling and structuring our entire day, from beginning to end, so that I can anticipate and eliminate as many hiccups in our plans as possible. In contrast, I’m pretty sure my neighbor just handed her kid’s coat to him and made sure she had $20 in her purse for dinner later. And that makes me mad jealous exhausted.
Second, I am stressed out! I’d love to chat with other parents at a party while our kids play or relax at a dinner table while my kids eat the potluck fare. I’d be ecstatic to show up for a holiday portrait sitting and not feel compelled to share a list of 15 warnings/tips/disclaimers with the photographer in order to have a snowball’s chance in Mississippi of getting one good picture. (Note: I’ve learned to use photographers who will come to us and take candid shots while we walk around our neighborhood.) I am not the parent watching her kids from afar and enjoying grown-up conversation. I am the hyper-vigilant mom, ferreting out anything containing traces of five out of the top eight allergens. I’m the mom in the bouncy house, helping my child get in or out while praying no one ate a peanut butter cup in there. I am simultaneously watching for an outbreak of hives and the first ripples of sensory overload so I can act swiftly to counteract either one. I am continually negotiating, interpreting, and advocating with and for my child as he interfaces with our community in order to make his holiday experiences positive. In short, I am expecting the worst to happen at any moment, but am working like mad to prevent it, so I cannot coherently discuss this year’s gift exchange or how big my child is getting or where we will be spending New Year’s. And that makes me resentful frustrated stressed.
Third, I am sad. I’m sad my child can’t express with words how excited he is to see your Christmas decorations, but can give you a good laugh (or worse, inspire pity) by hopping, spinning and wriggling like a happy puppy. Yes, he is four…thanks, we think he’s adorable, too. I’m sad my child can’t catch the football with his cousins, but is happy to sit on the sidelines and play in the mud. Perversely, I am sad that he doesn’t seem to notice that he didn’t get to keep his goody bag full of candy. I am sad that he loves every second of the preschool musical in his own way, but doesn’t sing one note along with his classmates. Later, I’ll hear every one of those songs sung nearly word-perfect while he spins the ornaments on our tree. And that makes me depressed broken sad.
It is a victory for my child every time he jumps in and enjoys one of these holiday traditions. Why, then, is it such a defeat for me? The truth is, the contrast between my child and his typical peers, between my family and the typical family, is glaringly obvious to me during these times. And it hurts. When we are in our special needs bubble, I am usually joyful, grateful and relaxed. I am focused on my child’s needs and on his accomplishments. I see them for the miracles they are. I delight in him intensely because he is a loving, brilliant, beautiful creation of God, entrusted to me as a gift. His sweet presence is a well-spring of blessing in my life. I am honored to be his mother and to put on the armor I need every day to fight his battles, to make his meals, to clean his messes, to follow his sensory diet, to stimulate his speech, and to fill his ears with praise and encouragement. This is the life God has chosen for me, and I am grateful.
I still feel all of those emotions in the middle of the church Christmas Festival, but they are too often overtaken by the exhaustion, the stress and the sadness. I feel grief-stricken all over again for my child’s struggles, and I feel very much alone. I look around. Where are my people? Does even one person here get me, get my child, get what this is like for us? Does anyone know the colossal exertion—and the triumph—that our very presence here represents? I know that there must be other families like mine. But I can’t see them. This is the pain of invisible disorders.
Sometimes, I just want one thing not to be hard. Sometimes, I just want to go somewhere, do something like “regular” families. But that’s not reality, and I accept that. I know that many families face far greater challenges and suffer much worse isolation than we. Truthfully, we are blessed with a small company of loved ones who know who we are and who value the effort we make, and the risks we take, to be a part. A few of my family and friends are especially good at expressing this precious awareness, and it never fails to soften the feelings of sadness and loneliness as they genuinely welcome us and honor our struggle with their understanding and acceptance, uncorrupted by pity.
For my part, I need to guard my heart. Life in the special needs bubble is good in so many ways, but community outside of the bubble is necessary for my child and our family to live a rich, full life. This year, I am determined to “lose it” a little less and live it a little more. My feelings of grief and isolation may be natural responses to the inevitable difficulties and comparisons, but it is my choice to gather these emotions to me and wear them like sackcloth and ashes or to let them go by directing my focus to the victories instead of the struggles, the gifts instead of the deficits, and the commonalities instead of the differences.