The holiday season often puts us all in overload, but for families with special needs, it means navigating an emotional and sensory minefield. And, with the best will in the world, extended family can contribute to that- or they can help with it. We all want holidays to have meaning, tradition and joy.
When your little one lives a little differently in the world, you don’t wish for the newest Elmo, you wish for family and friends to get it and to help make the holidays special- even if it’s in a new way.
It’s hard to understand and remember all the pieces that we families with special needs hold. Some things to think about…
Forcing the magic
Many families named their wish that people would understand that their kids don’t always find the magic in the usual places- whether it be spinning the dreidl or visiting Santa. Many parents have had to let go of their own wish for their kids to respond to holiday traditions as they did or their other children do and have had to accept a different picture- it can hurt to renegotiate this acceptance with every push from yet another family member. Try to realize that every kid has a different experience.“Johnny doesn’t get Santa. And doesn’t care,” says Anna, whose 6-year-old has Down Syndrome. My son, who also has Down Syndrome, LOVES Santa… but he loves all jolly, grandfatherly men. He loves our local crossing guard with equal enthusiasm.
Gift-giving can also disappoint, when kids have- or demonstrate- a lack of interest. Sometimes, kids are overwhelmed; other times, they really don’t care. But when the giver is obviously disappointed, parents feel badly, even though they truly appreciate the care their families put into choosing gifts or arranging special experiences. As a visible expression of love and respect, efforts at inclusion matter for the child, their siblings and their parents, but so does acceptance of what truly matters to the child.
“Nick wants the same things at holidays as he does the rest of the time, love and cuddles, someone to dance with him to music, more pretzels and blueberries,” writes Audrey.
Safety issues
Many kids with special needs take off when the spirit moves them. And they take off quickly. “It would be so helpful if people would secure their houses- doors and maybe dangerous basement rooms. We tell people they need to baby-proof, but to remember that he has the capability of a 12-year-old to figure out locks. But they still don’t quite get it, and then he’s running off into traffic or down the street,” says Hannah, whose 8 year-old-son has autism. Ask parents about reasonable interventions to keep their child safe- or be prepared for them to have to follow their child around all day.Dietary issues
Most people worry about weight gain over the holidays. For families with special needs, there may be more immediate concerns, such food intolerances or sensory issues. Some kids exhibit immediate and intense reactions to foods most people ingest without difficulty. Ask parents what concerns exist, or ask for suggestions for safe food. But don’t assume everyone will “find something,” or be offended when the family brings a special dish or meal for their child. And please respect the reality of the family’s experiences- don’t dismiss celiac disease as a fad, or a sensory issue as poor parenting. “My mom thought I was being mean when I stopped him after two cookies,” says Jen, whose child has food sensitivities and sensory issues. “After all, it was Christmas and he was at Grandma’s house.” Trust the parents- odds are very good they’ve spent hundreds of hours and much money in determining what’s safe or in helping their child tolerate even a limited variety of foods.Physical Needs
Please feel free to ask families if there are particular physical issues that you can try to help them address. Don’t assume it’s more polite to pretend everyone is the same, and might not need some special thought. For some families, “normal” days means figuring out how their child will be able to use the bathroom, or get up stairs, in homes that aren’t wheelchair accessible. For others, it’s providing cleared paths for those that are visually impaired. It’s a huge relief when others reach out to think with them, and when the goal is clearly to make the day good for everyone.Food or sleep schedule
Some kids get a little more than cranky when hungry or sleep-deprived. (Remember the Hulk? ) With already irregular holiday schedules, children, and their parents, may be holding onto calm by the skin of their teeth. For kids needing a routine and very clear expectations, the thought of eating a meal at 3 p.m. instead of their usual 5 or 6 p.m. can be incredibly disregulating. Please support the parents if they attend to their kids’ needs separately. Keep in mind that they’re doing it for the whole family’s sake, as well as their child. And trust the parents who insist on a regular bedtime… really.Sensory overwhelm
Create a sensory corner- a quiet area that isn’t covered in glitter or surrounded by candles. Probably a good idea for all children, it’s essential for some. Some kids take matters into their own hands. It took time for me to understand why my son would immediately hunt out bedrooms in whatever house we visited. I finally realized he was seeking a safe space for when he was overwhelmed. Quietly pointing out a corner with books or a TV and naming permission to use it could be the biggest gift of all.
In the end, we all want a little magic to lighten the dark hours of winter. Ultimately, the true magic this season may be when we open our eyes and try to be with each other just as we are.
*All names in this article have been changed*
Ellen Lonnquist, MS, LMFT, is a family therapist at Womencare Counseling Center in Evanston, IL and a mother to two beautiful kids, one of whom has Down Syndrome.
"Don’t assume it’s more polite to pretend everyone is the same, and might not need some special thought".
ReplyDeleteThis Post has moved me to tears. I grieve the very experiences this article describes. Not because I wish my family had more tolerance for my downs syndrome brother. But because my brother was not included in my family except for his birthday once a year on December 23rd. Adam was sent to foster care from the hospital after the doctors recommended my mother not hold the baby so that she would not feel attached to Adam. I'm 57 years old and only just recently had a relative listen to my feelings about the loss I've held secret since I was 12 years, the year Adam was born. At age 12, I was so excited to have a baby brother or sister. I was coming of age as a young woman, eager to play mommy. I told all my friends at school about my soon to be born baby sibling. After Adam was born my friends asked when they could come visit the baby. Feeling the grief as personal shame, I lied and said he was sit in the hospital. When friends continued to ask about my baby brother I'd change the topic and soon stopped talking to those friends.
Perhaps Womencare can help bring grown children of LOST SIBLINGS together to share the sorrow of the event never talked about in families like mine. I will add that for my own story I can say that my family acted as though everything was happy and normal and loving and that Adam not growing up in our house was expected to be understood as normal. But for me personally, I have not forgotten the sorrow of not having my baby brother in my family. Also, I do not blame my family for coping as they did. Inclusion of special need children is not cloaked and kept quiet today like it was in the "separate but equal" efforts in the 1970's.
Deb in Madison
Dear Deb,
DeleteFirst, thank you so much for sharing such a tender and important piece of your life. I'm so honored that you chose to share it in this space. Unfortunately, stories like yours, as you noted, were all too common. Fortunately, as both medical professionals and families are learning a better picture, that loss is less common now. I encourage you to contact organizations for siblings. There are many local Sibling Support Networks across the country... You might check out www.siblingleadership.org as a vehicle to locate them or other information. I have thought about running a siblings workshop, but while I'm working on that idea, I thought it might be helpful to know that there is actually some existing support out there right now. Take gentle care!