When I began this Blog, my thought was to share some ideas and perhaps a solution or two from my experience as a Long Time Autism Parent. Since it’s right before Halloween, I’d like to share some of my thoughts about holidays.
Ask anyone with a disabled child, and they will tell you the most difficult time of year is fall. School begins and the holidays approach, commercials bombard us with pictures of the “ideal” family and what we should be doing, buying, feeling, etc. Our “normal” extended family reinforces the idea we will never experience and feel what we should. Our worship community may or may not include us in the celebrations. We’re lucky if they do and if they don’t, we may be lucky anyway.
Schedules are different, food is different and we, as parents, are different in our stress level. Perhaps, we have things under control during the regular year but as soon as the first pumpkin appears in the stores, things go to heck in a hand basket. Grandma insists one little cookie won’t wreck the diet that seems to be helping. The school district takes every holiday–known and unknown–and wrings every day off it can, disrupting the rhythm of the days and the change back to Standard Time doesn’t help either. We may be trying to figure out how to afford the therapist AND Santa this year. As soon as Halloween is over, our neuro-typical kids rev up the “gimme machine”, which doesn’t re-enforce their disabled sibling’s behavior program. None of these things help matters with our kids in day to day living. And we must live in the day-to-day, in addition to getting ready for the holidays.
Our Kiddo is in his 30s and our holidays have evolved into a time we love and look forward to, but that was not always the case. If I had known then what I know now, things would have been different.
One good thing for us has been the “social story” way of managing holidays with someone with autism. For years, I explained what was happening to Our Kiddo as the seasons changed, using pictures, story books and decorations to do so. I have long had–because of my profession as an arts educator–a collection of decorations for every holiday and decorate our whole house. For the last several years, I have put up our decorations, without some of the stories and he has done just fine, acting appropriately for each holiday situation. Seeing the silk wreath of brightly colored autumn leaves means ‘turkey” to him and the familiar jingle bell wreath for his bedroom door means “Christmas” just as hearing carols does for someone else.
Music was important to us at holiday time and we began to seriously collect Christmas music the weekend Our Middle Boy was born. To keep my mind off being in labor, we browsed at a record store and found a Swingle Singers Christmas album. We brought the album home with the baby and the Kiddo settled down and rocked to the music—it was like magic! Our holiday collection of albums and CDs grew and grew and grew. We add to the collection every year and look for unusual things all will enjoy or giggle about.
We celebrate our own holidays with our boys in addition to the extended family events. It was important to us to give our sons a sense of our own family, and having our own holiday traditions helped. Such as, if we are not hosting Thanksgiving, we have “faux” Thanksgiving and we may or may not have turkey. It may be before Thanksgiving or right after.
Many parents struggle with gifts for our kids with autism–what to do, to buy or to suggest. Some are unhappy when Grandma gives what she thinks our children should have instead of what we suggest. I, too, have long struggled but have come to grips with some strategies for looking at the folks giving him gifts. I was delighted when one of Our Kiddo’s uncles gave him a huge tin of gummy bears–something he LOVES. His Uncle F was thinking about what he would like. When Grandpa gave him yet another cashmere sweater, eventho I have told him over and over he is tactile defensive, only wears acrylic sweaters, not to mention he is a slob and needs something that can be washed regularly, I didn’t think about the actual usefulness of the gift. I thought about Grandpa giving him the same gift as all his siblings and cousins, trying to treat him the same way because he is his grandchild as well and that touched me. One of his Grandmas gets toys appropriate for three year olds and I am fine with that. Another Uncle got him a Lava lamp one Christmas and a disco-ball the next–Our Kiddo’s room is groovy! Of all the gifts, my favorites have been from his Auntie C–musical water globes–and he displays them proudly in his room. Even if the clothes can’t be worn, or the toys are not what he likes, I am fine with it because they have thought about him. For so many years, the extended family has not bothered with him because he is difficult or they have to think outside the comfortable box they are used to getting gifts–shopping for him is work. Some still behave that way, thinking no one will blame them for the glaring oversight. But, to ignore Our Kiddo, is to ignore a family member at the time of year we hold the concept of “family” in high regard. I still struggle with this, after so many years because he is my son, he is worthy of note and IS part of the larger family.
Speaking of Santa, all of us have had to come to the conclusion the Mall Santa will not always work for our kids. Our ASA chapter used to hold a holiday party every year and a chapter dad would dress up so we could finally have those Santa pictures. It was wonderful and HE was wonderful and had the patience of Job. Our other kids knew who it was and we have wonderful pictures of them with “Santa”, some very silly, but very much a part of our holiday traditions. We laugh about those parties, filled with pizza and cookies and Santa bringing gifts we brought. It was so much fun and so normal to have a holiday party with Santa.
Many parents have their ASD kids on highly structured diets. It is a real power struggle to have others accept the idea of the diet, whether one is cutting out dairy or wheat or limiting sugar. When others host holiday meals, that’s when the trouble begins. You can ask for the variations, bring the food yourself or feed the kids before you come. In any case, someone will be upset. We have to do what is best for our situation, that particular year. Some years, throwing the diet out the window may be the answer and others, coming after dessert for the gift opening only may work. I can only tell you we’ve done all of the above and then some–I don’t have the answers for what is best myself.
We still use the New Years holiday to center our family, spending it much the way The Hubby and I did when the boys were young. We couldn’t get a sitter for New Year’s Eve one year and spent the evening playing board games and talking about each child, our wishes and hopes for each and plans for the coming year. We started out trying to make a special time from an unfortunate situation and it evolved to include a wonderful dinner, games, movies and everyone enjoys it. The Boys play games with us (sometimes bringing their Significant Others), Our Kiddo watches the Marx Brothers or Fred and Ginger with us and we have a good time, together. It was, and is, the only holiday, all year long, that is truly our family’s holiday. Even if we have plans for New Year’s Eve itself, we try to have “our” time set aside sometime within those few days for this tradition. This has been a way of holding our family together when all sorts of outside factions seem to rip it apart.