by Lillian Csernica on March 17, 2013
Special occasions at my house are unusual, to say the least. Most holidays involve a family dinner of some sort. This is problematical. Michael can’t eat by mouth. He has a G tube and a Mic-Key button, which means he eats through a tube that goes into his stomach. He’s on a liquid diet of KetoCal, which keeps him in a state of ketosis. It’s our hope that this will prove effective with seizure control. It did for a while at first, but Michael’s medical complications make complete control of his seizure disorder unlikely. If you’re new to the world of seizure disorder and the possible treatments, I highly recommend the book Michael’s neurologist had me read:
Then there’s John. Like many boys and girls on the spectrum, John has very specific preferences regarding what he will and will not eat. I’m pretty sure it’s a matter of texture. He likes what he likes, but thanks to persistent effort and the family stubborn streak, my sister has helped us get John to eat a more balanced diet. He’s allergic to peanuts, but the school is so careful that hasn’t been a problem yet. He would live on McDonald’s Chicken McNuggets and all the fries he could get his hands on, but we manage to keep that down to about once a week. Since I’m mentioning helpful reference books, let me recommend one that did a lot for my understanding of how John experiences the world:
Now as you can see, both of my boys have a peculiar relationship with food. On holidays Michael looks forward to a taste of gravy or stuffing, perhaps a lick of whipped cream or frosting, and in particular something spicy. Holiday foods are typically special, once a year foods, so that means John doesn’t recognize them and wants nothing to do with them. Recently we’ve been able to coax him into eating turkey at Thanksgiving and the pork roast at Christmas. He loves potatoes in almost any form, and he’s pretty tolerant of vegetables in general.
Now we come to the heart of the matter. For Christmas, it’s stocking stuffers. Now that Easter is approaching, it’s the goodies we put into the Easter baskets. What do you give to special needs children who have food sensitivities, restricted diets, sensory processing disorders, allergies, fine and gross motor issues, and Heaven knows what other difficulties? Answer: You do your absolute best to get out there and find whatever they can have! It’s easy enough for me to buy candy and little toys and gifts for John. He can use both hands, he loves chocolate, and right now he’s big on superheroes. What about Michael? Again and again the family will ask me what Michael likes, what he wants, or, more and more often, they’ll send gift cards for Toys R Us or Amazon.com. That’s fine. For Christmas this past year, Michael communicated his wish to go bowling, go to the movies, and take a trip to the Monterey Bay Aquarium again. We’ve gone bowling, and now we’re waiting for the kind of movie that won’t be too overstimulating in the theater environment.
The real trick is finding the little things, the jelly beans and chocolate rabbits and a fluffy duck like one of those long-armed monkeys, the light-up squishy chick and the shiny green Easter grass that will end up all over the place. Yes, I do my best to find things Michael can play with, things he’ll enjoy. The most important point is to include some of those items he can’t eat, he can’t really do much with, just because those items are traditional and they are part of the goodies that all the normal kids get.
No matter what his disabilities might be, Michael deserves his share of the loot. The surprise, the delight, the laughter, the shredding of giftwrap and the taste of the chocolate and the family fun of the board games he loves to play. If Michael can’t get out there and experience the world, then I will do everything I can to bring the world to Michael, especially when it comes to special occasions.