We love the holidays as much as anyone else, but autism presents a few challenges ...
After nearly seven years of being a father of twins diagnosed with autism, I have experienced some "unique" Christmases. Since I married into a family that values Christmas dinner and festivities shared by all relatives at the same distant location in the "country," I have been fortunate to see Santa Claus leave gifts at my place for my children and had the luxury of transporting those gifts afar for the festivities.
Additionally, we cherish a pot-luck style Christmas with my wife and I sharing the responsibilities of shopping, cooking, and safely and carefully transporting the twins, the gifts, and the food to our Christmas rendezvous.
While this may sound like a very Merry Christmas, it doesn't always feel this way. And from observations of my wife, kids, and relatives, I have decided to share these observations and parenting tips for families affected by autism.
1. Punctuality is a work in progress. Look, I understand you can't start the festivities late in the afternoon. But let's face it, a 45-minute drive, attached to finishing up the cooking (I'm deep frying a turkey at your request for God's sake), running behind two kids all morning, having Christmas at home, waking up at 5 a.m. (my kids have no concept of time), and staying up all night the night prior cooking and wrapping gifts after the kids go to bed makes it a little difficult to make it to Christmas dinner at 1 p.m.
2. The boys are busy. Autism is pretty much synonymous for "busy." The kids are busy, and the parents are busy. Since play skills are underdeveloped, anything … I mean ANYTHING … is considered a toy to include a spoon, remote control, your shoes, phone book, your purse, cell phone, etc. At our house we have to lock certain doors, cabinets, and refrigerator. So pardon us while we redirect them and kindly ask if there are alternative locations for your belongings.
3. Gluten free and casein free. While I won't bore you with the details of a GF/CF diet, I will tell you that that we will not offer the kids everything on the "menu" and neither should you. All foods and juices have to be cleared by us first. So to make it easy for you, we will bring the foods and drinks they can have.
4. Eating together as a family is a nice expectation, but … I'm sure you can predict what comes next. I don't want you to get the impression I want to treat my kids differently and not allow them to engage in typical family functions. However, social appropriateness and etiquette are still a goal for them. So when either one of them or both see your tasty cornbread dressing, dinner rolls, blueberry cobbler, macaroni and cheese, etc. and grabs it, we have two issues: Your food taken by a 6-year-old and my 6-year-old with gluten now in his diet. Although they are on the GF/CF diet, they still like foods with gluten and casein.
5. I still love sports. This is for all you basketball-loving relatives watching the games that day. I love basketball with my favorite team being the LA Kobes … I meant Lakers (well, this year he is the team). Please don't be offended if I am not as engaged in talks about the sports. I have learned to use ESPN and my smartphone for all sports updates … kind of like the "Cliff's notes" version of watching the games. I may talk briefly, but I will be a bit active responding to requests of newly learned words like "tickle me", "play with me", and "hug me."
6. We still drink alcohol. My wife and I still have wine, a mixed drink or two, and I may even do a shot of tequila. But here is what I want you to keep in mind. There is no way we can drink any alcohol on Christmas since we have been operating off of maybe five hours of sleep, cooking all morning, playing with kids, long-commute, constantly managing kids here at the Christmas dinner. And later, we have to pack food, kids, commute back, give meds, and prepare kids for bed. I recommend we do shots of Red Bull or Starbucks (caffeinated and black).
7. The best gift for my family is all of you. While nice toys and clothes go a long way for the kids, and while a nice robe and slippers would be nice for my wife and me, we would like more actual involvement or time you could dedicate to getting to know the boys. While you may know a fair deal about them, I challenge you to ask yourself, "If the boys had to come live with me for an unspecified amount of time because something happened to the parents, do I know them well enough to do it?"
No pressure to learn everything about them. But with enough family members honestly and sincerely believing they could care for them not only relieves pressure for us at future holiday events, it alleviates stress and pressure for us when developing a special needs trust for them should something happen to us.
I applaud all parents for accepting the challenge of being responsible for the life of another being they brought into this world, and parenting can be a challenge for all parents. Parents of children with special needs have a different set of challenges that require different sacrifices.
I leave you with this—although the child has the diagnosis, autism, like other special needs diagnoses, is a family diagnosis. Be mindful of what the family needs as a whole so everyone can have a very Merry Christmas.