Christmas with Autism

Christmas time, the most wonderful time of the year! Or is it?

Choosing a Tree, 2015

My fifteen-year-old son Tate has autism. He is excited about the approaching holiday. He does look forward to Christmas, but not for all the same reasons many of us do. 

For many of us, Christmas means family gatherings, jingling bells, shopping, baking, visiting, wrapping, music, colorful lights, evergreen trees, and maybe even snow. The wonderful smells, sounds, and sights are a welcome vacation from a regular routine for the majority, it seems.

But for some of the autism community, the festivity assaults the senses and causes distress. The gatherings are too invasive, the smells and sounds disturbing, the sights unsettling, and the break in routine almost agonizing.

Parents, who long before a diagnosis, may have dreamt of Christmas photos with Santa, trips to seek out the perfect evergreen, and Tonka trucks under the tree, come to accept a different reality. The Santa at the mall terrifies their child, a trip to a tree farm is out of the question, and that Tonka truck is only ever used upside down, to spin the wheels.

There will be no big feast on Christmas day, eaten around a large table, surrounded by family, for the family member with autism. He has a different kind of Christmas. He wants --No. He NEEDS-- to eat in his room. Alone. His cousins ask why he won’t play with them. His grandparents wonder why he cannot hug them. Some relatives raise their eyebrows at the way he’s being so “coddled”. It’s hard to understand if you do not live it.

And then, there’s the gift giving and receiving. Some of the things my own son has asked for over the years are challenging to find. The ring from “The Lord of the Rings” movies is a current wish. A hover-board (that really hovers) like Michael J. Fox rode in “Back to the Future” is on his Christmas list this year. The tablet of Ahkmenrah that brought the displays to life in the “Night at the Museum” movies was once on his list. Of course, I can often find reproductions of these kinds of things and those are sometimes accepted without disappointment. A friend crafted a replica of that magical tablet that brought the museum exhibits to life, and Tate loves it. I am dreading the day he asks for the invisibility cloak from “Harry Potter”. There are some things even Santa cannot do.

Many children with autism are similar to my son and very interested in movies and the props. A lot of kids with autism become very focused on other things. I commonly hear about preoccupations with dates and history, technology, video games, math facts, dinosaurs, trains, super heroes, weather, or ocean life, to name a few.

Some people with autism have interests that are more notable. My own son is captivated by our washer and dryer, but had a love affair with the vacuum when he was small. We had very clean floors for years. Now our laundry hampers are never allowed to become full. I have met several in the autism community who have similar stories about their children and a fixation on household appliances though, so this is not really rare it seems.

 

However, interests can be more unique. Two different people have told me recently that their children with autism have a fixation on ceiling fans, the different models, and how they work. Another has a child interested in rotary dial telephones and their parts. Yet another parent told me their child is interested in lawn mowers, even memorizing the model numbers. One child is enthralled with Boeing aircraft, and ONLY Boeing. A friend in Pennsylvania told me last week that her son is fascinated by elevators. On his Christmas list are elevator parts. He wants button panels and indicator lights. Seriously. His heart’s desire is to have an elevator parts collection. What is a mother to do? Anyone know of an elevator parts graveyard she can visit? 

What are some of the things your children with autism are interested in? How many mountains have you moved in the past so that your child could have that special gift under the tree? We want to hear your stories. 

If you liked this post, you might also like to read about another holiday: When Halloween is not about the candy

Are you dreading the holiday break? Home? Alone? With your kids?

Tate came home from school a little early today because he wasn’t feeling well.  I was happy to go and get him.  It reminded me of something.  There was a time that I prayed some mornings before I got out of bed that Tate would have a fever so I could keep him home with me for the day.  Let me explain:  When Tate was in preschool I was miserable.  He was the sixth of seven and we had never had a child in a preschool program or a daycare before.  I was a stay-at-home mom for the reason that I wanted to spend every minute I could with my kids right up until the day they started kindergarten.  My husband and I even voiced our opinion loudly every time the idea of all-day kindergarten came up in our district. 

After Tate was diagnosed with autism, I did the research and found that best practice therapies for Tate were going to include forty hours a week of applied behavior analysis.  We got busy and hired a couple college kids from our area to help me to fit in forty hours a week of discrete trial training and incidental teaching.  Tate was not able to pretend.  His receptive language was not good.  His expressive language was almost non-existent for a while.  I found out quickly that forty hours a week broken into 5 eight-hour days was not going to be practical, although I kept it up for a while.  Six hours, six days a week wasn’t quite forty but it was a little easier.  It was exhausting.  I saw that I was giving eighty percent of myself to Tate and spreading the other twenty percent of me to the other five children and my husband.  No one complained.  We all knew that we had a small window of time when Tate’s brain was most malleable and the motto here was “Early intervention is the key.” 

When we heard that a spot was open in the well-known Early Autism Program at Kansas University I was both thrilled and sickened.  It was what Tate needed but I felt like it would rob me of my baby.  Looking back I know that autism had already robbed me of my baby and the Early Autism Program would work hard at giving him back to me, but at the time, it was hard to hand him over.  Those poor teachers!  They had probably never had a mother hover like I did.  The large classroom, where Tate would be taught to play with other children had an observation room.  He was surrounded by typically developing peers and he had his own teacher that would help him to interact.  That first month I rarely left the building.  I sat in the observation room for hours.  The small rooms where they took Tate for one-on-one discrete trial training also had an observation room.  I learned as much as Tate did, I am sure.  I watched Tate but could also occasionally catch sight of other children with autism.  I believe there were four or five enrolled in the program.  I was very humbled to learn that Tate was barely handicapped at all in comparison to some of the children I saw.  I learned to count my blessing pretty quickly.  I had been so sure that Tate was the pickiest eater on the planet because he would only eat about eight or ten things.  I met a little boy who only ate pretzels.  Period.  Then there was the stimming.  I wanted so badly to break Tate of his stims (repetitive stereotypic behaviors) but I found that his stims were nothing compared to some.  One boy sometimes came to school with a bloodied head because he liked to bang his head on very hard surfaces.  I had wished that Tate could have conversations instead of just spouting movie quotes and labeling things, but I met several children that were completely non-verbal.  I wished Tate could sustain eye contact for long periods of time.  I met a little girl who would not look into anyone’s eyes for even a second.  I watched kids with autism who could throw a twenty-minute fit, pause for a minute to catch their breath, and start all over again.  Teachers had to rotate in and out as they became tired but the tantrum throwers never seemed to tire.  I learned a lot from all those hours spent in observation.  I was so thankful for all that two way mirrored glass!  It is probably a good thing that they do not have it at the Junior High!

Tate tells me he will be going back to school tomorrow.  Ha!  I will be trying to talk him into telling me he needs another day to recover. 

My three college kids are home for a month.  I am counting the minutes until my three youngest kids are home for Xmas break.  They will be home for 16 days before I have to hand them back to their teachers.  I am so excited.  No alarm clocks, no lunch boxes to pack, no rushing to beat the bells in the morning, no waiting outside at 3:00 in a long line to retrieve them, and no strict bedtimes.  There will be leisurely mornings, no real dress code, lots of playing and laughing and movie watching.  There will probably be a little bit of whining and some sibling arguments to referee but nothing I cannot handle. 

I see and hear so many comments from moms that say they are dreading the holiday break.  It breaks my heart for their kids.  I just do not understand it!  Is it the fighting they do with their siblings?  Then make them stop!  Who is in charge anyway?  My kids fight sometimes.  I make them stop.  Is it the boredom?  Give them something to do!  Play with them yourselves!  It is not punishment for you that your kids need your attention.  I’ve said it many times before and I’ll keep saying it:  If you did not want to be a mama, why did you have kids?  They are a lot of work, some more than others.  Didn’t you know that?  You were a kid once too!  I had a great mama and I want my kids to remember me as a good one too.  Will your kids remember you playing with them?  Will they remember you counting the days until they'd be home for a break or will they remember you counting the days until they'd be back in school and someone else had to deal with them?

Okay, I’ll step off my soapbox.  I’m countin’ the days!

What is discrete trial training you ask?  I talk about it here:  http://quirks-and-chaos.blogspot.com/2012/05/what-is-discrete-trial-training.html

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