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

The constant drip, Perseveration

One of the ways autism elbows itself into a family’s everyday life is via perseveration. Perseveration is one of those words I had never heard before my son Tate was diagnosed with autism, almost twelve years ago. It’s a big word that encompasses a lot of things. To perseverate is to get stuck on something and to be unable to mentally shift gears. It might show up as a single word or phrase repeated over and over, or an action performed over and over. A person might wash their hands repeatedly because they are perseverating on germs. Another might quote lines from their favorite shows on television because those things seem to be running on a constant loop in their head.

Some people with autism have very narrow interests and perseverate on those few things they are interested in. It is different than someone without autism who might be zealous about a favorite topic. A person without autism might have an interest or a hobby they enjoy, but with limits. They can put that hobby away and go back to it at convenient times. A person with autism may become so consumed by the hobby that he cannot put it on a backburner. He cannot stop thinking about it or talking about it easily. It drives him.

While raising children without autism I saw some passionate interests. One of my sons absolutely loved dinosaurs and Legos when he was young. We had many books about dinosaurs and lots of Legos. However, he could put them away for periods of time and find great joy in other things as well. He enjoyed talking about dinosaurs and wanted to learn the names of different dinosaurs but he did not talk about dinosaurs for hours each day. One of my daughters was an avid lover of horses. She could have an intelligent conversation about horses but did not force that subject on all her friends daily.

This is one of the texts Tate sent out.

My son Tate’s interests do vary a little. However, when he finds something he loves he gets stuck on that something, usually for weeks, sometimes months. There is almost nothing we can do to help him focus on anything else but the current topic(s) of interest. Most of Tate’s interests are inspired by the movies he sees. Tate perseverates about movies. He has his own DVD library that is quite extensive. He memorizes the cast and much of the dialogue then uses bits of the dialogue throughout our day. Tate is passionate about movies. About two weeks ago Tate decided he was going to need a video camera so he can make some movies. He put this on his Christmas list and began texting his family members pictures of cameras, not just any cameras, but professional-looking television cameras. Keep in mind that money and the value of things is just not a concept Tate has been able to master. He wants a video camera. He “needs” a video camera. I explained that his iPad can actually do the same things a video camera can. I talked to him about all the movies he’s made in the past on the iPad and how great those are. But no matter how much I talked and reasoned, I got nowhere. 

If you do not live with a child with autism then you might be thinking, “So what? Kids “need” things all the time. You tell them, “No.” and move on.” Kids should not be spoiled, getting everything they want. Oh yes. Remember I raised five children without autism before Tate. I have said, “No. Get over it.” more times than the average mother. But telling a kid with autism that they will not be getting the thing they desire is different on a level you simply cannot comprehend until you’ve been there. The constant drip you have heard from an annoying broken faucet is not even going to touch the constant drip and the anxiety that you will witness when a child with autism “needs” something.

After a couple of weeks of knowing Tate expects a video camera for Christmas and me reminding him over and over that it was not going to happen, I led him to my closet. The constant "drip" was just more than I could continue to live with. 

Long before I walked around with an iPhone in my hand, always ready to capture video at just a second’s notice, I owned a small video camera that recorded on 9mm tapes. It hasn’t been used in at least five and a half years. I got the box off the shelf, wiped a layer of dust off, and plugged that old camera into a wall socket to charge. I found one blank tape. Tate stood next to that camera as it charged holding vigil. He beamed and thanked me for “the early Christmas present.” He assured me over and over he knew just how to operate it as he had used one at school before. The instruction manual, also in the box, is written in language that is way over Tate’s head but no matter. I have little doubt that Tate will have that camera mastered in a few days' time. His movies will probably consist of tours of our home and documentaries about the merits of wearing a hoodie. I can almost guarantee he will be taping himself typing notes and lists using the antique typewriter he has been obsessing over lately. I imagine for a time he will be content. The proverbial constant drip about needing a video camera so he can make movies has been silenced for now, his anxiety turned to joy. I’ll take joy over anxiety any old day. I will enjoy it while it lasts because there will be a new drip starting soon enough for me to deal with.

If you like this post, be sure to check out this one: Typewriters and Texts

Also be sure and take a look at Tate's still photographs at The Photos From Tate's Camera.

Kindness and Mistletoe

I recently entered a short essay in The Mighty’s thankfulness challenge. It received a whole lot more attention than I ever dreamed it would when a representative of People Magazine saw the story and called. My essay described some children who have been exceptionally kind to my son Tate and I thanked them in a public way. Tate has autism and it is hard for him to make friends for several reasons, one being that he just does not understand how relationships work. Tate does not understand social reciprocity but he is making some great gains due to constant and consistent teaching from home and school. A lot of that teaching has come from his peers. They are teaching him about friendship and kindness. I wanted to spotlight those kids for their kindness to Tate. 

Kindness. Most of us know what it is even at a young age. It does not have to be defined in words but it is taught by example. Kindness does not just come naturally to small children. There are always exceptions to the rule, but most children are a reflection of their upbringing. In my experience, usually, the kindest kids have the kindest parents. 

Tate has been blessed with many kind classmates and a few of them have even taken a special interest in him. They eat lunch with him. They go out of their way to speak to him and consider him a real friend. If I had to describe these kids in one word I would probably pick the word, “kind.” So, today when I got a message from a representative of "Newton Kindness" saying two of Tate’s lunch buddies were nominated for a kindness award they offer each year, I was thrilled! But as I read on I saw that this representative also wanted to nominate Tate, and that left me slightly confused. Tate has been the recipient of his peers’ kindness but had he ever really shown kindness to them? He has autism, after all. I thought about it for a few moments. Tate is a good kid. He does not make any trouble. He is quiet. He is not demanding or mean spirited. But, would I use the word “kind” to describe Tate? It only took me a minute or so of pondering and I realized that I had given the word kindness a very small definition. Because Tate cannot DO so many things that the rest of us can he does not always show kindness the same way the rest of us do. Tate cannot show kindness by being a peer model for a classmate who is lacking in social skills but he is a very kind young man. He demonstrates it every day. He gives without expecting anything in return. He forgives easily when he has been wronged and it takes a whole lot to make him angry. His lunch buddies have described him as kind and a good friend who likes everyone. 

It has taken Tate a lot of hard work to get where he is. If you can liken learning social skills to learning to swim, think about taking those swimming lessons in a calm, heated, indoor pool with instructors and floaties. Then think about taking those swimming lessons in a muddy, cold river with a strong current and an instructor that is speaking a different language than you do. It would take so much longer to learn to swim if you did not have all the supports and you did not understand the instruction. When a child with autism is put into social situations they must feel like they are in that muddy river trying to learn to swim against that current. I've been on the sidelines shouting encouragement but I must have blinked and missed the part where Tate learned to "swim." His biggest encourager sometimes does not see the little milestones. 

After my light bulb moment I was a bit aggravated that I had even needed a minute to ponder whether or not Tate could be described as kind, because just yesterday he had shown me just what kindness really looks like. I took Tate Christmas shopping at his insistence. He had less than twenty dollars, earned one dollar at a time by doing one of the only jobs he has mastered, unloading the dishwasher. He was on a mission! He wanted to buy mistletoe and a gift for his brother Levi. As we shopped and talked, he added to his list. He wanted to find something for his three sisters as well. Have you ever tried to shop for four people with twenty dollars?  We got everything he wanted except the mistletoe. I have no idea where to find mistletoe. I quizzed him about why the mistletoe was so important. He finally revealed to me that the mistletoe was going to be his gift to his dad and I. Tate planned to put it up so we could kiss under “the mistletoe.” I was so touched and tickled at the same time. It took him over two weeks of emptying that dishwasher (which is not a preferred activity) to earn enough money for those gifts and he never batted an eye about spending it on others.

Note: I know that the mistletoe has got to be one of Tate's newest movie related interests. He has been watching lots of Christmas movies and has a sudden interest in little details like silver bells and mistletoe. Anyone know where to find mistletoe in the middle of Kansas?

To see the People magazine interview, go here: A Lesson In Kindness

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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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