Monday, December 21, 2015

Hobos, Goosebumps and Wiffle Balls

When my youngest son Tate was diagnosed with autism, he was around two and a half years old. Our story is similar to a lot of others I’ve heard over the years. There was an initial frantic search for services and therapies, years of early intervention that were hard to pay for, then denial that my son would be forever handicapped. Much progress was made and there were hopes of a “recovery” and then finally, there was acceptance.

Some days are a little harder than others. Most days we do okay. A sense of humor helps. A lot. Knowing we are not alone also helps. I like to blog about our experiences in hopes that I can make things a little easier for the parents who are coming after me. Lately I’ve been illustrating some of the things Tate does that may seem a bit odd to others in an effort help people understand autism a little better.

At age fourteen, Tate still sometimes misses things that are very obvious to the rest of us. And sometimes he is sure he understands things the rest of us are confused about when the reverse is actually true. Because Tate sees the world differently than I do I am often learning things from him. I have learned to appreciate his unique take on things.  

Below are a few of the illustrations I have made so you can have a peek into our lives. There are many more to come so watch for future posts. 

He technically knew what he was talking about here.
Tate's tries hard to make jokes. He thought telling his sister that she was not really seeing cows was so funny to him. He sure schooled us on what a hobo is too.

Wiffle a ball? 

This is one of my favorite happenings ever. Tate was so excited to share his discovery.
He sure thought he was helping here. 

Figurative language is often a problem for Tate. 

If only we all said what we really mean...

Goosebumps have nothing to do with geese? 

I learned never to try to teach Tate about figurative language unless there are no distractions.

If you liked this post you might also like: There is no ham in hamburgers.

Wednesday, December 9, 2015

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.

Tuesday, November 24, 2015

My hero: My son's Behavior Consultant

This blog post is long overdue. I have known for years it needed to be written and I have actually started it more than once. It is an intimidating task because I know there is no way I can do this one justice. I am not eloquent enough to find the words to express the things that need to be said here on this topic. But I would be forever sorry if I left this one undone.

Dr. Nan Perrin
I have a hero. I met her at one of the scariest times of my life, a time when I was frantic and panicked. I needed help, someone to tell me what to do. I needed someone to help me rescue my little boy, Tate, and bring him back to me. Because, one day he was with me, participating in our family life, and the next he was gone. Autism had crept up on us and stolen him.

My hero’s name is Nan Perrin. She is a Board Certified Behavior Analyst. She came to our home just days after our Pediatrician used the word, “Autism” for the first time and she has been with us for the duration. She came to us with fifteen years of experience under her belt. She knew the answers to all of my questions. I already knew how to parent but Nan taught me the parenting skills I would need to be a good autism mom.

My hero Nan brought my son back to me. Had we not met her at the time we did, and followed her advice, my son would not be the high functioning young man he is today. I am convinced of it. Nan gets the credit. No one else I turned to had the answers to the questions I asked. No one else had the experience, the time, or was even willing to help me to do the hard work that had to be done. Nan helped me find and train college students to do discrete trial with Tate. She loaned me a library of books and materials. She helped Tate to navigate preschool and later enter public school. She was our team leader at ABA meetings and our advocate at IEP meetings. Nan has asked our public school for services I would never have known existed and she is not intimidated when meetings get difficult. She knows the law.

Tate, aged 3
Nan was Tate’s therapist but never turned me away when I needed her too. I cried on her shoulder plenty. She answered her phone at all hours of the day or night and she never made me feel like any question was too small or too ridiculous to ask. She took my calls even while she was on maternity leave, and even while she fought a battle with cancer. That is dedication.

After a few short years of spending so much time together, I started thinking of Nan as a part of our family and I believe she feels the same. I am not thankful for my son’s autism but I am thankful for some of the people we have in our lives because of autism. Nan is at the top of that list.

Not everyone who hears the words, “Your child has autism” is able to find a hero like we did. Perhaps they live in an area where there are no services available like the ones my son received. Perhaps the waiting lists are long. Perhaps they cannot afford the services. The monetary cost is exorbitant. When a couple considers planning a family, they know there will be costs incurred. They understand there will be food, housing and even medical bills that come with having a child. Some people even start a college fund upon the birth of their baby. But, the average couple does not plan for a tragedy. The average couple does not set aside enough money to provide their child with a costly preschool education, also known as early intervention. We often joked when Tate was small that he was getting his “college education” up front as most of his early intervention took place at the University of Kansas in the same buildings young adults were earning their degree in.

How did we afford it? My husband worked more and more hours. We used our savings. We refinanced our home. We borrowed money. We cut back on things we used to afford ourselves. It was hard but we did it. We are one of the lucky ones. What of the people who cannot do it? What of the hard working people who cannot afford early intervention for their children? Who is going to help their children?

I am convinced that every dollar we put into early intervention was an investment. Had we not been able to do the early intervention or had we chose not to do it, our son would have missed that window of opportunity when his brain was still so malleable. I am convinced that every dollar we spent on early intervention saved many more dollars in the end. Our son will not be as needy or as costly as an adult now than he would have been had we not done all the early intervention.

In this season of Thankfulness and giving, I am thankful for my hero Nan and the early intervention that our son received. I would urge you to help someone who is struggling to provide those services for children with autism.

For more about early intervention, click here: What is Discrete Trial?