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?

Losing Language and Finding It

Tate developed language at a young age and spoke in complete sentences, and later lost it. I’ve told that story in other blog posts but I’ll give a quick review. When we began ABA therapy and discrete trial training, Tate was a little older than two and a half. At that time, Tate could still label almost anything but he could no longer speak in sentences. It seemed that when autism stole his ability to communicate, it was selective and it left him with a lot of nouns and a few verbs but no adjectives. He spoke with one word at a time. When he wanted a drink, he no longer said, “Can I have more milk?” but instead he just said, “milk.”

Tate, age 3

Now, this is the really interesting part: Some of his nouns were replaced by other words. The word umbrella was no longer “umbrella” like it used to be when he wanted to play with one, but it was changed to “rain.” The word “broom” was now “sweeping.” Sometimes he could use a phrase, and seemed to be using adjectives, but he really used the phrase as one word. For example, “wolf” was never just “wolf” but was now always, “big-bad-wolf.” The big and bad were not really used to describe the wolf but all three words used together were his label or his noun. It seemed like the autism scrambled his way of thinking. Tate could only think in very concrete thoughts. He was left with absolutely no ability to converse.

Because Tate was our sixth child I knew that most young children do not use pronouns correctly. Tate had amazed us at a very young age by using pronouns exactly as he should. He was able to say, “I want” instead of the “me want” that many small children use. I used to point that out to people so proudly and wonder why he was different than the other kids had been. I am absolutely sure that he could speak in four and five word sentences before he lost language. He could say, “Come, change my diaper” and “I stink” around age two, using the pronouns correctly. And then. It was gone.

As a baby, Tate had picked up pronouns from his environment. I did not spend huge amounts of time teaching him the correct way to speak. An eighteen-month old Tate could say, “I want” but a nearly three-year-old Tate usually said, “Tate wants.” Why was he in tune enough as a baby and toddler to pick up language but unable to learn from his surroundings as a preschooler without intense effort on his part and mine? Where did the pronouns, verbs and adjectives that he had learned previously go? He had to be taught again using systematic lessons. We had to go back to the beginning and start over. 

During the first ABA sessions, the teacher used very simple commands. She did not usually use more than four or five word sentences when she spoke to Tate. She did not use adjectives when giving him instruction. Because Tate’s receptive language was in the twelve-to-fifteen month range by this time, we had to communicate with few words. The more words used in a sentence, the less Tate got out of the sentence. During the discrete trials the commands were, “Do this” or “Build like this” or “give me” or “show me.” This seemed strange to me in a way. We were trying to build his vocabulary, not limit it. I remember telling the therapist, “But he could say, ‘this is delicious’ when he was just a baby and now he can barely talk!” I wondered why we weren’t trying harder to add words instead of limit them.

This was the answer I was given: We were going to build Tate’s expressive language by having him repeat sentences adding one new word each time. For example, when Tate said, “want milk,” I would say “want milk please.” Tate had to repeat my words before he got the milk. After he repeated my words, and as I was handing him his cup, I would say, “I want milk please.” This time he was not required to repeat my sentence but he usually did. We used this technique constantly. He started using real sentences and they began to lengthen. When Tate labeled something, then I repeated the word with an adjective or a verb attached. If he said, “truck” then I said, “big truck.” If he said, “frog” then I said, “green frog.”  This went on all day long every day of the week. Tate regained adjectives, verbs and adverbs. The progress was amazing. Sometimes we stalled for days but other times he added words by the dozens.

Some days were huge for us. Right after Tate’s third birthday in October, I took Levi and Tate out to lunch. Tate marched right up to the counter, looked at the woman taking orders and announced, “I want a cheeseburger please.” I nearly cried for joy. There was a day soon after when we were riding in the car and Tate called my attention to a school bus in the lane next to our car. Tate rarely called my attention to anything so I was shocked. He had never mastered joint attention, even before his regression. The bus was a yellow van. Tate was used to seeing the long buses that his siblings rode so he was confused by the size of the bus. He said, “Look Mom, a little bus.” We had been working that week on big and little and it was clearly getting through. He was generalizing what he had learned at the table. At that time we had only been doing our forty hours of discrete trial a week for about four months. And this is why I so strongly believe in ABA therapy and discrete trial training. Tate was regaining language almost as fast as he had lost it.

I should probably be clear about something because this comes up a lot. Some of you always want to know: Did Tate develop autism at age two? Is that why he lost his language? Tate already had autism. He was born with it. I know this. He had a lot of quirky behavior before he lost his language. He may have had such a huge vocabulary BECAUSE he had autism. I don’t know how autism works. Some kids never gain language. Some kids get it and lose it. Tate’s regression is common in children with autism. I don’t believe his shots at eighteen months caused autism. I didn’t drop him on his head at age two and cause the autism. There was no tragic event in his life. Tate was “different” from day one. I didn’t know what it was called or why he was different but he was different long before he spoke his first word and long before he lost the words.

Other posts about language: What brought you here? and Speaking Tate's Language

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What is discrete trial training?

As soon as I discovered that Tate had autism, I began researching treatments. There are so many ideas out there. I wanted to find a treatment that was proven to have results. I wanted a “cure” for autism. I read the book "Let Me Hear Your Voice" by Catherine Maurice. In her book she told of the huge differences between her children before and after the therapy she provided. I wanted recovery for Tate! The only research based treatment I found was called Applied Behavior Analysis (ABA) therapy. This was the same therapy that Maurice had talked about in her book. The initial research was done by Dr. Ivar Lovaas and published in 1987. Lovaas had made great gains with the children he had worked with.  “Best practice” was 25-40 hours a week of discrete trial. Discrete trials are well-defined tasks with a beginning and end. Big tasks are broken down into small steps and are taught systematically. The end goal might be for a child to be able to recognize and match shapes, but it would be broken down into very small pieces. It might start with the child holding a card that had a black circle on a white background. The teacher would give very simple instructions, often just one word like “match.” The child would need to match the card he was holding to a card in front of him. There might be only two cards in front of him at first: one with a square on it and one with the circle that matched. When he mastered that task, a third card would be added to the table, then a forth card, making the task harder. When the child was able to match the circle correctly after five consecutive trials, the task might switch to matching squares. After all the shapes had been mastered, the teacher might introduce matching a blue square to a red square, showing the child that shapes were still shapes, no matter what the color. After switching colors and mastering several shapes in a variety of colors, we might try having the child match a three-dimensional shape, like a square block, to the card with the square or a ball to the card with a circle. There would be many small steps mastered so that the child with autism could see the much bigger picture. All these kinds of things are learned by the typically developing child during his regular play. It doesn’t take hours of sitting with a teacher to learn simple concepts. This discrete trial method of teaching is how Tate learned almost everything. It took many hours and it was tedious. The end results were worth every minute we spent doing these discrete trials. 

In my constant search for ways to help Tate, I read of many therapies that did not have research to back them up. I read about diets, vitamins, use of steroids, holding therapy, animal-based therapies, music therapy, and several other things. I was willing to try almost anything to help Tate, but nothing had research results behind it except the ABA. I do believe some of the other things help some kids. Swimming with dolphins would be a dream for a lot of kids and it might even help a child with autism in some ways but it is not a valid therapy in my mind.  Music therapy would be very valuable to the child that likes music as well. I know it would not have gotten the results we got with ABA and discrete trial though.    

I have had a few people try to convince me to take Tate off milk and wheat. There are about a dozen foods Tate will eat. If I took him off milk and wheat then there would be almost nothing left for him to eat. I know Tate well enough to know he would probably go for days without eating before I gave in and let him have his crackers, bread and milk back. If I really thought the diet would “cure” Tate’s autism then I’d throw out every last cracker and piece of bread in the house. The kids that I know on the diets, still have autism, most of them are lower functioning than Tate. They feel better on the diets and Tate probably would too. If you feel better then you behave better and can learn better, I am sure.  I just do not think the benefits, if any, would outweigh the difficulty in our home. There are few studies I've seen and no real research to back up the diet therapies that I've seen.  

When Tate was waiting to be diagnosed by a professional, I sent out a letter to our relatives and some close friends. We didn’t want to make dozens of phone calls, answering all the same questions over and over. I explained what we were going through.  We had already decided we would be jumping into ABA therapy with both feet. I asked my friends and family to support us in our decision and not to buy into all the theories about “cures” they would hear about. There were no cures and only one research based therapy we were going to use. Immediately, I started hearing back from people with the suggestions I had specifically asked them not to give me. I heard: Tate needed to be going to a chiropractor, begin homeopathic treatments, use vitamins, take him off milk, and sign him up for horse-back riding lessons. Lots of people were just sure the government gave grants and all kinds of money to parents to help kids with autism too. 

I am very happy with the outcome of the early intervention program we provided for Tate. I am confident he benefitted a lot from the things we did. I don’t think I will ever look back and say I should have done anything differently. Had I hoped for a complete “recovery” from autism? Yes. Is it realistic to hope for such a thing? Probably not. Did God answer my prayers for Tate? Absolutely! 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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