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?

Typewriters and Texts

My fourteen-year-old son Tate has autism. Tate is growing up. There are definitely pros and cons. One of the greatest benefits is that Tate is able to express his opinion and verbalize his wants better than ever before. One of the biggest drawbacks is that Tate is able to express his opinion and verbalize his wants louder than ever before. We have longed to hear his opinion on things for many years but when Tate has an opinion or an interest he is relentless these days. And he knows how to text. Tate’s siblings hear dings and vibrations from their phones several times a week, sometimes several times a day, and some conversations can go on for a long time. There is a new interest in Tate's world this week.  

Tate saw the new Peanuts Movie this past weekend and the Goosebumps movie a couple of weeks before that. There were characters that used a typewriter in both movies. Tate began a dialogue with his older sister about typewriters a few days ago and became convinced he NEEDED one. His sister happened to be the owner of a vintage pink typewriter and loaned it to him. He’s had it in his possession for forty-eight hours and has hammered out note after note, as well as his Christmas wish list. His first love may still be texting but the typewriter has him bewitched right now. He even incorporated the typewriter and notes typed out into a group text with his siblings this evening. Take a look:

The word Tate typed the most in these short videos was "here." Get it? "Here watch me type a word" is what he kept texting them. The campout Tate is referring to in the above text and the following text is one he has planned without any parental consent. He planned one mid-winter last year that never came to fruition and he's held a grudge for ten months as you will see in the text below. Depending on the weather, it may or may not happen again. Tate will not listen to reason at this point and is arguing against the weather factor by assuring us that two hoodies instead of one is the answer to frigid weather. A friend from Texas was over at the time of his list making so he included her.  Somehow he has determined that those without freckles will not be invited into his tent. Your guess is as good as mine on how that criteria factored in. Ironically, Tate does not have freckles. The three siblings he wants to include in his outing do have freckles however. 

Here are some texts Tate sent last week when his camping trip (to the front lawn) was in its earliest planning stages:

Do not feel too sorry for the outdoorsman here. Tate has opportunities over the summer to sleep in a tent. 

Another group text this week from Tate showcased his new dresser. The reason he was asked about naming it is because Tate has named all his siblings' cars and insists they call their cars by name. 

And lastly, Tate has been trying to convince me that he has too many chores around here. 

Nice try Tate. Nice Try.

If you liked this post then you will surely like this one: More Texts From Tate

Tate, Texts, and Tents

One of the things Tate loves to do is to plan camping trips. His idea of camping though is a little different than yours probably. Tate wants a tent set up within a few feet of the house. He wants an extension cord and all his electronics set up next to his sleeping bag. And a tent full of snacks is a must. He’ll spend the evening in the tent and when he decides he’s tired enough to go to sleep in the early morning hours of the next day he’ll be ready to haul it all back in to go to bed. Tate especially loves it if we have a little campfire. He won’t roast hotdogs or marshmallows like the rest of the family but he’ll eat a hotdog bun and be content. A couple of times a year Tate decides it is time for us to have one of his camping experiences. Last year he planned one, long after it was too cold to carry out, and he perseverated for at least a month about us ruining his camping trip because we would not set up the tent due to the temperatures. He still brings it up occasionally. He’ll say things like, “You cannot ruin this for me like you did that camping trip.” Tate holds a grudge a long time.

So, last week when I started getting texts from Tate about camping I began praying for a warm weekend and no rain. As he often does, Tate began his planning by making lists. He loves numbered lists. My friend happened to be over during one of his planning sessions so he included her in the texts with me and his siblings. She is from Texas, thus the Texas reference in this text. 

The references to clothes (close) are probably because he fears I will tell him it is too cool to camp. He's telling me everyone will be dressed warm.

The video clip he sent me was about seven seconds long. He showed me that he had two hoodies on. His hoodie fetish will be fully satisfied. Camping and doubling up the hoodies.... He will truly be a "happy camper." 

It seems Tate is punishing his dad and I for “ruining” the last camping trip and has declared this one will only be for people with freckles. He's been announcing over and over the past two evenings that grown ups do not have freckles. The funny part to me is that Tate has no freckles either. His siblings do though. Ha!

Stay tuned folks and see if we are able to pull off a front yard camping experience for Tate in the next couple of weekends or not. I'd sure hate for him to have two strikes against his unfreckled parents. 

Tate's Toothache and My Pity Party

I try hard to be an encourager. The world needs more encouragers. I especially try to be positive when I am speaking to parents of children with autism who are coming behind me. Those with kids younger than Tate need to know that it is not all doom and gloom after the autism diagnosis. But sometimes it is hard. I was born a pessimist. Pessimism comes naturally to me and “looking on the bright side” is something I have to work at. Think Winnie the Pooh’s friend Eyeore and you will have an idea of the way I often think. I have to fight through that gray little rain cloud that is right over my head. It’s just who I am. However I am also someone who has been able to overcome some of that because of lessons Tate and Sydney have taught me. There really are blessings to be found in the face of adversity.

I don’t sit around and feel sorry for myself too often. I simply have too much to do. But yesterday... Yesterday I had a pity party. In attendance were myself, and Tate from the future. He was with me as I sat and cried. He was a middle-aged man and I was a bent old woman. I was still trying to help him brush his teeth and find his shoes. I was still helping him in all the ways a mom helps her child. Her young child. Her five-year-old child. And he was six foot three inches tall.

My pity party began in the dentist office bright and early Monday morning. We were there because I had “guessed” Tate had a toothache. He cannot / will not tell me when he is in pain. He does feel pain. I am sure of that. On Friday Tate made a few references to teeth. They were out of place and seemed odd. But Tate has autism. Let’s face it. Much of his conversation on any topic is odd. Saturday morning Tate texted me that I should take his brother to the dentist to get a cavity fixed. I thought, “Oh, Tate is trying to make a joke.” He hates dentists and he thinks he’s sort of insulting Levi by saying something like that. It’s Tate’s way of teasing. But then there were several more references to the dentist. By now I should have caught on. And then Tate did something Tate VERY rarely does. When I quizzed him about all the references to the dentist and asked him what was up. He admitted that he MIGHT have a problem with a tooth. He asked for a Tylenol. That’s a pretty big deal around here. First thing Monday morning I called the dental office we use and took Tate right in. I like all the staff there. The dentist Tate normally sees was out and we saw another. There, explaining to the dentist that my son appeared to be a young man but she should probably try to communicate with him like she would a five or six year old, my eyes began to leak real tears. I went on to explain that Tate does not tell me when he is in pain so I have to guess. As the dentist investigated to find the problem, I sat and thought. I remembered that when each one of my children were small I had to be vigilant and know when they were hurting based on behaviors. It’s just what good moms do. As my children aged they could tell me when they hurt and eventually they could take care of themselves. My four oldest children are adults. They make their own doctor appointments and bandage their own wounds now when necessary. They don’t call home to tell me about their minor illnesses. They don’t need me in that way anymore. Tate is not there though. Tate will never be there. Tate will always need me and there will come a day when I am not there. I’m 38 years older than Tate.

My pity party was not just about Tate not growing up on the inside as he grows taller on the outside. It was about me. When my kids were little and they hurt, I hurt too. A mother’s empathy for her children can cause her to hurt physically sometimes. As they aged and they were able to take care of themselves some, my empathy for their pain was not nearly as intense as it was when they were small. Over the weekend when I thought Tate was hurting and he was relying on me to identify the problem and help, I hurt for him. Because Tate is never going to grow much older on the inside and be able to mature like his siblings did that leaves me forever stuck feeling the kind of empathy pains for him I would have for my toddlers.

I love the thought from the Bible about everything having a season. Probably the happiest time of my life was when my kids were all small. But now it is time for them to grow up and for me to enjoy them as adults. They will be giving me grandchildren in just a few years. And I will still have an adult sized six-year-old to care for. Life’s not fair. So yesterday I had an emotional meltdown. Several times in the afternoon I broke down and sobbed for the Tate I will never know. The man he will never become. I felt really sorry for myself.

Today is a new day. His sore tooth turned out to be related to a broken wire and twisted bracket from his braces, not a cavity. It’s fixed and his pain is gone. My worries about his pain are gone and my spirits are lifted. Today I am not sitting with the future Tate dwelling on what will never be. Today I dropped my sweet son off in front of his school and as the car door closed I said, “I love you Tate.” I expected to hear, “I love you too.” Instead I heard, “I know.” As I pulled away I smiled ear to ear, happy that he knows he is loved.

For more about trips to the dentist, click here: Cleaning, Filling and Straightening the Teeth of Autism