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?

Redirecting the Stim: I'd Do It Again

My fourteen-year-old son Tate has autism and my eleven-year-old adopted daughter has Fetal Alcohol Syndrome (FAS). I blog about them, the things we have done that have helped and the things that have not helped: the lessons we have learned, their siblings, classmates, teachers, IEPs, and many other things that have come with the experience of raising these special children. I do this for many reasons. I hope to help those who do not live with autism or FAS to understand a little bit better what these disabilities look like. I also try to help those who are coming after us so they can draw from some of our experiences, perhaps making their own lives just a little bit easier.

I do not claim to know everything and I often remind people that I am just a mom. I am not a doctor, an educator, or a therapist, and I am not formally trained to help anyone. I just know what autism looks like in my son and what FAS has done to my little girl. I have years of experience to share. The ideas and methods we used are not something I believe must be followed to achieve success. I know sometimes there is more than one solution to each problem we encounter and I know the individuality of a child and their family should be considered. There. This paragraph is my disclaimer. So please no messages about how I’m doing it all wrong or that I'm judging you for doing it differently...

Tate, around the time of his diagnosis

There are some things I would do exactly the same if I were doing things over again. All the early intervention we did with Tate and the Applied Behavior Analysis (ABA) was absolutely invaluable. All the money we borrowed was worth it. I have been told by a few other bloggers that ABA did nothing for their child with autism but for us it was life changing. The advocate we take with us to Tate’s IEP meetings is something else I would point to as absolutely necessary. Tate has had services I would have never obtained without her help. So far no one has steam coming out their ears, right? But wait for it. Some of you will not like what I have to say about stereotypic behavior.

I have often heard, “Every behavior has a purpose.” ABA therapy revolves around this and I do not disagree. ABA also says that the stereotypic behavior serves a purpose of some kind but that behavior can be replaced with one that will serve the same purpose. In other words, "If you eliminate one stim then it will be replaced with another." I found this to be true. Tate still stims but his stims are subtle and they do not keep himself or those around him from learning or engaging in activities or with other people. It took a lot of hard work to eliminate some of Tate’s former stereotypic behaviors but I am not sorry we did it. In my opinion the hand flapping was not in Tate’s best interest.

Anytime I write about this I get objections from a few parents who do not understand why I stopped Tate from hand flapping when he was a preschooler. I hear: “It’s not hurting anyone.” And then there is: “I would never ask my child to stop doing something that was calming/comforting/pleasurable/satisfying to him/her.” Really? Are those statements even valid? What if your child were pulling his sibling’s hair? It is a behavior that he finds satisfying, right? Of course you would stop him from doing that because it hurts another person. Would you do your best to stop your child from smearing his feces? You would? Okay. You would want to stop him from doing something that was unhealthy. How about head banging? If he were banging his head on the floor over and over then would you stop him from doing that? You’d block him. You’d put a helmet on him. Is it because it is harmful to him? So there are SOME things you would try to redirect but not others. Hand flapping. Hand flapping is acceptable to you because it is not hurting your child. It is not filthy. It is not hurting a sibling. Perhaps your child can learn while he is hand flapping. Mine could not. When Tate hand flapped it did hurt him. It consumed him. It kept him from learning. Our goal was to make every minute of his day a learning experience. He could hand flap, fan the pages of a book, wave his cloth diaper in front of his face, stare at his reflection, or run “without purpose” for thirty minutes to an hour at a time. The more Tate stimmed, the more he wanted to stim. The stereotypic behavior itself was reinforcing. It was a habit. The more Tate engaged in stereotypic behaviors the less opportunities he had to engage with his peers. His peers saw the hand flapping and some of the behaviors as odd and they approached Tate less because of it. The stereotypic behaviors were sabotaging so much of Tate’s social and academic education. As difficult as it was to get four and five year olds to look past the stereotypic behaviors, I imagined it would be infinitely harder to get peers in Junior High to be understanding of it. Perhaps Tate would have just "outgrown" the behaviors like hand flapping. Some children do. But some do not. I was not willing to risk it and have to look back and wish I had tried to eliminate them. We replaced the more obvious stims with much less obvious ones that still serve the purpose he needed them for. 

Sydney, age one

Sydney came to us with stims too and I worked hard to eliminate those. Being neglected for the first ten and a half months of her life she spent much of her day rocking. The rocking had a purpose. Children who are neglected find ways to stimulate, and occupy themselves, and comfort themselves. After we got Sydney home and I knew she was provided with all the things she needed to thrive I worked constantly at gently stopping her when she rocked. It did not take very many weeks to stop the rocking. I am so thankful I did what I did as I have seen another adopted child older than Sydney who still rocks. The advice that child’s parents got was to allow the rocking because it fulfilled a need. I feel the need could have been fulfilled in other ways. I could be wrong. I'm not an expert. But in my experience with my children: the longer a behavior goes on the harder it will be to stop.

Some might think I was mean or intolerant. Some might call what I did "tough love." Once a mom who was upset with me for a blog post I wrote implied she loved her child more than I loved mine because she embraced his stimming. She said, "I love my child enough to let him stim." I wish I had said, "I loved mine enough to help him to stop." but I am never good at witty comebacks. There is no doubt in my mind that we all love our children immensely regardless of our position on this subject and others. It does not mean you are a better parent if you let your child hand flap or rock. It does not mean I am a better parent if I stop mine from doing it. We all want what is best for our children. I drew the line before some others would I am sure. Some might draw it before head banging or hair pulling but I drew it before hand flapping and rocking. And I do not regret it. I cannot go back and do it another way to try and see which way worked best. I am glad I do not have to. It was hard work. It would have been much easier in the short term to let Tate spend his days tossing his cloth diaper around and hand flapping. It would have been so much easier in the short term to let Sydney sit in her playpen and rock. But would I have kids as high functioning as I have now? What do you think?

There are a few things I have changed my opinion about and wish I had done differently. I will have a post up about that soon. I had originally thought I would talk about those things in this post too but I am told a post more than 1000 words is too long. So stay tuned…

The Transition to Public Special Education

Tate is having wonderful experiences at school. He likes school and that is so important. But that has not always been the case. Once upon a time, he cried almost every morning before school. School was very stressful for him. He had a lot of needs that were not being met. He could not communicate his needs. Anxiety ruled him. It was hard on him and it was hard on our whole family. Because when Tate is unhappy, we are all unhappy.

When Tate began kindergarten he had come straight out of early intervention. He began Applied Behavior Analysis (ABA therapy) before his third birthday and we aimed for forty hours a week of discrete trial. Incidental teaching was used throughout every waking minute, trying to turn his whole day into one learning experience after another. We were trying to “catch him up” to his peers and get him kindergarten ready. We did the ABA with experts in the field of autism and the price tag was huge.

I knew there might be some issues with the public school immediately. One reason being-- I had called the public school and inquired about their preschool program. I also asked about the district’s ability to provide Tate with some services for our in-home ABA therapy program. The voice on the other end of the phone told me if I had determined ABA therapy was best, I had been reading all the wrong books. I knew ABA therapy was the ONLY research-based therapy at the time. So my first impression of the special education director and the program was not good. I did not contact the school district again regarding Tate’s education until he was ready to start kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional support. It was evident from our first meetings the special education providers and I were not going to agree on what an appropriate education for Tate would look like. It did not get better for a long time. I had set my expectations high and I was sorely disappointed. I was also shocked. Tate has five older siblings and I had NEVER had any complaints in the past about our children’s education. I had a lot to learn about the difference between general education and special education.

Tate at his early intervention program

I had a lot to learn about the difference between private early intervention and the public school’s special education program too. There were few similarities. When I had questions about autism or challenging behaviors while Tate was in early intervention the staff had answers. Those first few years of public education I saw little evidence the ones providing Tate’s services understood autism.

We had some unforgettable experiences those first few years of public education. When Tate was six, one day he used his pencil to pretend. He pointed it at his paraprofessional and said “pow pow.” The para mentioned this to her supervisor. That teacher took Tate to the principal’s office. She asked if the incident should be reported to the police as the school had a zero tolerance for threats. Tate was six. He has autism. He was holding a pencil. And he was made to feel like he had done something bad. In his early intervention program it would have been celebrated. Pretending! Object Substitution while pretending! This was huge! The autism expert from Tate’s early intervention program would have written me a note or called me to tell me the great news. In the public school setting he was taken to the principal. Luckily the principal was a very reasonable man. When he told me about the incident he was smiling and assured me he never even considered making that call to the police.

Tate at Kindergarten

One phrase I heard often when I made a request for a service was, “We’ve never done that before.” Social skills coaching on the playground was one of those things they’d never done before. The argument against it was that Tate needed free time on the playground to do whatever he wanted. He would have paced and stimmed. I did not want those precious teaching opportunities wasted. The consultant / advocate I brought with me to our meetings argued for the coaching. In an effort to convince me Tate did not need coaching on the playground, the school district brought in their own autism consultant. The plan was for her to observe Tate for a few hours and then give some recommendations. (My own consultant had worked with Tate for years and knew him well but they wanted someone to observe him for a few hours and make recommendations.) I asked if I could be present to hear the consultant give her recommendations when she was through with her observations. Even that was a point of contention, as some did not seem to want me present. Thankfully, the principal called me and told me when the meeting was about to convene and I lived one mile from the school so I was able to get there and hear firsthand what was said. I will never forget what I heard or the looks on faces that day. That consultant agreed Tate needed playground coaching. AND she recommended even MORE social skills coaching than I had asked for be incorporated into his school day. I smiled all the way home that day. The suggestions made by the district’s consultant were not implemented in full but I am quite certain they would have gone with her advice had she said Tate needed LESS services. No one argued with me about the playground coaching much after that. For every battle I won though, I lost two.

We fought many other battles as well. I asked for Tate to receive a warning before he was to have a substitute teacher. I understood it would not always be possible and I know sometimes people become ill right before school begins. However, if a teacher had scheduled an absence and I could give Tate a warning before he walked into a room with a stranger in charge, it made a world of difference to us at home. Tate’s anxiety level after having a substitute was often high. I asked. I begged. I demanded. This became a real problem and no matter how many times I explained the need it did not seem to matter. General education teachers would willingly tell me when they were going to be absent. But the special education staff rarely seemed to be able to get me that information. The time that mattered the most was once when Tate had a gift to give a special education teacher before the holiday break. He took it to school two days before the break only to find a substitute. The secretary told me the teacher had scheduled time to be off long before that date. He was so hurt. If the goal was to show me who was “in control” then I was shown. Often. There was nothing I could do. I saw over and over that one person could ruin Tate’s day and ruin our evening. One person.

Para professionals and I often had to communicate in secret if we had information we wanted to exchange because I was not allowed to talk to my child’s paraprofessional without their supervisor present. I know what you are thinking. It was a ridiculous rule. It was a hindrance to everyone involved, especially my kids. I was told I could not even say, “There is a Chapstick in Tate’s pocket” to the paraprofessional. The special education director could not be moved no matter how many times I appealed to her. Despite the rule, the paras and I found ways to communicate when it was in Tate’s best interest. On two separate occasions I received phone calls at home in the evening from two different substitute teachers I’d never met. Both had been subs for Tate’s para. Both wanted to tell me something that had gone on at school they felt I should know about. Both had been told they were not to talk to me. They did anyway. Not that I was able to do anything about the problems they discussed with me though.

I came away from that first experience with my district’s special education department disheartened. It has taken me years to recover and be able to fully trust my children’s IEP teams. We have wonderful teams now and are very satisfied. The differences are amazing. My faith has truly been restored.

I learned some really valuable lessons and made some valuable observations those first years.

1.     One person can make or break a child’s education. One person.

2.   When your special needs child is miserable at school, the whole family is affected.

3.   The words “Promote independence” are spoken with a smile by educators, but those words are code for “reduce services” and a parent should not be fooled. Of course everyone’s goal is for a student to become independent, parents included. But not prematurely and not to save the district money.

4.   If the school wants to amend the IEP to “promote independence” and promises the services being reduced “can always be added back in later,” it will take an act of Congress to get those services back. Parents should not allow themselves to be coerced or pressured into signing anything amending their child’s IEP to reduce services.

5.   The law says a child’s needs must be met. So, in theory if there are ten children who need XX for one hour a day and only one person who can deliver XX, working eight hours each day, the district is obligated by law to hire another XX provider. In reality what I believe happens is the children who needs the XX the most get the XX and the children who need XX the least do not get it, OR the eight hours is split between the ten children. But an additional provider of XX is probably not going to be hired. The law is often ignored but dollars carry a lot of weight.

6.   Privacy policies can be a real detriment to a child’s education and safety. Privacy policies keep substitute teachers and many others from knowing about a child’s disability, needs, behaviors, treatments…

7.   Not every educator is good at his / her job.

8.   Tenure protects bad teachers.