How Can I Talk If My Lips Don't Move?

How Can I Talk If My Lips Don't Move is a book written by an autistic young adult, who was 19 years old at the time he wrote it. He was non-verbal for much of his childhood and still continues to struggle with verbal language, and yet he is very expressive in his writing. The book is a fascinating look inside the mind of the author, Tito Rajarshi, especially as a young child. He was born and spent his early years in India, then later moved to the U.S., first to California and then to Texas. He describes with vivid detail scenes from as early as three years old and what was going through his mind and with his senses. He describes why he was obsessed with the mirror on the second floor of one of the homes he grew up in and ceiling fans and switches in the other.

One theme throughout the book is the patience, perseverance and belief in her son that Tito's mother had throughout his childhood. She taught him all kinds of things that so many people would have thought were beyond his capability to learn. Sometimes it took a long time to learn a new skill, and sometimes it needed to be broken into very small steps, but she never seemed to doubt, at least in her son's eyes, his ability to learn. Even when he was very young and unable to communicate much to her, she continued to teach him, confident that he was taking it in.

He first learned to communicate using words when he learned to spell and write when he was five and six. First he used a letter board and pointed to each letter, and then soon after, he learned to write on his own. Now he is an author and has given the world a very unique look at non-verbal and very limited-verbal autism. This is his description of some of the things that caused him anxiety as a very young child:

"One experience diffused into the next. And every experience settled in my mind as an example of a natural phenomenon, which laid down the rules of the world. For instance, if I saw a bird on a tree, and, at that very moment, I saw someone walking across the street in front of our gate, I concluded that every time a bird sits on a tree, someone needs to walk across the street, What if they did not happen together? Well, I would panic and get so anxious I would scream."

"I remember my voice screaming when I could not see my shadow anywhere around me. I wondered whether it had left me here all alone. I was afraid that I would loose my existence because my shadow had left me. I thought and believed that my shadow was an extension of my body. The feeling of loosing my shadow was like losing a part of my body."

About his senses when he was very young:

"My hearing would become increasingly powerful whenever that happened (hearing real sounds) and I stopped seeing anything. I could focus all my concentration on only one sense, and that is hearing. I am not sure whether or not I had to put any kind of effort toward hearing because I was too young and uninformed in science to analyze the sensory battle that was taking place within my nervous system. It just meant that my colors would disappear if there were sounds vibrating around me."

"Mother knew nothing of my selective vision when I was three. I could look at certain things but not at others. Things that calmed my senses were easier to see, while things that stressed my vision were not easy to look at. So perhaps I could not see things as people expected me to see."

Something Tito overheard her mother say to his father:

"What is the use of going to someone's house when I cannot carry on a conversation because I am constantly trying to keep Tito from playing with the switches?"

His difficulty with his senses, becoming obsessed with things and overgeneralizing situations (like the bird on the tree and the person walking by) routinely caused him crippling anxiety and would lead to screaming and tantrums frequently during the early years. To me it was fascinating to hear what caused anxiety and that most of his tantrums and screaming at a young age were a result of feeling very anxious. On a broader level, it applies to all children. Their tantrums may seem ridiculous and illogical to us, but to them there is something going on, either actual or perceived that is causing them very real distress. A lot of the extreme anxiety calmed as Tito got older and learned how the world worked a little better. He still gets stressed and anxious in certain situations, but overall, things are much better for him. I could go on and on. It was a book full of insights and well worth the read, although it is hard to find. I had to order it on Amazon.

Right on the Developmental Track

A few weeks ago, Maya cut her own hair. You may have read about it on our family blog. Anyway, she is right on track, at least according to friends of mine who have daughters. "How old is she? Yep, five, that's about right," someone at work responded. It's funny, because when she does something that we really don't necessarily want her to do, like cut her own hair, we are torn. We kind of wish she still had her hair, but at the same time, we are glad she is doing what most little girls do at some point around this age. Now that it is growing out a little, it looks really cute. Also, it makes the hair brushing battle that takes place each morning a little more subdued.

Another thing it forced us into, was taking her to the hair dresser to have her hair cut (or the damages minimized). I have always just trimmed her hair at home, because we didn't think she was ready to handle someone cutting her hair before, but she did a wonderful job. She sat in the chair and let them put the drape around her neck, and spray, comb and cut her hair. She followed all the directions. The lady cutting her hair joked, "Well Mom, if you would have brought her in sooner, she wouldn't have had to cut her own hair."

The Explosive Child

I recently finished reading The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children. It was very interesting. I liked it for the most part, and definitely took away some helpful information. The premise of the book is that most "explosive children" are impaired in their ability to handle frustration adaptively and in their ability to be flexible. This is something I have noticed as a common thread for years among children at school who struggle with behavior. Maya also definitely struggles in both of those areas also. Dr. Greene spent time explaining the importance of identifying triggers, which everyone who has ever parented a toddler probably has done. According to him, and I would agree, most things that cause these children to have "explosions" or "meltdowns" or whatever you want to call them are quite predictable if you observe the patterns for any length of time. He describes these children as having a disability in the areas of flexibility and response to frustration in a similar way that someone might have a learning disability in reading or math. Dr. Greene also believes that children do well if they can. If they are not doing well, they are usually missing skills and abilities that they need in order to do well. Based on over ten years of experience with school-aged children, I would say that nine out of ten behavior problems are a result of missing skills, not having positive models, not knowing what to do, etc. It is true that most children want to fit in and be approved of and that few, if any, would choose to be explosive if they were capable of handling frustration and unexpected changes in their lives more adaptively. He talks about some of the reasons behind these problems such as sensory overload, difficulty empathizing and an inability to identify and/or label emotions. Dr. Greene goes into detail about how these skills can be modeled and taught. He advocates a plan he calls "plan B" in which there is empathetic dialogue between parents and children and they come to a mutually satisfactory solution to a problem that addresses both the concerns of the child and the parent. He encourages being proactive and coming up with solutions to problem situations before they arise so that everyone can talk about the problem calmly and make a plan to deal with it ahead of time in order to avoid explosions and meltdowns. Another thing I liked about the book was that Dr. Greene explains that the diagnosis of these children (ADHD, OCD, ODD, autistic, Asberger's, etc.) should not prevent us (teachers, parents, doctors, caregivers) from identifying skills that they need to learn (being more flexible, responding adaptively to frustration, etc.) and teaching them those skills.

Most of the things Dr. Greene discusses in the book are things that I have done to a varying degree over the years with students at school who have moderate to severe behavior problems. Even the empathy step alone goes a long way with these kids. They just want to know that you realize they are upset and can understand. These days with Maya, now that we have been able to identify triggers, understand sensory issues better and her language has improved enough to understand our explanations and for her to express most wants and needs, meltdowns happen far less frequently than they did even a year ago. We are able to be proactive and prevent a lot of them by being aware of possible triggers ahead of time and avoiding them or talking her through them ahead of time. Of course we do try to allow situations in which there is some frustration or need to be flexible when she is feeling good so that she can learn these skills. It has also been beneficial to help her label her emotions. This book had a lot of great ideas that I use/will use both personally and professionally. I think the biggest idea that I took away from the book was that children do well if they can, and if they aren't doing well, we need to figure out what is at the root of those behaviors, because they usually aren't acting out for nothing.

The Allergist Appointment

First of all, I really like the allergist that saw Maya yesterday, Dr. Hellmers. He is really nice, and explained everything to her before he did it and got some of the testing done yesterday, at our initial intake appointment. I thought he would have us schedule another time for that, so it was nice to get some information yesterday (and to pay one fewer $50 copay). They tested her for the top 16 allergens and the only ones that she has a mild allergy to are weeds and dogs. She was really cooperative and didn't even get too upset about being stabbed in the back 16 times. It was all at once, so at least that helped. He said as long as we don't have a dog ourselves, petting neighborhood dogs is fine. That's good, because she loves dogs. She is not allergic to milk, which was one suspicion I had about what has caused her recurring ear infections. Next he wants to test her for candida overgrowth (yeast) which can be caused by too many antibiotics and can cause all sorts of problems and for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) which can cause symptoms such as OCD-like behavior and tics. Mainly he just wants to rule that out, he doesn't think she has it. I am more interested in the yeast test personally. While I don't think that will help us get to the bottom of her ear infections, it may help us figure out a few other things, or at least rule it out as a problem. I didn't take her to get blood drawn yesterday because she had already been poked 16 times and been a good sport about it all. One of the things we started trying to do with Maya early on was to end things while we were still being successful, not wait for the meltdown after having pushed her to far. That seems to work well for us. So next up are the blood test and the dental work. I'll keep you posted.