The Big Calendar

When Maya was younger (let's say 4 and younger) she had a very difficult time not getting what she wanted RIGHT THEN. Not just the typical toddler/preschool protests either, but often crowd-stopping screaming and kicking and sometimes hitting herself. This past year she has gotten worlds better with understanding concepts such as first/then, maybe later, tomorrow, when it gets dark, after we go to the store, etc. She is getting much better at being calm realizing that she will get what she wants at some point in the future and not right now. This may seem like a small thing, but it has helped calm our lives down quite a bit. There are a lot of things she wants to do or is looking forward to, and we have started to draw little pictures and write down things that are fun on a big desktop calendar. That helps Maya see how many days she has until something she is excited about happens. We put a picture of a school bus on the days she has school and a picture of pancakes on the weekends/days off (that is our symbol for those days). Then we put a little picture of anything special we have planned like a trip to the museum or zoo or a camping trip. This has had an amazing impact on Maya's understanding of elapsed time and her patience level for waiting for fun things. She often suggests the fun things herself too, which helps her to feel like she has more control over her own life and that her wishes are taken into consideration by the family.
Now she is very excited to go on the airplane and go to Maryland. I tell her we are going in July, and because of the calendar, she seems to have a fairly good idea of when July is. I think this would work for all young kids, but especially those who are language delayed and/or seem to have a poor grasp of elapsed time. Having a better grip on what is going to happen and when it is going to happen seems to calm all kids, but especially those who are prone to anxiety when they do not know what is going to happen. Older kids might have fun putting their own events and pictures on the calendar. The photo is not our actual calendar, but one like it from Google Images.

The Curious Incident of the Dog in the Nighttime

The Curious Incident of the Dog in the Nighttime was written by Mark Haddon, a British novelist and poet. He wrote the story from the perspective of a fifteen year old boy with Asperger Syndrome, which is part of the autism spectrum. He worked with autistic people as a young adult, which partially explains how he was able to write such a descriptive, authentic and believable character. Additionally, he seemed to have an insider's view on the day-to-day lives and struggles of those on the autism spectrum.

In the story, the main character, Christopher, is trying to solve the mystery of who killed a neighborhood dog. Christopher lives with his father in Swindon, a town in southwest England. In the course of his inquiries, he finds out some previously unknown information about his family, namely that his father had lied to him about his mother's death the year before. His mother wasn't dead, but had left them. When Christopher found out that his mom was alive and living in London with a former neighbor, he felt as if he could no longer trust his father not to lie to him and sets out in search of his mother, on his own. The author did a great job describing Christopher's train of thought, his anxieties, his heightened senses, his extreme intelligence in some areas and his lack of skills in other areas. I think anyone would find this book to be fascinating. It will make you think twice before you see someone on the bus, train or at the store and think of them as "strange".

One quick note- I know Scholastic book fairs carry this book (we just had ours at school), but I would not recommend it for anyone under the age of 15 or so. It was written as a book for adults and young adults. It has some course language and skirts some adult topics.

The Dentist's Office

A week or so before Maya's appointment to do some dental work last month, she drew this picture. She is still somewhat limited in her expressive communication skills, but getting better every day. She had been saying she wanted to go to the dentist's around this time, which we were happy with since she isn't always able to describe what is bothering her. When she started talking about it we already had the appointment day and time set for some time because she got the exam before anything was really bothering her and the dentist recommended general anesthesia and quite frankly, we couldn't see doing it any other way. The anesthesiologist only comes out once a month so we had to schedule it more than a month ahead of time. (Just as a side note, you know it is going to be pricey when the pediatric dentist tells you, "Yeah, he's really good. There are only about five guys in the valley that do it, so he comes out once a month and we try to schedule all the appointments then.") So about a week before the visit, she drew this picture and told us it was her at the dentist's office. Notice that she circled one of the teeth . It turned out when the dentist got in there, one of her teeth was infected and he was quite sure that was the one she circled in her picture. Poor thing-at the time she drew it we couldn't make the appointment happen any sooner.

She was good about getting the little shot that put her out. It was very strange to see her eyes glass over when the medication kicked in. The dentist said he thinks she grinds her teeth, maybe in her sleep, and that may have contributed to some of the damage. Anyway, after all was said and done, he had to do everything he thought he would have to do. He even cleaned, sealed her molars and took x-rays while she was out.

After he was done, she was out of it for quite awhile. She sort of came to in the car on the way home and then cried off and on for about an hour saying, "The dentist! I need the dentist!" She had been under the whole time, so she didn't think the dentist had fixed her teeth and she was mad. Once she came around a little more, I was able to show her the teeth he fixed and explain it to her better. She was pretty much back to normal by the afternoon, except that her teeth were a little sore for about 24 hours or so. It was quite an ordeal but we are glad to have her in better shape now.

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.