On the Road

Maya's First Week of First Grade

2010-10-19T20:15:00.000-07:00

I know this happened in August, but I wanted to write about it...

Maya was supposed to go to a different school this year than she did for kindergarten. We got a letter notifying us of this change in the summer. We were under the impression that many of the students in her class would be moving schools also. While we weren't happy about the change, and we weren't sure why it was happening, we thought it would be doable because:

*The new placement school is about the same distance from home as last year's school and it has the same start and end times
*Her preschool program, complete with her teacher and classroom aids, one of whom is still our babysitter, was going to be placed at the new school also...always nice to have some friendly eyes watching...
*The 1-3 teacher at her old school was moving positions and the new teacher had not been decided yet. We really didn't want to fight to stay at the same school when we didn't know who the teacher was going to be.
*We thought that she would still be with some of the kids from her kindergarten class last year.

So we gave it a shot. I tried to contact the teacher before meet-the-teacher night to see if I could come by before we brought Maya by. I have always done this in the past. Keep in mind this is not a general education class where the teacher has 27 kids, they usually have 7-10 kids, so I am a high-maintenance parent (we call them HMPs at school...not in a mean way), but this is a high-maintenance kid, that is why there are not 27 of them. She got back to me, but on the day of meet-the-teacher, so we all went at the regular time to meet her. When we walked in the room we were greeted by a very nice lady sitting at a table, who seemed to be the one talking to most of the parents, so I assumed she was the teacher. She was the aid (and the most positive thing I had to say about the whole experience was that the aid came to meet-the-teacher night-that is pretty much unheard of). We talked to her for awhile then went over and introduced ourselves to the teacher. She was nice enough. We didn't see the names of any of the kids from Maya's kindergarten except for one, who we knew from his mom was going to school in another district. We weren't too happy about the idea of her having no familiar faces on the first day, but we talked ourselves into it being OK. You may be thinking, "You're a teacher. Why are you being so picky?" Well, as important as it is for all students to have a teacher that is a good fit for first grade, there are a few reasons that make it of optimum importance here. First, in the self-contained autism programs, where Maya spends most of her time at this point, the classrooms are grouped kinder, 1-3 and 4-6. So whoever her first grade teacher is will likely also be her second and third grade teacher. Secondly, she still has trouble recounting events to us. While this skill is emerging and we hear more and more about her experiences each day, we are mainly reliant on the teacher and the classroom aids for our information about Maya's days. We need someone who is willing to give us that information.
Anyway, fast forward to the first day of school. She went on the bus with no problem. I didn't hear anything all day until Rick picked her up. At that time they got upset with him for picking her up by the room and basically a different aid than the one we met verbally reprimanded him before introducing herself. Bear in mind that at meet-the-teacher he had told the teacher how he normally comes to the door at the end of the day to pick Maya up and had all last year and she didn't say anything about it then. I guess Maya saw him out the window and got upset. Finally they had him come in and at that point he saw that their way to deal with her being upset was to keep repeating, "Go sit down Maya". Many people would probably think that doesn't sound so bad, but with autistic kids, they get very anxious about what is going to happen next and when it will happen, especially when they are in uncharted territory. Just knowing what is going to happen and when it will happen calms them significantly. A simple, "We're almost done. Daddy can take you home in 2 more minutes" would have likely gone a long way. When Rick told me about it, I envisioned a year (or three years) full of "Maya go sit down" and it made me sick to my stomach. When I heard about how her day went I was at work and felt the beginnings of what was one of the top three worst migraines I have ever had.

Rick was understandably upset about the situation and decided to go straight with Maya to visit last year's teacher, who like her preschool teacher, was absolutely wonderful (I know, big shoes to fill...) Maya was very happy to see her, and they got to talking and Mrs. Bourdo, her kindergarten teacher, immediately took them in to meet Mrs. Palmer, the new 1-3 teacher. Rick really got a good vibe from her and Mrs. Bourdo only had great things to say about her. She also gave us the number of the area special education director. We thought about all of the reasons to bring her back to her old school:

*Familiar campus
*Familiar kids in class
*Familiar specials teachers (music, PE, library- and Maya LOVES PE)
*Other familiar adults (cafeteria, nurse, aids, etc.)
*A teacher we got a much better feeling from
*Mrs. Bourdo had taken the special education resource position at the school. As children from the autism program mainstream into the general education classroom they often receive academic support from the resource teacher. Mrs. Bourdo is an awesome teacher all around, but super-strong in her teaching of academics and in her high-expectations for all students to learn.

At work, I had spoken to our student services coordinator who simply suggested I find out why she was moved before we made any decisions. I went to talk to my principal just so he would have a heads-up if I needed to be late at all in the following few days, but ended up telling most of the story. His background is as a self-contained special education teacher for students with emotional disabilities, and he seemed to think our points were totally valid and was fairly sure we would get the placement we wanted. By the time I got home that afternoon I had one of the worst headaches I had ever had, totally brought on by stress and worry, so I laid down in the dark for awhile (I never do that) and Rick played with the kids and made dinner downstairs.

At this point we weren't sure if she had been placed at the new school for a reason (academic or behavioral needs, etc.). That was never communicated to us or to last year's teacher and we wanted some information. We felt strongly that her current teacher was more of the school of thought that the most important thing was for the kids to be calm and under control and to learn the functional skills of life. We didn't feel like she would be pushed academically and socially and were fearful that she wouldn't be expected to reach her highest potential. The idea of spending the next three years feeling this way was very unsettling. We were quite sure at this point that we wanted her moved back to her old school.

I planned to call the director of special education the following morning and I hoped that the he would take our request and reasoning seriously. We had already heard of two families who had been told they could not switch back (one was the boy who ended up in a neighboring district). I was also worried because often when parents elect to go somewhere that is not the district's first choice, they can go, but transportation isn't provided. Transportation is crucial for us as Rick leaves for work around 4:00-6:00 am and Shayne and I need to be at school by 7:40. Last year, if we got in the car as the bus drove away, we were usually on time. If we had to drop her off, not only would the transition be more rocky, but we would likely be late every day. We really need the bus.

I called the director and sent an email the following morning. This was a Thursday, the first day of school had been a Wednesday. We finally reached each other in person that afternoon. I was at work with kids and he was certainly very busy on the second day of school, but we finally found a time that worked. He told me that the reason for the switch had just been geographical and numbers related. That was a relief for me. He also said he wanted me to know that if she switched back, her old school only has a kinder and a 1-3 program and not a 4-6 program. I brought up our reasons and did not disparage her teacher at the time in any way. To my surprise and delight he not only told us we could switch back, but said he could have the bus arranged by the following Tuesday. I asked if we should finish out the week (it was Thursday afternoon) but he said no, I could take her to her new classroom the following day. I thanked him for helping us and thanked him for all he does for students with special needs. We were all relieved.

The next day I drove her, because the bus wasn't going to be ready until Tuesday. When we got to her classroom, they hadn't heard anything about her starting school that day. I took Maya to the office and the student services coordinator said she hadn't heard anything either. They tried to get in touch with the director, but were only able to leave a message. Meanwhile, I called my principal to explain the situation. They ended up telling us that we could take her back to the other school (imagine how that would have gone over) and start her there Monday when they had talked to the director. I said I would just take her home. My principal ended up covering my first class and Rick came home from work to be with Maya so I could go to work.

I emailed an apology to her new teacher and explained that had I known she was not told that Maya would be in her class, I would never have brought her to the door. She was totally nice about it. She ended up starting on Monday and her teacher emailed me in the mid-morning that day to tell me Maya was doing fine. By Tuesday the bus came to get her and to our delight, it was the same bus driver from last year, who we really like. Things have been going smoothly ever since. She was very happy to have some familiar faces and her teachers and classroom aids have been wonderful.

Big Crowds and Waiting in Line

2010-05-19T20:58:00.001-07:00

This happened last month, but I wanted to post about it...

Huge crowds, waiting in line and not having ALL the candy are three things that Maya has historically had difficulty dealing with gracefully. In fact, at least two out of the three of those things often bother me too. We went to our neighborhood's annual Easter "Eggstravaganza" the day before Easter last month. It was rained out last year, and the year before that, it was tense to put it mildly...

So we decided to give it a try this year, and we were very pleasantly surprised. Maya had no problem waiting in line for the big bouncy obstacle course/slide two different times. She also did great at following the directions about how to go through it, which entailed lots of steps. She waited very well in an area where they kind of corral all the kids like cattle in each of the age groups before their Easter egg hunt and then she found enough eggs to fill her basket. Even I was feeling a little enclosed by that time, but she did great. The way it works is they trade in all their eggs they find for a small bag of treats. All of that happened very smoothly. Shayne, Rick and I had a good time too. It was nice to be at a large gathering and not have to worry as much about any number of problems that would have happened a year or two ago. We are so happy about continuing to move in the right direction.

The Big Calendar

2010-05-13T21:37:00.000-07:00

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 wished 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

2010-03-22T11:23:00.000-07:00

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

2010-03-16T20:14:00.001-07:00

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?

2010-02-21T09:06:00.000-08:00

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

2010-02-09T20:28:00.000-08:00

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

2010-02-07T09:43:00.000-08:00

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

2010-02-03T17:58:00.000-08:00

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.

Being Proactive: Preparing for New Situations

2010-01-30T13:55:00.000-08:00

One thing that really helps all young children, especially those with autism, is knowing what to expect in a new situation. Preparing a child with autism ahead of time for what to expect and what they can do in a new situation makes everyone more comfortable. Children on the autism spectrum, and many other types of children also, experience high levels of anxiety when they are in new places or new situations that confuse or disorient them. Throw in the delayed language skills, and it is also difficult if not impossible for them to ask questions, describe their fears or to be calmed by a verbal explanation from a trusted adult.

So what can be done to prepare them? We had a lot of success last summer with using a story book sort of format to prepare Maya for new situations. Often, stories like this that are specifically designed for kids on the autism spectrum are called social stories. Visuals are essential to this, and google images is a valuable resource for finding almost any kind of image. This is a book I made for Maya last summer to get her ready for the airplane trip back to Maryland. It only took a few minutes with google images. I was even able to quickly find pictures of actual books, toys and food we have, in addition to a Southwest airplane and other very specific things. I love google images!! Another thing to keep in mind when making one if these, is to think of all of the steps, including waiting, security, baggage claim, etc. A year ago last summer, I learned that the hard way...I told Maya as we were getting off the plane we were going to see Grandma, but actually we had to go to baggage claim first, which included about 800 strangers, all kinds of noise and a 20 minute wait (all about 3 hours after her normal bedtime), which triggered the only meltdown we had on that travel day. This book worked like a charm and Maya would refer to it before the trip, during the trip to see what was next and after the trip to look at what we did. My mom actually made her one for the trip down to North Carolina the following week and that worked very well too. I'm sure this sort of thing would be effective for any toddler or preschooler, especially the ones who don't like their routines interrupted. Click here to see the book, Our Airplane Trip. It shows up on a website called scribd, which is the only way I know how to post a pdf so far...

Ear Infections, Dental Problems and Allergies, Oh My!

2010-01-28T14:10:00.000-08:00

Maya is just getting over a second ear infection, or more likely a recurrence of the one that she had in December. It has always been her pattern when she gets a cold or any sort of congestion that lasts for more than a day or two, to get an ear infection a few weeks later, and then when she goes on antibiotics, it goes away, or at least feels better for awhile. More often than not, after a few weeks pass, her ears hurt again and we are back at the doctor's office for more antibiotics. This has happened many, many times and it is happening again right now. She is on her second course of antibiotics.
She also needs more dental work than you would think a little girl whose family tries to take good care of her would need. Her awesome dentist, who we really, really like, wants to give her general anesthesia to take care of all of the issues, clean her teeth and get x-rays. That is happening in February.
We also suspect that one factor in her recurring ear infections may be allergies. We are taking her to the allergist next month too. All of those things are related to each other, I'm sure, so I hope we can make good progress in all three areas and get her as healthy as possible. I will keep you posted on how all three situations unfold over the next few weeks and weather or not we find out any new information.

Spontaneous Yes and No

2010-01-26T18:24:00.000-08:00

I tend to view progress incrementally. Maybe that is part of being a teacher. I break progress down into small parts sometimes separating skills into sub-skills. I was thinking of this today in regard to Maya's fairly new skill of answering questions using yes and no. The first accomplishment that Maya made in this area was a few months ago, when she would answer yes and no accurately when given the choice at the end of a question. For instance we would ask her, "Do you want to go outside? Yes or no?" and she would answer. During the past few weeks she has started to answer questions by saying yes or no without having to be offered the choice. If we ask, "Do you want to go outside?" she may just say "Yes"' on her own. This is helping her to communicate all kinds of things to us. It is helping us to help her put her feelings into words. She usually ends up coming to lay down by me sometime between 3:00 and when we get up at 6:30. A few days ago, she didn't so she was still asleep in her room when I woke her up at 6:30. She was very sad and whiny while getting ready for school. After about 10 minutes of struggling, I asked her, "Are you sad because when you woke up you were in your bed and not mommy's bed?" and she answered sadly, "yes". We would never have gotten an answer to that question even a month or two ago. We may have guessed at what was bothering her, but we would not have known. This may seem like a small step, but naming her emotions and the reasons behind them is an abstract and difficult skill, which we can now help her to do. This is just one way that her spontaneous use of yes and no is helping us to communicate with her better. It seems that along with this she is answering other types of questions more frequently also. We are excited to hear all that she has to say!

Continuing to Catch Up: The Same Event One Year Later

2010-01-21T14:18:00.000-08:00

On December 14th, we went to Williams, AZ to ride the Polar Express Train. You can read about it and/or see some photos here. We did the same thing in December 2008. You can read about that and/or see photos here. Anyway, I know this is the case with all kids, but with autism we really feel like progress is not always linear. It is very much two steps forward, one step back, even when things are going well. Sometimes we can feel and see amazing progress being made. Other times, there are regressions which can be very upsetting. It was helpful for Rick and I to be able to compare our Polar Express trip in 2009 with the trip in 2008. The circumstances were very similar, but Maya was one year older and one year more grown up. Here were some of the highlights:

Last year, had a hard time waiting to get there (the car ride is about 2 1/2 hours long) This year she waited patiently, enjoying the scenery and the music in the car.

Last year, she was running around all over the halls in the hotel. This year, she stood by us (mostly) and waited to walk with us to the room.

Last year, she got very impatient in the line at the train station and started to whine and have a fit, going totally floppy or trying to physically struggle to the front of the line (it takes about 20 minutes for the other passengers to get off the train and for them to start boarding the new passengers). This year, she waited patiently and understood the explanations like "The other people have to get off of the train" and "The workers are cleaning the train" and "We have to wait in line for our turn".

Last year she didn't sing along with the Christmas songs (but enjoyed them), this year she did sing some and followed along with a lot of the actions :)

These may seem like small steps, but considering some of our roughest times are times when we are out of our normal routine, her adapability, flexibility and ability to understand all of our explanations of what was going to happen next was amazing and made the trip relaxing and fun. After years of being completely stressed when we are away from home, it was so great to be able to enjoy ourselves together, and so great to see Maya enjoy herself and not be so anxious and scared of what was happening around her.

A Friend's Birthday Party

2010-01-19T18:07:00.000-08:00

A few weeks ago, Shayne and Maya got invited to a birthday party for one of their neighborhood friends. It was perfect, because it was at the playground that is about 50 yards from our house, and the friend is someone who they play with almost every day. Social gatherings always take special consideration for us. Among them are:

Do we know all the people that will be there? Do they know us? Do they know about Maya? Sometimes she blends right in, sometimes she really doesn't.

Will there be things that she will see that she won't leave alone like a fish tank, breakable figurines, a pool table, treats that are reachable, etc.?

Is there a quick "escape route" in case things go awry?

Will Shayne still be able to stay if Maya can't?

That is the short list...there are a lot more. Anyway, this party went great. She spent some time playing the kids and some time on her own, which was easy to do because they were outside, no feeling trapped. There were treats out the whole time and she was very polite and waited patiently for the time to have the treats (gift bags, cake, soda). That was a huge step in the right direction, because there have been times (a year or more ago mostly) where she can't move past something like getting all of the cookies and we spend the whole time we are at the event fighting her away from the cookie plate, making a scene. There wasn't anything to break because we were outside, so that was relieving. The other kids (most of whom we knew, but there were a few new faces) were very nice and they all played well. Although we did not need to make a quick exit, it was comforting knowing that we had a very quick and easy escape route if anything turned south. I also think it was comforting to her to know she could just walk back to her own house whenever she had enough.

You may have guessed that with all of these considerations, a lot of times when we are invited to gatherings, we just don't go. That has been the case sometimes, especially a year or more ago when public meltdowns were more frequent. More recently, everything is often fine and goes relatively smoothly, but things are seldom relaxing, because we are always running scenarios through our heads and being proactive to prevent possible problems. Attending gatherings is always a gamble, but circumstances make the odds better or worse that we will be successful, and as she has gotten older, she is much easier to calm and be reasoned with.

At this party she followed directions from the birthday boy's mom for taking a photo, opening gifts and sitting at the table for cake and was very polite the whole time. Shayne had fun too and Rick and I were even able to relax a bit. It was a huge success, I think partially because the circumstances were good (location, familiar faces, etc) and because she is maturing and doing better all around at being socially appropriate.

We were very happy that all went well, and we are going to try another birthday party next weekend for another boy that both of the kids play with a lot. We're hoping for the best!

A Huge Breakthrough: Yes and No

2009-12-16T20:01:00.000-08:00

Most people take for granted that their kids will be able to answer questions with a "yes" or "no" at some point early in their lives. One of the red flags to us in Maya's first few years is that she would not use yes and no to answer questions. For instance, when she was 3 or 4, we would say, "Maya, do you want a piece of pizza?" and if she wanted it, she would either reach for it or say "pizza". It got a little more complicated if you asked her to make a verbal choice. "Maya, do you want pizza or chicken nuggets." "Chicken nuggets." But then we wouldn't always know if chicken nuggets was her choice or if she was just repeating the last word she heard. When she was 4 she seemed to be doing well at saying what we thought her actual choices were and we tried to provide her with a lot of opportunities to make choices, so her speech and ability to answer questions and make choices was definitely on the upswing.
About 2 months ago, she started using yes and no! I thought it would be something she would gradually get used to, but it was like turning on a lightbulb. Once she got it, she really got it. So now if we say, "Do you want a piece of pizza?" she might say "yes" or she might say "pizza", but if we say, "Do you want a piece of pizza, yes or no?" she will say yes or no. We have also tested it out and she means what she says, she is not just repeating. This was a huge breakthrough for her and we are so happy about it.

Some of the Reasons Behind the Meltdowns and the Inflexibility

2009-12-16T16:04:00.000-08:00

This is an amazing article that addresses some of the reasons that autistic children have tantrums and meltdowns for seemingly small reasons. It really reminded me of how imporant it is to take Maya's way of thinking into consideration all the time, especially when we are all having a rushed day, which is of course the hardest time to be patient and when we all feel the worst. I have noticed that there is a big difference between days when we wake up with plenty of time to get out to the bus on time and when there is not plenty of time. I know we are all busy, so if you don't read the whole thing, read the first part about a typical day described by mom and then the autistic child and the less typical day described by both. It is very insightful.

Continuing to Catch Up: The First Day of Kindergarten-- A Pleasant Surprise

2009-12-15T21:38:00.000-08:00

This is long, but it was a very important milestone and goes into a lot more detail than our family blog's post about the first day of kindergarten:

One of the things that caused me the most anxiety over the past few years in regard to Maya, was anticipating the first day of kindergarten. When she was 3, I assumed she would come to my school like Shayne. When she was 4, I still hoped that she would come to my school, but had serious worries about how she would fit in with a full-sized kindergarten class (she went to preschool with 4 -6 other kids and 4-5 adults). At about this time last year, we (Maya's teachers and specialists at school and Rick and I) were starting to discuss plans for the upcoming school year (this year). No one was fully convinced that she could handle all-day kindergarten in a regular setting, but she was doing fairly well spending some time in a larger preschool class (12 kids or so) for some time each week. We knew she was up for a full evaluation that same month, so we all decided it would be best to see the results of that before making any decisions about kindergarten.

Anyway, to make a very long story short, after seeing the results of the evaluation (the autism diagnosis), we decided to go with a self-contained classroom for kindergartners on the autism spectrum. We don't provide self-contained autism programs at my school, so I thought, if we were not going to be able to bring her there anyway, we may as well have her go to her home school in Mesa. We had been extremely happy with our experience with Mesa's preschool program, so it seemed like a logical choice.

I felt torn about the decision at the time. On one hand I felt sad and disappointed that she would not be coming to school with Shayne and I as we had always planned. Shayne was sad about it too. On the other hand, I felt a slight ease in the anxiety I always felt when trying to think of being at the school I had worked at for 8 years in a professional capacity conflicting with being there as Maya's mom, which promised its own little package of issues. She usually saves her worst for me, and I could foresee all kinds of complications. I also knew she would do better with a smaller class with teachers trained to deal with students with similar struggles.

My next step was to go see what the classroom looked like and to meet the teacher. I did that last May, a few weeks before school got out. You can read about it here if you want to. It was a very positive experience overall.

Fast forward a few months to August. You know how schools have meet the teacher night? Well Maya's teacher had meet the teacher appointments. Each family came at a separate time. I thought this was really cool as kids on the spectrum aren't noted for their folksiness with new people or their flexibility with new places and situations or their positive attitude toward school for that matter...this way they could get used to the room and the teacher and not have to worry about a bunch of other kids and their families at the same time. Rick took Maya to meet the teacher because I had already met her and was going to be at work that day. He said they stayed for about an hour talking and letting Maya explore. Maya was getting excited for school. Also, Grandma had sent her a red shark backpack and a matching lunchbox, and many of you know, Maya is a huge fan of anything aquatic. I felt good about the visit.

I still had lots of worries though. As the first day of kindergarten approached, the underlying feeling of apprehension that had clouded my subconscious for almost 2 years became a chest-crushing, sleepless night kind of anxiety. The main worry? That she wouldn't get on the bus on the first day. She was going to ride the bus to kindergarten (had to in fact for me to get to work on time, and I had a brand-new boss, I needed to get to work on time). I know that the bus drivers have a basic training when they transport "special handling" kids, but I envisioned one of two things happening. Either us having to physically drag her onto the bus and strap her in kicking and screaming and hitting herself, or the bus driver not taking her like that (understandable) and us never being able to successfully get her to kindergarten without driving her there and physically carrying her in, kicking and screaming. Honestly, the best we dared to hope for was that she would strongly resist, but finally be able to be coaxed and/or bribed onto the bus, at least the first time. I would have considered that a victory.

Fortunately, none of the three of us had our first day back on the same day. I went back to work first, then Shayne started second grade about a week later, then a few weeks after that was Maya's first day. I don't think Rick or I or even Maya for that matter slept very well the night before. I had everything laid out: clothes, shoes, backpack, lunchbox, water bottle, breakfast stuff. We woke up with plenty of time. She was very cooperative about getting up early, that was a nice surprise. She is a naturally late sleeper, so we had started about a week prior, getting her up a little earlier each day so it wouldn't be too much of a shock for her. She knew she was riding the bus to kindergarten that morning, we had been talking about it a lot. She got her backpack on and walked right out to the spot where the bus was going to pick her up. Rick, Shayne and I were all with her. We got a few nice pictures. Shayne said to her, "I was nervous on my first day of kindergarten too, but once I got there, it was fun." The bus pulled up, and the driver was so friendly. He had (still has for that matter) a very kind face and way about him. He asked if she was verbal or not and if there was anything he needed to know. I told him a few things, and she got right on the bus. I could tell she was a little nervous, but more excited and feeling like a big kid than anything else. Then we waved and said goodbye, and the bus drove away.

What I felt then was very odd and is hard to describe even now. It was really the first time in her life that Maya set out to do something on her own, with new people. She went to preschool, yes, but Rick dropped her off and picked her up every day and while she was there, she was in the care of ladies who knew her very well. I know all mothers are protective, but I also know that I was/am about 5 times more protective than that with Maya. She was not verbal enough at that point to tell me about her day and I wasn't sure that she would be able to communicate her needs at school. She also had/has violent tantrums from time to time where she hits herself, which can be very scary for all involved. These were just a few of the concerns aside from the largest worry, that she wouldn't get on the bus. I had also never seen her set out on her own, and with confidence. So that day when she got on the bus, I was so happy and relieved, but I also felt like part of my body was missing.

I was nauseous all morning, and had arranged ahead of time for her teacher to shoot me a quick email at some point in the morning just to let me know how things were going. I wasn't naive enough to think that things would be going well, I don't think they really go well the first day in regular kindergarten either. I just wanted to know that she was surviving. I couldn't focus on anything but that all morning. I finally got an email that said it was a little rocky, but getting better. I was relieved, but thought, "What about tomorrow? I'm sure she won't want to get on the bus now that she knows she has to stay all day." But she did. And she still does. Some days are better than others, but even if she resists getting ready, she gets on the bus, welcomed by a kind, "Good morning Maya!" from the bus driver. He understands that she has to wait until she gets to the top step to turn around and give me a kiss and that she sits on the same seat with her backpack next to her and that she has to have her sweaters and jackets zipped up all the way. Her teacher knows she likes to sit on the green oval on the carpet every morning at calendar time, and that she likes to burrow under things when she gets upset and that her favorite book at school is Bones, a book about animal skeletons. So, did we ever expect the beginning of her kindergarten year to go as well as it did? No, we didn't, but we are so glad she has a good teacher and a nice bus driver and that things go fairly well most days.

Catching Up

2009-12-15T21:00:00.000-08:00

Once this school year started, there was a whirlwind of activity and it seems like it is all I can do most weeks to keep up with the other blog. There have been some things that have happened since the summer though, that I think fit well on this blog, but I have not written about yet. We have made huge strides, but progress tends to follow a two steps forward, one step back kind of pattern most of the time. I am going to attempt to summarize the developments of the past 3 and a half months in a roughly chronological way. So you will see a series of posts over the next few weeks that may refer to dates that happened a few months back. That is the goal anyway, to update you on the past few months and make this a current blog again.

Now That I Am Back to Work...

2009-08-13T00:31:00.000-07:00

It is pretty tough to keep up with the both blogs now that school has started again...I don't want to get rid of this one, I just want anyone reading to know that I am working on updating our family blog first, then will work on this one.

On Our Way to Maryland!

2009-06-30T14:13:00.001-07:00

We are really excited to be leaving for Maryland tomorrow. Maya loves the airplane and her family members in Maryland, so she is super-excited for the trip. Shayne is so excited he is about to explode. This year Maya is a lot more interested in playing with other kids that she was last year, although she played with Sydney and Jonathan pretty well at the beach a few times last year. Anyway, when playng with her, there is no doubt that her cousins will notice that she is a little different, even if they didn't last year. This is mainly for Alison, Tammy and Sarah...if you want to maybe mention to your kids that Maya doesn't talk much, but she likes to play still, that would really help. Tell them that just because she isn't saying much doesn't mean she doesn't like them or isn't having fun. Also, if they want to play something specific with her, showing her what to do instead of telling her what to do usually helps. If she starts screaming and hitting herself, which we are really hoping she doesn't (she didn't last year), and any of the kids see her, it can be upsetting. You can just say something like, "When Maya doesn't know how to say what she wants, sometimes she gets really mad. Her mom/dad will take care of her. She will feel better soon." Again, we are hoping to avoid any of those episodes, and really hoping she develops her social skills a little more with her cousins this year. Thanks again for all of your interest and support with us and Maya. We are so excited to see everyone!

I Give the Second B12 Shot

2009-06-27T11:13:00.001-07:00

Actually, compared to everything else, giving her the second B12 shot (the doctor gave the first one) was not bad at all. I decided to wait until a few minutes before I normally wake her up. I wake her up most days around 8:45, because if I don't she will sleep all morning and stay up half the night, her natural clock being very much like her mama's. Anyway, it was over in .5 seconds and she barely stirred. We only have to do it every three days. As far as any impact it seems to be having, we are seeing a lot of language, eye-contact and social interaction, all great to see. She seems to be continuing to move forward in all areas, especially the past 2 days. Hopefully she is through the rough patch and on a more permanent upward-curve. We are so happy to have our happy girl back (well, mostly happy...)

Gluten-Free Oats...Awesome!!

2009-06-27T11:07:00.000-07:00

Maya started asking for oatmeal last week. Great, right? Usually...Well, it goes against all motherly instincts to forbid oatmeal, let me tell you. Luckily, a farmers market type health food store down the street just started carrying gluten-free rolled oats and they are great. Maya loves them and so do Shayne and I. I have been making them with a little brown sugar for breakfast for the past few days and it has been working like a charm.

B-12 Shots

2009-06-24T12:18:00.000-07:00

So yesterday we had our appointment with the doctor so he could show us how to give the B-12 shots. I am actually glad they come in shot form, because it is virtually impossible to give her anything orally these days. I try to give her a teaspoon of multi-vitamin and mineral liquid each day and she usually forcefully expells at least half of it, even if she is laying down and I am holding her mouth. She is very determined not to ingest vitamins. I have tried mixing it with everything, and she can instantly detect the most minute amount, and will reject the food or drink with a simple, "Plah!" So the needle is tiny and the dosage is very small. She didn't seem to be very bothered when he gave it to her. We only have to give her one every three days. He said a lot of people just do it when they are asleep and often they don't even wake up, so that is what I will try on Thursday.
So the appointment went well and he said that the rough period we went through is "totally expected" and that it often takes a few months before you see significant improvements. A few months...so I guess we are going to stick with it for awhile. We are happy to be back most days to where she was before at least, because now we can go places again. We had forgotten how diffucult it was for us 1 1/2-2 years ago to really go anywhere or do anything. At the time it didn't seem as bad because we were used to it I guess. On Monday we went to downtown Phoenix on the light rail train, and walked around downtown for awhile around dusk, so it wasn't too hot. It was really fun. It took 2 1/2 hours all together and she was happy the whole time. That is pretty much how it was before, so hopefully we are on the upswing. I am glad to be, especially considering we will be flying across the country a week from today.

Even More Picky

2009-06-24T12:11:00.000-07:00

Things are getting more difficult with the diet, as she has decided to stop eating some of the foods she was eating with no problem earlier. Some things she has stopped eating for the most part are:

rotisserie chicken
GFCF pancakes or waffles
pasta
sometimes eggs

I said to her this morning, "Do you want a pancake?" and she said, with a look of disgust on her face, "Pancake-plah!" While this may not seem like a big deal, we are already so limited, so this is not good. Hopefully we will be able to find some new foods she likes...

Last Week: A Recap

2009-06-24T11:05:00.000-07:00

So last week was pretty rough until about Friday. We knew that this was a trial and error thing and that things were going to get worse before they got better, but she really regressed a lot for a little over a week. We were seeing behaviors and sensory issues that we haven't seen for two years in many cases. Full-blown, face-hitting tantruming, and very little talking to name a few. It was very emotionally difficult for everyone to go back to that after coming so far. Right as we were about to throw in the towel with the whole diet thing, we gave her a piece of cheese on a cheeseburger (I read that gluten can take 3 months to work out of the system, where you usually know about casein in about 3 weeks). It had almost been 3 weeks, so we gave her the cheese, and she was great the rest of the night, and has seemed to be on the upswing since then, having days that are comparable to what we were having before. The only marked improvement from before has been her use of "my" (ex. my leg hurts, my popcorn, etc.) and her interest and improvement in fine-motor activities such as cutting, gluing, coloring and drawing. I will get my scanner hooked up and scan a few things so you can see what I am talking about.

Unexpected Events While Sticking to a Special Diet

2009-06-23T11:03:00.001-07:00

I haven't posted in awhile...Things have been pretty hectic...

So while we were up camping a week ago Sunday-Tuesday, we packed very carefully so that we would be able to stick to the diet. We were only planning on being gone over night. That all changed in a hurrry when the car wouldn't start. We tried to do the best we could, a hamburger (she doesn't like the bun) and french fries for dinner, a sausage and egg for breakfast and then we were home by lunchtime.

She was still having a really hard time with being flexible on the trip. We were all tired of dealing with the car, but she had a full-blown meltdown once we got to the garage. We (Maya, Shayne and I) stayed outside, so it could have been worse, but it was pretty bad.

Marshmallows Are GFCF!!

2009-06-13T14:15:00.000-07:00

This is great news for us as we prepare to go on our first camping trip of the summer tomorrow. She has been so excited about roasting marshmallows she even pretended to do it a few weeks ago with a stick and a balled up paper towel made to look like a marshmallow. What a relief!

GFCF Day 7 (Friday)

2009-06-13T14:13:00.000-07:00

breakfast
a bunch of organic strawberries

lunch
GFCF pancakes made from Bob's Red Mill mix, really good, sort of taste like multi-grain pancakes

snack
strawberries
Trader Joe's GFCF brownies

dinner
pulled pork and BBQ sauce
blueberries

Her behavior was much better today and she is talking about the same as before the diet. She is showing more interest in fine-motor activities such as drawing, coloring and using the hole puncher.

GFCF Day 6 (Thursday)

2009-06-13T14:10:00.000-07:00

breakfast
egg
chicken sausage (don't think she ate any)

lunch
organic apples and peanut butter
tortilla chips

snack
chocolate ice cream made with coconut milk (from Whole Foods, she loves this)

dinner
BBQ chicken breast
organic peas

Her behavior has been absolutely attrocious today. Like a bad day when she was 2 1/2. Hitting, screaming, tantruming, throwing things, making a scene everywhere we have gone today. She seems really itchy, headachy, angry, uncomfortable...I thought we were coming out of it yesterday, but today has been the worst so far. Hopefully this part will end soon.

Trader Joe's GFCF Brownies...Delicious!!

2009-06-12T16:23:00.000-07:00

Today we made brownies from a mix we bought last week from Trader Joe's. They were delicious! You make them how you would normally make brownies, water, egg, oil, mix and bake. They are super-easy, inexpensive ($2.99 per box) and delicious! Maya was in heaven eating hers right out of the oven. This whole past week has seemed like me constantly denying her, so it made me very happy to give her something that just seemed like a regular treat. Of course just because it is GFCF doesn't make it healthy, but this will make a great once-in-awhile treat.

GFCF Day 5 (Wednesday)

2009-06-11T17:59:00.000-07:00

breakfast
GFCF pancakes from Trader Joe's mix, frozen from 2 days ago, then put in the toaster, that worked well and was super-easy
1/2 of a home-made popsicle (cran-grape, frozen blueberries, raspberries and blackberries blended)

snacks
1 1/2 apples
banana
a few grapes

Lunch
left-over BBQ chicken pieces
orange slices
a little cran-grape with new vitamin and mineral supplement powder in it which just arrived today. She drank about 2/3 of it, then put it down and said "yucky"...not bad for day 1 of our first supplement...

Dinner
taco meat (The rest of us had regular tacos. She only wanted the meat anyway, so it worked out well)

Behavior was pretty good today. She also had an obvious language burst, mostly after dinner. She was downright chatty. One thing that she started to do was to say the less essential words like "a" and "the" in sentences, which she has pretty much always left out. For example, when Rick took a piece of her chicken off her plate, she said "Daddy, don't eat the chicken." Before it would have been "Daddy don't!" or "No chicken!" or even "Daddy don't eat chicken!" or something along those lines. She was also gesturing more than usual (waved once, pointed a lot and pretended to fly flapping her arms), smiled noticeably more and had very good eye contact. Right before she went to bed, she put on a bathing suit, spread a towel out on the ground, layed on it and said "It's the beach." That is different because she normally doesn't use "the" and I have never heard her use another contraction besides "don't". Rick noticed a lot of the same things that I have written about and Shayne even pointed out that Maya is "doing better with her talking" so I don't think I am imagining the growth.

Withdrawal Symptoms

2009-06-10T17:52:00.000-07:00

We noticed quite a few withdrawal symptoms on days 2-5, peaking on day 3. Here is some information about that:

" Some children, especially those who are making opiate-like peptides from their foods, are actually physically addicted to those foods. When the foods are removed from the diet, they can experience symptoms that are similar to a drug withdrawal. The most common symptoms are irritability, and sometimes anger or rage. Children may also temporarily regress in their behavior or in their developmental skills. Withdrawal symptoms can actually be viewed as a good sign, as this indicates the foods were having some effect on the child. Anytime there are negative symptoms from removing a food from the diet, the food is a problem."

From The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet, by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.

More on withdrawal symptoms:

Immediate Symptoms of Withdrawal from Gluten and Casein:

Insomnia
Anger and anxiety
Fatigue
Night sweats and day sweats
Hyperactive behavior
Constipation or diarrhea
Clinging and whining
Upset stomach
Cognitive dysfunction
Return, or amplification of prior ADHD or autistic behaviors

From Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies, by Kenneth Bock, M.D. and Cameron Stauth

GFCF Day 4 (Tuesday)

2009-06-10T17:49:00.000-07:00

breakfast
GFCF frozen pancakes from Trader Joe's
strawberries

snacks
banana
tortilla chips
Lays potato chips

lunch
maybe a little leftover brown rice pasta with sauce and chicken sausage...not sure if she ate much of it.

dinner (this one was a hit)
BBQ chicken breast (a whole one, pretty good sized, cut into bite-sized pieces and dipped into more BBQ sauce)
a bunch of peas

Behavior a little better today, still a little irritable, but better than Monday. She was talkative and playful most of the time.

GFCF Day 3 (Monday)

2009-06-10T17:23:00.000-07:00

breakfast
GFCF pancakes made from Trader Joe's mix- ate these all morning, probably 4 or so altogether
A bunch of organic strawberries

lunch
mainly snacked on tortilla chips, Lay's chips, pancakes and strawberries
offered a whole hotdog, but she did not eat it

dinner
made brown rice pasta with Classico sauce (no preservatives) and chicken sausage (no nitrates)
broccoli she didn't eat either thing, but ate left over taco meat and an organic apple, the rest of us liked the pasta. It is actually more like traditional pasta than whole wheat pasta is.

I tried giving her a homemade popcicle made with rice milk, peaches, mangos and sugar, but she didn't like it. Shayne did though! A side-effect of this whole thing is that we are all eating healthier than before.

Her behavior was awful for a lot of the day, especially in the morning- a lot of screaming, face hitting, banging things, crying, OCD (with doors being open, lights off, etc.) and inflexibility, things that we haven't seen this much of in a year and a half or so. Again, this is actually a positive sign at this stage, as she "withdraws" from the things that have been causing her problems...that has been our mantra lately anyway...worse before better, worse before better...

GFCF Day 2

2009-06-08T20:01:00.000-07:00

Well, today here is what she ate:

breakfast
GFCF pancakes frozen from Trader Joe's (2) with maple syrup

lunch
1/2 banana
2-3 strawberries
a few tater tots with ketchup

snack
banana

dinner
salmon
peas
orange slices

Her behavior totally went downhill on day 2...this is actually a good sign, believe it or not. It means her body is withdrawing from the opiate-like effect that gluten and casein have on her body. If gluten and casein were not much of an issue, we wouldn't see many behavior changes, positive or negative. It should mean that after we get all of it cleaned out of her system, we should see some improvements. Hopefully it won't take more than a few days.

GFCF Day 1

2009-06-07T23:40:00.000-07:00

Well, Saturday was our official day to start the GFCF diet with Maya. Everything went well and she ate a variety of healthy foods.

Breakfast:
GFCF pancakes with real maple syrup
strawberries

Snack:
dry corn cereal sweetened with a little cane sugar-she likes it cause it has panda bears on the box.

Lunch:
Pulled pork and BBQ sauce- she has never liked a bun with this, so it worked out great. We all had buns and she didn't mind at all.
blueberries

Dinner:
Taco meat
tomatoes (she didn't eat many of these, but loved the meat, we had regular tacos)

As far as any imporvements go, it is supposed to get worse before it gets better if the diet is having an impact. Not much change on day one.

GFCF Here We Go!

2009-06-07T23:35:00.000-07:00

Why gluten and casein free?

We have thought for awhile now that Maya shows the symptoms of someone with food sensitivites or allergies like being itchy, having dark circles under her eyes sometimes and "brain fog". Here is why so many kids with autism respond so well to a gluten and casein free diet, taken from the website http://www.gfcfdiet.com/:

The theory is that many if not all autistic children have a damaged intestine/gut. The damage may be there from birth but more likely comes from some immunological injury like a bad reaction to an immunization. (keep in mind this is mostly theory). Autistic children seem to have weaker immune systems, and a lot seem to have digestive problems.This "leaky gut" allows some food proteins to pass through into the bloodstream only partially digested, particularly the gluten from wheat/oats/rye/barley, and the casein from milk and other dairy products. These partially digested proteins form peptides which have an opiate-like affect (opioids is another term for them). They can bind to the receptors and cause harmful effects in the brain just like a regular opiate. Opiates can either cause or magnify autistic symptoms. The opiates are a type of narcotic. There are receptors in the brain that they bind with to reduce pain and induce pleasure, but they also have harmful side effects. An example of an opiate is morphine or heroin. Until it can be figured out how to heal the "leaky guts", many parents are putting their children on the gluten free/casein free diets . By Barbara Byers

So the theory is that the kids aren't exactly allergic to gluten and casein, but that they can't break it down properly, and it is absorbed into the bloodstream in this partially broken down state and that causes all kinds of problems. So we thought we would give the diet a try.

So in practical terms, what does a GFCF diet entail? It means cutting out wheat, oats, rye, barley, and dairy and all things that are made with any of that. A lot, right? Yes, until you consider trying to do this diet 5 or 10 years ago. Now, so many people are following the diet that there are tons of books, web resources and products to help. From what I have learned so far:

5 Most Difficult Foods to Cut Out:

1. doughnuts-those are her favorite. There is a GFCF doughnut recipe that I may try at some point soon. If I do, I'll let you know how they taste...
2. cheese-Maya loves cheese-string cheese, cheese slices, grilled cheese, cheese burgers, etc.
3. pizza-that'll be hard for all of us...we can't exactly eat it in front of her.
4. bread-toast, PB&J, etc. We tried making one kind of GFCF bread that I thought was pretty good, and even Shayne liked, but Maya wouldn't eat it.
5. chicken nuggets-Maya would eat these at every meal if she could. No luck with a GFCF version, although there are a few recipes I might try.

Foods/Condiments that I am so happy are GFCF:

1. steak-she loves this
2. A1-the only way she likes to eat steak. This was a close one. Vinegar has gluten in it, but distilled vinegar or cider vinegar don't. A1 has distilled vinegar...:)
3. salmon
4. ketchup (Heinz) and most kinds of french fries (not McDonnald's fries though...I think our McDonnald's days are over, at least for awhile...probably not a bad thing)
5. BBQ sauce-same story with the vinegar. There are a few brands out there that are ok because they use a gluten-free vinegar type. She loves dipping anything in BBQ sauce.
6. The taco sauce she likes...this makes GFCF tacos very easy to do. The only thing you have to leave off is the cheese, but they are still pretty good. I even snuck some cheese on Shayne's and she didn't seem to care she didn't have any.
7. Mission tortilla strips-yes, those are the kind that come in an enormous bag at Costco and we all like them :) Salsa and guacamole (homemade) are GFCF also.
8. eggs-she has always liked those for breakfast

What great GFCF substitutes have we found so far?

1. GFCF pancakes from Trader Joe's- they taste very close to the real thing and don't cost too much. We all four like them. This was such a big deal to me because she LOVES pancakes.
2. GFCF chocolate chip cookie mix from Bob's Red Mill- not exactly the same, but good, and again, everyone likes them. Also, they have this mix at the regular grocery store.
3. Ice cream made from coconut "milk" instead of dairy. It tastes great, but it's 5 dollars a pint... There is a recipe that I have that is made from coconut milk also. I will give it try soon and let you know how it tastes.

I will write more later about how our first few days of going GFCF have gone.

Why Biomedical?

2009-06-07T23:11:00.000-07:00

On Monday, we went to go see a new doctor for Maya who is a integrative pediatrician and one of his specialties is treating children with autism. He is also a DAN doctor, which means he believes in biomedical interventions for the treatment of autism and has been trained in that area. There are tons of people who have seen amazing improvements in their children as a result of treating the underlying medical issues that many believe cause autistic symptoms or cause them to be more severe. There are others who do not believe in this approach. Why are we doing it? As we were reading case study after case study, so much of the information shared by parents and doctors was so similar to our experiences with Maya that it seemed worth trying. Nothing that we are planning on doing is more than "inconvenient" at this point. If there are underlying medical issues that are having an impact on her behavior, we want to address them in as natural a way as possible. The three things we will start with are:

1. Gluten-free casein-free diet
2. A fairly potent multi-vitamin and mineral powder, formulated specifically for children on the autism spectrum.
3. Vitamin B-12 shots.

I am keeping this short, as I do not want to bore you by repeating everything I wrote on our family blog.
I will post separately about why these 3 interventions work for some kids and what our experiences are.

A Tearful Goodbye to Preschool

2009-05-29T17:42:00.000-07:00

Maya had the best preschool teachers in the world. I know a lot of wonderful teachers, so I know what I am talking about, and these ladies are absolutely great.

I want to take you back to the summer of 2007, when Maya had just turned three. At this time, Maya was very limited with speech, only having 30-50 words, most of which were labels for things. She did not ask for help or tell us what was bothering her at that time, but would get very frustrated if she had something to say and would often end up screaming and hitting herself. She was very difficult to take anywhere at that time. Anyway, I don't have to tell you how nervous I was at the prospect of leaving my baby at school, when she had such huge communication barriers. At this point, I could count the number of times I had left her with anyone other than Rick on one hand. I knew that preschool would be what was best for her, but it was a very stressful time for us.

Then I met her teacher. I left work a few minutes early to stop by the school before she left. My intention was to just say hello quickly, and leave her with a letter in which I detailed how much progress she had made during the previous year. I guess I wanted her to know that although she was still delayed, especially in speech, she had come a long way. Anyway, to make a long story short, we ended up talking for 45 minutes, and I left with full confidence that her new teacher could handle anything Maya threw at her... and she did. I was still nervous about the first week, and it was bumpy, don't get me wrong, but everyone stuck with it and did wonderfully, and as a result, Maya eventually followed a schedule each day, learned tons of new words, learned all of her letters and letter sounds, learned how to count things and how to "be" at school. Rick and I would joke when we noticed her doing something polite or showing mastery of a new skill that "she must have learned it at school."

There were 3 other ladies that work as classroom aids in Maya's room and each of them was with Maya for the full two years also. The speech teacher has made tons of progress with Maya and saw her every Friday. In fact, the two most common things she would tell me about school were "Alicia" (her speech teacher's name) and "granola bars". They are all absolutely wonderful!
Last Thursday was her last day of preschool and it was very emotional for us for several reasons. First, we will miss the positive influence and safety that those wonderful ladies provided to Maya, all the confidence they instilled in her and all they taught her. Secondly, it was sad because I know as the weeks pass, Maya is going to really miss school and it will be hard on her not to go back again (except maybe to say hello) and hard to explain why she isn't going back. Finally, the end of preschool means the beginning of kindergarten, totally uncharted waters for us. Although I am confident that it will go well, it promises to be a rocky transition at best.

So, all in all, it was a very emotional day that ended with lots of tears, pictures and hugs. Unfortunately, I brought my camera, but left my memory card in the card reader at home. Fortunately, Alison, one of the aids and our awesome babysitter, took pictures and we will get copies from her. So I will post them eventually. We will miss all of them dearly and are so grateful that they gave Maya such a strong and happy start in school.

My Visit to Next Year's School

2009-05-26T22:06:00.000-07:00

Three weeks ago I took the day off to take care of a few things. One of the things I did was to visit the classroom that Maya will be in next year. I arranged it all ahead of time with the lady who is in charge of the autism programs for Mesa. Fortunately, we already know what school she is going to go to, and who her teacher for next year is going to be.

The program she will be in is a self-contained classroom for kindergartners with autism. There will be no more than 9 students in the class and usually three adults in the room. Services such as speech and occupational therapy will be provided in the classroom by teachers who specialize in those areas. There are a lot of benefits to this set-up. I really like that only kindergartners will be in there, instead of K-2 or K-3 for instance. I also like that the speech and OT teachers work with them in the classroom. Maya never got OT in preschool, but she got speech, and it was great to have her teacher come right in the room to work with her.

I have taught as a special education inclusion teacher in a 4th grade room for 4 of the years I taught 4th grade and love that set-up. In that case, it meant that the small group of students I had in my class that had learning disablilities, were in the regular classroom all the time, but recieved extra support from the resource teacher at certain times, in the room. The teacher would help other kids from time to time also so that the kids recieving services didn't feel weird about it. The kids loved not having to go out. It was a great set-up and the students did really well with it.

So that day I met the teacher who is in charge, Kim, in the office. We headed down to the classroom to meet the lady who will be Maya's kindergarten teacher. She seemed great and so did all the classroom aids. The same is true for everyone who works at Maya's preschool. I guess you don't go in to that line of work without having a certain personality type. The room was full of all kinds of things that I am sure Maya will like: books, pictures, art supplies, lincoln logs, tinker toys, a big dollhouse. There were paper foot prints taped to the floor for the kids to put their feet on when it is time to line up. They were all different colors with the kid's names on them and the ordinal numbers (first, second, third, etc. ) There were all of the early math and literacy helpers on the wall like the calendar, a word wall, etc. It looked like a welcoming learning environment.

The teacher talked to me for awhile and one thing I could tell from speaking with her is that she truly takes the time to get to know each of her students' unique personalities and individual strengths. No two kindergarteners are ever alike, but I think this is especially true for this program. Although many kids with autism share some similar traits, they are as different as snowflakes. I was glad to see that she felt the same way. She also described the process of mainstreaming the kids into a regular kindergarten, which is one of the goals. She said she has a book she reads to the mainstream students that helps them to understand autism. She said the teachers are wonderful and that the other students at the school are great with the kids in the program. I stayed about 40 minutes, and left feeling more comfortable about next year.

Thanks

2009-05-26T02:49:00.000-07:00

Thanks for reading and writing all of the thoughtful comments. It is really great to feel so supported.

The Diagnosis

2009-05-18T21:50:00.000-07:00

This is a long one, but it seems like a logical first post…

As many of you know, we have had concerns about Maya since she was 2 years old, mainly concerning speech and language and her anger and frustration. She qualified for early intervention when she was 2 and a half and then for developmental preschool when she was three. Since she is going to be in kindergarten next year, they began doing a "full evaluation" of Maya in December to determine if she would be eligible for special services next year, and if so, which ones. This included an evaluation and checklist from her speech teacher, an evaluation from the psychologist and checklists from the teacher and I. We knew that we would receive the results of the evaluation at a meeting that was scheduled for the end of January. Anyway, the weekend before as I knew the meeting where I would hear the results of the evaluation loomed, I was increasingly tense, wanting to know more, but not really wanting to know at the same time.

The Monday before the meeting I left school to run an errand at lunch time and got a call from the school psychologist. She said she had the results of the evaluation, and wanted to let me know before the meeting on Wednesday that Maya scored in the autistic range. I don't really remember what all she said after that, other than letting me know that she wanted me to know before the meeting so that I didn't first hear about it in a room full of people. The emotions that I felt at that point were overpowering. I guess the most upsetting thing for me was the permanence of the word "autism". I have always heard that there is no cure for autism, and while the increase in autism cases is staggering, no one knows what causes it. I talked on the phone to Rick who helped me to calm down a bit.

Then, I drove back to school and called our school's Student Services Coordinator (like a counselor) who had already come with me to one of Maya's other meetings and was planning on attending the Wednesday meeting also. Just a little side note about her, this is her first year at my school. For many years she has taught and coordinated services at Chandler's Developmental Preschool, so she knows all about it. She offered to come to the meetings for Maya because as of early January, the plan was that Maya would go to Humphrey (where we both work) next year. Also, she has a 4 year old daughter who was born very prematurely, so she fully understands what it means to worry so much for your child. She has been wonderful for our school and wonderful for me personally, a really solid support. So I called her when I got back to work. I was a total mess, and looked like I had been crying for hours, and was scheduled to have kindergartners in the lab in 25 minutes. So our wonderful Student Services Coordinator came down to the computer lab, and said the most calming things to me and really made me feel 10 times better. She explained the difference between an educational diagnosis and a medical diagnosis. There are a limited number of educational diagnoses and they need to fit each child under the best one to qualify him or her for the right types of services. She also explained that while there is no cure for autism, a lot of kids who are labeled as autistic in the school system make lots of progress and then no longer have the label a few years down the road. Just to hear from someone that it may not necessarily be a permanent thing felt calming. She also emphasized that she was the same person who she was the day before. Nothing had changed about Maya as a result of the evaluation. Amazingly, I pulled it together for my afternoon classes.

Being a gatherer of knowledge, I immediately ordered 5 of the best-reviewed books that seemed to fit my situation on Amazon. I still wasn't looking forward to the meeting on Wednesday, but felt calmer knowing that I had already heard the results and I wasn't going to be blindsided by unexpected news. Looking back, I realized that I had always been very nervous about all meetings and teacher conferences regarding Maya, because I was always fearful that they would say they thought it was something more serious. I was relieved every time I left when no big concerns were brought up. Now the biggest worry that I had pushed to the back of my mind for the past two years had been brought ruthlessly and instantaneously to the forefront.

The Wednesday meeting was in a conference room with me, my school's Student Services Coordinator (even though she knew then that it was very unlikely Maya would be attending her school next year), Maya's teacher (wonderful), Maya's speech pathologist (also wonderful), the school psychologist (she coordinates all of the evaluations), the self-contained classroom lead teacher (Maya's placement for next year) and a regular kindergarten teacher (bless her heart, they always have to have a regular education teacher sit in on special education meetings even if the child will never be in his/her class. I've done that many times...)

The meeting lasted 2 hours and was basically a detailed description of all of my daughter’s deficiencies. Everyone was very nice, but the meeting was taking place because of all of the things she can’t do, not because of all of the things she can do. In spite of everyone’s kindness, it is very unnerving to hear detailed accounts of all of your own child’s weaknesses. Every number, score, percentage and bit of anecdotal information broke my heart a little bit more. I felt physical pain while I was sitting there. I can’t imagine walking into a meeting like that not knowing the outcome ahead of time. As I sat there, I was grateful for the strength to hold it together in front of the 6 people who were sitting with me at the conference table. I knew that would not have been possible without that Monday phone call from the psychologist. It was a very difficult meeting, the most difficult of my life so far, but I left knowing that all of the people in the room were good people who had/have Maya’s best interests at heart.

As I started to reflect back on the past few years, there were a number of “clues” that I brushed to the side or excused for one reason or another. The mind is a very powerful thing and when a person wants to convince him or herself that everything is going to be just fine, all kinds of evidence can be found to support that idea. All other evidence can be discredited or pushed aside.

The next two weeks or so were a blur. I read hundreds and hundreds of pages out of many books into the late hours of the night. I searched for and read all kinds of information on the internet. I couldn’t sleep. My mind was going a hundred miles an hour around the clock. When sleep eventually came, I woke in the night many times and lay in my bed, unable to stop crying, thinking and worrying about what the future held. I alternated between feeling slightly relieved that some of her behaviors could now be explained, and being completely and utterly devastated. The feeling that I wanted to physically shield her from the rest of the world, and not let anyone look at her or judge her or evaluate her became more intense. Although we had made an effort not to talk specifically in front of the kids, we realized that the stress was clearly showing when Shayne said to me one day, “Mom, there’s nothing weird about Maya.” The two of them have always been like two peas in a pod.

Then, as I read, and as a few weeks passed, the pain dulled a bit, and I was able to look at the information from a slightly less emotional perspective. It was truly fascinating. I began to be able to see things from her perspective. I felt an overpowering sense of gratitude to the families and the doctors who had dealt with autism long before most people even knew what it was. There is a huge body of research and knowledge out there that was unavailable even 10 years ago. The enduring energy, passion and sacrifice of these doctors and families have given us so much more knowledge than has ever been available about autism spectrum disorders. This better understanding has led to many different approaches to treating autism that have shown remarkable results.

To summarize, it isn’t a hopeless condition bound to stay the same. Some kids do recover. Some kids show huge improvements and go on to lead normal, productive lives. Some kids don’t improve as much, but their families and loved ones can learn a great deal about how they think, feel and process sensory information. There are so many factors and each child on the spectrum is so unique.

Our next step was to take Maya to a developmental pediatrician. The doctor we took her to is also a licensed psychologist. He spent about 90 minutes with us. First he spent time with Maya and I, then just me, then just Rick. His conclusion at the end was basically inconclusive. He said he wasn’t totally convinced she was autistic. He said that clearly she has some autistic traits, but that anyone can have autistic traits and not be autistic. I asked, “Can she test as being autistic now and then not being autistic in a year or two?” “Oh sure,” he said. This gave me a huge surge of energy and some much-needed optimism. Then, almost immeadiately I felt the requisite guilt for parents who are not told anything hopeful. He said since he wasn’t sure, he would go ahead and say that she is autistic so that she can get speech and occupational therapy through the Department of Developmental Disabilities. He said either way there is “a lot of hard work to be done”. There is a lot more that has happened since that doctor’s visit in February but I will post those things separately. This is getting pretty long!

I want to close this post by expressing how truly grateful I feel for having such a connected child who is good at so many things. In fact, I feel so fortunate that it upsets me to think of other families have far more difficult situations. With all the research and case studies that I have read, I realize how truly detached and unfeeling some kids with autism can seem. Maya has always had a great connection with us. She loves our attention, she plays with us and jokes and gives hugs and kisses and eye contact…so many things that mothers of children who are severely autistic do not get. And I know any of them would give anything to have a day where their child wanted to play chase or gave them a great belly laugh while being tickled or said the names of family members or looked into their eyes. We get all of those things and we do not take them for granted. I read accounts of these families with tears in my eyes, in pain, both for the children who are not usually understood and cannot communicate and for the families who feel the pain of not connecting and watching their child walk through life fearful and confused. Many autistic children never speak, or tantrum for hours, every day, or can never go out of the house without risking huge meltdowns. Many of them feel sensory overload and physical pain from things like bright lights and loud noises. Many, many families have far more difficult challenges than what we face.

The other thing that I thank God for every day is that she is in reasonably good health. Most if not all kids with autism have underlying physical problems, which Maya has had and continues to have sometimes. But, overall, she is happy and in reasonably good health. The reason it took me so long to share this is because I wasn’t sure quite how to do it or when. Then there was finding the time to set it up and write it down. The time feels right now. I will post more about what we are doing to treat Maya and how it is going soon. Thanks for reading :)