Maya's First Week of First Grade

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

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

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

The Curious Incident of the Dog in the Nighttime

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

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

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

The Dentist's Office

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

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

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

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

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

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

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

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

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

About his senses when he was very young:

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

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

Something Tito overheard her mother say to his father:

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

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

Right on the Developmental Track

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

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

The Explosive Child

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

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

The Allergist Appointment

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

Being Proactive: Preparing for New Situations

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!

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

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

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

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!