Tuesday, October 19, 2010

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.

Wednesday, May 19, 2010

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.

Thursday, May 13, 2010

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.

Monday, March 22, 2010

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.

Tuesday, March 16, 2010

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.

Sunday, February 21, 2010

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.

Tuesday, February 9, 2010

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."