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!

A Huge Breakthrough: Yes and No

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

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

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

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.