Look, Mom, No Training Wheels! Or, Singularity is in an Expansive Phase

Singularity suddenly seems to be in a phase of being open to new things. If you read my previous post, you know that he is now playing chess with Klailklop. He is also spending more and more time without his headphones. 

And now he is finally riding his bicycle without training wheels! 

This will only seem amazing to you if you know the back story. When Singularity was in kindergarten and first grade, he participated in his school's Adapted Physical Education program, in which the students worked on learning to ride a bike every other week. In the alternating weeks, they roller skated. (It has probably been a while since I have sung the praises of the services we have received from our school district and the caring and effective professionals who provide them. We continue to be incredibly fortunate!) 

Six-year-old Singularity riding his bicycle

Anyway, during his first grade year, Singularity mastered riding a two-wheeler. He was a fantastic rider. The summer after first grade, we went on a long road trip, during which we spent a day on Mackinac Island on Michigan's upper peninsula. This is a car-free island, so we rented bicycles, and in the course of the day we rode to a couple of destinations, as well as riding the 8-mile bicycle road around the edge of the island. 

Not only was Singularity a capable rider, but he also took great joy in riding. It was as if all of the cylinders in his brain and body were firing perfectly. He didn't appear to have any sensory issues while he was riding. He was very aware of what was going on around him. He knew when to slow down and when it was all right to speed up. He could respond in real-time to the conditions around him. 

Until he couldn't. 

There was a specific incident that caused him to become very frightened of bicycling. One day during the summer after his first grade year, he and I were riding on the bike path near our house, and we came to the intersection with the major road through our town. The light was green as we approached, but the walk sign was not illuminated. I entered the crosswalk, knowing that the light had just turned green and that we had plenty of time. Singularity, however, refused to enter the intersection without the walk sign. And the light turned red while I was still in the crosswalk. I had to backtrack to where Singularity was waiting. 

I didn't think anything of it at the time, but Singularity was thinking about it, and a couple of weeks later he simply refused to ride his bike again. It was heartbreaking to Klailklop, who is a bicyclist and transportation activist. Bicycling had been a rare activity that Klailklop and Singularity had enjoyed together. Such a loss. 

With me, Singularity talked a lot about how what I had done was dangerous and how bicycling in general was dangerous. I signed a contract with him and agreed not to do anything unsafe, but it made no difference. 

At one point, Singularity said that he would try riding again if he could use training wheels. Klailklop resisted that idea, as it represented such a setback. However, after about a year and a half of no bicycling, Singularity refused to ride without the training wheels. 

Autism Parent Maxim: If what you are doing isn't working, it is time to try something else. 

We finally put the training wheels back on. I think that this must have been around the time Singularity started taking Prozac and speaking to Klailklop again. He still didn't really want to ride the bike. We tried working on it in ABA, but we still didn't get very far. 

Until we did. 

Singularity had been riding his bike occasionally with the training wheels on for most of this school year. He would not ride on the street and insisted on riding on the sidewalk when no bike path was available. At first, he went out of his way to rely on the training wheels. We raised the training wheels. He relied on them less and less, and eventually it became a bit comical to see this kid riding a bicycle with training wheels that never touched the ground. We have gone on some rides of several miles with friends. But he was still not ready to take off the training wheels.  

Until he was. 

Last week, all fourth graders at his school had a special bicycling program, with an hour of drills followed by a ride in the community, on the roads. This sounded like a lot for Singularity to manage, so I got in touch with the school to fill them in on the situation -- that Singularity was still using his training wheels and that he wouldn't ride on the street. His wonderful team at school assured us that they would give him incentives to participate as much as possible in the program.

The night before the program, I was able to get him to tell me that the thing he felt unsure about, the thing that had made him want to keep the training wheels, was that he didn't remember how to get started. They clearly must have focused on that with him during the instruction part of the program, because he let them take the training wheels off! He practiced riding in the school yard with some of his classmates, while the others went on their community outing. We rode our bikes home from school that afternoon, and we have ridden every day since then. 

Yay, Singularity!!!

Playing Together

This has been an amazing week. This picture pretty much says it all: 

That's Klailklop and Singularity playing chess. Together. Maintaining joint attention for a long-ish period of time.

Last year, all third graders at Singularity's school received instruction in chess. I was never able to get Singularity to play with me, so I never knew if he had learned or not. Now we know! 

And the thing that hooked him into it was the Super Mario chess set that we got last weekend. The power of the special interest strikes again. 

Depression and Medication

I know that people are all over them map in their opinions about medication, but here is mine: I am in favor of medication. 

Of Singularity. 

Of myself.

As for Singularity, in February 2013, after he had not spoken to his father in approximately 5 months and after ABA therapy had failed to make meaningful inroads into the stalemate, it became clear that what we were trying was not working. It wasn't only that Singularity's relationship with his father was dysfunctional. His relationship to the world was too. 

The first half of third grade was a very difficult for Singularity. We were only able to get him to school kicking and screaming, at length, on the first day. His fight or flight instinct was activated in a major way. The following days were not much better. There was a lot of communication between home and the special education teacher. There were behavior contracts. And through it all Singularity insisted that he was not actually a member of the class, and he spent a lot of the time in his "quiet place," which was a dark corner with pillows. 

He was just really anxious, and really depressed. 

His developmental pediatrician suggested that we try Prozac, so we did. (He takes an extremely low dose, 6 mg per day.) And it made all of the difference. After about three weeks on Prozac, Singularity began speaking to Klailklop again. He began to emerge as a member of his class. 

I believe that we need to give our children the best possible baseline for their development in life. Prozac is helping Singularity. It has allowed him to exist on the higher end of his ability. It has raised the bar for him. We will continue using it until it doesn't help any more. Then we will try something new. End of story. 

As for myself, honestly, I don't know if the Celexa I take is doing anything or not. I began taking it around the same time that Singularity started his Prozac. There was no sudden transformation in me. But then again, February 2013 was about the lowest point for me, in terms of the degree of dysfunction between my husband and child and in terms of the burdens of being essentially a single mother who happened to be married and living with her husband. This was on top of the general stresses of parenting an autistic child, whose response to different life situations is often unpredictable. There were days when I actually took a beta blocker to diminish the visceral symptoms of the anxiety I had over getting Singularity to school in the morning. I needed a better baseline myself. And though I was feeling this acute anxiety from time to time, I am sure that it was nothing compared to the anxiety that Singularity was experiencing. 

In any case, after Singularity and I both began taking antidepressants, it got better. Singularity returned to being his own delightful self. It became easier for me to take care of him and to deal with the whole situation. Our family dynamic improved. 

I have started joking with my friends that when "they" hand parents an autism spectrum diagnosis for their child, they should also hand them a prescription for their own antidepressants! 

Overstimulation, Dysregulation and Behavior, Part 2 (Or, How to Forgive Yourself for Not Making Everything Be Perfect)

My dear friend and fellow autism mom, whom I will call Cicilia, read my account of the Great Birthday Cake Spitting Incident of 2014. See my post "Overstimulation, Dysregulation and Behavior (Or, How to Set Your Child Up to Fall Apart at a Birthday Party)". And Cicilia wrote the most lovely response to me:

I am sorry that the incident happened as I am sure it was upsetting. I have seen the accumulative effect of overstimulation in [her son Rafael] many-a-time. And I always end up blaming myself. From one loving mom to another, don't be hard on yourself!

Sometimes we have to push the limits. Sometimes the results are surprising (wow, my kid really held it together) and sometimes not so much. I feel like I hold back too much after 'being burned' or 'learning the hard way'. But our kids grow and mature.  And things change.

One of my big goals for [Rafael] is that he be able to recognize stress, overstimulation and emotion in himself so that he can express it appropriately. It will take many, many years of work. Until then, we keep plugging along ...

I am most appreciative of her reminder that we need to forgive ourselves when things do not go well, despite our best intentions.  

The support of other autism parents is an incredibly powerful thing in my life. For those of you starting out on this journey, I urge you to reach out to other autism parents to share stories with people who understand what you are going through. 

Thank you, Cicilia!

Overstimulation, Dysregulation, and Behavior (Or, How to Set Your Child Up to Fall Apart at a Birthday Party)

Yesterday was Edison's birthday party. He turned 11 last week. Yay, Edison! The party had the theme of Despicable Me 2 and the evil minions. They were on the cake, and there was an evil minion pinata. Cool. 

I had asked Edison's mom (whom I will call Suzanne) what Edison might like to have as a birthday gift. Edison is pretty familiar with all of the stuff that we have at our house, since he has been coming here almost every Tuesday to participate in Singularity's ABA sessions. So I wasn't surprised that Suzanne mentioned something that we have. I was, however, a bit surprised that she said that Edison really enjoys having conversations using our Chat Pack, a set of cards with questions intended to spark conversation. 

The party was at 3:00, so when 1:45 rolled around I sprang into action and hustled Singularity into the car. And off to Games of Berkeley we went.

If you are of a geeky bent and live in the East Bay, you must go to this store! They have games for all ages, including board games, fantasy games, brain teaser games, etc. While we were there, Singularity found a Super Mario chess set, which he wanted. This is a kid who almost never expresses a desire to buy something, so that was a keeper for us. I cannot tell you how much our family loves this store. 

Anyway, off to Games of Berkeley we went. But there was one little potential problem. I had forgotten Singularity's sound-reducing headphones. We have been working with Singularity to be more aware of when he actually needs the headphones vs. when he feels uncomfortable and uses them as his go-to comfort object. We have made some progress, and Singularity now usually can tolerate riding in the car without the headphones. Unfortunately, I didn't realize that we didn't have the headphones until I was parking. 

Games of Berkeley is right smack in the middle of noisy downtown Berkeley. I asked Singularity if he thought that he would be all right without the headphones and if he could use his hands to cover his ears. And he agreed!

This might not seem like a big deal for a typical child, but for Singularity it really is. He was being flexible about going into a situation that he knew was likely to be stressful, and he was being a really good sport about it. We completed our mission. The store didn't have the Chat Pack, but they did have another brand of question cards, the Ungame. 

After a quick stop at home to wrap the present and grab the headphones, we were on our way to Edison's house. We were a tiny bit late, so the art activity was already in progress when we arrived. Singularity went around and greeted everyone in his own way, and then we both sat down and decorated our glass bottles. Next on the agenda were the pinata and the silly string battle. At this point, Singularity disappeared into the house. Both of these activities were too overwhelming for him, so he hung out in Edison's room for a while, and I sat in the living room talking to another autism mom friend. 

Do you remember how, in Harry Potter and the Goblet of Fire, Mad Eye Moody always talks about how you have to exercise "constant vigilance"? Well, I failed to do so. 

And so we discovered that Singularity had spat on the birthday cake. Sigh. 

Suzanne was very understanding, and the other party goers just wanted to know why Singularity would do such a thing. I tried to explain that Singularity must be feeling overwhelmed, and behavior like this is his way of telling us that we need to remove him from the situation he isn't able to tolerate. And so we left. 

Well, I think that there is more to the story about being overwhelmed. We need to do some serious work on not doing behaviors that are so offensive to others. I don't think that he has a sense of most people's revulsion to bodily fluids and germs. 

Also, we have made a lot of progress in helping Singularity to let us know when he needs a break from whatever is going on, but skill just wasn't available to him yesterday. And so we continue to work on that skill as well. 

And the biggest thing I take away from this experience is that it is a REALLY BAD idea to shunt Singularity from one stressful experience to another. Of course I knew this already but obviously need a reminder. 

Not Knowing vs. Not Wanting to Answer Your Question

Singularity is a fourth grader who lives in California. All fourth graders in this state learn about the missions that were established by the Franciscan order between 1769 and 1833. Therefore, Singularity has been learning about the mission systems. 

(I just noticed that the previous paragraph took the form of a syllogism. Neat!)

A couple of weeks Singularity's class went on a field trip to Mission Dolores, located in San Francisco. We rode on BART (the Bay Are Rapid Transit train), had lunch, and then went on a docent-led tour. I went along as Singularity's aide. (For those of you just joining us on this blog, Singularity is a student in a mainstream classroom. He does most of the regular classwork that the rest of his classd does, with some modifications and with the support of a one-on-one paraprofessional aide.)

As you may imagine, Singularity was already on sensory overload after riding on the noisy and crowded train and then walking the several blocks from the BART station to the mission. The class ate lunch on the steps of the basilica next to the mission, and finally it was time for the tour. 

I don't remember much of the tour, as I spent most of my time managing Singularity's behavior. I also don't know how much Singularity was able to absorb in the half-hour of the tour that we were there for. I do know that Singularity was engaging in a lot of behavior that was telling me that it was all too much for him and that I needed to get him out of there. And so we left the tour and went on to have a much lower-stress Singularity and Mom trip home. 

Overall, I considered the outing a success, as there were many things that Singularity did well. He is used to riding on BART, so that was no problem, but he was also able to sustain a conversation with his teacher for part of the BART trip. Yay! He was also able to keep up with the group as we walked from BART to the mission. And Singularity looked at the diorama of life in the mission while the docent talked about what it would be like for an Ohlone person to be uprooted from their traditional life to become a mission Indian.

I still wanted Singularity to have more of a mission experience, so over the weekend I drove him up to see Mission San Francisco Solano, which is in the scenic town of Sonoma. It was a much calmer scene. This time he was able to listen to some of the docent's presentation. And this time he needed to leave the tour before it was complete. 

After we visited the mission, we headed over to the barracks of General Vallejo's outpost in Sonoma. There a docent proceeded to quiz Singularity about what he had learned about the mission. Singularity answered "I don't know" to all of the docent's well-intentioned questions. 

I  honestly don't know whether Singularity knew the answer to the questions. I don't know what his teacher had presented to her class. I don't know how much of the docents' information Singularity was able to absorb. But I do know that he usually knows more than you might expect him to. 

I was offended when the docent at the barracks wished me luck and said that I obviously needed it with that kid. I gave him a brief lecture about autistic children understanding more than they might show us. I didn't use the words "presume competence", but I sure was thinking them!

Word Associations and Special Interests

Singularity and I have had a word association game going since March 12. It has been a nice way for me to tap into what he is thinking about. It came as no surprise that the three things he thinks the most about are Mario Kart, Minecraft and Club Penguin, as these are his three special interests (see also my previous post, "Special Interests and Other Interests").

Here is a random page from a day when Singularity and I were playing alone, which I have color-coded. Blue is for Mario Kart; yellow is for Minecraft, and pink is for Club Penguin. 

You can see from the colors that Club Penguin is on a downward trend. Also, my attempts at steering the word association in new directions tend to be futile! 

Here is another page from a day when we were playing with a group of 8 people. 

This was fantastic! When more people were present, Singularity was really able to let go of his perseverations and respond to other people's ideas in a more engaged fashion. In fact, for most of this page, I can't even tell which contributions were Singularity's. 

Special Interests and Other Interests

Singularity has a fixed idea that he can only be interested in three things at once. I wanted to try to budge this idea by talking about how there are other things he is still interested in, in varying degrees, and there are also things that he is no longer interested in at all. So, I made little slips of paper, on which we wrote things in which he is/was interested. I could only get him to write the three current special interests. We did this in an ABA session, so his behavioral interventionist, Dmitri (for more on Dmitri, see my earlier post "Perils of Perseveration"), and I made slips for our interests as well. We filed them in categories: 

• Love and think about all of the time
• Like a lot and do almost every day
• Like pretty well and do fairly often
• Still like but do only infrequently
• Used to like and may like again in the future
• I don't think I'll ever like this again
• Never liked

There were so many items in some of the categories that I cut them off in the photos, but you get the idea. For a visual thinker like Singularity, it seems helpful to take in a lot of information in a single visual like this display of interests. 

Singularity seemed to take a bit of a renewed interest in some of the activities he used to enjoy but hadn't thought of lately. Many more things went into the "Still like but do only infrequently" and "Like pretty well and do fairly often" categories than I expected. My interpretation of this is that this exercise did make him a little more flexible about his thinking about his interests. 

The other great thing about doing this exercise with a group is that we found that we had more common interests than we initially thought. For example, we all enjoy bicycling and Spongebob Squarepants. And as each person took their turn in expressing their interests, we heard a lot of "I like that too!" comments, which led to making more little slips of paper. 

I kind of fudged the "Never liked" category for Singularity by putting one of my "I don't think I'll ever like this again" items it -- Barbie dolls. What can I say? I'm a girl child of the 70s.

I think that it would be fun, in the future, to use these slips of paper to create Venn diagrams of common interests.