Musings

Being Touched-Out.

Autism, Family, Musings Leave a comment

I am touch sensitive. I enjoy soft, silky, and smooth surfaces. I love the feel of plush, or a good hug from someone I love. I love the feel of bark, and soft grass on my feet. On the other side, the idea of certain textures makes me shudder; wetness, slime, ooze, chitin, spiky, or shag. yuck. Even smooth bumps, like glossy stones pushed together give me the willies. The idea is bad, the sensation of touching them is worse.

There are these smooth bumpy stones you are supposed to walk over to relieve stress or massage your feet. They hurt massively. Like I mean I cannot walk on anything after I use those.

I am also extremely ticklish to the point of pain. I have never been to a masseuse, because the idea of a stranger touching me makes my skin crawl. I have this image of me laying on the table all ready to have my muscles soothed, and then they touch me with their cold hands and I involuntarily twitch off of the table. My best friend in High school used to call me “The Royal Tickle-Me-Elmo.” (If you don’t get the reference, please google it).

There is another side to this, that comes into play. Social. As a teacher in Asia, the children are always trying to hug you, and poke you, and push you. In Korea they have this “game” called a Dong-Shim. The children put their hands together with their pointer fingers pointed up, like a gun, and then try to shove that into the butt of the closest person. It’s horrid. In China, the younger kids often see you as a surrogate parent, and try to hug you. By the end of the day, you just don’t want to touch anyone or anything. You are touched out. I love hugs from my family, and people I trust, but others I have to mentally brace myself for.

When you are young, it doesn’t take very long to be touched out.

This week at church, there was a little boy, about 1 years old. Sweet guy. But he immediately latched onto my daughter. All he was doing was hugging her, and taking her finger to lead her around. He would gently push her to sit, so he could sit with her. But within 20 minutes, My daughter was touched out. She began trying to escape, and ended up having a short breakdown.

I took her outside the room to the water machine. She sat there and tried to just feel the space around her again. She was afraid of going back in with this little guy because he wouldn’t give her space. This is not the first time this has happened with her, so I knew what she needed. She used to have these troubles when playing with certain friends in Preschool. She didn’t want to be rude, either time, which made it worse.

The trouble is just that. When it comes to sensory sensitivities of any type, we don’t want to be rude. We are often afraid of offending, or scaring off potential friends. In the case of the little boy, she didn’t want to make him cry. But then, in order to be polite, or accommodating, we tend to let ourselves get pushed beyond our threshold. where the sensation is no longer an irritation, but becomes a source of panic.

People who don’t understand these sensations often misinterpret them as being rude, or mean. And this is where our fear comes from. “He’s just a baby.” or “They just wanted a hug.” looks innocent enough, but if you are at your threshold, one of 3 things will happen, and none of them are great:

  • Try to get away from the source of irritation. This can be trying to leave, but if the source follows you can lead to a panicked push away or a yell to get away. It is often the last choice before one of the other two happens.
  • Melt down. Collapse and cry. This often happens without choice, but is terrible because if you are melting down from too much touch, people want to console you by hugging you.
  • Shut down. again not a conscious choice. This involves your brain stopping, and you not reacting to the outside world. If continues for a while as you try to get your body to reactivate. Again, people may try to hold you to touch you to get your reaction. Which makes it last longer.

One of the worst things when working in a public space like a school is people don’t realize that crowds make things worse. If you have neurotypical children in a class, and autistic children in the same class, you have to spend a lot of time teaching both how to handle situations.

When an autistic child is having a meltdown or shutdown, it draws the attention of the whole class. Everyone is worried, and so everyone stands around them. Crowding them in, making the panic attack worse. I have to often herd the children away and ask for help from other teachers or admin to help move the children away. I have had days where I had to just lay down next to the child, and breathe slowly, so they can focus on the sound of my breathing.

On the flip side, I have been touched-out early in the day before. It happens from my sound sensitivity too. I’ve collapsed into a crying mess in front of the children. I am not a loud crier usually. I just flop-sit down, usually on the floor, and focus on my breathing as the tears flow. It does not happen often. But I have talked with my students about what they need to do if this happens.

I always pick a couple of students to lead. They make sure everyone is back at their desks giving me space. Then they try to get everyone quieter. I can usually function to a degree after a couple of minutes, but this took a long time to reach. There are still some days it takes me hours to be functional again.

My daughter has not learned these skills yet, and is not even comfortable setting her boundaries yet. I hope that I can help her learn to know when she is getting near her limit. I hope I can give her the confidence to say “No” when she needs space, or to just find a quiet space.

I don’t know how yet to teach her these, and am learning myself. My parents didn’t know how to help me with this, and my school councilors only focused on my speaking, reading and writing. So I am completely self taught.

The world is better equipped to help my daughter than they were to help me. Unfortunately, ignorance still pervades.

Until the world catches up, I will be wrapped up in my blankets. I will be teaching my children that its okay to do the same.

Recess

Autism, Musings Leave a comment

A few days ago one of my students asked what my favorite thing to do at recess was. I had to tell her that as a child I didn’t like recess. I don’t lie to my students. She asked for more details and I let her know that I didn’t have my own friends back then. This is not entirely true of course, there were periods in elementary that I did have friends. These didn’t last long, and I mostly hung out with one of my brothers’ friends.

Then last night I began reminiscing about back then. My situation was not entirely due to my autism, but I am sure that it exasperated it. I moved to several elementary schools when I was young. In my 8 years of elementary, I had at least 4 schools. (Grade 7 was elementary when I was young): Steeples, Sparwood Elementary, Gordon Terrace, Amy Woodland. I didn’t really have much time to make friends at each.

I remember specifically at 3 of these schools I would spend my recesses walking circles around the entire school. Every recess I would walk in circles watching others play. Sometimes I was alone, sometimes not. I remember at Amy Woodland, I would have one of the parent volunteers walk with me. Mrs. Nadeau. I also remember having a girl named Tanya check up on me several times.

I remember having a kind of phobia relating to group play. If I had 1 or 2 people to play with I was happy, but any more than that and I would start to panic. Team sports in P.E. class were tough for this reason. I remember having 2 boys I thought were friends tell me once that they couldn’t play with me anymore. I never found out what I did to make them say that.

I remember having my blackouts every now and then during elementary. Something or someone would get me so lost in my head I would actually blackout and my body would react to things. I used to believe I had a monster hidden in me. Some of the things my monster did, that I don’t remember, but I was told by either other kids, my principal, or my parents include:

  • hitting a child in the head with my metal lunch box.
  • running away from a group and smacking into a wall at full speed.
  • running away from another child / group and running into a tree.
  • throwing a rock on the school roof, which slid down and hit someone on the head.
  • kicking a metal door repeatedly
  • throwing someone into a snowbank.
  • headbutting someone.

Once I was so stimulated, that I knew I would black out and I was terrified, so I walked as fast as I could away from a group, and ran into my cousin. (I think it was my cousin). I remember yelling at him to hit me, and screamed at him to hit me. Eventually he did, and I lay on the ground clutching my stomach. The pain helped me focus and block out all the other sensations. At that time, I remember thinking I deserved it.

That cousin (step-cousin actually), never played with me again. Not at school, not at home, not at family gatherings. Another relationship destroyed.

I didn’t know how to be a good friend at that time. I didn’t know what was expected of me. TV & Movies didn’t help explain that stuff, and books didn’t either.

As an educator, I watch close to see if my students ever need an ear. I am still often oblivious to what they are really feeling, or need. My students over the last couple of years have asked me several times, “Mr. Chad, Why do you keep asking if I am Ok?” It’s usually because I misread a situation. I’m older and more experienced, but still cannot read facial expressions perfectly yet. But I would rather ask, than not.

I have a student this year who loves to stay and read peacefully in the library during recess time. I always remind him to keep an eye on the clock, which of course he doesn’t. I think back about how nice it would have been to just have a quiet room to read in during my recesses. Maybe my monster wouldn’t have been so bad.

The problem with moving.

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As I think forward to the concept of moving again, I reflect upon the difficulties this will present. I also think about the difficulties it has presented in the past.

My wife and I do not enjoy moving, in fact we detest it. Even if our living arrangement is not ideal, the idea of packing everything to move is more frightful. We would rather repair, and disinfect a place ourselves than to move out of an unhealthy situation. We have done exactly that in the past.

While living in ChaoYang, I had some serious difficulty with a coworker at that time. We had a mold issue near the living-room window, the apartment only had 2 bedrooms and a large living room. When we moved in there was a broken kitchen counter, and the gas range fan was caked with an inch of grease.

We repaired the counter using my tools, fixed the toilet flush. And spent nearly a whole day scrubbing the grease off the kitchen exhaust fan.

We had our routines that we loved though. There was a wet market around the corner that we could get almost anything we needed. They had seamstresses for clothing repair. There was fruit and vegetables and fresh meat on the first floor. They sold basic furniture, electronics, blankets, curtains, and everything you needed for a home. They had a pet store, and seafood. There was gardening equipment, and home-repair tools. A whole floor of stationary and decorations for festivals. We loved going there all the time.

There was a supermarket across the street. That building had food booths, and restaurants. every Canadian Thanksgiving we used to go to a certain restaurant we called “The Red Restaurant” because of the sign. They had a Tailor, and pharmacies there. We knew exactly where everything was. Unfortunately the supermarket itself shrank twice while we were there. It began as a 2 floor market, then it shrank to just the first floor. Then our last year there, it shrank to half the first floor. Piano schools, dance schools, and science academies moved in upstairs.

There were two malls that were a short walk away, and we enjoyed walking there as a family. These malls, had movie theaters, and cat-cafe’s. You could sit with your drink and pet a cat. There was a lot of things to do there, including eating, board games, VR games, a couple large playgrounds for the kids and more.

Just around the corner was a great street food culture in the evenings. If we didn’t feel like cooking, we could just walk down the street and buy a large variety of food. All of these little food carts would appear in the early evening, and some of the foods were amazing, and cheap.

After moving to the ShunYi area, we have gone to visit the malls and the wet market in ChaoYang a couple of times. But we have tried to build new routines here. It has been hard, however. ShunYi, while more spread out and suburban, has less things like home repair and tools shops. It took us a while to find good green grocers, and there isn’t a large mall nearby. Instead there is a cosmopolitan shopping plaza.

This area is more expensive than ChaoYang, and it took us a while to get used to it. There is a lot more variety in restaurants and coffee shops. The plaza has more things for the children as well. They can buy birdseed and feed pigeons at “Pigeon Plaza”. There is an outside playground surrounded by a permanent farmer’s market. The plaza has 2 trains for families to ride around on.

Unfortunately some of the difficulties in our routines that arose is change. For the first couple of years we would find a coffee shop, grocery store or restaurant we liked, and it would disappear, or get down-sized and moved. For example there was a great restaurant / cafe next to a fountain plaza. They had an amazing bakery, and excellent fried chicken. after we had been patrons for about 7 months, (Bare minimum to make it a routine), it closed and moved practically next door. Now it is 1/4 the size, has no bakery, and no restaurant. They sell coffee, ice-cream, and sandwiches now.

Our second favorite cafe did the same a few months after that, and moved to the far side of the plaza, a good 20 minutes walk through the compound.

Now My wife and I consistently go to a cafe attached to a book store. It has survived.

But now, we have given notice to our school that we plan to move after this school year. My son has graduated, and we wish to get out of Beijing. While this is exciting, it has already begun to cause fear in my family. We don’t know where we are going yet. We don’t know what type of place it will be. We don’t know how long we will be needing to get acclimate to the new area.

My wife and I are both quite nervous about this, and I we still have 6 months left at this house and school. We have both lost sleep over this, but we made a promise to ourselves that we would leave Beijing.

I feel that even if we stayed, our family dynamic is changing as my son will be a legal adult. And this in itself is a very scary point for us. While he plans to have a gap year to focus on language learning, things are different.

Can we get him a visa to stay with us next year? Can we find a language school for him? Will he have to move out to another country? Is he ready to go out on his own? Have we taught him how to handle himself and his difficulties well enough? What support will he have if he’s out on his own?

If I’m still having trouble setting up and managing myself and my difficulties, how is he going to do?

And this all causes other issues. The more I worry about things, the more I get distracted, disorganized, and lost. I have been needing my personal space, and my huggables more often.

Most people don’t realize this, but it causes me to have more indigestion and heartburn. It also causes me to have more balance issues. (Both of these will be discusses in other articles.)

So as I look forward to the next school year, I need to sit down to put on my shoes more, and rely on my akla-seltzer tablets more. I also get lost in my classroom as I move from my desk at the back to the front of the room. I tend to head back to my desk 2 or 3 times now to get papers and material I prepared and forgot about. I need my alarms more to remind me when I have to finish class, or go get the children. And I need to sit down more when I am on duty watching the children outside.

At home I feel more sluggish in making decisions, and just want to find that next job so I have an idea of where we will be going to.

Wish me luck.