Asperger’s 101: What it was like for me in kindergarten, by Angelina

Tonight, I read “How My Autistic Son Got Lost in the Public School System.” I relate to the mother’s point of view. It is sad, and I believe her story is true for many children. I read this article aloud to Angelina. She was interested and agreed to share her thoughts about school.

In kindergarten, we had not embraced the reality of autism. To us, Angelina was shy, smart, and loved routine.

Jake Starts School by Michael Wright

She had a good vocabulary, was ahead with school topics like counting and reading and behind with social skills. It was easier to pretend at home that kindergarten would be a breeze.

I asked Angelina what kindergarten was like.

She said, don’t ask me that. Ask me about a part of kindergarten.

I asked her, how was recess?

When I was at recess when I was 5, I did not like it. I walked around. If A plays a pretend game, I do that (A plays pretend throughout recess, collecting rocks and sticks and chattering away). I did not know where I belonged.

Angelina’s teacher was ideal. Mrs S. used visual cues. She had a gentle voice. She followed a detailed and unvarying routine. The classroom was dominated by science and art. Mrs S. did not surprise them. If she had an upcoming hair appointment, she would tell the kids when they came into school tomorrow, she would look different because her hair would be shorter. She was Mary Poppins perfect. Angelina loved kindergarten but never told me what happened during the day. After school, she broke into tears easily until bedtime, exhausted from the day out of the house.

I ascribed the easy tears to the fact that she was low energy and school had depleted her (correct). I overlooked her silence as a personality trait. She was an introvert. A shy kid. I did not know at the time that she was not quiet. She was stifled. Even with her clear speech and good vocabulary, she lacked the ability to volunteer information, and to be open and descriptive. Because of this, if she was hurt or in trouble, it was not possible for her to tell me unless I asked him a direct question.

I found out about the bullying in a roundabout way. We were at the pool, and I was changing out of my wet suit. My kids stood against the stall, so I could see their feet. Max ran away (he was 3). I said to Angelina, “Angelina, don’t leave your buddy!! Get your brother!”. I hurriedly dressed and ran to the exit, expecting to see the children standing in the doorway. But they weren’t there. They weren’t anywhere. For a moment, I was at a public pool, and both of my children were lost. A terrible feeling. Then I saw them.

They were in the big pool. Angelina was pulling her brother by the back of his swim shirt to the steps. Angelina could swim. Max could not. I ran to the pool and pulled a dripping Max into my arms. He was angry that I had pulled him out. I can swim! He protested I’m a big boy! I can do it!

Not wanting to argue, so grateful that he was okay and that Angelina had done every single thing right and never left him for a second I tried to think of what to say so that it would never happen again.

“What,” I said, “what if a big kid held you down and you couldn’t get up?”

My heart was going a million miles an hour as I held my sweet boy, and then Angelina piped up in her clear voice and said, Yes, Max, like what happens to me at school every day.

My head went white. The inside of my brain only saw white. I looked at Angelina, not wanting to frighten her, and said.

“After you get pushed down at school and can’t get up, then what do you do?”

She replied, “The whistle blows. It is time to line up.“

That’s when I found out that she was bullied at school. I asked her a direct question. It unlocked her words, and she told me.

It had happened for weeks. An older boy waited for her in the hallway, or she waited for the boy. I actually think she started to wait for the boy, that she had made it part of her routine. She would wait by her backpack in the hall, away from the teachers. They were supposed to drop off their backpacks and go outside for playtime before school. And an older student would growl at her, knock her down, pin her to the ground. It bothered him that Angelina did not respond to him and answer him. It made him mad that even when he was knocking her down, my daughter remained rigid and silent.

At least, that is how I imagine it.

I imagine some parents would have been mad. I know I was mad, and then I realized that this might happen yearly. I can’t afford to be mad. Mad doesn’t help her. So we worked it out; that’s another blog post. Suffice it to say the school was great, and the bullying stopped. The day I found out she was bullied was the day I decided that since she would not fit in, she was going to learn to be a leader because bullying is a dance between the bully and the target. I needed her to learn how to not be a target. I needed her to learn how to be herself. No stifling. No shame. Help her find her voice, so I would not have to worry about asking her the right question to unlock her story.

I don’t like to write such a personal story about Angelina. I hope it sticks in your head. Especially the part about being able to talk and having a great vocabulary but not capable of asking for help.

Speech and human development are marvelous, complicated things.

You may not want to know if your child is autistic, but whether I knew it or not, she was. She was born this way. Allowing myself to be distracted from the truth that socially, she was lost and, in group settings, he was overwhelmed did not help him.

I asked Angelina for 5 things that she needed help with when she was in kindergarten. Even if you can’t order up the perfect experience for your child, this list can help give you an idea of how granular and immediate the needs of a 5 year old are. A quiet room, a quiet seatmate. The reassurance of routine.

1. A detailed schedule that does not change.

2. A quiet classroom; I like it when the kids are quiet.

3. I liked sitting next to A. She is quiet.

4. I like my teacher to have a soft voice. I like it when she claps to get orders instead of using words.

5. No loud cheering or clapping or bell ringing.

Thanks for taking the time to learn what school was like for her. I hope it helps you understand the autistic child in your life. Perhaps your child’s classmate or student of yours? Perhaps your own child?

Asperger’s 101: The importance of role models

Asperger’s 101 is a series to dispel misconceptions about Asperger’s and Autism in general. I write this post with the help of my 7 year old son, Brady. I could not express these opinions without his input or approval. This is a record of our experience. 

Part of an ordinary childhood experience is wanting to fit in. It is hard to fit in when you are 7 and you have Asperger’s. Hard but not impossible.

Brady stopped playing Minecraft and embraced science more after he watched Jake’s videos. Jake decorated his bedroom to look like a science lab, so Brady asked for the same thing. Maybe that will be another post. Here he is taking baby Abby to “outer space” during her visit.

We looked online until we found other boys that love science and math, and also happen to be autistic.

Jake Barnett loves Astronomy and talks openly about his autism. Jake accepts himself and is happy. Jake is important to my son.

Jake Barnett is in his early teens. Jake is one of the first kids that Brady found that he can relate to — here is a boy that openly says “I”m autistic” and “I’m happy”.

Dr. Mad Science is another role model for Brady. His name is Jordan. He is a normal kid, surrounded by family and friends and treated with acceptance. He is autistic and he is happy.

Joey Hudy lives in Phoenix, AZ. He found a community of peers at Maker Faire and the Heat Sync Labs. He is an Aspie. He is paving the way for Brady, showing him you can be a kid and have fun!

These boys inspired Brady to lead science projects for his class at school. So far he has demonstrated two of Dr. Mad Science experiments (Lava Lamp and Milk Fireworks) for his 2nd grade class (another great science resource for us is Steve Spangler). The experiences helped Brady connect with the kids in his class.

Because of Joey, Jordan and Jake, Brady is open to tackling clubs, projects and group events. Here he is playing with a simple electronics kit. His frustration has abated and his identity as a normal kid with intense interests is emerging. Yes, he’s still autistic and still has to battle meltdowns and social challenges but the unnecessary burdens of alienation and loneliness are erased.

But most importantly, these boys keep Brady from feeling alone. He can relate to them and since he found out about them, he is a happier kid. This is not something I can do for him, this is something his community does for him. Thank you to all autistic kiddos who make and share videos online, I am so grateful to you.

Mom note: My awareness of the importance of autistic role models for children with autism is courtesy of Karla of Karla’s ASD page. I read Karla’s page every day. She is an immensely valuable resource. If you have time to read/follow her on Facebook or online, I think you will enjoy her too.

Asperger’s 101: What it is like to go to a new place

Autism 101 is a series to dispel misconceptions about Asperger’s and Autism in general. I write this post with the help of my 7 year old son, Brady. I could not express these opinions without his input or approval. This is a record of our experience. I am not an expert. I am just a parent telling my story.

This is how it feels for me to go to a new place. This is not exact because I can’t show you what is in my head. This is just a sketch to give you an idea. I think in parts and build my pictures piece by piece before I can see the whole.

I am someplace new.  I don’t know what it is yet, I am building it up from parts so I understand it.

I don’t see The Big Picture in a new place. I see parts. I have to see all the parts and put them together before I understand. If it is too much then I close down and don’t take it in. This is normal. If you see too much light, don’t you turn your face? It is the exact same thing. I take many small parts and put them together to form the whole. This can take a long time. It can take months.

The next time I visit, I see more.

I can’t turn my way on and off. This is how it is for me all the time. In a group setting or a new place, this is a big challenge. I only see parts of the room. Like a shoe, or a book, and so on the room reveals itself as I process each piece. I try to keep most of my day the same and only build in a few new experiences. That way I don’t use up all my energy.

I’ve been here a few times but I don’t have the whole thing yet. I am not comfortable yet.

At school the kids talk to me and I don’t answer all the time. I don’t answer if there is too much going on. That is another story for another time.

It’s a house. I can see it now.

The more things to identify, the harder I have to work. I like uncluttered spaces. I like clean shapes. I like order. If you take order away from me, I get lost. I think most kids learn best when it is peaceful. It is not just me.

This is a house. It is made of up many elements.

It can take me the whole school year to learn my classroom. In kindergarten, I learned the desks and chairs well before I learned my classmates. My mom thought it was strange that I knew the teams, the structure and the elements of the room and not the kids. I thought it was strange that she knew so much about the people in my room but so little about what walls and how the room was arranged.

Did you notice that the doorknob was taken out? It used to be there. I noticed.

I hope this page helped you understand what it feels like to wear my brain for a time. Thank you for visiting. I like to see my visitors from all over the world.