It took me five tries to actually read the whole letter. I had seen it on a few friends’ facebook pages and glanced at it, but I just could not bear to read such complete hatred for another person, especially hatred for someone with autism. If you have not seen the letter and have a strong stomach, you can read it here.
One of my problems with the letter is it confirmed something I have known for years. Those looks–the ones we have gotten in stores, on the street, at the playground, at church–some of those looks match this woman’s words. I had hoped I was interpreting them incorrectly.
I was hoping I was being overly sensitive. But in the pit of my stomach I have always known some of those looks have questioned Peter’s humanity. They have put him in a different category and it scares me. It scares me that people can hate Peter for his noise level when he is stressed. It scares me that people can not separate Peter from his behaviors.
He is a gentle soul trying to figure out how to live in a world that is too noisy, too busy, too fast. When all those things overwhelm him, he then becomes too noisy, too quick to react. He is trying to learn how to handle this world of ours and we are trying to give it to him in very small doses so he can adjust.
I am not going to respond directly to what this mother wrote about another child. I do not think her hatred merits a direct response. I am going to address all the parents who have special needs children. Peter has helped me look at everyone with a more patient heart. For every look that stings know there is another parent who has caught you doing amazing things for your child.
Know that I smiled as I walked up the grocery aisle after watching a Mom gently redirect a struggling child for what must have been the tenth time. Know I said a little prayer for the Mom who looked so tired as she tried to quickly drag her sobbing child out of a loud party. Know I smiled at your little girl who could only glance over at me, but desperately wanted to connect.
Please know that the letter writer is not alone, but neither are you. There are many people who appreciate what you are doing for your child and are taking the walk along with you.
Peter wanted to be Batman. He talked about it for weeks. When we went to get his costume they were sold out or that is what the salesman said. The costume was sold out, but the masks, belts, gloves etc. were on the wall in droves. I started talking to Peter about how we could put it all together ourselves.
By then, Peter had talked himself out of the Batman costume. He still wanted to be a hero though. He pounced on the Indiana Jones hat and whip. Peter decided he was an even cooler hero because he was just a person that did hero things.
I knew quite a bit about Sandy before she got anywhere near the northeast. Peter, my in-house weatherman, was tracking her closely. His vocabulary grows with each storm. “Collide means crash into each other, right Mom?” That question made me think, maybe I better find out more about this Sandy, but I had a hectic week and company visiting from Germany, so I gathered information slowly as Peter offered it.
“Mom, Sandy is going to be rough. She is HUGE.” I asked him when he thought it would hit. “They think Monday. The Germans should be able to fly first.” How did he know I was wondering about that since our friends were flying on Saturday.
“Mom, I think we need a hurricane ready kit.” I asked him what he thought we should have in it. He listed water, batteries, flashlights, our crank radio.” Great, Peter was really getting us ready. Then he got his sisters in on the ready kit. Again, I could push the concern off a bit, we were doing what was needed.
At one point, Peter told me–“a two day hurricane, I don’t think I will last that long.” That day I googled Sandy to get more information–two days, really? Sure enough this storm was looking like it was really headed straight for us and going to be hanging around awhile. I was glad we were getting ready.
By the weekend, I had to give the storm some real attention. When Peter saw me watching the weather, he told me I needed to stop worrying so much about the storm. It was one of those who are you and where is Peter moments? I listened to him right away, telling him I had needed some information, but he was right I did not need to worry. I stopped watching. At another point, he saw me monitoring the early part of the storm and told me that hearing about the storm was making him nervous, so could I stop please.
There were times he was much less rational. He would practically cry why did Sandy have to stay so long or was Sandy ever going to leave. He would ask time and time again if we were going to lose power. In fact, Peter did not like the answer that I was not sure. He told me I am supposed to know everything.
When I told Peter that weather was hard to know, he asked if we could call God and ask him about Sandy. “I wish we could and I had a few other questions on the list too.”
“No, really, Mom, why can’t you predict the weather?” He was terribly frustrated by the whole thing.
My friend Katie suggested a chart to make the time more manageable. We broke the two days into 4-hour intervals with a long interval called overnight. Peter would check each one off and know we were getting through the storm. It helped him see he could make it through. He also watched a few weather reports and asked if Sandy was “raining herself out?”
Throughout the two days he wore earphones with his electronic games or the noise blocking ones, depending on what he was trying to accomplish. He was in sound control. A few storms ago I told him about Dr. Temple Grandin and how she is a lot like him. She doesn’t like noises and she feels things the way he does. I told Peter how she said he needed to be in control of the sounds for the weather to be less nervous. It has really helped. He even said to me “Who is that person like me again? She says I should control the sounds right?”
So weatherman Peter was in as much control as he could be. He had a kit ready. He blocked the sounds. He and Kit even made a weather video at one point.
Peter also listened to the weather people comparing storms. He can name quite a number of the hurricanes by name, location and year. For some of them he even knows what category they were. Peter says “Gloria was a gentle hurricane right Mom? Sandy, she was not gentle. She was really mean.”
Today I came across Peter’s school journal. To get him writing, the book he used gave the lead sentence.
His essays show that you get information from Peter very differently depending on how you help him start.
Take a look at a few. The part in all caps was already written. The rest is Peter’s, including spelling and punctuation.
TO GET A GOOD NIGHT’S SLEEP YOU NEED… to make your eyes closed. Pajas to get you warm. Get in bed. I say my nighttime (I think he missed the word prayers).
THE LAST MOVIE I SAW THAT I REALLY LIKED WAS…The lorax. It was a great film. It was based on the book by Dr. Seuss. The tiny orange guys name was Lorax. It was so funny.
AFTER A RAINSTORM, I SOMETIMES SEE…a rainbow. The sun comes out. The sky gets blue or dark. After a evening thunderstorm I saw the moon.
When the topic made him think in a specific way about bed, he was very specific. When the other two essays gave him a word like sometimes or stayed open ended about the movies, Peter gave more information. His thoughts did not get boxed in.
This made me think about how I ask him questions and our conversations. I have to try to stay open to give him the chance to do the same. When he was younger I had to stay very focused to get him to talk at all. Now I have to be the one to change to help him grow too.
We are in the processing of reorganizing some things around here. Peter and Kit decided to take on their own project of organizing Peter’s video library. Peter even wrote labels for tapes which no longer had boxes. They used masking tape and put it along the side of each tape. Just that they could get the tape to the right size amazed me.
Kit and Peter arranged the shelves and handled the whole project with no parental involvement. They also stuck with it from beginning to end without being kept on task.
When the project was done they made everyone come view the library. I must say we were impressed and could understand why they were excited.
Peter has always loved categories. When he was little he had very little language, but he would categorize family members. He knew who was Daddy’s family and who was Mommy’s family. He would play the game of naming family members longer than most other games.
He is categorizing his videos based on what channel produced each show. He also knows in what order they were created. Peter told me he watches the end of each show to see the dates of when they were “born.” He is starting to learn Roman numerals so he can figure out those dates too. He does better with those after 2000. The 1990s put an awful lot of letters across the screen.
Now Peter wants to work on organizing the larger media library in the family room. I am also glancing at the library in the living room and thinking we could keep the children busy for weeks if we give them a couple of shelves at a time.
Hopefully he will want to read as he organizes, just like we have watched quite a number of videos this week.
We are waiting in the car to pick Charlotte up from dance. Peter and Kit are filling in Peter’s calendar on his tablet. I can not believe how many dates he has in his head. He knows our birthdays, our anniversary date, that Thanksgiving is ALWAYS the fourth Thuraday of the month. He also unfortunately remembers what age we will all be, so his calendar says Peter’s 12th birthday. Mom’s xx birthday. When he put Charley’s in he said “Wow, your daughter is really growing up.” When he put in our anniversary he asked how many years we were married this year. Then he said, “Oh my gosh 21 years next year, you are going to turn into Grandma and Grandpa.” Sigh
Thanks to the encouragement of many readers, It’s The Little Things is now a blog. The goal is to continue sharing our stories so others can not only understand autistic spectrum disorders, but appreciate the struggles and accomplishments, big and little. Please feel free to join in the conversations.