In the universe's divine timing, on the very day I told my co-workers that Troy has never been invited to a classmate's birthday party, he receives a birthday invitation! I was so excited to see that superhero themed sheet of paper stuck in between all of the papers that had come home in his backpack today. I asked him if he wanted to go to the party, and he said yes. I was thrilled. I didn't have too much time to bask in my happiness and excitement, however, because I had to get to the second grade curriculum night at the school.
When I got to Troy's classroom, I took a moment to look around. I noticed a poster on the wall that listed the birthdays of all the students. I looked at October, expecting to see the child's name from the birthday invitation. It wasn't there. I started to panic. I thought back to the invitation I had left sitting on the counter. Troy's name wasn't on it anywhere! What if he hadn't been invited to this party? What if it was a mistake? What would I do? (Side note: I have a tendency to jump to the worst-case scenario.)
So, when I got home, I immediately asked Troy about the boy. I asked him how they know one another. He couldn't answer me. I asked if they had been in kindergarten or first grade together, and he said they had not. He told me that the child had given him the invitation before school in the cafeteria. I was terrified again that a mistake had been made.
So, after bedtime, I called the number on the invitation. I explained to the mom what had transpired. She laughed and said, "Let me give you some background...." She proceeded to tell me that her son had never had a birthday party with invited peers before. She said he has autism--Asperger's Syndrome--and that they were nervous about how this would even go. He gets overwhelmed by noise and groups. She had given him 25 invitations and told him to invite his classmates and any friends he wanted to. She told me that she was confident he was invited.
I could hear my voice crack as I said to her, "Let me give you a little background for Troy...." I told her that just last week I had been at an ARD meeting, where we discussed and worked out the detials to move forward in assessing him for Asperger's Syndrome. I told her about Koby, too. In our discussion, we tried to figure out how they might know one another. We figured that it must be from working with the behavior specialist on campus.
She told me that the party is the afternoon of the Autism Speaks Walk, which they are attending. She told me that we were absolutely welcome to come over after the walk and before the party for the boys to spend more time together and so Troy could get comfortable in that setting.
I was trying so very hard not to bawl the entire time. I could hear my voice crack over and over again.
I thanked her and told her I was so excited to meet her and her son, and we hung up. A few moments later, I received a text message from her. It said her son had told her "Troy is his friend and rides his [special education] bus with him." It gave me even more peace of mind and such joy that these two children have found one another. I'm hoping it's the start of a wonderful, unique relationship! :)
Today is my birthday. It has not been a terrific day. I woke up with a horrid headache, one of my uncles died this morning, a second of our four new fish died, my daughter took her pull-up off and wet the bed, I ran a red light and will now be receiving a ticket in the mail...you get the picture. Then, this afternoon, it got even worse. My office phone rang, and when I answered, I heard Koby's teacher's voice on the other line. "Koby had a rough afternoon," she said.
She went on to describe a meltdown. She could not identify the antecedent but said transitions were very difficult for him. It was long-lasting, and he knocked several things over. She said that she remembered me telling her about his meltdowns, but until today, they hadn't seen it. (Side note: His meltdowns at school last year were incredibly destructive and long-lasting.) None of the techniques that have worked for him for the last several weeks were effective. And when the day ended, and they were waiting for the bus, he shoved another child in his class-a child the teacher said he gets along with-hard and with no provocation. She said that he was very upset when he got on the bus.
Of course, I was sad to receive the call. His meltdowns are much less frequent than they were when he had no or little language. But every time there is one, I feel as if we're having a tiny setback, and it highlights the powerlessness I sometimes feel about the disorder. And in my 'woe is me' attitude I was having about my birthday, I took it even harder. I called home to let the care provider know what happened at school and to be aware that he may have a difficult afternoon and evening at home.
I got home very late from work, which made me quite sad. I walked into the living room, and the kids were all hiding in the couch cushions to jump out and yell "Surprise!" at me. Koby hid, too! There were cards and cupcakes waiting for me on the table. Tom, my boyfriend, Ms. Donna, and the kids sang to me, and we ate cupcakes. It was awesome! Ms. Donna stayed late, so Tom and I could go to dinner.
When we got home, I remembered the meltdown.
Koby's teacher sends home a daily report for him, and on the back of it, we are supposed to report on his night and return the form the next day. I asked Ms. Donna, to help me fill it out. As she rattled off the details of his day....about the books he had looked at and the difficulty he had transitioning to his speech therapist's visit, she suddenly said, "Oh! When Koby got home, I asked him, 'Were you upset at school today?' and he said, "No! I was mad!"
Four little words MADE my entire day! Not only did he respond, he responded in a meaningful way! Four little words gave me complete peace about his meltdown. Four little words made me reconsider my entire viewpoint on my day.
I did wake up with a horrible headache, but Tom brought me coffee in bed! He made my cup of coffee for the road and put it in my car. When I got to work, my co-workers had an adorable-and HUGE balloon in my office. I was treated to lunch at Fuzzy's! I have received more Facebook posts, e-mails, phone calls, and texts than I can even count, I had my sweet, hilarious children sing to me, I had a nice dinner with my boyfriend, and he surprised me with a sparkling clean bathroom!
So often, I obsess over the negative things that are happening. When I stop feeling sorry for myself, and look at all the blessings I have, the wonderful people I have in my life, and, most of all, my amazing children, I have to say that I had an amazing birthday.
I originally wrote this back in June 2011. As I read the words again in September 2013, I find that it still rings true. It may shock some people to hear a mother say this, but I do believe that autism can be beautiful. Read my words from that summer day, and I hope you will agree........
I often grieve for Koby's autism. I'm not proud to say that. Maybe I should be a super mom and never get sad about his delayed development, his trouble with socialization, or how difficult Troy and Laura sometimes find it to have a brother like him. I shouldn't get frustrated when his tantrums last
an hour and he has destroyed several books and toys....and often several times a day. But I'm not a super mom.
And I know Koby is lucky. He is not as profoundly autistic as so many others. He does make eye contact, he does hug me, he is trying to talk. So, please know I already know how blessed I am....not only because of the things Koby does and is capable of, but also because Koby is Koby.
He has the most beautiful smile I have ever seen. His laugh is seriously contagious. He finds joy in so many things, no matter how mundane. He has an amazing spirit. But now, I'm going to say something that may surprise you.
Autism can be beautiful.
I've spent the last several hours thinking about the fact that along with all of the sadness I feel about Koby's diagnosis, I also find so many opportunities
to find true beauty and blessings in my life with autism.
I spent today at my mom's house, and we took the kids to a splash park. What I witnessed was truly beautiful.
Koby sees the world in a completely different way than anyone else who was at the park today does. And I can't attribute it to his delayed development because there were younger toddlers there. I studied all the children there, and I can tell you that none, despite their smiles and laughter, had as wonderful and as beautiful experience as Koby.
He was genuinely surprised and excited every single time the water would reappear. He wasn't running and jumping in the water. He didn't try to splash
other children. He didn't do anything the other children did. Yet, he delighted in the entire experience.
I wish I could put into words what I felt watching him. I'm trying and failing miserably.
Koby stood out from every other child there. They were sure of their actions, sure of what was happening, completely aware of the other children
around them...they were having fun.
Koby was engrossed in the water, engrossed in the experience, and his eyes and smile were unlike any of the smiles of the other children. I felt so blessed to be with him, to witness his pure, innocent joy and appreciation of the moment. And I knew that without his autism, that profound connection and joyous interaction with the water would not have been there.
I feel almost blasphemous writing about autism being a blessing. But if you ever have the opportunity to spend time with my son and to witness his innocent passion and joy come out, I swear you will find it to be the most beautiful thing you have ever seen.
I have been asked several times why I wrote my book. Many assume that it is because I have a child with autism. Actually, It started with a class project. I was working on a Master's degree at the University of North Texas in Autism Intervention. I was assigned the task of coming up with a way to spread knowledge about autism to the public.
I had read that kids with autism are bullied at an alarmingly high rate. (Click here
for a CBS news article on the topic.) It dawned on me that perhaps if kids were better educated about the disorder, the bullying rate might go down. So, I decided to write a children's story. My professor gave me a great grade, and after some thought, I decided to throw my hat into the publishing ring.
The process has been long and full of many ups and downs, but also very exciting! I'm terrified that people will not like it. I'm hopeful that people might. Most of all, I hope and pray that it keeps at least one child from being bullied.
You may have read or seen on the news the horrible letter that a disgusting human being put under the door of a home with a child with autism. If not, I have posted it below (If it's too small or you'd like to read more about it, click here
.). After wiping my tears away, I felt a renewed sense of purpose. It is true that autism is better understood and accepted today than ever before, but this hate-filled letter demonstrates that there is a long, long way to go.
I know it's cliche, but knowledge is power. It is my sincere hope that my book will help educate children about autism and, ultimately, decrease the bullying epidemic.