autism

The Short Bus.

Some confessions. As a teenager, we used to make “he rides the shortbus” jokes. When Carter was just one he’d put bowls on his head and run SMACK into the wall. I called him “shortbus” for a time. I thought I was hilarious.

Wrong. So wrong.

Yesterday as I sat in traffic I noticed a mother pushing her small, small child out to a special needs (short) bus. The child didn’t want to go, that was clear. The mom got him on the bus, I watched as she struggled to get him buckled and then quickly left. She hugged her arms across her chest, shoulders slumped, and watched as the bus pulled away. I wanted to leave my car where it sat and run to her. Throw my arms around her and cry and cry and cry. I’m not much of a hugger or a cryer, but this scene took me back to one of the very hardest parts of my life.

That same scene played out in my culdesac when Casey was three. I’d carry him kicking and screaming to the bus. Struggle to get him into his harness and locked in so he couldn’t get out. I’d calmly leave the bus. I’d stand and wave to Casey as he cried and pounded on the window. I’d hold my arms around myself as if they were the only thing that was keeping me from falling to pieces.  The first time was the very hardest. I wanted to just drive him to and from school everyday, but I knew that then the fit would be at the school. The scene would be at the school. I wasn’t saving anything by not putting him on the bus. This way, he could be on his way to getting over leaving the house, leaving me, by the time he got to school. I put him on the bus and held it together long enough to watch the bus drive away. I ran into my husband’s arms and didn’t so much cry as WAIL. It made things so real. So solid. So permanent. He walked me in and held me on the couch until I had calmed down to the point where I was only ugly crying a little. Too worn out to put more energy into expressing the pain that had a firm grip on my insides.

The image of Casey crying and pounding on the window is one that will haunt my dreams for the rest of my life. My non-verbal three year old was communicating to me. “Get me out of here!” and I couldn’t. I couldn’t just grab him and stop him from being so sad.

It went on for months. After the first day, I was, for the most part, on my own. Lance had to be at work. I did everything I could think of. Everything that the therapists and teachers said to that would help. We made “social stories,” I got him a toy school bus (they don’t come in short versions), we would prepare all morning. But each day the scene would be the same. Get him on the bus. Tie him down. Say goodbye and watch the bus drive away while just barely holding it together. After the first week of sufficiently scaring the hell out of my other two children, I’d only let myself cry between the time the bus drove off and the front door. I had to pull it together. I had to be tough for the two little boys in the house (who really didn’t give a damn, to be quite honest. They were too little to understand. But I was still stuck in thinking I had to fit into some mfing SN parent mold).

About three months into it was the first time he got on the bus without crying.  It took bubbles and the world’s best bus driver. Every morning we would go out and blow bubbles until the bus came. Then the bus driver would throw open the doors and clap and yell, “YAY! Casey’s here!”

There are no small jobs when it comes to working with Special Needs kids.

Yesterday the CDC released its latest findings on the prevalence of autism.  When we did the walk for Casey, the prevalence was reported at 1 in 150. Even that number made me sick.  It meant that 1 in 150 kids were struggling like Casey. It meant that those mothers had to deal with the pain that I had gone through. It means those kids getting on short buses while their parents struggle to hold it together. While they struggle to hold EVERYTHING together. To fit into some mold that no parent can manage.

And now the number is 1 in 88. Do you get that? 1 child in every 88 will be diagnosed with autism. 1 boy in every 53 (!) will be diagnosed.  These aren’t just numbers. These are kids like Casey.  My Casey. And these numbers represent mothers like me. 

I didn’t tell anyone how hard everything was then. My mother would call and ask and I’d tell her that “Casey is doing SO well!” I thought that’s what I had to do. I would act like I was super tough. No one saw those tears. In fact, this is the first real time I’ve ever written this out or even spoken about it in length. But it’s WRONG. We need to talk. We need to say that it sucks and that we are sad. We need to be able to grieve, and grief is not too strong a word. Because it’s hard. It still is hard.

Last night I tried to write out Casey’s diagnosis story. I got about an hour into it and couldn’t take it anymore. I went upstairs and laid next to him in his bed. He wrapped both of his arms around me and hugged me tight. I cried for a long time.  He was unaware. He was telling me all about the butterflies he wanted me to order and the plants that I needed to order along with them. All the while he was hugging me tight. Like his insides knew that I needed that, whether he was aware of it consciously or not.  I wasn’t just crying for me. I was crying for the moms who have or are in the process of getting their child diagnosed right now. The moms who will have to put what Could Have Been aside for their child and face What Is. That’s the hardest part.

And What Is is tough. It’s sad. It’s exhausting. But it’s good, it’s so good, too. Those times where you feel as though your soul cannot take any more pain will make the times that are good SO MUCH better. I promise you that.

After Abby turns three there will be two special needs buses stopping at my house in the morning. Two. Casey and Abby are too far apart in age to ever be able to ride the same bus. I’m not sure how I feel about that yet.

But after all of this, I do know that I don’t think it’s funny.

24 thoughts on “The Short Bus.

  1. I so get this Lexi – and you are totally right about it not being better at school. We went through this with D . . . in the school every. single. day. until we figured out another alternative. I read those stats yesterday too and wanted to puke. You are so right with your statements about it being exhausting but good. SO good! Kim TheSimpsonSix.blogspot.com

  2. thanks for sharing your heartin this postwe have encounteredso many friends along the road of lifewho have special needs childrenthat it has become more commonplaceour church even has two doctorsand parents of a special needs childwho created and staffa special class on Sundaysthanks so muchfor sharing at Fridays Unfolded.alison

  3. Good luck finishing your diagnosis story…it is hard but it is good for you and it might help someone else going through it. A friend of mine is concerned her foster child is autistic. Right now he has only been diagnosed with sensory disorder right now and blogs are helping her through everything. So…thank you for sharing your life with others!

  4. I had that same situation play out every day at the school doors. All the students and parents just taking it all in. Thing is, I never saw them. I too have done that walk.

  5. Crying. Oh the tears are streaming long and fast. Crying for the hurt I have caused by the ignorant, young, immature me, who made those 'short bus jokes'. Crying for my sister as she struggles to put my niece on the SN bus everyday. Crying for my neighbour who has now overcome those moments of fear and struggle and who happily rides the SN bus with driver Bev. Crying for the parents who just received a diagnosis and are yet to know what lies ahead. Crying for the many hearts that hurt. But while crying, I'm smiling, because even though there is pain and hurt, there eventually is happiness. There will be children, children like Casey, Noah, and Grace that will ride the bus with smiles. That will find excitement when they see it turn the street, and with prayers and love, they will peak through the window, wave and smile 🙂 Thank you for sharing your heart.

  6. As a young special education teacher, I daily take these precious three year olds with special needs off their tiny bus and treasure the adventures we share together…just across the city from where your own stories take place. I have recently stumbled upon your blog and crave updates as your posts are WONDERFUL. There is no doubt that you are touching countless lives with your stories. Thank you…You go, girl!!!

  7. This was a great post, sis. I know you didn't talk about it, but we knew. We could feel your pain but, none of us had experienced it, and I don't think any of us knew what to say or how to help. All we could offer was love and prayers. I remember you calling me sobbing after the "f word" incident at McDonalds. I didn't even know what to say, so I just cried with you. And, then tried to make you laugh. I can't imagine the heartbreak you felt watching Caso as that bus drove away. You should think about writing a post for family members about how to support parents who have kids with special needs. With the increasing numbers there is also an increase of extended family being touched by Autism, who desperately want to help, but don't know what to do. I love you, black heart and all. And, I love bubbles, butterflies, incredible shortbus drivers, and Casey.

  8. Sorry, had to correct a grammer thing…Just wanted to say that:You write so beautifully. You make me care SO MUCH! My youngest didn't develop speech so we began diagnosis and therapy. It was a speech delay, and I now know it was an incredible blessing for our family. A whole world opened up. I learned that there is nothing to fear in having special needs — not like society had unconsciously taught me to fear. I met the most AMAZING people in the waiting room during therapy. People I absolutely admire. People like you. I wish everyone could know someone like you. Your beautiful blog makes that possible. Thank you for how you write and advocate and love. You make me want to be my best.

  9. Thank you for saying that. You really have no idea how much it means to me that anything I write has any impact. Really. You made my day.

  10. Your post is beautiful, but haunting. Yes, I totally agree–the numbers are super scary. So, so scary. And they aren't just numbers. They are kids, like yours and mine. Sigh.

  11. what a heart felt post! One very dear friend of mine has an autistic child…..she fights so hard for him to get his needs met! He gave her strength she never knew she had…I am your newest follower from the hop…pls follow back if you can.I hope you and your family have a great week!

  12. I just wanted to say thank you for putting into words what I couldn’t. Every morning, I dress my 2 special needs boys, feed them, and place them into the caring arm’s of their bus driver and aide.
    My oldest is 9 and has autism. He cried every day for 3 years straight. Wails that will forever be etched in my soul. Often times, I would cry, too! But fast forward 6 years and the same little boy is now walking his 3 year old little brother onto the bus they share. He holds his hand, carries his bookbag, and sits with him every morning. It’s amazing to watch this simple act of brotherly love unfold.

  13. What I love about all of the posts that I have read so far is that I can hear both the deepness of the grief and struggle, and the joy the that transcends all of the circumstances. You have been given a gift for telling your story. Thank you for sharing. From Another Special Needs Mom.

  14. The post is incredibly great and the expression is phenomenal. Here, “Autism” and “special needs kids” is magnificently worked out and shows the grievances in a clear cut terminology. Since, Autism is a genetic disease; it involves a lot parental conditions and other similar attributes in the genetic pool of the family concerned.

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