I Do It For Me

Cooper trains

14249202_1443892728954516_912775185_nWell, he’s off to his first day of school. The bus driver and aide were amazing. They pulled up, opened the door, and shouted out….’is there a Cooper here that needs a ride to school?‘ Cooper of course turned and ran the other way laughing and giggling. So, in true Swenson fashion, I brought him flailing and kicking to the bus. He was in good spirits though.

I hugged him goodbye this morning and whispered in his ear….‘Be brave sweet boy. You got this.’ And he laughed and laughed and gave me a good squeeze.

I gave the aide a handful of starburst for the ride and wished her luck.

I cried as he drove away. But, not because my baby was starting kindergarten. Not because I was sad that my baby was growing. I cried because everything is different when you have a child in special education. I cried for missed first words and missed milestones. I cried because he couldn’t say…”bye mom.” I cried because of my fear for his first day. I cried because his life is so unbelievably hard. I cried for me and all the things I was missing.

This is my son’s third year of school. In our district special education students can attend 3K and 4K. We did both. This is the third year I put my nonverbal child on a bus. This is the third year I felt sadness, resentment, anger and frustration when I should have been feeling joy. I can’t help but think…it’s not supposed to be like this. This should be so exciting. Cooper should be over-the-moon about his first day. We should be talking about it. We should be celebrating. I want the world to know it takes an insanely strong parent to have a child in special education.

The Worry of Special Education

I’m super worried about his first day. He doesn’t do well with new situations or new people. He also did not have a bond with his teacher. Not in any way. That scares me. Lots of firsts for him as well. All day school, multiple classrooms, school lunch, trying to eat ‘typical’ food and drink from a straw, a bus ride home. So much change. Fingers crossed.

I can’t imagine being nonverbal in a new setting. Not being able to speak or ask for help. His only form of true communication is screaming and sometimes hitting his head or kicking. How, as a mom, do I know that the teachers are going to love him and be patient with him. I don’t. I have to trust that an autism, special ed teacher is doing this profession because they love children. And love helping them succeed. I have to pray. Because that kid can’t tell me how his day went. He can’t tell me if he was ignored. Or bullied. Or yelled at. I am at the mercy of the school.

And that my friends is damn scary.

I know he will be fine. In two weeks this will be good. He will make it.We will make it. But until then we are on a roller coaster ride. I know his sleeping will suffer. He will regress in potty training. He will lash out. His aggression will soar.

It should level out though. Two weeks. Fingers crossed.

First Day of School

I laid in bed last night and scrolled through Facebook and looked at all of the adorable kids starting school. Gosh I hate Facebook sometimes. All the smiling children. Huge smiles or tears or whatever. New clothes. Videos of kids willingly walking to the bus. Videos of kids talking about their new shoes or new backpack. Proud parents. Sad parents. So much excitement.

Cooper doesn’t care. I’m not entirely sure he even understands.

Last night, I told myself I wasn’t going to make a big deal over his first day. I wasn’t going to make a first day of kindergarten sign. And I for sure wasn’t going to put it on Facebook. I wasn’t going to make a big deal about it. Because, I was just doing it for myself. He wouldn’t care. And I knew it would be a fight. Getting the pictures would be impossible. I’d get stressed. He’d get stressed.

I kept thinking, ‘why do normal things for my autistic kid?‘ No one cares. He doesn’t care.

I woke up this morning and I felt terrible.

I felt like a terrible mother.

And I made the sign. And I took the dang pictures. And they turned out perfect. 66 tries and a package of Starburst can get you anything in this home. 🙂

He’s adorable. God he’s cute.

So why? Why do it?

I do it for me. I take these pictures for me. I throw the birthday parties for me. I pretend for me. I selfishly pretend that he is going to be OK….even just for a few pictures. I pretend that one day he will ask to see what he wore on his first day of school. I pretend that one day he will care.

My baby started kindergarten today. We did it. No need to pretend about that. And maybe it’s not a big deal to him. And maybe he doesn’t even know. But, I know. And maybe there is a cloud of sadness over all of it when there should be joy. And that’s okay too. Because, just like he doesn’t know he is starting kindergarten, he also knows no sadness. That parts on me.

I am the mom of a kindergartner. My baby is growing up.  And that is why I made the damn sign.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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9 Comments

  1. mewhoami on September 8, 2016 at 5:00 pm

    Great pictures! So glad you talked yourself into taking them.



  2. Bridget on September 8, 2016 at 6:04 pm

    You are a beautiful soul. God Bless You



  3. Jenn Soehnlin on September 14, 2016 at 11:40 pm

    These pictures are adorable!! Keep doing things like this for you, and you’ll see it impacts others too. 🙂

    Hope Cooper is adjusting well to school.



  4. Nikki Wallace on August 22, 2017 at 1:41 pm

    Hit the nail right on the head mama ❤. You keep taking pictures and having birthday parties, we as special needs parents need that. And that’s ok. I do it to.



  5. Urszula on August 22, 2017 at 2:33 pm

    I love listening u talk about you son. My sun is high functioning ASD 6 yo with behavioral problems. I also have all those emotions going thru my mind. Your blog (I just discovered few days ago) heps me. Thank u



  6. Stephanie Fidelak on August 22, 2017 at 4:29 pm

    Oh I love your realness. Like love it!! So much of what you say resonates with me even though my daughter has different needs than Cooper. Thank you!



  7. Linda Clark on August 22, 2017 at 6:18 pm

    I ran across one of your post some months ago. Watched your beautiful smile and a few tears as you shared your story on a video. I am the mom of 5 beautiful grown daughters who are now mothers and the grandmother of 16 beautiful grandchildren! I think it was your authenticity that drew me to follow you on Facebook. I also have one autistic grandson, Gamble. Maybe that too, was a part of what drew me to keep reading.



  8. Linda Clark on August 22, 2017 at 6:27 pm

    There are no perfect parents. But a loving parent is what all children need. You and your husband are loving and caring parents. Your kindergarten picture is adorable! I would always take pics, all you can. they are a part of your life story. It is a beautiful, unique, raw story of love. Love is ups, downs and everything in-between. Remember to pause and just be , when you can, even if only for a few minutes at a time. Thank you for sharing your life with us.



  9. Marie Baigrie on August 23, 2017 at 8:19 am

    Love reading your posts sadly im not on facebook where you do most of your posts. I swear sometimes i feel my days are never gonna end i have match sticks holding my eyes open and poop we make it on the toilet then its like he regresses and starts holdin it in back ti the start all over again but your posts show me im not alone in my feelings xx