On Wednesday, May 8th, Josh and I drove down to the Illinois State Capitol in Springfield.
After we arrived I texted Renee and she told me to come to Senator Sue Rezin’s office (108). Sue Rezin is my senator and also the Deputy Republican Leader. We got to her office and met with Renee (who I’ve been emailing since October 2023) and Senator Rezin’s Legislative Assistant, Tara Horn. Senator Rezin then came back from a meeting and met with us. She told us about how the committee works and what our goals were for the day.
Our bill (SB2908 aka Sami’s Law) was going to be heard before the Executive Committee. She told us that usually a bill like this would be heard by the Health and Human Services Committee, but it’s not going to be called for a vote, so getting the attention of the Executive Committee is a big deal. Senator Rezin told us that our goal is to get the conversation going and to bring attention to our cause. They are only in session until May 31st, so we will have to resubmit the bill in January and try again.
Just before 2:00 PM we headed up to room 212 where the Executive Committee was gathering. This room is where the Supreme Court use to meet. It's is large and very elaborate!
We heard six other bills before we were finally called forward. Renee and I sat at the table in front of the committee with Senator Rezin. Our Senator introduced the bill and explained who we were and why we were there. Renee then spoke about her daughter, Sami, and their experiences. While Renee was speaking Senator Rezin leaned over to me and told me that a lot of people were watching the hearing live. I wasn’t nervous, I don’t have an issue with public speaking, and her comments just made me more excited to speak.
After Renee was done, Senator Rezin introduced me. I leaned into the microphone and said “Hi” pretty loudly. I wanted to make sure the Senators were paying attention. I then read my speech. As I was describing Theo’s medical condition I pulled out a picture of Theo to show everyone. I then started crying. I cried the entire speech.
“I am here today to show my support for SB2908 aka Sami’s Law. My name is Courtney Carlson and I am the mother and full time caregiver to a sweet and special boy named Theo. *show picture*
My son was born with a rare type of brain aneurysm called Vein of Galen Malformation (VOGM). This brain aneurysm has caused my son to develop hydrocephalus and significant brain damage. He has been officially diagnosed with cerebral palsy, drug resistant epilepsy, and numerous other aliments.
Theo uses a wheelchair to get around and he can not sit or stand on his own. He sees 19 specialists and has had 11 surgeries (including multiple brain surgeries). He goes to a special multi needs school full time and attends six private therapy sessions a week (including horseback riding). Theo LOVES Disney music, going on long walks, and playing on swings.
As a family we love to travel and try new things. We’ve been to Europe, South America, and even Antarctica. We love to go to museums, community events, farmers markets, theme parks, sporting events, and Disney on Ice at the Rosemont.
We are constantly out and about due to all of Theo’s therapy and doctors appointments. But with Theo’s condition it has gotten harder over the last few years. He is 50” tall and weighs almost 60 lbs. Theo is not potty trained, so when we are away from home there is a chance that he will need a diaper change.
He no longer fits on the child size changing tables that are available in most public restrooms. We are left with few options if he needs a change. Have you ever changed your child’s diaper on the floor of a public restroom? I have. It’s extremely unsanitary and difficult. To combat this we have purchased a massage table that we have in our van at all times. But that’s not a perfect solution either. Can you imagine changing your child’s diaper in a parking lot, on a massage table, out in the open?
Being a parent of a special needs child is hard and isolating. We are finding it harder and harder to leave the safety of our home because we can’t risk Theo needing a diaper change and not having a safe and private place to change him. We want to go out, we want to travel more, we want to live our lives, we want Theo to experience everything that he can, and we want to be part of the community.
There are 20 million Americans that have limited mobility and over 8 million that need help with daily self-care. Not only would these universal changing tables benefit them and their caregivers, but these changing tables can ALSO be use by new mothers and fathers to change their infants and toddlers.
Passing Sami’s Law will change our lives. Being out in public with my son can be a challenge. But if we were able to leave the safety of our home and KNOW that wherever we were there would be a safe place to change him, that would be a huge relief! We could take him to museums, zoo’s, parks, and sporting events. We could be part of the community and do things as a family.
Getting universal changing tables throughout the state will be a large undertaking, but can benefit so many families. I want to thank you for your time and your willingness to listen to people like me who will be directly impacted by Sami’s Law.”
I tried really hard to talk slowly and to pause and look up at the Senators. Anytime I looked up at the Senators they were all starring at me. At one point one of the Senator's had her hand on her heart and was shaking her head. After I was done a few of the Senators said they had questions. They asked about the cost of adult changing tables and if we could get federal grants. A few of them also noted that they had no idea this was an issue and they were shocked to hear our stories, but they were glad that we had started this conversation. Then the chairwoman, Cristina Castro, addressed us. She said she was impressed and touched by our testimonies and she wanted to do something to move this bill forward now. She adjured the meeting and then asked Senator Rezin to come and speak with her.
We all left the room and stood out in the hallway while we waited for Senator Rezin and Chairwoman Castro to speak. When Senator Rezin came out of the chamber she was very happy! She said that Chairwoman Castro wants to add a slimmed down version of our bill to a shell bill that they will try to pass in the next few weeks! We all went back to Senator Rezin’s office to make a plan. When we walked into her office Tara was standing there and she said, “I didn’t plan on crying today!”
We all met in Senator Rezin’s office and we talked about what three places we wanted to try to get changing tables first. We decided on rest areas along the highway, government buildings, and airport terminals. She said she was going to get to work! Senator Rezin thanked us for coming and we thanked her and Renee for inviting us! It felt so good to make progress!
Josh and I left Senator Rezin’s office and went to see if we could take a tour of the Capitol Building. A kind tour guide said even though it was after 4:00 PM he would take us around. As we were heading upstairs a Senator that was in the hearing told me that I did a great job and he was very impressed.
We had a 20 minute tour of the building which was super cool!
[I needed a picture of myself in room 212]
I am so excited to come back and fight for the rights of the special needs community!
