Abilities Expo & Tornados

Monday, June 8th:

We have gotten a lot of rain around here lately! It's been great for my flowers, but the tallest things in my flower boxes right now are mushrooms! They grow so fast!

[Zoom in!]

Theo and Nurse Stephanie went to ESY while Josh and I went to work. Theo had a great day at ESY. He wore his glasses and went in the hammock!

I listened in on the HOA meeting for our condo, but I lost interest after a LONG discussion about auto locks on the trash benches. It literally went on for over 30 minutes. Some on the board want automatic locks on our trash benches because guests forget to lock them and raccoon's get in there and make a mess. Two of the board members think that they could be dangerous if a child got in there and the bench automatically locked. There was a LONG discussion about what "Due Diligence" is and at that point I had to log off. Ugh. 

Here is the trash bench that is the root of all the drama:

There is a small lock on the right side. We ask our guests to make sure the lid is closed and locked or else the raccoon's can get in, but they don't always do that. The auto locks will help, but they only work if the guests don't overflow the bench to begin with.

We'll see what happens at the next board meeting!

After school Ms. Laura came over for OT. Theo had a seizure during her session, so he got a little tired. But he still worked hard!

Tuesday, June 9th:

Theo and Nurse Stephanie headed off to school while I jumped on a call with an insurance broker. 

I learned that there is another property owner who is looking to sell their land to a data center builder. I've approached the Minooka Village Board multiple times in the past to discuss putting in additional traffic lights at dangerous intersections and putting in another grocery store, they have always responded the same way. "We want to keep the village "small town." They think that adding in traffic lights and another grocery store will keep the village small and give it that classic small town feel. Since then multiple warehouses, a tractor supply, another Starbucks, 5 Dollar Generals, a CN train depot, AND a data center have been put in. But sure, a traffic light is going to ruin the village. AND NOW there is another farmer who wants to rezone their land to sell it to a data center builder. It's completely insane.

The white dotted rectangles on the west side are where the current data center is being built. The yellow area is where the new data center would go. It's massive!

After school we took Theo to The Legacy Ranch for his ridding lessons with Sherman and Ms. Kaylin.

I can't believe I have to keep saying this, but please PLEASE do not park in the hash mark spots. We need the space for our ramp or else we can't get Theo in the van without pulling into traffic and loading him. 

Wednesday, June 10th:

Theo and Ms. Jess headed to ESY and I jumped on a Zoom with Theo's dietitian, Ms. Jeannine. Theo is down to 53 lbs and is still 51" long. We are going to increase his food slightly. He doesn't need to lose weight, he needs to plateau.

I then went to The Legacy Ranch to meet with Kate, their event coordinator. We discussed holding a launch party for the Little Lobbyists there in the fall. I want it to be a Fall Fest with a pumpkin patch, apple cider donuts, face painting, music, apple cider, fudge, pumpkin painting, pictures with the horses, and maybe even an accessible tractor ride. We have A LOT of planning to do and we need to present the idea to the Board at the Legacy Ranch, but I think it's going to go well! I sent a detailed email to the Little Lobbyists and they seem really excited about it. We need to figure out a budget and then we can get started!

I got some fun SWAG for Changing Spaces Campaign. If I'm not too busy at the Fall Festival I hope to man a Changing Spaces table.

After Theo got home from school we got a tornado warning that told us to take cover. It was literally sunny outside. So I popped my head out of the back door and looked west. The sky was BLACK and moving at us quickly. We turned on the news and they confirmed that a fast moving storm with rotation was going to hit us in four minutes. Josh had just gotten home, so he grabbed Theo and headed to the basement. I grabbed a few things and came down right after them.

The storm was LOUD and dark, but it was all over in just a few minutes. Luckily, there were only a few downed trees in the area and everything was okay. I'm not necessarily concerned with us getting directly hit by a tornado (what are the chances?! *knock on wood*), but we have a lot of large windows and the last thing I need is for the neighbors trampoline or backyard furniture to come flying through the windows.

After the storm was over we headed back upstairs. We have a ceiling lift for Theo in the living room and in his bedroom and we have a elevator in our garage. But I would love to get a stair lift so that we don't have to carry Theo into the basement. The stairs are steep and unfinished, so the last thing I want is someone falling as they carried Theo to safety. 

If you live in Illinois make sure you join my Changing Spaces Facebook group! Most of the other state chapters have groups too. Joining a group is a great way to stay up to date on everything going on in your state!

Thursday, June 11th:

We knew that some nasty storms would be heading our way this afternoon, so I wanted to get a picture of my flowers before they all blew away!

I had a call with an OT student who is doing her capstone project on changing tables and caregivers. We chatted for about 30 minutes and I am so excited for her! In the end she wants to help write up a pamphlet that we can pass out to local businesses to encourage them to install powered, height adjustable, adult size changing tables.

Theo and Nurse Stephanie went to ESY, but they were sent home early due to the storms coming in. We were in a level 4 out of 5, which means long track tornados were a possibility. 

Once the storms started firing up we turned on the news. There was a large wedge tornado that had touched down and was heading right at us. The storms were moving a lot slower than yesterday, so we had time to prepare.

[Not my picture!]

The storms chasers were following multiple tornados that were on the move! The large wedge tornado ended up being an EF3 and there was another stove pipe EF 2 along side it. As the storms got closer they started to head more east-northeast instead of northeast at us. Unfortunately both tornadoes went through Streator where one of our friends live. She said that they took shelter and a lot of houses in their neighborhood were damaged, but they were safe and had no damage to their property!

We still got hit with some intense thunderstorms, but the tornados stayed to our south. 

[Some of the damage in Streator]

The tornados weakened and passed through Coal City where two of Theo's therapists live. They were fine! Apparently the tornados took off and then reformed again close to the Indiana border. They ended up doing a lot of damage there too, but luckily no one was killed!

That night we had a beautiful sunset!

Weekend:

Our weekend during ESY starts on Friday, since they only have ESY Monday through Thursday. Nurse Stephanie came over to hang out with Theo while Josh and I worked.

On Saturday, Theo and I headed up to the Farmers Market in Wheaton. Josh was working close by so he met us there. It was super busy and there were a lot of cool things to buy.

After the Farmers Market we went to the Abilities Expo! We've gone before and it's a lot of fun to see all the cool inventions that they have for people with disabilities!

[Truck with front doors that open upwards]

[Super cool jogger that I really want, but it's sooooo expensive!]

During the rest of the weekend we watched the FIFA World Cup and the Knicks win their first NBA Championship in over 50 years!

First Week of ESY

During the month of June Theo attends Extended School Year (ESY). He goes to school from 8:00 AM to Noon, four days a week. Theo loves school and it's so good for him to be there!

Monday, June 1st:

Theo and Nurse Stephanie caught the bus to ESY and had a great day there! Apparently all of Theo's friends had appointments, so he was the only one in his class. I'm sure he got A LOT of attention!

After school Ms. Becca and Ms. Laura came over for PT and OT. He was in a very good mood and was very happy to see them!

Theo's favorite toy used to be this "giggle stick." He would shake it like crazy and crawl over to the hard wood floor and hit it on the floor really hard! He loved to make noise! But then all of a sudden he decided he didn't like to hold his toys anymore. It's much easier to press buttons. We are trying to get him interested in holding his toys again, so we use an easy-grip to help Theo hold them. Theo CAN hold his toys. He just chooses not to. 

[Theo playing with his xylophone]

Tuesday, June 2nd:

I put Theo and Nurse Stephanie on the bus and then headed off to run some errands. Since gas is so stupid expensive I try to do all of my errands on the same day. Ugh.

After school we went to The Legacy Ranch to see Sherman and Ms. Kaylin! Theo did really great!

That night I attended a Zoom meeting with my fellow Changing Spaces Campaign Chapter Leads. I told them that we had passed Sami's Law 2.0 and everyone was so excited! Our chapter lead in New York ALSO announced that they had passed a bill too! 🙌🏻 🙌🏻

I then told them that the Little Lobbyists want us to have a table at their summit this summer in Chicago. I had already started shopping on Vista Print for some fun SWAG. But then one of the leads (who happens to be really good friends with the co-founder of LL) told me that the summit was cancelled. I was pretty bummed about that. BUT then during the meeting I got an email from Mel (one of the leads at the Little Lobbyists) confirming that the summit was canceled. She said she wanted to set up a time this week to chat.

Wednesday, June 3rd:

Theo and Ms. Jess went to ESY while I got ready for a meeting with my fellow Northern Integrity owners. We had a lot to talk about!

At school they learned about the ocean!

[Theo keeping his giggle stick as far away from the xylophone as possible]

Thursday, June 4th:

I had the Zoom meeting with Mel from Little Lobbyists today. She said that even though the Summit in Chicago was canceled they still wanted to do an event in Illinois. We decided on a Fall Festival theme and she asked me to find a place for an event. I've never done a large event before, but I'm excited to tackle it!

Theo loves to go for walks, be outside, and swing. They have a swing at the school and Theo LOVES it!

[Catching some zzzz's while swinging]

Friday, June 5th:

Nurse Stephanie came over in the morning and spent the day with Theo, so Josh and I could work. Josh has been working on a HDD all week. It's kept him pretty busy!

Weekend:

I got a migraine that lasted all weekend, so that was fun. I made an appointment to get my eyes checked out this month by a Neuro-Optometrist. Maybe some vision therapy will help.

We Did It! Sami's Law Passed the Senate!

Theo was off of school this week! Nurse Stephanie came back from her trip, we were super busy at work, and I was panicking about Sami's Law. It was a very long and busy week!

Northern Integrity is going to be participating in a charity golf game this month and we are donating four items for a raffle.

I've been working hard on getting the item together and they are finally ready!

We are donating a golf bag with this awesome towel and a Northern Integrity towel.

And we are donating three golf trunk organizers filled with golf balls, tees, towels, bourbon, hats, and these hilarious golf ball shots.

[Golf ball shots]

[Northern Integrity golf towels]

[Hats with our logo on the side]

[Don't they look great?!]

We also got a bunch of SWAG to send to our employees 😁

[Safety vest with our logo]

Theo finished his Zonisamide wean, so he had to get labs done. While we were in the waiting room we saw Cory Lee on the TV! He's a wheelchair user who travels the world and documents it all on his Instagram and Blog. He's very inspirational! 

I've been watering our plants daily and I don't know what is going on with these bushes on the side of our house. They come back every year, but a couple of them are really struggling. 

What is happening here?! May I should just rip them out and put in a cute bonsai bench.

Josh went golfing and saw some cool dinosaurs and I finally beat Mario Odyssey!

I kept taking pictures of my progress and sending them to Luke and Andie. I really needed some encouragement! 

The last two weeks have been VERY stressful when it comes to trying to get Sami's Law passed. There was lot of confusion on who was going to sponsor the bill after it left the House and went to the Senate.

We almost ran out of time twice, and the day before the last day of the session a lobbyist group representing colleges and universities showed up and threatened to derail our bill at the last minute. I got a message late on Friday night from Senator Collins asking for my opinion on the new amendment. The colleges and universities don't want to put adult changing stations in the stadiums. It's similar to what the High Schools were fighting us about. Do they not know that disabled people also like to go to football games? Give me a break!

We compromised with them and moved the bill forward. I was glued to my computer all day on Sunday because I knew the bill was either going to pass or fail. We had no time to spare.

[No, I'm not worried...]

I then heard our bill called and I started recording:

It passed! If you wait until the end of the video you will hear me yelling 🤣

46 to 12 which means we have a veto proof majority!

I got a message from Senator Collins who let me know it passed and it was on it's way back to the house. It needed to be passed again in the house because of the last minute amendments that were done in the Senate. At 2:41 AM I got a message from Representative Briel that the bill passed the House again and Governor Pritzker promised to sign it. Even if he vetoed it, both the House and Senate had veto proof majorities! 

I want to thank Representative Briel and her staff for putting up with me and taking on this bill. We had to battle lobbyists together and it was a tough fight. I'd also like to thank Senator Collins for sponsoring the bill in the Senate. Even though there were some technical issues and confusion she kept up the fight and got the bill passed there too. AND of course I want to thank every one who sent in witness slips, sent in witness statements, testified in person, made phone calls, and sent messages to their Senators and Representatives! We were able to get a bipartisan bill because of all of you! Our fight it not over, but this Law will help bring dignity to so many is our community. Thank you!