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!

12th Wedding Anniversary and New Seizures

Monday, May 18th:

It's the start of Theo's last week of third grade! He will be off of school next week and then he'll do Extended School Year (ESY) in June.

Theo and Milto went to school and had a great day! We are almost done weaning Theo off of Zonisamide (it's been a 10 week wean) and he's been only having 1-3 observable seizures a day for the last month.

After school Ms. Becca and Ms. Laura came over for PT and OT. Since the new Star Wars movie is coming out this week they thought it would be a good idea to play with Grogu (aka baby) and "lightsabers!"

Tuesday, May 19th:

Theo and Milto went to school today and at school they had Field Day! They played with some water toys and there was a bouncy house and snow cones!

We planted the rest of our flowers! I wanted to test how dahilas would do in our weather and Josh found two at Home Depot. I love dahilas, so I hope they survive! 

We also go some begonias. We usually stick with petunias since we know they do really well here. But it's fun to try something new, right?!

After school we went to see Sherman at The Legacy Ranch. Theo was stubborn and would throw his head back, and his instructor Kaylin would tell him to be strong, but then Theo would push his head back even further. After a minute of being super stubborn, he would pull his head back up and the ride would continue. 

Wednesday, May 20th:

While I was getting Theo ready I heard him have a seizure. I came over from the kitchen (where I was getting his meds ready), grabbed his VNS magnet, and paused. He looked kinda strange and my brain couldn't comprehend what I was seeing. Theo's seizures ALWAYS push him to the left. Eyes to the left, left arm raised, head turned to the left. Sometimes he has "hard" seizure where his entire body will go to the left in a c-shaped position. Those hard seizure are more common when he is first waking up or when he is tired.

This morning he had a c-shaped hard seizure, but it was to the right! It was like looking in a mirror.

I swiped him quickly and started the timer. Even though the seizure was hard he came out of it pretty quickly. It was strange to see him on his right side since he HATES being on his right side.

So Theo's seizures continue to change and surprise us. Lennox-Gastaut Syndrome sucks.

Ms. Jess went to school with Theo today for his last FULL day of third grade. At school they passed out awards and Theo got "Best Laugh!" He really does have a great laugh!

After school Ms. Jen came over for feeding/speech therapy. We used Theo's eye gaze and when I was showing Ms. Jen pictures of Theo's brain he kept saying "that's yucky!" We told him that his brain is beautiful and not yucky! He has gotten really good at using his eye gaze over this last year.

Thursday, May 21st:

Today was an early out day for Theo and Milto. And of course I was overwhelmed by two different situations. We are trying to hire new employees at Northern Integrity AND our bill to expand Sami's Law was scheduled to die in committee tomorrow at 5:00 PM.

First, Northern Integrity. We currently have four employees in two states (Illinois and Michigan) on three different jobs for two clients (follow all that?). We were told we needed another guy in Illinois for a long job and we also needed a guy in WY for a short term job. Great! We found great candidates and the client was happy with our picks. We hired them, but the guy we were supposed to hired for the WY job bailed on us. Ugh. So, we are scrambling to find a replacement. AND then we were told we need to find another guy for a job in PA! It's great, but very stressful!

Sami's Law update! We've had some confusion with the bill ever since it passed the House. State Senator Cappel originally signed on to be the sponsor, but then she dropped out. State Senator Lakesia Collins stepped in and became the sponsor of the bill. We are so happy to have her onboard! 

This week the bill was sitting in the Senate Executive Committee (the committee I testified in front of two years ago). According to the ILGA website the bill was assigned a Rule 2-10 Committee Deadline of 5/22. That means if the bill was not voted out of the committee by 5/22 the bill would be dead and we would have to start completely over again next year and all of our hard work (phone calls, emails, getting yelled at by lobbyist, passing out flyers, talking to members of the community, etc) will go down the drain. We fought too hard for this bill for this to happen. 

So, I was panicking. My friend Deepa was panicking. Representative Briel and her staff members were panicking. We could not get a hold of Senator Collins and we had tried EVERYTHING! We may have crossed a line and called in a few favors, but we were in the dark and spiraling! 😭😭

We finally heard from Senator Collins Thursday afternoon. She said that we filed an extension and the bill would be heard next week in the Executive Committee and will be voted on by the entire Senate by the end of next week. Phew! 

The bill will hopefully move out of committee soon, but we need to start telling our State Senators NOW that we need them to support the bill. Please go to the link below, click on "Illinois Senate," type in your address, and find your State Senator. Please CALL them at both their Springfield and local numbers. Ask them to please support HB4379 (Sami's Law / Adult Changing Tables).

https://www.illinoispolicy.org/maps/

If your State Senator is on the Senate Executive Committee (like mine is!) please please PLEASE call them! Here is a list of who is on the committee.

https://ilga.gov/senate/committees/members/3072

This bill passed the House with bipartisan support, community support, and even the support of the lobbyists groups that we negotiated with. Our Disabled community deserves accessibility​ and dignity!

Stay tuned for updates!

Josh is still working hard every day and he still loves his job.

After school Ms. Jess came over to watch Theo so Josh and I could go see The Mandalorian and Grogu! 

The movie theatre had all these cool popcorn and drink containers, but they were crazy expensive, so we did't get any. Just a regular $14 popcorn for us please and thank you!

The movie was fantastic! It was so much fun! Even if you have never seen a Star Wars movie you will enjoy it. It's just action packed and unbelievably adorable!

Friday, May 22nd:

Since Theo didn't have school today Ms. Becca came over in the morning for PT. After therapy Theo and I watched The Late Show with Stephen Colbert for the last time! 😭😭

I've been watching Colbert since he was on the Daily Show. I then followed him over to The Colbert Report and I was very excited when he got the Late Show gig. Even though I have been to NYC many times I never got to see his show live. We tried to go late last year after they announced that the show was canceled, but it didn't work out. 

I am going to miss seeing him every day! He brought a lot of laughs and he's definitely the reason why I enjoy political satire so much. I'm sure we haven't seen the last of him though!

Late on Friday the ILGA website finally updated and we could see that an extension was filed for Sami's Law. What a relief!

Weekend:

Milto came over for a long day with Theo on Saturday. I'm so glad he was here so I could work on Northern Integrity and Sami's Law stuff. Josh was able to get in a golf game with some guys from work.

That night we went to Ruth's Chris to celebrate our 12th Wedding Anniversary!

Dinner was great and it was fun to just hang out with Josh for a few hours!