Theo is a 4th Grader!

Monday, August 17th:

We get a lot of door to door sales guys around here. They are either selling solar panels, bug/pest control services, lawn care services, internet, or cell phone services. I always answer the door and talk to them. I have no problem saying no and I'm always nice. AND a few times I've actually switch services because of them, so I may as well hear them out. During the summer two kids came to my door. They had a small business and they were cleaning out trashcans with their new power washer. I thought it was a great idea, so I had them do our trash cans after garbage was picked up that week. 

A couple of weeks ago they reached out again and asked if we needed our exterior windows washed and our driveway cleaned. I said to come by and give me a quote and we'll chat. On Monday they came over and counted our windows and looked at our driveway. They gave me a quote and I accepted. After a couple of hours they rang the doorbell and I went out to inspect their work. The kids are very polite and they did a great job. I paid them and gave them a nice tip too. I hope they are successful entrepreneurs! 

They gave me permission to post about them on social media, so here's their Instagram:

Tuesday, August 18th:

For Theo's last day of summer we hung out at home and then went for a jog/walk around the neighborhood. We found a new park in another neighborhood that had an ADA swing and Theo was very happy about that! 

We have had a ton of rain this year and our backyard trees have grown a lot!

That afternoon we took Theo to The Legacy Ranch for horseback riding lessons with Ms. Kaylin. Unfortunately, Ms. Kaylin is going to be leaving TLR at the end of this session and we are really sad about that. But they said that Sherman should be coming back soon, so we are excited about that!

Wednesday, August 19th:

Today is Theo's first day of 4th grade! 

We have a new bus driver named Lisa and the bus aid from last year, Christy, is returning again this year. Theo seemed pretty happy to be going on the bus with Nurse Jess and Nurse Patti.

Thursday, August 20th:

After Nurse Patti and Theo headed off to school on the bus I went north to meet with Megan, a representative from Sova. She was in town to meet with an architecture group (great idea!), so she reached out to see if we could have breakfast. It was so nice to chat with her about Sova's changing tables and all the work we have to do in Illinois. I love that this company has worked closely with Changing Spaces Campaign for the last few years. We've sent them a lot of feedback and they made a great changing table that we endorse. It's powered, height adjustable, adult sized AND it does not require any infrastructure work.

Here is their Ascent® Universal Adult Changing Table:

[Food play and using his eye gaze]

Friday, August 21st:

Theo and Nurse Patti had a great third day of school! Since Theo needs to be home by 2:30 PM for PT and OT, I will be picking him up from school on Mondays and Fridays. It'll be nice to see his teacher, therapists, and admins a couple times a week, so I can keep up to date with what's going on at school.

I had to take down Theo's artwork to make room for all his new creations!

Weekend:

Josh worked on Saturday and then went golfing Sunday afternoon. Hopefully we have a nice and mild Fall so he can get a few more golf days in before the weather turns.

PSA's:

School is back in session! Do you know who fought the hardest against Sami's Law? Lobbyists who represent School Districts. Surprised? I was! I think it comes down to a lack of awareness (call me naive). We need to make sure that teachers, therapists, and administrators know about our loved ones' needs at school AND on field trips. Send this to your child's teachers to remind them to think ahead about field trips and check whether the location has a universal changing table! And if there is a place that your kiddos frequent on field trips that does not have a changing table, please let me know and I will reach out to them!

Changing Spaces Campaign

Our Map

Post from Jan Mariet Thomas:

"This is one of the most frustrating cycles surrounding accessibility.

Disabled people cannot participate because a place, event, activity, or program isn't accessible. Because they cannot participate, nobody sees disabled people there. Because nobody sees them there, people assume disabled people aren't interested in participating. Then, because they assume there is no reason to have accessibility and continues to be treated as unnecessary. And around we go.

The absence of disabled people does not necessarily mean they didn't want to come. Sometimes it means nobody made it possible for them to be there in the first place."

I was literally just talking to Megan at Sova about this! 

I get so frustrated when I approach businesses about putting in height adjustable, adult sized changing tables and they tell me that they've never had any customers ask for one, so they don't think they are needed.

Parks Town Hall

Monday, August 10th:

This was Theo's last full week home before he goes back to school! And of course, it rained ALL week, so we were stuck in the house a lot.

Due to the Open Space Lands Acquisition and Development Grant (OSLAD) many City Councils and Parks Departments around the state are renovating and upgrading their public parks. They are making the parks more accessible by adding in ADA swings, merry-go-rounds, carousels, ramps, musical instruments, teeter totters, and more!

I’ve been reaching out to various Parks Departments over the last year and asked them to please include accessible bathrooms that have height adjustable, adult sized changing tables when (and if) they do renovations. A lot of the Parks Departments did respond to me, but none of them would commit to putting in height adjustable, adult sized changing tables.

I went to two Town Hall meetings in Minooka this last year where two local parks were discussed. The first one that is going to be renovated is the Lion’s Park. I am so excited about this because it’s literally down the street from our house. I talked to the Minooka Village Board members and they seemed interested, but hesitant about the changing table idea. 

On Monday I went to another Town Hall meeting with my friend Shannon and her daughter who are also disability advocates. They showed us plans for a brand new park in Minooka. I again talked to the Minooka Village Board members about including accessible bathrooms that have height adjustable, adult size changing tables. They said that they are concerned about vandalism, so they probably aren’t going to put a table in.

It sucks. It really does. We have multiple parks close to use that have accessible equipment that Theo can use, but we can’t go because there’s no bathroom for Theo to use. I only know of two parks in the entire state that have height adjustable, adult size changing tables: Hope Helps All Inclusive Playground in Coal City and the Tricentennial Playground in Peoria.

I’m going to continue to fight for parks to be truly accessible! Please let me know if you know of any parks that have height adjustable, adult changing tables or if there is a park being renovated by you and I'll reach out to them!

[Theo on a swing at a park in Joliet]

I wish we had more parks like the Tricentennial Playground in Peoria. It has accessible equipment, a fence, AND a height adjustable adult sized changing table.

As we were leaving the Town Hall, we saw the Fire Chief in the parking lot. It was perfect timing because we were just talking about Project Fire Buddies and how Minooka is the only town in the area without Project Fire Buddies! 

The Fire Chief was very excited about the program and we exchanged information. Hopefully we can schedule a time to meet with him soon and talk about the next steps!

Tuesday, August 11th:

Theo, Josh, and I went to Ottawa for Theo's yearly check up with his Pediatrician. While we were there the tornado sirens went off and Josh was worried about a giant tree falling on the van, but we were all fine! We caught up with Dr Davé and our favorite APN Pahroul. They signed Theo's paperwork for school and we made an appointment to see them in one year, unless Theo gets sick this winter *knock on wood*

That afternoon I had a company meeting with my fellow owners and a lawyer who is going to update our Operating Agreement. The meeting went well and I am excited to get the agreement updated and out of the way.

That afternoon we took Theo to The Legacy Ranch for lessons with Ms. Kaylin and Ajax. Sherman is still healing, but he is getting better!

Wednesday, August 12th:

Today Theo and I headed to Hanger Clinic to pick up Theo's new AFOs and SMOs. They are pirate theme and fit perfectly!

Of course, on our way home we drove through an insane storm. The rain came down so quickly that we couldn't drive more than 20 mph and it took us an hour to get home, BUT we were safe!

We were not able to see the Total Solar Eclipse here, but we watched it live on TV and it was so cool! Who wants to meet me for the 2045 Total Eclipse?! Where should we meet? There are a lot of options! I'm thinking maybe we should go on an eclipse cruise. That way we can see one sooner 😎

That afternoon Theo had feeding/speech therapy with Ms. Jen. He has been doing really great with his teeth brushing lately! I am so glad that Jen told us about Toothbrushing 1-2-3.

They opened a Stan's Donuts at the local Marianos. That can be dangerous!

I think the baby doves are almost ready to head out!

Thursday, August 13th:

Did you know that we live in Tornado Alley? Yeah. It's fun.

Thursday evening we went to an Open House at Theo's school. We dropped off three boxes of supplies and met with Theo's teacher, Ms. Kate. Theo will have a 1:1 aid and Nurse Patti will go with him to school every day. We are so excited to see what this year brings!

Friday, August 14th:

This weekend is D23 and there were so many awesome announcements and panels!

[Frozen 3, Zootopia 3, Incredibles 3]

[Kindgom Hearts news!]

[Star Wars!]

Weekend:

It was a rainy weekend, but that didn't stop us from going out. We went to the Naperville Summerfest Farmers Market and to the d'Escoto company picnic. It was nice to finally meet all of the d'Escoto people in person. Josh has worked for them for almost 10 years and they have always treated us so well!

Birthday Weekend!

This week was a little chaotic!

⭐️ It was Nurse Stephanie's last week, so she trained Nurse Patti at our house on Monday and Tuesday. We are really going to miss Nurse Stephanie. Theo just loved her and he got so excited every time she came over!

⭐️ Theo's bloodwork and EKG came back good so his doctor increased his meds

⭐️ The last of our BeatBo's (aka BeBo) ran out of batteries and even after I replaced them he refused to turn on. Since he was one of Theo's BFF I will put him on the shelf and not toss him. We still love you BeBo!

⭐️ Josh got a new camera for our trip to Africa!

⭐️ Theo had lessons at The Legacy Ranch

⭐️ The Little Lobbyists are launching a chapter in Illinois! We are very excited to have them here! Join our Facebook group!

⭐️ I went to a Special Education Parent Advisory Council (SEPAC) meeting at the school. It was nice to talk to parents who are just starting the IEP journey. I have a lot of knowledge that I am more than happy to share!

⭐️ We went to the hospital for a check up with the ENT and GI. Theo's ear has been leaking for the past few weeks due to his post nasal drip. He still has a tube in his right ear. The ENT prescribed drops and said his ear should clear up in the next week.

I talked to Theo's dietitian, Jeannine, and she would really like for him to get more formula. Theo has been loosing weight over the last year and we feel like he needs more calories so his brain can continue to develop and he can continue to get stronger. The GI disagrees and thinks that kids in wheelchairs need to be in the 50th percentile. I don't think that stunting Theo's growth is the right answer. We have ceiling lifts and an elevator and a wheelchair accessible ramp. Theo doesn't need to stay small.

After we saw the ENT and GI Specialist we went to find the only changing table in the entire hospital. These FIXED HEIGHT, CHILD SIZED changing tables are such a pain.

⭐️ Speaking of changing tables, Governor Pritzker signed our bill! 

This law doesn't impact current buildings, so there is still a lot of work to do. But it's a step in the right direction! Hopefully we will see more HEIGHT ADJUSTABLE, ADULT-SIZED changing tables around the whole state soon!

⭐️ Theo tuned nine this weekend! How crazy is that?! To celebrate we went to the local Farmers Market where Josh found these really awesome snow boots. I guess he thinks he will be going back to Alaska for work this winter ☃️

Theo got me a birthday card. He's such a sweet boy!

⭐️Josh has been working and golfing a lot. I am glad that he is still enjoying both 😁

⭐️ I did a little photo shoot with Theo for his birthday! He is so handsome! Happy birthday sweet boy!