Birthday Girl!

 Today our sweet girl is 5! Much like the year she was born, we are facing cold winter weather and storms! The weekend she was born in 2019, we got around 12 inches of snow. Most of Susie's birthdays have been delayed or canceled due to snowstorms or illnesses! Luckily, we were able to celebrate a few days early at the Trampoline Park! Susie had a really great time jumping and playing and really enjoyed her cake! Susie gravitates towards red things, so we made her birthday cake red! 

Susie hates fire so we put a candle on the cake but didn't light it!

Notice the pigtails, that's a big step! 

Before her party, we got to put 5 Pennie's in the bank at church! This is a sweet tradition that we enjoy at our church. Thankfully she got to participate, as this weekend church is already canceled due to impending weather. Susie is not much for gifts, and with Christmas just ending, she didn't need much! She was showered with lots of snacks and Pepsi! My sister also made her an amazing fidget blanket that has built in pop-it's.

My mom also got her a fidget chair that spins and she loves it, but I was having trouble getting a good photo of her on it! 

Enjoy some pictures of Susie's past birthdays. 

Ready for Susie Claire to be born! 

January 11, 2019 7:58 am, 7 lbs 3 oz

1st birthday, snowed in at home! 

Susie is 2! 

Silly girl eating some corn on her 3rd birthday! 

Susie did not feel the best on her 4th birthday. This was in the middle of us having many sleepless nights and ear infections before she had her tonsils out! She did get to go swimming a few days before her birthday to celebrate! 

We are so blessed with Susie and impressed daily with her progress. She definitely keeps us on our toes and there is never a dull moment with Susie. We hope year 5 is her best yet! 

Christmas and December update!

Hello everyone! We hope you had a wonderful Christmas season! We sure did! I wanted to write about Susie's Christmas and some things we did to ensure she had a successful Christmas! But first, I want to share a few big things Susie has done this month.

Susie does not do well in environments where she is expected to 1. Sit still or 2. Be quiet. A few weeks ago we tested her at 2 different events in which she had to sit still, and be quiet. The first occasion was at Sally's gymnastics recital. It was a 3 hour long event and Susie had to go. We were nervous as it was going to be a long time for Susie. However she far exceeded our expectations and made it the entire show, only leaving for about 20 minutes to go to the lobby. That same weekend, we took her to a church Christmas program. Susie loves music, so she did well with listening to the kids sing! She was rewarded with a cookie, or 5! 

   Trying her best to be quiet at the church Christmas Program! 

Susie also didn't do the best with Santa the first 2 times we saw him. I got to thinking that maybe she was overwhelmed by the crowd and the lines. The County Library had pictures with Santa, I went hoping it would be a smaller crowd and we could go at Susies pace. It was just that and Susie did amazing and we got a wonderful picture of her and Santa! 

                  

At Thanksgiving, we did a buffet style table. Susie had a really rough day because she doesn't like to share food and tried to take over the whole table. At Christmas, we decided to have a table dedicated to Susie. We laid out a cheese ball (her favorite) chips, pretzels, and croissants to name a few things! Susie did so well with her own little grazing table and was so happy! 

It is hard to buy gifts for Susie, she doesn't care for many things. However when she likes something, she really likes it. We put a lot of thought into her gifts this year and decided to get her some sensory items that she is familiar with using at school. I did a lot of research and found a sensory swing that would fit in our hallway and Nana bought it for her. Santa also brought her a sequin board and a small trampoline. This was the first time that Susie actually showed interest in her gifts! We aren't able to get many pictures or videos of her, as she has kind of sworn off clothes this Christmas break! However I do have a small clip of her in action on the swing which keeps her entertained for hours! 

          

Christmas Program at School

 Last week, Susie had a Christmas program at school! If you haven't figured out by now, Susie doesn't love organized events and standing still is not her thing. I wasn't surprised when her teacher text me a few days before the program to say Susie was running away during practice and they weren't sure if she would participate the night of the program. After some discussion we decided we would go, and just see what happened. 

We got to the school a few minutes before the program started and changed Susie in the car. She wasn't happy to be at school, at night so I wasn't having high hopes for her participation. When we got inside, they met us at the door with her belt. The teachers told us to put it under her dress and to not take her in until the program was ready to start. They had seats saved for us in the front row and a seat for one of us to go up front with her. It was off to a great start, and they had thought of everything to help her succeed. Minutes before show time, she discovered the cookie table. I tried my best to deter her, and the teachers told me to let her have one, and she could take it with her. 

When the other children came out, Susie went up with her dad. She stayed up there the whole time. She smiled and didn't cry or run away. When it came time to say her name, Ty announced it to the crowd. It was so exciting to see her up on stage enjoying herself. The other kids were happy to see Susie and a few of them told me she was their best friend! 

When the program was over, I couldn't help but cry happy tears. I not only was excited to see Susie participate and stay on stage, but I was taken aback by how well her teachers know her. They worked above and beyond to ensure she had a successful program. We are very thankful for all they do and they helped Susie have a special night with her classmates! 

Selfie why we waited!

We are getting the hang of this bow thing!

Sleep

My post have usually been about the progress Susie has made academically, socially, and behaviorally. However, there is one area of Susie's life that has improved drastically in the last year and that is sleep!               

 One thing to know about the Williams' kids is that they don't require a lot of sleep (some say they get it from their mom). Susie has never been a great sleeper. She had a very erratic sleep schedule taking random naps through the day, falling asleep at 6:00 pm just to wake up at midnight. She would stay up until 2-3:00 am and then be up for the day by 6:00 am. It was a crazy schedule, and quite exhausting for all of us.

Things didn't improve when Susie started school like I had hoped they would. She even had to miss a few days of school because by 7:00 am (the time she was leaving) she was falling back asleep from a night of partying. When we decided Susie needed her tonsils out I heard that it might help her sleep! She had her surgery on March 16, 2023 and slowly her sleep started to improve, as did mom and dads! 

Now, although it still happens on occasion, it is rare for Susie to have a sleepless night. Susie usually puts her self to sleep, without a fight. The interesting part is, you never know where or how you might find her! Just this week we couldn't find her and she had climbed in her brother's bed and fell asleep! Susie is a much happier gal when she sleeps, and that helps lead to her progress at school! 

Enjoy some photos of Susie sleeping!!

 

School Update!

 One of the hardest parts of Susie being non verbal, is her inability to tell us about her day. What does she do at school? What was her snack? How was her car ride? These are all things she can't tell us so we rely on her wonderful teachers and van driver to give us an update! Susie has been extremely blessed with the best teachers, and the van driver, Ms. Annie is a godsend. 

Last week, we had the pleasure of meeting with Susie's special education teacher, speech pathologist, the director of her school and her occupational therapist for her IEP/parent teacher conference. Since Susie doesn't go to school in our hometown, I rarely get to connect with these ladies. It was nice to get to talk with them in person and discuss Susie's developmental milestones and achievements. These meetings can sometimes be discouraging to hear all the things Susie can't do. However Susie's speech therapist said it best "she might not be where we wanted her to be with talking, but great things are happening." 

Susie has come a very long way in a year, and does so many great things at school. Susie is starting to explore new toys, interact with her peers, and follow a classroom routine. We are so proud of the progress she is making and forever grateful for the great team of teachers at UCP. 

Enjoy these pictures that were sent to us from her teacher! 

Feeding the baby!

Swinging and playing basketball!

Making a craft with some glue!

Arts and crafts time. 

Puzzles! 

Reading a book!

Ball pit!

Sensory table!

Painting craft!

Angels

 I saw this picture this week, and it really resonated with me. I don't always see Susie as a child with special needs, because the majority of the time she does things that a typically developing 4 year old does. Susie is so incredibly special to our family and her quirks are what we love best about her. However, sometimes it's hard to explain to people that Susie does things differently.

Susie is LOUD. When she's mad, she's loud. When she's happy, she's loud. When she is tired, she is loud. When she's excited, she is loud. You get the point, Susie is heard where ever we go!

Susie is MESSY. Susie leaves a mess wherever she goes. She leaves a trail of food at church. Every time she eats pizza, we have to clean the carpet! Chocolate ends up all over her face as she enjoys every bite! 

I have mentioned that taking Susie new places can be difficult. Most of the time people are very kind and generous if they see us struggling. However, we have had a few encounters lately where people don't understand. 

A few months ago we were eating dinner at a Hibachi grill. Susie HATES fire and we didn't think about that before going in. When the fire got big, Susie was inconsolable. She was climbing up my back and getting very upset. We got her iPad and she started to calm down. Later, we found out that a patron from across the restaurant had asked the waitress to make us turn it off. Fortunately, the waitress told them no. It made me very sad to think that these people made a rude comment, without knowing the whole situation. 

I also had an encounter with a young girl that kept talking about how loud Susie was. She continued to talk about her "fits" and that she was "yelling" all the time. I explained to the girl that Susie was having fun. She then said "it must get old listening to her be so loud." I then told her that Susie couldn't talk, so being "loud" was her way of communicating. 

This brings me back to the quote at the beginning, "sometimes angels are disguised as kids with special needs to teach us how to be better people."

Outings with Susie

                      Playing with her iPad while we wait! 

                                Watching the penguins!

                                       Pretzel time! 

                                    Good and relaxed!

                                    Playground time!

                                   Tickles from dad!

                                      Time for pizza!

                         Watching the fish at the aquarium. 

   I am going to be raw and honest for a second, taking Susie places is not always easy. If she is unfamiliar with where she is going or is asked to sit in a stroller/wagon it makes for a very long day. Often times it's a guessing game of what she needs to help her settle down. Ty and I usually take turns lugging her around and it's hard on our backs as she gets older. Often times we dread to take her places for fear she will be upset with a new environment.

  Susie gets scared of grocery carts and does not like events that are outside. She gets nervous around automatic hand dryers and doesn't like places with lots of people. She most definitely doesn't like fire or loud noises. However loud places like Chuck E Cheese or a trampoline park don't bother her. We have been on a quest to make outings easier on her, and us. 

  At school Susie wears a compression belt most of the day. At first, I wasn't sure why she would need it. When we went to loud places that were over stimulating she seemed to be fine. However the teachers explained that she often asked for it by handing it to them. After several outings where she wanted to be held we decided to order the same one she uses at school. It is called a bear hug. I have to admit, I was skeptical but we decided to give it a try. 

   A few weeks ago, I did something I rarely ever do, and took all three kids grocery shopping. Knowing Susie hates the cart, we knew we would have to work quickly. I brought her belt and put it on her before sticking her in a cart. We got about half way through the store before I realized Susie was doing good. I decided not to mention it and we kept shopping. Susie did wonderful, never cried, got upset, or wanted out of the cart. My mom and I were amazed. I thought there was no way the belt helped THAT much. 

   So, we decided to really test it out by going to the Kansas City zoo this past weekend. We packed her favorite snacks, juices, and a pillow for her to sit on in her wagon. We put her belt on right when we got there. Fast forward 6 hours later, and Susie rode almost the entire time. She did not cry, she did not fuss. She ate her snacks and drank her juice reclined in her wagon. She actually paid attention to animals, and overall she was a perfect girl! I'm still not sure the science behind it, or if the belt will work forever but it sure has made a difference in the few outings we have used it!