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!

 

Busy.

A lot of life has happened in the last few weeks, and I have neglected to write any posts about Susie. School started back up, I started my 11th year of teaching, Sam started 6th grade, and Sally started 4th. Susie started her second year at UCP and made the switch to afternoons with new teachers. Life has been very busy and hectic. 

Susie is doing well at school and within the next week or so, she should have her AAC device (an iPad that helps her talk). Susie's preschool wrote a grant for the app, and we purchased the iPad that we will use to run the app. We had a bit of a setback when the iPad broke, and we had to get a replacement. Susie's speech pathologist is working to get it set up so that we can begin to use the device in everyday life. 

Susie continues to grow and do new things daily. Susie is starting to show a preference for things by pushing the undesired item away from her. She helped pick out an outfit for the first football game of the season by pushing away the shirt she didn't want. She continues to do puzzles and is getting quite good at them. She is constantly getting positive reports from school, and she is interacting more and more each day. She is also exploring her classroom more and trying new activities. 

Susie sometimes has a hard time in public places, and we aren't quite sure what causes her to be unsettled. We think that maybe large groups of people scare her, and she often wants to be held by Ty and I while around crowds. We are trying to figure out ways to help her, but we have yet to figure out what triggers her to be upset. 

Although I have been quiet on this platform for a few weeks, that doesn't mean Susie has been quiet. That girl keeps us on our toes and is a constant source of entertainment. Her language delay sometime makes it difficult to know exactly what she needs or wants, but Susie knows how to get her point across. It is so fun to watch her turn into a happy fun-loving big girl. Stay tuned for more stories because this girl literally never slows down. 

Thank you for being here, and for praying for us. We love all of you. 

Siblings

 I have mostly kept this blog space about our youngest child, Susie. However, she has 2 older siblings a brother Sam who is 12 and a sister Sally who is 10. There is a 5.5 year difference between Sally and Susie, and 7.5 between Sam and Susie. They have always been so good her and have helped since the day she came home. 

For a long time, Sam and Sally were not aware that Susie was behind in her communication skills. They have always found her quirky actions funny and are her biggest fans. 

Once Susie started school, we had to explain to them why she couldn't go to the preschool in Hamilton. They began to notice that Susie was behind her peers and they started to ask questions. They have witnessed me have moments of sadness and they too pray for the day she can call them by name. They so badly want her to talk that sometimes they think she says things that nobody else hears. 

They don't understand that Susie might not ever talk or that her communication might always look different. They continue to support her, do puzzles with her, snuggle her, wrestle her, and overall just love her. They also love to give her piggy back rides down the hall. 

Susie's relationship with her siblings is refreshing to see. She doesn't have to talk to them, they know what she needs and wants. They know she loves them and they know how to make her laugh! They also know when she plays with their toes, it means that she loves them. 

They insist on getting her in and out of her school van. They greet her at the door when she gets home each afternoon. They get her drinks, snacks, and help give her baths. They are desperately trying to help potty train her. Oftentimes making her sit on the potty when nobody has asked them to. They never forget to get her a snack at Casey's and will give up their own sand-which or piece of pizza if she wants a bite (that's a big sacrifice for Sally). 

Typically Developing - it looks differently for everyone

As many of you know, this journey with Susie has caused us all a lot of emotions. I sometimes get caught up in the fact that Susie does things differently than other children her age. I struggle every time I hear words like typical, normal, or average because on paper Susie does not check all the boxes for a child her age. I also get emotional when I see another child her age speaking in full sentences or engaging in activities Susie is not yet able to do. 

Susie is a wonderful, sweet, and loving little lady. However, that doesn't mean that there aren't hard days or moments where Susie's speech delay causes us all to get frustrated. While most of the time we know what Susie wants, that's definitely not the case all the time. This can oftentimes lead to Susie getting really upset because she doesn't have the words to tell us what she needs.

Susie is not interested in many toys, her main motivation is food! When we go to the store she wants cupcakes or chips, not a doll. This has led us to have to buy food and let her eat throughout the store. 

Susie loves to push things, and likes anything that swings, spins, or moves in any way. 

Susie is very messy when she eats. Often leaving quite a mess behind at a restaurant (we are good tippers). Also, it is hard for us to know what she wants sometimes, so we often have to try multiple times to get it right. 

New things are sometimes difficult for Susie, and it takes her a while to warm up to things. For example, Susie loves the pool. However she loves the Hamilton Public Pool, any other pool takes some time for her to adjust. 

We recently went to a parade, Susie did not care about collecting candy, or being among the other children. She was perfectly happy watching from a distance, on my lap, eating chips. 

Susie is rarely ever quiet, she has a lot to say without using words. This can sometimes be misconstrued for bad behavior because it is hard to tell when she is happy or sad but in reality she is almost always happy, just loud!

Susie doesn't love to sit, her body is consistently in motion. 

Susie loves her iPad, and listens to music but doesn't often watch TV or movies. 

It is easy to get caught up in the fact that Susie isn't at the same level as her peers in many areas. However, Susie is our normal and she is perfect in every way.