Kindergarten

 Just like that, Summer is over and we are 2 weeks into school!! I had so much anxiety about the change this school year would bring! Sam started 7th grade, Sally 5th grade, and Susie Claire headed to Kindergarten. I was nervous for Susie and I to be in the same building, and sending your baby to kindergarten is hard, no matter what. 

Kindergarten Teacher, Mrs. Greenwood

Back to school night!

Many people have asked what Kindergarten looks like for her. Susie has a para with her at all times. The para changes throughout the day. Susie spends the majority of her time in a special education room with a para, a teacher, and a few other kids. She loves doing puzzles and other activities. I also think the paras are getting a lot of snuggles. She goes to recess, and most specials with her classmates. She also has occupational therapy and speech therapy a few times a week. Susie does not yet eat lunch with her peers, because she likes to steal food :) 

First day of School! 

She loves to swing!

Mornings are so hard!

Susie has done amazing so far. She is getting into a good sleeping routine and is making it through the day without a nap. She is cooperating to get her hair done and clothes on in the mornings. She was not getting up until about 10 so this is a big change. She walks down the hall and carries her own backpack. She loves the paras and teachers and is responding well in therapies. She's eating well at lunch and loves the playground. This week she even pooped on the big girl potty! She is utilizing her AAC more as well! 

Coloring in Art Class

Playing with her paras.

I try my best to not let her see me, and to not respond when I hear her (happy or mad). I do peek in every once in a while and watch her swing at recess from a window! After school she waits for me with a para and then I either take her straight home or she sits at a table and has a snack while she waits for me. She has done so well so far, and I can't wait to see how much she grows this year! 

Waiting on mom after school! 

Twinning with one of our favorites!

Routes

I have mentioned that Susie loves routine, and follows a chosen route at the pool. If you haven't seen her, it's quite amazing. Susie has repetitive behaviors that are fascinating to watch. It's very intriguing and I really wish I knew what she was thinking as she creates these routes and routines.

She hands us sunscreen when she's ready for the pool.

It took me a while to realize that some of Susie's Quirky behaviors were signs of Autism. Susie is selective in what she likes and enjoys doing, but she when she enjoys something, she does it over and over and over. 

Playground at science City!

Susie loves puzzles. Lately she has had one favorite one. It's a wooden puzzle with sea animals. Susie will sit in the floor and do it 10-15 times. The other night she was putting it together and every time she picked up the octopus she would hit her arm and then slam the octopus. She didn't do it with any other piece, just that one and she did it the same way every single time! We still haven't figured out why she was mad at the octopus! 

Puzzles at school!

We visited Chilli Bay last week, and for 2 hours she walked the exact same route. She started at one end of the baby pool by diving in. She then would walk to the steps, get out, walk to the other pool, jump in, get out, and start all over again. Ty and I were getting tired so we just each manned a pool! 

Pool time with the family!

The other night Susie was walking a routine around the living room that involved a dangerous balancing act on the trampoline. She walked by my mom, mom touched her back and said, "what are you doing." From then on, every time Susie went by she would not move in until Nana touched her back! 

I took Susie to a different park a week ago. It took a minute but she developed a routine. She started in the swing, jumped out, and  stoped the swing. Then she would run across the playground, touch the fence and then head back to the swing! 

We were on the porch one afternoon and Susie was playing in her water table. She would duck her head in and then come drop the water on me. I told her to go away, and she would walk away. Then she would start all over with dunking her head, and dripping it on me. To mess with her I started waiting her out. She would grab my arm to get my attention and when I would say "go away" she would run off! 

Next time you see Susie out somewhere, see if you can figure out her route! They are always unique and entertaining to watch! 

Behavior

Hello friends! Summer is sure flying by and I don't like it one little bit! Susie has had a very busy, but fun summer. She is down to her last few days at UCP, and will have a few weeks off before starting KINDERGARTEN! We will save that for another post. 😭

Susie joined the Sunday School class this week!

In this post I want to address Susies routines and behaviors. In the past few weeks, we have had some situations in which people think Susie can't/shouldn't be made to follow rules. However, we have also had a few instances where people don't realize that sometimes she's doing the best she can in the situation she's been placed in. 

I made her take a picture by the UCP sign, she didn't want to stop playing! 

Every child is different and fulfilling their wants and needs is often trial and error. Susie thrives off of routine and structure. Despite her inability to speak, Susie knows right from wrong, and can follow directions. However, that doesn't mean she always likes what she's hearing. This sometimes leads to fit throwing or crying. A major misconception is that non verbal = quiet, and that's far from the case with Susie! 

Her Dad gets the best pictures of her! 

For a long time, I was nervous to take Susie places because she does have a difficult time in some situations. However, we have learned how to accommodate her needs, and avoid situations that could lead to a melt down. Like driving by the pool with no intention to stop and swim!

Fireworks really stressed her out, so we watched from a distance! 

Just this summer, Susie has learned that at the pool we take a break every hour and get a snack. She has never done this before, and it was not popular at first, but she now does it with little fuss. Susie has also learned that at Casey's (her favorite place in the world) she must give the cashier her snack before she can have it back. Last week, she even gave them money to pay for her snack. Susie also knows that the gate to our front porch should be shut, and if it's not she takes care of it. She does the same with all the bedroom doors. Susie is also responding to "come here" "can I have a hug?" "bring me a cup" and "time for a bath." Susie is following the command of "sit down" and is holding hands really well in public. Susie has also started to respond to "tell me you are sorry," by giving us a hug when she has done something unkind.

She loves her brother and sister! 

I would be lying if I said Susie never has fits anymore because she absolutely does. However, I feel the more people that know her are eager to accommodate her and assist us in anything we need. Sometimes that means giving Susie the chips right out of your mouth or a swipe of your cake icing! 

You don't normally want to share chips with her! 

We have had a few run ins in the last few weeks in which I wanted to give people a lesson on having compassion. But most of the time, people we encounter who know our story are wonderful and nurturing. 

She loves her brother's Godzilla and will give him the remote to work it! 

Since Susie was officially diagnosed with Autism I have felt a sense of validation and acceptance. I have mentioned it before but once we learned to live in Susie's world she is thriving!

Thank you for reading along and sharing in our story! If you see me in public and have a question, please don't be afraid to ask. I love sharing our story and often times I learn from those conversations too! ❤️

Sweet Summertime

 Summer is here and it's Susie's favorite time of year, POOL TIME. Susie adores the pool, specifically the Hamilton Pool. 

For the most part, Susie has always loved water, and has had zero fear. She has always liked baths, except for one point in time when she was terrified (we think it was maybe the drain that scared her). 

Baby Susie at the pool!

Susie has always been good about wearing her puddle jumper at the pool. Which I now realize is because she probably likes the compression it provides! We are thankful she likes it, because she will jump into any area, whether we are there or not! She is not afraid of getting her face wet, and will move her arms in a swimming motion. 

Always loves her puddle jumper! 

Susie is a very routined gal. Once you start something with her, you need to expect to spend every waking moment doing that activity. Don't even consider driving past the pool, it won't work in your favor. No, Susie can't tell us when she wants to go to the pool. However, it becomes obvious when her puddle jumper, water shoes, swimsuit, and sunscreen wind up in your lap! 

While at the pool, Susie picks a route, and repeats that route until it's snack time. Her route is different every time. It usually includes jumping in at the same place, climbing out at the same place, or walking to an area of the pool to stand! This year, we are trying to enforce break time. In the past she has been able to stay in the pool during break, but this year we are making her get out! She doesn't always like this idea! 

Daredevil 

When Susie is ready for a snack, she runs to the window, and the concession stand workers wait until we come with money! Most of the time we will give Susie two choices and she will pick what she wants. Sometimes, she helps herself to other people's food. Thank goodness for a small town! 

Swimming calls for a pepsi

Snack time!

Now, being around water is not always a fun time for Susie. She mostly likes her pool, and her pool only. She gets overwhelmed at a new and unfamiliar place. Susie also hates sprinklers, fountains, or water hoses. She cannot stand a shower or a splash pad. If she thinks we are turning the shower head on she gets violent and runs away! She will dip her head in a bucket of water but will not tolerate being sprayed! The best explanation I have for this is that she cannot process the sensation of the water being sprayed on her and it overwhelms her. 

Not so sure about a new pool!

That being said, Susie is quite curious about the shower and will stand outside the curtain while we are in the shower, but doesn't offer to get in! She also has been interested in rain and one night during a rain storm we sat on the porch and she purposefully put her hand in the rain to feel it! This is a huge step for her! 

Doing a rain dance! 

We did have one scary incident at a friend's pool last summer in which Susie jumped into the pool without a puddle jumper. She knew what to do and was headed to the ladder as her dad jumped in to get her. Since she couldn't tell us how she felt, we headed to the ER where they checked her vitals, and all was well. We now put the puddle jumper on as we leave the car, and take it off when we get back in the car seat! 

Thank you for continuing on this journey with us! I have had some people reach out with questions, please don't ever hesitate to ask me anything. We love sharing our story and learning and growing with our friends and family! 

Susie's World

 Hello friends, it's been nearly a month since we received Susie's autism diagnosis. Although it gave us confirmation, it didn't really change anything in our daily life. We have been accommodating Susie's special needs for quite some time. We are in the process of getting extra resources to help her succeed in school and just in life in general. In the meantime, there are things our family does everyday to keep Susie safe and to accommodate her needs. 

Dad and Susie!

Eloping, or running away is an autistic tendency that we haven't had too much trouble with, until we did. Recently Susie has fallen in love with the back yard because of the trampoline. So, every time we would open the front door, Susie would run to the backyard before anyone could catch her. One day, she bolted toward the road. She is usually pretty good about holding our hands but when she wants to do something, she's gonna do it now! We solved this issue by building a gate, and new railing on our front porch. Susie is extremely happy to come outside and the temptation for her to bolt is gone. 

Dad and Sam working on the gate!

Susie watching the boys finish the rails!

If you are familiar with my house in the summer, I always have hanging baskets of flowers EVERYWHERE! Last summer this became a huge problem for Susie. She was eating the dirt and swinging the flowers so hard she was breaking them. This year we decided to cut back drastically in hopes to not overwhelm her with too many flowers. She has done great so far at leaving them alone. So, if you drive by my house and it looks different than most summers, now you know why! 

Simple, but pretty! 

Susie is a strong creature of habit. One Sunday, Susie wandered into the adult Sunday School room at church. The kind people there gave her a donut, her favorite. Now, every time we get to church she heads to the Sunday school room to collect a donut. The Sunday school class doesn't do this every week, so dad goes to Casey's before church, hides the donut and plants it in the Sunday school room for Susie to find! 

Donut time in church! 

I believe I have mentioned it before, but Susie loves to get in the fridge. She gets tubs of butter, cream cheese, etc. as you can imagine, this can become quite the nuisance and has the potential to make her sick if she eats too much. We have had to install a fridge lock, multiple, actually because she's sneaky and has broken/figured several of them out. However, don't worry, she still gets plenty to eat. She will take one of us by the hand to the fridge or freezer to get us to open it for her. This creates a bit of an inconvenience for everyone else, but we just need Susie to be safe! 

Fridge lock

Freezer lock

Susie doesn't do the best in restaurants, unless it's a buffet and the food is readily available. Last week, we were meeting my sister and her daughter for Mother's Day. I thoughts for a while where we could go that we could have a successful lunch with Susie. I had the idea to have a picnic in the park! We could all eat, and visit while Susie, and the big kids got to play! It turned out o be a wonderful visit!

Eating and playing at the park! 

Learning to adapt to Susie's needs isn't about "letting her get away with murder" or "not making her mind." It's about meeting her where she is and helping accommodate her needs so she can be successful. The best advice I have received in regards to Autism is it's Susie's world, we just have to figure out how to be a part of it. 

Autism Diagnosis

We love bubble baths! 

Wild hair, don't care! 

Sweet soccer girl! 

The trampoline is her favorite!

 Today was the day we have been waiting for, for quite some time! We officially have a diagnosis for Susie of Autism with a Language Impairment. She was diagnosed as a level 3 autism, which is the most severe level. 

While we knew this day was coming, it was still emotional. We have a wide range of emotions, but mostly we are thankful for answers. While we wish things could be different, these are the cards we have been dealt. Although Susies childhood looks different than we planned, she still lives a beautiful and full life. We feel blessed that God chose us to be her family.

Thank you for all the prayers and kind words over the last several months. We appreciate them more than we can express. However, our journey is just beginning. This diagnosis opens up new opportunities for us to learn and grow and we hope you continue to join us on this journey. 

 

A Long Time Coming

 Warmer days are coming, and boy is Susie happy about it! She is spending a lot of time outside and on the trampoline or playing with bubbles! 

Susie played soccer!

Susie has been loving the trampoline. 

Susie saw some dinosaurs.

We had Susie's parent teacher conferences this last week! She is doing so well! I am going to share some pictures of all the exciting things she has been doing at school!

She loves to build!

Motor play! 

Coloring! 

Watering the classroom plant! 

We also got a surprising, yet expected phone call on Tuesday April 9th at 3:00 (this part is important for the story). We have been waiting on this phone call since late August, so when I saw "children's mercy" on the caller ID my heart stopped! They were calling to finally schedule Susie's behavioral evaluation, in which we will hopefully get answers as to what causes Susie's delays. Their first available appointment is Monday, April 15!! I was shocked, we waited so long, and now we don't even have to wait a week! 

We have to be at the downtown Kansas City Children's Mercy location at 8:30 am. The evaluation will take around 4 hours. I know it will be a long, emotional day, but we are ready for answers and to move forward with her learning journey! We will not get results until April 23rd, through a tele-health conference. 

We ask for prayers for all of us on Monday. Please pray for patience for Susie. Emotional stability for me and Ty. Informative and knowledgeable doctors, and most of all please pray that we get answers that help us move forward and learn about how to help Susie continue to thrive.