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. 

Life Update!!

 Hello friends, 

We have been MIA, but not for lack of action, we have been busy. We have been sick on and off for about three weeks now. We have had our share of many illnesses, including the stomach flu, Flu A, upper respiratory infection, hives, and sinus infections. It has been a rough month, but Susie has made some huge strides. Susie has done many new things this month both at home and at school. 

Don't wake the beast! 

Another dr visit with daddy! 

So sick!

Fell asleep watching birds! 

I have struggled with the correct term to use when comparing Susie to other children her age. "Normal" is not the correct term, because in her own way Susie is perfectly normal. While speaking to a friend, she used the terms neurotypical (The word “neurotypical” describes someone who thinks and processes information in ways that are typical within their culture. They tend to learn skills and reach developmental milestones around the same time as their peers), and neurodivergent (The term “neurodivergent” describes people whose brain differences affect how their brain works). She also said, "this is Susie's world, and you just have to figure out how to navigate it with her."

Many things that are difficult for Susie, come easier to her peers that are neurotypical. As I mentioned earlier, Susie has been sick, which means the Doctor, which Susie despises. It is awful to take her to the doctor. However, at her last appointment Susie did pull the Doctor in for a hug. If you think the doctor visit is rough, just try giving her Tylenol or an antibiotic. If you are looking to lose a finger, go ahead and brush her teeth. Don't even think about sharing a bag of chips with her, because she licks all the seasoning off and puts them back in the bag. Turning on the shower used to send her into an absolute tantrum, now she will just run and hide, but takes a bath just fine. Sometimes, I am guilty of focusing on the things Susie doesn't do, or the things she should be doing. However, when I keep my focus on what Susie CAN and DOES do, it amazes me. 

This year we signed Susie up for soccer. I knew it would look different for her, and she has yet to participate in a game. However, at practice, she goes out there with her peers, and she runs, and plays, and has fun, which is a win in our book. This weekend, for the first time ever, Susie participated in an Easter egg hunt, not once but twice. She picked up the eggs and put them in a bag, which she has never done before. Sure, she brought her own tenderloin, but that's beside the point. On Easter Sunday, Susie participated in Children's Church, which she has never been able to do before. We only had one small donut disaster, but Dad saved the day! Susie also went to Sunday School class, where we colored a page, and only ate one crayon!! She played with a food set, and cleaned up when church was finished. She put together a new puzzle, that was unfamiliar to her. Susie also, enjoyed some time on the outside trampoline, which used to terrify her. 

A sweet friend captured this at children's time!

Pretty in pink!

Sunday school! 

Easter Sunday! 

Trampoline hair, don't care! 

At school, Susie has also started to play more interpedently and is exploring new toys every day. She has experienced a tough phase called dumping, in which she literally dumps anything and everything. She was clearing the fridge, cabinets, table, you name it. At first, it looked cute and fun, but at 1:00 in the morning (late nap) it wasn't cute, and I got out the duct tape. She also struggled with this at school, so they have changed her routine to help her, and she has done really well with it. 

Susie made a fort out of pop cans, and didn't know how to get out!! 

Independent puzzle play at school! 

Lastly, Susie has started asking, no, demanding trips to Casey's. You might be wondering how a child that doesn't talk "asks" for something. Well, Susie is a master at communicating without words. She will get her shoes, and coat and bring them to someone. Then she pulls an adult (usually her dad, he's a sucker) by the finger to the door. She will then lead him to the car and when the door opens she climbs in. If you aren't planning to go to Casey's, your plans just changed because she will begin to vocalize her wishes, quite loudly. The same happens if you try to drive past McDonald's!! 

Talked dad into Casey's!