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. 

Non-verbal communication

 I have talked a lot about the fact that Susie doesn't communicate verbally but I haven't talked much about how she DOES communicate. 

One thing to know about Susie is that she is extremely independent. Susie gets what Susie wants when she wants it, and those close to her usually know what she needs/wants. Susie is also a problem solver, and has figured out how to navigate many difficult tasks. 

One example is when Susie wants a drink. Susie won't ask for a drink but she will get a cup and a bottle of propel and bring it to one of us to help her. If the bottle is still in a package, you get the whole package in your lap. 

Another example is food. Susie loves popsicles, so she climbs into the freezer to get one, and brings it to someone to open it. 

Susie loves butter. So, she will get the butter out of the fridge, a butter knife, and bread so someone can help her make a butter sandwich. She will do the same with peanut butter. 

Susie will move chairs, climb cabinets, or get the desired item to get assistance. 

Susie also grabs us by the finger and leads us where she needs us to go to help her. 

We know when Susie wants to go to the pool, she grabs her swimsuit and puddle jumper and hands it to you until you oblige. She also gets sunscreen and hands it to someone to help her! When we leave the house and don't turn towards the pool...she communicates her distaste quite well. 

When Susie is cold, she will back into you and wrap your arms around her. 

Susie understands a lot and follows directions (when she wants). When we say "Susie bath" she runs to the bathroom for her nightly bath. 

When we say "watch for Annie" (Annie is her driver to school) Susie goes to the window to watch. We can also tell her "time to go bye bye" and she will grab her shoes! 

Although we are struggling to get her to go potty in the toilet, Susie knows when it's time to be changed. She will get a diaper, and wipes and lay down. (You would think potty training wouldn't be hard, right?) 

Susie hugs, and kisses her loved ones. She also shows affection by throwing her head at your lips (yes, it's led to a few sore noses). She also loves to pet people's arms (usually complete strangers) and will bring your hand to her head as a term of endearment. 

So next time you see Susie, and she plays with your arm, consider yourself loved! 

Just a cute picture of sweet Susie! 

Why doesn't Susie talk?

Susie went to the Gas and steam engine parade!!

The million dollar question is, Why doesn't Susie talk, or when will she start talking? And the painful, honest truth is, we don't know.

 Susie started saying a few words at an early age but then completely stopped. Susie makes noises and sounds but doesn't use words or mimic others. As I mentioned before, Susie was evaluated by the school district and it was determined she qualified for special education services. Along with going to an early childhood special education preschool, she receives speech and occupational therapy. We know she hears well, she has been tested a couple of times. Schools are not equipped to give medical diagnosis, they determine if a child meets eligibility for an IEP through academic testing. 

The next step for Susie is a medical evaluation through Children's Mercy. It a grueling process, and honestly one that has caused many tears as I fill out paperwork about the development of Susie. As a special education teacher, I understand the paperwork and have given it to many parents. However being on the other side is emotional. Once we get our paperwork done, and her school gets theirs done, we will be scheduled for an evaluation date. It's a long waiting process but hopefully this will give us more insight into how Susie learns and get us on the right path to growing and excelling. 

A medical diagnosis will not answer our burning question of "when will Susie talk?" The truth is, she might not. Therefore we must figure out ways to help her communicate more clearly (because she does get her point across without words.)We are currently waiting on all the equipment to set her up with an AAC device, which is an iPad that will be used as a communication device. If you know Susie, she runs an iPad better than most adults! 

Fall 2022 - part 2

 During the time my mom was in the hospital we had no babysitter. My husband and I were taking turns working and staying home with Susie. One October night I ran into a local daycare provider at Casey's. When she asked me how my mom was, I cried. I gave her a tearful update on our lives and by the end of the conversation she offered to help us with Susie for a few weeks as she had an opening. For what felt like the first time ever admitting some of Susie's struggles, I poured my heart out to her telling her Susie didn't talk and wasn't potty trained. She sweetly assured me it would be ok, and they would do the best they could. Susie had never been with anyone other than Nana and had never been around many other children. I was so nervous, but the daycare provider was extremely gracious and loved our little Susie each day. 

Since we knew this wasn't a permanent fix, we began brainstorming what would come next for Susie, because at this point, we didn't know if or when Nana would be able to keep her. Preschool was not an option, as she wasn't potty trained.  One day while crying over some pizza in the hospital cafeteria with my sister she suggested that maybe there was a school that could help Susie learn...she doesn't know this, but it stung. I still wasn't ready to admit Susie needed help. A few days passed and my principal at school asked me if I had ever considered sending Susie to UCP (a preschool for early childhood special education students). It was at that moment I knew it was time to do something. I went to my fellow special education teachers, and speech pathologist and told them I was ready to start the evaluation process. This was extremely emotional and difficult for us, and my colleagues/friends were amazing. They were very professional and understanding and they worked quickly to conduct the evaluation. I wasn't surprised by the findings, Susie qualified for an IEP (individualized education plan) under the category of YCDD (Young Child with a Developmental Delay). Susie's scores qualified her for UCP, and she started classes in November of 2022. 

First Day of School 

Writing on the white board!

SMILE!

Fall of 2022 - part 1

 As I mentioned in my previous post, October of 2022 put us through the wringer. My mom, nana, had babysat Susie at our house since she was 8 months old. They have a tremendous bond and love for one another. In late September my mom got sick, which wasn't abnormal for this time of year. So, my husband and I took turns taking off work to stay with Susie for a few days. After a few days of this it became apparent that her illness this time was different. On October 4, we ended up calling an ambulance and after an eventful evening, she was admitted to St. Luke's cardiac ICU with what they assumed was a heart attack. After a few days, and several tests it was determined she had congestive heart failure and her kidneys were failing due to all the excess water. 

This was obviously a difficult time for my two sisters and I as our dad passed away several years ago and our mom had always been our rock. Over the course of the next several days (23 to be exact) my husband and I juggled staying home with Susie and working as well as visiting my mom. Not to mention Susie started getting sick every few weeks again...we were tired. Finally on October 27th my mom was discharged to the local nursing home on oxygen. After 5 days there, we brought her home to continue rehab. At this point Susie's delays were not correcting themselves and no progress was being made in the area of verbal communication. 

Just an example of some of the crazy stuff Susie does that gives me a headache! 

She painted with peanut butter. 

Halloween 2022. Poor girl was sick with an ear infection! 

Year 3 - an Eventful One

By the time Susie turned 3 in 2022 it became more apparent that she was significantly delayed in academic learning as well as language. Due to traditional social norms, we tried our hardest to potty train Susie, which would lead to crying, screaming, and fit throwing, Susie didn't love it either. Susie was not interested in activities that involved sitting and did not have the attention span to do much learning. At this point I was starting to rack my brain and tried to come up with ways to help her overcome her challenges, but I had little to no luck. Susie was not sleeping well, and it was taking a toll! Not to mention she had frequent, recurring ear infections. Finally in May 2022 she got ear tubes put in. It helped her feel a little better but wasn't the magic fix I was hoping for! At this point we were still just waiting, hoping any day that her language would pick up. I found myself in a little bit of denial. Only a few people knew how delayed she was. I felt very protective of her, and felt a need to shelter her. God had other plans and in October of 2022 our lives took a turn...

Susie does a lot of crazy things...but the time she got in the bath fully clothed.

 with a chicken leg and a fork was one of our favorites!!