Life Lessons Learned in Kindergarten

Just prior to the 2016-2017 school year Tyler and I sat down for the first of many IEP meetings to determine what Tyley Sue's kindergarten school year would look like. Of course, most parents envision the first day of kindergarten as somewhat of a bittersweet moment. It's a new beginning that includes more independence, new clothes, new shoes, new backpacks and lunch boxes, and new friends. For us though, we weren't too concerned with any of those things and instead our focus was on what school would Tyley Sue attend. Would she have a one on one aide? Would she stay at school for a full day or a half day?  How many therapy sessions would she be pulled out for each day? Who will change her diaper and help feed her lunch everyday? Will she be allowed to have her straws or bottle in the event of a meltdown?

 As you can see, when a child with severe special needs is in the school system there are a lot of things to consider. These things aren't just considered by the parents, but also by the teachers, therapists, principal, and sometimes even more people become involved to help assist in finding the best plan for everyone involved. There are a lot of moving parts and it can be a highly emotional time. The educators that we have worked with so far have been absolutely phenomenal. West Morgan and Morgan county in general have been blessed with wonderful educators who do their job with excellence! However, it doesn't seem to matter how wonderful they are or how excellent they perform their job duties, the frank discussion of exactly how far behind your child is from the benchmark is extremely painful. During our first IEP meeting we were shown the type of work that a typical kindergarten student would be able to complete upon their entry into kindergarten. Of course we looked at that and immediately knew that Tyley Sue was significantly behind and wouldn't  even be close to that level of work by the end of kindergarten. We were encouraged to send Tyley Sue to a self-contained classroom setting at Sparkman in Hartselle where there would be other children with a variety of special needs and aides, therapies, and equipment that could help her.

For a lot of children this is the right choice. It may even be the right choice for us at some point. I've promised myself that I will always remain open minded about our options, but I knew in my heart that for right now we needed to be at West Morgan. The decision for us was largely centered around the desire for Tyley Sue to remain a part of her community, our community. Growing up in school I didn't have the opportunity to share my environment with others that had needs much different from my own. 

My first experience with a person with special needs was as her mother. 

I didn't have any experience with someone who was non-verbal. I had never spent time with someone who had a significant sensory processing disorder and needed to move----CONSTANTLY. I had never shared a meal with someone past infancy who was unable to feed themselves and didn't know not to shove all the food on their plate into their mouth in one swift move. I had never sat next to someone other than a small child under the age of three who still wore a diaper. I had never experienced someone who had, not just a desire, but a true, deep down, visceral NEED to chew on something all the time and inevitably drooled, slobbered, or slung their spit on me. I had never experienced any of those things until I became Tyley Sue's mother. As I considered these things in making our decision to remain in Tyley Sue's community school, I thought about the children in her class and others within the school that would encounter Tyley Sue in the hall, on the playground, in the lunchroom, and in assemblies. I thought about the things Tyley Sue has already taught the adults in her life that spend time with her and realized that this wasn't just about Tyley Sue. Our decision to keep Tyley Sue in a "typical" classroom setting with "typical" peers allows other children to be a part of a person's life that they may not have chosen to be a part of otherwise. I also heavily considered the fact that at times she may be a distraction within the classroom. Her behaviors would be something that may take a little getting used to by others.However, the other children that Tyley Sue shares a class with and her school with are also learning something from her that can never be taught on a white board. It can never be taught with flashcards. It can never be understood by reading it in a book. Compassion, empathy, love, kindness, acceptance, and thankfulness are just a few things that these children have learned from her. There are children all over the school that accept Tyley Sue for everything she is and everything she is not. They run to her and hug her. They hold her hand and walk her down the hall. They help show her the way through the tunnel on the play ground and push her on the swing. They help keep her safe from putting something in her mouth that she shouldn't. They stick up for her. They care for her. They are her friends. As they grow up with Tyley Sue they will surely become more aware of her differences and my prayer is that it produces an awareness of just how blessed they are. I hope they are thankful for simple things that come easy to them. I hope they are thankful that they can communicate their needs with ease to others. Think for just a minute about all of the needs that you had today. Now imagine that you couldn't tell anyone what they were. Imagine being hungry, but not being able to get yourself something to eat and you can't tell anyone your hungry so they can fix it for you. Maybe you have a headache and the medicine is available, but you can't get it and can't even ask someone to get it for you. Maybe someone said something that hurt your feeling or physically hurt you in some way, but you can't share with anyone else how that made you feel and you can't take any action to stand up for yourself either. Our ability to communicate with others is absolutely something to be grateful for.

With every little detail we consider for Tyley Sue's life and well-being, we also have Elijah in mind. What will make things as "normal" as possible for him? Life with our family looks different, very different, so every opportunity I have to help give Elijah some normalcy I will.  Elijah will be in school soon and playing t-ball, soccer, making friends.  He is Tyley Sue's "big" little brother. He protects her, loves her and wants good things for her already at such a young age. There will, without a doubt, be kids at some point who aren't so nice to her and who may say mean things. He will hear these things, he will be faced as a young child with heartache on his sister's behalf and will be forced to make a choice. So, for every child who gets to encounter Tyley Sue on a regular basis, they will be prepared for her differences. When they see her at the ball fields they won't be caught off guard by her differences, they won't think twice about her flapping her arms, jumping up and down, and chewing on her straws. They will KNOW Tyley Sue and she will just be Elijah's sister. 

There are some things we learn in life that we didn't have to be taught, it just happened. Learning doesn't always require someone to stand up and give a lecture on the subject. The biggest lessons in life that we learn come from experience. There are a group of kindergarten students that have learned things this year that some adults haven't even learned yet. I knew these children were loving my Tyley Sue but today I received a gift from her teacher who shared with me pictures of just a few special moments with her friends loving her and helping her in ways that she can't help herself. Seeing these pictures today gave me peace that I made the right choice. Not only has she made some progress this year in regards to communication and following instructions, she has had the opportunity to positively impact others just by showing up for school each day. I believe that God can use anyone and any situation for good and His glory and this is one small way that He can use her. We will have another IEP meeting soon, I'm sure, to plan for next year. I will be faced with tough decisions again and will listen with an open mind to the educators who are there to help us. As I sit here now, I know that for this school year I made the right choice. There have been days that I doubted it but not today, not anymore.