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. 

Watch out West Morgan, here comes Tyley Sue!

Tomorrow is the day, the first day of school!!  I am excited and anxious all at the same time. I'm excited because I know Tyley Sue enjoyed school so much last year once she got settled into the routine. I'm also excited because she will now be going to the school that Tyler and I grew up in. She will be surrounded by teachers and staff that love us and I know already love her or will grow to love her. However, as fabulous as Ms. Lauren and Tyley Sue's aides will be this year, there are so many things they just don't know yet.  There are so many things the teachers in the years to come won't know. There are so many things I'm afraid I will forget to mention in our IEP meetings and our short conversations during drop off and pick up on the first few days. So, I decided to just write them out here....mainly to rid myself of any jitters! Here are the things I want you to know about Tyley Sue:


1. She's Different

She's even different from the other "special needs" children you've known in the past. Her genetic deletion has affected things in her little brain that just make her work unlike anyone I know. Please don't just assume that you know what you are getting with her because you've worked with other special needs children in the past. Take time to learn about her, ask me and her dad about her deletion and we will gladly share with you!

2. She Needs To Be Pushed...And Loved

Her sensory processing issues make it difficult for her to sit still even for a few minutes, but she can do it! I want you to push her to be the best version of herself she can be. But, I want you to love her while you do it! Her sensory processing issues also play a huge part in her oral sensory needs. She literally will put anything in her mouth, so you have to watch her-like a hawk to ensure her safety. Sometimes she can go for a while without chewing on something (at home we give her ribbons, wash rags, and chewie bands) if she's being actively engaged in something else, but her first instinct with something new is to touch it to her mouth and taste it- so just be ready for that! Some days she's a slobbery mess due to these oral sensory needs....like soaked down to her belly button kind of slobber! Please don't be grossed out about it, just change her shirt if you need to and love that sweet slobbery face!

3.  She Needs You To Be Patient With Her....Like Reallllllllly Patient

Tyley Sue marches to the beat of her own drum. You can give her simple one step instructions and she can follow them most of the time! Her language comprehension has improved a lot over the past year. But some days things just go a little slower than others and she needs you to repeat them several times or she may need you to "snap" her out of the day dreams she spends so much time in. Some days things go a little faster than others, meaning she literally can't stop her body from moving. She moves in order to feel her body in relation to her surroundings, it's just part of who she is and what she has to do to make it through the days. So, sometimes it's all about just scooping her up and getting her still for a moment so she can hear what you are saying.

4. She Needs You To Ensure Her Safety

Like I mentioned earlier, Tyley Sue puts everything in her mouth. So, you have to be sure she's not trying to eat the books and other non-edible items! Likewise, she falls----a lot. She moves so quickly and not doesn't pay much attention to her surroundings most of the time. Almost every time she just pops back up and keeps going....but if she doesn't, if she does cry or in any way let you know that she's been hurt, please pay attention. Tyley Sue's genetic deletion makes her pain tolerance incredibly high, so when she does indicate to you that something hurts, you need to know that it hurt her pretty bad. This pain threshold includes an insensitivity to hot things...so when she puts her hand on a hot grill for instance, her brain doesn't register right away to remove it, so she leaves it there, not immediately feeling the heat like we would. So, if she shows you that she's been hurt, check it out, don't just brush it off, and love on her to make it better if needed.

5. Celebrate The Little Things

She loves its. She loves to see you clap and celebrate her accomplishments. It encourages her and excites her to see you clap and high five her. Praise her for her victories, they are hard to come by and deserve to be praised. Celebrate and praise her for trying. Even if she "fails" by the world's standards, just the fact that she tried and understood what you wanted enough to attempt is a big deal.

6.  Be Ready For Anything

There are too many things for me to tell you about daily life with Tyley Sue. Above are some important things but here is a random list of things that really matter too:

• Watch her hands at all times, they are quick and will swipe things away before you know it (and they will find their way into her diaper!) 
• Help her with her food. Yes, she can do some by herself and we want her to, but she will also shove the whole sandwich in her mouth at once because her sensory issues make it difficult to feel "small" bites in her mouth, so she instinctively wants to put more in than she can handle. She will also "squish" her food all up in her hands first...again, all about the sensory issues
• She can't use a regular cup without a lid, without some help. 
• She can't use the bathroom. It's fine to push her and take her to it....I'm hoping one day it clicks, but so far we aren't really close to that yet!
• She can use her PECS book to show you what she wants....she's pretty good at it now!
• Bubbles, milk, rocking, and singing will fix most any bad day or bad mood.
• Let her love you. She loves to love. She loves to cuddle and hug you and I'm pretty sure she gives the best hugs around!!

We will be up bright and early to get Tyley Sue ready for Pre-K at WMES tomorrow morning. We are excited to be back home and look forward to all of the amazing teachers, aides and staff that will be loving on my girl this year. I know that each one of them care about these kiddos and have their best interest at heart. I'm ready to see what God has in store for Tyley Sue this year as He uses her teachers and aides to shape her and stretch her this year! 

Healing isn't coming....but we won't give up

So, let me tell you about how God has been lining up some things for me lately. God and I have argued a lot in the past months. I've been struggling with thoughts of the future with Tyley Sue and I've been praying for answers. If I'm being honest, I would also tell you that there have been times I literally haven't even had words to say to God. Times that I've just sat in silence, desperation, anger and bitterness. During those times, I can't say that I left my "quiet time" with God feeling better or more at peace-just being real with you all. I have instead left those times more angry and desperate. Desperate for what though? I've been desperate for answers and for healing. Desperate for progress. Let me expand on progress too... I don't want just an utterance of a new word that happens one time, not just a good day that maybe looks or feels promising, not just a day where we don't have complete and utter meltdowns or the infamous "poop incidents" that happen at our house; but REAL progress. I want an overnight miracle where we literally wake up one morning and she says "good morning", "I'm hungry", "Momma", and "I love you".

But can I let you in on something that God has revealed? I hope you are ready for it, because I'm still not ready. Y'all.....healing isn't coming to Tyley Sue. Not in the way we like to think, pray, or desire. It's hard for me to say these words out loud. During my times with God in the past week, I feel like I have hit a few breakthrough moments.....like the time had come for Him to really reveal some things to me...or maybe it was the first time that I was ready to listen.

First things first, as desperate as I am for Tyley Sue's healing, I need to be that desperate for Jesus...all the time. Not just when I'm seeking answers or making requests. That's just the way it's got to be. Also, just because the answer is no it doesn't change the fact that I'm going to keep on seeking, asking, knocking, begging, serving, praising, and loving Him.

This past Sunday our middle school group was on their way back from camp, so I joined in on a small group with some other friends. Let me just tell you that it was meant to be for me to be in that room last Sunday. I took some notes that day that I've looked over this week and continued to let God speak to me through them. The message was all about not giving up on your dreams....

1. Even if the journey doesn't start well.  Or, in our case, never seems better.

2. Even if the journey is full of surprises....come on now, anyone who knows our testimony knows that it's been full of surprises! God has constantly been at work. Weaving together a beautiful life and testimony to point back to Himself through us. I don't always do it justice, I don't always do it right, and I fail daily....but He has called me faithful even through my mistakes and has entrusted me to be the mother to this unique, perfectly imperfect, one in a million little girl.

3. Even if it takes a long time to realize it. Habakkuk 2:3 "If it seems slow in coming, wait. It's on it's way. It will be right on time."  So basically, it's going to be slow, but it won't be overdue-not even by a single day. He says to be patient. When I read this, I don't think that healing is coming slow. I think He's telling me that in His time, He's working good and He has a plan for this madness. And that "it" will happen on time. "It" may not be healing or progress. It may just be the moment or moments where He becomes greater and we become less. (I'll get to that in number 5 and tell you what "it" may really be.)

4. Recognize and value the process. "Process"....will we ever really be done with the "process"? I don't know. I think the process is life. Life is our process. We have to value the day to day mundane things and look to find joy even in the trials. 1 Peter 1:6-7 talks about rejoicing even though you've had to endure trials. Sooooo basically he was saying, joy is ahead even though it sucks right now. ( I think God is good with my paraphrase here and I personally don't think he minds the word "sucks").

5. Refuse to let offense stop you. Genesis 50:20....you intended to harm me but God intended it for good. I've told several people before, and I believe I've said it on previous blog posts, I always go back to this point with God.....if this is the road you have for me you better use it for good. Let me glorify your name, praise you when it's bad, and praise you when it's good. Use her, use me, use my family to bring glory to your name...just please don't let it go to waste.

If never bringing healing to her in this lifetime allows our testimony to be strengthened and shown to the people we encounter in order to make Your name bigger.....we accept. If more people will come to know God and his character while watching our life unfold and seeing our continued faith versus seeing a miracle worked, then let it be. 

Just last night at a worship concert I felt God confirm to me that healing won't come in the sense I would like. This wasn't a devastating moment like it sounds. In fact, it's something I think I've felt and quietly known for some time.  I believe that more progress will come. We will still fight for whatever little bit of progress we can gain as we pursue therapy and work with her daily.  But during this process (life) I'm called to praise Him still and find joy in it. Joy shines through even the darkest times because it's not based on our circumstances, but it's based on the One who holds our circumstances in His hands. I'm not a sad person, I won't allow a deleted chromosome to make my family unhappy. We love big around here. We have tickle fights, we act silly, we chase each other around the circle of our living room and kitchen. We play music really loud and dance like most white people dance-with no rhythm! We have family dinners.  We have amazing friends who understand and accept the good, bad and ugly that comes with my family. We have unbelievable support and love from our families. Life is good.  Now, life hurts at times too. Sometimes Tyler and I lay in bed at night and feel the weight, the burden, the heartache, the death of our dreams come down on us. But before we close our eyes we remind each other that life is good....even without healing, it's good and He is good. We have been blessed.

P.S. I would like to put in this little disclaimer, that although I feel confident in God's word to me this past week and last night that healing isn't what it's all about for us, I pray to be wrong. The flesh in me still has a fight and a desire to see a miracle, so, God, if you change your mind....I'm good with that too :) 

Doctor's Appointment and a trip to Holland...and Italy

A lot of people have been asking how Tyley Sue's appointment went last week. I've given most people the generic answer of "it's good, nothing new though". Given the fact that so many have poured into our family through this journey with prayer and encouragement I decided to give you the low down on the appointment.

1. Her head hasn't grown anymore. It hasn't grown since she was a year and a half old. Now she's three years and 8 months old. So, this lets us know that there's not been any more brain growth since then. This also explains why her progress is painfully slow.

2. We discussed her constant activity and how it's difficult for her to be able to focus during therapy sessions, at school, at home, anywhere for that matter. If you've been around Tyley Sue much at all you know she is in constant motion. Running, jumping, clapping, flapping her arms, kicking her feet, twiddling with your shirt, jewelry, whatever she can get her hands on. At this appointment, Dr. Han even noticed how high her activity level was. So, we are looking into trying some new medications to slow her down a bit. Hopefully this will improve her ability to focus and get the most out of her therapy sessions.

Dr. Han also mentioned that it wasn't something she had previously thought much about, but the mice that she involves in her research that are missing the BDNF gene that Tyley Sue is missing, are also in constant motion. They are very hyper active. So the theory of "ADHD" may not be the case, instead the hyper activity may be a symptom of the missing gene. She's curious to see how Tyley Sue responds to the medication though and it's something she will begin to study more herself. So, there's a positive, if nothing else, Tyley Sue is in the forefront of modern medicine, making history and driving the research :)

3. I asked about one of the most worrisome things for me, potty training. Of course a year ago Dr. Han told us that this would be a possibility, but it would take longer. During this visit, Dr. Han confirmed that the other children she sees with similar deletions do not potty train until at least around age 9. These are the children that aren't on the autism spectrum (Tyley Sue is) and that aren't considered ADHD (Tyley Sue is). The children who also fall on the spectrum and are battling ADHD sometimes don't potty train until much later if ever. I'm hopeful that we will be potty trained one day, but if not, I'll just keep on changing diapers.

4. Communication was the other thing we discussed. I was curious as to how the other children with similar deletions were able to communicate. The answer was pretty much the same as the potty training; some communicate on a basic level closer to the age of 9 or 10, while others struggle even longer with their ability to communicate needs.

Overall, the prognosis hasn't changed much...I had allowed myself to become more hopeful prior to this visit about the idea of potty training and communication; however now I feel like I need to redirect my focus and rejoice on the small strides of progress we've made and realize that we will probably only make small strides at a time, with some of the major goals being very long term goals. 

After this appointment I was scrolling through Facebook when I read the status of someone who was wishing that their little one, about the same age as Tyley Sue, would just ask and talk about normal things instead of some really big, adult questions. I said out loud to no one in particular, 
"Yeah, well just be thankful they can talk and tell you what they are thinking or what they need." Tyler asked me what I was talking about and I explained to him what I had just read. He smiled and said, "Ashley, just remember, we are in Holland and they are in Italy. They can't possibly understand."

We say that often around here, referencing the story below...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


So, yes, on occasion when people brag about their kids, or when they do the opposite and they complain about how much they talk, or how busy they are with sports and homework, I have a moment of jealousy. Tyler is always there to remind me though that I can't compare Holland to Italy. They are both wonderful places. They both have so much to offer. They both are unique and special. They are just DIFFERENT. Luckily, God decided to let me go to Holland with Tyley Sue and Italy with Elijah. When I stop and see if from a different perspective, it's not that bad. It doesn't mean that the pain goes away completely, or that the hope for her progress goes away, it just means that I have to choose peace, contentment, and joy right where God has us. It means that God's plan for our family will cover multiple opportunities to serve Him and glorify His name between Holland and Italy.

A picture with Dr. Han from our appointment at Le Bonheur last week. 

Sweet boy....my handsome version of Italy

Sweet Sue Sue....My beautiful version of Holland