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!