Wednesday, August 5, 2015

before school begins.

I have never walked this specific path before. I have taken kids to school on their first day of kindergarten and cried after drop off. I have been nervous for new adventures, but known in my heart they would love it. I have never had to navigate public school with a child who had special needs. Our time at Reese's last school was special bc the program was for children with disabilities. Now, that could mean in need of physical therapy, speech delayed, cognitively delayed, etc. Many types of needs and diagnoses could get you in to the program. Half of the day was inclusion into mainstream - and really, I thought the transition for me would be much easier than it is.

I am 3 weeks away from sending Reese into a classroom that is 100% mainstream. She is absolutely ready for this. She knows all of her letters, the sounds of letters, her numbers and how to add them. She is full of jokes and smiles, she can run around and play with her friends, and loves to be silly.

But here I am, writing an open letter, I suppose, to her teachers and friends. Friends that are yet too young to even read and teachers she may have in the immediate future, or years to come. And to all teachers and friends of those who have a new kid in class who is just has something extra special and different about them.

Be patient. It may take Reese an extra second to answer your question, but it's there. She just is too busy thinking about whether her answer is correct or not. Remind her that she does, in fact, know the answer so to just say it. Also, she may forget that same answer tomorrow, when you ask. She knows it, but just can't get to it as quickly. But man, oh man, she cannot wait to see your eyes light up when she gets the answers correct. If you don't understand something she says, try again later and you will. She has so much to say if you just wait for it.

Be safe. This is all overwhelming and new - just like it is for a lot of kindergartners, but for Reese, she doesn't really understand how new or different it is from previous years. School was a safe place for her. It was a place where all of her teachers are her best friends and her classmates are just like her. For her, kindergarten will be the same way, so please help her remember that it is, as always, the safest and best place to spend your day. Give a hug when she is sad, don't just give her the facts about me coming back at the end of the day. Help her up when she falls, instead of telling her to brush it off. Sometimes being a safety net is just as important to teaching those life lessons. She just wants a cuddle once in a while, but teaching her a lesson on getting out of your seat will break her spirit for a week. She is a rule follower and will never have her "name on the board" or "points taken away" or anything like that. She can't wait to help you, as soon as she trusts that you'll let her. That is what happens when kids spend a lot of time at the hospital, as they grow up - they have to learn to trust the people in the room are the ones that will keep her safe from harm.

Be kind. Reese's AFO boot is cheetah print. To all her classmates, "pretty cool, huh?" It helps her so her toe doesn't drop when she's trying to walk. She can't use her right hand that well, but "bad arm" is it's name and it does what it needs to do and learns more every day. Her front teeth are gone because some of her meds ruined them, but who wants to brush that many teeth anyway, right? ;) Reese's hair is short and awkward, sometimes, because this time last year, she was still basically bald. I knew she'd start kindergarten with a cute bob - and that is how it looks to be. She is just like YOU. She wants to play with you and make you laugh... even if she is the size of a 3 year old.

Be diligent. It takes Reese a few more mins to get things done in the bathroom. I will try to keep her in short dresses so that she doesn't have to deal with leggings often, but please keep an eye on how long she's been in there. It is possible that she's just trying to get her undies into the back of her leggings and "bad arm" is being a pain... maybe send a friend in to get her. She will have an aide on the playground, at first, to teach her the boundaries, but please try to remind her, in other locations, "step!" because she only has one eye to catch that drop. Eventually, she'll remember where all the steps are, but she just needs you to be her extra eye for a bit.

Be you. Reese cannot wait to get to know her new friends and teachers. Everything written up there, teachers already know and parents already try to teach their kids... but I still have to type it out before my emotions get the better of me. She loves so fiercely and I can't wait for her new school to get to know her like the last one did. I want to cry when she graduates kindergarten because I loved everyone so much. I want to miss her daily because she just loves school so much and cannot wait to go the next day. I would never tell someone how to do their job or be someone they are not, but it is important to help people know who Reese is, also. And she's just so many things that are worth waiting for.

The next few weeks will be for screeners, info meetings for GT and kindy, 504/IEP meetings for both S and R, back to school night, and more. Dentists appointments are made and they will have squeaky clean teeth. I have paid too much for new lunch boxes that my kids love, but that Reese can open easily. I need first day of school dresses, still, though, and that will be a task in itself. Reese moved into the pre-kindy class at church (by herself - she had been wanting to stay w Miller, each week) so that she is in a group of her peers and it has been fabulous "practice" being w kids that may be in her classes.

Her MRI results yesterday said "stable" except for a small debate over something like 1mm of possible growth that they don't even really call growth. All of that to say that we are status quo on chemo right now. We will re-work our schedule to going to chemo on monday afternoons between the end of the school day and 5:30 dance class. Once a month she will have to miss the day for an appointment downtown, but other than that, she's all yours, kindergarten. She doesn't have low counts, doesn't have hospital stays, usually. So, normal.

I wish that I could tell every teacher something special about each of my elementary aged children. I wish Aidan's teacher knew that she was sometimes too shy to be overly confident, but that she will knock your socks off with her brain. Sawyer's teacher needs to know how absolutely special it is to have such a unique kid around who wants to learn so badly, but just needs a bit of help along the way.

...and at any point in time, remember that they have, and truly need, each other. They are going to want to wave to each other, if not hug each other, in the hall if they pass on opposite lunch schedules. They are going to want to sit by each other in bus or car line. All 3 of the elementary aged Skelte girls are a team... a team with their littles, at home, who they'll talk about throughout the day or write about in their daily musings.

Next stop... kindergarten.


11 comments:

  1. You are so amazing Amanda! I am one your "silent followers" but felt the need to comment on this post as it really spoke to me (and made me tear up!) I am a teacher, but was previously an Educational Assistant who supported students with special needs. This "letter" allowed me to see into the heart of you, a parent, and made me emotional thinking about how hard it is for you to trust us with your kiddos :) I know as a teacher and an Educational Assistant I would have found reading this very helpful, and it definitely would have set the tone for me as someone new working with Reese. Maybe you would consider providing her team at school with something similar? Perhaps not as personal, or as detailed, but a one page "About Reese" type document for them to reference or read over before getting started with her in a few weeks. Heck, you probably already have!! Good luck to YOU, Mama and of course Miss. Reese, she is incredible and will continue to blow your socks off- no doubt!!

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    1. I wish that was a requirement for all elementary school kids! "Here is a letter from my mom tell you all about the nitty gritty of ME!"

      Those first few weeks might be a bit easier! Thank you so much for commenting and for everything you said. Means so much.

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  2. This is precious! I'm so thankful for your posts and blog. Hailey started high school two years ago bald and I too wanted to write these words, and tell people these thing.... On a much older scale but similar struggles. I was amazed at how the kids treated her. They were amazing!! I can't imagine anyone not loving this sweet girl of yours. She is one of my favorite littles to watch through technology! You and your family are such a blessing to mine!

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    1. Oh I can't imagine how hard that was! Thank you so much for your sweet words. Your girl is so strong and amazing.

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  3. In my youngest's K class, it was 100% mainstream with all kinds of children with all kinds of issues (including him). Not one kid batted an eye at the other's differences. Only questions and then invites to play. If she doesn't have an IEP, you should request one. She will need the school based OT anyway. None of what you wrote is anything the teachers aren't expecting. I'm surprised they didn't meet with you at the end of the prior school year. I walked into the school the April before my new kinder's first day of school in September to hand them some paperwork. They requested a quick meeting and I went in on May 1st to address the team.

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    1. oh yes we have a totally ironed out IEP and have had several meetings (she's had an IEP since Jan 2014) ;) this is just heart feelings. haha her transitional ARD was april and she has her yearly again in november. Plus extra things in between. They are amazing and all of her therapy has been set up for a long time. I didnt think anything I said was revolutionary ;)

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  4. Awesome Mommy, lucky kids! When, not if, when you write, and publish, the story of Reese, please include every single blog. You cannot imagine the impact you would have. Not only to parents trying to navigate the path you have already walked and mastered, with all of the ways you have made raising an awesome family with tons of kids and a very ill child, but because it is a story that is sad, happy, frightening, gut wrenching, euphoric and, often, just plain freakin hilarious. I would buy 6 copies. Because someone very wise once told me, "when you read a book that touches your heart, buy 5 more copies and give them to others who need their heart touched". Write it Amanda!! Because "if you write it, they will come" it could be in every pediatric cancer center in this country. To offer help and guidance to so many who are on the path that you have walked with so much grace.

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    1. haha! Thank you! Man, I would love to do something like that - and thank you for your motivational words. You are awesome.

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  5. My daughter is going into her second year of ECSE, and I'm terrified of mainstream, which will happen when she begins Kindergarten next year. Good luck to your family. I'm sure Reesey will do great, but I'll be watching for updates for reassurance. Thank you so much for sharing this. It's nice to feel less alone.

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    1. Oh friend, it will be wonderful for both of us!

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  6. Beautiful post Amanda, blessings to you all this new year ♥

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