This has been a very busy weekend for our family with fall activities! And we still have two more days of fall festivals, a field trip at school, and trick-or-treating!
It is completely evident that Kendall has come a loooong way in the last year. Her tolerance for outside and crowds is astonishing! Her interaction and awareness of her surroundings and wants and needs is even better.
She did great at Daddy's work group family day at the zoo yesterday. We came home for a quick nap and then took off to a friend's Halloween party. There were tons of kids and Kendall was battling some high sugars (and a UTI diagnosed on Thursday) so she was less than thrilled about pumpkin painting, cookie decorating, breaking a pinata, balloon animals, and face painting....yes, they had ALL of those things! But she was very excited about the bounce houses. She desperately wanted to bounce with all the kids. Her brother laid down the law in the bounce house, and we put her in there. Unfortunately, she only lasted a few minutes before totally freaking out. But, I would have freaked out too with a bunch of rambunctious boys bouncing next to my head and not being able to move away. She cried the whole way home, but when we got home she did fine with the alternative, which was jumping on the trampoline. I was a little bitter about the whole deal, but today I'm better. We'll just continue to make adaptions for our sweet girl. Really, what else can we do?
Yesterday we had Kendall's ARD and discussed the results of her AAC evaluation and Music Therapy Evaluation. Justin had to catch a plane, so my sister tagged along for support (and my much needed comic relief!)
ARDs stress me out. I know everyone has Kendall's best interest in mind, and we have a great team, there's just something emotionally draining about the intensity of getting it all down in writing correctly. I know my rights. I know I can go back to ARD at any time. I get it. But it's really not that easy. There are so many people involved and it's very difficult to find a time that works for everyone. I trust the team we have with Kendall, but there isn't any guarantee that they will all be around doing the same thing in the same place, so it has to be official.
I had my list of questions and concerns in a binder that I spent a ridiculous amount of time organizing. I didn't even open the binder. I spent the first 45 minutes of the ARD listening to the contracted AAC evaluator explain the reasoning behind the low tech, mid tech, and high tech devices. She asked me as we went if I had any questions, to which I replied no, because I didn't want to jump ahead of the meeting. I wanted to hear her out. But, she left before we had the "official" writing in the IEP. When it came time to address the things that were most important to me (i.e. timeline of implementing devices, who was responsible for what, who would do training on programming and be responsible for obtaining the devices, etc...) It came down to the last five minutes. My sweet girl was out of school, and it was time to go. I left frustrated. And confused.
Fortunately, we have a great team, and my evening ended with a few text messages and phone calls that put me more at ease.
But I still have some concerns. First off, even though it was referred to as "training" Kendall using an eye gaze system with two objects really backs us up. She's been doing that for almost 2 years. That's the reason we started the iPad. She was past making a choice of two objects. She's ready for voice output. The idea is that we will "train" not "test" her doing that on her low tech device. But there was confusion after the AAC evaluator left as to whether or not that meant we needed to wait on demoing the high tech device. I was under the impression these devices would be used in unison. The person who thought we were supposed to wait on it is the same person who I thought would be responsible for continuing the recommendation and obtaining the device. Obviously there was a communication breakdown. Thankfully, we have a few people on our team who aren't afraid to utilize their resources, and we are reaching out to another SP at a different school, and will get assistance from our Education Service Center to make sure we have what we need to move forward. Those who work regularly with Kendall know what she's capable of, and won't drag their feet in getting the devices.
I woke up in the middle of the night thinking about everything again. If backing Kendall up for a few weeks gives us the opportunity to get everyone on the same page, with the same pictures and placements, it might not be bad. If we can start off simple with something easy to be consistent with, hopefully we will have more success.
I understand the statistics on AAC device failure. I recognize that giving someone too much too soon can result in frustrations and shutting down. But I also know my daughter. If we don't up the ante fast enough, she will most definitely lose interest and shut down.
I'm prepared for this to be a roller coaster ride. But I'm also committed to slowing down and making sure we get the right device. Because Kendall has so many people working with her (and I really wouldn't have it any other way) we all need to be consistent for this to work. That is why I believe training is the most important piece to this puzzle. We can't just assume that people with the background in education understand it, or have the same philosophy. Training in my opinion is crucial. And it's also the thing we didn't address yesterday.
I feel so moody when it comes to Kendall. I go through phases of anger and resentment too. I remember getting her g-button and sobbing my eyes out because I had to make a decision on an alternative to feed my daughter. Feeding. One of the basic needs a mother meets for her child. I couldn't do it. Now I have the same feeling. Talking....expressing herself... it should be a basic thing. And I'm really pissed that it has to be this dang complicated.
Thought I'd share the latest video of Kendall listening to Kamden play guitar. Everybody loves a little Old Crow Medicine Show :) (pause the blog music at the bottom!) .
Around 3:05 Kendall notices the camera. And my girl loves the camera!
Kamden turned eleven on Sunday while I was gone. We will be celebrating his birthday this Saturday with a few friends at Six Flags. The boys are convinced they will be able to see part of the World Series from the top of one of the roller coasters, since the ballpark is right next door! I'm not so sure, but they are still super excited
We go to ARD on Monday to review her AAC evaluation and set up the game plan. I'm bursting at the seams I'm so excited!
I often wonder if I will ever feel like we are doing everything we need to be for Kendall. I feel like I have given her my all. But with a child like Kendall, there are soooo many things to consider. I have to prioritize too. If we are focusing one hundred percent on getting rid of seizures, or controlling blood sugars, or monitoring vitamin supplements and nutrition, it leaves little time to enjoy the everyday. But those things are the most important, as they keep her alive, thriving, and out of the hospital! It is very time consuming.
I'd like her to stop relying on her g-button for feeds, but if we rely on her to eat orally for every meal, it takes FOREVER! She also fatigues quickly, and doesn't enjoy being pressured to finish a plate of food.
Encouraging Kendall to make her own choices, or make a request on her communication device before we start an activity, or eat something, sounds great in theory, but there are only so many hours in the day. We have loads and loads of appointments to get to, and school four days a week. We don't have a lot of down time.
I also enjoy spending mommy time with her. Cuddling, rocking, singing songs and just being. I don't always want to do joint compressions, or therapy, or make her use her left hand.
I think as a family, we have a pretty good balance. Justin jumps in when I'm over it, and I do the same for him. We have great support with grand parents, and Kamden knows how to do it all too! And without our nurses, oh, I can't even think of life without our nurses.
But it gets overwhelming sometimes.
This past weekend, as part of my Anatomy and Functions of the Visual Systems class, I spent the weekend in Lubbock. I felt like I was on the edge of my seat the entire time. Everything we are learning is so important to me. I am personally and professionally vested in this program. We dissected a cow's eye ball, and I didn't throw up! We watched videos of teachers working with kids just like Kendall and began learning how to do a Functional Vision and Learning Media Assessment. We had a Low Vision Specialist review eye conditions and present a lot of the new low vision devices. The Texas Department of Assistive and Rehabilitative Services presented their programs to our class. We had a deafblind lunch experience by wearing blindfolds and earplugs and relying solely on our other senses to make it through our lunch. (this was the most amazing experience for me, as I now understand why Kendall doesn't like it when someone makes her put her hand on something...) And the whole power point on Cortical Vision Impairment was of course near and dear to my heart! Just when you think you know everything about it, you realize you've only touched the surface of the complicated relation between the brain and everything else!
I left with my wheels spinning. But I also left thinking I should be doing more for Kendall. We should be assisting her with her vision more than we are. Our Dr. should have presented us with other options for contacts, and should have already referred us to a low vision specialist. Kendall needs more magnification because her lenses are gone, and she doesn't have inocular lens implants...diabetes will affect her whole body, including her eyes if we allow her blood sugars to fluctuate...the risk of Glaucoma with her high pressures isn't something our Dr. should be brushing off. My list can go on and on.
I also left feeling compelled to share everything I know. I'm often broken at the thought of families in the same position who don't have the same resources we do. Adjusting to your "new normal" as people ("experts") are throwing their opinions and suggestions on you, and constantly saying you aren't following through like you should can be devastating to a mom who just yearns for her child to interact with her. Families who have teachers that are quick to blame the parents for not following through or who give up too soon. Or my favorite, when teachers say a mom is in denial because she still expects great things out of her child with multiple disabilities. (I'm a fan of the "Least Dangerous Assumption") And then you have the kids who don't have anybody fighting for them. I wish I could fix the world.
It was very emotional and exhausting weekend, but I feel charged to keep going. I may putter through this one class at a time. I may or may not go back to work anytime soon. But I'm learning things that will help my sweet girl, and others along the way. I just wish I had more time for everything!
And then I see this sweet face. We could all learn from the simplicity of her mind. She's happy when she's happy. She doesn't hide it when she's sad. She expects the best out of everyone, and deserves the same in return.
My friend Jennifer Jordan shared this video today on facebook. I found it comical yet spot on in relation to what some of my close friends are going through. We're just starting this journey with Kendall. Just now in the throws of putting things in action. Everyday I am so thankful for the technology our sweet girl has at her fingertips. But I also know it will require more than just funds for the device and it written into her IEP. It will require everyone, EVERYONE in her life to embrace it too. But I feel optimistic today.
As a follow up to the last blog post...I'm still not sure what action to take. Taking Kamden out of her class isn't the message I want to send to him. I do want to take it to administration, and possibly suggest sensitivity training, but I doubt that will help much. It will be just one more thing the teachers have to add to their plate. She's someones mother, wife, friend, and has been teaching for over 20 years....I don't want to destroy her. Thanks for all of your supportive comments. Honestly, as I wrote it, I thought people may think "here she goes again!!!" But it is nice to know my thoughts aren't that far from the rest of the world (or at least those who read my blog!)
People like her aren't going to go away. If she hasn't gotten it yet, it's because she's not receptive to learning it. I'm sure eventually I will come to peace with the fact that not everyone does.
It's been a while since I've used my blog as a venting platform. But for my sake, today is going to be one of those days. This is a story I have to get out, get down in writing, and move on. It will destroy me if I dwell on it.
I went to a conference today with Kamden's writing teacher. He received a high A in the class, so I didn't schedule it to discuss grades. Instead, there have been quite a few instances where Kamden's complained about this teacher. She's grabbed his shoulder, yelled at him, refuses to call him by the name Kamden, since it's his middle name...the list goes on and on. Typical student reports about a teacher who is maybe a little older, and not quite as fun as all the others. Kamden's a 5th grade boy. I'm not at all naive enough to believe every story he's told me isn't embellished, or one sided.
He recently told me a story about him making a noise in the hall and the teacher calling him out and asking him "are you mentally disabled?!" "no, you are not. stop making that noise!"
You can imagine my reaction to this story. I'm pretty sure I gasped and left my mouth hanging open.
I decided it was definitely time to step in. First off, I'm usually pro-teacher. I never let Kamden think I'm not on the teacher's side. But I'm also not a fan of teachers who yell at students, teachers who say "shut up" or teachers who belittle students in front of other students.
You can also imagine, I'm DEFINITELY not a fan of teachers who would make a comment like this.
So, today I went in to hear her side of the story. Yep, her side of the story was exactly the same as Kamden's. Exactly. Except she proceeded to tell me he was trying to make a bird noise and it sounded like, you know, he was one of those kids who is mentally disabled.
To say I was shocked is an understatement. My whole body started to shake. My eyes welled up, I could barely talk. Clearly I take this personally, but it is so much more than that. I told her that Kamden had a sister with disabilities. She asked what (not sure why the crap it mattered) Then said, well, I said mentally disabled. Not mentally retarded,so I was politically correct. This woman seriously said this. Looked me right in the eye, and completely missed the point.
I sort of explained where I was coming from, and she said something like, "well I know he's not, so it wasn't like I was making fun of him." Seriously. Still missing the whole entire point!
What do you do? I usually think on my feet pretty well, but today I completely shut down. She's older. She's almost ready to retire. She's upset with the district. She's unhappy with the direction things are going. She's not adapting to the changes well. She's completely ignorant. Could I have changed her thinking?
My guess is probably not. But I'd like to think my reaction maybe will make her think before she speaks next time. Probably not though.
The heart wrenching thing is this: Kendall will be going to that school. If they haven't changed their perceptions by then, we are in big, big trouble. Kids are led by example. Some days I think Kendall really is changing people. She's changed our family and friends for the better.
It makes my brain crazy to think that people say things like this. People may even say things like this behind our back. But to say it openly in front of a whole group of kids, and then defend what you said...makes me realize this battle hasn't even begun.
I wish I was the type of person who could look the other way and not worry about it. But I can't. That's not in my genetic make up!
The R word battle is exhausting. Fighting and defending people who don't always have the means to defend themselves has been laid on my heart. Not by choice. But it has. I can't turn my back on that. I've wanted to, but I can't. I owe it to my children to keep fighting, right? Whatever.
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)