December has been a crazy month for us! I worked really hard to go into the kid's Christmas break from school with plenty of time to do fun activities, go fun places, and spend lots of quality time together around the house baking, crafting, watching movies...
But as usual, things didn't go as I planned.
We have been in the emergency room with Kendall, to the pediatrician with Kendall, to the pediatrician with Kamden, and an emergency visit to a specialist for him.
But we aren't complaining! We are in the comfort of our home, and have avoided being admitted to the hospital so far! Hopefully it will continue through at least the next few days. Then, maybe, just maybe, we will catch a break!
It hasn't all been bad, just filled with worry. We had a great early Christmas with Kendall's Nonnie, Poppie, and Aunt Val, and will be spending Christmas Eve with my family and my sister's family tonight. Christmas morning will be at our house, and despite illness, both my kids continue to have smiles on their faces! I just may need a vacation when it's all over :)
Our break has looked more like this: (instead of the Pinterest Christmas I envisioned! But, that's our life, and we'll count our blessings :)
(I had to snap this picture of all Kendall's meds and equipment...with my meds in the background :)
Our nursing agency had their annual Christmas party last week. Santa made an appearance and Kendall was intrigued. It was a great night for our family. Kendall ate lots of pie, and Kamden enjoyed dancing with his sister and making new friends! Santa got Kendall a sweet gift and our nursing agency, Vivicare Health Partners, donated to the Ronald McDonald fund in Kendall's name. They also set up a scholarship fund for a special needs camp in our area. We are so blessed to receive services through them. They truly go above and beyond everyday for Kendall...and all their kids. And we are so grateful for our amazing nurses. (and with our current state of affairs in Texas...we don't take those services for granted....as they can go away at any time!)
We're gearing up for the holiday break. We have lots of parties scheduled for the kids next week, and are looking forward to a nice, relaxing, break with our friends and family.
I'm finished with school until January! woooohoooo!
Kamden performed his Christmas song on Saturday night. His ability to compose music from scratch completely blows me away. He is always walking around this house with that guitar thrown over his shoulder. Music is his release. If he gets mad you can find him angrily strumming away in his room. When he's happy, he's jumping around the living room playing like a little rock star.
And the bond he and his sister share through music is pretty amazing. At the end of Kamden's song Saturday, she started crying because it was over :)
It was a great night. My kids make me proud everyday!
I thought I'd share a few pictures of my babies....and of course a video of Kamden's original Christmas song :)
I'll attach the words too. In my opinion, the kid's got talent :) Kendall agrees.
It was a very very still night.
The day their son was born.
Just one big star shining so bright, early that first Christmas morn.
But how were they to know, it'd be such a special day?
Mary's tears started to flow, while Joseph began to pray.
And the angels sang: Hallelujah.
And the sinners sang: Praise be to God.
And the wise men sang: Jesus Christ is born.
It's a really simple message you see.
Based on that birth long ago.
His life will set us free.
As sinner's we need to know.
Our Lord sent his son to die.
So we can forever live.
He's such a gracious God.
Us sinners he will forgive.
And the angels sing: Hallelujah
And the sinners sing: Praise be to God
And the wise men sing: Jesus Christ is born.
I definitely dropped the ball on a heart-felt Thanksgiving post this year. We certainly do have a lot to be thankful for though!
These past few weeks have been super, crazy, busy. Without nursing, my head has been spinning trying to juggle my family, home, school, and my first APA style research paper. Of course the usual holiday break in routine has thrown everything off.
We had a beautiful Thanksgiving at Kendall's Nonnie's house. The food and family company was awesome. Kendall's Uncle Josh (Justin's brother) had a successful move from Kansas to Dallas, with Aunt Val soon to follow. Kendall has really enjoyed all the people around and good food...especially the good food. And Kamden and I are over-the-top excited about our upcoming Christmas break from school! Kendall on the other hand has really missed school, so she may be bummed when there's another break.
Aunt Kristin getting love from Kendall
Kendall Ann catching up on current events with Poppy...or, um, truck shopping.
In other news, Justin's truck was never found. Big surprise. So, he's knee deep in shopping for a new truck. And pretty excited about it. Kendall and I are excited about shopping for a new car seat. I think we've decided on the Britax Marathon that goes up to 70 pounds. I think it is the same model as the special needs one they sell (just a little smaller and a fraction of the cost.)
We recently ordered a Sleep Safe Bed too. I'm sure it will take a little longer for insurance/Medicaid approval, but maybe 2012 will be the year Kendall starts sleeping in her own bed. Maybe!
Sometimes it's hard to see the progress Kendall's making when you're around her everyday. People who don't see her often tell me how far she's come (or how much her hair has grown!) I try very hard to appreciate every "inch" stone she makes. I think as a family we do a pretty good job of that.
I stopped asking to read her goals the therapists write, or the notes from their visits. But I do remember not long ago talking to her OT about holding crayons and markers at school. I really never thought I'd see that...I'm sure that sounds horrible....but I'm realistic. When she mentioned working on better form with holding a writing utensil, I thought her goals were a little unrealistic.
But today I was able to snap a shot of what we've been seeing from Kendall since the beginning of school.
Not only is she holding the pen...she's also using her left hand to stabilize the Glow Doodle. And she concentrates really hard while doing so!
Kendall ended up having strep and starting another antibiotic she had an allergic reaction to. Hopefully the one we switched to (from Omnicef to Clindamycin) will do the trick. When you have a miserable, coughing, not sleeping, not eating child who ends up covered in hives, it makes for a long week.
Oh, and while I'm complaining, I should also add my husband's truck was STOLEN out of our driveway early Tuesday morning. Apparently there has been a large number of trucks stolen in our town. They never turn back up. We were told it's probably already been stripped and in Mexico somewhere by now. They've put together a task force, but it doesn't seem to be working...Anyway, that resulted in a very bad day yesterday.
We did go to the Neurologist yesterday. It was our very best visit yet. He thinks Kendall is doing awesome, and isn't even sure if what we are seeing weekly are seizures. They may just be myoclonic jerks that don't let up. We plan to take another video and send it to him. Of course, based on her previous EEG's, we will never be in the clear when it comes to seizures. We get that, but definitely welcomed some good news. She showed off pretty good in his office too, despite being covered in hives.
I attended a meeting at Cook Children's Hospital last week for a Family Advisory Council that I may (or may not!) be a part of. While there, a child life specialist I was talking to shared with me a few cool things I wish I had known about sooner. Both are great resources for families of chronically ill, or disabled children. They would be great for ECI, therapists, and teachers to forward to their patient families as well...
The first is offered at our hospital and Kamden is attending this weekend. He's read about them before, in the book "Views From our Shoes" but we were unable to locate a local group. I think this is new to the hospital, and we were very fortunate to have someone pass it on to us...
The second thing is Texas Parent to Parent. They offer respite care and education to families in Texas. The back story is pretty cool, and they offer a ton of parent support. Check out the website if you're interested:
Honestly, I can't be upset. She hasn't been sick since school started (and this is the end of the second six weeks.) That's over twelve weeks of not even a runny nose. Pretty good for a kid who may or may not have a mitochondrial disorder :) I'd say her immune system is holding up just fine!
Another thing to celebrate is that this is the first September/October IN HER LIFE that we haven't been admitted to the hospital! I'm thrilled with that!
Today though, her oxygen saturation has been in the low 90's, she's lethargic and irritable. We began breathing treatments to help her have a more productive cough. But when you don't move around a bunch and have low tone, that gunk tends to just sit around her lungs. Pneumonia is definitely not our friend, so we'd like to nip that in the bud now.
She hasn't had a fever, but is having a hard time sleeping. That darn drainage and irritating cough keeps getting in the way.
She'll be better soon. I'm sure of it.
We go to our 3 month visit with our Epileptologist tomorrow. I'm a little frightened he's going to suggest another medication since she's still averaging one seizure a week. I don't want to add anything else that could take her personality away again. It's such a juggling act. Seizures do damage, but meds seem just as bad. Yuck. And I hate making the final decision on these things.
We saw the ophthalmologist last week. He wants to do another examination under anesthesia in February. It seems like we just had that done, but I'll follow directions. For my class I've been looking at eye reports and interpreting them. So, for kicks, I pulled out Kendall's state eye exam from her first ARD. They couldn't test her acuity at the Dr.'s office, so he reported her as legally blind....and her only vision was BTL. It took me all day before I figured out that means "blinks to light." All I can say is WOW. Just WOW. We've come such a long way.
In other news, our sweet friend Holly took pictures of the kids at the park a few weeks ago. I think this little series completely captures the strong bond my babies have. I'm grateful Kamden is such a loving brother. He would do anything for his sister. She adores him in return. Take a look :)
The past few weeks, since Kendall's initial Augmentative and Alternative Communcation Evaluation, my mind has been racing.
Seriously, just ask her teaching team.
I wake up in the middle of the night and send e-mails. I think about it constantly. I can't help but feel so elated and hopeful for her future.
Let me back up...
Kendall has been hugely frustrating to me lately. She says no to absolutely everything. Well, she says uh-uh and shakes her head.
We've initiated her low tech device at home. She's way past it. She looks at me and grits her teeth and sighs when I ask her to make a choice between two objects.
It is so very clear that she has something to say and gets seriously upset when we can't understand.
On Tuesday night, when she was awake for 3 hours in the middle of the night screaming, and shaking her head from side to side, I decided enough was enough. No more me being patient, no more me not wanting to step on toes. My job is to make sure my daughter gets what she needs when she needs it. My dream for my "special" child is no different from any other parent's. I want her to be happy, healthy, and her own person. For her to have original thought and stand strong in her convictions. And communication is the MOST IMPORTANT stepping stone toward that dream.
Our private SLP attended a seminar in PA. a few weeks ago. She invited Holly, Angie (Kendall's nurse) and I over for a movie night last Wednesday. The featured program was this documentary: (this is the trailer)
It couldn't have come at a more perfect time. After reading the book mentioned in the previous post, her AAC evaluation, and the newly initiated plan in her IEP, I finally had some clarity. Kendall's life doesn't have to consist of a yes or no guessing game. There is a possibility of her gaining independence, graduating from high school, going to college, and choosing a job that she wants to do.
I'm sure some of you, especially those in education, may think I'm a little premature in this thinking. Three and a half is early for a high tech communication system. At least it has been early. But today kids are using cell phones, iPads, iTouches, etc... before they're two. There wasn't any mention of the timeline for these people featured in the video. But honestly, I don't want to know. The truth is, we live in a time where technology is available and quite amazing. Doors are opened for our kids that were closed before.
My goal is for Kendall to have an established communication system (after this documentary, PRC with MinSpeak is a front runner) before Kindergarten. I know it will require a lot of work, but I know we can do it.
Last week I went to a school district nearby to observe a Functional Vision and Learning Media Assesment. I entered a Resouce classroom where the children were sitting at tables doing absolutely NOTHING. Seriously, sitting there staring into space. And this wasn't a Life Skills class. This was a Resource class. But either way, it was sickening. Obviously, I wasn't in a position to judge or comment, but it really ressonated with me. If nothing else, it made me decide that there is absolutely NO WAY IN HELL my daugher will be sitting in a classroom wasting away because some teacher doesn't think she understands or can express herself.
Times are changing, and I fully intend on making sure Kendall benefits from those changes.
The full documentary is actually on YouTube. I've embedded it below. It's a little over an hour, but so worth the time. At 42:50, they mention that some would call these people "savants" but go on to say that the reality is that at some time, someone determined that they get a device that would enable them to be spontanious and interactive. (something like that)
My promise to my girl is that we find the device ASAP which will allow her to have a voice and continue her education fully mainstreamed (with support.)
And by the way, I'm not afraid to step on any toes in the process. Those who have the opportunity to get to know and talk to Kendall Ann will be better pople for it. She's going to change lives. Guaranteed.
I wanted to share a book my mother in law sent over on Sunday. A friend recommended it several months back, and I had to pass it on. It should be a required read in all schools in my opinion. Although it is fiction, the author certainly did her research! I felt like I was reading about my sweet girl from her perspective throughout the whole thing!
I also wanted to share a cute picture Holly took of the girls trick or treating last night. Kendall is clearly trying to snag Caleigh's candy bucket!
This week is crazy busy for my kiddos. My children seriously have more of a social life than I ever have! But busy is good.
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.
It's clear to everyone involved with Kendall that the area of most frustration for her is her inability to communicate. She nods yes and no, and will sign all done, eat, and wave hello and goodbye. She also has an expression where she pulls her fists together, grits her teeth, and shakes her head from side to side quickly when you guess what she wants incorrectly. Its very cute and very sad at the same time.
At our initial ARD (known other places as an IEP meeting) I requested an Augmentative and Alternative Communication evaluation. They needed to observe Kendall in the classroom with her teachers and other students in order to get a clear idea of what she needs for communication. It was also important that we address the way in which she will access the device, and set it up correctly so she can have independence and ownership of it from the beginning.
Yesterday I spent a few hours at the school for the final phase of Kendall's AAC/AT evaluation. The evaluator is contracted by our school district and brought a wealth of experience, suggestions, and knowledge to the meeting.
For the first time, I finally feel like I have a good understanding of the process. We will go back to ARD in a few weeks to get everything from the final report added to her IEP.
For those of you interested, and to bullet point this for my own future reference, here are a few highlights of what I learned yesterday.
*Kendall obviously will need an AAC device *More than likely, we will go with an eye gaze system *The district will purchase the device, and Kendall is allowed to sign it out, and take it home. *This device will be her voice. The use of it will be her idea. She will explore language the way typically developing kids do. We will not tell her to "touch the button" or "make it talk." But we will use open ended questions and encourage her to do it on her own, and in her own time. *Her IEP will include an action plan for training, and implementation of the device for our family and teachers/therapists. *We will demo as many devices as we decide in the upcoming months, but will have a low tech communication system/ipad in place as we decide which one is best.
I've known from the beginning that the ipad wouldn't be the end all be all for Kendall's communication. We use it for games and stories. She needs a device that is just for communication and can be easily mounted in different areas. She needs a device that is able to do a few more things to accommodate her dystonia and work effectively. The ipad was a great start for us. Mostly for me to gain an understanding of how programming works, and discover what Kendall is capable of in her motor planning.
The biggest aha moment I had at the meeting was that everything we are doing now, is preparing her for bigger and better things. First, she will start out with one word symbols. We will build on her "language" as we go. When she gets to the point where we are ready to add verbs and adjectives, we will. So, just as a typically developing child gains language and literacy through every-day experiences and social interaction, so will Kendall. In the future, building on these things will enable her to gain reading and writing skills expressively too.
I'm sort of excited for a fresh start. Between our outside therapist, and the school team, I'm certain we will pick the best device for Kendall and make a plan. I think the iPad opened the door for a lot of things for her. She has already mastered one word phrases, and we've included a lot of buttons that have sentences, etc...and I think she understands this. I'm excited for her to create her own, and express her own thoughts independently.
SO, this was a huge development in our world. I'm excited to see how this year pans out. The first six weeks of school is wrapping up...and I feel like we've already accomplished a ton!
It's true, change is scary. But it's also good. For me, there's been a lot of change lately. When Kendall's therapist decided to stay home with her kids, it rocked my world. The thought of getting a new therapist made my stomach turn. What if she underestimates Kendall? What if she doesn't like the choices we've made on equipment? What if Kendall doesn't like her? What if I don't like her?!?
With all these questions in our heads Friday, we headed out for our first therapy appointment. Our new therapist has a ton of experience. (she's also not really new to us, as she was our first therapist outside of ECI when K was 5 months old.) I talked it up with Kendall, and decided we were going to call the center her "gym." She was all smiles and giggles in the car, excited to be going someplace new.
The first 30 minutes of therapy went well. The therapist made a few adjustments to her chair, and gave some suggestions about her chest harness and pommel. She assured me Kendall's hip sockets are good and attributed it to all the standing time Kendall has at home. She also gave a lot of suggestions about a "movement plan" for school, to make sure Kendall is not in the same position all day. Our nurse and team at school are already doing that, so no worries there! We also had a nice discussion about the relationship between movement and language, and will be incorporating a few different commands throughout the day. Sort of things we already do, but requiring Kendall to be more of a participant. Basically, being more patient!
The exciting part about the first 30 minutes was that Kendall was sitting unassisted/with little assistance on the mat looking around and with amazing head control.
Then, when we attempted to have Kendall show off her rolling, she lost it. Pulling hair and screaming for about 15 minutes. I really had to bite my tongue. I wanted to just pick her up and change positions and activities for her. She would have stopped crying if we did, but I wanted to follow the therapist's lead. So I sat on my hands. Eventually Kendall stopped crying. And she ended up having a great session.
I feel like I'm making strides in letting go. I hardly worry about her at school anymore, and am getting better at trusting others. I also think the more Kendall's exposed to new and different environments, the more she's soaking in too! I believe that since she eats lunch with the other kids at school, she's now starting to self feed. She used to only eat play doh herself, but now, she's held and taken to her mouth, sandwiches, apples, strawberries, the smushy applesauce in a bag thing, and cookies. Every morning she sits in her chair for about an hour playing and eating breakfast. That's the independence I've longed for for her for about 2 and a half years! Kendall's doing things in her own time.
I'm also knee deep in my eye anatomy class. I'm so not a science person. Never wanted to be...so it is a very big challenge. So far so good. I'm learning a ton. Yesterday I went to a Braille Literacy class at our Education Service Center. Spending time with other teachers (some who still have a passion for it, and some who do not) was also out of my comfort zone. I haven't been to a teacher training class in over 7 years. I was also reminded of how different everyone is! Of course, that's a good thing. All kids are different, so it's good to have different influences on them. But seriously, teachers have a very difficult time staying on topic. I need to work on my patience with that!
My state braille exam is Saturday, so I will also be studying for that all week. Thank goodness I'm able to loosen the reigns with Kendall a little. My brain couldn't take much more right now!
Things are good. We're anxious for this hot weather to go away and all that lies ahead for fall. (except losing daddy to football and hunting!!)
"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid." ~Albert Einstein
Things are going really well for our sweet girl right now. With the exception of some dangerously low blood sugars (which I blame on extra activity) she's been happy and healthy these past two weeks of school.
Last Friday we received Kendall's new manual chair. It is a Tripod LT. We still have to do a few tweaks, but she looks pretty good in it. It is heavier than her KidKart, but I like that it doesn't recline, or give her the option to not have to work on holding her head up. It keeps us all honest.
School is amazing. She loves her teachers and squeals every time we talk about going. She's also quite the social butterfly. Today when I pulled up to drop her off, the line of afternoon pre-schoolers were yelling her name and saying hello before we could even unload from the van. Kendall was beaming, I was beaming, and our nurse Angie was too!!
I'm so glad to have a team working with Kendall that shares my vision for her. She's happy, making friends, and being herself.
It's not all fun and games though. They are making her work. Hard. She tends to do more for others than she does for Justin and I. I guess that's typical 3 year old behavior. Yesterday was a landmark day for her. She took 6 steps in her walker down the hall from her classroom to her motor lab. I know she resisted, but they wouldn't let her give up. Everyone believes she can do more than she's letting on. She also put a puzzle piece in a peg puzzle. She's consitently coloring with crayons now everyday. She'll pick them up on her own and start drawing.
I'm expecting great things from Miss Kendall this year. I'm sure she's going to surprise everyone!
Of course, summer is still in full force in Texas. With our afternoons still hitting 100+ degrees, there's still loads of time for afternoon/evening swims:
I've totally dropped the ball on sharing our amazing vacation. Life takes over sometimes...but I definitely want to document the trip with a few pictures, and a quick video! My babies are such beach bums!
This first video was taken the day we arrived in Destin. After a long over-night drive (and a detour since I entered the airport shuttle driver's address in instead of our rental...long, long story, but made for some good laughs!) Kendall didn't waste any time at all getting used to the water, sand, and sounds. She enjoyed it immediately!
We decided last minute to take some family pictures on the beach! I'm sure that was a comical sight for onlookers.
I wanted to take more pictures on the beach with Kendall, but stressed out way too much with my camera and phone being in the sand. I'm the one with the sensory issues when it comes to sand and salt water.
I want to give a huge thanks to my sister Kristin for a wonderful, amazing, and memorable trip. She paid for my whole crew to stay in a beautiful condo for a week. Our amazing nurse, Angie, came too. She won't let me post any pictures of her...but I did sneak one in at the top of her with the rest of our family! Having her there allowed me to spend some time with Kamden doing fun things...and gave me some much needed alone time on the beach!
Two years ago when we went to Destin we were in a really bad place. Kendall was seizure free on the Ketogenic Diet, but we had multiple challenges that we would face the week we got home. My mom was just about to undergo her long battle with Cancer and Hep C. I was in the throws of deciding whether or not to quit my job. Kamden was always so worried about his sister that he would cry himself to sleep. Needless to say, we have come a very, very long way. This trip was a celebration of life. Next year, we hope to be able to take everyone again. Maybe with enough notice, our husbands will be able to take off work and join in the fun! I love our family, and am blessed to truly enjoy their company the way I do. Our family game nights were a hoot!
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!
music together
more music please!
clearly before keto diet and diabetes
About Kendall...
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 :)
Posts
