Speechless!

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.

AAC Evaluation

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!

Stepping Out of My Comfort Zone

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!!)

Genius

"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

New Chair and School Pics!

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: