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!!)
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:
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 :)