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.
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 :)