Jun 18, 2016

School's Out For Summer! I wish.

Having 3 kids in 3 schools can be difficult to manage and by the end of the 2015-16 school year it became overwhelming. Ainsley had her annual IEP meeting scheduled and I advocated for a literacy program with phonics geared toward non-verbal AAC learners (on the recommendation of an AAC specialist and yes programs like this do exist) as well as increased AAC support and training (it's a specialty). In addition we implemented a new AAC system. I lost, but the fight advocating isn't over. Things were going on at Adrian's school and I ended up being elected onto the PTSA board as well as needing to tie up loose ends as Photography Chair for the year (which is still not done). Evie despite doing well first Semester had a particularly bad grade and missing work that needed attention and I had to get her some help since High School Grades are for keeps. It was like I'd wandered into the Bermuda Triangle of education and was sucked in.

Looking back I'm sure as a child I had Inattentive Type ADHD, I really struggled to complete tasks and am easily distracted by new ideas and thoughts or external stimuli and still am. Managing my time has always been a struggle. I wish that someone had helped me because I could have done a lot better in school with more support. Because of my experience it's really important to me that my children do well in school. I want them to have the best opportunities to do what they want in life and a good education is the foundation.

Most people fully understand this for my two neuro-typical children but I want this for Ainsley as well.  People with Intellectual Disabilities (ID) have historically been underestimated. It wasn't that long ago that people with ID were not permitted to go to school and parents were fighting simply for the right of their children just to be allowed to go to school. In 1973 FAPE happened and things began to change, you get the IDEA. Although things have improved there is still a great degree of difficulty in teaching, assessing and serving the needs of non-verbal students. This is something that I want to see change. The better an education a person with ID receives the more they will have to contribute to society. We must aim high not low.

I personally believe that all non-verbal students should be taught to use AAC devices as young as possible. In early special education this is a lot of students. I believe that some of the behavioral problems we see are related to a child's frustration with being unable to express him/herself. Imagine having no way to express your thoughts feelings or desire and the loss of control that would come with that. In addition when a child has no way to express what they know or inquire about what is going on around them they lose lots of opportunities to learn along the way, every single day. That can lead to a compounded affect as well as holes in their learning.  I could write more on this idea but Emma, a non-verbal young woman with Autism did that so well here in this article.

When Ainsley was very young I believed that she would speak. She had a tracheostomy which impacts the ability to vocalize because of the redirection of air flow. What took me some years to figure out is that her brain condition, Cerebellar Hypoplasia, affects the bodily capability to make speech. (Though many CH patients do learn to speak but may be difficult to understand.)  The Birth To Three School started her on PECS cards when she was still 1, we moved to a switch and then later a simple Go Talk device before they provided a Vantage and full support with a specially trained SLP when she moved into the Seattle School District at age 3. She steadily made progress with each new system. Later an IPad with TouchChat when we moved to Redmond, then a NovaChat dedicated device in 2012. Along with Ainsley I learned. I took on some of the programming and eventually did all required customization for the school when our insurance bought the NovaChat.

We had been previously teaching Ainsley some sign language which was also difficult for her because of her challenges with motor skills. For years she'd been signing "all done" with a single hand because a nurse(T) taught her that way, and we thought maybe she was stimming (though she doesn't have autism). Poor kid. Having a child that is non-verbal is difficult. We play a lot of guessing games and fill in the blanks. Really she is quite patient with us typical learners who don't always recognize what she tries to communicate to us non-verbally.  Back then, in addition to speech/vocalization/AAC/ASL we had feeding issues, a trach to care for, surgeries, OT, PT and educational goals.  We did our best to juggle all these but I know that if we'd had a better plan Ainsley would be much further along in her ability to use AAC. There is no doubt in my mind that the ability to communicate more complex ideas with AAC would also equate to greater learning and abilities. Who knows what she would be doing right now if she had been taught to fully communicate with AAC years ago. 

Luckily in 2014 an SLP specializing in AAC (from an on-line support group) was determined to convince me that Ainsley should be using a word based system instead of phrases. I thought the buttons would be too small and the number of words would be overwhelming, especially considering her use of the current phrase based AAC system was minimal. I thought she wasn't ready.  Then I learned that things had changed in the world of AAC and word based systems were recommended by SLPs Specialists for nearly all AAC users because when the user learns these systems they can communicate for a much larger variety of purposes and say things that are important to them. A limited phrase based system can only be used for limited communication.

Even with a robust word based system often well intentioned adults ask AAC users to say things that are not motivating and obvious like: The dog is brown. The girl is happy. or I am hungry (when they may not be). Using AAC takes time. It takes a lot of effort for a child with physical disabilities who cannot read to find and push the buttons. The child has to feel that it is worth their effort, that is human nature. That means we need to believe learning AAC is worth the effort and prove it by leading by example. If the neuro-typical adults find AAC too difficult and time consuming to use for simple sentences, how can we possibly expect it of an Intellectually Disabled child who can't read, who has to teach herself?

Having a good AAC system (hardware and vocabulary) is just the beginning. Then, like any other language it takes exposure and practice. Lots of it. School is the ideal place to use AAC. It is a content rich environment with opportunities for meaningful AAC use all day long. Specialists in the field of AAC know this is critical. My hope is that I can get the school district, school and staff to understand the importance and that they will willingly step up to do their part with consistent modeling or Aided Language Input because they care about Ainsley's success as a student.

Unfortunately there is not a standard curriculum in special education nor agreed upon standards for teaching AAC across districts. The importance of the IEP cannot be overstated, particularly for the children with high needs. In isn't easy to teach literacy to a child who is non-verbal. It also isn't easy to use an AAC system when you can't read. We want to break this cycle and unlock Ainsley's world. Unfortunately I also learned this year that if all the details aren't spelled out it in the IEP it can lead to miscommunication which can have a negative effect on the relationship between parent and school.

We will be meeting with the school at the end of summer to try to get things sorted out. In the mean time I am going to be doing what I can to teach Ainsley both AAC and literacy skills myself while still trying to have a "fun summer". I see in my on-line support groups other moms doing similar things over the summer, creating a "summer home school program". I'm not alone. This is the way it is for families like ours. Summer is an opportunity for surgeries or catching up on skills. For us it's not all about fancy vacations. The far away destinations are walking, talking, reading, writing, eating etc. It was only a few summers ago I was on a mission to get Ainsley eating orally.  That was tough but it beat spending the summer (with the 2 other kids in tow) at the hospital in an intensive feeding program. That work paid off and these days she does so well eating. It was so hard-won that I still find myself watching her in amazement like I did on the first night of summer as she enjoyed her meal and then cake, a previously hated food.

As we sat at the dinner table she shrugged, her "sign" for "I have a question". I've been trying to use opportunities like these to direct her to ask a full sentence with AAC. I knew she'd heard us talking about how Evie and Daddy were in a rush to leave for Evie's vocal lesson. She pushed the button for mommy and I showed her (modeled) the sentence below and then verbally coached her through it the second time, and by the 3rd time she was able to do it by herself. The more we do this with her the faster she will learn. She loves being able to ask a question to get information. Just like everyone else.

The last day of school was our busdriver's last day. He's retiring and will be missed! We gave him the "Best Busdriver In the World" award (it's inscribed on the copper tag), a flower statue for his garden made from a recycled school bus. It happens that yellow is Ainsley's favorite color.
I hope he thinks of her when he sees it.

We made him a card. The drawing we did with hand over hand support and some verbal instruction. Last school year the school wasn't working on handwriting and had keyboarding goals instead. They bought her a stamp for her name instead of teaching her to write it. Despite the doctor agreeing with them that perhaps it was too difficult (which angered me since I'd seen how well she did tracing) I pushed for it in the IEP and asked for tracing homework. Look what she's been able to do with practice! See the name Gene? She copied that with no help. Her name she can write from memory now after writing it together on her homework every night using a model I made. And the rest of the writing she did with hand over hand support for letter positioning. 
I'm so proud and so is she! 


Don't you agree?!

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