The Reason I Jump

I'm reading a book, called "The Reason I Jump". I'm not going to go on and on about it, although I'd like to, so here is the excerpt from Amazon:

     You’ve never read a book like The Reason I Jump. Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within.
     Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. 

I just want to share a few of the questions and answers that I enjoyed reading. I think they speak for themselves.

Question 42: Why do you memorize train timetables and calendars?

Because it is fun! We get a real kick out of numbers, us people with autism. Numbers are fixed, unchanging things. The number 1 for example, is only ever, ever the number 1. That simplicity, that clearness, it's so comforting to us.

Whoever reads any given timetable or calendar, its always, always the same. You can easily understand all of them by following the same set of rules. And when it comes to our favorite things, we can memorize these as easily as if they were jumping straight into out heads. Invisible things, like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.

Perhaps you're thinking that its no major effort for me to write these sentences, but that wouldnt be true at all. Always lurking at the back of my mind is an anxiety about whether or not I'm perceiving thing as in the same way that people without autism do.  So, via TV, books and just tuning into people around me, I'm constantly learning about how ordinary people are supposed to feel in given situations. And whenever I learn something new, I write a short story dealing with the situation in question. This way, with luck, it wont slip my mind.

Question 36: Why do you like spinning?

Us people with autism often enjoy spinning ourselves around and around. We like spinning whatever object comes to hand for that matter. Can you understand what is so much fun about spinning?  Everyday scenery doesn't rotate, so things that do spin simply fascinate us. Just watching spinning things fills us with a sort of everlasting bliss - for the first time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there is something beautiful about that.

Question 23: What is the worst thing about having autism?

You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, "Minding these kids is really hard work you know!" but for us - who are always causing the problems and are useless at pretty much everything we try to do - you can't begin to imagine how miserable and sad we get.

Whenever we've done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It's impossible not to wonder why we were born into this world as human beings at all.

But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you're denying any value at all that our lives may have - and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships ok, but the though that our lives are the source of other people's unhappiness, that's plain unbearable.

Hopefully the last question will make you stop and think for a moment. I know I did.

New IEP, new goals...

So, just a brief reminder of what an IEP is.

IEP

An Individualized Education Program (IEP) is a written statement of the educational program designed to meet a child's individual needs. Every child who receives special education services must have an IEP.

Since Lauren is on the autism spectrum, has receptive/expressive language delays, and cognitive delays she will always have an IEP in place. They are individual goals written by her teacher, OT (occupational therapist), SLP (speech language pathologist), and APE teacher (adapted physical education). OTher children also have goals written by a PT (physical therapist), however, Lauren does not need physical therapy. They have to be measurable, and are broken down into benchmarks over the course of a year. 

Today was Lauren's IEP meeting for the 2014-2015 school year. I feel very grateful to work in an MD (multiple disabilities) classroom, as it has really helped me learn the school lingo and what to expect from our educators. Lauren's team always comes through with flying colors, and they really know what skills she needs to develop. For the past few years, our main goal is always to make progress on her expressive and receptive language. We are now putting a big focus on reading comprehension and "WH" questions. I have to admit, when I see terms like "severe cognitive delays", "significant discrepancy between receptive and expressive language abilities", "age equivalent scores", and "below age expectations", I get really bummed, and thats how I felt last night when I read the draft for her new IEP. 

Luckily, meeting with her team always makes me happy, as we discuss Lauren's wonderful and funny traits. They also ooh and ahhh over how much progress she is making. We have some great goals set in place for her, and we also have made a decision on an IPAD app to assist her with expanding her speech. We had used a Dynavox in the past, but we were highly disappointed with it's reliability. The cord and battery were constantly needing replaced, and at $150 bucks a pop for a $7500 Device (yes, $7500), it was crap. We are very excited with this new app, and luckily, it is half off tomorrow in celebration of Autism Awareness Day, so it will be $150.

All in all it was a productive day, and I left happy. One thing I have always wished though, is that people understood what time and effort are put into her IEP. I dont even think I've had anyone ask me what her specific goals are or how she is progressing with them, even though she has had an IEP in place for 6 years now. That might sound a little trite, but thats how I feel sometimes, like when people ask a broad, generalized question of "how is she doing?" I know that most people dont know what they should ask, and that it might be a very boring topic for them, but it's my life, and it will be my life forever. SHE will be my life forever, and I dont like to think that her progress doesnt deserve merit, even if its not "exciting". Ok, off my soap box, but parents who live with the IEP life know what I'm talking about.