The Teacher My Kids Deserve

I’ve been hemming and hawing about writing a post for the last few weeks, and truth be told, I’ve started a few and scrapped them. I’ve had more than one person tell me that a good blog is not necessarily about quantity, but about quality, so I’m always loath to write just because I feel I should, but rather prefer to wait for something to inspire me enough to write. Don’t get me wrong – there are amazing moments every day, but not always ones that carry enough oomph to get me to my computer after a long day of work, rehearsal, meetings and whatever else comes along... We’ve had some great and a lot of crappy in my room the last few weeks, a lot of which I can’t really blog about because it would involve venting heavily about other adults, and although managing adults is certainly a part of my job, it’s not what I consider the important part (that would be the kids!)

So here I was tonight, sitting in front of the computer and trying to will myself some inspiration, and along came Carly, once again.  I posted a video of Carly Fleischmann’s story last November as part of this post, but since then, Carly has been a constant source of inspiration for me every day.  I follow her on Facebook and Twitter, and it has been really fun in recent weeks to follow the excitement and hype of her newly-released book, Carly’sVoice. Her story is a constant reminder to me that my kids are in there, no matter how deeply their voices may be buried in their autism, and that they deserve every chance I can help give them to find their voices as she has.

Tonight, Carly was posting answers on Facebook to questions that readers had been asking her, and as I re-posted her answer to one of them, I suddenly got “the flash”... The post went as follows...

Carly Fleischmann

From Michele Johnson:
I have a 3yr old son diagnosed with autism last year. You are an inspiration and I admire you. I know everyone as a person is different but I wanted to ask you a question. At times when it seemed to others that you weren't aware of what was going on around you. Did you always feel the love and support of family? Was there one person that made you feel that they understood you. 

Carly’s answer: I think I was lucky to be surrounded by many people who made me felt loved. My dad always talked to me like I was listening even if he wasn’t sure if I was. My mom fought for me time after time for support and founding. I also had Barb and Howie that Just made me know that I couldn’t stop fighting and be the best me I could be.

And my comment, as I re-posted it, was “Love this answer from Carly! A good reminder to always strive to be the person my kids deserve...”

The person my kids deserve... that’s what I’ve really been struggling with these last few weeks. How do I juggle the paperwork, the politics, the people management and my own lack of knowledge and background in all things ASD, and still manage to be the person my kids deserve – the person, who, in Carly’s words, makes them feel loved, supported and lets them know that they can’t stop fighting to be the best them they can be? Now, let me be clear – my kids are loved at home. They are all blessed with loving, hardworking families who do their very best to support them as best they know how, and who support what I do in the classroom as much as they can. But they’re not at home during the day – they’re with me in Room 10.  6 ½ hours a day, 5 days a week. That’s a whole lot of time in an environment that’s NOT at home with their families, that places a huge variety of demands on them, changes constantly, and doesn’t necessarily cater to their sensory or emotional needs.

And that’s just the environment itself... add into that the very human element of me as the teacher (not to mention the other adults in the room). I’m no autism expert. I read, I research and I try to learn all I can, but the more I learn, the less I feel like I know. ABA, IBI, play therapy, theraplay, sensory, stim, diet, medication, behaviour, belief... Some days I feel a lot like that old expression – “jack of all trades but master of none”. I’m willing to try anything for my kids, but not willing to commit to any one thing, which sounds great, but let’s face it, makes for a management nightmare. I’m not a behaviourist, a psychologist, a therapist, or even an advocate parent with the ability to make decisions for my students – I’m only their teacher.  Heck, some days I don’t even get a chance to work directly with each student, depending on how our day goes. Some days I find myself asking my staff at the end of the day “How was so-and-so’s day?” And my kids certainly deserve better than that...

I’m not being negative – I recognize that great change has happened this year. The kids are in a bright, cheerful, learning environment every day. They participate in group activities, and some days, we even get everyone to participate willingly! The room is safer and calmer, and kids who need intensive support are getting, if not all that they need, certainly more of it. They have access to sensory activities, and a sensory space that they can relax and engage in (which is back up and running, for those that are still wondering what happened after my last post). They are engaged in concrete learning activities twice a day every day, and they have IEP’s that reflect accurately their strengths and needs. Paperwork has been filed for OT, PT and SLP, and someday they may even all get the support they need!

But what about that belief? That love? That feeling that, as Carly says, someone believes in them and wants them to be the best them they can be? What about that balance between meeting their needs and loving them, or the even trickier points where those two things intersect and sometimes even overlap? Therein lies the real challenge of Room 10.  It’s a balance that suspect will always be wobbly, no matter how long I’m in this job, and some days, I’m sure it will tip further away from the middle than I want it to. I guess the best that I can expect of myself is to keep trying, keep striving for that balance, and when an issue come us in shades of grey, to always err on the side of love and support of my kids, rather than logic and reason. Because that’s the teacher my kids deserve.

Thanks for the reminder, Carly... 

Limitations of self...

I’m stealing this week, because someone has already said what I want to say, in a way that makes it crystal clear.
My class is exhausting – physically, mentally and emotionally. It’s hard work. But working with the children, as challenging as it is, isn’t my biggest challenge.

For me, the biggest challenge is working with other adults. This is a challenge for a multitude of reasons, as few of the major ones being:

a)    I am anal-retentive and a micromanager.  I want things done a certain way and I’d rather do things myself than have them done without the same attention to detail I know I would give. For this reason, I am bad a delegating.

b)    I’m not great at small talk with people I’m not close to. I’m actually quite shy and I rarely volunteer information about myself or my activities, especially if they don’t pertain directly to the setting or situation.  I’ve learned that this causes people to perceive me as snobby, which I feel terrible about.

c)    I often “fly by the seat of my pants”, for lack of a better description, which makes it hard for other people to help me.  Everything I’m planning is written down only in my head, so it’s just easier for me to do it myself.  It’s not that I’m trying to be a martyr, it’s just that it would take twice as long for me to explain it to someone as it would for me to just do it.

d)    I am emotionally tied to pretty much everything that I do. I do things that I enjoy and that I am passionate about, which is good in many ways.  Where it becomes hard however, is that I tend to shut down when faced with people who undermining what I do through ignorance.

This last point is key when it come to my classroom and my job. It’s been a rough week, so let me perfectly clear: I did not take this position to show off, to get attention, or as a stepping stone to somewhere in particular. I took it because I thought I could make a difference for my kids. Period.

The widely recognizable symbol for Autism awareness is a puzzle piece, and that’s exactly how I would describe my kids. They are puzzles – wonderful, amazing kids, whose communication and sensory abilities differ from the typical.  The suggestion that my students will never accomplish anything meaningful because of their autism sends me into a fire-breathing, black-as-night, impossible to banish rage, that despite my best efforts, I will likely hold against someone for a terrifically long time. As far as I’m concerned, if you’re not here to help them reach their potential, and if you already think you know what that potential is, get out of my classroom. Seriously. Because if that’s what you think, you don’t deserve to work with these kids.

They are KIDS. 10 years old. My youngest is 5.  And if you’ve already put a limit on what they’re going to be able to accomplish in their lifetime, you need to give your head a shake. Or maybe something stronger.  You have no idea how much they can do. How much they understand.  They are puzzles! Non-verbal doesn’t mean they don’t understand. It means they’re not talking to communicate.  That’s it. Don’t believe me? Watch this story about Carly: http://www.youtube.com/watch?v=F4XMlhCfp3Q

There are stories just like Carly’s all over. Kids (and adults!) with autism have thoughts, feelings, ideas and comprehension far beyond what any of us can know or measure. So please, educate yourself.  Imagine my students were one of your children.  What would you want for them?  What kinds of beliefs about them would you want their teachers to have? Me, too...

So here’s what I’ve stolen – an amazing list by Ellen Notbohm, and author and mother of a child with autism. She’s also expanded this list, originally a magazine article, into a whole book, and also has a how-to type book for parents and professionals. I’ve edited the descriptions to get at the main points for space purposes, but if you’re interested, the online article and links to her books can be found here: http://www.autismspectrum.net/DesktopDefault.aspx?tabid=248  I love this, and I’m planning on posting it outside my classroom door with a note that says: PLEASE READ BEFORE ENTERING.

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Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child -- a child with autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.”  Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people

All that I might become won’t happen without you as my foundation. Think through some of those societal ‘rules’ and if they don’t make sense for me, let them go. Be my advocate, be my friend, and we’ll see just how far I can go.

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‘Nuf said...