Letting Go... Or, Careful what you wish for

I love all my kiddos.

They are amazing, quirky, smart, funny and affectionate, each in their own ways. 

But let’s be honest – with 5 kids on the “severe” end of the spectrum in one room, things can get really crazy. (* and don’t get me started about how much I hate “severe” as a descriptor, but  as a blanket statement for the similarities in terms of how their individual autism presents, and how they've landed in Room 10, it’s a necessary evil) Everyone has off days, and although they don’t always start off that way, one of them having a really off day can often escalate into triggering others into a bad day, which can set off a roller-coaster of insanity that turns 3pm into heaven on earth. But thankfully, most of the kids are pretty even keel most days, and if we divide and conquer we can usually manage to keep everything chugging along, learning and even laughing as we get through our days together.

Except for Mr. Intense.  My precious boy, I am sad to say, has more bad days than good, and this is not a new pattern.  Truth be told, his worst days now are still light-years better than they were last year (pre-meds) – check in here for a taste of what we were all going through then.  However, even with the meds, even with consistency and amazing levels of support from all kinds of sources, good days for him still are a pleasant surprise. 

Late last school year, after a slew of accident reports and ongoing interventions, we all agreed that the level of support we were able to provide for him in our public school setting wasn't enough, and decided to seek placement for him in a provincial-level classroom – something they call Tre-ADD(Treatment, Research, and Education for Autism and Developmental Disorders).  For those who don’t want to check the link – they’re still classroom-based programs housed in schools, but they are staffed by therapists, a coordinator, and have their own support staff (nurses, OTs, PTs, etc.) They’re (typically) kids whose behaviour is such that they’re not able to be successful in a classroom, and it’s not an endgame – the program is designed to have kids go in for a couple of years and work on behaviour and readiness skills, and then eventually go back to their local schools. It’s the Cadillac of publicly-funded programs, basically.

Anyway, after filling out all the paperwork back in the spring, we heard nothing for months and months, and finally my principal got fed up with negotiating the school board red tape and called the program herself, and back in November, they came for a meeting and observation of Mr. Intense. Of course, the day they came he was a PERFECT angel all day, but with the amount of documentation we had and the amount of help and support his family really needs, they agreed to consider him, and the week before the holiday break, we got the call that he’s been given a placement, and will likely be moving there by the end of this month.  I was thrilled – and not just because I won’t be getting my hair pulled 40+ times a day for the first time in almost 2 years...

I was thrilled for his dad, who is raising him alone here while mom stays at home overseas and supports them, because there were no appropriate schools for Mr. Intense there, and despite the fact that they are both well-educated, they couldn't find jobs here. Dad is drowning with no family or friends for support, and will really benefit for all the extras that the new program provides.

I was thrilled for the other kiddos, because the number of times they've had their hair pulled, been hit, shoved or had their food or materials grabbed out of their hands is just not fair, and the reality of him not being in our room means they will all get more attention, less harried teachers and a quieter, calmer learning environment.

Most of all, though, I was thrilled for Mr. Intense. His is SO smart, and my inability to meet his needs has caused us both endless frustration.  He needs a functional communication system, a way to express himself, and skills to be able to self-regulate so that he can show everyone just how smart he really is every day, not just in rare flashes. And without 1-on-1, and without a team of people who are far more organized, consistent and knowledgeable than my staff and I, we can’t give him that. And so I was thrilled...

As we returned in January, though, the reality of him leaving has begun to set in, and I’d be lying if I didn't admit that my heart is breaking just a little. On our first day back Monday, he spend the day hugging me. All day.  He was so happy to be back that he didn't pull my hair (or anyone else’s) even once, and he would literally circle the room, come running over to wherever I was, hug me, and then go back to what he was doing. Over and over. It didn't last past Monday, but it was so damn endearing that it kept me smiling all day long. By Wednesday, he was back to being upset all day, and when I had to call his dad to come and get him Thursday because he had been in meltdown mode all day, I literally cried.  In front of dad.  By the time dad arrived, Mr. Intense was sitting still in the Quiet Room, head in his hands, with his nearly-broken glasses sitting on my desk and chairs overturned all over the room, and when dad wondered aloud (to both Mr. Intense and I) “What happened?”, I teared up and answered “I don’t know. He’s just so upset, and I don’t know what’s going on, and I’m sorry. I just love him so much... I wish I knew how to make him not upset!” Dad, who is lovely and supportive, reassured me “I know. I’m so appreciative of everything you do for him. I know you love him”, which of course just made me cry harder.

As he headed home with dad and I headed off to meet up with my TA’s and the rest of the kids, I was hit with such a wave of disappointment and sadness. Why did I resort to calling dad? What could I have done differently? How could I send him home when I know my time left with him is so short?

And I know myself well enough to know that that last question is also part of the answer – because even though I know Tre-ADD is what’s best for him, there will always be a part of me that will feel as though I failed him – not just on Thursday, but in general.  There will always be a part of me that wonders if I hadn't pushed to send him to Tre-ADD, if I had just tried harder, or tried something different, or been more patient, that he might have been more successful in Room 10. And I hate that feeling. And I know, as I sit here with tears in my eyes, that when the day comes when he finally does leave us, I won’t be thrilled about it at all.  I’ll be sad. But maybe that’s my saving grace, because if I’m truly sad and not happy, it means that I sent him for the right reasons, not the wrong ones.  And although it won’t erase the feeling of having failed him, it will allow me to take comfort in remembering those hugs and that brilliant smile once it’s gone, and to know that part of being a good teacher to these kiddos is knowing enough to know when to let them go, because somebody out there knows way more than me about how to help him, and maybe my job was to help get him to those folks. I hope...

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... 

When the going gets tough...

Today was a rough day in Room 10.  One of those particularly hellish days where everyone seems a little off, and a little off for each kid ends up being a lot off as a group… I’ve had a number of fish tanks in my life over the years, and I can liken today to this… You know when you sprinkle the fish food on the surface, how sometimes at first, nothing happens? Then all of a sudden, one fish heads for those flaky little morsels, and suddenly it’s a writhing swarm of open mouths flailing all over each other in a seemingly unending tangle of crazy?

That was today.

Maybe it was the fact that I was at a workshop yesterday. Maybe it was the big fluffy snowfall this morning. Or the fact that it was Friday. Or the fact that it was assembly day and the routine was a little off-normal. Maybe all of these things together, who knows?  What I DO know is that by the end of the day, all I wanted to do was lock myself in the Sensory Room and have a good cry, throw myself off the padded walls for a bit, and maybe peruse the Want ads in the paper for a nice quiet office job.

I hate days like this, and thankfully, they are rare. I don’t hate them because of the stress, or the worry that someone is going to end up hurt or injured (which happened). I don’t hate them because of the precious, hard-gathered classroom items that get destroyed beyond repair (which also happened). I don’t even hate them because I end up tired, sore, and emotionally drained (which happens fairly regularly).  What I hate most about days like these is that I come out of them feeling like a terrible teacher, because I know that I could have done way more for my kids, as a teacher, than I was able to demonstrate today.

I want to enjoy my kids! Goodness knows I love them, each and every one, but I have to be honest, on days like today, sometimes I don’t like them very much. And I know that sounds horrible, I do. I don’t like ME, because of it, but I can’t help it. It’s very hard to like the child running in circles around the room, shoving other kids and laughing.  Or the one shrieking, refusing to eat and smacking people in the face. The other one shrieking and running around pulling hair, also laughing. The one darting around the room to grab and throw things, or the one dumping food on the floor because all the others are getting attention from misbehaving so why shouldn’t they get some, too? It’s maddening.  It’s infuriating. And it most certainly doesn’t bring to mind the words “like” or “enjoy” - even when you know in your head about communication and behaviour, sensory processing, and the myriad of other reasons for what is happening. You just CAN’T pay attention to everyone at once, and if you manage to get through the day in one piece, you end up like this – re-reading your post in horror, because you’re admitting all the things going on in your head, which on one hand, you really want to delete and write something positive, but on the other, you feel like give some perspective to all the good things that DO happen in Room 10.

It’s not always wonderful. Or magical. We have really bad days.  And I don't just mean the kids - I mean all of us.  One really bad days, I don’t usually blog.  I try to let go of days like today, not record them. Certainly not share them with the world. But there it is, and I refuse to delete it.

I guess the point I’m trying to make, though, is not that today was awful, but that in the end, it’s only a day. Not every day is like today. And really, if I’m being honest, even today had its moments of sparkle. This IS my blog, and try as I might, I can’t just leave it to the negativity of the day.  For myself, and for anyone reading this, I have to leave it with the same positivity that I depend on to project me into the next day (although I have to admit, a weekend to unwind doesn’t hurt either!) I LOVE my students, and sometimes loving them as much as I do and wanting so much for them makes for very hard days, when things don't go the way I know they could.

Here’s what was great today: I watched one of my students participate with the other second graders in a Lunar New Year parade at today’s assembly. I wish I had a picture of her face as she bounced around with them, banging her tambourine – it was exquisite! My big boy was requesting beautifully all day – asking for help with no hesitation when he needed it, finding the right words at the right time – great progress.  My littlest was a quivering ball of energy today – I swear he couldn’t have been more wired if Red Bull was running through his veins – but bless his little heart, he FINALLY handed me the picture exchange at snack time to ask for more Cheerios – twice. Finally, at the end of a very long day, after the kids, the after-school meeting, the inbox full of emails, and the paperwork gathered for this weekend’s “homework”, I was blessed to have a friend sit on the floor with me and laugh for half an hour, as we attempted to blow up my brand-new ball pit for our gross-motor “Wiggle Room”.  We failed miserably, leaving it half-inflated and sad, and shaking our heads at my “wisdom” in deciding that a giant inflatable pit full of plastic balls was a GOOD idea for the room after the craziness of the day. Stay tuned for how THIS turns out!

Happy Friday, everyone...  Thanks for helping me get out of the fish tank alive. J