Are You A Member Of The Club?

I love Bloggityville, I really do. But there's definitely a 'class system' in place. Big name blogs get all the readers, the book deals, and loads and loads of comments. And that's so cool. I love them for it. But I have counted many, many times when a blogger has missed the mark. I've gotten quite good at averting my eyes (permanently - no subscription, no following on Twitter). Everything continues on just ducky.

And then every now and then, a Big Name Blogger gets is SO DARNED RIGHT that you just want to cry because it's like they've crawled into your head and picked your brain of all its most awesome thoughts. The language is real. The sentiment is real. And suddenly THEY are real.

Tanis over at Attack of the Redneck Mommy just switched over from 'awesome, but untouchable' to 'I love this woman and want to send her gifts'. This is the post that did it:

Dear Internet: I'm Placing You On Notice

Now, clearly Tanis doesn't need the traffic from my teeny blog. I doubt I'll raise a blip in her blog stats and you know, that's totally fine :) She has no idea who I am, and I love her anyway. But being the mother of a special needs child, I don't think it's going too far to say we share a connection. We're part of a club, that really only the other members of the club can understand fully.

Tanis shared a couple of joke ads on her site and expressed her disgust. I am with her 100% on this. I couldn't even face watching Tropic Thunder recently, despite loving (in general) the stupid comedy of Ben Stiller, because of the barbed jokes steered toward disabled people (Stiller's character, an actor, had previously starred in a movie called Simple Jack, and some of the 'gems' the marketing people came up with for Tropic Thunder referenced this, with the phrase "Never Go Full Retard". Teenage boys watching the movie adopted it as a catchphrase. I've heard it at least three times since, in conversations picked up in public. Can I just say - teenagers these days are, in general, really, really intolerant).

I'm not a confrontational person. In fact, I'm a wimp. I'm the person who hears an insult, stands there with her mouth open and only after the perpetrator has left the scene do I come up with the perfect retaliatory remark. Although, perhaps that's a bit of divine intervention at work, LOL.

Only once have I ever been in a situation in public where I failed to emotionally restrain myself. The rage was radiating out of me as sure as sweat pours off a marathon runner. In that situation, I let fly. I verbally beat that poor person into submission - or at least, I like to think I did. They probably walked off with their friends, chortling at the psycho woman and the weird kid who flapped his arms and still wore a nappy at 5 years of age. Then forgot about me.

But I didn't forget.
Mamas never forget.

You mess with our kids - even in a general sense - and we bite. It's a law of nature. We protect our young. And failing a direct attack on our own children, we will go into bat for any (and all) special needs kids we see who need it. It's what The Club does. It's unspoken, but it goes way down into the very depths of ourselves, our core.

Do you think it is easy, you ignorant idiots (that's the mean people, not you Bloggityville), to walk around each day, living with our hearts outside of our chests? We ache every single day.

Please, take a moment to click on the below links. It might just afford a small window of understanding :)

Shay (Mountain Wings)
Don't Mourn For Us (Jim Sinclair - autism related but interchangeable with other disabilities)
39 Cents Of Understanding (Mountain Wings)

The Gift of Autism

The 'Elle' of A Day In The Life Of Elle recently put up an excellent post about how parenting an autistic child feels. Big hats off to her because she really nailed it, at least from my perspective.

I don't think 'why me?' anymore. I think 'why NOT me?' Because - and perhaps this is waxing a bit too lyrically, but bear with me - autism is a gift.

Yep, you read that right. A gift. A great big pass-the-parcel of thorns, no less, but a gift just the same. You unwrap the first crying, tantruming, frustrating, bewildering layer and you're stuck with the next issue to deal with.

But eventually, and ever so slowly, you get closer and closer to the treat in the middle. Because it doesn't matter what the outside packaging is, or the trials you have to endure to unwrap each layer along the way. What matters most is the core.

Five years ago I spent a great deal of time crying. We'd just been diagnosed, and life looked bleak. Now, looking back, I can see the scattered remains of past, challenging 'layers' all around me, and we're nearing the heart of who Master J is. We still manage a few thorn-pricks along the way and sometimes we're forced to RE-wrap with particularly challenging behaviours on occasion, but we've made it this far and I wouldn't swap any moment, any layer, for anything. We feel the way we feel and we are the people we are today precisely because we've walked this road, not in spite of it.

For those interested, please see Jim Sinclair's "Don't Mourn For Us" essay in the sidebar to the left. When I first read this several years ago I instantly began to change my perspective on how I viewed my son's 'gift'. I used to think of it as a burden, as something that, if medical science provided a safe and foolproof way to avoid or remove the issue altogether, I'd be signing him up for immediately. But you can't remove the child from the condition. As Jim puts it:

"Autism is not an appendage. (It) isn't something a person has, or a 'shell' that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive, it colours every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person -- and if that were possible, the person you'd have left would not be the same person you started with.

Therefore when parents say 'I wish my child did not have autism', what they're really saying is 'I wish the autistic child I have did not exist and I had a different (non-autistic) child instead'. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."

Woah, huh? Those are some pretty powerful words, but ones I've taken to heart in the years since. Life won't be easy. One would be pretty naive to assume that. But focussing on the layers ahead, the seemingly insurmountable task of raising this bundle of sparking nerve fibres, is probably going to have an enormous impact on how you relate, or even how you love, the child in front of you.

For the record, I count Master J's success as both the most challenging, and most rewarding of my time as a parent :)

Cheers,
Lizzie

Mama Bear of the Week

Scatteredmom over at Notes From the Cookie Jar has a wonderful post up this week, all about assessments and emotions and feeling like you want to be the best advocate for your extra needs child but that you're failing miserably. And, ultimately, having your Mama Bear instincts proven right.

I can see so much of our family in hers - we've been through many of the same things (in different ways) with Master J and Boofah - and we've needed to pull out the Mama (and Papa!) bear suit on more than a few occasions ourselves.

I love Mama Bear days, LOL.

Cheers,
Lizzie

Toilet Training the 'Special' Kid

(Master J aged 3 months - February 1999)

I remember, not so long ago, having three children in nappies. That's three children in disposable nappies. Even with just the mid-range brands, we were spending around $50 a week minimum.

Now some might examine this and wonder why on earth we had three children in nappies at the same time. We didn't have triplets, and our children aren't abnormally close in age (no 'Irish twins' in our family!) Master J was 3yrs, 1mo when his sister was born, and Boofah was sandwiched somewhere in between.

The difference in our situation was that Master J is disabled and didn't toilet train until the age of 6. Yes, you read that right. The problem is quite common amongst the disability community, but judging by the reactions we got during this timeframe, you'd have thought the poor boy was twelve years old and not trained out of sheer laziness on our part. There's an old saying in regards to toilet training, often directed toward despairing parents, fearful their angel child will never toilet train - "How many twenty-one year olds do you see in nappies?" It's meant to reassure them that eventually, every kid trains.

Well, for the longest time, we honestly thought our child was going to be that grown man in adult diapers. Families living on the autistic spectrum and other families with disabled children will probably understand when I say that toilet training Master J was just about the only thing we thought of between the ages of 3 (at diagnosis) and 6. We had actually started training the summer he turned 2, right about the time we noticed something was 'off' - he wasn't talking at the time. So all in all, we trained for FOUR YEARS.

Now, think about that for a moment. Four years is a university degree. Four years is from one Olympic Games to the next. Four years is one year longer than it took to produce my little monkeys in the first place. From the time Miss Moo was born until Master J finally trained spanned three full years. For me, that entire period has morphed into one, long, retrospective Twilight Zone episode. I changed one nappy, turned around to dispose of it, and the next child needed changing. I shudder to think (now) of the landfill this caused but in all honesty, some things are worth it to preserve one's sanity, and disposable nappies were my lifeline. These were also the Years of Diagnosis and it was hard enough to wade through the wet cement that was my life during that period as it was.

It was actually Boofah who trained first. About 18 months later, Miss Moo was nearing the end of her own training, when just about overnight, Master J 'got it'.

Just to paint a picture - this was a child who we'd put on the toilet every day since he turned two years old. Throughout his kindergarten (preschool) year, his support worker had scheduled one, sometimes two, toilet trips for each kindy session. That's roughly 200 opportunities for him to produce something on the toilet, and he never did - and these were just the half days he was at kindergarten! When he started primary school at age 5, he was not toilet trained. Even though the school he was enrolled in had a special ed class, they'd never had a non-trained child before. They actually had to section off a part of the female staff toilet and bring in a height-adjustable doctor's bed. Now that's something to share with the other Mums in the playground! He showed no signs of understanding what the toilet was for, but we kept going. Every single day. Something like 1500 separate trips to the toilet (and probably more) over the four years it took him to train. Toilet training a regular kid doesn't even come close to the effort it takes to train a kid like Master J.

We'd just broken for the third term holidays in that first year at school, and like we had hundreds of times before, we just decided to bite the bullet and keep him in underwear as much as possible while we were at home. Our carpets were ruined anyway, and we'd seen so much pee and poop it simply didn't register anymore, LOL. There was nothing to lose.

We still can't figure out what was different that time. He went cold turkey with the daytime nappies and only needed the night nappies for a week, and that's it. After four years of desperation, tears of frustration, and thousands of bribes, one week and a packet of underwear was all it took. The best way we can describe it is simply that his brain finally matured enough to match his body signals. Maybe before this, he was getting the signals but simply had no idea how to process them (and this sort of ties in with his early sensory issues). His brain just needed a bit of extra time to catch up.

But I can still remember the day he did his first wee on the potty. Oh my gosh, I went crazy! I actually rang up his old support worker - whom he hadn't worked with for over a year at that point, - and shared the good news. She was as excited as we were. For those amongst us who had 'easy trainers' or 'on par' kids, this might seem a little over the top. But I count Master J's eventual triumph over toilet training as one of my parenting highlights :) And I won't even tell you how thrilled we were to see the first poop! LOL.

Fast forward several years and alot of the issues we had with Master J in the beginning have diminished. He had quite a severe speech delay around the time of diagnosis (one of the more common factors in an autism diagnosis) and he now has functional speech. A lot of the initial behavioural issues have evaporated (though we still have our moments, LOL). And life in general has mellowed - our acceptance of who he is and more importantly how he is, has settled into a comfortable place.

But tonight, as I was mopping the wall - yes, the wall - after one of his wayward-half-asleep-and-not-concentrating toilet trips, I only had to think back to what it was like just two-and-a-half years ago, when I was desperate and crying myself to sleep over images of diaper-wearing teenagers, and I almost felt grateful to be cleaning wee off the wall.

Almost. LOL.

Cheers,
Lizzie