Thursday, September 15, 2011

Flight Paths

When you start opening up about the conflicts and incredible highs of parenting a child with special needs, you begin to receive tiny little offers to enter the worlds of other special needs parents. It's a dance similar to that of a pollen bearing bee. I offer a slight story of stress and my (lack) of coping and you mention lightly things aren't great either.

We nod, wishing to open up, but not wanting to suggest that your child may be 'special' in that way that no one ever expects. I nod my antennae your way, twitching, signalling mentally that I want to get to know you, to share, to support, to be supported. You twitch back but the bell rings and chaos erupts. My needs will have to wait.

Initially I don't know you parent a child with special needs and you don't know if I do either. But I remark how we're late all the time because we're having trouble finding socks that don't 'rub'. Other ears pick up that I'm a lax mother who just needs to lay down the law. Or take away toys for non-compliance, but you suggest that Woolworths is selling socks knitted with Bamboo and they're really soft. You casually mention your child is sensitive to touch. Our antennae are wiggling, our soft bee behinds are waggling. Yes, I have made contact with someone flying a similar path to me.

My ears prick and realise your child has a sensory disorder, hey, mine too. But I'm too shy to admit it. Because what if you don't actually know what it's like and you start on a diatribe about how a good boot up the butt never did anyone harm.

I listen to you mention that your baby has a tummy problem and hear you mention that singular word reflux. My memories cover me in emotion, awash with the feelings of failure and guilt that time brought me. I come over and tell you that mine had it too and ask if you've gone onto Crying Over Spilt Milk yet and rung their number? Because they have nurses who can help. You say yes and we both marvel at the way people are always there for you out of the kindness of their hearts.

I can't tell you the relief it brings, this quick, almost missed exchange. It's too early for me to whinge and moan to you, but we made idle chat and we talk about reading. My wiggle and waggle is beginning to match your own. I don't want to overstep my boundary with you and ask about your child or husband or family. So, I bid farewell and make the long walk back down the hill to the car.

When you go to school, you meet The Mothers. The Mothers are generally the same, no matter the school, the price bracket of nearby homes and the cars they drive. I'm sure it's been recounted in ways much more hilarious than I could, but it's true. You meet people of all types and they all fit into the various branches of socially acceptable. And occasionally, you come across those that don't fit into socially acceptable, like the mum who leans over and everyone realises she wears dental floss as underwear. (And secretly, we're all envying her freedom, body and apparent lack of restraint.)

And then you meet the mothers who are holding on by a hair, overworked, over stressed and under compensated. They smile dental poster smiles as they hear others talking about overseas holidays and snorkeling. They ooh and ahh at the mention countries like Fiji, Samoa or even Australia. They wish you well and tell you they hope you have a wonderful time. You tell yourself it's ok, one day.

Slowly, others start to identify you as a special needs mum. We're the un-manicured, tossled hair, no makeup still wearing yesterday's clothes mum. I've been wearing this shirt for 3 days you admit. Another mum casually admits she has on the same knickers as yesterday because non are washed. A third remarks she washes her sheets daily and doesn't know how on earth you people survive in such a state. Your heart sinks. Opening up is hard. Sometimes, people just don't get it.

Time passes with our dance, my steps further opening me up and your steps further proving you feel safe with me. Soon, we spend 45 minutes on the playground talking about unpaid bills, medications and how, actually, this wasn't what we signed up for.

I remark how I had this idyllic view of a family of 6, two parents, loving and in love, and four picture perfect kids. We were going to homeschool and have big family moments that heal all childhood wounds. It was going to be, well, absolutely perfect. And then, here we are.

And actually, your voice crack, maybe its good that we only have one because, you know, you'd hate for the others to miss out. And she says that she had a dream of having 3 kids and the first 2 were fine but the third, well. No one expects imperfection. Or poor health. Or a life-sentence. No one's dreams match up, but this, well, this hurts.

You overhear some others talking about going out with female friends to a bawdy show with men stripping down. It's ok, they say, they were raising money for someone's cancer treatment. You smile but inside you recount how no one is helping you pay for home help or brings you meals or offers to mop your floors. After all, in this country, it's not the done thing to ask for help. You're meant to be self-sufficient, humble and happy for others.

And, it's not that you're happy the other person is suffering. G-d no! You hold your child tight and imagine what it would be like to lose him or her, or for him or her to lose, well, you. It's unimaginable. Your gut aches.

It's just that you wish you had the right, the reason, the privilege of having bad days, of waiting all day in a hospital for an answer and getting one, and desperately sought moral support from others. Instead, what you get are leers from people in the grocery store who don't get it, unhelpful advice you didn't ask for, and bills. You wake up some days wishing you didn't wake up and feel enormous guilt over feelings those things. You love your child. You feel blessed for having this child when so many do not, and then you feel angry because damnit, what on earth did you do SO BAD to deserve all of this?

For my child to be dealt this hand? He or she is innocent and asked for nothing. I'm the one who brought him or her here. Punish me, damn you.

And your husband asks who you're talking to, as you're sitting on the loo, hand crunched tightly around a loo paper ball. He's stressed too, you remind yourself. He goes to work, turning off all the drama and emotion, so he can do a good job. To get paid. He comes home and is hit with a wave of the drama and emotion and reality is a cold, icy wake-up call. He's worked so much overtime you can't remember the last time he was home in time for tea. But we all sacrifice you say, holding yourself together. We all do it together.

You look at me and I look at you and I am praying that tonight you're going to understand my wiggle and waggle and that I am open to receive yours. We work together, like a hive, often our worker bee mantra overcoming our real, human needs.

But its not all bad, you tell yourself. The highs are so high. The pride and the joy is immense. Simple tasks that are dealt with without the drama and emotion are praised and the happiness is unbridled. It's something other special needs parents understand. Today, you say, we got into the car without tears. Hooray! they chime in. They get it. They feel that joy too. Your joy is theirs. Your sorrow is theirs. And their sorrow is yours too.

I hope, a school mother says, that she'll have an adequate life. You smile back. I hope she has that, and so much more. Then you selfishly find yourself thinking, I hope I have that. And so much more.

When people ask about parenting a special needs child, all the cliches come: The highs are high. The lows are low. The days are long and the nights are longer. But the years are short and time flies. How is it I long to tell you my struggles and my successes, but I don't want to burden you with them as well?

I hope to have my family work together as a hive. But I also yearn for my community to do so as well. I want you to love your child and educate him but also to prepare him for a life of service to others. To his future family and to his future community. So that he has the kindness, the patience and the desire to want to help my child and so many others, once we are gone. So that his antennae are primed and ready to accept and acknowledge the wiggle and waggle of other's flight paths.


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