Showing posts with label Acceptance. Show all posts
Showing posts with label Acceptance. Show all posts

Thursday, March 27, 2014

An Unfolding


 
Being a parent of a child with special needs is many things, but dull it isn’t. Well at least not for me! I am constantly having mini-awakenings – small aha moments as the meaning of my child’s diagnosis unfolds a little more day by day.

                One such unfolding occurred this morning when I realised that while we have spent Malakai’s life so far doing everything we can to afford him a ‘typical’ development and will we will continue to do so, the opposite of this is also coming into play now. Like a yin and yang or push and pull, I have realised that there are some things we simply cannot improve on.

                We can (and have) helped Malakai to develop in amazing ways – and I believe this is because I have never placed a ceiling on what he’s capable of. I have never thought he was incapable of something simply because of his Down syndrome.

                But – and this is a new but… I have realised that there are some things we simply cannot push him to be or do. There are some things we simply have to accept. And I know I am sounding rather cryptic here, so let me give an example.

                Walking into school…

                Something that most kids just do. Maybe a tear or two, even a bit of minor manipulation. I know because I’ve been there with Harlan. But eventually your kid just walks into school right? Well not if they’re Malakai.

                He simply refuses to walk into school like the rest of the kids. He cries, screams, performs and is genuinely and desperately unhappy by walking into school. And together with his teachers we tried everything – nothing short of a welcoming party! The only thing that was missing was a marching band and streamers… And yet? Not having it.

                Last week after a particularly difficult drop off where Malakai even tried to bite me I stumbled back to my car after he’d been dragged off into school and I wept. Big hot tears streamed down my cheeks. I just couldn’t believe that after all we had been through with Malakai, after all his hard work and our immigration to another hemisphere, it could all fall down on walking into school. Seriously? It would be this that would undo us?

                Then it dawned on me – step back and take the pressure off. Think of another way – walk him to his desk myself. Give it a bash because really, it couldn’t get much worse… And it worked. He goes in happily now when I take him. Problem solved right? Yes! But this is what I mean about a yin and yang – not accepting and accepting. It’s a fine line and a funky dance…

                I realised today that there are just some ways that Malakai is different. He will never be the same as other kids. And nothing we do can change that. We need to accept that and meet him where he is.

                The challenge is deciding when to accept and when to push him to achieve more, do more and be more… that’s an aha moment for another day obviously.

Monday, November 11, 2013

1+1 = 4 x C to the Square root of Chaos

 


I never was the most gifted student of mathematics, and as someone who loves language as much as I do I was shocked to recently discover that mathematics is a bit like another 'language' and that I should in fact like it if I like language so much...

Nah...

Not my thing.

I was so happy when I wrote my matric maths final paper way back when (let's not mention how many years ago that was!) and I think I closed my paper and myself on maths. Beyond the most rudimentary of addition and subtraction when I need it most, I steer clear of sums of any kind. I just don't have it in me...

So I was understandably excited the other day when I met another dad who agreed with my suspicions on additions to the family - that is to say that one child is one child, of course, but adding another child to the equation does not equal two... well not in terms of work involved, the attention forcibly demanded, and the overall effort needed to get from morning to night without needing to crack open a bottle of scotch.

No.

1+1 simply doesn't = 2

Why is this simple act of adding another child to a family such an upheaval? Why does it feel like we now have 22 children instead of two, like we missed something along the way that we were supposed to read or know or learn? I had to start to think, and because I'm just not that good at mathematics, I couldn't use figures to well... figure it out.

This is my theory though - and I think I've kind proved it when I happen to have just one of the boys with me instead of both, which by the way is a total breeze and makes me feel almost like a good mom again - but I digress... The reason that two kids equals the effort of having 22 kids is because they are boys (yes, this matters... and no, all you moms to girls only... girls simply don't get anywhere near the chaos of boys), and because they wired to do several things seemingly simultaneously and with such agility that I sometimes feel like I'm in the middle of a guerrilla warfare, not sure of which way to turn...

I like to call my theory the 1+1 = 4 x C to the Square root of Chaos

Compete
Two kids like to compete for space. For attention. For who gets what first. For more attention. For who spoke first. For more attention. For who broke what and when. For more attention... and... ummmm... for more attention (I think that about covers it).

Compare
Yes, they want everything that they other one has... all. the. time. It can be a completely useless broken clothes hanger (this is not a word of a lie) and the other one will want the exact same thing, in the same colour, broken in the identical way. And you're like, "oh no, I would never give into my children in that way..." but I do, and you will too. Just wait.

Conspire
Just when you think your children will never stop competing and comparing, they do something even worse... conspire. The team up like a crazy little two-pack and just attack; hanging off my arms and legs, jumping all over, giggling as I trip all over the place and try to get them into the car without having one of them land under oncoming traffic. I have had mornings dropping the boys at creche where I just hang my head I leave and exhale... seriously. And then conspiracy usually leads to the last 'c'...

Crash
You just know it... this is going to end in tears. Someone is going to have a meltdown. There will be snot, and maybe even blood, and definitely screams and accusations and a total drama...You're just not sure exactly how it will happen, but it's coming and that's no lie...

So, that it exactly why 1+1 does not equal 2! Because with two (or more) invokes the  4 x C to the Square root of Chaos. But I've learned a few things in my last almost-four years of rearing 22 children, and there are a few antidotes - the two most popular being smiles (your childrens', which will just make you instantly forget everything a bit like the zapper thing on Men in Black) and naps (please refer to my very important post about this) which give you time to recharge and regroup, ready for the next round...

Monday, October 28, 2013

The Big Thing


 
 
So I got news today that our UK settlement visa applications have been completed and are enroute back from the UK to the visa application centre in Pretoria, and I’m like WHOA… (in caps, yes)

 

This means that technically we could meet our initial flight bookings for the 6th of November, which is like tomorrow… pretty much… almost… ok not really, but it feels like tomorrow. And I’m all like – wait a minute, don’t I need to do things, finish things, see people, get a good haircut in rands, buy new bras and stuff? And what about The Big Thing? The Saying Goodbye to My Country Thing?

 

Because although we’ve planned this whole immigration – thought it through like the responsible adults and parents we are – the whole thing has only taken about six months from our decision to, well… today. And I’ve been so busy planning a trans-continental-and-hemisphere move that I’ve forgotten to actually process The Big Thing.

 

Because while I know this is a good decision for Malakai’s present and future – can’t argue with that – it’s not like we hated our lives over here. Not by a long shot. We were happy, we were finally coming out of a very long and sleep-deprived journey as new parents and entering the phase of ‘not-so-new, not-so-tired, hey-let’s-have-a-braai-at-our-place parents’… and then we leave. We walk away from the promise of an actual social life, a rekindling of old friendships, and a pretty friggen awesome neighbourhood (holla Centurion!), for the cold, drizzly, unknown of semi-rural England.

 

And suddenly – even though I miss my husband, and my children are pretty much aching for their father with their entire little bodies – I am not so excited about boarding that plane… I am scared. I am not really ready to say goodbye to my home and my country. I feel like I need to release some balloons, or write a note and bury it, or plant a tree or do something with profound meaning (that is not quite Grade 9-ish in character). But what?

 

Well, I’ve got like a day or two to figure something out. I think. But still – how do I say goodbye? How do I leave and possibly never return (unless it’s on a friggen awesome Pound-based holiday)?

 

I’m not sure. For the entire six months it’s been about the planning the move, finding the money (much too much of it), conversing with the immigration lawyer (without sounding neurotic), the visa applications, the mind-numbing paperwork and forms, packing up an entire house, dropping my Dolly (the boy’s nanny and my right-hand-woman) at her new job without crying openly in front of anyone, while still maintaining some kind of normalcy for the children – but it’s never been about saying goodbye. Not until now.

 

Now I actually face saying goodbye – I actually have to do it and I just feel so unprepared for this. So totally unprepared. Maybe I think too much; people move all over the world all the time, every country is filled with foreigners making lives, meeting people, and having a good time. Hell, I love to travel, and off we go in a few days’ time! So what’s the big deal about The Big Thing?

 

Could it have something to do with the way in which South African’s subconsciously judge those who choose to leave? Faders. Sissies. They obviously don’t have what it takes to make it in Africa – and whatever, because we know it rocks here. The weather, the people, the spirit, the sport, the landscapes, the beauty, the big sky, the wildlife, the stars, the bravery, the can-do attitude. Those who want to leave are ‘giving up’ on South Africa and we secretly hope they’ll hate where they’re going to more than they hated South Africa.

 

But you see… sometimes people don’t leave because they’re running away from something. Sometimes people leave because they’re running towards something – and there is a difference. We are not leaving because we hate our country, because we think it’s a horrible place, because we are scared for our futures here (ok, well we are terribly scared of Malakai’s future here – that’s totally true). We are leaving because we are going towards something – the best education we can offer our child with special needs, and the best for his future. That’s what we’re running towards, that’s our driving force, because South Africa simply cannot offer it. It just can’t. Not right now anyway.

 

So is part of my fear of leaving that I don’t actually want to leave, that I’m not running away? Maybe… So there’s only one thing to do Loren Stow! Look forward, run towards an amazing inclusive and empathic education system for Malakai. I’m a-runnin’, but I still need to process this step, this Big Thing, this very difficult goodbye.

Monday, October 21, 2013

"The Talk" part 2

So, it’s late in the evening and the boys and I are chilling on the floor in the lounge. They’re both calm and happy, so I take this as my opportunity to have ‘the talk’ with them. Out of habit I talk to Harlan first, asking him if he wants to know why his brother struggles to talk and his tummy doesn’t listen to him (code for: Malakai still wears a nappy at the age of 5 years)?

Harlan says ‘yes’ and I internally kick myself; speak to Malakai first fool, he’s the one with the Down syndrome! So I turn to Malakai and say, “Hey babe, you know how we visit Karien, Susan and Nadine every week (his therapists)? And you know how you sometimes struggle to speak clearly?” Malakai nods.

So I jump in with both feet and pull out my iphone – yes, you heard me. I follow a number of Down syndrome organisations on Facebook, so open them up and show Malakai and Harlan some pictures of the young kids, “Kai!” says Malakai as he looks at the first child, obviously thinking he’s looking at himself. I take this and run with it, “Yes, you see, there is a little boy that looks like you babe; see Harley? This little boy looks like Malakai a little bit?” Harlan nods. So I go through a few more pictures and show the boys, explaining that there are many little children who look a little bit like Malakai.

“This is because Malakai has Down syndrome,” I say as nonchalantly as I can muster. “You see guys? And this is the reason why Malakai needs help to talk clearly and his tummy doesn’t listen to him. Because he has Down syndrome. But there are many little kids with Down syndrome, see?”

”Like my brother?” Harley asks? “Yes angel, like your brother. And there are many brothers and sisters in world who are like you, with a brother or sister with Down syndrome.” This, I think flies over his head a little…

“So,” I soldier on while I still have their attention, “This is why Malakai is a little different, because he has Down syndrome. Can you say Down syndrome?” Harlan says it and Malakai tries. “And, this also means that Malakai has a different set of rules to us Harlan. You, me and daddy – we don’t have Down syndrome and we have a set of rules. And Malakai and other children with Down syndrome – they have another set of rules…” But by now the kids have both lost interest and my words are pointless.

So, we’ve taken a step towards naming Malakai’s learning difficulties, and I will have to talk about it often and in passing so that it becomes part of our family’s (and the kids’) understanding of who we are.

I am trying to tread carefully between defining ourselves as a family touched by special needs – it is an integral part of our lives, of course – and also carrying on as normal, because although Malakai has Down syndrome, it is not the be all and end all of our lives. Not at all.

So it’s kinda like wearing glasses – you know you need them, you can’t function optimally without them, but they don’t make you who you are. You have them on every day, they go everywhere you go, you never really stop ‘seeing’ them, but they aren’t uncomfortable or embarrassing or horrible or anything – they just are.

That is the balance I am trying to strike between the fact that yes, Down syndrome is a big part of our lives and almost everything we do includes it in some way, but that it’s really very run of the mill, okey-dokey, seriously not a laboured and horrible and sad thing at all. Like a pair of glasses, once they’re on, you don’t think about them anymore. They’re just there.

Get it? Got it!

Tuesday, October 1, 2013

Boots 'n all


Over the past week my family has undergone some serious changes, from seeing our stuff loaded into the back of a container bound for the UK, to moving house and saying goodbye to my husband who will be spending six weeks in the UK ahead of our arrival. It has been busy, it has been chaotic, it has been stressful, and I now feel as though I’ve been stripped to my rawest point.

                Rawness is not a luxury I can afford though as I prance around, all smiles (or stiff plastered-on toothy grimaces) for my children in an attempt to keep everything as normal as possible. But who am I kidding? We are so far removed from our safe routine that I would be an idiot if I thought the kids don’t notice all the changes. But I try anyway because in amidst all the stuff it’s one of the few things I can actually do – maintain routines and feelings of safety – and not just for the kids, but for myself as well.

                And I am sure it has more than a little to do with my personality and parenting type – some would see this as big ol’ adventure I’m sure, but not me. I’ve realised now more than ever that I am a person who thrives on routine, safety, and predictability – and I’ve read countless times that children thrive on (and need) this too. I am just not comfortable until everything has a place and we all know what time we hit the sack at night – to put it simplistically.

                Can I be a ‘barefoot parent’ if I’m such stickler for routine? I am so sure that a person with my level of anal-retentiveness is automatically a ‘hiking boots with knee-high socks just in case of snack bites and random ticks’ parent… And, if that is what I am – boots and socks and all – can I ever hope to come close to ‘barefoot parenting’?

                And maybe I’m bending the rules here, but yes dammit, I think I can! I think that once the routines are set, I am sure I’m being a good mama, and I feel safe and sound, I can chuck the boots and knee-highs and let my bare toes sink into the soft green grass. But for now, it’s uncertain and new and my natural instinct is to don those boots and all.

Thursday, August 29, 2013

Someone please report me!

I am probably going to come to regret writing this post, but hey... what is blogging if it isn't an honest look at a person's life? And, in the interests of letting other mothers know that they are certainly not alone, it is my obligation to be as open as possible - not only about the good, but about the bad as well...

This morning was one such day. You know the days when you feel like you've simply lost any and all control over your children? That you've failed miserably and you're up the proverbial discipline creek without a paddle?

What started off as a good day - and by that I mean I managed to dress Harlan without a temper tantrum (10 stars for mommy!), and off to Speech Therapy we went (our usual Thursday morning appointment for the past... oh I dunno... 4 years!).

All the therapist wants from me is five uninterrupted minutes at the end of the session to discuss Malakai's progress and our work for the week ahead, but no. The boys will not let me have 5 minutes, or even 15 seconds for that matter! They run around her room, screaming, unpacking her handbag under her desk (gasp!), trying to escape out the door, the window, climbing the ceiling... whatever they can manage to achieve.

And I try everything (as I do... every Thursday) to keep them quiet. But no. There is nothing like two children who for all intents and purposes seem to have been raised by wolves, running around a therapy room totally oblivious to their mother's pleas for them to sit for. just. a. minute.

Eventually I am dragged out of the place, waving a hasty goodbye to the therapist, and we hop in the car for the 3 minute drive to creche. There the boys run off into the playground (the opposite direction of the classes) and I am left to chase after them in my very unflattering way...

I can carry on but whatever - I am sure you get the picture.

It is on days like these that I wonder if I'm the worst mother alive, totally incapable of rendering to the world well-behaved children? I wonder if I should report myself to child services for the obviously terrible job I'm doing?

There are days like these for every mother I suppose - and today happens to be my turn. I wonder if all my hard work and hours of negotiating, time outs, and putting boundaries into place has made any difference? Do my boys actually care? Not today quite obviously.

So I sit and wonder and think and plan... how am I going to do this differently? How on earth will I get my children to listen? Will I ever feel like a good mom again? And I know I will, I am sure I will, but for now I want to weep a bit into my extra-strong cup of coffee and wallow happily in the silence while my boys are at creche.

No witty solutions. No happy endings. The end (for today).

Monday, August 12, 2013

Information-station


 


Last week we celebrated Malakai’s fifth birthday, which was a resounding success I must say! By success I mean that he felt loved, appreciated and validated on his special day – of course he enjoyed unwrapping his presents, but his face just lit the room up when we sang happy birthday to him first thing in the morning, and again at school, and again that night with family. My heart just swelled when I saw his pure joy – what a good day!

Malakai’s birthday is always a little bitter-sweet for me because it was also a day of total anguish. Instead of enjoying our little baby boy, we were enveloped in a sense of utter devastation when we received his diagnosis. I have never cried so much, and they were certainly not happy tears; although now I wish they had been.

I clearly remember that the only thing I knew about Down syndrome when Malakai was born was that people with Down syndrome apparently couldn’t pretend (which is a total fallacy by the way). Odd ‘fact’ really… Oh, and I knew it was a terribly bad thing, that my baby was somehow ‘broken’, and I was probably the one who had broken him.

Oh how little I knew then… and oh how lucky I was that a voice (eerie… yes) spoke to me in the days following Malakai’s arrival; a voice that told me that it was simply nuts that a blood test could tell me who my child was going to be. Only he could tell me that!

So it was rather fitting that the day before Malakai’s fifth birthday last week I was sent a press release about a new prenatal test for Down syndrome that is incredibly accurate and can be done at 10 weeks – so early that a termination could be done without any pain or any fuss…

Now don’t get me started on my views on ‘medical termination’ – they’re obviously very biased, and for good reason, I’ve lived it and I know much more than any medical professional. I know about the Real Deal of life with Down syndrome, while they know only cold medical facts, statistics and beliefs that a person’s blood can predict their future.

No, I am not going to talk about medical termination… and how everyone will feel one day when they’ll be able to prenatally diagnose autism or depression or alcoholism or bad breath or propensities to job hop… because that day will come… and then what? Should we just get rid of those pesky little problems as well?

And I am not going to get all emotional and talk about how this impacts me as a mother of a child with Down syndrome… and how I am frankly pissed off and terribly saddened that the world out there is getting so excited about a way to get rid of children like my own in quicker and more effective ways.

I am also not going to talk about being Pro-Life, because I truly don’t consider myself to be in that category either.

What I am going to talk about is Pro-Information.

I simply want to see couples making informed decisions based on accurate and up to date information. I can almost guarantee that once a positive diagnosis is received with this new wonder-test the couple will be surrounded by a bunch of doctors and geneticists and given a list of what is wrong with their broken baby. I don’t believe the parents are ever put in touch with a real family who live a real life filled with real love, real joy, real accomplishments and real proof that a life with Down syndrome is worth living.

If I imagine how little I knew of Down syndrome when Malakai was born I can thank my lucky stars he was a little beautiful and cherubic baby lying in my arms full of expectations of love. When I was told all the things that could be wrong with him, I was given the benefit of touching his soft skin, breathing-in his new baby smell, peering deeply into his startling blue eyes, and of course the voice that spoke to me… What about a couple who have no real connection to a 10 week old foetus? What about them? They have nothing to hold on to…

And so what, you may ask?

Well, this kind of new test has been available in the USA for some time and Down syndrome support groups who in the past would welcome between 8-10 new families a month are now opening their arms to only 1-2 families. There has been a 90% drop in the number of babies born with Down syndrome in some areas, which can only mean one thing – we can thank modern medicine for finally finding a quick and effective way of exterminating a whole group of people. And why? Because they can.

And here I thought the eugenics movement had been relegated to the history archives alongside Hitler’s master race, mass forced institutionalisations and sterilisations. But now, it is alive and well and being dished out without the most important ingredient – the information required to make an informed decision.

I believe that if given the chance to really see the truth of life with Down syndrome, someone somewhere would choose differently. They would choose the road less travelled, they would embrace a new way of seeing the world, they would relish as I have in cutting out all the bullshit of competition and expectations in favour of just being. Being loved. Being happy. Being real.

“Oh, I really wouldn’t like a child who gives the best hugs, loves unconditionally, says please and thank you with real sincerity, shares with abandon, dances everyday like no one is watching, makes friends, changes people’s mind sets, and is generally a child that I am so proud of that my heart could explode…” said no one ever.

 

*Disclaimer: I am not for one minute saying that raising a child with Down syndrome is simple or easy or all roses and sunsets – but the same is true for any child. I know, I have a typical child and a special needs child and they both challenge me as much as they give me utter joy and delight. What I am saying is that my children are worth it – both of them.

Wednesday, July 17, 2013

On Being Human


 
I am busy reading ‘A New Earth’ by Eckhart Tolle. This is my third attempt, and I have already had to force myself to pick the book up, night after night, on this last attempt. I can’t say why I’ve struggled so with this book. I can only think it may have something to do with my change in character from my teenage years where energies, reiki, spirits and astrology were very much part of life; to now, where I have my feet planted firmly on solid ground.

                It is not to say that those who believe in those things do have have their feet on the ground, or that I think it's a load of bull, it is rather that as I’ve grown older I’ve become in need of practical, down-to-earth, basic beliefs to guide me - like 'meat & potatos' kind of stuff. Perhaps it has to something to do with Malakai’s birth, where I faced a total shift in my perspective. I very quickly found I had to be responsible, do the right thing, and focus very much on my child’s physical needs.

                But I never really lost my previous belief-systems; they were just filed away for a period of time. And that time is now coming to an end; I am dusting off those old perspectives and beliefs. The reason for this is because I’ve also reached a point where I know that my mind is my greatest enemy, where my constant need to do, achieve, become and create is getting in the way of the stillness that has to come through. I have systematically shut off emotional well being in favour of mental prowess – and how could I not?

                I have spent the last five years researching, learning, finding and systematically assimilating hundreds of pages of research, studies, reports and findings into anything and everything that has to do with Down syndrome and the variety of ways in which it may or may not impact my child’s development. I had to do the right thing by my child. There was no time for my seemingly inconsequential feelings.

                But by shutting off my emotional well being I have instead created a well that is so deep and so vast – filled to the brim (and now spilling over) with feeling. It doesn’t take much to set me off in a fit of tears and unimaginable heartache. And to boot, I think I've overused my brain and thinking processes to the point where I suspect I've killed off a couple hundred-thousand brain cells. 

                Which brings me to ‘A New Earth’. I am forcing myself to read this book in the hopes that somewhere in there I will find my salvation. My balance. Myself. And yet, I suspect my mental self (which Eckhart calls the ‘ego’) has tried to stop me from reading (insert evil laugh... bwa-ha-ha-ha...). Despite this I’ve found the resolve to pick the book up again, and again. I am now halfway through and learning about the difference between Ego and Being (or Human and Being) and I had an epiphany last night that I had to share with my husband.

                Eckhart spoke of two things – of Doing and of Being; and of Human and Being. They are similar, so stick with me here.

                He explains that our Ego is addicted to Doing. We think that if we do enough we will eventually become enough. But the Ego never has enough; its desire for more is insatiable. And so we fill our lives with Doing-Doing-Doing and totally neglect simply Being (which is the link to our inner selves, our true selves, where we are One with everything). I saw myself so clearly in that analogy of Doing – because that is exactly what I’ve been doing for 5 years (excuse the pun). I have been Doing-Doing-Doing and nothing else… To the point where if I manage to complete a project, the emptiness that follows scares the hell of out me and I become depressed because I’m not Doing Something Amazingly Important! Ha!

                The next thing he discussed just about hit me upside the head and my first thought was of Malakai. Eckhart referred to all of us as Human Beings – the Human referring to Ego, and the Being referring to our Inner Selves where we are One with everything. He said that our journey on earth is to find a balance between being Human and simply Being. Because let’s face it, we will never be free of our Egos and our Humanness, but we can recognise it for what it is and slowly work towards the knowledge that this body, these talents, these limitations, these fears, these imperfections; they are part of my Humanness, but they are not ME… you see? Do you see?

                I thought immediately of Malakai and how his birth was my first true knowledge of this. I remember in the chaos, pain, disillusionment and tears of his first few days of life… I remember in all of that when the doctor brought me Malakai’s blood test – called a Karotype – and there it was, plain as day – “This patient displays triplication of the 21st chromosome in all 20 cells tested that is consistent with a diagnosis of full Down syndrome. Refer patient for genetic counselling.” There it was, bloody proof that our baby was broken.

                And yet, in all of that, a voice that felt as though it came from somewhere else and still rather strangely sounded like my own said, “How can a blood test tell me who my son is going to be? It can’t tell me if he’s going to like riding bikes, or painting, or singing. It can’t tell me if he’ll be outgoing or introverted. It certainly can’t tell me that he won’t love hugs and kisses, tickles and stories before bed.” I just knew, instantly, that a blood test could not tell me WHO Malakai was…

                And so, despite the fact that a blood test confirmed my son’s Humanness is flawed or broken or whatever… it does not take away from his Being - they are two different things people! Deep inside him is a Being, like me, like my husband, like you, like everyone else. And this Being is made no less by the virtue of the Humanness in which it resides... let me repeat that: And this Being is made no less by virtue of the Humanness in which it resides.


                In fact, Malakai couldn’t care less about petty pitfalls of Ego and Humanness - jealously, anger and bitterness - until Harlan came along and showed him how to throw a tantrum and how to hold on tightly to stuff – mine, mine, mine. Bless Harlan’s Humanness, for he is just like the rest of us and will learn in his own good time. Malakai only learned these behaviours from mimicking his brother, and in the very beginning he would share happily – until one day he realised that Harlan would take everything without stopping if he let him. Typical of a 2-3 year old, Harlan is selfish, demanding and learning to associate everything as being either ‘mine’ or ‘someone elses’, and the more he can organise for himself, the better.  


                But still, Malakai simply doesn’t prescribe to notions of socialising; the norms and rules and ‘expectations’ in this world. In this way I suppose his Humanness (his Ego) is broken, but we knew that already. And I ask you is it such a bad thing?
 
             I see Malakai as being more in touch with his Being, and with much more ease than anyone else around him – almost as if he has a direct line that is always open. And yet, the world that is ruled by collective Ego will look at Malakai and see a broken child, unworthy of the same rights to life, love, and relationships as the rest of us. Seriously, there are many people out there - many - that would prefer if Malakai and others like him never got the chance to take a breath, live a life, give and receive love. Why? Because they come in a broken package that magnifies the reality that our Humanness is essentially flawed - for some its an extra chromosome, for others its a missing limb, for many its addiction (to drugs, money, sex, power or whatever), and for all of us its the fear that we are never going to be good enough. But as long as we can all pretend that perfection in our human form is possible, as long as we continue to eliminate those 'irritating little mistakes' that our bodies betray us with, we can continue to believe the lies our Ego's present as truth.
 
              No, Malakai's Being is never far away, and most who meet my son will comment on how gorgeous he is, how happy he makes them – perhaps because his Being is having a secret and direct meeting with their Being; sidestepping the Ego altogether. He simply makes people happy, and yet the default Egotistical response to Malakai and others with Down syndrome is of pity or fear – and I have come to really understand what Jesus said when he was nailed to his cross, “Do not judge them for they know not what they do.” It's just an Ego-Thing.

                But like it or not, the Being is there and it essentially knows and understands that the package we come in – our Humanness – is just a shell. It is not who I am. It is not who Malakai is. It is not who you are either…
 

Tuesday, July 9, 2013

Perspective

The day Malakai arrived - 08/08/08 - moments before his secret was revealed
and our lives changed forever

So, as any respectable Type-A Personality with an additional Virgo streak will tell you, I have blog posts lined up, ready for publication... But I'm going to have shelve the post planned for today because as life would have it, I have a serious case of 'gotta-share-what's-on-my-mind-right-now-alitis' (please excuse the spelling on that one).

Since Malakai's birth and diagnosis, our lives have changed exponentially. And not just in terms of the time and money we spend on Malakai's therapies and doctor's appointments, sleepless nights and constant planning... It is our life-long commitment to do everything we can to let his light shine brightly in the dark spaces that hide between notions and concepts of 'worthy and unworthy', 'success and failure', and ultimately understanding more deeply with every moment that all life is worthy - deeply, profoundly and incredibly worthy.

I have in the past been approached by people brave enough to ask the question, "How does it feel? To have a child with special needs? How does the whole experience feel?" Sometimes it comes from a friend, mostly from a stranger, and on the odd occasion from someone who themselves are facing the possibility of a diagnosis.

The truth is I have never had an unequivocal answer - it changes over time, as any journey into parenthood changes, but perhaps the easiest way to describe being a parent of a child with special needs is ask that person to do something to their perspective that will dramatically alter the way the see the world around them. Walk around on your knees for a day looking up at everything, or stand on stilts looking down, or put on very thick glasses that magnify everything - whatever it is, do something that will profoundly change the way in which you perceive your 'everyday' world.

This is how it is feels raise a child with special needs - a profound change in perception. It is not horrible, or ugly, or unfortunate - it is just different.

Then, imagine trying to chat to your other mommy-friends about their children and their day-to-day happenings when you know that your perspective is utterly different to theirs.

Your problems are different.

Your dreams are different.

Your perspective is different.

And you can never ever change back. You can never un-learn the new way in which you see the world - it is with you for life, and for those reasons you will always see things a little differently than the rest of the world.

Is this a bad thing? No, I don't think so. Is it sometimes lonely? Yes, for sure.

Tuesday, May 21, 2013

Acceptance


Acceptance is like a gigantic onion – it is a layered endeavour that never fails to make me cry; firstly from sheer frustration and then from utter relief. Today, I am somewhere in between the two…

Disclaimer: firstly, let me say with unequivocal surety – I do not wish that my son didn’t have Down syndrome. I don’t want to change him. I love him so fiercely it feels like a suit of unbreakable armour. For him I would run headlong into a speeding train. Malakai is a delightful, loving and clever little boy who is also unbelievably kind and insightful.

What they don’t tell you about parenting a child with special needs – and what I didn't fully realise until recently (say... this morning) – was that there will be layer-upon-layer of acceptance. And I’m all for acceptance, because seriously, who wants to mope around forever wishing things were different? Not me.

The rub of course is that acceptance is seldom easy, and never pretty – well at least not in my world. And just when I think I've crossed one bridge and all is well, another bridge pops up. The key to remember is that these are bridges and they are designed for safe crossing. I will get to the other side. Luckily I'm not talking about massive, gaping, dark chasms (although sometimes it may feel like that).

We accepted Malakai’s diagnosis at birth quite easily I think, and his first two years were like a honeymoon. I relished in being Malakai’s mom. It was beautiful. Then along came Baby #2. Harlan brought with him not only nine months of colic and screaming, but he also brought with him everything that Malakai was not… I was suddenly faced with day-to-day examples of how my first son was not actually typically developing (duh... I know... it's hard to explain). That was a tough one. Acceptance Round #2 took about a year and a bought of Post-Natal-Depression. It wasn’t pretty, and I said and did a few things I am not particularly proud of today. But nonetheless, it is done and dusted – water under the bridge (see my clever use of analogy here?)

After another two years I am now facing Acceptance Round #3…

What I particularly love about being a parent is teaching my children what I think is the most important lesson for any human being – that their needs are important, but they are no more important than anyone else’s needs. This manifests itself in good manners, sharing and thinking of other’s feelings. My sons do all those things very well and it makes me so proud.

What Malakai doesn’t do though is listen… If he gets something into his mind, that’s it. He cannot let go of that impulse or thought. The result? A child that runs away when we’d like him to sit still; a child that sticks his tongue out at his teacher because he doesn’t actually want to go to school; a child that refuses to eat something he doesn’t like even if he is literally starving (and I mean literally).

For me, a child that listens is a well-behaved child and a child who doesn’t listen is a naughty child. Simple. Getting a child to learn to listen is process that takes a lot of reinforcement, setting boundaries and enforcing consequences when these boundaries are overstepped.

I have been diligently teaching my sons to listen, and in my mind up until now they were just two toddlers. This has all changed though now that Harlan has finally started to listen (at 3.5 years), and I have once again realised that Malakai is different. At almost five years old, he still doesn’t listen. I may as well be speaking Greek for all he cares.

This morning’s school drop was particularly difficult – not because it was any more hectic than usual. Begging Malakai to sit in his class and not follow me out, pleading with him to remember that he’s going to enjoy his day, and sternly admonishing him over screaming at his teacher because he wants to get out of the classroom almost the minute he enters it… all par for the course. But this morning was different because while I was begging and pleading with Malakai, another little boy in his class laughed at the spectacle. He laughed at Malakai. Of course, the other little five year olds come into their classroom, sit down and entertain themselves until the school day starts. That’s what typical five year olds do. Malakai’s difference hit me like a slap to the face. My son is different. I cannot expect him to behave like the other children. I can hope, of course, but I cannot expect…

And so, I now need to work on Round #3… Accepting that Malakai will behave differently. He won’t listen and hasn’t yet learned at five years of age how to control his impulses. I cannot expect him to be different from who he is, and this is simply a manifestation of his diagnosis. By expecting him to be different, I make him less-than. I make him bad. And he isn’t bad. He is a delightful little boy who has an extra copy of chromosome 21 – this makes him different in the way he develops and behaves.

So now what? My boy is different and it cannot be hidden behind being a baby or a toddler any longer. His peers see right through him to what makes him different from them. He sticks out. He is funny to them. How do I take my son’s hand and guide him through this new phase (the phase where everyone else moves forward and he stays behind for an indefinite period)? Do we stick with mainstream schooling because he deserves a life amoung other little boys and girls, he is worthy despite being different, or is this the time to move him to a 'special setting' where he will be surrounded by other differently-abled children? I simply don’t know yet.

First things first though – Acceptance. From there, all things are possible.
BY Loren Stow