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.

Super soggy days

Thank goodness Harlan loves his wellies (he even wore them right through summer in South Africa), because we landed in the UK and just as I remembered, this place is seriously soggy. And cold. And soggy.

Despite my excitement to finally be getting out of 'limbo' and to be reunited with my husband after 6 weeks apart, I was overwhelmingly distressed at the thought of our upcoming flight to the UK - all 11 hours of it - with two small boys who have their own Life Equation now (check last week's post for the long explanation)...

Good grief was I worried!

But thankfully the flight was overnight and so it actually was simply smashing (see, I'm practicing my Proper English) - other than the fact that Harlan kept asking when we were going to get in the plane and he still refuses to believe that we flew anywhere at all, never mind to the other side of the world...

"But sweetie look," I gesture around the plane, "this is the plane. We are sitting in it."

"But where is it?" Sulky face. "Where?"

"Here... right here. Like all around us," Ummmm, and now?

So, despite the fact that Harlan doesn't believe we went on a plane and flew anywhere we are all doing splendidly (see, Proper English again) in one of the most beautiful parts of the English countryside where there must be about a gajillion trees (all very very pretty) and even then there still aren't enough of them to drink up all the water in the ground, so wellies are a must!

I think we are kinda like Vaalies at the beach in Cape Town, running into the freezing water simply because it's a beach, but all the locals know its crazy freezing? Well, we are kind like that - bundling the boys in warm jackets, gloves and hats and kinda pushing them out of the toasty house and into the freezing cold to 'explore' and 'get out' and other ridikilus things!

Here is a little taster in pictures :)

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...

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 6^th 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.

"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!

"The Talk" part 1

So, I’ve been seeing an educational psychologist because sometimes I just don’t have all the answers, no matter how badly I’d like to believe that parenting is wholly intuitive and Love solves almost any challenge.

You see, while I understand that discipline is probably the hardest part of being a parent, I have a little conundrum – Harlan and Malakai just don’t listen, but for two very different reasons. Harlan is a stubborn little guy, and getting him to play along with anything that’s not part of his original agenda is practically impossible. And of course, the agenda of a 3.5 year old boy is often very far removed from the values that I am trying to instil in my children – patience, courtesy, thinking of others and so on.

And then there’s Malakai, who for all intents and purposes is functionally deaf. His auditory processing is so poor because of his Down syndrome that I can repeat myself a million times and he’ll still not listen. Add to that another factor that is common with Down syndrome – a poor impulse control – and I am like a broken record.

So. Two kids. Neither listen. Malakai for developmental reasons and Harlan because he’s seen and learned from Malakai that listening is not something we need to do…

Then the psychologist suggested something I have not actually thought of – and I’m not sure why it never occurred to me. She suggested we talk about Down syndrome and how Malakai lives by different rules…

Our conversation:

Psychologist: “Tell Harlan that Down syndrome means that his brother has a different set of rules to the rest of us.”

Me: “Ok. But I haven’t told Harlan his brother has Down syndrome. In fact… I haven’t told Malakai he has Down syndrome…”

*gulp*

It’s true! I have never told Malakai he has Down syndrome, and while I’ve mentioned in passing to Harlan that Malakai needs extra help with some stuff in life, I’ve never actually given it a name – Down syndrome.

Psychologist: “Oh, I see. Well I suggest you talk to both of them. It’s good to give Malakai’s learning difficulties a name. Show Harlan pictures of other kids with Down syndrome. Show him Malakai’s eyes, his hands, his feet, and other markers of Down syndrome. Then they can both understand why there are different rules for each of them.”

Me: “Um. Ok.”

Firstly, it brought back to me the day that Malakai was born and how the paediatrician pointed out all his markers. “You see here…” she said matter-of-factly, using her manicured finger to point out the physical features that suggested Malakai had Down syndrome, “Here on the inside of his eyes, that fold? And here on his hands, a single crease? And here on his feet, a large gap between his big toe and the next? And see how short his fingers are…”

Ugh!!! I hated to see my child as a set of ‘physical markers’… he was not an encephalitic fold, he was not a single palmer crease, he was not a sandle-gap, and damn-it, my fingers are very short and stubby! So, from that day I ignored these features, except in moments where I would secretly glance at them, a reminder of my son’s different-ness. But we never talked about them, because what the hell for?

Until now, like a dork I needed to be told by my children’s psychologist that I need to have ‘the talk’ with my children. And I am not sure why I never thought of it before? I suppose it may have something to do with the fact that we not only choose not to, but we really and truly don’t see Malakai as that different from his brother or any other kid for that matter. We are not delusional you see, and of course we see he’s delayed in many areas, but he’s just not that different. He’s just Malakai to us…

But I understand that this attitude may not be the best when it comes to setting rules in our house – rules being an important part of parenting. Expecting Malakai to follow instructions when he clearly struggles with this is unfair of us, and because we instinctively know this, Harlan sees how we compromise. Then, Harlan - being the industrious little boy he is - takes this as a sign that listening is simply not that important in our house, and we’re left with two kids who don’t listen and one mom who is about to hit the roof out of sheer frustration.

So, we’ll have to have ‘the talk’… I am just not sure how I’ll actually do it, and if I’ll say the right thing… Heaven’s alive, I hope I say the right thing!

 

Blindsided

I knew it was just a matter of time.

 

And yet, I didn’t see it coming.

 

I knew it would happen one day, and it is something I haven’t yet planned for because, well, I didn’t actually want to think about it.

 

The day that my kid would be targeted as the odd one out. The day that they notice – the other kids I mean. And the day that they not only notice, but act and react to my son’s differences in a way that is just not cool.

 

I knew it was coming.

 

And yet, when it happened the first time I reasoned it away – oh, just typical kids fighting, playing rough, nothing a little bit of guidance (or a time out) can’t fix. The second time was disturbing, like I was in a dream and I couldn’t run away from the monster chasing me, slow motion heart beat in my ears kind of thing. Immediate punishment with time outs was ordered, and there I thought I had nipped it in the bud.

 

The third time (and please note that this has all happened in a matter of an afternoon) I am dumbstruck. Just dumbstruck. And hurt, yes. And hot headed. And confused. And scared. And angry. And pathetically trying to plead with them to include my son – trying not to sound desperate.

 

And to top it off, one of the perpetrators of the nastiness is Harlan. I cannot believe it, I thought that we had a good thing going with the boys, I thought that Harlan would always stand up for his brother, I thought that they had something special. And here Harlan throws Malakai under the bus, in a way that is cruel and mean… I stand for Malakai with a fierceness that was born the day he was, a fierceness that says that I will do anything for my son, and there I stand facing my 3.5 year old son and wonder how he could have taken part in this shaming of his brother?

 

It is so difficult to keep calm and level headed, guide and speak and empower when all I want to do is grab these tiny terrors and slap them. But I have to keep a level head about this, what I do now will matter greatly in the way in which our family goes forward – so there is no time for my pain, my fear, my anger and my sadness… 

 

I knew the day would come – I just didn’t know that it would be this complicated.

 

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.

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).

It's lickalicious ;)

Having a child with special needs brings with it many moments that require instant 'think on your feet mode'. Yes, I know that this is the case with most children anyway, but trust me... a child with special needs throws in just a few more volts of WTH???

As Malakai has grown older, the differences between him and his peers have become a little more pronounced. While he can rock his numbers, colours, shapes, animals and nursery rhymes with the other 4-5 year olds, his social skill set is somewhat different (read: strange).

A really good example of this is his 'goodbye ritual' - a really good lick, right up the side of the face, followed by a downright glowing smile. I've tried to explain to Malakai that there are many ways to say goodbye, and licking is not at the top of the list, but to no avail. I've tried saying no, ignoring, reprimanding, and modeling appropriate farewell behaviours with our entire collection of fluffy toys, all lined up, but no, nothing has yet convinced him otherwise.

So now I simply brace myself to have my hastily applied foundation removed by an exceedingly well-delivered lick when I drop him at creche. It's ok, I tell myself, it's just a phase...

However, when I fetched Malakai recently and he came running over, hand-in-hand with one of his few friends, I was overcome with emotion. How sweet that my son has a friend, and sweeter still that this other little boy has taken the time to bond with a child who struggles to communicate, does inappropriate things at times and still wears nappies.

As they came running towards me, hand-in-hand, happy music played in my ears while my eyes burned a little with threatened tears. Aaaahhhh, my son has a friend despite all the things that make him different. Everything is well with my world... and then... LICK.

Oh the look on the poor boy's face as he came in for a hug and instead got a face full of saliva... Well, it was more than a little shocked, with some insecurity and perhaps even a twitching eye thrown in for good measure.

Think on your feet Loren, think woman! What on earth do I say to this little boy without making my child feel socially inadequate?

I wish I could tell you that I said something really witty, that made the whole thing totally acceptable... but I didn't. I simply whispered an apology to the little boy, took Malakai by the hand and got the hell out of there. Of course I tried to explain to Malakai that licking his friend goodbye was not something that his friend enjoyed, but he's still a licker.

I realised that day that while Malakai throws me seemingly insurmountable curve balls that knock every rational response out of my head, but he's actually just fine. In Malakai's world licking is the in-thing, muchos-coolos, totally ok... I am the one with the social issues that turn me bright red with shock and horror, not him.


BY Loren Stow