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.

For what it's worth

This whole thing? Moving my family to another country in another hemisphere. Leaving everything we know behind… is it worth it?

                This has been the most difficult thing I have ever done in my whole life. Difficult in ways that I cannot even describe in writing – or rather in ways that I don’t want to revisit through writing. But the short answer is Hell Yes.

                If I have to start describing how amazing Malakai’s school is, and how wonderful Harlan’s preschool is – I could carry on for days. At times the attention that Malakai receives, the effort that is made for him by people that are essentially total strangers – it’s overwhelming. I cannot believe that they would do so much for him and for us? And why don’t I believe it? I don’t know why – is it the way I was raised, the country I’m from, my experience thus far? Is it because in South Africa I had total control of his therapies and interventions and here I have no control, so I have to allow others to do what I cannot do? Perhaps…

                But it is just incredible.

                Malakai has a class teacher and teaching assistant, but then he also has three support workers who work at different times of the day and week so that he has constant one-on-one attention. His class teacher plans his lessons and the support workers implement it. Malakai has his own work station and they give him a very visual approach to learning. He spends as much time as possible with the other children in the class and has made friends! There is Hassim and Joe, Lilly and Milly, Maya and Henry, Tom and Ben… We even went to a birthday party last week (Henry’s) which was awesome! A few times in the last week Malakai has walked his friends (usually Lilly or Milly) to their car holding hands. I mean seriously!!!! I can die from the cute-factor!

                As for academics, Malakai can now write all his numbers and has learned to recognise, say and sound out M, S & N. They sing with him. Dance with him. Read with him. Exercise with him. Laugh with him. Love him. Accept him. Want him… and it feels so good it hurts.

                As for Harlan – who unfortunately tends to take a back seat in this blog, but definitely not in real life I promise! – he has made me so proud. He has walked into a new preschool, filled with new kids who speak a little funny and eat a little funny. He has done all this in a way that the teachers have asked, “And you said Harlan was shy?” and I know he’s shy! Believe me! He’s been so brave, so smart, so wonderful. Have I said yet how proud I am of him? It has not been easy for any of us, but I think least of all Harlan, and he has really been a brave, brave boy.

                So, yes. It’s been worth it.

A whole lot of newness

 

Happy New Year!!!

Ok. So I have never been the best at hitting at the nail on the head when it comes to New Year, I have always been a bit slower on the uptake and this year is no exception to that rule.

So, it's already February and I'm wondering where the time has gone? Wasn't it just Christmas? Good grief!

But I forgive myself (for once) because life has certainly been a crazy mish-mash of newness at every turn; immigrating to a new country, on a new continent, in a new hemisphere will do that to you!

Getting used to life in beautiful Surrey has been interesting, gut-wrenching, uplifting, terrifying and totally satisfying all at once. The tough bits are all about missing home, about looking out the window to face yet another day of drizzle, about craving an Ouma rusk with every fibre of my being, about wanting to reach out and realising the person I want to reach out to is not just down the road anymore. Yes, there have been tears.

But then I am faced with the glorious bits; driving through the countryside past farms and tiny villages to drop my children at their respective schools, really being dumbfounded at the prettiness that reveals itself around every corner, being pleasantly startled at how well the bureaucratic machine turns in this first world country, and of course... the children.

I am so stinking proud of my boys. Harlan has been a champion of a boy, walking into his new school and settling in with such bravery despite the fact that I know it was difficult for him. I know he was scared, I know he was nervous, I know he wished he didn't have to do it, but he did and he's happy now and I am one proud mama.

Malakai's school has been incredible, gently guiding and supporting him through the process of settling in. He has made incredible strides in understanding a whole new system and has gone from being allowed to run amok to sitting in his class alongside his classmates. This may sound small, but in Special Needs Parenting Land, this tiny step takes on Epic Proportions, trust me... I am so stupendously happy with this school that I actually find it difficult to put into words what they are doing for him... and in turn, for me.

So yes, I am a bit late for the New Year. But trust me, the New Year has been the last thing on my mind. Now that I'm all caught up and officially residing in 2014 in both body AND mind I am looking forward to everything it has to bring.

Photo credit: www.surreyhills.org

What I know for sure

  

When I was younger I thought I knew a lot of things for sure, and such is the natural and inevitable bravado and confidence of youth. Failure is almost never an option, or even a reality, as our lives are held up and supported by those who come before us - parents, grandparents, teachers and anyone else who has a vested interest in giving us the belief we need in ourselves to take on the big wide world with a fighting chance one day.

 

As I've grown older there are many things I am not so sure of anymore, and I've realised that some of the most difficult things to do as an adult are those which you are not guaranteed the outcome of. You just do it because you must, or because you think it might work, or because you are trying your best. The result you want is not promised, and sometimes your heart is broken. Plain and simple. Life happens, as they say.

So when we decided to immigrate our family from one hemisphere to another based on the belief that both our sons' deserved the opportunity to attend mainstream schools, that it was within our reach to drop our children off at the same school gate each morning, that Malakai belongs with his peers because he's a little boy just like any other little boy - or that he at least deserved the chance to mainstream... all these beliefs that we held onto (and that South Africa couldn't offer us) led the biggest decision we've made for our young family. A move that cost us our life savings, not to mention the priceless loss of leaving our family, our friends, and the home town we've known all our life. Even though we thought we knew what we were doing, we weren't exactly sure how this move would change our lives and if we would end up getting what we so wanted for Malakai and Harlan.

Until we did.

Because we sure did, and I now I know for sure. We made the right move. We did the right thing. Our choice gave us the result we so dreamed of, and even more.

To give you an idea - the letter below is from the Special Education Needs Coordinator (SENCO) at Malakai's new school. This letter followed our first visit to the school once we arrived, where we were shown around and had a meeting with the principle and SENCO.


Dear Loren,

I hope you and your family are settling in well and looking forward to Christmas in Surrey.

Since we were last in touch, we've been advertising for extra special needs assistant support with the view to Malakai having full time 1:1 support. Malakai will be in a Year 1 class with his peers but also have the support he will need to help him access the curriculum at his level and the flexibility to use resources from the Reception classrooms (if you remember how excited he was to try out the bike on the playground!). We feel he will also need some support in the first instance due to his toileting needs and to ensure his safety as he appeared a little flighty on his visit. The advert states that the support is for a Year 1 child with Down syndrome (but does not name Malakai) this is in order to attract people with either experience of working with Down syndrome or people who are willing to learn about working with a child with Malakai's needs. We hope to make an appointment in the first week back after Christmas and aim to start Malakai in the school week of the 13th of January.

The educational psychologist would prefer to see Malakai in our school environment and would like to come in during the first week. No date/time is fixed yet but I will let you know when it is. She will start to assess Malakai's needs and this will feed into the satutory  assessment process which Lauren has sent you a leaflet about. Initially Malakai's support will be paid for from our school funds and once he hopefully gets a Statement of Special Needs additional funding will become available from County.

If you are available then Malakai's class teacher (Mrs Kernot) would like to see you at school next Tuesday. This will be an opportunity for Malakai to look around again and take any photos you might like (Mrs Kernot is also hoping to take photos and put a book together for Malakai). During the visit, we hope Malakai will be able to interact with some of his new class friends and Mrs Kernot is planning some playbased activities. Mrs Kernot is looking forward to meeting you both.

I imagine you've learned so much about Down syndrome as Malakai has grown up and for most of our staff we are at the beginning of the journey. If you have any resources you feel are helpful please let us know. I've been in touch with the Down Syndrome Association who have a great website and give support to schools and families. We also have two special schools locally who have outreach teams who work with us mainstream schools to develop our knowledge on different special needs. There are also some training opportunities coming up in the spring term from the Down Syndrome Association which we hope to attend. The educational psychologist will also provide us with support tailored to meet Malakai's individual needs.

We are a dedicated staff and will do everything we can to ensure Malakai is happy and safe, in a stimulating learning environment.  We look forward to your visit. Many thanks and best wishes.


When I got this email I was left speechless - literally. I didn't know how to respond, what to say, where to even start. I was dumbfounded at the level of interest, care and attention they had given my son. MY son!

We did visit, and it was yet another example of their sincerest hopes to give Malakai the best. We were welcomed by Mrs Kernot (who's wonderful by the way!) and two little ones from Malakai's class. They gave us a school tour (again) and took photos all along the way. Malakai was totally smitten by everyone and wherever we went in the school the teachers and support staff seemed to know who Malakai was, greeting him with warm smiles.

As promised, Mrs Kernot did make a book for malakai and she and the SENCO actually dropped it off at our home and came in to say hi to Malakai and meet Harlan. Dropped it off!!! Seriously...

So, what I know for sure is that we did the right thing. We made a good choice and the promises are like big warm arms enfolding us and saying 'you did good, well done'.

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...

Touching South Africa

So it turns out I found my way to say goodbye to South Africa, and it was sweet and it was poignant and it touched me, marked me... and that makes me happy.

There is this little place called Clarens, nestled in the foothills of the Maluti Mountains that mark a line between South Africa and the mountain kingdom of Lesotho. Its become awfully popular as a tourist destination over the last decade, and no wonder, it's pretty much breathtaking scenery and small-town feel is a haven for artists, writers, young lovers, and happy families.

But I look at Clarens through the eyes of an 11-year-old girl, or at least that's the age I remember it with most clarity. My family used to spend most holidays in Clarens at the house that my father's business partner owned in the small village. I walked the dusty streets, attempted to climb the mountains, and made good and fast friends of the local children when Clarens still had only a single restaurant, a post office and a general store. We enjoyed Clarens in the summers when it was lush and green and warm, and we enjoyed Clarens in the winters when it was one of the very few places in South Africa to be blanketed in snow. But it was the autumns that were most beautiful, with the golds, reds, yellows and browns turning the landscape into an oil painting.

I remember how much I loved Clarens, it's beauty, it's scenery, it's energy that was almost magical. Even when we used to arrive after dark, my parents knew to wake me up if I was sleeping so that I could see the glowing sandstone outcrops as they towered high above - then I knew we had arrived. In my young mind anything was possible in Clarens, no dream was too big and no day was long enough... I fell in love with the earth, the land, and to this day I feel a spiritual connection to the place, which is why a short trip to Clarens with my parents and the children felt like a homecoming... and a home-leaving.

And it was magical. And it was cathartic. And it was a rare moment in the past six months where I was actually able to sit and really drink it all in... no - I am corrected. It was more like sucking the marrow from a bone... every. last. drop. I was able to sit on the patio in the evenings and know 'this is the last time' (in a very long time) - the last time I will enjoy such majestic South African sunsets, still warming my skin as the last of the light fades. I was able to sit by the poolside and watch my boys splash around in the kiddie pool and know, 'this is the last time' (for a very long time) that they will be able to enjoy water like this, with the sun turning their skin brown, splashing and shouting Look Mom! Look at me!

Aaaahhhh - Clarens was good to me and my family, as she always has been.

"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.

 

Closing the door

Now is as a good time as any to just come out and say it - weareimmigratingtotheuk...

I can't say why I don't want to talk about it - am I embarrased? Do I secretly think people who immigrate are cowards? Do I feel like what we're doing is unfair? Well, yes and no.

I have avoided the subject of our impending immigration because I don't want to face the reasons we are leaving, or at least not out in the open for everyone to see and judge. I feel safer keeping our reasons to ourselves and avoiding the whole damn thing until I say one day 'Cheers! See you later!'

But of course I have to face the reasons, and share them. So I will try to do just that in this post.

We are immigrating to the United Kingdom in an effort to give Malakai the support, intervention, possibilities and freedom that he simply cannot get in South Africa.

There. I said it.

I love my country, I love the people, I love the big skies and the weather, I love the Any Day is a Braai Day attitude, I love the way those who have nothing give more than those who have everything, I love my black friends, I love my Afrikaans friends, I love my Indian friends, I love the way South Africans see possibility, connect and move forward. I love the fact that we have the Big Five and the wild landscape because where on earth can you get that other than Africa? I love melktert and niknaks. I love biltong and Mrs Balls. I love so much about my country.

What I don't love is the way in which mothers have to tie their mentally handicapped children to poles in order to keep them safe from wandering, because they simply have no other choice and no other support.  What I don't love is the way that one day our government preaches about inclusive education and the next they're back stepping like Michael Jackson doing the moonwalk - do they think I get my child ready for inclusion in a matter of days or weeks, well Mr Minister of Education, it takes years!!! His whole friggin life so far, in fact! What I don't love is the way in which our private schools will not accept my son because he has special needs and their sole focus on the 100% pass rate which drives their fees and profits up, up and away... What I don't love is the way in which our special needs organisations are fragmented, demi-god-like information-nazis that want to control the very people they serve. What I don't love is the way that I have to downgrade my son's therapies to a minimum because I simply cannot afford to pay his therapy and medical bills, seeing that I receive absolutely no support - financial or otherwise - from the country to which I hand over my hard earned money each and every month.

Wow - that was a load off! *exhale*

We have chosen to go to a place where families like us are supported, where they understand we are a little more cash-strapped than normal, where my son will be swept into a river of tried and tested policy and procedure like a leaf that hits the water and floats along supported by the current of 'what is'. I am tired of fighting and forging ahead like a modern-day special needs voortrekker. I just want to slide into a comfortable place - one where I know my son is going to get everything he so deserves, and not because I've demanded it or begged for it, but because it is the way things are. Simple.

However, I have this kind of 'quitters guilt', like I should be sticking it out in a country with my fellow special needs families, fighting and making this place better for our children and all the differently-abled children to come. Surely I should be ashamed to just cop out like this - and I certainly do feel my cheeks flush. Which could explain why I've held the news of our immigration so close to my heart, revealing as little as possible until the last possible moment.

Unfortunately, the way forward for special needs in South African is rather overgrown, and a path needs to be beaten into shape by the feet of hundreds if not thousands of families - and I have to ask myself, do I try to make a difference for my country or do I try to make a difference for Malakai?  Because I know if we stay, we will not be able to give Malakai what we could in England.

I choose my son.

It's the small things

I was reminded recently of the small ways in which parenting a child with a special needs differs from parenting a typical child – because for the most part it’s really not that different if you take away the initial shock of the diagnosis, the weekly therapies and other developmental challenges.

            But I would like this blog to act as a kind of a window into another world – a map if you will to a road less travelled (although that’s kind of an understatement because there are so many parents out there who are raising, loving and truly enjoying their children with special needs).

            But as I mentioned, I came across another small difference the other day that I wanted to share. I read a story of a mother of a child with autism in the USA who was arrested for attempting a murder-suicide (herself and her child). Now, I cannot for a minute profess to know why she did it, or even contemplate how this decision could be condoned in any way, shape or form – it’s just profoundly unacceptable.

            However, this was a woman who was an active advocate for her child, who had a massive support network in the special needs community, who was outspoken and blogged about her experiences. And yet, she got to a point where she burnt out (I have read somewhere that raising a child with profound special needs is not unlike being in combat for weeks, months and years – and that these parents can succumb to a condition that’s very much like combat fatigue).

            The point of the matter is she had enough and felt she couldn’t continue, and yet she didn’t choose to end only her own life, she wanted to end her child’s life as well… and this is where I noticed the difference.

            I have never been at a point where I wanted everything to end, not by a long shot, but I sort of understand the feeling that I cannot leave my son behind. Unlike other parents who wish and pray for their children to have long lives, and I feel that way about Harlan – I simply don’t feel that way about Malakai.

            Of course I want Malakai to have a long and fulfilling life, but I don’t ever want to leave him – I don’t want die before him. I feel totally responsible for him for the rest of his life – and in order to do that I need to outlive him. Now, whether or not I will outlive Malakai is another story altogether because I know better than anyone that life has its own ideas – but I start to breathe a little faster, my heart gets a dull ache, and I begin to worry at the thought of what will happen to my son if I am not there to care for him personally.

            There are places for people like Malakai – called ‘homes’ – but they’re not that. They cannot offer Malakai the love and attention that I can (that only a parent can). And so the thought of Malakai’s life after I die is a scary and worrisome prospect for me.

            As a parent of a child with special needs I do not wish my son a life without me. I simply don’t. Maybe I’m selfish, but I don’t think it’s that – rather I think it’s a deep question of whether a world that so happily wants to terminate babies with Down syndrome take proper care of the child I know and love and truly believe is worthy of this world and his life? If being different from the rest of the world is so undesirable then surely he’s safest in my care? And there isn’t a mother alive (of a child with special needs or not) that doesn’t burn with the desire to keep her children are safe at all times?

 

So while I don’t condone a murder-suicide on any level, I can understand how that mother was unable to leave her child behind. For whatever reason (perhaps reasons that echo my own) she couldn’t imagine her child’s life without her, and yet she couldn’t imagine her life at all.

A hat and redemption

As if to remind me that I am in fact doing a better job of parenting than leaving my children to be raised by wolves, the night after writing this post I sat back and enjoyed the most beautiful performance of my life.

After dinner and bath Malakai disappeared into the room and returned to where we were all sitting in the lounge, with a cap in his hand. He instructed us all to be quiet and then donned the hat and started to act as if he was riding a horse - hilarious and very cute! He then went on to pretend he was a frog, a cow, a dog and more.

Now, anyone who knows Malakai will also know that he loves to perform - he is really and truly designed for a life on stage without a single shy bone in his little body! And this after my admission on previous occasions that one of the very few things I thought I knew about Down syndrome was that people with the condition couldn't act or pretend. Seriously? What a ridiculous thought, I know - but nevertheless it was one of my previously ignorant beliefs.

And it struck me how much I've learned about Down syndrome since Malakai's arrival - sometimes I learned new things just by chance, through reading articles that I came across, books, blogs and the like. And other times - let me honest here - I 've researched obsessively into the wee hours of the morning, consuming huge amounts of information, study results or whatever I could get my hands on. This tendency to obsessively research was usually the result of not finding someone who could help me with a particular problem I was having with Malakai, and at other times a result of being told that I was overreacting about something, so I suppose on the one had I researched to find answers and on the other I researched to find redemption.

I wouldn't necessarily return to the doctor or specialist and tell them that I was in fact not breaking my child or overreacting, but I would at least be able to sleep that night knowing that I was doing my best, that Malakai's development and future was safe in my hands and that no harm could come to him because of ignorance... not on my watch.

Because you see, Malakai is precious, he is beautiful and he is wonderful. He deserves the best and he deserves to be given the best shot at life considering he's already got some real challenges to deal with.

But I digress from the performance...

So after we enjoyed watching Malakai's performance (and here's what I love so much about him) he wasn't content to just call it night - oh no. He called everyone up for their turn with the hat and he would sit in their seat and direct - sheep; dog; cow; horse... We each had a turn to wear the hat and perform to the applause of the room.

Now I don't know where he learned this version of charades from - or if he came up with it all on his own - but it was a poignant reminder of how clueless I once was, tempered with the redemption of just how much more I know (and get to enjoy) now.



 

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).

The sanctity of naptime

 

With two small boys born a very short 18 months apart I am often asked by strangers in shops, at sporting events, or in restaurants if they are twins – to which I respond with a little snort and a single raised eyebrow, “No they aren’t… but they may as well be!” I can’t see why people think they’re twins because they’re quite obviously different sizes, perhaps it’s their matching fair hair and startling blue eyes that does it.

 

The point of the matter is that although they are 18 months apart, they may as well be twins because whatever the one does the other one wants to do, it really is a case of Monkey See Monkey Do in our house. And while this is terribly cute and terribly sweet, it is also terribly challenging and terribly tiring most of the time!

 

Our days are never quiet and they typically start at 5:30am when Malakai’s body clock goes off, and there is no snooze button on that, let me tell you! We never sit still. We are always on the move and when we’re not in the safety of our own home (which has been Stow-Boy-Proofed), I have to be on high alert and watch the two boys constantly. Of course this is getting easier as Harlan gets older, but Malakai is still in the developmental phase that is strongly characterised by unmitigated, fearless, crazy-as-hell exploration!

 

And now they are both realising just how much fun life can be when they team up and attempt a Great Escape. I often have to wonder what a fly on the wall would think when I drop the boys off at crèche in the morning – I won’t lie, some mornings I’ve aged by 5 years in about 15 excruciating minutes… From Harlan hanging off my pants (I know to always wear a belt now) to Malakai’s ritual lick up the side of my face, I am less bothered these days and have thankfully slowed my aging process a bit.

 

But I am still often caught in a split second decision to run after Malakai who’s aimed himself like a speeding bullet at traffic, or a body of water, or whatever other death-defying situation is facing him and Harlan… Mostly I pray like hell that Harlan will stand completely still and heed my calls to ‘Stay there Harlan! Don’t move! Mommy is coming! Stay ok!’ as I do a very unflattering sprint – my cheeks flapping up and down, my not-so-firm-mommy-boobs pushing my hold-it-together-mommy-bra to its limits – to catch Malakai who at this point is laughing his head off at the sight of his mother…

 

So, back to the point of this post…

 

Nap time. That beautiful time of day where all is silent and my children are guaranteed to be safe and sound for at least 2 hours. It is sacred in our house, and as such we treat it with great respect…

 

Thou shalt not venture out between the hours of 12:00 and 14:00

Thou shalt not book any activities or agree to any socialising in the middle of a day

Thou shalt not open the door to any visitors between the very same hours

Thou shalt not mess with our nap time, ever, unless you want to a can of whip opened on your ass

 

And friends always say, “Oh I wish my little one still napped in the day!” to which I respond with another snort and single raised eyebrow, “Do you think my children want to sleep? Re-eeeaaaaa-lllyyy?” Of course they don’t! My children don’t calmly walk up to me and request a little shut-eye… never gonna happen!

 

Instead we beg, threaten and bribe our children to close their sweet little eyes and let mommy and daddy sit for a little bit. Yip – nap time is our saving grace, our little window of sanity, our ‘happy-hour’ and I don’t even want to think of the day that we actually do have to give it up… Hopefully its far, far, far in the future!

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.