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.

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'.

"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.



 

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.

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 21^st 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…

 

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.

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

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