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.

Roadtrippin'

Nothing beats some time off, a change of scenery, and a good old fashioned road trip. Boy I love it!

The drive from Pretoria to Durban, leaving before the birds start to chirp, watching the sun rise as you leave Johannesburg behind you... it is something that nourishes my soul like a bowl of steaming vegetable soup warms my body on a winter's night.

Gliding along the vein-like roads that cover the land between my home and the South Coast, I feel as though I am crossing God's land - because in my mind God has never lived in a church, or in a book, or even in my heart - for me he lives in the land itself. In the fields, atop the glistening bodies of water that nurture the animals, radiating from the softest hills to the most jagged of outcrops. When I go on a road trip I encounter God.

Then of course, at the end of the road trip is the seaside holiday. And what I love most about the sea is the simplicity of it's never-ending entertainment. My children can spend hour upon hour at the beach and never tire - it is like nature's way of saying 'come, let's play!' And boy did my boys play!

Oh how I loved our roadtrip!

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.