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.

Happy World Down Syndrome Day

It is that time of year - World Down Syndrome Day.

I really hope that my journey and Malakai's story has made a small difference. In fact, I know we've made a little difference out there. And for that I am grateful. To have a greater meaning to my life has possibly been the most profound gift Malakai has brought me. And I love that boy - I can't describe in words just how much. But boy he is like my heart, beating outside of my body.

I found this video and thought it was really apt to share on this day - it is beautiful.

Happy happy peeps!

Bleh... *sniff sniff*

Ok, so the entire lot of us has been sick for weeks now. Good grief, what a horrible time.

 

Coming from deepest darkest Africa I kind of thought we were immune to most bugs and viruses, but they obviously have some ancient cooties happening up in here because we have not been this sick in years. As soon as one of us gets over it, we pass it around again.

 

Getting better in the UK is very different to South Africa. In SA I would just take myself and the family off to the doctor down the road who would probably over prescribe a million different things which would make me feel better – even if it was just masking the symptoms - because that's what I paid a fortune in medical aid for dammit! Here the NHS is great if your leg is chopped off, or if you’ve fallen off a bus or something. They are not so great if you’ve got the flu. And the chemists are even worse.

 

The doctor just won’t prescribe antibiotics if you aren’t half dead, and even when they do prescribe antibiotics, they leave the pain meds up to you. Problem is, the chemists are too scared to give you any medications, even if they’re over the counter. In fact, even if they’re on the flipping shelf in the middle of the garage down the road – they will still bulk at giving it you. Don't believe me? One day I went to get an enema for Malakai (we sometimes have to use them to help with his constipation, so I've administered them several times). I usually buy them on the shelf in Clicks, but couldn't find any in my local Boots. So I asked the chemist who told me that they wouldn't give me an enema without a PRESCRIPTION! Seriously? It's water and glycerin in fancy bottle! But no...

 

I have never had to deal with feeling absolutely crap constantly with absolutely crappy, snotty, grumpy kids as well and have no one I can turn to. Boo Hoo!!! It’s been a total mind shift for us and I just hope and pray we get rid of these bugs soon – short of spraying the entire house in a bacteria-killing mist…

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.