Freakin' Fantastic Folks... Friday!

What I think I love most about technology is the new stuff you get to see that there was no way could ever have been seen years ago before social media. I love seeing how creative people can be, and I definitely love it when they're parents.

These dads are awesome! They pretty much let their kids write a 'movie' and then acted it out for them... It is far more hilarious than it sounds and I just love it!!!

Also... I am left wondering what the hell I'm doing wrong because who's got the time to actually do these kinds of things?

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.

Say whaaaaat?.... Wednesday

Harlan was having a million temper tantrums the other day... so by the time we got to bedtime I was all too eager to get the boys straight to sleep and forget about any story time! 

Me - there is no time for books tonight.

Harlan - just one book mommy...

Me - (giving Harlan a sideways glance, secretly happy that he loves reading so much)

Harlan - Mom, just take a deep breath!

Freakin' Fantastic Folks!.... Friday

I love it when people come up with super creative ideas, and I love it even more now that these super cool people can share their ideas with the world as easily as clicking a little 'share' button.

Better yet is when the super cool creative people are parents who refuse to let their brains turn to mush after days and weeks and months of sleepless nights and toddler tantrums. Somehow their minds are saved, and they come up with such brilliant stuff!!!

I give you DINOVEMBER!

Ok, ok, I know it's February... But just look at what these parents do every November for their kids. It is fantastic and amazing and freakin' fantastic folks!

Follow this link:

https://medium.com/thoughts-on-creativity/6f4cb1886d41

They also have a Facebook Page

https://www.facebook.com/dinovember

Now that just puts a smile on my face :)

Say whaaaaat?.... Wednesdays

While out the other day at our local country park, the boys were simply fascinated by a golden retriever that was running full speed into the freezing water to fetch a stick...

Harlan - I want to swim too mommy!

Me - Harlan, it's far too cold to swim my boy!

Harlan - (after some thought) One day when I'm a Dalmatian can I swim in the pond?

Me - Sure Harlan, when you grow up to be a Dalmatian you are welcome to swim in the pond!

Freakin' Fantastic Folks... Friday

Ok, so this week is a cheat. These are not quite parents (scary, I know...), but this is such an incredible script that I think every newly born baby should hear, on a daily basis, until they turn at least 16 years old!

I am a huge fan of Soul Pancake and Kid President!

Say whaaaaat?.... Wednesdays

At Burger King the other day (yes... we are those kinds of parents, stop judging!) the kids are wearing their paper crowns:

Harlan - Mommy I'm a king!

Me - Yes Harley, you are.

Malakai - Me king!

Me - Yes, you and Harley are both kings.

Harley - Mommy, let me tell you something (pulling me closer...) you are a girl king!

Me - Thanks my angel!

Five day forecast

Monday – rainy

Tuesday – wet and rainy

Wednesday – windy and wet and rainy

Thursday – freezing and windy and wet and rainy

Friday – horrible and freezing and windy and wet and rainy

 

I now understand why British people are obsessed with the weather. It’s on the news (and I don’t mean only the weather bit of the news mind you), it’s on social media, it is on everyone’s minds and in most conversations. “How terrible is the weather? Yes… I know… ghastly! Is it still raining? Can you believe the rain? Floods everywhere…”

 

They have a real point though, because the weather is really awful enough in the UK for it be the topic of conversation, because there comes a moment when you look out your conservatory (built to harness the heat from the non-existent sun) and think to yourself “I simply cannot believe just how crappy the weather can be. Really. It seems almost surreal that weather can be THIS bad… but it is. There you have it. More rain. More wind. More freezing temperatures. More misery pouring from the sky onto us poor folk down here.”

 

The weather in this place is news worthy, of that there is no doubt.

 

Personally, I must say I like the rain. Nothing beats this weather for a cuddle on the couch with a good book and an even better cup of coffee. But that’s not my reality! I have two young boys and who want to play play play, and who until four months ago, lived outdoors. They’re now stuck inside with nowhere to go. Bored and listless. Peering out the window at the slightest hint of sunshine, only to be disappointed when the dastardly clouds steal it away from them the next moment.

 

This weather sucks. It really does. What I would give for a day free from wind or rain – I’ll settle for dry even if it’s cold, thank you.

 

Freakin' Fantastic Folks... Friday

Lately I have been coming across some incredible stories of parents - just plain and simple parents like you me - doing freakin' fantastic things! Just totally cool, or completely insane, or heartwarmingly selfless, or forehead slappingly clever things that leave me saying firstly, "Wow, that is freakin' fantastic!' and secondly, "Why the hell did I not think of that?"

So I think I need to share what these incredible parents are doing - because it warms the heart, because their actions are full of ideas for other parents who are less creative perhaps (LOL!), and finally because maybe we can all take something from these stories and see the magic behind the sometimes mind numbingly mundane moments that make up a lot of the parenting experience...

First up!

An awesome father who takes disability and turns it on his head. What a cool, good looking, infectiously happy son, and with a father like his, it's no wonder!

The original link to the article on the Huffington Post is here

Say whaaaaaat?.... Wednesdays

So, starting this lovely New Year (yes!!!!) is a new  regular post I'd like to call 'Say whaaaaat?.... Wednesdays'

While Harlan may be my second-born, I've experienced a lot of Firsts with him, not to mention the cutest, funniest and sometimes just plain scary stuff that comes out his mouth almost daily... The kid cracks me up!

I didn't experience this with Malakai, and of course a global speech delay will do that to a kid... I often wonder what Malakai would be saying if he could? What sorts of quirky ideas is he having but just not able to express?

But then, I spend a lot of my time talking about Malakai, so this is pure Harlan, because I love this crazy kid and think he deserves a medal for his awesomeness!!!

In the bath the other day Harlan drops a bombshell:

Harlan - Mom, I have a pain in my brain.

Me - Really? Harley where is your brain?

Harlan - I don't know mommy, where is my brain?

Me - (I point to my head)

Harlan - No mommy! You forgot! Its here! (laughing loudly and pointing to his heart...)

*I didn't know whether to laugh because he thinks his brain is in his chest, or whether to worry because my child is having chest pains!?

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