What’s better than being a human jungle gym?

POSSIBLE ANSWERS
A Being a human jungle gym for orphans.
B Being a human jungle gym for orphans smeared in cupcake icing.
C Being a human jungle gym for orphans smeared in cupcake icing who keep stealing your reading glasses.

The correct answer is ‘all of the above’. And this is how I spent Monday afternoon: at the Othandweni Children’s Home in Soweto at the invitation of Chevrolet and their UTEForce initiative.

Chevrolet is footing the bill for a year’s worth of weekly Be Sharp Beetles at Othandweni. Those music classes with the rhythm sticks and the castanets and the singing… It’s really nice of them, and the kids… you should see them sing along. It’s good for growing minds and tickles the spirit.

(I hate it when brands swoop in to these places for a day, take a photo of some suit with his sleeves rolled up painting a wall, slap it into their ‘corporate social initiative’ report and that’s it.)

For me, it was a shake-up.

A reminder that no matter how complicated things are getting at home with one disabled kid, one 18-month-old terrorist, and another baby on the way in 6 weeks or so... we’re TOGETHER, we’re family, we have each other. Sometimes the Lionheart clan can even afford to eat something more exotic than mince on rice! Which I imagine is not the case at Othandweni.

They were very strict about not allowing us to take photos of the children. 

Ethics. I approve.

Kid President and Rainn Wilson

Somehow I made it through Mother’s Day without blogging about what a gobsmacking load-of-commercial-poop day it is. I’m glad I didn’t, because after I got my handprint card from Ryan, my TEA-riffic poster from the Lionheart, and a box of chocolates from the father of my children, I softened to the idea. And I even got to eat five or six chocolates before the rest were snacked!

Now that I’ve had my once-a-year inoculation of smush, I’ve got to share Kid President with you. This 10-year-old is a motivational speaker, and, yes, he’s definitely channeling Bill Cosby. He’s the frontman for the SoulPancake series on YouTube. But what you probably don’t know is that the real genius behind SoulPancake is Rainn Wilson (of The Office). This guy.

I adore his offbeat sense of humour, and his brand of funny shines through in the Kid President videos. So without further ado, I present Kid President’s Open Letter to Moms. Get ready to laugh.

  

Our family, in Makaton hand signs

On Saturday I went to a Makaton workshop to expand my vocabulary of hand signs that we use to communicate with Travis. Travis doesn’t speak, and he doesn’t use hand signs himself – but he does understand them as they are used frequently at school, and because he struggles comprehending language, plus he finds facial expressions confusing, it helps so sign while we talk.

Makaton, by the way, is based on British sign language. You need two hands to do it, and all the signs come naturally to you. Imagine how you would show “house”. Think. Think. Got it? Yes, you would make a little steeple with your hands to show a roof. That’s exactly what the Makaton sign for house is!

Anyway, I left the workshop having expanded my Makaton list of signs from about 20 to 100. The photos below show the signs for everyone in our family. I already know these signs, but I thought I’d share them, as most Makaton signs require movement – which is hard to show in a still image.

So here – the Lionheart clan in Makaton!

T is for Travis!

Update on finding a 'home' for our disabled son

In January I wrote that we are considering placing Travis the Lionheart in a ‘home’. Look at that: I still can’t write-say-think that horrible word without blunting its edges with quotation marks.

What I OVER-estimated was how easy it would be to find this magical place. And what I UNDER-estimated was my own capacity to self-sabotage the process of letting go of my first-born to be cared for by strangers.

I can’t let Travis go. I just can’t, not yet.

Taking the first steps on this journey has shown me that it is absolutely the right decision for my Lionheart, for my marriage, and for my other children. But this knowledge hasn’t unglued the brakes. My heels are dug in. I am paralysed by the side of the road. By my fears for my special needs son.

I torture myself at night with scenarios of him being molested by help staff, being hurt by an older mentally handicapped person who is unsupervised, being hosed down in a shower because he’s been spoilt with all the hours in the bath tub I allow him. Travis going thirsty because no one but me understands what he means when he clucks his tongue… His skin being rubbed raw by a sharp nappy tab that nobody has thought to check…

As Dr Seuss wrote: “Oh the thinks you can think!”
I think terrible things. I think the worst kinds of things.

Nightmares aside, I do have some lessons learned that are worth sharing.

The Western Cape is ‘special needs central’ in South Africa, followed by Gauteng.

The term used to describe a ‘home’ in special needs speak is ‘residential facility’. And I have a list of residential and non-residential schools, centres and facilities in Gauteng that I am happy to share.

There are only a teeny-tiny handful of residential facilities for special needs children, and fewer still that are taking new residents, never mind having a waiting list. This tells me that most people with a severely disabled child keep that child at home.

This makes me feel guilty, like we’re throwing in the towel with Travis too soon. But as the sister at the respite care centre we visited told me: “I’m so pleased to see you are starting to create a care plan for Travis while he is so young. Too many families only start when their child is in their teens, or not at all.” And that’s when I realised that we aren’t trying to offload the burden of raising our disabled child; we are actively putting together a plan to see that he has the care he needs for the years to come. Travis will probably outlive us, after all.

On that note, great news – when Travis turns 18, scattered around Johannesburg are many, many residential facilities for mentally handicapped young adults. These places are like Disneyland! There’s aqua therapy, horse-riding and movie nights (fun, huh?) The residents live in a village-like commune, and a handful share a house and are supervised by a house master who is usually a volunteer. The catch? It also costs as much as going to Disneyland.

And finally, I have discovered to my mortification, that I am uncomfortable around mentally handicapped adults. Shocking disclosure coming from a special needs parent, hey? Here’s what I have come to realise: mentally disabled children are a bit like kittens: the ‘aw, cute factor’ helps make it easier to interact with them. But a full-grown man, with the height and the strength of a full-grown man, but the reasoning of a child – it’s a little scary. And this is something I will have to adapt to and grow more comfortable around as Travis gets older.

So these are a few of the things I have uncovered in our journey to find Travis the care he needs. We still haven’t made any concrete decision about what to do about our Lionheart, but we are armed with plenty more information than we had a few months ago. Baby steps, baby steps.

Review of Chop It for that first haircut

I have a silver filigree locket. Inside that locket is a wisp of the Lionheart’s hair from his first haircut. It’s a magical locket – roll your eyes at my silly goose tendencies, I don’t care.

Mothers understand why the First Haircut is a big deal. It’s the day you walk into a hairdresser with your squishy, and walk out with the same kid – except gone are the chubby cheeks and curls, and hello! Who is this boy? It’s like you’ve left your baby behind in the hair cuttings on the floor. And your heart thumps with happiness and sadness at the same time.

I’ve blogged about the hellish ordeal that is cutting Trav’s hair. The sensory overload is just too much for our special needs kid and it ends in tears and teethmarks. Over the years we’ve found the solution: a saintly hairdresser called Yvette pops in at the Lionheart’s school every few weeks and for R80, gives his mane a trim, no buzzers, in an environment that he feels safe in.

Baby brother Ryan turned 18 months a few days ago. Now, his Ouma gave him a much-need trim over the December holidays so technically he’d already had his first haircut. But the Rastafarian dreadlocks at the back of his head were becoming spectacular again.

And there is only one place to go for the First Big Boy Haircut in our neck of the woods – Chop It at Lifestyle Garden Centre.

We went on a Sunday. I called that morning to find out if there were any spots available, and amazingly, yes, they could squeeze us in at 11am. Morne and Travis dropped the two of us off at the entrance while they searched for parking.

Now, Lifestyle is famous for being chaotic over weekends. On walking into Chop It my first thought was ‘Holy mojitos – is there a pamper party or something happening in here?’ There we just so many little people having their hair cut at the same time.

The receptionist Danielle was lovely, and in the blink of an eye (I’m not kidding, literally one blink), Ryan was seated on my lap in front of a big flatscreen showing the animated movie Brave.

In the next blink our very efficient hairdresser Margaret had both of us safely draped in those bibs that keep the itchy clippings off your clothes, and in a third blink she was spritzing Ryan’s hair with water.

It was all happening so fast I panicked that Ryan’s hair would be done before his dad and Travis arrived to share this once-in-a-lifetime moment with us! They walked in 2 minutes later.

I understand that weekends are very busy, and I didn’t hold it against Chop It for getting on with the business of the First Haircut without much ceremony. Okay, maybe just a pinch of resentment. I did take my (hurried, slightly blurred) ‘before’ photo, which was important to me.

The interior of Chop It is like oompa loompa land, with painted walls and pop-out flowers and all kinds of cutesy, crafty things to hold your child’s attention while a sharp pair of scissors darts around his head like a hummingbird.

Ryan zoned out in front of the movie, and he didn’t flinch once, like he’d had 100 haircuts before show-off! Margaret asked me what I wanted - very short sides and back, with a little length on top that Ryan can gel with spikes - and within 10 minutes of nimble snipping she was finished. Later I noticed a few strands that she’d missed around the ears, but I'm not one to fuss about that kind of thing.

She gelled his hair like that the guy from the Prodigy. We spent the rest of the day calling him our little Firestarter!

We were given a First Haircut certificate with a few locks of Ryan’s hair to keep.

Afterwards we strolled through the pet shop at Lifestyle where the boys could stroke a bunny and gaze at the marine fish tanks. There’s also that gourmet food market around the corner where you can grab a scoop of gelato before you go home. We avoided the infamous playground with the choo-choo train and the fun fair rides – it was overrun by stampeding little people on sugar highs!

Verdict: A thumbs-up for Chop It from the Lionhearts, but go during the week when it’s quieter.

Cost: R85 (for a haircut that comes with a certificate)
Phone for an appointment: 011 793 7226
Website: www.chopit.co.za