How we’re not defined as a family by our son’s special needs

When I started writing about our life with Travis in 2010, he was two years old and I’d never been more miserable, desperate and heartbroken. I was newly married, and our first-born was mentally challenged and physically disabled, and more immediately… he didn’t sleep and he wouldn’t eat.I would wake up each morning and know my future, long-term – our future as a family – was trashed. There’s no other word for it really. And in the short-term, I had to deal with a baby whose eyes couldn’t focus on my face when I spoke words of love, who didn’t […]

Awakenings

Travis is nine years old, but it’s hard to pinpoint how old he is, intellectually. Sometimes I tell people it’s 18 months. Sometimes I say he has the mind of a 2-year-old. The truth is I’m guessing. I don’t know what’s going on in there – but to say he’s at the level of a 3-year-old seems like a stretch. After all, Travis has a brother about that age, and Oliver is light years ahead of Travis physically, mentally and emotionally. But I wonder if I’m doing our Lionheart a disservice by trying to pin a label on his brain. […]

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You can teach an old lion(heart) new tricks

Let the record reflect that 5 minutes ago I had another breakthrough with Travis the Lionheart. I think I’ve figured out how to teach him to use a spoon! I’m so excited at the possibilities – just imagine… If I can get this right, then at supper time I’ll be able to eat a meal at the same time as the rest of the family instead of feeding Travis first, and then eating my own (usually cold) plate of food. Actually, I did sorta-kinda find a workaround for that little conundrum. I’ve started sharing a plate with Travis. So I’ll […]

A day in the life of our Lionheart

I don’t blog about our boy nearly enough these days, and I think that’s because our family has settled into a happy routine. As you know, in February this year we decided to bring Travis the Lionheart home to live with us again after he spent seven months in residential care. Since then he’s put on loads of weight and is mostly happy and giggly, but of course, there are still the difficult days. He stopped pulling everyone’s windscreen wiper blades off their cars (yay), but his new hobby is ripping covers off books. This is making his brothers pretty cross, […]

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The Internet thinks I run a home for special needs kids, and it’s kind of amazing

This competition is closed and the winner is Unathi Mamane. Whenever I get an incoming call from a phone number that I don’t recognise, it’s someone phoning to ask if we have space for their kid at Living Lionheart. Did you know that I run a home for special needs children? Neither did I. But the general population of the Internet thinks so, and it’s all because of a quirk of the great big machine called Google. (And also because people can’t read properly.) It turns out that I have written so many posts over the years about our journey […]

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I have something important to share…

… and it’s difficult for me to write this. In fact, I’m typing this blog post as fast as I can to just get it out. It’s been haunting me. Like a toad lurking in a dark corner. The reason I’m finding this hard to write is because I feel guilty and shamed. Because so many of you jumped in to help out our family when we really needed it. You contributed time and money, and you bought into everything I had to say. For a while it worked out just like I thought it would, and then things went […]

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Why I think autistic people are a little like the X-Men

Every week, I have someone phoning or emailing me, asking me if I run a home for children with special needs. I don’t, of course. But if I did, I would hang a sign by the front gate that reads: “Welcome to the Lionheart School for Gifted Youngsters.” If you recognise this wording of this sign, you’re probably a fan of the X-Men comics and movies. Xavier’s School for Gifted Youngsters is where Professor Charles Xavier teaches young mutants how to handle their powers. It’s a lovely piece of fantasy, but it’s closer to being a reality than you imagine. […]

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Captain Giggles is home for the weekend, and my heart is whole

    Travis has had nicknames aplenty over the years. On this blog, he’s our Lionheart. But his dad has called him ‘Sausage’ since the day he was born. And when we snuggle, I call Travis my ‘Bear-Bear’. Have you seen his thatch of thick, brown hair? It’s very Beatles. Very Yellow Submarine. Now Travis goes by the moniker Captain Giggles, because his shy and merry laugh is the birdsong I wake up to when he’s home. It’s the sweetest sound. God, I miss you when you’re not here, my son. After we placed Travis in residential care in July […]

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The kiss of life

When you are raising a disabled child, you get used to living on rations. Those rare moments when you experience joy. It could be the joy of something small, like when Travis accidentally verbalised the word “mom”. I knew I would never hear that word bubble from his lips again. Those lips remain as silent of vowels and consonants today, as they’ve always been. I’m okay with that. It could be the joy of something colossal, like his first steps, that awkward shuffle-shuffle-shuffle at the age of six. But small or big, you store the memory of these joys. Carefully […]

Like learning to ride a bike

For every action, there is an equal and opposite reaction. Sure, the Big Guy Upstairs in His Infinite Wisdom has handpicked you to raise a boy who still can’t hold a fork and wears nappies at the age of eight years old. It’s hard. He has also handpicked you to raise another boy child who was walking when he was eight months old, and at the age of three, asked you to take the training wheels off his peddle bike so that he can go faster. Spoiler: he went faster; so did my heart! There he goes! Raising Travis the […]