Monday, January 31, 2011

The Boiling Macaroni Incident and Autism Service Dogs

Note: I’m generally not the type to forward sentimental PowerPoint shows and lolcat pictures and chain letters to help save some kiddiewinkle who has been lost since, according to Snopes.com, around 1997. But this is different, m’kay.

A couple of weeks ago, a pot of boiling macaroni fell onto the face of a little boy with special needs called JD, or ‘Deeds’ as his family call him. Since then, I have been following his recovery, cringed each time his burns need to be cleaned, beamed when he was given an iPod (iPods are one of his ‘things’, also his sock monkey and blankie) and somewhere along the line I became smitten.

Now, your immediate reaction is probably: “What the hell kind of parent lets this happen to their kid?” The answer is: me... you... all of us. It was an accident. It happens so easy, no matter how vigilant you are, toddlers can move like the Flash, and are as curious as kittens.

This post is not about recriminations. Something about Deeds sparks a little light inside for me, and I want to share that with the Lionheart fan club.

Three-year-old Deeds has autism, periventricular leucomalacia and mild cerebral palsy. What Deeds and his parents want more than anything in the world is to get him an Autism Service Dog.

Like a guide dog, this pooch helps autistic children become more independent, confident and handle sensory processing information. These amazing dogs will notice repetitive behaviours and intervene, provide support if the child has poor balance, help steer and guide the child when it is overwhelmed or disorientated by all the audio and visual input in an environment, and much more.

We like to think of Soapy the Labrador as Trav’s autism service dog, although it’s not like she’s been trained or anything. Soapy really helps Travis ‘connect’, which is challenging when you are autistic.

You can bet a real autism service dog, like the one Deeds wants, is expensive. (I am absolutely not pulling a fundraiser here.)

Here’s what I’m suggesting: step out of your skin for a few minutes today. Pop on over to Deed’s blog and become immersed in his world. My grandmother, who I called ‘Ma’, used to say: “Remember kiddo, no matter how many people there are in the world who are better off than you, there will always be more who are worse off than you.”

I’m not saying that I think that Deed’s family is worse off than the Lionhearts. But for almost three weeks now, they have been inspiring me as they cope with the aftermath of the Boiling Macaroni Incident. It has made the daily trials of raising our own special needs child seem not so insurmountable.

Catch up with Deeds and his quest for an Autism Service Dog over at http://dog4deeds.wordpress.com/

Friday, January 28, 2011

WTF Friday: Issue 1

What The Fuck Friday is the most blissfully belligerent day of the week. It’s the one day the author of this blog does not delicately arch an eyebrow in distaste at some perceived stupidity. Instead, she puts on her cowboy hat, and tackles it like a tipsy rodeo clown in high heels.

Terrible twos – what an inconsiderate label to stitch to your toddler.

Oh, I get it, I really do.

Somewhere in a rug rat’s second year, roughly between the time it starts stringing together sentences and the time it figures out how to go poopie in the potty, your two-year-old is going to “test boundaries”. Read: find out how far mommy can be pushed until she locks herself in the loo with a bottle of cooking sherry and a crumpled pack of emergency ciggies she stashed before you were born, in anticipation of just such a moment.

What makes my left eye start twitching is this... moms who dismiss their kid’s behaviour (noticing that I’m not labelling this behaviour myself) as, “Oh, it’s just the terrible twos.”

Err... “Your kid is almost four,” I point out, as the little boy pulls down its pants again to show us how he can ‘make a helicopter’ with his penis.

“I know, he’s a late starter,” explains the mom.

It’s not just that kids ranging in ages from 12 months old to 5 years old are running rampant under the umbrella of the beneficent Terrible Twos, however flimsy the premise. It’s that ALL KINDS of behaviour are excused, and more specifically, not addressed.

If your two-year-old enjoys torturing the family cat, sure, it could be the Terrible Twos. Or he could be a budding psychopath. I’m just putting it out there. (Okay, that’s an extreme example. I’m 99% sure that none of the parents in my social circle are raising psychopaths.)

I’ve seen toddlers scared of their own shadow. Toddlers who smear poo on the bathroom walls. Toddlers who won’t eat anything that is not pink. Toddlers who call their elders “a-holes”. Some of this behaviour is about pushing boundaries and asserting their personalities, others indicate some underlying problem you should be taking a closer look at.

That’s my Terrible Two cents. Over and out.

Wednesday, January 26, 2011

The Battle of the Finger Snacks # 1

Lionheart fans, you’ll member that New Year’s Resolution #2 of 3 is: finger-feeding.

I’m gulping rather large sips of my afternoon glass of wine as I’m typing this. Takes the edge off the frayed nerves, don’t cha know. You see, there’s a stand-off happening in the kitchen right now.

Travis is sitting, dejected and furious, on the tiled floor. He’s been whining and sobbing for the last 15 minutes. Positioned between his legs is a Tupperware with chopped sections of dry wors (sticks of dried meat, for our international readers). I’ve painstakingly removed the skins from each piece, just the way the Lionheart likes it. He’s even had a taster to confirm: “Yes, this is one delicious afternoon snack.”

So he knows: the pieces of dry wors in the Tupperware are NUMMY NUMS.

“Now, if only there was some way to get one of those chewy treats from the bowl, to my mouth,” I can see the three-year-old Lionheart pondering this conundrum.

“Dad won’t help.”

“Mom, the evil cow, is being very uncooperative. I’ve taken her hand, like, 37 times and put it in the Tupperware and she won’t take a piece and put it in my mouth. To add insult to injury, she keeps putting my hand in the bowl. I even TOUCHED one of those things with my fingers. Is she insane?”

“Whining non-stop isn’t making hunk A of dry wors transfer to socket B in my face, like it usually does.”

“Turning the Tupperware upside down isn’t working.”

“Jedi mind tricks are useless, and I’m even calling on the Dark Side of the Force for assistance here.”

Yup folks, the Lionheart household is a miserable place to be right now. My husband and I only have ourselves to blame. We know how easy it is for an autistic child to get locked into a bad habit, no excuses.

Travis was finger-feeding himself about a year ago. Sure, he still got frustrated – not only is one side of his body weaker than the other (hemiparesis), but he also has terrible depth perception (optic nerve hypoplasia). When you are a toddler learning to feed yourself, these are cruel obstacles.

I’ll admit it. Travis wore us down. We got so tired of the shrieking and yelling at food time, when Travis struggled to manipulate his hands properly to get morsels into his mouth, that we started helping him. Just a little. A couple of months later, we have reached the point where the Lionheart can no longer remember how to feed himself; and we programmed this new behaviour. I still spoon-feed my three-year-old like a baby. I even feed him crisps one by one.

It had to stop.

This is one of those times when it just plain sucks to be a special needs mom and dad; I have no eloquent way to put this. Not only has fate dealt your kid a crap hand, but now instead of showing this unfortunate child some kindness, you as a parent have to harden your heart, hold your arms stiff by your side, and watch as your child painfully learns how to do the simplest thing: like feeding himself.

Because you know, in the darkest corner of your heart, that one day you’ll be a frail 80-year-old geriatric and your special needs kid will be a 53-year-old grown man who still relies on you to feed him and wash him and cuddle him... and the next day, you won’t be there at all.

They say it takes two weeks to form a new habit, right? I’m counting on it.

(Update: in the 30 mins it took to write this, there are zero chunks of dry wors left in the Tupperware. That’s because Travis eventually emptied them on the floor, and Soapy the Labrador took this as her cue to ‘vacuum’ the mess for him, bless her.)

Monday, January 24, 2011

One Gargantuan Post

Travis is huge. Colossal. Gargantuan!

I’ll admit I’ve been trying to sneak the word ‘gargantuan’ into a conversation all week. Sure, I’m probably blowing this weight issue out of proportion, but that’s because the Lionheart’s tummy rolls are becoming, err... disproportionate.

Six months ago, I was wrestling the Feeding Tube fairy for control of my fussy eater’s palate. Luckily we swerved around that pothole in Trav’s journey to a more age-appropriate weight: I still have nightmares where I pull up his T-shirt and a plastic tube is protruding out of a neat, surgically cut buttonhole in his torso.

In December, when Trav’s neurologist warned me that his new behavioural meds would cause some weight gain, I was like: “Bring it on, girlfriend!"

The holidays had me loosening the top button of all the Lionheart’s shorts. I watched in fascination as the ‘Buddha rolls’ around his middle grew... mealtimes became a pleasure. As opposed to that one night in July last year when I wrestled my disabled toddler on the carpet, trying to force Just One Spoon of chicken soup in his mouth, sobbing hysterically – not my proudest moment.

By January, I’m already buying him size 4-5 clothes. He’s only a little over 3 now, by the way.

While we’re talking children’s clothes, let me say that I’m sick to death of Ben 10 and Spider-man. Firstly, Travis has no idea who these characters are. Secondly, 90% of the clothes have these thick plastic appliqu├ęs, on the front of the shirts especially. Do manufacturers know how effing hot it is to wear those plastic tees in this ungodly heat?

Back to the belly... look, Travis is not FAT fat.

Like many special needs kids, he has hypotonia – low muscle tone. Trav’s always going to be on the squishy side. No washboard abs in his future, I’m afraid. Anyway, said squishiness is making him look a lot chubbier than he really his. When the Lionheart is in a standing position, he looks sleek as a seal.

When we were on the beach at Kenton-on-Sea earlier this month, I noticed some real tubby tots lolling in the waves at low-tide. Like little beached seals, in fact. Bursting out of their tight black spandex one-pieces... In comparison, Travis is almost petite. He’s also grown taller, as well as wider.

Now I’m presented with a fresh set of challenges:

1. Before, when we were skirting around feeding tube territory, I fed the Lionheart plenty of calorie-rich foods. Not crisps and sweets, but custard made with fresh cream. Full cream yoghurt. Rich pastas. That kind of thing. With Trav’s sudden weight gain, I find myself – finally – at that juncture where most parents of toddlers arrive: healthy snacks. What are they? How can I disguise them as treats? Can I get my sensory sensitive kid to eat fruit pieces by threading them onto kebab sticks and making a stick man with a strawberry for a head?

2. When your 16kg three-year-old can’t walk, and probably won’t for a few years still, carrying him on your hip is a real work-out. Travis the Lionheart is becoming my reason for staying fit! Guess I can’t complain here.

3. Lastly, finding supermarket nappies that fit is like searching for a golden ticket in a Wonka bar. Today we discovered Pampers Size 6, for 16kg-plus, so hopefully these will work out for a couple of months. Otherwise I’ll have to explore the uncharted territories of special-brand whopper-diapers for the large and incontinent at a specialist pharmacy.

Eish, just when I thought I was getting the hang of raising the Lionheart in my bath tub!

That said: I adore my cuddly cub. I'm given to sneaking into his room at midnight for a snuggle while he's blissfully unaware of my atttentions. It would be creepy if I wasn't his mom.

Thursday, January 13, 2011

Quality education, beach politics and trick questions

The Lionhearts have been at Kenton-on-Sea since 6 January.

Travis is brown like a slice of Melba toast, and I bought him a ‘Bakugan’ swimming costume, as his old cozzie now resembles those teeny Speedos strangling the hell out of the privates of grizzly grandpas on European beaches. Also, I have it on good authority from our best friends’ kids that Bakugan is now officially cooler than Ben 10.

Just because my Travis doesn’t engage with these things, doesn’t mean we’re off the hook when it comes to the ‘Hot or Not’ list endorsed by the Playground Committee.

Let me throw this out there... we are off the hook when it comes to putting Travis through the shocking education system in South Africa. Before Travis was 8 months old, my biggest fears were A) Where the hell would I find quality schooling for him in this country, and B) How on earth would I afford it? I was already investigating waiting lists for some of the better schools.

With the disgusting 2010 Matric pass rate results out a few days ago, I have never been more relieved that Travis has bypassed the entire South African public school system. (See, there are perks to having special needs.) To pass Matric in South Africa, you only need 30% in three subjects and 40% in the other three. Frightening!



Onto the beach politics...

Beaches are tricky for us. Apart from how some of it manages to sneak back to the beach house, into our beds – I’m always brushing beach sand off the mattress – it’s also a social challenge. Beaches are a place where kids make new friends. But Travis doesn’t make friends. So to avoid the endless ‘He’s shy’ and ‘He’s autistic’ and ‘He doesn’t walk or talk, I’m afraid’ explanations to the friendly moms and tots who amble up to us in the shallows, we sit a little apart from the village of umbrellas on the beachfront. I feel a twinge of guilt that my kid isn’t playmate material’, like I’m letting the umbrella tribe down.

The Lionheart loves the ocean. At low tide, he splashes and launches his toy car into the receding waves, and I scramble to grab it before it washes into the deep. Except yesterday. Yesterday Travis was gently bowled over by a small wave, and boy, that was it. After that, the ocean may as well be sulphuric acid.

The second tricky thing about going to the beach for the Lionhearts is that Travis doesn’t walk. It’s a challenge to lug a 16kg boy and a beach bag (we don’t even do cooler boxes and umbrellas), while herding an ecstatic Soapy the Labrador, when the sand is sucking at your ankles. What a work-out. I don’t know how I’ll cope when Travis hits the 20kg mark and he still can’t walk.

Onto the trick question...

We had a braai at the family farm in Kleinemonde on Sunday, and a gentleman there asked me: “So, what is Travis like?”, and as I started to describe the stimming and spinning and dolphin language he interjected: “I mean... what his personality is like?”

I was stumped.

I wonder if I am the only special needs parent who is guilty of this sin? I am so focused on managing the complexities of the Lionheart’s disabilities that I have not paid enough attention to who this three-year-old is underneath his labels. I know all his likes and dislikes – but these must not be mistaken for personality traits.

So here it is: Travis is soft-hearted, his feelings get hurt easily. He is shy, does not trust easily, and is impatient. He has a short temper. He is determined, and stubborn. Travis laughs easily. He is affectionate. He is true to his emotions.

Travis the Lionheart sees things that no one else does...

Let me round off by recommending The Curious Incident of the Dog in the Night Time by Mark Haddon. It's the tale of a 15-year-old boy with Aspergers Syndrome that really got me thinking about some of the different ways that autistic people view everyday things. Great read!

Saturday, January 8, 2011

Chopping that To Do list down to size

Buddha belly: the chubby rolls around the Lionheart’s middle.
Moobs (or ‘man boobs): the, er... other anatomical extra bits the Trav is showcasing.

He came into the world weighing 2.95kg, which is a little tinier than your average ba-boo. That first week in ICU at Parklane maternity hospital, his anxious new parents measured out 20ml of milk per feed, and prayed that he’d keep it down. That was the benchmark the paediatrician set: 20ml for each feed, and we could take our newborn son home.

Take one tablespoon and one teaspoon. Fill it with liquid. That’s it. 20ml.

One day that stressful week at the hospital in September 2007, our youngling vomited his 20ml of milk formula up. Morne and I didn’t hesitate: we stripped his one-piece jumper off, cleaned up the goop, pilfered a fresh jumper from a tub of teeny spacesuits they keep for the babies in ICU, and said... nothing... to no one. Especially the doctors.

We just wanted Travis Steven Venter to come home.

Today mommy needs to buy the Lionheart size 4-5 clothes, and he’s barely three years old! Yes, shop assistant lady person, elastic waistbands, please.

This anecdote brings me neatly to my next topic: New Year’s resolutions. Getting Travis to put on some weight is not one of them, yay.

All special needs parents keep a mental to-do list as long as the queues at the Returns counter after Christmas. More occupational therapy! Make a hopefully life-changing appointment with world-renowned specialist! Sell remaining kidney to afford Applied Behavioural Analysis for autistic Timmy! Stop randomly shouting “F-f-frack!” and “Gawd!” and “Ballls!” when you ponder your complicated child, causing people to whisper that you probably have Tourettes and – ah-hah – that’s why your child has special needs, too. Mystery solved.

The lists of things we need to fix or improve gets longer as our special needs kids grow older. I’ve limited us to only three this year, and getting the Lionheart to start walking is not one of them; that's now the Holy Grail.

1) Convince the Lionheart to finger-feed. Travis has everything spooned or fed to him. Even a bowl of crisps... you have to pop them in his mouth one at a time. He won’t touch anything with his fingers: not even a Fizzer, or a stick of biltong, or a biscuit. Our little Caesar.

2) Travis, use your words! Yup, he still speaks only dolphin. I know that Travis can understand us, even if it’s just keywords like ‘bottle’ or our sing-songs like the Bath Time Song or the Brushing the Toofies Song. This year we are concentrating on getting some kind of verbal response – it doesn’t have to be a word. I’ve long given up on hearing my son call me Mommy. (Weirdly, I had a dream when Travis looked me in the eye and enunciated very clearly and solemnly: “Stacey”.) But if he could make a sound, like a sucking sound when he wants a bottle. Or a ‘gah’ when he means ‘yes’... that would be progress.

3) Less yelling, more cuddles.