Friday, 30 July 2010

Planning a Trav-friendly birthday party

So, we have a small boy who is turning 3 years old in four weeks from today: 28 August. Now, we've learned a lot of lessons after the first two parties...

Helium balloons. OUT.

Having it in our tiny townhouse. OUT.

Expecting Trav to enjoy himself while surrounded by screaming kids. BAD IDEA.

So this year we are thinking of something small and intimate. Just having a couple of friends and family members over for a slice of cake. I know, compared to the over-the-top themes and elaborate activities, and decor and hiring, this seems not very fair to Travis. But he had a horrible time at his first two parties. I spent weeks planning, and for what? To look good in front of the other moms?

Just because it's low-key, doesn't mean low budget. I think this year I'll spend all that money on toys for him, because boy, it's a challenge to find something that he enjoys playing with.

Wednesday, 28 July 2010

Special needs kids can be expelled, too!

So... a little boy has been expelled from my son's school. The special needs school.

That's right, expelled. Apparently he has been attacking kids in his class. Which brings me to something very close to my heart: perceptions about disabled, challenged, handicapped kids (or whatever label you're more comfortable with) and their parents.

Sometimes I feel like I should waft about dressed like the Virgin Mary, posing piously with my hand outstreched, a glowing halo hovering about my temples... the picture of virtue, patience and long-suffering. After all, my first-born son is mentally and physically disabled - I must be a SAINT to bear this cruel and unusual burden.

The fact is, I am no saint. I must be special, because God chose me to be Trav's mom? Phoey! God doesn't give people more than they can handle? I guess so.. (I've heard it all, can you tell?) but I handle "our little problem" by some creative problem-solving, the occassional online rant, and I'm partial to a glass of wine or a cosmopolitan cocktail in the evenings. And as you can see, I'm not very politically-correct either.

Yup, I'm like a lot of moms out there - nothing "special" to see here, folks.

Another fact: this is no burden. I have no other children; I have NO IDEA how to play games with ruggles (regular kids) who are the same age as my son, let alone the challenges of raising one. For my husband and I, Travis the Lionheart is as regular as kids get. For us, at least.

Which brings me to my next point. Special needs kids, they're not all that "special" either. It's their needs that are special. Not all of them are sweet and smiley - although many children with Down Syndrome are blessed with a (generally) sweet temprement. Not all autistic kids can solve advanced maths problems, and line up toys cars in neat rows. That's just a tiny percentage of them. And not all physically disabled kids have "bright minds" that are trapped in unmanageable bodies.

Many kids - and yes, like Travis - are angry, confused and frustrated. They throw horrible tantrums, and have good days and bad days, just like regular kids.

And there are some kids - like the one who was expelled from the special needs school - who are dangerous.

Imagine being that mom, and being told that your son is no longer welcome. She's not a bad mom, and now there is no place for that little boy to go. It must have been a heart-breaking decision for the principal to make as well. I know this big-hearted woman - she doesn't want anyone with special needs to fall through the cracks.

My point is, you need to challenge your perceptions about the special needs community. See beyond the labels you've attached to us, and recognise that we're a collection of personalities, individuals, with individual needs too.

Sunday, 25 July 2010

How special needs moms shake hands

Many parents of special needs children say they feel lonely, unable to connect with other adults, and trapped in their homes. It's for this reason that we spend so much time online, and in virtual support groups and chat rooms. I belong to a Google group for parents and people affected by Septo Optic Dysplasia. Now, because people who have this condition have a unique set of symptoms*, we need to identify what we have in commom quickly.

If someone had to come up to you and say, "So what's wrong with your kid?" you'd think we'd be offended. Not true at all. In fact, in a chat room you get so tired of typing it all out every time, that eventually it becomes your email signature.

For instance, in my Google group my signature is:

Stacey Vee, mom to Travis (3) who has SOD:

Trav’s traits are missing septum pellucidum, optic nerve hypoplasia, nystagmus, a tiny cleft in his left temporal lobe called schizencephaly, very mild epilepsy, weakness on the left side of his body, and some autistic tendencies.

Interesting huh? It's like going out to coffee with your friends and your T-shirt reads: "Hi, I am 29 years old and a Libra. I am near-sighted, and suffer from constipation every now and again. At the moment, I'm experimenting with a teeth-whitening toothpaste and am trying out a new hairstyle."

Yup, there's no such thing as too much information when you're Living Lionheart.

* Much like all people with autism are different. Yes, that's right people... not everyone who is autistic is a 'rainman' or brilliant with numbers and music. This tiny percentage of the autism community are 'savants'. Savants acoount for around 5% of autism cases.

Thursday, 22 July 2010

Travis and Soapy the Labrador... a furry friendship!


I've heard that there are specially trained Labradors that help autistic children 'connect'... which is something these amazing kids struggle to do. We were actually looking for a Labrador when Aunty Michelle came to our house with this sad white ball of fur that had kennel cough. The pup had been wandering around the farmlands outside Johannesburg, neglected and starving.

Soapy was originally called 'Sophie Khumalo', but that's pretty hard to say when you're only a toddler.

Now 'Soapy' lovingly puts up with Trav's attentions. What a honey.

Wednesday, 21 July 2010

A fairytale about feeding tubes and beanstalks

For the last couple of months, this Lionheart family has been living under the threat of a Feeding Tube in the Stomach. It’s capitalised because Feeding Tube in the Stomach has become a regular guest at breakfast and dinner. Feeding Tube in the Stomach has disrupted snack time, and caused tears, hysteria and slamming doors!

You see, at Trav’s last visit to his endocrinologist his growth chart showed that his weight was dropping off – and he hadn’t grown a single millimetre in the last 18 months! Dr Segal (who is indeed something of an action hero in his field) said if Trav didn’t pick up any weight or grow taller by his next visit... well, Feeding Tube in the Stomach.

We met with a dietician, who gave us some great advice... which leads me to this wonderful tip: stop and LOOK at the label on the yoghurt you’re feeding your kid. It says ‘low fat’. Now throw it in the dustbin. There are only two brands of yoghurt worth feeding your child as a snack – the full cream kiddies’ yoghurt from Woolworths, and I just discovered a brand from Spar called Squillos.

Long story short – in the many mealtimes since the threat of Feeding Tube in the Stomach, we have tried singing songs, playing games, begging, screaming, deception and trickery. Travis is onto us – that child, he’s the only one who isn’t terrified of Feeding Tube in the Stomach.

God bless you, full cream yoghurt.

And custard... And pudding cups... And Nido formula... And macaroni and cheese.

Travis had his check-in with Dr Segal last week Thursday (15 July), and it looks like our little Lionheart picked up a whopping 2.8kg and now weighs in at a decent 12.9kg at 3 years old. He’s also grown another 2.5cms and is now 91cm tall – which is still pretty short, but he’s like a beanstalk compared to six months ago.

Now there’s an empty seat at the dinner table where Feeding Tube in the Stomach used to sit.

Tuesday, 13 July 2010

Special needs folks have our own vocabulary

When you're a special needs mom, you drop certain words from your vocabulary. Words like 'perfect'... they are erased. Also, the word 'normal' never gets used to described anything, and especially anyone. Then you get new words added, like 'Ruggles' (or regular kids, in the tradition of Harry Potter's muggles, or non-magical folk).

Saturday, 10 July 2010

The FIFA World Cup final and if these four walls could talk

South Africa has been hosting the 2010 FIFA World Cup for the last four weeks, and tomorrow if the final between Netherlands and Spain.

“So, where are we going to watch this historic occasion?” I ask my husband.

Image: An artist's impression of Soccer City

You see, attending any kind of occasion or event is tricky with our Lionheart in tow. We've had plenty of kind friends invite all three of us to braais and - my personal hell - kiddies’ birthday parties. It's not that we’re embarrassed by our special needs boy; in fact I don’t blink when telling strangers who try to befriend my son, “I’m sorry, he’s not being rude when he doesn’t look at you. He’s autistic.” I’ve even thought of having Travis a shirt made that says, “Yes, I’m not making eye contact because you’re ugly.” As a special needs parent, you can infuse these situations with humour or with heartache.

Back to the family outings. Say we’ve been invited to a children’s party. I have to pack all Trav's favourite snacks and toys. Fair enough, that goes without saying for any kid. Then when we arrive, I take his special blanket and place it on the grass, or if it’s raining I have to find a quiet room in the house to spread the blanket out. Now I have demarcated Trav’s “safe zone.” Everything within the boundaries of the blanket is familiar to him and he may just sit and happily play with his toys while mom and dad socialise.

The problem is, parties are loud occasions – with kids squealing with delight, loud Barney tunes and merry renditions of “Happy birthday to youuuuu.” I can’t very well ask the hosts to keep the festivities to a minimum, and Travis inevitably starts to freak out. This means that either dad or mom spends the next few hours patrolling the garden consoling him, while the other party can make small talk with the other guests while anxiously eyeing the situation. Then we swop. We can’t eat together at these gatherings ever. One of us grabs a boerie roll while the other hangs out with Trav, and then we switch. You get the picture?

Morne and I are used to doing our socialising separately. I do book club every now and again, or ‘Moms Night Out’ with the girls from Trav’s school. Morne gets to go out with the boys a couple of times a month, and shoot some pool or watch the rugby, or lately – the 2010 FIFA World Cup matches.

Travis, Morne and I have a small support system, with a few aunties and cousins who offer to take Travis for a couple of hours. Bless you Pet and Eddie, Michelle and Kathrynn, Bev and Ron, and Nikki and Kelly! We just never know which Travis they’re going to get... Giggling, eats-all-his-supper, and plays happily with anything that spins? Or screaming, biting, not-in-his-environment Trav?

So where are we watching the 2010 FIFA World Cup final, being played at Soccer City just down the road from us. You guessed it, at home.

And this is my Living Lionheart bit for the day: making the most of it! Special needs families, we know how important it is to enjoy the moment, without wallowing in the ‘shoulda coulda woulda’.

So tomorrow, I’m curling up on the couch with my one-of-a-kind Travpants sandwiched between me, and the best dad any kid could wish for, and we’re watching the 2010 FIFA World Cup final together.

Call me selfish, but I don’t want to share this moment with anyone other than my boys!

Tuesday, 6 July 2010

Of hotdog eating contests and choo-choo trains

On Sunday night, hubby and I came across this little gem on ESPN while channel-surfing: the Fourth of July hotdog eating contest held every year on Coney Island, New York.

That’s right (in case the obesity stats weren’t a clue), eating is considered a huge sport in the States! Here in South Africa, an activity is only considered a sport if there are vuvuzelas in the crowd, which incredibly there were!

Seeing as though we were about to try tempt Travis with some dinner, we decided to settle in and watch this disturbingly competitive event (not that Travis watches TV).

Special needs kids are usually very picky eaters... and Travis has a sensory integration issue. You know what it feels like to chew wool? My jaw clenches just thinking about it! This is how Travis feels about certain textures. For the last week or two he’s been living on a diet of Weetbix, smoked viennas cut onto circles, power bottles (a mix of sugar, Milo, formula and full cream milk), and by some miracle – he has eaten macaroni and cheese for three nights in a row.

Travis can’t stand things that are too lumpy, so he spits out every couple of mouthfuls – ruining his PJs. Sometimes I take him out of the bath and feed him while he still has his towel wrapped around him. Bib, I hear you say? You try getting him to wear it.

Trav’s endocrinologist has warned us that if he hasn’t picked up enough weight, and grown taller by his next visit – which is in two weeks’ time – he’s putting a feeding tube in his stomach. Of course, this has made both his dad and I a little hysterical come feeding time. It’s only lately that I’ve mastered the art of nonchalantly picking spat-out mouthfuls from Trav’s lap while praising “Good boy! That’s okay” and “Here’s comes the choo-choo train! Open up!”

You lose your temper, and that’s it... No more choo-choo trains go into that tunnel!

Back to the gorge-fest that is the Coney Island 4th of July Hotdog Eating Contest, sponsored by Pepto Bismol.

Joey ‘Jaws’ Chestnut forced down 54 hotdogs – that’s buns and all – in 10 minutes, to win $20,000! In second place came Tim ‘Eater X’ Janus, with a 45 hotdogs and Patrick ‘Deep Dish’ Bertoletti in third place with 37 hotdogs.

I don’t know whether to be envious or nauseous.

Sunday, 4 July 2010

What's inside the fortune cookie?

This blog kicks off with a fortune cookie.

I've been saving it for a moment when I'm feeling particularly low... right now I'm lurking 10,916m below sea level in the Mariana Trench with lanternfish, cookie cutter sharks and bristlemouths. (I like to click 'random article' on Wikipedia when I'm wallowing in self pity, it's a welcome distraction.)

Still, as my late grandmother Dorothy who raised me would say: "Remember that there are lots of people better off than you, girl, but many, many more who have less than you."

Who dragged my Sunday morning into this funk? The evil incompetents at Telkom. We're having a Telkom phone line installed tomorrow - for the sole purpose of upgrading it to ADSL immediately after that (Telkom won't let us do this in one go). I'm not going to get into the details, but basically the guys at the Telkom shop in Clearwater mistakenly made me pay R700 as a deposit, and then after much protesting from me finally decided, 'Hey, maybe I should check out computer system' and saw that they'd made a mistake. Now I have to drive back to Clearwater Mall before 3pm, so that they can give me my R700 back. Morons.

When I finally got home close to tears of frustration, Travis was screaming because he'd just been dressed. Then he screamed because his Weetbix had been mashed (it HAS to still be in its square shape when you feed him). By now, my hubby had enough and was shouting back. Doors slammed. Misery ensued.

What my husband and I figured out early on is that only one of us gets to be angry at a time. Travis struggles to express his feelings, so when he's unhappy or frustrated - which is around 17 times a day, I counted once - he wails, shrieks, bites and pinches. It's not his fault. It’s not our fault. It’s grossly unfair to all parties to be saddled with this nightmarish state of affairs.

So this morning, I get to be good cop. Thank goodness this cop isn't armed with a nightstick or every coffee mug standing on the kitchen counter would have been assaulted while in custody.

This brings me to today's Special Needs Parenting 101 topic: self pity. It's so easy to feel sorry for yourself, for your husband, and for your child. When you're having a bad hair day, it's far too simple to stuff all your troubles into one laundry bag.

Today I stuffed these extra dirty thoughts in that spin cycle:
"I'm turning 30 and have accomplished none of my dreams."
"I'm working two jobs and can't make ends meet."
"I'll never hear my son call me 'Mom'."

Part of Living Lionheart is having courage. Super human courage. The stamina and the will to push forward despite your family's disability - because when your child has special needs, you all have special needs.

There are families out there who are worse off than you.

And the fortune cookie I've just cracked open? It reads...

"It seems everything will now go your way."