November 04, 2013 - 12:46 PM
CHALLENGES ARE SHARED BY AN ENTIRE FAMILY
KAMLOOPS - There's nothing Jaxon Leader can't or won't get into. The four-year-old will find his way in. If it's locked, he'll put all his energy into the challenge and find a way. Baby locks won't hold him back and neither will duct tape, security gates or tricks.
For the moment, his parents have control of the fridge. They risk everything if they slip up and he sees how they have it locked down but they know he will figure it out. They guard that secret at all costs.
It's one of the dichotomies of his rare combination of conditions which includes autism. He has his challenges, but some of his skills seem superhuman and they pose their own problems. He once drank from a bottle of sunscreen, has eaten dish soap tabs, chomped a bite out of dad's deodorant. And yes, he is capable of making plenty of noise and will be running stark naked before anyone notices. Those tendencies, displayed in front of prospective landlords, are what got his parents booted from potential home rentals in September. As difficult as that makes life for the entire family—mom, dad, brother, grandma, grandpa, uncle—they are prepared for the long haul.
"He will most likely always be dependent on us," says his mother, Laura Leader, 25.
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So far, the young family has shared his special needs as a group. After several landlords kicked them to the curb, it forced them to get closer—literally. The family of four lives in a single bedroom. If adults are incapable of compassion, they worry how school mates will treat him in school.
Jaxon is a handful because first of all—he's four, something his parents are constantly reminded of by others. He was also born with a rare combination of medical conditions: two genetic disorders, asthma and autism. He also doesn't taste or feel much pain. He has severe acid reflux, once so bad Jaxon's throat was left scarred, leaving his voice deep and raspy.
His genetic disorders — Trisomy 9 and Monosomy 14 — along with mid-range autism have made him a medical spectacle. One of a kind, according to doctors who marvel at how the combination served to keep him alive and that brings hope. He has the communication barriers of autism but he's learned about 30 words when doctors thought he would learn none. However there are no fewer challenges and even more uncertainty. When Jaxon was diagnosed with autism roughly six months ago, the Leaders were told he had the cognitive abilities of an 18-month-old. That's like the Terrible Twos for a lifetime.
"He throws, hits, headbutts you, pulls your hair, pulls your face close, gets into everything," Laura says.
"WHEN THEY'RE LITTLE THEY DON'T SEE ANY EVILS"
Difficulties, yes, but he also has incomparable charms. Jaxon runs through the house, fired up with energy before stopping for some affection from Mom. Before you turn, he's in a chair, kicking his feet together, but only before jumping up, stealing his two-year-old brother's juice and taking off in the other direction. A track star would have trouble keeping up with him.
He requires constant care and likely will never live independently. Daycare costs are sky-high for a child who isn't potty-trained. That means Laura stays at home, never farther away than arms length — while her husband works to support them. It'd be tough to pry Jaxon away from her anyway, clinging to her as he does and not letting her go.
Laura is naturally shy and seems uncomfortable speaking about the situation, but says she doesn't mind. He's her son, he needs her and he has her heart so perhaps it's hard to use the word 'sacrifice' but they make plenty of them. They won't go out for dinner for risk Jaxon will slip between them while sandwiched into a booth and take off from the table. Or hit a picture off the wall as he's done before.
But dinner dates are the least of their worries. It's the simple things like a full night's sleep that are out of reach. Jaxon's acid reflux has him often up all night in their shared bedroom waking up his little brother. Sleep is an issue for dad, who works odd shifts and on call. They've managed to fit in one bedroom in their parents' home by purchasing a bunkbed for the boys, but after their encounters with landlords, they are grateful for it and wondering where they would be without Jaxon's grand-parents.
"I just don't think that people necessarily realize what the parents and the immediate family go through," says Megan Leader, Laura's mother-in-law.
Now it's a full house in Barnhartvale, more than most could handle, but the Leader family wants no sympathy. They only wish for awareness and understanding.
"I say sometimes he's going to have the best life ever because he has so many people who love him — truly, truly love him, but he won't know about the discrimination," Megan says. "When they're little, they don't see any evils."
Just like the child gates, locks, communication barriers and discrimination, he doesn't see the challenges. The Leader family knows that if everyone got to know Jaxon — he'd find his way into their hearts, like he finds his way into everything else.
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News from © InfoTel News Ltd, 2013