Spe­cial needs

Amy­oli Ngewu is magic!

Your Baby & Toddler - - Contents -

IN MANY WAYS, Amy­oli Ngewu is a typ­i­cal 5-year-old. She loves bal­let, prac­ti­cally lives in her swim­ming cos­tume and runs ev­ery­where. “She says she’s Caster Se­menya!” laughs her mom, Sam­mie (26).

She also adores school. This is her third year at St Vin­cent School for the Deaf in Jo­han­nes­burg, and last year she had a lead role in the school’s per­for­mance of Dis­ney and Pixar’s In­side Out. “She’s that child that they would pick, be­cause she’s not shy. She loves peo­ple!”

Yet Amy­oli’s first years have been any­thing but straight­for­ward. When she was 7 months old, her mom no­ticed that she wasn’t bab­bling like other ba­bies. She didn’t en­joy play­ing with toy rat­tles and wouldn’t re­spond to loud sounds.

PRO­FOUND DEAF­NESS

Doc­tors soon con­firmed Sam­mie’s fears: Amy­oli was deaf. She was di­ag­nosed with con­gen­i­tal bi­lat­eral sen­sorineu­ral hear­ing loss, which means she was born deaf in both ears. She also has au­di­tory neu­ropa­thy spec­trum disor­der (ANSD).

In 2014, Sam­mie de­scribed the di­ag­no­sis as a “tremen­dous blow” that left her “con­fused, be­wil­dered and sad”.

De­spite feel­ing vul­ner­a­ble and over­whelmed – es­pe­cially after Amy­oli’s dad left the fam­ily – Sam­mie tack­led her new chal­lenge with ev­ery­thing she had. She did re­search, took Amy­oli for speech and oc­cu­pa­tional ther­apy (her in­ner ear dam­age had a se­vere ef­fect on her bal­ance and move­ment), and they both started learn­ing South African Sign Lan­guage.

How­ever, Sam­mie still hoped for “to­tal com­mu­ni­ca­tion” – in other words, ver­bal speech. A cochlear im­plant, she hoped, would bring them closer to that dream.

COCHLEAR IM­PLANT

An im­plant by­passes the dam­aged parts of the in­ner ear by send­ing elec­tronic sig­nals straight to the au­di­tory nerve. Im­plants can’t cure deaf­ness, but can help the brain process sound bet­ter.

Sam­mie’s med­i­cal aid agreed to cover a big por­tion of the cost, but she was still left with a R80 000 short­fall. What’s more, to get the most out of her im­plant, Amy­oli would need in­ten­sive speech ther­apy for years after the op­er­a­tion.

Sam­mie took to Twit­ter. “Let’s rock her world,” she wrote in one of her pleas for fund­ing. After a jour­nal­ist picked up Amy­oli’s story, do­na­tions started com­ing in. A big cor­po­rate spon­sor­ship fi­nally helped them reach their tar­get, and so in Au­gust 2014, Amy­oli got her im­plant from the Univer­sity of Pre­to­ria’s Cochlear Im­plant Unit.

It took Amy­oli a lit­tle while to get used

to her new world of sound. Be­fore long, how­ever, she started point­ing out noisy buses, learnt new words, and ex­pe­ri­enced the sound of rain for the first time.

CHAL­LENGES

Amy­oli can now hear loud sounds and noise, in­clud­ing the sound of on­com­ing cars, which has given Sam­mie more peace of mind for her safety. But while the im­plant has done won­ders for Amy­oli’s hear­ing and bal­ance, mother and daugh­ter still face many chal­lenges.

For one, speech ther­apy is very costly. And then there’s the con­cern that some­body will snatch the pro­ces­sor the child wears, think­ing it’s an ex­pen­sive blue­tooth de­vice. “I’m al­ways on the look­out,” says Sam­mie. “We have to pro­tect it with all we’ve got, be­cause it’s so ex­pen­sive and so pre­cious to us.”

And even though Amy­oli now re­sponds to sound, her re­ac­tions are still de­layed. “At the end of the day, she’s still a pro­foundly deaf child. When the im­plant is off, when it’s bath time, she’s deaf.” So when they want to com­mu­ni­cate then, they have to sign.

A BEAU­TI­FUL LAN­GUAGE

South African Sign Lan­guage (SASL) is Amy­oli’s first lan­guage. “It’s a beau­ti­ful lan­guage,” says Sam­mie. “It re­ally is.” Be­cause of SASL, Amy­oli is now able to tell her mom about her day at school, and she’ll be able to tell her if some­thing bad hap­pens or some­body mis­treats her.

Sign­ing has also taught Sam­mie a lot of pa­tience. “You can’t just ask, ‘How are you?” when you’re walk­ing home and you’re two steps ahead of her. I’m so pa­tient now. I’m never in a rush. I will put ev­ery­thing down on the side of the road, and then we talk.”

Com­mu­ni­cat­ing with her daugh­ter is some­thing she’ll never take for granted. “I’m al­ways telling her that she mat­ters. That she can be any­thing. This year, I told my­self to stop wor­ry­ing about ther­apy and money and ev­ery­thing else. We’re go­ing to fo­cus on keep­ing ev­ery dream alive.”

“I want her to be the best she can be, be­cause she is magic.” YB

I’M AL­WAYS TELLING HER THAT SHE MAT­TERS. THAT SHE CAN BE ANY­THING

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