Deal­ing with dif­fer­ence

Fam­i­lies come in all shapes and sizes; here’s how to be sen­si­tive

Your Baby & Toddler - - Contents -

AS PAR­ENTS, we all want our chil­dren to be happy and healthy: ten fin­gers, ten toes and a big smile. The truth is, ev­ery fam­ily faces dif­fer­ent chal­lenges, some more ob­vi­ous and un­ex­pected, for oth­ers more per­sonal or seem­ingly mun­dane. But ev­ery fam­ily has a story to tell, and ev­ery­one deals with chal­lenges dif­fer­ently. Here are some in­sights into what par­ents wish ev­ery­one else knew about be­ing a fam­ily that is con­sid­ered “dif­fer­ent”, or who are fac­ing un­ex­pected chal­lenges. HE IS NOT BE­ING NAUGHTY, HE HAS ASPERGER’S “Ben just doesn’t un­der­stand cer­tain so­cial cues, those cues that we all pick up with­out even re­al­is­ing it. He has Asperger’s syn­drome,” says mom Wendy Bow­ley. “What may come across as naughty or in­ap­pro­pri­ate be­hav­iour, or a lack of emo­tion, is just him not un­der­stand­ing the sit­u­a­tion prop­erly, and this leaves him over­whelmed and anx­ious. He is not be­ing naughty, he is just scared and con­fused. And he knows it – he tries so in­cred­i­bly hard and he gets so up­set when he gets it ‘wrong’. My heart goes out to him be­cause he works twice as hard as other chil­dren with his end­less ther­a­pies and in­ter­ven­tions, but he never com­plains and al­ways tries his best. I don’t think peo­ple think about what it might be like to be a par­ent of a child who sees the world dif­fer­ently – I know that I didn’t be­fore we had Ben – but what we, and Ben, need is com­pas­sion and kind­ness, not judge­ment or thought­less­ness.” THINK BE­FORE YOU ASK QUES­TIONS “It is the in­tru­sive­ness with which peo­ple ask ques­tions about Liam, the way in which they speak over him, don’t talk to him, the way in which strangers come up to us in the mid­dle of a lunch or shop­ping cen­tre and say, ‘What is wrong with him?’, or ‘Why does he look like that?’ that I find very, very dif­fi­cult and makes me very an­gry,” ex­plains Alice Li­ons. Her son Liam has a rare auto-im­mune con­di­tion called alope­cia, in which his hair fol­li­cles are at­tacked by his im­mune sys­tem, leav­ing him with a patchy, al­most bald look. “As a psy­chol­o­gist, I un­der­stand that peo­ple ask ques­tions to try and make sense of and un­der­stand it, but usu­ally those ques­tions are at Liam’s ex­pense.”

“Chil­dren with alope­cia are oth­er­wise very or­di­nary, healthy chil­dren and grow and de­velop just like ev­ery­body else, so on the one hand I wish peo­ple knew that, and did not treat him with kid gloves,” ex­plains Alice.

“But I also wish peo­ple knew that chil­dren with alope­cia are par­tic­u­larly vul­ner­a­ble to de­pres­sion, and that Liam car­ries a heavy load for a child his age and some­times a quiet­ness is very help­ful. The gap­ing cer­tainly isn’t.” DON’T SKIRT AROUND THE IS­SUE “It is about be­ing open and hon­est with ev­ery­one, your chil­dren too, and all the peo­ple in­volved in their lives, so that ev­ery­one feels em­pow­ered to man­age it,” says Tracy Prowse, mum to Cat, who was di­ag­nosed with ver­bal dys­praxia and un­der­ly­ing devel­op­men­tal co­or­di­na­tion disor­der (DCD) when she was 18 months old. Dys­praxia is a prob­lem with the plan­ning and pro­cess­ing of move­ment, and af­fects any­thing to do with out­put such as talk­ing, writ­ing, phys­i­cal co­or­di­na­tion and motor skills. “So al­though it’s not at all in­tel­li­gence-based, to many Cat will come across as ‘stupid’ be­cause her ex­pres­sion and move­ment is slower, harder, un­co­or­di­nated, jerky and awk­ward,” says Tracy. “She ac­tu­ally has above av­er­age IQ, she just has to work much harder to get her mes­sage out.” Tracy adds: “I also wish par­ents ac­knowl­edged the im­pact of hav­ing a sib­ling with chal­lenges has on the rest of the chil­dren in the fam­ily. It can be re­ally tough al­ways cop­ing in your sib­ling’s shadow. I want peo­ple to know that Cat has been my teacher, and made me a

bet­ter per­son. I am softer, more flex­i­ble and for­giv­ing be­cause she is my child.”

THERE IS NO SUCH THING AS NOR­MAL “I took it for granted that my chil­dren, and other peo­ple’s chil­dren, were just healthy. I don’t take that for granted any more,” says Jess Gretchel, a mom of three, whose youngest, Timo, wears a hear­ing aid. “You as­sume ev­ery­one else is okay, ‘nor­mal’, and from the out­side it does look like that, but the truth is ev­ery­one has some or other is­sue that they are deal­ing with – we just don’t al­ways see them. So, since find­ing out that Timo has a hear­ing im­pair­ment, I am much more aware and sym­pa­thetic to any chal­lenges peo­ple and fam­i­lies are fac­ing, be­cause the truth is ev­ery­one is fac­ing some­thing in their lives.”

BE SEN­SI­TIVE TO THE DIF­FER­ENCE IN EV­ERY­ONE Claire Horn and Rob Mckay adopted their third child, Shaun, when he was 8 months old. “While I ap­pre­ci­ate peo­ple’s hon­esty, some of the ques­tions peo­ple ask re­ally throw me; that and the fact that they will ask re­ally per­sonal and can­did ques­tions when Shaun is stand­ing right there, like he is not lis­ten­ing,” says Claire.

“They’ll ask ques­tions like: ‘Do you know his mother or fa­ther?’ Um, yes… very well, ac­tu­ally: I am his mother, but no, I don’t know his bi­o­log­i­cal mother. ‘Do I know any­thing about him?’ Yes, I know ev­ery­thing there is to know about him. In terms of his ge­netic pro­file, the ge­netic mix in my birth chil­dren is so dif­fer­ent and un­ex­pected that not ‘know­ing’ any­thing about Shaun’s ge­netic pro­file doesn’t bother me at all. ‘Have the other chil­dren ac­cepted him?’ Ab­so­lutely, in the same way that any child is put out by the ar­rival of a sib­ling, and then learns to ac­cept them and life car­ries on. ‘Do you love him like you love your other chil­dren?’ Of course I don’t love him like I love my oth­ers, but not be­cause he is not my bi­o­log­i­cal child, but be­cause he is a dif­fer­ent per­son. I love each child in­di­vid­u­ally.”

Al­though through their pro­fes­sions as a phys­io­ther­a­pist and a teacher, Claire and Rob have al­ways been sen­si­tive to the chal­lenges fam­i­lies face, Claire says she is now more sen­si­tive to peo­ple’s sto­ries and the way they tell them: “I will al­ways of­fer my own story be­fore ask­ing about some­one else’s.”

“I also want peo­ple to know that once you adopt a child, you re­alise that it is just a child, a child who wants to be loved,” says Claire. “All those ques­tions and fears fall away, noth­ing else mat­ters. So, if you think, for even a split sec­ond, that you could adopt a child, then go with that. In fact, I think ev­ery­one should adopt a child.” WHO IS DIS­AD­VAN­TAGED? NOT MY CHIL­DREN… Migo Manz, whose two chil­dren with his life part­ner Ger­hard were born via sur­ro­gacy, says, “We are just two peo­ple who love each other and cre­ated a fam­ily – just like any other cou­ple who love each other and de­cided to spend their lives to­gether. We deal with the same is­sues as all other fam­i­lies: rais­ing kids with as much love, at­ten­tion and fo­cus on val­ues as pos­si­ble.”

“Be­ing a par­ent is just amaz­ing (hard too), no mat­ter how you be­came one, and a child is just a child, no mat­ter how they were born. We don’t re­ally care about ‘bi­o­log­i­cally re­lated’; this is pure van­ity for me,” says Migo.

“If I care for a child from the sec­ond it sees the light of this earth, then it is my child. I do wish peo­ple knew that so much psy­cho­log­i­cal re­search shows that chil­dren born into or raised in fam­ily sit­u­a­tions that are ‘dif­fer­ent’, or those that have faced dif­fi­culty, are more re­silient, are bet­ter able to cope with life, and are more suc­cess­ful, ful­filled adults – they are not the dis­ad­van­taged ones.”

No mat­ter what chal­lenge or is­sue a fam­ily is fac­ing, or you think a fam­ily must be fac­ing, the theme is the same: be sen­si­tive; there is no “nor­mal”; and as au­thor Brad Meltzer says, “Ev­ery­one you meet is fight­ing a bat­tle you know noth­ing about. Be kind. Al­ways.” YB

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