Ed­u­cat­ing Rosie

EVERY WORLD DOWN’S SYN­DROME DAY SINCE 2014, JAMIE McCAL­LUM HAS WRIT­TEN FOR THESE PAGES ABOUT THE JOYS AND CHAL­LENGES OF RAIS­ING A CHILD WITH THE CON­DI­TION. NOW ROSIE IS FOUR AND NEARLY READY FOR SCHOOL, WHAT CAN SHE TEACH US ABOUT THE WAY WE ED­U­CATE OUR C

Sunday Herald - - 19.03.17 THE BIG READ -

I’M sorry to say that your child has a con­di­tion. If you choose to go ahead with the preg­nancy, she will have a 42 per cent chance of de­vel­op­ing can­cer in her life­time, a 17 per cent chance of a stroke. Here is a leaflet de­tail­ing many of the other risk fac­tors. We have a ter­mi­na­tion slot booked for you to­mor­row morn­ing in case you need it. The de­ci­sion is en­tirely yours to make. We will sup­port you what­ever you de­cide to do.”

Imag­ine you and your part­ner are at your 20-week preg­nancy scan. A som­bre med­i­cal pro­fes­sional takes you into a room and de­liv­ers this news. What would you do? Con­tinue with the preg­nancy? Take the ter­mi­na­tion slot? Per­haps you need time to think about it more deeply. If you’re tak­ing time to think then you’re at least con­sid­er­ing the pos­si­bil­ity that these risks are not a bur­den you wish to take on.

What if I now told you that the con­di­tion in ques­tion was the hu­man con­di­tion? That these risks are the av­er­age hu­man risks for these dis­eases, so every child ar­rives with those odds? That if you were con­sid­er­ing tak­ing that ter­mi­na­tion slot, then it was for a healthy child? You see, la­bels mat­ter. When peo­ple are de­hu­man­ised with la­bels, like a bunch of statis­tics or the name of a con­di­tion, they be­come that con­di­tion be­fore any­thing else. It’s al­most im­pos­si­ble to form a bal­anced view be­cause the other side – the pos­i­tive side to hav­ing any child – is hard to put into words, let alone bul­let points in a leaflet.

Our daugh­ter Rosie has Down’s Syn­drome. It’s a con­di­tion that peo­ple see first when they look at her. The la­bel fol­lows her ev­ery­where she goes and al­ways will. She turned four this month and, since she was a year old, I have fol­lowed her jour­ney on these pages around the time of World Down’s Syn­drome Day, March 21.

My wife Vic­to­ria and I are not just par­ents of one child with Down’s Syn­drome, but of three chil­dren. Rosie’s sis­ter, Abi­gail, is six. Her brother, Gre­gor, is two. The big­gest chal­lenge of this last year has been weigh­ing up the com­plex fam­ily jig­saw puz­zle pre­sented to us when de­cid­ing which school would be best for Rosie to at­tend in 2018, and con­se­quently, which nurs­ery she should be in right now.

How­ever, as I sit here writ­ing that claim about our “big­gest chal­lenge”, all three kids go scream­ing past me on a toy horse, with Rosie dressed as a la­dy­bird. Right on cue they re­mind me that the truly great­est chal­lenges fol­low­ing her ar­rival re­main the very or­di­nary chal­lenges faced by all par­ents just to get through most days. If you wit­nessed Pro­fes­sor Robert Kelly’s BBC News in­ter­view be­ing hi­jacked by his chil­dren last week, then you can de­rive some sense of life in our house.

As well as as­sess­ing how in­clu­sive schools are and which is the best fit for Rosie’s de­vel­op­ment, Vic­to­ria and I have had to think about the ef­fect of our de­ci­sion on the whole fam­ily. What about the lo­gis­tics of two sep­a­rate schools? Might we need to move closer to an es­tab­lish­ment that suits Rosie’s needs? Then we felt very guilty con­sid­er­ing how that might af­fect Abi­gail, who’s al­ready set­tled and in pri­mary two.

For her part, Rosie ap­peared to adapt hap­pily into every nurs­ery school en­vi­ron­ment we vis­ited within mo­ments. “Sand­pit? Check! Other chil­dren to play with? Check! Right, I’m in!” So much so that we of­ten ques­tioned whether mak­ing her the fo­cal point of this fam­ily de­ci­sion was the right thing to do at all.

Look­ing for a school suited to a child with spe­cial ed­u­ca­tional needs (SEN), we ex­pe­ri­enced a side to the ed­u­ca­tion sys­tem that most peo­ple sel­dom need to think about. It’s also the first sce­nario we’ve en­coun­tered where Rosie’s “la­bel” be­came sig­nif­i­cant.

“How did she get on?” we asked af­ter her first day at nurs­ery.

“Well, I have an­other five chil­dren to look af­ter you know,” replied the teacher.

Many weeks later, the same teacher was de­scrib­ing how watch­ing the chil­dren all play­ing to­gether with Rosie and hav­ing a great time melted her heart.

Rightly or wrongly, peo­ple see Down’s Syn­drome first (which they view as a bunch of prob­lems) and Rosie next. Once they see past her con­di­tion, they don’t love her “just the way she is”. They love her be­cause of the way she is. There’s a dif­fer­ence. Down’s Syn­drome is her ge­netic pro­file. Every cell of her body is made of it. It is her and she is it. It’s not an ill­ness. Wish­ing she didn’t “have” Down’s Syn­drome would be a com­plete ir­rel­e­vance. Like wish­ing your Chi­nese friend didn’t “have” be­ing Chi­nese. Or like you wished for a whole dif­fer­ent child in her place.

While we’ve been eval­u­at­ing schools, the Scot­tish ed­u­ca­tion sys­tem has been un­der the me­dia spot­light ac­cused of fail­ing chil­dren with spe­cial needs. This was trig­gered by En­able Scot­land’s 2016 re­port #In­cludEd In The Main?! which con­tained some damn­ing statis­tics on the gov­ern­ment’s in­clu­sion pol­icy.

At the mo­ment, Scot­land’s ed­u­ca­tion sys­tem has a pre­sump­tion of main­stream school­ing for all chil­dren. Spe­cial needs re­quire­ments are as­sessed and plugged into the main­stream en­vi­ron­ment as re­quired. Sup­port bases are avail­able for dif­fer­ent spe­cific needs. Split place­ments be­tween main­stream and spe­cial needs schools are also com­mon­place. It’s all part of the ap­proach known as GIRFEC – Get­ting It Right For Every Child.

As I’ve writ­ten be­fore, the ef­fect of this ap­proach on the feel­ing of in­clu­sion for the SEN kids, their so­cial de­vel­op­ment and the in­clu­sive at­ti­tudes de­vel­oped by the other chil­dren has been very pos­i­tive in­deed. How­ever, I’m now start­ing to won­der if this pol­icy has been a brief nir­vana that is un­likely to be sus­tained for much longer. The trou­ble is, when money is tight spe­cial needs sup­port fal­ters. With­out sup­port, you sim­ply have chil­dren with ad­di­tional needs thrown into main­stream classes. This puts an in­creas­ingly high de­mand on one teacher to ed­u­cate a full class across mul­ti­ple lev­els of learn­ing abil­i­ties and sup­port needs. Then ev­ery­one loses. This, it seems, is what is hap­pen­ing.

The re­sult is that chil­dren like Rosie are not al­ways wel­come. I don’t be­lieve that’s be­cause the teach­ers don’t want pupils like her. I think teach­ers are con­flicted. Most gen­uinely want to be in­clu­sive, but don’t want to fail the chil­dren – which they know will hap­pen if the sup­port is not there.

They’d be right, too. It’s hard to imag­ine that you could ever claim you were “Get­ting It Right For Every Child” when in­te­grat­ing SEN kids with­out plugging in the right sup­port. If it then causes a knock-on ef­fect to other stu­dents then you’re get­ting it wrong for most. If this trend con­tin­ues, it’s in­evitable that SEN chil­dren be­come a hot potato whom schools would rather not take on at all. Thank­fully, this still seems to be in the mi­nor­ity of cases. In our quest to find what will work best for the whole fam­ily we’ve vis­ited many schools. We’ve met pas­sion­ate, keen, en­thu­si­as­tic, in­clu­sive teach­ers. But we’ve en­coun­tered some dis­cour­ag­ing at­ti­tudes too. In mak­ing up our minds whether a school was right for our child, some­times what turns out to be im­por­tant is what is not said, or the tone of the con­ver­sa­tion, rather than its content. As a par­ent, some­times all you re­ally need is a sense that the school gen­uinely wants your child to go there. This is how you feel when the teacher in front of you is burst­ing with en­thu­si­asm about the new ini­tia­tives and spe­cial­ist train­ing that the school might un­der­take to help Rosie. If, in­stead, they fo­cus on prob­lems that haven’t hap­pened yet – such as them call­ing you into the nurs­ery if her nappy ever needs changed – then it’s def­i­nitely not how you feel. On this front, I feel like our ed­u­ca­tion sys­tem is re­gress­ing. Yet I at­tend my older daugh­ter’s school and see im­mense progress in teach­ing meth­ods and the use of tech­nol­ogy com­pared to when I was there. Where ed­u­ca­tion is con­cerned, how­ever, it’s im­por­tant that gov­ern- ments sus­tain progress on all fronts – not just the ar­eas that de­liver ef­fi­cient au­toma­tons for the work­place. Ed­u­ca­tion should be for more than just that. If we want to fend off “the ro­bots tak­ing over” then we need to strive to be more than ro­bots our­selves. Our value is in­creas­ingly mea­sured on a set of scales with pro­duc­tiv­ity on one side and cost-to-main­tain on the other. Ad­mit­tedly, it’s pos­si­ble that Rosie’s scales may be tipped in the wrong di­rec­tion for that model. A non-vi­able hu­man, in some peo­ple’s opin­ion, with the rich di­ver­sity ben­e­fits that she brings quashed by for­mu­lae in a spread­sheet. What about hap­pi­ness – re­mem­ber that? What con­sid­er­a­tion do gov­ern­ments give to what peo­ple con­trib­ute to in­creas­ing hap­pi­ness in so­ci­ety?

IF the con­tri­bu­tion of hap­pi­ness were truly a barometer in com­mon use then ba­bies with Down’s Syn­drome would be the new de­signer ba­bies. In our house, barely a day goes by with­out some kind of hi­lar­ity. There’s an un­mis­tak­able cry that goes up, when­ever some Rosie-based mis­chief has oc­curred. On hear­ing it, you’ll in­evitably dis­cover Gre­gor some­where like the cat’s cage, hav­ing been lured there by Rosie, who then locked him in and ran away.

If so­ci­ety were op­er­at­ing as it should, you would as­sume that know­ing the ideal so­lu­tion for our daugh­ter’s ed­u­ca­tion would make it just so. Then you re­alise the bud­get is not avail­able. Our ed­u­ca­tion sys­tem in 2017 is not ideal. It is make-do.

On Rosie’s fourth birth­day, with a school de­ci­sion loom­ing, we found our­selves look­ing back on some of the hos­pi­tal pho­tos from the day she was born. In the most ir­ra­tional way you can imag­ine, I be­came spon­ta­neously up­set. See­ing those mo­ments again, that hos­pi­tal room, the fam­ily visi­tors, my forced smiles for the camera. I never en­vis­aged when I en­abled Google photo backup that it would one day serve as an emo­tional time ma­chine trig­ger­ing a kind of post-trau­matic stress dis­or­der. It might sound ex­treme, but as read­ers of my first Sun­day Her­ald ar­ti­cle will re­call, dis­cov­er­ing our daugh­ter had Down’s Syn­drome re­ally was that much of a shock to me at the time. It was as though our world had come to an end.

Four years on, it turns out that the mes­sen­ger of de­struc­tion was a happy, mis­chievous wee girl. A cun­ning dis­guise.

I sup­pose what is up­set­ting now is how un­nec­es­sar­ily up­set I was then. Be­cause the pic­tures don’t match the mem­ory. They aren’t show­ing a night­mare at all. They’re show­ing a beau­ti­ful baby in a ma­ter­nity ward and fam­ily visi­tors. There’s no night­mare. No suf­fer­ing. All that was needed was a dif­fer­ent mind­set and I’d be re­call­ing a very dif­fer­ent emo­tion now.

Per­haps I’d have had the mind­set I needed if prop­erly sup­ported SEN in­te­gra­tion had been around in my school days. It is a gift that we should in­sist on giv­ing as a le­gacy to fu­ture gen­er­a­tions. No-one should lose the cher­ished mem­ory of the birth of their baby girl be­cause of ig­no­rance.

If only my smart­phone’s time travel ca­pa­bil­i­ties worked the other way. I’d send the 2013 me a mes­sage to show him how far he’s come. I know that he’d find the most sur­pris­ing as­pects of our lives to be those which are to­tally mun­dane. I’d show him a nor­mal birth­day party where he’d see his beau­ti­ful daugh­ter wear­ing her new mer­maid dress. He’d also marvel at how ter­ri­ble his par­ent­ing got in four years as he wit­nessed his kids eat­ing birth­day cake for break­fast.

Rosie has ar­rived at an in­cred­i­bly com­plex and po­larised time for her con­di­tion. On one hand, the op­por­tu­ni­ties have never been greater and, for all its re­ported fail­ings, our ed­u­ca­tion sys­tem is still of­fer­ing her a gen­uine op­por­tu­nity to in­te­grate and carve out a fully in­de­pen­dent life for her­self. On the other hand, we hear cred­i­ble ethi­cists ad­vo­cat­ing screening, ter­mi­na­tion and, if all else fails, in­fan­ti­cide for chil­dren with her con­di­tion.

It’s an ex­cit­ing and daunt­ing time for us all be­cause we’ve been able to ar­rive at a de­ci­sion and, next year, Rosie will have a school that wants to have Rosie. I knew it was right when Vic­to­ria ar­rived home in tears of joy and re­lief re­cently be­cause of the school’s proac­tiv­ity and en­thu­si­asm.

We sim­ply want Rosie in­cluded, not ex­cluded. Taught, not babysat. We want her to have real friends – both typ­i­cal chil­dren and chil­dren with chal­lenges. To play. To grow as a hu­man be­ing. To learn to func­tion in so­ci­ety. To be ca­pa­ble of work­ing. To value her­self. To re­spect oth­ers.

As I take a step back and read those as­pi­ra­tions it makes me re­alise – that’s noth­ing less than we should want for every child. If that’s true, we should fund an ed­u­ca­tion sys­tem that de­liv­ers it.

Rosie, right, and above with sis­ter Abi­gail, brother Gre­gor, dad Jamie and mum Vic­to­ria Pho­to­graphs: Kirsty An­der­son

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