Hindsight is an illuminating thing

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I am Lu, I live with my partner Derek and my two sons, Nathan aged 8 and Billy aged 6. Billy has Down’s syndrome (DS). Both my boys are brilliant and of course I love our family unit. I have to say that I haven’t always been comfortable with Billy’s diagnosis, this may have been down to the negativity and lack of support I received when DS was detected. Let me explain…

…….Our first round of antenatal screening detected a 1 in 100 chance of the baby having DS. That’s OK we thought, we don’t need to know. The anomaly scan at 21 weeks showed nothing unusual ; ‘congratulations your baby is completely normal’ the consultant sonographer informed us. The terminology now gets under my skin, what is ‘normal’ anyway but at the time it went over my head.

At 30 weeks duodenal atresia was detected in the baby – this is a condition in which the first part of the small bowel has not developed in to a tube but is closed. This is very common in babies with DS so we decided to have an amniocentesis at this point to be sure and be prepared. We were given the results over the phone and asked to come in to hospital to talk about life with a child with DS. The midwife we came to ‘discuss’ it with, said she didn’t know much about DS and did we want a leaflet? She handed over a wholly inappropriate booklet but it was the only one she could find. It was from an American DS research company and contained some great statistics about DS and childhood leukaemia not to mention early onset dementia –no wonder I wasn’t very comfortable with the diagnosis!! When we went to ‘discuss’ this with the same consultant sonographer, he remembered that we wouldn’t have terminated the pregnancy and just told us that ‘nothing had changed’. Hindsight is very illuminating thing and retrospectively I think he was trying to put a positive spin on my baby who will battle leukaemia and dementia …….as you can tell my pregnancy brain was not thinking logically and inside I was fuming!! Nothing had changed???? Nothing had changed??? The only thing that HADN’T changed is that we were having a baby!

No support was offered, no explanations of what life with DS might mean. I was in a panic, I wasn’t strong enough to cope with a disabled child, I didn’t know anyone with DS. Do they speak, do they walk, do they learn, are all adults with DS badly dressed and have bad haircuts and hold on their elderly mothers hand while in the supermarket? Blimey I wish I had heard of PSDS back then! Literally all the knowledge I had of DS was a VERY out-dated stereotype!
Thankfully I didn’t have much time to panic as Billy arrived 6 weeks early and parental instincts took over. Billy had his corrective bowel surgery within one day, I really don’t remember feeling out of control, just quietly terrified.

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When I had finally calmed down, being surrounded by the comforting arms of Portage (a home-visiting educational service for pre-school children with additional support needs and their families) and had had appointments with paediatricians, I finally realised that we had another wonderful son. This one would have different challenges but with help we could cope together.

We have been members of PSDS since 2011 and honestly it has been one of the best things we have done. PSDS are so positive about DS and that still affects me profoundly. Why shouldn’t we be positive about DS? Our children are clever, cheeky, stubborn, naughty, fun…everything other children are but they have an extra bit of cute with that extra chromosome!

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Now, 6 years down the line I think ‘it’s only bloody Down’s syndrome’, (when I’m having a difficult day I think ‘bloody Down’s syndrome!”). Yes, Billy has challenges but they aren’t insurmountable. If we can’t meet the challenge head on, we go round and find another route, we cope. I’m not saying it has been easy, it hasn’t, there are endless hospital appointments, regular blood tests (very traumatic when your blood vessels are nearly invisible) not to mention the chasing of appropriate support at school, developmental targets which need to be practiced and the bucket load of patience you need which can sometimes be the toughest obstacle. Conversely it isn’t all tough, Billy is still a brilliant son and brother (did I already mention the extra bit of cute?!)

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My journey with DS (and it is a journey) has motivated me to talk to midwives about how important their language is when giving a diagnosis of DS…not to use the words ‘risk’, a term which infers danger, harm or loss, or ‘sorry’ which infers sadness, distress or pity. Professionals need to make sure that “congratulations” is among the first words new parents hear. Changing the language used with DS is so simple, costs the NHS nothing and makes such a difference to the start of the DS journey.

Also together with our local DS support group and an extremely supportive midwife supervisor, I have developed a ‘Congratulations pack’ which will be given out to new parents as soon as their baby is born. It contains appropriate Down’s Syndrome Association leaflets, Portage leaflets, PSDS leaflets and information about where to get DS support. The aim, locally at least, is that new parents are properly informed about DS and are signposted where they can get appropriate advice and support should they need it. I want to show new parents that DS is probably not what they would have wished for but it WILL be OK. Hopefully new parents won’t be as scared, bewildered or as ridiculous as I was!

I have also talked to year 6 children at Billy’s school to emphasise that it is OK to be different and like any other person they come across in life they should be accepting of the differences. Inclusion is definitely a 21st century phenomenon and in some ways our children have been born at the best time (don’t get me started on the non invasive pre natal test!).

Six years since the start of my DS journey and I now consider myself a bit of an expert. Most of my friends have children with DS, the children have fashionable hair dos and are dressed fabulously. As I said, hindsight is such an illuminating thing.

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