What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Thursday, 21 August 2014

Take exams, pass exams; fight..............

In 1979 I opened my O Level results in front of my expectant family. I did badly. I retook and went on to do OK in life. That's my CV in a tweet. 

So, this morning I crawled up the wall as Down's Bro went to school get his GCSE results. He got into the college of his choice. We're proud and I suppose there's a time when I thought that may not happen. 

You see, he's got a lot going on with his brother. OK, what he's really got is a lock on his door, which worked well during GCSE revision. Stan can be inquisitive and can bother his brother quite a lot. Then there's a fight. Then chaos. But Down's Bro also taught Stan that when he's working, he's to be left alone. 

Down's Bro could have easily fallen back on the excuse that Stan is a disruption generally and then not worked for the exams. But he did work effectively and then did better than we could have imagined. 

So, today we're all proud of Down's Bro because sometimes Stan has to be the bit part, not the staring role, in this blog. Although, my aspirations about sixth form college aren't over because, with support, Stan can achieve a place too in the next few years. And I'll probably blog about that.   

Ringing my Mum and sis more than made up for my disappointment 35 years ago. As for Stan and his bro, there's now no excuse not to have a big friendly fight............

Wednesday, 6 August 2014

Gammy: A healthy discussion


So, why was Gammy's sister described univerally as 'the healthy twin'? According to the Straits Times of Singapore, Gammy has 'no life-threatening heart disease'. Many children with Down's are born with a hole in the heart. Stan went one better with added Atrioventricular Septal Defect (Don't ask). So you could say, when he was born he was 'unhealthy'. But Gammy? He has Down's Syndrome but that doesn't define his health status. OK; many kids with Down's have associated medical issues, but Down's in itself isn't a disease. 

This reporting has really got the hairs on the back of my neck standing to attention, because the use of the word 'healthy', even if it is journalese and works its way nicely into headlines, further stigmatises this little lad. Come on world; I thought you were supposed to be on his side?

Rant over. I really shouldn't get so upset. It's not healthy. 

Sunday, 3 August 2014

Abandongate: How Gammy helped out at the pool this morning


Suddenly; a news story that isn't in the Middle East, the Ukraine or West Africa. This should be the silly season for the media, but big international events are keeping their focus on geopolitical issues. Then #abandongate lands on the editors' desks and it's time for an international story that's slightly different and which people can do something about. In this case, send cash. And awareness has been raised about Down's. 

So, was it me or did Stan and I have more respectful looks this morning at the swimming pool? Surely one result of the #abandongate / Baby Gammy situation is that people who are shocked at the thought of a baby being abandoned - just because of his Down's and related medical conditions - would also be less shocked and more accepting of me and Stan doing our thing in the pool, than they sometimes are. 

If you're a Down's parent and you've missed this news story you've been on another planet. But that's OK, as Down's parents we're often off the planet anyway. Oh, the challenges... But is that enough for this couple to only take home the 'child that works' - ie Gammy's Sis - and leave Gammy with his surrogate Mum? Don't get me wrong; sometimes I feel like dropping Stan off in Thailand, but only for a bit of Down's Dad down time, not for a lifetime. 

It's great that the Down's Syndrome Association have just put out a statement saying that they hope Gammy will be reunited with his sister one day. The Mum in Thailand needs lots of support and it's good that hard cash has already been promised. 

And, in the pool next Sunday, we'll we're just be doing our thing. Just like Gammy will be soon, we hope.