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

Saturday, 7 June 2014

Really freaking out


Woman on a packed train home. Three-year-old daughter. Screaming. I mean, really really screaming. In the rush hour. My first reaction was one of pure relaxation. How selfish of me to find someone else's misery something calming. I've been here, on public transport, when Stan's either wanted to have someone's seat, cuddle them to death or scream the carriage down. 

And now...it was someone else's turn. Perhaps she should have got off because everything she tried didn't work. On the other hand, she probably just wanted to plough on through to her stop. Her daughter said that she didn't want to sit on her knee. Overhearing this, a kind passenger (not me; I was standing) offered her seat, but the Mum knew that the girl was flailing around looking for anything to say. She turned down the request and the crying continued. 

Then the high-pitched screaming really started. I hurt my left ear in 2005 at a Chemical Brothers gig. I carry special music ear-plugs for just this situation because loud or high-pitched sounds hurt my ear. But I couldn't put them in; I had to let my ear get hurt a bit. How could I, possibly the only person on the train who understood what was going on in this poor woman's head, suddenly fish out two specialised protection ear plugs to drown out her daughter's cries? 

You could just feel that the carriage was desperate for it all to be over. When Mum and daughter got out, lots of people were staring and I got mighty close to asking them to "go about their business" without adding to this woman's woes. 

I wanted to tell the woman that I know her pain, and that I understand that her daughter's not really like that. But her body language was telling the rest of the carriage to back off. No surprise there. 

Life can be stressful for a parent with or without a learning disabilities to deal with. I wanted to point out that the girl will calm down, and they'll laugh about it one day. But I don't think she was in the mood to listen to that...........But I had as sense of 100% empathy. 

Sunday, 1 June 2014

Waiting for the World Cup


"All little sisters like to try on big sisters' clothes" opined Elvis Costello on his much-unappreciated Imperial Bedroom album. Well, sometimes it's brothers who do the same and I have to live with the fact that Stanley (named after the family team's greatest son, Sir Stanley Matthews) is wearing his brother's old shirt, making our family look decidedly biased towards a certain North London local side. 

He likes the shirt. So, what's a Stoke fan supposed to do? Down's bro decided long ago never to walk in anyone's shadow, especially his entire family's football team. And I'm proud that he's stuck to his guns (geddit) under tremendous pressure. It could have been a lot worse; if it had been Man United he'd be living in the shed. 

The same goes for Stan though. Imagine; putting a little disabled boy in the shed. Luckily, I didn't have to. 

I've spoken before about how football has bound us as a family. I recently was lucky enough to take Down's bro to the cup final. It was fantastic to give him the chance to see his team win. And I've spoken about how that goal by James O'Connor played its part in saving Stan's life. And how Stoke's losing appearance at the Cup Final in 2011 was a good day for our family. 

I usually hope to blog with a decisive message; something we can all learn from. This entry, however, is really just an excuse to say that we're very excited about the World Cup. That includes Stan, when we persuade him; I wonder if he'll fit in that old England shirt?.....