Let’s Hear it for the Bright Side
So it occurs to me that recently I have been focusing on serious stuff, and often somewhat negative themes. I decided that the time was ripe to show you a little about the bright side of having a child with a disability.
- It is the perfect excuse. For everything.
Have you ever signed up for something and then when it has come to it, wondered why on earth you thought it was a good idea? Having a child with a disability is the answer to all of these situations. Who is going to argue when you tell them that your severely disabled child has a hospital appointment which inconveniently clashes with your previous commitment? Or that they are extremely poorly and you have no choice but to stay home and look after them?
The beauty of this is that the excuses can apply to anything. Anything at all. Take, for example, one of Sasha’s visits to the hospital eye centre, a gruelling annual trip to a clinic which was clearly designed only to treat people over the age of 90 with cataracts. There are no toys. There is, ironically, nothing interesting to look at. It is miles away from the hospital shop with its distracting array of sweets and sugary drinks. For reasons unbeknown, the waiting time at this clinic is phenomenal. Our worst visit lasted four hours and culminated in us seeing a consultant who asked what Sasha was having for tea when we got home then almost shrivelled up in shame when I pointed out that Sasha has a feeding tube — a fact which he would have gleaned from Sasha’s medical records, had he read them. But not so the last visit. Oh no. It was shaping up to be another mammoth wait when Sasha obligingly had a seizure — a very routine episode for him but fairly dramatic to watch if you do not have much experience of epilepsy. I immediately located the nurse. ‘Excuse me. I wonder if you could check where my son is on the list? As he has just had a rather nasty seizure and he will crash shortly, so I want him to be seen before that happens.’ We were seen next. He was back at school before lunch.
It even counts as an excuse in situations where it really has no relevance. For example, my mum recently booked some theatre tickets for herself and her sisters. She asked if she could borrow my theatre card as it removes the booking fees and sometimes gets me reduced rate tickets. When she called to book, the lady at the ticket office advised her that only the card holder could use the card, arguably a fair and reasonable point. My mum (who was clearly determined not to pay that extra £2.50) indignantly told her that the card belonged to her daughter, whose son was severely disabled and could therefore not possibly be expected to ring up and book tickets herself. At which point the ticket agent, who by rights should have pointed out that having a child with a disability had no bearing on calling to book theatre tickets, apologised profusely and processed my mum’s order.

2. You never have to queue
Recently, many theme parks have changed their disabled ride access policies because some particularly enterprising disabled people were hiring themselves out to visitors so that the group could take advantage of the disabled queue times. I don’t think I have ever seen my sister as impressed as when she found out about this. She went on for ages about how entrepreneurial it was (she is a great fan of ‘The Apprentice’). Even with the stricter rules now surrounding it, this is a pretty epic benefit. Sasha is a great lover of theme parks and a particular fan of Disney so we are regular visitors and I’ve got to be honest — if I ever had to go to a theme park again without a ride access pass, I’m not sure I would be able to cope. Not to mention that plenty of shops now have disabled queue lines, as does passport control in most countries that we have visited. There is of course a reason for this — no one would want to see (or hear) what happened if Sasha had to queue for three hours to meet the current favourite Disney Princess but it’s a win for those of us who get to go along for the ride (no pun intended).

3. The parking
What can I say? There is nothing more satisfying than parking on a double yellow line and knowing there’s nothing the traffic warden can do about it. Or swinging into a disabled parking space, about twice the width of a regular bay, while watching everyone else doing a fantastic impression of Austin Powers trying to parallel park in a space which has clearly been designed for a Hot Wheels car. I will say though that I am absolutely not guilty of abusing this privilege — when I do not have Sasha with me I Austin Powers it up like everyone else. Which brings me to the second great aspect of disabled parking: shaming those people who have ignorantly parked in blue badge spaces for reasons other than that they have a disability (too lazy to walk, think they’re better than everyone else etc). This happens alarmingly often but I have so far resisted the urge to key anyone’s car, opting instead for my own versions of parking tickets. Adorned with blue and white stripes and looking impressively official, they ask the recipient to tick the box corresponding to their own selfish motivation for abusing the space (see example options above).
4. Many people think you are amazing, just for living your life
This one I still can’t get used to, even a decade after becoming a special needs mummy. I have lost count of the number of people who have said they ‘don’t know how we do it’ or think ‘we are an inspiration’. I remain bemused (and unsure how to respond) because the secret is: we’re not amazing! We are just getting through the day like everyone else. Granted our days involve a few more hospital visits, a whole lot more Mr Tumble, and almost certainly a great deal more tube feeding than most people’s, but to us they are just regular days. So now you know the truth (may have just done myself out of some adulation there).
5. You get to laugh at inappropriate jokes
This is a very important factor for my family. We use humour as a coping strategy, and just because life is too short to be miserable all the time. I must confess that my sister and I laughed hysterically throughout most of our nan’s funeral (luckily people thought we were overcome with grief. Little did they know). Since Sasha was born we have tried valiantly to see the funny side of the situations that we have ended up in. I have rarely laughed as much (apart from the unfortunate funeral incident of course) as I did when watching Teachers and hearing the quote: “A spastic is someone with cerebral palsy, not someone who misses an open goal on the football field, Mr Steadman.”
6. Everyone remembers you
We feel a particular sense of loss at Thomas Cook’s recent collapse as their agency in Bromley was our go-to place for package holiday booking. Having travelled to Turkey with them when Sasha was three, we proceeded to book all inclusive holidays with them on two further occasions. Whenever we walked into the store Sasha would be greeted by name and we would be immediately assisted. To make this perk even better, it links with the previous point as nobody knows whether it is appropriate to admit that they remember you because your son is in a wheelchair. It is always amusing to watch someone trying to find ways to describe Sasha which do not include the words ‘is very disabled’. They often resort to the very British habit of starting sentences but then just not filling in the potentially offensive part; for example: “Oh yes, your son is…”. For the purpose of clarification, I would never be offended (or in fact surprised) that the thing someone remembered was that Sasha was in a wheelchair. It’s a pretty big distinguishing feature.

7. You make friends wherever you go
At least, we do. I often read posts by parents of children with disabilities who say that people avoid talking to them. I can honestly say that we have never found that. Or perhaps they try to avoid talking to us but we talk to them anyway? Whatever. On days out and particularly on holiday, we seem to make a disproportionate amount of friends and acquaintances. This is particularly fortuitous on pool based holidays as we usually end up friends with a number of obliging children who will pull Sasha around in his inflatable boat for hours on end (his own sisters of course would leave him moored at the side).

And so there you have it. It’s not all bad. Some days the bright side is in full view; other days it might take some finding. But it’s always there.
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