Today is a milestone for people with invisible illnesses and conditions. Today people with invisible disabilities are finally entitled to apply for a blue badge which entitle them to use the disability parking bays.
Until today you could only apply for one if you have a serious physical disability that impedes your ability to physically walk. But now from today, you can apply for one if you have autism, or another disability that is hidden.
For families like mine this is going to dramatically improve the quality of our lives.
That may seem like an extreme statement but please let me explain.
Days out with any children can be trying. But if like me you have two children with autism; every day events and days out can be dangerous.
My two boys react to noise. They have a heightened sense of hearing, no sense of danger, and an inability to predict circumstances.
We simply cannot travel on public transport.
There have been so many times that my eldest boy has nearly been run over, fell down the gap between a train and the platform, and had panic attacks in crowds.
When he was younger I used to commute into London to work. I’d have to drop him off to his childcare facility on the way. At this point I was unaware that he was autistic.
A common daily situation for us would be where we would get onto a train and then he would panic. He would run as soon as we got on the train and need to find a seat quickly. He had to sit down before the train doors made a beeping sound to indicate they were closing. For him that sound was frightening and deafening. So for him, if he was seated he felt more able to control his anxiety about it. He would still scream but he felt contained. It wasn’t always possible to get a seat and often the trains would be crowded, so his fight or flight response would kick in and he would either start lashing out at people or objects around him to get to the seat or run into danger to get off the train.
A common occurrence would be where in his moment of panic he was unable to see the large gap between the train and the platform, he wasn’t aware that he could fall down that gap, or get stuck on the platform alone.
Many times, kind strangers have saved him by grabbing hold of him and prevented him from falling down the gap.
Another time he ran out of the station and directly into the path of oncoming traffic. Another occasion he sat on the floor in the train station frozen to the spot, and I had to get a police officer who happened to be standing by, to help me carry him onto the train as he was too scared to board. We had to cover his ears and eyes and seat him.
The list of incidences likes this is endless and it would take a good few long blogs to list all the near misses we have had.
In the end I had to stop using public transport altogether. It was too dangerous and stressful. The panic attacks became more frequent and as my son grew in size, the general public were less accommodating .
A large 15 year old who is 5ft 10 tall is rather hard to ‘grab’ and he is difficult to manoeuvre. A child of this size who physically looks just like his neurotypical counterparts and starts behaving erratically is at best going to raise a few eyebrows and at worst is going to invite some very unwanted attention. Not to mention that it is embarrassing for him once his panic attack is over and he sees everyone staring, tutting or worse.
In the end he started to refuse to leave the house and had panic attacks every time he went outside. We were house bound for a long period of time and slowly developed a significantly lower quality of social life than other families with children of his age.
So with therapy and driving lessons I slowly started to claw my life back and I started to drive everywhere .
This made it slightly easier to attend days out. But only slightly.
Nowadays we park up as close as we can, and walk to the event or venue we want to attend. This still involves walking long distances, and heavy planning to keep him and his brother safe from the road.
The noises, lights from vehicles, hustle and bustle from surroundings and crowds can be painfully scary and triggering for my autistic children.
My youngest son is more severely autistic and is still in a buggy despite being 6 as he has global development delay and has the mind of a 2-3 year old. To complicate matters more I should note that I have an invisible condition called Ehlers Danlos Syndrome, which means (amongst many complicated problems) I can’t walk very far even on a good day.
Just yesterday we wanted to enjoy the summer holidays by going out into London for the day. I had to pay heavy parking fees to try and park closely to the place we visited. We parked as closely to the venue as we could, but it was still very dangerous.
And just last week I had to forego a festival due to a lack of parking. There was no parking near the festival except for disabled parking (which I wasn’t entitled to use last week) so I had to miss the event.
If I had a blue badge it would have meant that we could have parked closely and got the event safely. Instead I had to miss it and let down friends and family once again.
There are so many examples like the ones I’ve listed where as a family we have missed out on events due to not being able to drive or park there.
Over time it can really impact on levels of happiness, friendships ( people give up inviting you out if you have to cancel quite a bit), self esteem and ability to socialise: all of these things are so crucial to people in general to contribute to a healthy and happy life. For people with invisible illnesses and disabilities who already suffer from the various conditions and the limitations they bring, it is even more important that they can access events, and normal day to day things like shopping. It’s crucial that I am able to take my sons shopping to help teach them life skills, but more often than not it’s just not safe, or too stressful to do so.
But today, as I fill out my form for a blue badge and am able to tick the criteria that actually applies to us, I feel like a weight has been lifted. The possibilities for us to access the world have now increased infinitely and I am so happy I could cry.
I will be able to take my boys out on my own, without having to have another adult present, or having to worry about them walking into a moving vehicle just going to the shops. I won’t have to spend hours trying to find eligible parking and pay hefty fees or try and navigate a route that minimises the possibilities of meltdowns, or real danger to my kids.
Today I feel like our family’s disabilities are being recognised as real, and that it’s the first step to a wider acceptance of invisible illnesses as a whole.
The world is our oyster and I look forward to so many more adventures!