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Apathy, Aggression, Injustice - Welcome to the world of Special Needs Parenting

Apathy, Aggression, Injustice - Welcome to the world of Special Needs Parenting

I am not a confrontational person. If anything I am learning to pick my battles.

I've been told in a therapy session "Ceri-Ann, you simply don't have the energy for that" and am constantly told to be careful what I let get to me and drain me of my energy.

You need a lot of energy as a parent. You need even more as a special needs parent.

Today I am aching to my core. Amy has a cold. It's never "just" a cold though is it with some little ones.

It's suction, nebulisers, temps, laboured breathing, constant clothes and bedding changes and sometimes even ambulances and hospitals. Just day to day energy to do all of her transfers, dressing, washing, medications and whatever physio and interventions she needs is enough to exhaust me.

Getting her in and out of the car several times a day is becoming a bit of a back breaker. But when she's ill I feel it most.

So as you can probably see, I do what a can to conserve energy. (Also I drink a lot of coffee)

However. I cannot stand by and watch an injustice and not say something.

I was recently taking Amy to respite only to find a work van was parked in the drop off bay. It's a drop off bay for families with children with severe/complex medical needs. There's only the one and getting through the door can be a challenge if the car park is full.

I sighed and thought "well, he shouldn't be parked there". I blocked him in.

I'd only be a few minutes. We have a blue badge. I don't know why I even had to justify it to myself.

When we came back out the man was stood glaring through the door at us.

"Ignore him", I thought. He has no idea what we go through day to day.

I even warned Phil (Amy's dad) to not shout at the man for parking in the bay. He didn't. I didn't want the embarassment. I was just going to quietly get in the car and drive off.

The man came raging over to us "YOU SHOULD NOT HAVE BLOCKED ME IN" he shouted.

I couldn't quite believe the audacity of it. Whether he had been given permission or not to park there didn't matter, why was he now towering over us and shouting!?!

I tried to explain that it had been difficult for us to enter the building because of his van.

I also tried to explain Amy's level of mobility and medical needs. But he wouldn't listen. He was obviously a very hot headed and angry individual. We tried to argue back. I was furious.

Who on earth did he think he was?! Why couldn't he just shut up and be grateful we weren't going to say anything in the first place? By this point he was properly shouting at us and getting more and more aggressive. He squared up to us. I started to feel a bit scared.

At this point I realised that this man was a waste of our energy. He was never going to say "you know what you're right, I'm sorry." Never in a million years.

So I got in the van. Took a photo of him (he clearly saw and was even angrier) and moved so he could get his van out. I sat and emailed a big complaint to his company. I was shaking and holding back the tears.

Later that day I received a gushing apology from his manager and an assurance that the man in question had been dealt with.

I didn't wish to pursue it further, in fact I'd quite like to forget the whole thing ever happened. I don't want to need apologise, I just want everyone to be a decent human being and be kind.

But this isn't an isolated incident.

All day everywhere people abuse the system. Or through blissful ignorance, families like ours are left to struggle... often totally unnecessarily.

Finding the balance between "I can't change the world by myself" and becoming passive and apathetic, and then the next moment thinking "NO. I will NOT stand for this. If I say nothing, nothing will ever change."

Even just switching between these two modes all day is frustrating.

I went to the supermarket with Amy the other day. Sadly our Firefly trolley use days are over as Amy is a real kicker and I can't push her without getting very bruised legs!

So we opt for the disabled trollies that attach to the wheelchair. She loves it as she gets to be in charge of the trolley and even gets to throw things out of the trolley... it's all a fun game for her.

Previously I have sent many complaints to the store for not having the trollies in an accessible place; I'm happy to say that since this they have been good at keeping them in the same area.

However on this occasion there wasn't even one trolley.

Feeling instantly annoyed I walked to the customer service desk. I hid my anger and politely smiled and said "Hello, can I have a wheelchair trolley please?" To which the response was "oh sorry, we only have one now, the rest have been stolen again."

STOLEN. Unexpectedly I started to cry. The person offered to go and look for the other trolley but thought it was in use.

Had I stayed I know they would have offered to help me shop. But I don't want help shopping. I also don't want to order online.

We want to access the community, grab a trolley, and do our shopping just like everyone else gets to. I don't want us to get special treatment, we just want to do whatever everyone else gets to do, and sometimes that needs a little extra consideration (i.e A different trolley. a changing place. A ramp.)

"I'll go to another shop" I managed to choke out as I turned away and walked back to load Amy's chair into the van.

Suppressing the tears I couldn't help but see several parents and children walking in to the shop, running, skipping jumping; it seemed like some strange dream where the world was mocking us with how easy it can be for others.

I was tempted to drive home empty handed but we needed stuff. Amy's dad was home poorly and we needed supplies.

Aside from all of this - who even steals a wheelchair trolley?! I just know on my next riverside dog walk I will see one of the trollies submerged in a riverbank and it will re-awaken my anger.

The next shop was fantastic. There were quite literally about 40 wheelchair trolleys, all different sizes, AND the amazing Firefly trolley.

The shop was hard. Amy's posture has changed a lot. Her head constantly bobs forward and causes whiplash with how fast and hard it happens.

Her secretions were bad. Her seizures frequent. One moment she was laughing, the next she was screaming. I did the whole shop whilst singing to her and using one hand to help keep her from hurting her head.

It was exhausting. A lot of people stared. "Welcome to our reality" I wanted to say. I was feeling especially hard done to by this point and wanted to start charging people money to stare. I said nothing. I smiled politely.

Inside I felt like a ticking time bomb. "Conserve your energy." I kept telling myself.

When we finally left the shop I walked past all of the disabled bays to our van. It was raining hard by now. Amy loved it. She likes rain now.

I tried to focus on her smile and laughter and not on the three cars that clearly didn't have a blue badge parked in the disabled bays.

Part of the "I'm only going to be 5 minutes gang". I thought to myself "Take her spot, take her disability", and in my mind I left a snarky witty note on their windscreen, or a false parking ticket.

What a sadist. These people have no idea.

I have so many of these stories. I could probably tell at least five new ones a week.

I went in a huge new shop near us recently. Their disabled toilets were massive. (the room not the actual toilet!). I couldn't help but feel betrayed that they hadn't installed a hoist and level access changing table.

What a waste of space! I thought well maybe they just don't know about it. So I took to social media and explained our situation. What was my response? It was a polite, well worded no.

It was written so kindly but basically translated as "That's not going to happen. Dream on. "What do I do? I can't really boycott the shop.

They're not going to close down just because I'm not going back. Also they had built the toilets to regulations in the disability act.

So it would be a losing battle. I have to let that one go it would seem.

A local cafe advertised some amazing cakes. "Do you have wheelchair access?" I commented. The response? Another polite no. So I won't go there, even if Amy isn't with me. They probably aren't losing out.

They're serving many cakes to all of their most mobile customers. I walked past there and feel a bit of sadness in my heart that this is just another place we won't get to go.

Another fight I won't win.

I internalise a lot of rage. I try to let it out in healthy ways.

I try not to adopt unhealthy coping mechanisms. I try to focus on the positive.

But sometimes it all just seems so bleak, so dark, so unfair.

Maybe I won't change the whole world. But maybe, somewhere, someone, will read my blogs and change their ways and see the world through our eyes, even if just for a moment.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

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