Invisible Conditions and Hidden Disabilities

I can no longer remember how many times I’ve heard the words “She doesn’t look disabled”.

Don’t even get me started on “She doesn’t look autistic”, what exactly do they think an autistic person looks like.

I’ve sometimes thrown that question back at people and they stand there, stunned and can’t answer.

As far as the disabled comment goes, it really bothers me.

My daughter walks. She doesn’t need a wheelchair, so people automatically assume she’s not really entitled to her blue badge and they stare and whisper or make ignorant and judgemental comments.

No, she’s not in a wheelchair, sorry about that. But she has some mobility issues, a lot of safety issues and she’s a child that has a condition that affects her emotions, thought and the space around her.

She’s autistic with moderate learning difficulties and these difficulties can impact her life greatly.

She’s easily lost without guidance and when sensory overload kicks in or anxiety, the ‘fight or flight’ often ends in flight regardless of surroundings, traffic, roads.

When her anxiety is in full swing, she often becomes limited with speech too and resists support and help.

So yeah, for those reasons and a few more, she has a blue badge. But for many members of the public, they visually expect to see a physical disability.

A total lack of awareness and understanding for autism and for all invisible conditions.

I’m quite a tolerant person but there are days I want to laminate copies of her DLA entitlement, risk assessments and her Occupational Therapy report and stick them in our car windows so before we get the “Well, she doesn’t look disabled” and “Well, there is clearly nothing wrong with her” comments, the public can read and educate themselves!

A lot of people don’t realise that you can apply for a blue badge for hidden disabilities and conditions, it’s a fairly new thing.

In some ways I understand why people react as they do when they see my daughter walking and looking very able.

It doesn’t mean their behavior and comments are acceptable mind, just that I can see why they think the way they do.

It’s frustrating that society can be so judgemental before knowing the facts.

The final thing I’ll add here is that to get a blue badge you have to provide a lot of reports, evidence, reasons.

You have to jump through hoops and go through a system that doesn’t always play fair and you have to prove how that invisible condition impacts daily life.

To the members of the public with their whispers, looks and judgey pants on – I promise you they don’t hand out blue badges or DLA easily.

We have to fight for everything! So please, try and learn more about invisible conditions and disabilities rather than looking at us as if we’re playing the system or faking it!

(This blog was originally one I’d written for https://www.fireflyfriends.com/ )

Toilet Troubles and Continence Concerns

My daughter, Eliza, is autistic, diagnosed at age 3.

She’s struggled with various things during her life so far, one of the main ones being continence.

She was in pull ups until she was 7 because she just didn’t recognise the need or urge to go and use a toilet.

There were also added issues with her not liking small spaces (and let’s face it, toilet areas can be small, especially public ones) as well as fearing sitting on what she visually saw as ‘a hole’.

It just didn’t make sense to her and it caused anxiety.

We read books together, created social stories and she had apps on her iPad about toileting, but it still took a lot of patience, support and understanding and not pushing her too hard, allowing her to process things and go at her own pace.

So how did we do it? Other than the books and apps we had, I also used her favourite dolls and teddies and sat them on the toilet and potty to show her how it all worked.

I had a syringe full of water hidden up my sleeve which I squirted in to the loo so it looked like the doll had done a wee! She thought it was hilarious and it took away some of the anxiety as she could see that nothing scary happened, it was just a wee.

Eliza was getting closer to being confident to use the toilet and her understanding about it all was great, but I chose the time wisely to give her that last gentle nudge.

Christmas! She loves Christmas.

After speaking to our local children’s continence team and telling them my idea, I just went with it and hoped I knew my child as well as I thought I did.

I wrote Eliza a letter from Santa who told her that his wife, Mrs Claus, would be sending Eliza a special package this year.

She was so excited. I purchased a variety of underwear choices in her size, a pink padded toilet seat and put them in a box, added a letter from Mrs Claus that praised Eliza for learning about using the toilet and how Eliza was growing up so fast and that she’d sent Eliza this special delivery to help her with the final step.

Eliza thought this was wonderful and she tried her underwear straight away and has been dry ever since!

A lot of parents seem to panic when their child doesn’t use the toilet by age 3!

Why? Let them develop at their own pace and find their confidence to do these things.

The more pressure you add, the harder it will be.

Remember that some children might have hidden fears of small spaces and other things – lighting, ventilation noises, hand dryers.

And for autistic children, go at their pace and offer as much support and patience as possible.

Allow processing time. Allow mishaps and accidents and don’t get upset by them but give them encouragement and support.

Let them ask questions, watch apps, social stories – whatever works. Not all children will become continent, I’m aware of a lot of friend’s children that are still wearing adult nappies as teenagers and adults.

One of the saddest parts of this is the ignorance, mocking and stares from other people who don’t understand why someone isn’t ‘toilet trained’.

Because they don’t see hidden conditions or invisible disabilities, they simply judge.

Another issue I’ll highlight here comes from a friends Facebook status that I saw today.

Her adult son is autistic and needs care/supervision 24/7. They were out for lunch and she needed the toilet herself.

The disabled toilet was out of action (which she normally uses so she has him with her at all times) so she had no choice but to take him in to the ladies’ toilets with her as he can’t be left alone.

And yes it may not be ideal and you may think it’s inappropriate, but sometimes there really is no choice and we have to keep our children safe, even when we need a wee!!

(This blog was created for https://www.fireflyfriends.com/ originally)

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Self Care….. What’s That?

It took me a while to start writing this blog, I had to really stop and think what I do regarding self-care!

When you have a busy life with work, children, studying, there is little time to do something that is fun and just for you.

It doesn’t have to be something big like going to a spa for the day (Oh a whole day in a spa, that sounds amazing), it could be something like reading a book.

Alone. In peace and quiet. For ten minutes.

One of my biggest flaws as an adult is not looking after myself when it comes to self-care. I’m the first one up in the morning, I get the crazy school run sorted for two children and often haven’t even had breakfast or a drink by 10am.

When I do remember to make a coffee, I drink it cold an hour later after getting lost in laundry piles or hoovering. I used to think that when both children were in school, I’d have so much time on my hands.

How naive I was, I seem to have less time and I have no idea how that works!

As parents, we are so busy doing things for other people that we forget to do anything for ourselves.

And sometimes, by the time we have some free time, we’re exhausted, and we get stuck in the same of cycle of events. It’s important to take time for yourself and you can start off small. I have a 5 year old and a 10 year old.

One of them is autistic and has a very random sleep pattern. Often she is awake till quite late at night meaning I am never really alone at any time.

But as she is 10 and happy to watch a film or play a game, I will go and have a quick bath.

It’s rushed and not overly relaxing but it’s ten minutes where nobody needs me, nobody is talking to and at me and I can just enjoy the silence for the brief time I have.

I try and read in the evenings when I go to bed, if I am not too tired.

It may only be a page a night but it’s my time and my hobby.

When my children are at school I am usually cleaning, shopping or studying but I have recently made myself try new things so that I actually leave the house, see other human beings, have adult conversation and do something fun!

It’s not easy finding things that fit in school hours, as a parent and carer I am often house bound in the evenings, so I feel very lucky with the things I now do.

I start my week with attending a carers music club. We sing, play instruments and have a laugh.

I get to meet other carers and not feel so isolated. And it’s in school hours, bonus.

I end my week doing a local yoga class. It’s helped my anxiety and stress levels so much and I feel so refreshed after each session (and then a little stiff the day after because, well, I’m lacking in fitness and getting older!).

And again it’s in school hours, another bonus.

In between these two events I am so busy with life but having these things to do that are mine, that get me out of the house away from my assignments (mainly away from the ever growing laundry pile) is great.

They help me get through the hectic times and give me things to look forward to as well as pushing my boundaries, giving me confidence and reminding me that I can do self-care and for me, yoga and carers club are the forms my self-care take right now.

(This blog was originally written for https://www.fireflyfriends.com/ )

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