Autism the, “Fashionable”, Disability?

The choiceless indoctrination of “special needs” and acceptance of the new journey has been and still is an only going process.

Throughout you meet a number of families facing similar battles to you.

Battles for services, mountains of paper work, tireless days and nights filled with fear filled appointments and therapies, lack of sleep – the list goes on…

You don’t necessarily meet people who have the same condition as your child- however they may share some of the same struggles.

I have met a great many families who have a child with Autism.

In fact in my daughter’s school I would estimate 95% of the population have Autism.

So you can probably understand why I sometimes feel out numbered.

For a marginalised part of society I can sometimes feel even more different for not having a child with Autism.

Autism is very topical this year with documentaries such as ‘Richard and Jaco: Life with Autism’ highlighting it,  drama series like ‘The A word’ created around it and characters appearing in soaps like Holby City with it.

Online in the world of blogging there are huge numbers of blogs highlighting the varying highs and lows of living with or raising a child with it.

I started to feel a bit jealous.

Isn’t that ridiculous?

I wished that the spotlight was on Chromosome 18q-, my daughter’s condition. I selfishly wished people had heard of it.

That shows were being created around it so family/friends/strangers would become a bit more aware and more accepting.

I started to wish we had an awareness month, where people would change their filters on Facebook in support.

I wished the BBC would contact me and ask me what it was like raising a child with a rare condition- let me speak about the lack of information and awareness you get from doctors about it.

I wished there was chromosome 18q- intervention service and local support groups.

I wish I could meet others who were grown up and living successfully with their condition.

I wish I had friends walking a path very similar to mine who could share their own journeys and bridge the gap between feeling like I’m on an abnormal journey.

Autism almost seemed like the more known, accepted or, ‘fashionable’, thing.

However although my green eyed monster had reared its head I pondered the battles the children with Autism have to face as well as their families.

The discrimination, the judgmental stares, lack of understanding, aloof family and friends and it became much clearer to me.

We might not have the same label but we had very similar experiences.

A win for them was a win for us.

People understanding why my daughter might suddenly cry or become agitated may now be looked at with a little more empathy knowing that some children have melt downs.

People understanding that a disability can be hidden and is not just people in a wheelchair may stop the stares I get when I drive into a disabled space.

Not all disabilities are immediately obvious.

If the blogs, the documentaries, the shows all continues to educate and inform others it will make life better for many who have Autism and other disabilities.

If people start to understand that there is nothing “wrong” with them and that they are in fact blessings who learn things differently and actually teach us to be different better parents.

Then I am okay with Autism being the ‘fashionable’ Disability and taking the much needed lead in raising the necessary awareness around difference and disabilities.

Special Needs Parents: Why Won’t He Say Sorry?

This was my daughter in the middle of a hospital in the waiting room.

What had happened… well, let me take you a few steps back…

My daughter has multiple needs, she has a hearing impairment, eye impairment, global developmental delay, as well as low tone.

With this complicated myriad of differences, she can sometimes exhibit different behaviours.

Whether that be sensory seeking or behavioural challenges.

I recently wrote a post about how to, ‘Stop challenging behaviour’, and ironically was faced with an incident of challenging behaviour – but not with my own child.

Waiting patiently in a crowded Ophthalmology clinic my daughter and I waited to be seen at her double eye appointment.

The waiting room, overcrowded and not at all entertaining for adults kept us cornered off until we were next to be seen.

My daughter, seeing the other children also waiting, tried to interact and play with them but was ignored and so she ambled around, picking up books, tossing them aside and generally trying to find anything to amuse herself.

Overhearing the familiar intro song to Something Special, G instinctively got excited at watching Mr Tumble.

However, he wasn’t on the TV in the waiting room (Which was overhead and too far for her to be able to focus on to see).

It was playing on a young boy’s mobile phone.

He was sitting about a meter away from me.

In a distracted almost mesmerised way she headed towards where the young boy was.

She tentatively stood about half a meter away from him, trying to peer over his shoulder, realising she still couldn’t see.

She shuffled a little closer to him when all of a sudden he lashed out and hit her in the face.

It happened so quick, that my shock stopped me reacting as quickly as my brain was screaming at me too.

I dropped my bags ran over to her and scooped her up.

She looked at me in shock her glasses half way down her face and she grabbed her face instinctively to comfort herself.

The whole room seemed to stop and be looking at what was unfolding.

Was it me or was it incredibly hot in here?

Grabbing her I bundled her back to my chair, by now the shock had set in and she started to sob.

She clung to me frightened and not understanding what had just happened.

I didn’t understand what had just happened.

Anger started to grow inside me.

A man, his father I presume, was sitting next to the boy and said to me across the room, “Sorry, he has Autism”.

I froze. I instantly understood and felt somewhat differently… But also confused.

For I understand the complexities of having a child with different behaviour and know it is not his, ‘fault’.

But this did not stop the fact he had just attacked my child.

My petite 5 year old, innocent little girl who didn’t do anything.

The little boy was at least 10 years old and heavily built.

I felt numb. I felt totally and utterly blindsided as my reaction had been impeded.

My motherly instinct to protect was in full force but my wider understanding and openness to differences changed my ability to react. I sat there quietly holding on to G.

G clutched at me with tears rolling down her face.

A few minutes passed and I tried to encourage G to get down and maybe go and play but she was too frightened to leave my lap.

She turned around and pointed at the boy.

Then she said in her broken language, “Why not say sorry?”

I was flabbergasted.

Because yes, in these scenarios you would hope the child would be scolded and come and say sorry.

But this was not happening.

G is learning about saying sorry and so for her she was not understanding why it wasn’t happening.

I said to her, “Its okay, he is sorry, he just doesn’t know how to say it.”

My heart ached for her, struggling to try and comprehend what was going on.

I sat there agitated for what had unfolded around me.

Later that day, having explained to her father what had happened.

He became angry at what had happened.

I started to defend the little boy instinctively.

But he raised a valid point and one that was the key to my unease in the situation.

“Why didn’t the father get up and come and see how G was and say sorry for the little boy to see?”

He was right. The little boy may have challenging behaviour but it would have been positive for him to see his father go and see how G was.

Seeing and hearing his dad do that would have modelled it for him so he might do it in the future.

At the very least would have helped my daughter come away from that situation feeling a bit more comforted, because now she will always have that unease and confusion as to why the young boy hit her.

Dread of the Summer Holidays

Us parents…or me…Well I am ready to jump on top of your car and demand that you let me live with you for the next 6 weeks because my daughter struggles without routine!

Actually — I struggle without routine!

Holidays bring with them the wonderful opportunity to spend more time together, but it also brings with it the unscrupulous pressure to keep your kid entertained – constantly.

G, my daughter is at that age where she wants to go out and play at the park or have play dates, or just spend the day playing (with me) ALL DAY.

However G struggles, she struggles to speak, struggles to walk short distances, needs help to get on and off all the equipment at the park.

She has an eye impairment that impacts her perception of depth and speed so she can’t spot simple dangers (like uneven flooring).

She has low tone so she gets floppy when she walks, so a trip to the park means I need to bring along our buggy wheelchair.

As I mentioned she doesn’t speak clearly so she isn’t understood by most children, so she spends the majority of her time in the park trying to engage with other children with varying degrees of success.

She tries her best to ‘run’ after them but she has coordination issues and so despite her best efforts she is often just ‘too slow’.

I spend the entire time trying to keep her out of harm’s way, from being knocked over by speeding children or flying swings.

Or keep her on more manageable activities where there is less of a risk she will fall off.

I play interpreter with children so they will engage with her and just hope their parents don’t think I am a weird stranger!

She is also starting to recognise cold and dismissive reactions from children and so I am desperately trying to shield her away from this as I want her to remain friendly, social and excited.

Social outings are getting even more challenging to navigate.

It is exhausting.

Taking her on day trips in the holidays are equally challenging – Where can we go? Will they have adequate changing facilities?

As she is too big for baby change now and I refuse to change her on the floor.

What can she eat – she has a list of intolerances which leaves our choices very limited.

But what if it is busy…will she get overwhelmed? Will the buggy get in the way? How much is it? Can I get on the train…is there wheelchair access? The list goes on…

It is stressful thinking about it!

Each holiday I feel battered and beaten by the end of it.

The daily demands of constant stimulation and attention, navigating her emotional temperament and trying to keep on top of her therapies is a massive challenge.

Just thinking about the holidays makes me want a holiday!

A holiday. By myself. On a beach. With a glass of something tingly.

I digress… the holidays bring a myriad of challenges from social outings to logistical dilemmas.

All I can do is send this SOS out to other parents and say you are not alone!

WE WILL MAKE IT – she says with her warrior style scream, as she clutches her weapon of choice (wipes) and imagines herself charging up a metaphorical hill!

A Letter to all the Lonely Carers

Being a carer is an all-encompassing role.

It takes it out of you mentally, physically and emotionally.

Add to the mix being the full-time carer to your own child and you are laden with the unique guilt only parents can have, that your child has to experience a harsh reality – all because you brought them into existence.

This brings an insurmountable pressure that you put upon yourself to give them anything and everything they need for a better existence.

Being a full-time carer can be a sobering and saddening reality because this job is essentially forever….

Let me clear this up, it is not a sadness in being a parent forever. It is sadness that this unrelenting, taxing, unpaid and monstrously demanding job does not ever stop.

Day after day you will enter a daily battle of doing hundreds of micro-tasks for your child often with little sleep, little support, no pay, no holidays, and no real rest.

It can create a cycle of never-ending activities that render you chained to a groundhog existence. Often pushing you further and further away from normality.

Creating an ever growing distance from people around you. Not intentionally do you push people away but life pushes you away…it can be lonely….

Very lonely…

Or is that just me?

Sometimes I just need to do nothing. To have nothing around me – no noise, no tasks to do, no people to need to ring. Nothing.


Guilt free alone time.

Just so I can catch my breath, catch my own thoughts. Find my own wants…

Guilt free is the key because as a carer it can become habitual to keep “doing”. Never stopping these tasks for fear that if I do I would be viewed as lazy.

Because being a carer isn’t highly respected in our society. People do not give the role the right level of respect and regard I believe it deserves.

How many times do I have to tick the box “unemployed” – when in fact I work day and night? Society can make you feel like you are not doing very much at all. A burden in essence…you and your child.

This in itself is ostracising and feeds into the feelings of loneliness.

But on this Carers Awareness week 2017, I wanted to say to all those carers…I see you.

I see you in the shadows.

I see the tireless work you do, day and night for your children, your mothers, fathers, aunties and uncles.

I see the sacrifice you make, giving up your careers, sacrificing your own health and well-being for someone you love.

I see the unwavering support. I see your anguish in the dark times and I see the tears you hold back when it feels all too much.

I see the never ending fights you take on for your loved ones, the plethora of paper work you need to wade through.

I see the never ending appointments and organising it takes to keep them well looked after. I see the extra costs you have to pay to be able to do and have what is easily accessible to others.

I see you.

I see your pain and unfathomable happiness. Your selflessness and self-LESS-ness.

I see your worries about the future, I see your need for freedom. Need for time. Need for space. Need for an existence where YOU are at the centre of your needs. I see you.

I see your confusion and guilt in loving them wholeheartedly but wanting to run away all at the same time.

I see you.

I see you.