Blogging About Disability Part One: The Power of Words

The internet offers an unparalleled opportunity to reach vast numbers of users – potentially many thousands of people each day, and this is, perhaps, the main reason for the surge in popularity of blogs and blogging among businesses and other organizations.

Any subject that you can think of will probably have been written about by somebody, somewhere, in a blog.

Why do people write blogs?

Is it to raise awareness of the things that concern them?

Is it to influence the opinions of others?

Do they do it as a form of catharsis to, ‘get things off their chest’?

These are, perhaps, the most common reasons for blogging, especially for bloggers like us – the parents and relatives of disabled children (or children with disabilities: you’ll see why I’ve added this in part two).

But can blogging ever be anything more than a self-indulgent exercise?

I would argue that yes, it can.

Popular bloggers can wield great power as influencers, and have a tangible impact on the realms of business, politics and society.

For example: a Russian political blogger was named by The Wall Street Journal as ‘the man Vladimir Putin fears most’ (March 2012), after his nickname for the ruling United Russia Party, ‘the Party of Crooks and Thieves’ was adopted by anti-regime protestors.

It was also the influence of bloggers in the US that created the political crisis in 2002 which forced Senate Majority Leader, Trent Lott, to step down.

Blogs are much harder for the state to control than either print, or broadcast, media, and so authoritarian and totalitarian regimes will often either seek to suppress them, or to punish those who maintain them: in Myanmar a blogger was sentenced to twenty years in prison for posting a cartoon criticising the Head of State.

But can we, as humble ‘Special Needs’ parents (I probably should stop using that phrase: more about that in part 2 also), really do anything to change the world?

Again, I would argue that yes, we can.

For a start, we can be instrumental in raising genuine awareness among the general population – not only of rare conditions, or of the fact that some children experience profound impairments or difficulties without ever getting a formal diagnosis (Syndromes Without A Name or SWAN), but also of the more common, and commonly misunderstood, conditions/impairments.

I write about parenting a child with Down’s Syndrome, and have on occasion been asked: ‘Why bother? Everybody’s already aware of Down’s Syndrome.’

But, though most people can recognise the facial features consistent with Down’s Syndrome, and think they know what it is, it transpires that their mind is full of outdated stereotypes and misconceptions, and they have no real understanding of it at all.

They are surprised when they are made aware of the true nature of the challenges we face, and of how much our children can achieve when given the right support.

As bloggers we have the power to challenge stereotype and misunderstanding, to demystify and demythologise life with a disability, by writing about, and sharing, our reality.

There is another way in which I believe we parent bloggers can influence the world around us, and that is by demonstrating a careful and constructive use of language.

But surely a blogger should write freely, as they speak, in a voice that is authentically their own, without having to worry about the niceties of grammar? Well, yes and no.

Of course any blogger’s writing should reflect their own authentically individual viewpoint and experience, and the finer points of grammar aren’t really that important so long as a person is able to get their point across, but language, as in choice of words, is crucially important when writing about disability.

The terminology concerning disability is a contentious and surprisingly political issue.

Disability is often more of a civil rights matter than a medical one.

It is an issue of semantics, also – language both reflects and influences how people think, and how they react to situations, and to other individuals.

The traditional view of disability locates the ‘problem’ with the individual, and asserts that it is the disabled person’s medical condition that is the root cause of their exclusion from society.

This is the ‘Medical Model’ of disability.

It confuses disability with illness, and looks for medical solutions – potential cures or treatments, or the eradication of the ‘problem’ by other means, such as pre-natal screening, and termination of foetuses found to have certain congenital conditions – rather than societal change to make life better for those with impairments/disabilities.

Much of the terminology it uses is patriarchal in nature, implying that disabled people need to be looked after, and to have things done for them and to them: and in so doing it denies them empowerment.

The persistent use of such terminology perpetuates negative and inaccurate stereotypes.

This in turn leads to misinformed and inappropriate attitudes in society generally, to social exclusion, a clichéd and negative media image, inadequate legislation and social policies, and inaccessible buildings.

In a society so heavily influenced by the media, the press can have an enormous impact on society’s knowledge and attitudes, and on public policies regarding individuals with impairments.

Yet, despite more than forty years of disability civil rights activism, and the opposing calls for the use of Person-First language or the Identity-First language preferred by the civil rights movement, many journalists writing in the mainstream press continue to use the dehumanising, disenfranchising and paternalistic terminology of the Medical Model.

In January 2016, Sarah Knapton, Science Editor at The Telegraph, described Down’s Syndrome as a ‘debilitating condition’ in an article on pre-natal screening.

She faced a barrage of comment and complaint from members of the Down’s Syndrome community, particularly those active online, keen to point out that, far from being debilitated, those with the condition are able to participate fully in life, enjoying hobbies, participating in sports, achieving in education and, in some cases, able to hold down jobs, and form romantic relationships.

To date she has, I believe, refused to apologise for the term, or admit that it was inaccurate.

But a few days later, as a result of the comments received, the newspaper ran an article by another journalist offering a more positive perspective.

So, language both reflects AND influences how people think and how they react; and the patriarchal phraseology and out-dated, inaccurate descriptors that originate in the traditional ’medical’ view of disability contribute to a negative and invalidating stereotype.

Language, then, is one of the socially constructed barriers that constrains those people who have a physical, intellectual, or psychological impairment.

Therefore, one way in which we can begin to change society’s perception of disability is to change the language we use to talk, and write, about people with impairments.

As I hope the examples given above have shown, bloggers can be great influencers.

Their influence extends beyond the online world into the real world of politics, business and society, and in some instances has been instrumental in bringing about socio-political change.

It is not just their opinions and ideas that their readers or ‘users’ adopt, sometimes the actual words they use are taken up also.

Blogs and other internet sources are rapidly becoming the first choice for those seeking information and news, and in some sectors are overtaking the mainstream media, which is having to change to meet the challenge presented by the online world.

This is where online communication and activism, and blogging such as ours, comes into its own.

As a public platform that can be accessed by anyone, the internet offers a voice to the voiceless, and because of its unprecedented reach, both in terms of user numbers and geographical spread, it allows that voice to be widely heard.

As bloggers ourselves, then, WE have the tools in our hands to bring about change. Our tools are the words we use.

By employing more positively-nuanced language and terminology, that references disability in terms of society rather than the individual, and by rejecting and challenging phrases that dehumanise and devalue, then it is possible, that we may be able to effect change in the way society perceives people who have impairments, we may also cause the traditional press to re-evaluate their presentation of such issues also.

Potentially this could lead to the perpetuation of a positive image of disability and impairment, but as with all social change, if it happens it will be a protracted process.

And I suspect that it is more easily said, than done in practice.

Special Needs Parents: Getting the Chop

I would never have associated me getting a haircut with bravery.

I have never really known what to do with my thick, heavy, sit here there and everywhere hair. It is wavy, uncontrollable and to be totally honest, completely out of my current hair maintenance skills. I am an awful hair stylist!

I wasn’t always- for years I styled my own hair, my friends’ hair and I once even styled bridesmaids hair!

Then I became ‘mammy’, time to style my hair let alone anyone else’s was something I never gave priority to.

There was always something more pressing to do like cleaning the walls, floors, toilet …with a house full of boys; hair styles become non-existent or important to me.

I decided to cut it all off… not, I personally, (I am not that daring) – I paid a professional to chop my hair right up.

Short. Not a little short, I mean short, short.

Is that brave?

The only person who asked me why I wanted it short was the hairdresser, who bless her, was a tad nervous of cutting up my shoulder length hair.

“I tie it up, every single day. I don’t know why I have it long anymore. I don’t go anywhere and I rarely have an occasion to get it put up into an up-style, let alone a valid reason to have it nice and straight or curly, so why not cut it up” I smiled at her in the mirror. “And I would like a change. If I don’t like it, it’s on me, not you and thankfully,” I smiled, “my hair will grow”.

She nodded thinking of what to say next. Then she said what every good hairdresser would and should say “Tell me, you have an idea of what style you would like?”

And like every good customer should do, I had to hand the style I figured would suit me and asked for her honest opinion.

“Oh yes, that should suit. Now, are you sure?” She smiled, scissors ready.

I gave her the thumbs up and she began to chop into my long hair.

As my thick unruly locks fell from my head, I closed my eyes. With each newly liberated piece of hair, I felt lighter. I began to relax my shoulders.

Each time she cut more of my hair, I smiled.

She probably thought it was the strangest of reactions but I really didn’t care. I enjoyed sitting on that chair feeling my hair fall all around me.

Opening my eyes to see my short hair; now that took some bravery.

I took a deep breath, I peeked through one eye.

The hairdressers laughed.

I opened both eyes fully. “OH WHAT HAVE YA DONE” I exclaimed, then I began to laugh. “I love it. I’m only messing with you”

She giggled, “What do you think? I’m going to blow dry it now for you!”

“I am so relieved that I don’t look like a boy!” I blurted out my real, genuine fear about having my hair this short.

Suddenly I saw a different version of myself in the mirror. I felt excited!

It felt liberating.

It felt like I was taking back a bit of control.

It felt like I was making a change for me and me only.

A change which for once, I controlled.

I don’t control much in my life; I can’t control the pains which cause my son to have meltdowns…

I can’t control the rate of progression my son’s syndrome take.

I can’t control or plan family day outs; as it can all change in an instance, and normally because of something I could have never seen coming, despite my years of experience with meltdowns, autism and sensory issue.

And, of course, the bottom line is; I have no control over the syndrome that is stealing my son away from me, bit by bit.

While I do think making a drastic change in any part of your life does indeed take some form of bravery; I now wonder is there something else that drives a person to do such a bold and daring thing.

It wasn’t something I ever considered before until I was the one they called brave for cutting off my hair.

I would have called my friends brave for chopping off their hair too; but now, now I wonder if its bravery mixed or diluted with something else?

For me, it was definitely control diluted with bravery with a dash of stubbornness thrown in.

It has been four weeks since I cut my hair.

I have no clue if I will keep it this short or not, yet.

I do know now that having short hair takes more time in the morning than I could ever have possibly imagined, or maybe it could be that just I am that crap at styling?! (That’s a strong possibility)

I am also discovering the styling products that are out there which helps maintain short crazy wild hair.

And that cutting my hair really didn’t make it any less ‘wild’.

Oh well… it’s only hair!

Special Needs Families: Epic Parenting Fails from an Expert

You may not believe that if you read certain newspapers, which think only non-working, tidy mothers who never laugh about the boring minutiae of the daily grind are acceptable.

As a therapeutic example of someone who has managed to parent for the last 18 years, I bring you a heartening list of things that may come up in my children’s future therapy sessions.

Full of love and emotion I told the eldest (aged 2 at the time), “I can’t love you any more.”

It came out of my mouth meaning, ”I’m utterly consumed with the depth of love I feel for you; I love you so much I simply couldn’t love you any more than I do”.

It entered two year old ears thus, “Right, that’s it, I can’t love you anymore – Good bye.” Cue screaming.

Yesterday, concerned about future proofing our house I searched on a property website for bungalows.

As I did this the child with the mobility issues who had prompted the search started up the stairs unsupervised and fell down them, backwards, hitting her head hard.

Cue screaming.

Worried about my oversensitive sons ability to fit in at his new school, I told him to never cry in front of his friends as they would be mean to him.

He probably in my opinion, needed to toughen up and pull himself together.

He mashed all of his emotions down as a result and ended up with depression.

His ‘oversensitivity’ turned out to be part of undiagnosed Asperger’s syndrome.

A professional told me that the boys problems resembled autism. I thought about it, and disagreed vehemently.

This delayed his chance of having an official assessment and diagnosis with the attached support.

I did this because his younger sister had significant disability and learning difficulties and I could not cope with having two children with additional needs.

Please note that my decision did not miraculously cure his autism.

Cue screaming (mine).

I told Aspie boy (pre-diagnosis) to listen better as his ears were big enough.

Subsequent testing showed he had significant Auditory Processing problems.

My go to reaction to the cry, “But I want it!” is, “I don’t care what you want”. I suspect that there is a better way to word this while maintaining the upper hand, but it rarely occurs to me.

I can’t lie about my level of interest in computer games, Manga and Anime.

I absolutely do not have a poker face; my disdain is clear to see.

In the steely watches of the night these things come back to haunt me. Despite them my children appear to love me, tease me and laugh at me, while largely remembering that, ‘I’m the Mummy”

Hopefully these things will build huge reserves of strength and emotional resilience in my dearly beloved?

I am for Good Enough and lashings of love.

I hope my aim is true.

The Top 10 Summer Stresses for Special Needs Families

It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast.

I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.

These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily.

But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not.

I find so many things stressful about having my disabled children with me all the time. I am not alone either.

Here are the top ten summer stresses faced by so many special needs parents today:

1. Lack of changing facilities. 

I want to take my children to soft play, parks, swimming, museums and day trips.

The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities.

I need changing places toilets and these are so hard to find.

For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lively weather and families want to go out together making memories.

None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.

2. Lack of disabled trolleys in shops.

My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream.

In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school.

Although online shopping is handy there are days I just need to be able to pick up a loaf of bread and milk but something so simple is so difficult and often impossible if a store does not have a suitable disabled trolley for my son.

I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son.

In 2017 this really should not be the case.

3. Lack of playing facilities in parks.

My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout.

Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use.

Parks should be inclusive not just for the mainstream elite.

The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families.

4. Access

Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs.

Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible.

I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access.

The United Kingdom is far from disability friendly sadly.

5. Autism friendly hours that are not autism friendly times!

I am delighted that more and more places are putting on quiet hours and autism friendly times.

However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access.

Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine.

Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many.

6. Lack of respite

Being nurse, therapist, attending appointments and getting very little sleep is draining.

The majority of special needs families have no summer respite and little support through the long weeks of summer.

This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health.

For special needs families school offers necessary respite which they can not access all summer long.

It makes for a very long summer indeed.

7. Inability to use household items due to sensory issues

I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine.

These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain.

Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.

8. Lack of sleep

I can cope when my son does an, ‘all nighter’, when he has school as I can rest or nap while he is out.

When your child/children need 24 hour care and you get very little sleep that has to take its toll eventually.

By week three of the holidays I have no idea of the day f the week or even my name as sleep deprivation kicks in big time.

9. Lack of support.

Therapists vanish in the summer, as do health professionals and social workers!

While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long.

It is also detrimental to the children who require continuity and routine.

Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful!

10. Isolation

Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’ making trips out of the house so difficult.

Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be.

For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child.

With time, money and planning so many of these stresses could be overcome.

A little respite, businesses and community groups installing changing places toilets and more shops purchasing goto trolleys suitable for disabled children and life could be so much different.

Have a think. What could you do to make summer easier for a family with a special needs child?

Firefly Loves Seenin

For this writer, I love shopping for other people; I think it’s so special, being able to find fun stuff that I know they will love.

One special needs mum did something amazing so that she could get her daughter exciting and stylish products to suit her needs.

That mum was Lucy Carr-Seaman, the founder of Seenin.

Seenin is a company that aims to provide outstanding products that provide comfort and style to their customers, those among us with additional needs.

Lucy Carr-Seaman’s daughter Hester is her inspiration.

Hester was diagnosed with Aicardi Syndrome at a very early age and Lucy quickly realised how difficult it was to find products for her daughter that were practical, which is obviously very important, but also stylish.

This mum’s passion for finding solutions for her daughter led to the founding of Seenin over 15 years ago!

Seenin is fantastic, I’m sure you’ll agree, here at Firefly we love it!

I’m going to share some of our tip top picks from Seenin with you now, maybe you’ll find something you or your little ones can’t do without!

Seenin’s kerchief range – This range has so many options!

Seenin supplies the classic kerchief range, side fastening kerchiefs, flip kerchiefs and neckerchews for those tiny teeth.

All of these styles are available in different colours or really cool patterns (my favourite is definitely the dino pattern, with the anchors in a close second place).

Firefly’s personal favourite is the new Bamboo Towelling range.

These kerchiefs are super soft and more absorbent than standard cotton kerchiefs, they’re also quick drying which is a big plus in our book!

Changing mats for children and adults – these mats are a dream!

They’re available in two sizes, so are suitable for a large age range.

You can get these mats in a bright cerise bink, a soothing teal, or a pretty raspberry colour; there’s the option of adding an extra layer if you think you should need it as well.

The best part? They roll up and can be slung over a shoulder or around a wheelchair handle, brilliant right?

Front Opening Sleepsuits – we think these are great!

Available in cotton jersey or fleece materials, depending on the season, these are a must have.

You can even get slipper socks in either material that can attach to a sleepsuit for full coverage and cosiness.

These sleepsuits unzip from the neck to ankle in 3 easy steps, this allows easy access for dressing and feeding, night or day and we love them!

We hope Lucy and her team keep rolling out these awesome products for all of the people they are keeping stylish and confident!

Do you use any of Seenin’s products?

Tell us about your experience, we love to hear your stories!

When His Disability Is No Longer, “Cute”.

We were told amongst many things that he would most likely need assistive devices for walking, possibly breathing, and have no quality of life.

I remember being pregnant.

As each day progressed, the more the fear inside me grew.

I did not fear having my child, because there was never a point after his diagnosis that I wanted to take the doctors’ up on the abortion they kept pushing me towards.

Honestly, my fear stemmed from me not knowing or being able to picture what my child would look like.

It was almost like my thoughts came out of some alien movie. I knew my child would come out a human, with the previously counted ten toes and ten fingers. Two eyes, a nose, mouth etc….

Yet I could not picture what he would look like with everything pushed into my mind like breathing equipment, assistive devices.

I mean, what does someone with, “no quality of life”,  look like?

This was never something I prepared for in the baby books I read, or even anything I saw in the medical books I studied while in college.

But time went on, much shorter than planned, and Oliver came just shy of 31 weeks gestation. Everything I had feared vanished into thin air.

Now, in my hands, I held the most beautiful baby I had ever laid eyes on.

Here we are, three years later, and I still get compliments almost daily at how handsome my Oliver is.

He sports the blondest hair you’ve ever seen alongside ocean blue eyes.

Intellectually, he speaks above average for his age, and that just adds to his cuteness.

Whenever we are out and about, zooming in his wheelchair, I never fail to hear the sighs and, “cute”, compliments.

“Bless his heart, he is adorable.”

“Wow, look at that smile!”

“Awwhhhh, look at him in his wheelchair!”

They go on and on..

But what happens when he gets older, and isn’t a tiny three year old in a wheelchair?

People will no longer be shocked to see such a small child mastering a wheelchair, but just a teenager or adult in one.

The, “cute”, compliments stop coming and I fear the worst..

The rude comments, the stares, possibly even the bullying.

I know I have a ways to go and am hopeful I can teach my son to handle any situation properly.

However, with the news we see nowadays, a worried mom can’t help but do just that…..worry.

The Power of a Hug

I was transported back to Manchester Children’s Hospital, the clinical trial ward.

We spend quite a lot of time there as my youngest son has Hunter Syndrome, a progressive and life-limiting condition.

Our visits are full of emotional ups and downs – balancing the hardship of putting him through yet more medical procedures with the possibility of saving his life.

Sometimes we meet other families riding this roller coaster too.

That time in December 2015, I’d chatted briefly with another lady while her son played football with mine. Later, she was on the ward again talking to one of the doctors.

I didn’t know what condition her son had or what the doctor was saying but I could tell it wasn’t good news.

It was written in her body language – the nervous hands and anxious questioning.

I know that feeling myself, the way you listen intently to the worst news you can hear while hoping upon hope that the doctor has got it wrong.

Leaving the room so they could talk I remembered all the times since diagnosis that the empathy of others had saved me.

I remembered falling apart on my sister when I first told her the terrible prognosis, the portage worker who cried with me when the tests confirmed it, our specialist nurses who were there for me whenever the trip for weekly treatments became too much.

I remembered and I knew what I needed to do.

The doctor left.

I walked straight to her and wrapped her in a hug. We didn’t speak; there wasn’t anything we needed to say.

She sobbed on my shoulder for five minutes and then dried her tears as she couldn’t let her child see her distress.

Sometimes we can feel so powerless to help anyone when there are so many insurmountable problems in the world.

But the simplest of things can make a difference. I know it made a difference to that lady.

I saw her again a year later and she told me that on that day it felt like I’d been sent by God to help her when she needed it.

I’m a lifelong atheist but that’s quite possibly the best compliment that I’ve ever been given.

So when my eldest son asked me the question that’s what sprang to mind.

If I could do a good deed for anyone it’s to be there when someone has been told the worse news.

I’m not a scientist or a doctor; I can’t find a cure for terrible diseases or provide treatments.

But I can give a no-holds-barred hug, a hug without words or promises that it will get better, a hug to hold someone together when they need it most.

We all can.

It is Summer

My Summer – My Summer will be a little like a battlefield.

I will be gauging my son, Ethan’s reaction or possible reaction to everyday Summer occurrences.

I wish I could tell you guys that at the end of most evenings a glass of wine will be had, but that too comes with a heavy price.

So, more often than not, I will forgo the wine for a nice hot cup of coffee or tea… yep, that is how this mammy rolls (not by choice but by circumstance!)

Every parent who has a child bound by routine will tell you school ‘breaks’ and ‘holidays’ are a lot like walking a tightrope, blindfolded, without a net… while smiling, cooking, cleaning and keeping your other children happy and entertained for weeks that seem to never end.

I will be deep in the trenches, praying for September to come as fast as it possibly can.

I do not like Summer Holidays – it is far, far from a, ‘holiday’.

(I bet right now every parent who has a child with extra needs is saying “I hear ya mammy!”)

I don’t ever have to set an alarm; my darling wakes up between 5am and 6.45am daily.

He does not care if it’s a Saturday, if mammy had too much wine the night before.

Baring that in mind, do you think he cares if it is the Summer Holidays?!

That kid is up, which means I am up.

Just as my son is getting into the routine of his bus coming, seeing his teacher and SNA (special needs assistant), doing his work at school, coming home to dinner, going for a walk, doing his therapies, letting me administer medications to him, going for another walk, tea time, then bed time, then – WHAM BAM – there’s another mid-term, ‘break’.

’Break’ – which means a break-down really, because ladies and gents, we all have to spend time getting him used to not having school for X amount of days or weeks.

Then we’ve to get him back into the routine of school which, surprise, surprise (!!) takes another few weeks which leads us to either another mid-term ‘break’ or Summer ‘Holidays’.


Then there is the fact that he can’t attend a Summer camp.

There are not Summer camps equipped enough to handle him – never mind to handle him while he is bang out of routine.

The training alone would cost a small fortune, we’d need a nurse on site, a person who is trained in handling violent meltdowns, and someone who can calm him in order to help him regulate, not forgetting a personal assistant to help with his feeding, dressing…

You get the idea, I’m sure.

There is no such Summer camp here unless you count me and him being at home with me?

The long (relatively) lukewarm Summer days…

My darling hates the heat, we are lucky though as we don’t see much of it here in Ireland but when that sun does shine, my little dude cannot cool himself down, so we’ve to ensure that he doesn’t over heat.

We only go to beaches either early in the morning or late in the evening, the heat being one reason but people being the other.

There’s no rush to get to the beach from our home; trust me, it simply isn’t worth it.

Too many people, too much noise, too much movement all around him sends him into a panic and, sure as the sun will set, a meltdown follows soon after.

Our other boys are happy to go when it’s likely that there will be less people there; they are young and obviously wise.

He stands waiting for the bus for the first few weeks of his, ‘holidays’.

I would be lying if I told you that, that doesn’t upset me, but I have to let him wait then try to distract him…

For hours, because as soon as I stop, he is back looking out that window.

No longer can we bring him out on day trips, our trips must be close by, short and wheelchair accessible with accessible toilets not just the ones with the ‘baby changing table’ clipped to the side (what is that all about?!?)

Don’t get me wrong, we will enjoy not having to be on time with the other two boys but with Ethan it is different.

The appointments slow down, they don’t stop. We won’t always have to be rushing, which will be nice.

We will take a few trips which will last roughly three hours and we will have water fights, ice cube fights, lazy days where we just about get dressed, we will watch movies all day long, we will pick flowers in our local park (if you see us there please don’t report us, we only ever take three!) we will ride bikes, kick footballs and roll in the long grass..

..but we will still be counting down to September …

And when September comes, we will miss the days of Summer where we didn’t have to prepare Ethan for a new teacher, a new classroom..

…he will get into some sort of routine over the ‘holidays’ (regardless of it being less strict, less planned- who am I kidding, nothing will be planned, but he will get used to staying with us the whole day.)

He will eventually forget about the bus, school, his SNA, his escort on the bus, just as September comes knocking, we will do it all again and get him back into his school routine .

There will be tears and tantrums but we will do it, then it’ll be mid-term ‘break’ and so the cycle continues…

But hey, for now we will just get through the Summer as best we can, as I imagine most parents do.

The Definition of a Friend

There is the definition of friend. I wish it were that simple. Things in life are rarely that simple.

I think all the time about Amy and friends.

I am lucky enough to have a wealth of friends, so many people I can confide in, spend time with, laugh about things, be sad about things.

People who make me feel I have value and importance in life, people who validate me, care for me, and make me feel important.

Does Amy have this? She does. Does she know she has this? I’m not sure.

I always assume cognition with Amy, and indeed with everyone I meet.

Just because her body doesn’t let her express herself how we do does not diminish her purpose or mean that she has nothing to say.

My heart aches sometimes when I ask her how her day was.

I read her school diary to see what she has been up to and I read it to her. “Wow, you planted some flowers today with your friends? That’s awesome. Were they pretty? Did your friends help you? I can’t wait to see them.” It’s all a one sided conversation.

I used to be a bit self conscious in public places about how my talking to Amy would be perceived. But now I don’t care.

I just live day to day hoping one day all the of the PECs symbols, sensory support work, speech language visits will equate to her being able to tell me things.

She’s probably sick of mummy constantly asking her questions that at the moment she is unable answer. What if inside she’s screaming out to answer me and I’m just rambling on.

I am getting tearful typing this.

We have a lot of playdates. Playdates where I’m not fully sure how much Amy is appreciating that this is a playdate.

I constantly compare her childhood to mine. The two were very different, but I hope both are happy.

I had friends stay over, I went to sleepovers, I know Amy is a bit young for that now, but I wonder about the future. I don’t even think that would be possible except at respite.

I remember sleeping top to tail with my friend, we would stay up chatting and giggling into the night. The whole thing was the best thing ever.

I just wonder what does friendship look like to Amy?

Personally, she is my best friend, and I am probably hers. But what about when that’s no longer cool?

She has Mia, Jess, Persephone and lots of other able bodied friends. She has known them since birth.

They are all at an age where they are learning their differences. They see that Amy is not like them… Amy needs a tube to eat, Amy needs a wheelchair (not a pram!!).

My heart burst with pride when Amy’s friend Mia pushed Amy around the shop in her wheelchair. In my head that was like they were walking hand in hand, skipping a long.

Her able bodied friends are all incredible and understanding. They don’t judge, they don’t bully, they include and are interested.

Thanks to all of their parents for raising them to celebrate differences. I hope hard that they all remain part of our lives.

Amy also has Mia (other Mia!), Archie, and so many other friends with varying degrees of disability. Mia and Amy spend so much time together at school, respite, or at each other’s houses.

They like a lot of the same songs and activities so quite often you get a good 2-4-1 deal when singing or putting certain videos on.

These are the friends that can’t speak to each other. They can’t be silly together at the dinner table, or cut each other’s hair behind mummy’s back (referring again to my own childhood!).

Our days out very much feature wheelchair friendly venues, places with lots of space, places that aren’t too busy but have that sensory input they need.

Trips to the park are a game of, “Can we go on that?” and, “Why is that child staring?”

Each of our friend meet ups is so different because of our child’s different needs.

There are a lot of “typical child” places we can’t get to or fully access. We have to try and enjoy it in a different way.

Soft play centres for example are becoming increasingly hard.

I’m not going to lie, and I am sure my friends will understand when I say this. But there are days it can really hurt seeing the developmental gap between our children grow further and further apart and I see how different the mother-child relationship is.

But at the same time, I need to see it. I want to be around “normal”.

I want so desperately to be a part of your world. We don’t want to feel like a visitor to your world, we want to be a real part of it.

When you complain about your child refusing to go in their pram because they want to walk everywhere and you’re there juggling wobbly toddler and flimsy pram… please don’t suddenly apologise when you realise my child can’t and probably won’t ever walk unaided.

Your problems are relative to your situation. Sure that’s a problem I wish we had. Your comment wasn’t insensitive… you just invited me into your world and let me be a part of it.

Sure, a lot of these struggles are temporary… in 6 months time the pram won’t even feature in your days out and you’ll miss them falling asleep in it and having it with you. That’s fine, it’s just life.

Seeing your child thrive and grow is also a beautiful thing to me.

I watch in awe as your child uses their fine motor skills to navigate their favourite ipad game. I watch in amazement as you explain to your child how to safely cross the road.

I recognise the challenges you face – raising any child is hard and you’re doing it amazingly.

I thank you for your patience with us, we aren’t always the easiest to be friends with. But the fact you still care and want us in spite of our unreliability and demands makes you a super friend.

Friendship with other special needs families is different. You have a lot of the same care team and specialists. You can talk for hours about splints, wheelchair straps, formulas and so much.

Friendship with an SN parent is a tricky one. You can’t have your only common ground be that you have a special needs child.

There has to be more to it than that, for me at least. I have made friends with mums that I probably never would have met had it not been for our situation.

Through our children we have learned to navigate this world and build unlikely friendships that will last forever.

I love when you are in a waiting room at hospital and you suss out who else in the room is “one of you”. It’s very easy to make conversation “we have the same feeding pump bag!” is an easy segway to friendship.

Chances are you probably already spoke online on one of the forums. It’s amazing.

Whatever happens in life, I just hope that Amy never ever feels lonely or excluded.

I hope that she continues to have a variety of amazing friends from all different backgrounds and that we create a new “normal”.

I hope we always find ways to be included even if it isn’t the most conventional or obvious option.

I hope that all of her friends know how intensely lucky they are to have her in their lives and that they appreciate her and adore her even half as much as I do.

She has so much to offer and I don’t want anyone to view only her limitations but the potential and amount of love she has to offer.