Blogging About Disability Part Two: Groping for Words

It may sound like Pie in the Sky to believe that a careful choice of words could really bring about social change – but I for one think it’s worth a shot.

Anything to bring a more accepting, more positive, world for our children.

Ultimately, perceptions of disability CAN affect public policy: imagine if your local council’s Cabinet Member for Children were to describe disabled children as ‘having no future’– you can guess which kinds of service would suffer if budget cuts were required.

Language is a free resource that we all use every day, so it would cost nothing to try – except perhaps some mental effort, because, as I discovered 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, since (as mentioned above), language both reflects and influences how people think, and how they react.

The area is far more of a minefield than I had imagined.

The most pre-eminent guidelines that exist for writing about people with disabilities is to use ‘Person-First’ or ‘People First’ language: that is, to place the emphasis on the person, who happens to be living with the disability, rather than on the disability itself, thus avoiding defining the person by their impairment.

That is what I have always tried to do because I thought it was the right thing.

However, as I have now discovered, many self-advocates in the British Disability civil rights movement reject the use of Person-First language. Why?

In her article Person-First Language and Ableism, Amy Sequenzia sets out the reasons why she, and many others, object to its use.

She argues that the Person-First language concept is ableist because:

– It was co-opted by the non-disabled who believe that they are the authorities in what Disabled people should say and how they should identify themselves.

– It tells us that we should ‘see the person, not the disability’ – but if you see the person and not the disability, then you are only getting half the picture; you are ignoring a very important part of that person’s experience and identity.

– It helps the stigmatization of Disabled people, because instead of ‘seeing’ them, society ignores them, and in doing so denies the political dimension of their identity, making them, politically, voiceless.

– By demanding the use of Person-First language when it has been rejected by Disabled people, society is making the issue all about their choices instead of respecting the choices and opinions of Disabled people, effectively silencing them and implying that they are non-persons who cannot, or are not capable of, defining themselves.

*Note: her use of the capitalised D in Disability is something advocated by many in the civil rights movement to emphasise the political connotations of the word.

So, if we’re not supposed to use ‘person-first’ language after all, what should we use instead?

Many in the British civil rights movement advocate ‘indentity-first’ language, which has its origins in a new school of thought emerged from the disabled people’s civil rights movement in the mid-1970s, known as the ‘Social Model,’ or ‘Barriers Approach’ (Union of Physically Impaired Against Segregation, 1976; Oliver, 1983).

In the ‘Social Model’ disability is redefined as pertaining to the disabling effects of society rather than the functioning of a person’s mind, body, or senses; a disabled person is defined as being a person with impairments who is disabled by socially constructed barriers.

Whereas the Medical Model confuses disability with illness, looks for medical solutions, and views the difficulties experienced by a disabled person as a ‘problem’, the Social Model views them as an expression of a need – a need which society has failed to meet.

The British civil rights movement rejects the term ‘people with disabilities’ (although it is accepted by those in the US) because they believe that the term inherently implies that the disabling effect rests with the individual rather than with society; it also denies the political dimension of the ‘disability identity’.

They maintain that the word ‘disability’ used in this context refers to a person’s medical condition, and therefore confuses disability with impairment.

Disability itself is not the, ‘problem’, the real problem lies in the attitudinal and environmental barriers that exist in society:

‘Physical difference, impairment or functional limitation is not disability. Instead, disability results from the constraints that the dominant culture consciously or unconsciously places upon people who physically, intellectually, or psychologically differ from some arbitrarily defined ‘normal’.’ (Russell L. Johnson, Health and Disability)

So, in practice, what language is acceptable to use and what is not?

One important consideration is the origin and hidden implications of a particular word or phrase.

Many terms once in common we would now regard as unacceptable, yet other people wonder what we’re ‘making such a fuss about’. These include:

– Emotive terms such as ‘afflicted’, ‘restricted’, ‘stricken’, ‘sufferer’, ‘unfortunate’, and ‘victim’. These are unacceptable as they reflect negative reactions to a disabled person.

– The phrases ‘wheelchair-bound’ or ‘confined to a wheelchair’, as both are emotive and inaccurate, since wheelchairs are pieces of equipment that empower rather than restrict the user.

– Phrases that dehumanise and objectify, or deny individuality, such as ‘the blind’, ‘the deaf’, ‘the disabled’, and so on. These are regarded as oppressive by the civil rights movement.

Acceptable alternatives include ‘blind people’, ‘deaf people’, ‘disabled people’.

– The term ‘able-bodied’, used to describe those who are not disabled.

This is considered unacceptable because it ignores the fact that some disabled people, for example, those with learning difficulties, may also be ‘able-bodied’.

The term non-disabled should be used instead.

– Disabled toilet/ entrance. It’s an accessible toilet/entrance.

– Phrases that portray impairments as an obstacle to be overcome, for example: ‘physically/ mentally challenged’.

Such terminology ignores the societal barriers that disable people by placing the emphasis on the impairments themselves as the ‘challenging factor’.

– Terms that refer to people solely by their impairment, for instance: ‘a dyslexic’, ‘an epileptic’, ‘she’s a Down’s/ Down’s Syndrome’ or ‘he’s Cerebral Palsy’.

Wherever it is necessary to refer to an individual’s impairment, then it should be phrased as ‘a person with …,’ or ‘a person who has…’

– Invalid. The use of the word in this context originated from the military description of someone not fit for service as ‘not-valid’.

Its use perpetuates concepts of the disabled as non-functional members of society, and therefore less than human.

You will note that all of these phrases are still in common usage in the mainstream media.

Now that I am aware of this, it makes my blood boil.

If I still read newspapers in print form I’m sure that every copy I picked up would spontaneously combust within minutes.

There are a couple of phrases, though, that I know I am guilty of using, because I cannot think of an easily-written, easily-read alternative (note to self: must try harder). These are:

– ‘Special Needs’ – this term was coined as an attempt to de-medicalise the labelling of disabled children, in the belief that a label based instead on educational need would be less negative.

However, this still stigmatizes and excludes the child, by promoting the assumption that such children required segregated provision.

The ‘needs’ referred to in this phrase are usually determined by professional assessment, and may even be a product of the environment into which the child has been placed, school, for example.

In a different, more supportive environment those needs may not exist, or may not be viewed as abnormal.

– ‘People with learning disabilities’. This term originated in the health service. It was rejected by the civil rights movement because, like ‘people with disabilities’ it denies the social construction of disability.

People First, the largest user-led organisation of people with learning difficulties in the UK decided against its use on the grounds that: ‘If we talk about disabilities, it makes it sound as though we can’t improve. Everybody with a learning difficulty can improve, even if it is only a little’ (People First 1992).

– Carer: as this implies that disabled people need to be looked after and can never achieve any degree of independence; it is patronizing and conceals the fact that many of the problems encountered by disabled people are a result of society’s failure to address their needs.

This is where I’m left scratching my head, because how do I replace the phrases ‘Special Needs’ and ‘carer’ in my writing?

‘Additional Needs’? ‘Impairments’? ‘guardian’?, ‘companion’? ‘key-worker’?

Answers on a postcard please.

There are certain criteria that we can use to help us decide whether a term likely to be acceptable.

The writer should consider whether the word or phrase:

– Is based on the social model of disability, locating the root of disablement with society.

– Has arisen from self-definition or self-identification.

– Is likely to affect the perception of other groups (as in the case of ‘carer’).

– Has discrimination, paternalism or pathos inherent or implied in it.

There are those who would say ‘this is political correctness gone mad’, but I think if there are Disabled people out there telling me that there are certain words or phrases that I shouldn’t use for one reason or another, then I should listen and do my best to respect their wishes.

I acknowledge, though, that I will sometimes inadvertently get it wrong.

Many bloggers write simply to ‘get things off their off their chest’, as a form of catharsis or self-therapy, and would not define themselves as activists.

I would include myself in this group of people.

But there is a little bit of me (OK, hands up, it’s my ego, and some would argue that it’s not so little) that really relishes the idea that just by doing something I enjoy I could, with a few careful tweaks, be doing my bit to influence the world for the better, for children like ours in the future.

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.

Special Needs Parenting: My Life As It Was Meant To Be

But, though Down’s Syndrome brings many things to family life, it sadly does not bring immortality for parents and carers.

So I have to settle for remaining as healthy and active as I can for as long as possible.

Since a dip in the local fountain offers, not eternal youth, but only hypothermia and several nasty diseases, and virgin’s blood is in short supply these days, that means I have to resort to exercise.

Gym membership comes under the heading ‘complete waste of money’ in our household budget, and, to be honest, it is very likely that, left unsupervised in a room full of interesting-looking equipment, I would do some damage – if not to the equipment (what-the-hey, it’s insured) then to myself (I’m not – you can’t get the spare parts).

I try to make sure that I walk for at least thirty minutes, several days each week.

This is never pleasure walking, though: it always encompasses whatever errands I need to run that day.

While it’s a great way to burn a few calories and get the heart pumping (and it’s free) it doesn’t feel like enough.

So I recently decided to take up swimming.

It’s a great all-around workout that’s gentle on the joints and is also really calm and relaxing.

I am lucky enough to be able to make it to a public swim session on Thursday lunchtimes while Freddie is at school, so I get to actually swim, rather than just float around supervising kids.

Even going just once a week has got to be better than not going at all, right?

I’ve never been swimming on my own before, always with friends or my husband and children, so I felt a bit nervous the first time.

Two older ladies saw me hovering on the side, wondering if I’d got the right day because there was a notice up by the main pool declaring that it was reserved for swimming lessons.

They smiled so I asked them about the notice.

‘It’s only five to, they said, ‘they’ll take it down before twelve. We’re waiting for the training pool to open – it’s chilly in the big one.’

Perhaps the temperature in the main pool is a design feature intended to keep people moving.

But it was so long since I’d done ‘proper’ swimming that I had to stop every so often and cling to the side for a rest, and was acutely conscious that I might be getting in the way of more able swimmers.

I managed a few lengths in this bitty fashion, and was struggling back down to the shallow end debating how long I would have to stay in the pool to get value for money, when I saw one of the ladies I’d spoken to waving at me and beckoning from the entrance to the training pool, which was now open.

I couldn’t quite hear what she was saying, so I got out of the water and went over.

‘Why don’t you come in here, Duck, it’s warmer,’ she said, and added, in a conspiratorial tone, ‘because it’s for the over-50s’.

Cue an awkward moment of silence.

Over 50s?

Do I really look ‘over 50’?

Perhaps my puffing progress up and down the pool had been more laboured than I imagined.

Or perhaps it was time to admit that there is less than a year until I reach that milestone, and I’d be flattering myself to imagine that the years don’t show.

And it was warmer over here, and the pool smaller and shallower.

I would swim much more confidently knowing that I could stop anywhere and my feet would still reach the bottom.

Swallowing my pride was more palatable than swallowing freezing cold, chlorinated water every time I started to sink, so I got in.

As it turned out the lady was mistaken – it isn’t only the over-50s who use the training pool on a Thursday lunchtime.

I’m glad she was mistaken, she was meant to make that mistake: because if I’d stayed in the main pool I wouldn’t have seen four younger people gradually filter into the training pool that afternoon.

Four young adults with Down’s  Syndrome.

I am acquainted with many people who have children with Down’s Syndrome, but not many adults who have it.

It is not easy to imagine what Freddie will be like as an adult, what his life will be like, and I am grateful for any chink of light that can show us a glimpse of his future.

The first person, a young man, arrived with a companion, who might have been his Dad, or maybe a carer, I couldn’t tell – but the young man swam independently.

Then another young man and a young woman arrived. They too swam independently, and well – the young woman preferring to swim underwater, a graceful floral blur beneath the surface.

The fourth, a non-swimmer judging by her inflatable arm-bands, arrived with her carer, or perhaps we will call her a companion because she hugged the lady with such great delight when she managed to swim a few strokes unaided at the end of the session.

As I pootled up and down the pool it struck me how many times life has given me the clues and hints that I needed to see in order to believe that it is possible to raise a child with Down’s syndrome, and for that child to enjoy good quality of life: how many times life has gone out of its way to show me that I was always meant to be the mother of a child with Down’s Syndrome.

There was that day, years ago when a man with Down’s syndrome who used to work in my local McDonalds cleared my tray for me when he saw my hands were full.

The day when I was dashing around Sainsbury’s failing to find the jam, so I asked a member of staff who was stacking shelves and noticed only when she turned around to answer that she had Down’s.

Then there was the young man I used to see a couple of times a week on my way back from the school run, waiting outside the pub for his bus to the Day Centre; he’d greet me with a cheery ‘Hello’, and check the time with me if his bus was late.

And the little boy in my daughter’s nursery class – how glad I am that when she asked me why that little boy still wore nappies and still rode in a buggy I didn’t mention Down’s syndrome, I didn’t use that horrible phrase ‘something wrong’ (as has been subsequently used to my face); I simply said that some children take longer than others to learn new things, or for their muscles to get strong enough for them to walk for longer distances.

I don’t know how those words got into my mouth, I am not usually a tactful person, but I am so glad they did.

Years later, when my doctor talked to me about my ‘1-in-12 risk’ these were the images that came into my mind – real people, with real lives, whose everyday paths had crossed with mine. It would be untrue to say I was completely unafraid, but I was resolute – I knew it was perfectly possible to raise a child with Down’s Syndrome because I had seen empirical evidence of this with my own eyes.

I was meant to have all these experiences because Freddie’s life was meant to be. I was meant to be his mother. Our family life was meant to be this way.

It didn’t stop with Freddie’s birth, though. After a sleepless and profoundly emotional first night in our private cubicle at the hospital, I flicked on the breakfast news programme, looking for a sense of normality, a sign that the world was still turning on the same axis.

No sooner had the screen blared into life than the presenter announced that coming up later would be a report into newly released figures that suggested more people than ever, given a prenatal diagnosis of Down’s Syndrome, were choosing to continue with the pregnancy.

I don’t know how well the figures correlated with on-the-ground reality (you know the saying ‘Lies, damn lies, and statistics), but it was what I needed to hear, precisely when I needed to hear it.

Later my husband walked into the room bearing a newspaper – not something he would normally buy. He hadn’t opened the paper, so hadn’t seen the centre-spread article: ‘Loving Eddie Was Easy’, written by the father of a boy with Down’s Syndrome.

The timing could not have been more perfect.

It’s almost as though it was meant to be.

Special Needs Parenting: Never Say Never

I thought that life’s plan was easily mapped out before me and things would magically fall into place.

On the list was:

Graduate College…check.

Get a good job…check.

Get married…check.

Have babies…check.

I had no idea of the events that would unfold in my life that would make me realize that my plan had a serious detour coming.

Abruptly, the real world, the universe swiftly kicked me in the pants with a wake-up call.

All of the wonderful milestones of life that I had dreamed of did take place, and I’m blessed beyond measure to have a wonderful husband and two beautiful children.  But, I have learned that the easy road doesn’t exist.

As a special needs mom, I do things every day that I never imagined I would do.  For the ones that matter most, I’ll never say never when it comes to what is best for my children.

I always thought that doctors knew best and if one recommended a prescription medication, we should take it, without question.  WRONG.

Having a child that depended on ADHD and Anxiety medications, one day I became enlightened.

We shouldn’t have to medicate our children so that they can make it through a school day.

Feeling fed up with how things were going, we decided to homeschool.  We learned that classical music improved concentration and that our son loved it!

A stay at home mom with a child doing schoolwork from home?  I never thought that would be in my plan.

We also found a specialist that understood our concerns of the side effects of stimulant and anti-anxiety drugs.

We found support, natural medication and we successfully stopped the prescription medications. The result – a happier, healthier, well-adjusted boy!

I never thought I’d be a mom that would spend hours researching holistic and natural remedies.

When my daughter’s reflux medication stopped working effectively, the “solution” was to add another medication into the mix for her.  A medication that had the potential to someday affect her one solitary kidney.

The meek person that I once was vanished; enough was enough. A mom who would have never questioned the expertise of a physician now questioned everything and picked apart every single detail.

Essential oils, apple cider vinegar and a plethora of other remedies are out there – and I will log many more hours researching to find what naturally and safely works best for her.

Political government was something else that I never thought I’d insert myself into. How ignorant I once was to believe that as a citizen it wasn’t my duty to take an active stance for others.

I am no longer afraid to stand up for what I believe is right.

My children gave me reason to become involved and to stand up and speak out for those without a voice.

never thought I’d shake hands with Senators and thank them for supporting a Medical Cannabis bill in our state…and I never thought I’d be writing letters and making desperate phone calls to opposing Representatives, pleading for their support of it.

In addition, threats to our children’s medical coverage and to the Individuals with Disabilities Education Act by lawmakers has given way to a louder, stronger mom that will never sit idly by again.

I’ve learned many beautiful, difficult and uplifting lessons because of my children.  I’ve adjusted my sails and I take life’s path in stride.

Although I never imagined this is where I would be, happily, I know this is where I’m supposed to be.

This is where I’m meant to be.  Now, I know better, and I never say never.

Special Needs Parenting: How I Stand Up for My Daughter

She still needs a lot of extra help. Watching her grow from an under 2 pound tiny premature infant into the lively, happy, taller-by-the-day girl she is today, has been such a joy!

Sometimes I have to stand up for my daughter.

The circumstances vary- it could be in regards to an ill-informed comment on her ability to learn or understand something, or in response to a child making a cutting remark about Brielle.

I speak up for her, because she cannot speak up for herself. She is defenseless in that regard, and an easy target for teasing or pity.

I’m so thankful that Brielle is oblivious to words that would hurt her feelings otherwise.

She is the most innocent, trusting and happy girl I know! It really breaks my heart that there are people in the world who look down on her because of her disabilities, who discredit her abilities, who would tease her for her appearance or what she cannot do.

There are many mums and dads in a similar boat, I know will identify with this. So how do I stand up for my daughter? Well, let me give you an example.

Our friend’s four year old son came out bluntly the other day, “Brielle is silly.”

Now he didn’t say it with a smile or laugh, but really seriously and almost disapprovingly.

Brielle was scooting about the ground finding, and then flinging various toys at the time, in a group environment.

Maybe I read into it too much.

He is only four after all!

I pried for what he meant, and he repeated that she was silly.

I said, “You mean that she is a happy girl?”

The answer was no.

So mama bear mode kicked in.

I told him that we are all a bit silly.

That Brielle is a great girl, she’s a happy girl.

You see, what I interpreted he was trying to say, is that Brielle is different, she doesn’t act like a typical six year old, she doesn’t fit in with the other kids – she’s silly.

He wasn’t being mean, just expressing his thoughts.

So I gently stood up for my little girl in this instance, not wanting her to be singled out as being, ‘silly’, as she scooted about the floor with a huge smile on her face.

10 Things I am Glad my Son with Learning Difficulties Will Never Do

In fact he cannot speak at all. He cannot write any letters of the alphabet or any numbers and is not toilet trained.

He has significant learning difficulties as well as autism, a rare genetic condition called Neurofibromatosis type 1, and global delay.

There are so many things in life he will never get to experience or will only experience on a very basic level.

He is unlikely to ever be able to live independently and will never go to university or drive a car. It is unlikely he will be able to work a bank account, cook meals for himself or have a job.

He is not going to be sporty or be a great politician nor will he own a house or even be able to read a newspaper.

These are all things that sometimes get me down as his mum.

We all long for our children to experience the best that life has to offer. We want them to succeed and be happy.

We perhaps hope one day they may even bless us with grandchildren!

My little boy will never even be able to go on holiday himself.

But while these are all things I am sad he will miss out on there are other things about life that I am actually glad he will never understand or be part of.

These are the things that bring me comfort because his life is simple and uncomplicated.

His innocence is something more of us need to embrace.

1. He will not lie.

He has no capacity to understand what lying is and for me that is a wonderful blessing indeed.

2. He will never be jealous of what others have.

Isaac is engrossed in his own world. He has no idea when it is even his birthday or Christmas let alone what car someone else drives or whether they have better clothes.

He is content with whom he is and what he has and that is something that brings me great delight.

3. He will never say anything horrible to anyone, ever!

Words are so powerful. While my son is unable to speak in some ways that brings me happiness because too often people use the ability to speak to calm others names or say such horrible things.

I am proud to have a son that will never do that at any point in his life.

4. He will never understand wars, terrorism or hatred.

Current affairs are a total mystery to my son. He does not understand why people fight or death in any way.

In a world where sadly these things are more commonplace than anyone would like I know my son is sheltered from those things due to his level of understanding.

When I watch the news in tears at another incident I am so thankful that this part of life is something my son will never need to worry about.

5. He will never be racist.

People are people to my son. Colour is not something he is aware of, nor does he concern himself with your religion, politics, or sexual orientation.

He will sit on your knee and show you his iPad or lean against you regardless who you are in life.

I want to be much more like that too.

6. He will never be swayed by peer pressure. 

My son is very socially unaware. If everyone around him was smoking it would not occur to him that he was different.

As he enters his teenage years and other parents worry about the pressures this brings with society I have no fear of this.

While he may be gullible he will never be swayed by social pressure to conform and that is so refreshing to watch.

That is a huge blessing to me!

7. It is unlikely he will ever commit a crime.

My son will need carers with him all his life. He is naive and has limited understanding.

While he may not understand the concept that goods need payed for in shops or that there are speed limits because he will always have others looking out for him he will most likely never be arrested.

He won’t go around with a gun or knife and has no capacity to rape or mug anyone.

There is a whole aspect of crime that is way beyond his comprehension and as a parent I have no fear of the police arriving at my door because my son has been taking drugs or stolen someone’s car.

This is something I will always be so thankful for.

8. He will never be motivated by money.

Get rich quick schemes are not something I will ever have to worry about my son becoming embroiled in. He will never trample over others to get more money neither will he cheat others or be ruthless.

His total childlike innocence means he will be as thrilled with coppers as he would with millions.

Money has no meaning to him and while for many that is a sign of missing out for me it gives me reassurance that his motivation will always be pure and he will treat everyone the same.

We need more of that in life.

9. He will always find pleasure in the simplest of things.

I can easily imagine my son as an adult getting just as much excitement watching a lift door open and close as he does now at 8.

Christmas for him is about having mashed potato with his dinner much more than it is about presents.

The wrapping paper and packaging are much more fun than anything else. I cannot imagine him ever outgrowing toddler programmes or the simplicity of lying on a bed playing with his own feet!

10. He will never know what others think of him.

He will never know that society sees him as less than, of little value. He will never know that people make fun of him or ignore him.

He sees his own self-worth and walks with his head held high. I adore that about him.

He is who he is and he does not give a monkeys what others opinions are.

Many people have pitied my son or myself. Society sees people like my son as a negative thing but I don’t.

I look at my son and smile at his innocence and purity and I see an inner beauty that is never going to disappear. He is pure gold in a world tarnished by hatred and pride.

He is a treasure in a society full of pollution.

Yes there will always be good things my son with learning difficulties will miss out on but there are so many things he will never do that make me proud to be his mum.

I am so glad to have this wonderful boy as my son!

We’re all going on a…SUMMER HOL-I-DAY

You know… that really catchy and somewhat annoying summer holiday 1960’s classic by Cliff Richard – ‘We’re all going on a summer holiday’.

The one I just watched a group of adorable preschool dancers in their little swimsuits and shorts dance to at my daughter’s dance extravaganza…

Well, I looked up the words and here they are:


We’re all going on a summer holiday
No more working for a week or two.
Fun and laughter on our summer holiday,
No more worries for me or you,
For a week or two.

We’re going where the sun shines brightly
We’re going where the sea is blue.
We’ve all seen it on the movies,
Now let’s see if it’s true.

Everybody has a summer holiday
Doin’ things they always wanted to
So we’re going on a summer holiday,
To make our dreams come true
For me and you.
For me and you.


My family and I are getting SUPER excited for our upcoming trip to the States!

We have so many special people to visit, old and new places to see. Only one more week of school left for the girls!

My wise father-in-law reminded me though that it wasn’t going to be easy having all  four girls home for 2 months, ALL THE TIME.

Especially my youngest monkey who is six years old, and needs constant care and attention, and special help with all activities of daily living.

And travelling on a 10 hour transatlantic flight, in fact a short haul and then a transatlantic flight, when you may require oxygen, will need to monitored and need to be tube-fed, and not be able to understand why you are being restrained in a seat for hours on end, is not just fun when you’re an active six year old!

So whilst I agree with most of the sentiment of this song, no more working for a week or two, fun and laughter, and the sun shining brightly, there is ONE thing that is just about as far removed from reality as I can imagine….

No more worrries for me or you.


There is so much preparation, paperwork, packing, sorting out accommodation, organizing, that goes into planning for a summer trip!

And all of that work is infinity increased when you have a little one with complex or special needs- those of you who are in this same boat know exactly what I mean…

Yes- we can’t wait! But I will have to keep my cool and try not to be stressed by all the prep leading up to travelling.

It will be intense. It will be a lot of work.

But hopefully, the kids will stay healthy and we will all manage to unwind, relax and enjoy the sun, each other and good friends while we are away.

Hopefully the walker and wheelchair will make it to America in one piece!

Summer holidays are great, there is no doubt about that-  however a parent’s work is never done.

There will be plenty of worries and little stresses to deal with.

In fact, going away brings up a lot of them for those who have kids with complex needs. But that’s just our reality.

We get on with it, and look forward to making some incredible family summer holiday memories to last a lifetime.

The Love Behind Special Needs Adoption

While some parents go into adoption with a specific mind set or desires for how they’d wish to start or expand their family while others fall into adoption rather casually and sometimes by pure chance.

In some cases, prospective parents are already open to the idea of accepting a child into their family no matter what the race, gender or even health condition of the child is.

And sometimes the love and bonding of a child inspires adoption in foster to adopt situations.

Regardless, of how special needs adoption comes to be, the universal theme is love.

I had the opportunity to interview two families on their special needs adoption. Their candid responses to my question left me feeling in such awe.

As a special needs parent myself by way of a biological child, I was extremely interested in what led a set of parents to adopt a child with special needs, and in some cases with severe disabilities and challenges or even a shortened life expectancy.

Essentially, why would you say yes to raising a child that you knew would change the dynamic of your life so drastically?

Their responses were everything you’d hope for and more.

I asked Autumn Hernandez, Mom to a primarily typical daughter who is sixteen and a younger adopted daughter, what she perceived as her greatest joys and rewards from becoming and adopted parent to a child with special needs.

She replied, “Some of my greatest joys are seeing the improvements she makes and the milestones she hits.

Above all the greatest joy is the smile on her face when she hears momma.

To her I’m just mom there is no adoption or other mom it’s just mom.”

Likewise I asked the same question to Kelly Price, a mom that describes her “biological daughter as twice exceptional and her youngest having sensory issues.”

Kelly, didn’t seem to bat an eye at the idea of incorporating an additional child into the already existing challenges of special needs parenting.

I also asked Kelly the same question about what her greatest joys and rewards from special needs parenting were and she expressed; ” “Meh, I would say they are the same joys and rewards you get from raising any child.

She has grown and achieved so much beyond what the ‘experts’ thought possible.

Relationship dynamics after a child with special needs has been introduced into your circle of friends, close family and extended family have always been of particular interest to me.

I’ve found special needs parents of biological children often have a difficult time with family and friends after the birth or diagnosis of their child with special needs.

In many cases they express abandonment of their closest friends, withdrawal of support of family, and relationships that cease to exist over time.

However, the opposite seems to be true in cases where a family has adopted a child with special needs into the family.

Kelly stated that she found that her “family and friends accepted her very quickly and have been there for us throughout.”

Likewise, Autumn replied that while it perhaps changed some of her extended family dynamic, “but beyond that I don’t believe it has changed any other relationships or support/assistance.”

I asked both Kelly and Autumn if they felt that they were treated differently than those who have biological children with special needs.

And both wholeheartedly agreed that they do feel that they are treated differently.

Kelly states that people continually tell her that she is, “special to take that on” – she hates that.

Autumn told me much the same, that people tell and, “act as if my husband and I are saints for adopting her which I find extremely annoying because the fact is no matter her needs she’s just my baby girl and I don’t do anything any other parent wouldn’t do.”

Special needs adoption might not be for everyone, but for the families that decide that is where their life’s journey has led them to do, everything I felt and experienced with these two mother’s sharing their hearts with me, made me feel nothing but a whole world full of love.

To them it’s no different than a biological child that they gave birth to, perhaps just with some extra care and needs.

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!