Seeking the Truth About ‘Hidden’ Disabilities

Hidden: adjective kept out of sight; concealed. verb past of ‘hide’

We frequently encounter the term ‘hidden’ disabilities; it is in widespread use across the media, throughout society, within many of the various disability communities.

In general, most people have a view on what they think it means; they will refer to it as relating to disabilities that are deemed by society to be less ‘obvious’.

Often included in the list that is offered by way of explanation will be Autism, Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, or maybe some mental health conditions.

It seems to suit society to compartmentalise a whole range of disabilities, disorders, conditions or illnesses into two broad groups; those that are more obvious ‘visible’ disabilities (especially if there is the big clue of a wheelchair, a guide dog, or hearing aids) and the trickier to spot ‘hidden’ ones where there is no perceived visible clue.

I wonder, however, whether this is just lazy thinking developed to excuse people from taking the trouble to look a little harder or ask the right questions…

‘Hidden’ or ‘Overlooked’?

A so-called ‘hidden’ disability isn’t hidden to the person who has it. It will influence their life and perhaps the lives of their family and friends in a wide variety of ways.

In some cases, it will mean that the person concerned can and does, perhaps with some adaptions and strategies, live a relatively ‘normal’ life (not that there is a clear definition of what ‘normal’ is!)

In other cases, the person’s disability or condition will mean that they face many daily struggles and perhaps need a high level of care support to get through each day.

Society neatly places people either in the ‘visible’ box, with lots of support available, lots of TV advertising to encourage us to give towards guide dog appeals, or to help children who use a wheelchair (and, by-the-way, there is nothing wrong with any of that), or in the ‘hidden’ box, where there is much less support.

Autistic children, for example, are misunderstood to be ‘badly behaved’ if they are struggling to cope and have a meltdown, and society can ignore and overlook them and move on.

Dark overtones of the past

This societal approach of referring to ‘hidden’ disabilities, overlooking and ignoring the needs of many people with disabilities, conditions or illnesses, as a result, has dark overtones of the past.

It’s not that long ago that children with so-called ‘hidden’ disabilities were ‘hidden’ away in institutions, facing unimaginable horrors and often not surviving into adulthood. Parents were told to forget about them and to ‘try again’.

These institutions still exist in many parts of the world and are a disgraceful stain on our global society. That they are in any way making a comeback in the UK under the guise of ‘secure mental health units’ is grievous, not least because many of the children, young people, and adults in them are misdiagnosed.

Older generations in this country grew up at a time when these institutions were commonplace in the UK, and consequently didn’t see many children with disabilities, often didn’t gain the knowledge and understanding about disability that later generations gained by being at school with a diverse range of children.

The term ‘hidden’ disabilities might suit many as a convenient way of explaining their ignorance, but is it a term that is toxic because of the past?

‘Disabilities’? ‘Differences’? or ‘Diversity’?

Many who have what society might term a ‘hidden disability’ would strongly argue that theirs is not a disability at all. Some autistic communities, for example, will often refer to ‘difference’ or ‘diversity’ rather than ‘disability’.

We’ve seen a change in the terms used by professionals regarding Autism too, from Autism Spectrum Disorder to Autism Spectrum Condition, to increase the use of the descriptive term Neuro-Diversity.

Whatever term people choose to use for their difference, as a society we all have a responsibility to understand, adapt to, and more than anything celebrate the widely diverse human family that we are all a part of.

Why would we refer to anyone as ‘hidden’?

‘Hide’ or ‘Seek’?

It’s true, of course, that because that understanding, adaption, and celebration aren’t commonplace in society, to put it mildly, many people with differences and diversities themselves ‘hide’ them.

It’s not that long ago that most people understood that being autistic, for example, was an almost entirely male difference.

We now know better, knowing that females are just as likely to be autistic but are generally more accomplished at ‘hiding’ their differences by copying their peers, for example.

By why should they feel that they have to? Yes, of course, most children and young people want to ‘fit in’, to be like their peers but is this because we as a society have set such a high stock in being ‘normal’ (whatever that is!)

From birth, there are targets to attain, standards to meet, markers to reach… it’s relentless.

Is it time for us to instead of chasing these ‘normal’ checkpoints, to seek and celebrate the differences and diversity in our children; to encourage each other to wonder at the amazing human species that we are a part of in all of its variety?

Let’s not keep ‘hidden’ anymore, let’s be visible, conspicuous, and celebrated!

For the Love of Siblings

When you have your first child, nothing matters more than spending every waking moment with them.

New parents dote on their firstborn in a way unparalleled, making even the most mundane of tasks memorable and full of love.

It is an enviable relationship in many ways.

With every subsequent child born, parents’ time and attention is divided, making one-on-one activities difficult, if not impossible.

There are needs that demand an immediate response, and guilt that you’re spending too much or too little time with your other children can creep in.

But if you thought it was emotionally precarious before, the birth of a child with special needs will surprise you with how challenging it becomes to make each of your children feel as, well, special.

Speaking as a mother of four – three daughters and one son with cerebral palsy – I’d like to offer some solutions that have worked for my children in this regard.

Hopefully you find something here that helps you and your family.

My number one suggestion is to take advantage of respite care in your community.

I can’t say enough positive things about respite care! It’s great for your special needs child because they can play in a safe environment with peers who face similar challenges.

This shows the kids that they are not alone in their differences from neurotypical kids.

For the rest of your family, it allows you the freedom to go places without making special accommodations (which of course we are all willing to do but to have a break from is welcome).

Make everyday outings more meaningful.

Museums, parks, and community events are great, though not always accessible. But you can frequent the places you know work for all your kids, and turn those places into something special.

For example, we love our public library; all the kids’ rooms are on the same floor, there are elevators and accessible bathrooms, free activities and touch screen computers.

Before we go, I talk up the trip, asking them what subjects of books they might want to check out, encourage them to see what the craft table has to offer, and so on.

As a result, my kids all love the library and think of it as a fun place to visit.

Make home time more meaningful, too.

Have you ever read a chapter book aloud to your child?

Or sat down and colored in a beautiful coloring book with them?

How about watching a funny show together, one that’s on after the “little kids” go to bed?

These seem like small things, but to the sibling of a special needs child, the attention you’re giving them is worth its weight in gold.

If you can’t take them somewhere, at least you can hug them.

We can’t always do special outings, and that’s OK.

Don’t underestimate the power of a long hug, singing a favorite song together, or simply asking them about what they are interested in right now.

Kids love to feel they’ve got your undivided attention, so give it to them a little bit each day if you can.

And don’t forget the verbal praise! An encouraging word goes a long way in putting a contented smile on my kids’ faces.

Take advantage of those who offer help.

Relatives in town? Friend offers to babysit? Take them up on the offer if you know your child will be cooperative.

I understand not all special needs children can be flexible in their routines, but if an occasion to spend time with their siblings is offered, try to take advantage of it.

You will find out who your friends are when your family’s needs start piling up; these true friends really do want to help, so let them!

In all you do, be intentional and follow through.

Did you say you’d take them to a movie? Or that they could have a sleepover and you would chaperone? Then don’t flake on your promise.

Is it a busy week and you don’t have spare time for special sibling time? Then don’t tell them you might!

It’s OK to say “we’ll do that another time soon.” It’s not OK to say you will, then cancel at the last minute.

If you want your kids to resent you (or their special needs sibling), that’s the way to accomplish it, and quickly.

We’ve incorporated each of these methods into our routine and, for the most part, we’ve found success with each sibling feeling unique, valued, and, especially, loved.

I hope you and all your children can use these or find other ways to enjoy each others’ company every day.

When the Time Comes for a Wheelchair Van

When the time comes for most people to purchase a new vehicle, it isn’t considered a pivotal, life-defining moment. For some of us, that’s EXACTLY what it becomes.

When my husband and I recently began shopping for a new vehicle, we were down to one reliable car that was already nine years old.

Our other car was sixteen years old when it finally gave out on us; it had a good run.

Desperately in need of a second car, we had to make our move.

However, this time around, we knew that our quest for transportation was going to be more in-depth; it would prove to be a stressful, profound process.

We had so much to consider and a plethora of strict guidelines laid out.

We were not in search of amenities and luxuries like heated seats or fancy controls.

Our “must-haves” didn’t include a sunroof, a navigation system or premium leather upholstery.  Our hearts were not set on any particular color choice.

Those traits meant nothing to us… we needed life-changing conveniences.

You never envision yourself at 40 years old in the market for a vehicle with these features: an in-floor wheelchair ramp and a lowered floor conversion.

You don’t dream of the day you’ll buy a car with four-point tie-down straps and removable seats.

With “brand new” being ridiculously out of our price range, we required something dependable with very low mileage.  Those were all hot items on our list of NEEDS.

As our growing, eight-year-old daughter is in a wheelchair, choosing a small coupe or sedan would be completely far-fetched.

Breaking down a wheelchair into two HEAVY pieces, a seat, and frame, to cram into a car several times daily was causing serious wear and tear… not only to her chair but to my back as well.

We could delay the inevitable no longer.  We needed a wheelchair van.

It’s a daunting task to make this drastic move.  For weeks, we talked to other parents, logged hours of research, and anxiously tried to figure out how we could afford it.

There are multitudes of options out there.  Is it best to purchase and modify an existing van, or is it more cost-effective and advantageous to purchase an already converted vehicle?

As parents of a child with multiple disabilities, we were never offered a handbook to guide us through this, or any other part of our journey.

After weeks of nervous deliberation, we purchased our beautiful, gently used wheelchair van!

We had been unsure of what the right move was, until the very first time I rolled my daughter up the manual ramp and gracefully secured her chair to the floor.

Realizing I could close the door and have a huge area for diaper changes was incredible!

I knew how much easier life would be from that moment forward… for her and for us.

There would be no more breaking down, lifting, transferring or struggling to get her in and out of a car, ever again.

I felt a tiny twinge of sadness when I realized that there was no going back…there would be no more small cars in my future.

However, that sadness swiftly melted away when I mastered backing it into parking spaces and feeling the freedom of maneuvering my child in and out, in mere seconds.

I’ve learned that going from driving a compact car to a big, powerful tank of a vehicle is just another step forward in our life’s adventure!

This was a proactive move to ensure we have everything in place to meet our child’s needs, and we were thrilled to have it!

The one “typical”, imperative feature was a CD player; our fourteen-year-old son is a music lover.

All he cared about was being able to play his CDs by “The Smiths” and “The Clash” as we drove.

He got it and the day-to-day experience of travel has been significantly enhanced for our entire family.

Premature Babies Aren’t Cute

Before you jump on me and tell me that they are, of course they are – all babies are cute! But the meaning behind the title of this blog is about so much more.

As a preemie parent, how often have you heard “oh I wish my baby was this tiny!! How cute!?” Or “you’re so lucky that you got to spend extra time with your baby”


Only when you have a child born earlier than they were supposed to come will you understand how frustrating it is to hear that and how upsetting it is when you read about people trying to bring labour on early.

Here are a few facts about having a premature baby that you may not realise if you haven’t given birth early.

Did you know that you probably won’t hold your baby straight away?

You might not even see them!

When my son was born, I genuinely didn’t even know if he was ok, he didn’t cry when he came out and was whisked very quickly away by a lot of people trying to save his life.

It wasn’t until he was about 6/7 hours old that I actually got a glimpse of him in that incubator and it was SIX days before I got a cuddle.

To see your newborn baby with wires everywhere and breathing equipment is the most scary thing and then leaving the hospital on your own to a silent home is something I can’t even explain, you hear stories of people being up all night with their crying baby wanting a rest and all you can think is how jealous you are of that, you would do anything to have your little baby home.

There are SO many risks and complications from having a premature baby too, it’s usually only the good stories that you hear!

But the reality is that a lot of premature babies face a lot of difficulties even after they have left the hospital.

They are so much more vulnerable for at least the first year of their life so what you might just think is a little cold could actually put a preemie back in hospital!

So, having a premature baby isn’t “cute” it’s actually terrifying and my heart goes out to all the parents who have had to go through that journey.

Inclusion in the Mainstream Can Work

Six years ago this week a letter was pushed through my letterbox. That letter determined my child’s educational future and one single word stood out: mainstream.

I wasn’t sure what to think if I am honest. I was worried, excited, nervous and a little surprised.  I had registered my child, as was expected, at my local school the year before.

I knew she wasn’t ready for school and she was on the pathway to being diagnosed with autism so I applied for a years deferral.

That was granted but the nursery also put her name forward to what is known in my area as ‘the forum.’

This is where a group of ‘professionals’ from Head Teachers, Educational Psychologists,  and various managers meet to discuss each child whose name has been put forward to match school placements with the needs of the children.

Every year, without fail, more names are put forward than places available and the first batch taken are those whose needs appear to be manageable (on paper) within a mainstream setting.

There is a current thinking of ‘presume mainstream’ and ‘inclusion’ which has resulted in unprecedented amounts of children with additional support needs attending local mainstream schools.

I was left wondering if my daughter was a casualty of this latest movement or whether mainstream was, in fact, the right setting for her.

Failing any additional evidence to prove mainstream may not be right I was encouraged to put my reservations to one side and ‘give it a go.’

I hesitantly bought my daughter uniform and took her to transition days at the local school. That August she started mainstream and I hoped and prayed, for her sake, that it would work.

Tonight I am just home from her parents evening having now been at that mainstream for five years. She is not only surviving there, she is thriving there!

I just wanted to write this to prove that the inclusion of disabled children in mainstream can work and that my daughter is proof of this.

In the five years she has been there she has had further diagnosis including anxiety, an eating disorder, and, most recently, motor difficulties.

Her care needs are high and she has, at times, struggled, but she has been supported, encouraged and become more resistant as the years have gone on.

Every year I hear how not only is my daughter doing well in the class but how the class are adapting and looking out for her, everything from holding doors open for her because they know she hasn’t got the strength to open them, to taking turns going early for lunch with her because she can’t cope with a busy and noisy lunch hall.

Others ask to borrow her pencils as she prides herself on having a sharp pencil ready daily for every child in the class and one particular girl has become my daughter’s voice as Naomi has selective mutism and is unable to speak to the teacher.

She has, however, become confident speaking to one child and this girl then relays my daughter’s request to the teacher.

Inclusion has allowed my daughter to have friends who live near her and be included in the community she lives in.

Inclusion has allowed my daughter the exact same opportunities as her peers and created an attitude of ‘can do’ in her class and school.

Inclusion has given my daughter an acceptance within her own community. She’s wanted, loved and known.

Inclusion has benefitted her school as staff have become more confident dealing with a child with complex needs, had further training to increase their knowledge, and discovered new ways to adapt the curriculum for everyone.

Inclusion has benefited every child in my daughters class as they have learned that disability isn’t something to fear or mock but a real child who they can play and learn with.

It’s been beautiful to watch.

So to anyone finding out that their child with additional needs has a mainstream place:  please don’t panic.

You will hear so many stories from people about how it hasn’t worked for them or how it’s just ‘cutbacks’ or ‘bad luck’ but what you don’t seem to hear are the thousands of stories of people, like my daughter, who are thriving in supportive and wonderful mainstream schools.

Here’s my daughter taking part in a class assembly last week. She loved it and I’m so glad that six years ago that letter had that simple word: mainstream.

Review: Flying with the GoTo Seat

Review by Sophie Biddlecombe from the 4 Suitcases and a Wheelchair blog

As a family, we travelled to Italy last summer and booked our flights through EasyJet. This was our first flight with our daughter Millie, who has Quadriplegic Cerebral Palsy.

Initially, we thought we would need to take Millie’s big, bulky car seat on board the flight to enable her to travel.

After speaking to EasyJet’s Special Assistance however, we learned that they were happy for the GoTo seat to be used on the aircraft.

Now with the knowledge we could use Millie’s GoTo seat on board our flight, it suddenly made the whole experience feel less daunting and all the more accessible to us.

It certainly put our minds at rest that she would be secured safely and she would be comfortable in her own seat.

We now no longer faced the headache of trying to figure out how her car seat was going to fit.

EasyJet were not only very happy for us to use the GoTo seat, but they were also happy for us to take anything Millie needed to make our journey as comfortable as possible.

The GoTo seat is so light, once we had checked in we could easily rest the seat on the back of Millie’s wheelchair, to transport it to the aircraft.

We used an Ambulift to get us to the aircraft door where we left Millie’s wheelchair behind.

Needing to carry Millie and all our hand luggage, we were also easily able to manage the GoTo seat as, being so light it was easy to pop on to an arm, leaving a hand free for a bag!

Fixing the GoTo seat on Millie’s aircraft seat was so easy, it was really no different to attaching it to any other chair and believe me, we have tried chairs of all shapes and sizes!

The cabin crew were on hand to help us guide the straps through the seat and around the tray table behind.

Millie has low tone in her trunk, so her posture is not completely perfect in her GoTo seat but she loves her seat and was happy being in the familiarity of her own seat, whilst embarking on her brand new air travel adventure!

The GoTo seat enabled Millie to access and have a very normal family experience.

On our two-hour flight, Millie enjoyed peeking out the windows watching the clouds float by, munch away on snacks and watch her favourite television programmes on her tablet, just like her big brother, and any other three-year-old for that matter!

Flying to Italy was our first experience using the GoTo seat on board an aircraft but over the past two years, we have used the GoTo seat in everyday life.

In shopping trollies (if our much loved GoTo Shop trolley is not available), on swings, Go-carts, Little Tikes cars, trikes, and of course chairs of all shapes and sizes.

With the floor sitter attachment, Millie is often found in her GoTo seat in her bedroom playing, at friend’s houses, in the park for picnics, on the beach, on a tractor-trailer ride… you name it she has pretty much been there and done it!

It is also crucial equipment for everyday tasks such as hair drying!

The GoTo seat is so useful and keeps Millie as involved in everything as possible, we wouldn’t want to be without ours and can’t wait to take it on more travelling adventures.

A Puppy Kind of Love

Before we ever decided to have a child, we first decided to have a puppy. That puppy would grow to be 6 years old by the time our daughter was born. He was spoiled beyond any scale of necessity.

We rarely went places that he did not accompany us. And if we did, he got some type of treat when we returned. Although he was 60 pounds, he was still a lap dog most of the time and loved to cuddle.

He got all the attention all of the time.

And he was our first experience at caring for and keeping alive something other than ourselves.

Fast forward to my pregnancy and things started to change. He was no longer allowed in the bed with us because I was miserable and couldn’t sleep.

Then after her birth, our lives changed even more. We didn’t just spend the three nights in the hospital away from him initially after she was born, which really threw him for a loop.

When she was two weeks old, we started our month long stay at Children’s hospital. He stayed with my sister who he loved dearly.

But I know he must have felt like we had abandoned him completely.

Over that time span, I think I only came home and saw him once or twice.

Once we finally came home, I don’t think he really knew how to act. He was glad to see us. But at the same time, we had left him.

On top of that, there was a new person in the home that seemed to take all the attention.

And admittedly, we were just zombies for a while, going through the motions of living because we didn’t know what we were doing anymore.

Our home felt like a revolving door at times with all the different therapies our daughter was receiving.

And he didn’t know what to do with that either. He didn’t understand why someone would be coming over and not want to see him.

He never really bonded with our daughter, and to this day ignores her for the most part.

He’s not mean to her. He just tends to act like she isn’t there. Occasionally, he will let her pet him, but only for a short period of time and only when it is his idea.

I know this article is a bit off the beaten path, but I write just to show how special needs affects so much in the family life.

It affects the parents of course, and the siblings if there are any. It affects how the extended family and friends who are like family interact with you.

Some say nothing because they don’t know what to say.

Others over include because they don’t want you to think for one second that they are treating you different (even though you are obviously different).

It also changes the family dynamic in the best ways too. It makes families grow and exposes families to things they would otherwise never really know about.

It makes people more compassionate and patient. It makes people check their own lives sometimes and make adjustments.

But it also affects the family pets. They are usually the most loyal, but often times the last thought of.

As our puppy is approaching 11 this year, and our daughter is approaching 4, we have come a long way in this special needs parenting journey.

We are learning that no matter how hard it is, at times we have to take moments for ourselves. And we are also working on paying our first baby, our puppy, more attention these days.

He was our first experience with loving and caring for something day in and day out, other than each other.

He’s laid at the foot of our bed through the hard nights and been a should to cry on when the tears came.

Even though our daughter isn’t his favorite person, he still gets up with us at night if she is sick or cries out.

He’s celebrated the high points with us even if he didn’t understand what we were celebrating. And he is a constant source of comfort when we need it.

We were lucky to have him first, as he has been a big part of this journey for us. And our daughter is slowly starting to grow on him some.

I write this article mainly to say that if you have a pet the feels more like a person in your family, stop and show them a little extra love today.

They are a much bigger part of this journey than we tend to give them credit for. And occasionally we need to recognize them for that.

Health Service Sexism – A Father’s Power of Invisibility

After a few weeks in the main hospital, Lydia has been well enough to be transferred to our local hospital where some nights we can have our community carers to come and sit with her overnight while we go home and sleep.

This happened last weekend and we were home for all of 2 and a half hours before the Registrar, nurse and carer weren’t coping with her needs and we were called back in at 1am.

The evening on the weekend isn’t great in here as there are no consultants around and the Reg isn’t quite up to making the required calls.

They’re very nervous about her.

As we arrive, we are out of the cubical and in high dependency with everybody at panic stations.

The room is full of anaesthetists, physios, registrars and nurses (all female) but Lydia is all settled – she basically had some secretions move in her chest and block her breathing, it’s not worth a panic, you just get it moved out with movement and suction.

Hi Mum

We are given a breakdown of the situation as we arrive, then they ask my wife questions and hang on every word she says – as they should, she is absolutely awesome at what she does.

However, anything I add seems to blow away with the wind as their gaze returns to my wife or something else before I even finish my sentence. Maybe its all in my head

So, what do you think has happened Mum? Why would she have done what she’s done tonight? – that’s ok, she is a good person to ask.

We both agreed anyway, she needed more physio input than she’s getting, something we said previously but had been ignored.

So, a discussion begins about the physio input and they’re all asking my wife again.

Like any good team, my wife and I tend to have more expertise in different areas and physio is usually my area mainly so as all the questions are given to my wife, she turns to me and asks what do you think regarding what we should do about physiotherapy?

I had barely finished speaking about what we should do over the next few hours before the lady anaesthetist chimed in with “WELL MUM KNOWS BEST WHEN IT COMES TO PHYSIO”!

I look at her thinking…. Have you just been through a tough divorce or something? Is there something about the male opinion that is made null and void by testosterone? – it’s not the main issue right now so I try to ignore it.

In comes the consultant

She has been called in from home to see Lydia too and gets an update from the other professionals and seems to see that there was a bit more of a panic than was required too.

She eventually came over, squatted down looking directly at my wife and completely away from me despite being sat next to her. She asks the same question, so Mum, what do you think happened?

I’m starting to get the picture now.

They don’t seem to recognise what they’re doing despite the fact my wife is almost constantly rebounding their questions toward me as she values my input but again, each time I speak I get a polite glance as I say something but once I’m finished it’s as though I disappeared again and what I said was spoken in Cantonese.

This is something many fathers have told me about and some even stay away from the wards because they can’t cope with being ignored by the professionals when they’re in the hospital while they hang on the Mothers every word.

Those men who are no longer in a relationship with the mother often cease to even be treated like the child’s father – It all leads to asking; why do many health professionals look at Fathers in this way?

Dads not around

Maybe that’s the first excuse that comes to mind – most Dads work and aren’t as involved, etc, so Mum is the go-to person.

To be fair, many of the nurses and doctors know us well and they know just how involved, trained and capable I am as well as my wife and so they pay attention to what we both say and the people I mentioned above were new to us.

So, the first problem is, don’t assume, the Dad may be just as involved as Mum like I am.

The other issue is that even if Dad does work and isn’t involved as much – he is a caring parent and he still knows the child better than you do.

He is still an expert and he is the one that will give his time, sweat, blood, bone marrow or vital organs for the child.

He’ll run through brick walls and turn into the Dad from Taken if anybody tries to harm them.

That’s why he goes to work in the first place…. Because he cares – don’t treat him like a nobody.

This experience of being called out of bed at 1 am, rushing into the car and racing down to the hospital all to be treated as though I wasn’t in the room reminded me of what it was like when we were first in the hospitals and I had that invisible cloak.

Don’t ignore Dad, he knows his children in a way that nobody else does or ever will, that’s why a Mum and a Dad are always needed to produce them -God’s design for the perfect team!

Dear 16 Year Old Me

This year I will turn 32 years old; 16 years ago I was sitting exams and wondering what my future would look like.

Life has changed so much since then and much of what I thought my life would look like has changed drastically.

If I could go back and give the 16-year-old me some advice to prepare for what my life is like now, here’s some of what I would say:

Dear 16 year old me,

I know right now you’re feeling the pressure of exams, you’re trying to choose what to study, you’re looking at university brochures thinking that this decision will determine your whole future.

Well, I want to tell you not to stress, your exam results won’t define you.

You don’t have to worry about the future, you are going to find your purpose in life and you are going to learn more from everyday life than any university can teach you.

That boy you have a crush on right now is going to be the boy you marry. Love him with all your heart, be kind to him and learn to forgive quickly.

That boy is going to become your best friend, he will be your rock and you will become a strong team.

Together you are going to face many challenges, there will be hard times and you will need each other. Keep laughing together and don’t forget who the two of you are.

You think it’s important right now to “fit in”, you care a lot about what people think and you worry about people judging you.

Please don’t waste time worrying about these things – learn that it’s okay to be different, your whole life is going to become different from the normal and you’ll need to learn to deal with stares, questions, and judgments.

Keep your head held high and smile through it all.

The words autism and spinal muscular atrophy are words that will sound scary when you first hear them but I want you to know it’s okay to be scared, it will push you out of your comfort zone and help you become the person you were designed to be.

Listen when I say you are stronger than you think, you are braver than you know and you are going to be able to deal with everything life throws at you.

There will be times when you are pushed to your limits, times when you feel like running away but stay strong – you can do this.

Keep your sense of humour, you’re going to need it, remember to laugh often.

Hold onto that faith you have now – you are going to see miracles. On the difficult days remember bedtime will come and a new day will start, on the good days be thankful and content.

There’s one last thing – Be kind to yourself, take time out for you and don’t be too hard on yourself. Remember who you are and remember that girl is pretty awesome.

Follow your heart always – you’ve got this!

Love the 32 year old you x