Dear Teacher

He has a clean nappy on and has been fed. I cannot tell you how grateful I am for these things. He is so precious to me and I hope he is precious to you too.

The problem is this: we lose six hours a day, thirty hours a week in fact, and we have no means of understanding what has happened during those hours.

Do you have a partner or children? If you do you will understand why I am interested in my son’s day.

I want to hear about his friends, about what he has been learning and even what he had for dinner that day. Love means I care about everything about him; all the details and the so-called ‘insignificant’ events.

I care about the silly stuff like how he laughed at something in assembly or how he got to take a message to the school office.

There is one big problem with all this: he cannot tell me ANYTHING.

He cannot tell me if his taxi got caught in traffic and he was late, he cannot tell me if he tried to hand his coat up himself and missed, he cannot tell me that you had a lesson outside today because it was a sunny day.

So I need you. I need you more than I ever imagined. I rely on you for everything.

I want to know as much as you can tell me about the six missing hours each day. Did my child fall and hurt himself, did he get excited about anything, and did he keep his clothes on today?

Nothing is too much to know when your child is nonverbal.

I understand you are busy. Truly I do. I understand my son is not the only child in your care and your time is precious.

I know the limitation on you and the pressures you have.

But I need you. My child needs you. Those ‘missing hours’ are so vital to us.

You see I could be out somewhere and my son hears something and gets distressed.

While I search frantically through my mind trying to work out what, I know sadly that it could be related to those missing hours where he is not with me and I will never know if what he has heard is connected to something which happened while in school.

We could be in a shop and he gets so excited and animated over a picture of something and I just know it is somehow related to school but have no idea why.

The lack of information causes us both to be so frustrated.

He wants desperately to tell me about something and he can’t. I long to connect with him and understand what he wants to share but I can’t.

Sometimes we both cry about this.

So please teacher, don’t write in my child’s diary that he has had a ‘good day today’ or that ‘can we have more wipes please?’ You could tick a box for those things!

Please tell me what made my child smile, who he interacted with, where he played at play time, what he actually did in PE and what you sang in assembly today.

Believe me, you will not bore me. I want to know so much.

In return I promise to fill in the ‘missing hours’ for you. What would help you?

I can tell you whether he ate well, or slept well but would you like to know that he loves the swing in the park, that he gave me a cuddle unprompted, that he touched his sister in a kind way?

I can tell you what he likes watching on you tube and what we do at the weekend. I can send photos, write to you and email you. Whatever would help you.

We need to work together.

Please tell me more.

I am a parent of a nonverbal child and I need much more in his diary.

Thank you,

A grateful but frustrated parent of a nonverbal 8 year old.

Being a Working Mum

It ain’t easy being a working mum, especially when your child has complex health issues.

Frequent absences from work, having to dash off to attend to the latest crisis or hospital appointment and appalling timekeeping due to seizures hitting as we’re leaving the house etc., all make working-life positively miserable. And unsustainable.

Up to 18 months ago, both J and I were seriously struggling.

As a family we had reached crunch time; we were both exhausted juggling jobs, worry and caring for a very poorly little chap.

The fast-approaching inevitability was that one or both of us would lose our jobs as we were absent so often.

In the end, it was an easy decision to make.

The answer was obvious to us both; as I earned more in my job and had better promotion prospects, I would continue working full-time while J would quit work and become a stay at home parent.

To anyone else in the same position, allow me to say that this has been the best decision we have ever made for our family.

It took time for us to get into the swing of the new regimen, many lists were left for Him Indoors so he knew what to get out of the freezer for dinner, what laundry had to be washed most urgently and when other housework-type jobs needed doing.

But gradually, the family dynamic shifted…

Daddy looked far less exhausted at the end of the day, Sam was happier and more relaxed, and when I get home from work I know I don’t have to immediately get on with housework etc… instead, I can read to my little chap, or we can play together for a while before his bedtime.

It works, beautifully.

Initially we were worried about how we’d manage financially; my salary alone is too much for us to qualify for any tax credits/benefits, which also means we aren’t eligible for support from a number of charities who supply equipment, etc.

The first few months were the worst – every penny spent was noted down, every bill paid, and so on. And gradually, we found our feet.

Now it doesn’t feel like we’ve ever known a different way of life – J is a house-proud Dad who delights in getting jobs done before Sam and I get home.

Sam loves having time with Daddy, in the couple of hours between him getting in from school and me getting home from work, they play and Sam’s therapies get done… it has been good for all of us.

My one regret is that we pushed ourselves to breaking point, we should have done this far sooner!

3 Things I Would Tell My Past Self – If I Could

The staff whisking me into theatre for an emergency c section, my baby being taken to special care, the doctors telling us he had brain damage, being moved to other hospitals, different wards and eventually being discharged.

Thinking the worst was over only for it to all start again when we met different doctors, were given different diagnosis, different opinions from multiple therapists who gave us different predictions for the future.

William is now 8 and life has settled down a lot, or maybe it’s just become our normal?  I’m not really sure?

But I often think back to day one and all the days after that which led me to where I am now and wonder if there is anything I would tell myself as reassurance or advice if I could go back in time.

Is there anything I wish I had known back then that would have made the first months or years easier?

And yes there are a few things I would tell myself and maybe they will help you or someone you know who is at the beginning of the roller coaster ride that you find yourself on when your baby is born with a disability:

1) The doctors and professionals aren’t always right.  They have no crystal ball and they can’t tell the future.

We were told so many different things by different professionals and while some of them have been correct, many weren’t.

We were told that our baby’s vision was so impaired he “wouldn’t be able to tell the difference between us and a stranger”, those were the heart breaking words we were given by a doctor who specialises in sight at Great Ormond Street Hospital.

We were devastated as you can imagine.

But William was under 1 then, he’d suffered a traumatic birth injury and his brain hadn’t fully developed so we were hopeful that the doctor was wrong.  And he was.

William does have visual impairment and wears glasses to help, but he can see a lot, he recognises people and loves to look at books and watch the TV.

We were told he wouldn’t be able to understand us, but he understands more than anyone gives him credit for and we often catch him laughing at a joke on The Simpsons or listening to the latest gossip and laughing at something funny.

We were advised not to bother with certain therapies as they wouldn’t help, luckily we ignored them and they certainly did help!

So, I would certainly tell myself, and anyone else at the beginning of their ‘journey’ that you should listen to the professionals, but take their predictions and advice with a pinch of salt.

You know your child better than any of them do, you know what they are capable of and what they can or cannot do, you know when to push therapies or try new things and when to stop if it’s not working.

You are the decision maker as far as your child goes, so stand up to them if you disagree.

2) Surround yourself with people who ‘get it’.

I was lucky, I met a couple of other Mums with disabled children when William was quite little but it wasn’t soon enough really.

It’s only when you find families going through similar experiences as you are that you realise how much you need them.

I had plenty of friends when William was born and they were amazing and really supportive but try as they might, they didn’t really ‘get it’ and it’s very difficult to know how much information they really want to hear, you find yourself telling friends “he’s fine” when they ask because you don’t want the conversation to simply be about your life and your problems.

Trouble is they then think he is fine, as I found out when one friend told me they were so glad to hear William was better now!

Over the years, I have ‘gathered’ a nice circle of friends who have children with a variety of disabilities or medical conditions, we support each other and talk about our kids, therapies, medications etc, we offer advice when it’s asked for and shut up when it’s not, we get it.

I call them the SuperMums!

But we don’t just talk about our kids!

These friends are friends for life because although our kids were the reason we met, we are now real friends, friends who go to concerts together, go on holidays together, meet for coffee, get drunk occasionally and know we can rant to each other when we need to.

Our husbands know each other, we go to the same groups, our kids go to school together, we support each other when one of us ends up in hospital with our child.

We have shared and supported each through births, deaths, engagements, weddings, divorce, heartbreak and romance.

We’ve been there for each other no matter what time of day or night when we were dealing with seizures or sickness, we’ve supported each other through hospital stays and diagnosis and we’ve shared our delights and excitement when our children have done something new, no matter how small.

If I could go back to the start, I’d tell myself to find these people sooner.

I’d ask my paediatrician, therapists or health visitor to introduce me to other families in my area.

I’d also find some Facebook groups to get support from on a national scale, I know I’d also find local people from them too and as much as I know I would hate it I would make myself get out and go to a support group.

I know now that I would have been welcomed with open arms by families who get it if I had done.

3) Accept that life isn’t what you were expecting but that it doesn’t really matter. 

I spent far too long wishing things were different.

Comparing my life to my friends, comparing William to their babies and wondering why this happened to us.

Then I realised that it didn’t happen to ‘us’, it happened to him and I needed to be the best Mum I could be to help him to get through his life and enjoy it as much as possible.

Being envious of other people’s situations is depressing and draining and having a disabled child is tiring enough without adding that!

I’d tell myself that life may not be what I expected but it will still be brilliant, as hard as that may seem at the beginning.

I’d love to tell myself that it doesn’t really matter that William isn’t like other children because he wouldn’t have been like everyone else anyway, he would have been William regardless.

I’d love to tell myself that I’ll be grateful when he’s bigger and I see friends posting photos of themselves in the rain watching a football match when I’m snuggled up in the warm on the sofa having cuddles.

I’d tell myself to be grateful that I won’t have to deal with tantrums & I won’t be subjected to kid’s TV programmes.

I’d tell myself that if I look really hard there really will be some silver linings however dark the cloud may seem right now.

Beauty and Cruelty: Sharing Bad News with the Special Needs Child

Now living on the edge of the Peak District it is our nearest city. We visit often.

London was the backdrop to my teenage adventures. Manchester is my teen’s playground.

Affleck’s Palace and China Town, The Galleries and the Northern Quarter. Gigs held in a variety of venues, big and small, make the short train journey frequent and worthwhile.

Then the unthinkable happened. May 22nd – a terrible day.

Children the same age as mine, went to a gig in Manchester and did not come home. Others saw things that time will not erase from the memory.

We all felt the fear. We’ve talked, we’ve hugged, we’ve raged.

The news is full of stories, with Psychologist input, about how to talk to your children about this dark event.

What if your young person has a learning difficulty?

Pearl, my youngest, is 10, she is non-verbal and uses a communication book to make her needs known. She has Learning Difficulties.

Pearl’s understanding is pretty good, but because she can’t speak it’s hard to know quite at what level she takes things in. Her ability to pick up on moods, however, is superhoned.

Replacing the news with Go Jetters on Tuesday morning was pretty easy, but we were all talking about the bombing, as was her taxi driver who has the local radio on.

How much could Pearl understand?

What should I do? I think of Pearl’s life. She is cocooned from worry.

Attending a Special School she always has an adult near at hand. She always will.

Pearl does not know that bad people exist. When friends or family have died I do not know how much she comprehends.

So how do I explain something so utterly beyond my comprehension, as this attack, to my beautiful girl? Should I even try?

My girl understands kindness and unkindness. She knows love, but seems unaware of hate.

I want to keep her enfolded in this world of peace, but I want her to be prepared for what life may bring.

I do not want her to half understand, be confused, worried or fearful.

So I tell her.

“Something very horrible happened in Manchester. A bad man has made a bomb and killed people. It is very sad and dreadful. We are all very sad.

Lots of people have been kind and cared for and helped each other”

And I leave it there.

Does she understand? I’m not sure.

Do I? I don’t want to, I do not want it to be true.

I hope she feels safe and learns that the world is full of beauty and love and that with support pain can be endured, love wins over hate.

I hope we all know that.


That you’ve got to shoulder the weight on your own, because if you don’t, it just won’t happen?

Or maybe you feel that you’re the only one with the right blend of skills, knowledge and understanding to be able to do it all?

All of this can be especially true for those of us that parent a child or young person with additional needs…

I know I’ve felt like that on many occasions and I’m sure you have too… but sometimes, like today, I’m reminded that we are designed to work better as a team, and that when we work collaboratively together we can achieve much more than we ever can on our own.

Our son James, who has Autism and associated learning difficulties, has been going through a difficult time with transitions lately; particularly the one from home to school.

He enjoys school, especially any activity involving food (as you’ll see) but he has been struggling with the morning transition from home to the school transport.

Ever since he started school, James has been picked up from home by the school mini-bus and has always enjoyed the ride… until recently…

After the Easter holidays, he started refusing to go in on the mini-bus and most days since then has needed to be taken to school by car (a logistical work nightmare, but that’s for another day!)

It’s during this time that I have been reminded of the value of teamwork…

Without teamwork it was becoming a real struggle to get James into school and to his desk, he would drop to the floor at the first opportunity and refuse to budge, but with teamwork we’re getting him to his school desk every day and he’s staying there… an achievement in itself!

Let’s take today as a good example… ‘Operation: Get James To His Class’:

1) Having refused the mini-bus (again), I let James settle for a while and then get him ready to go to school in the car.

Once in the car I phone the school to let them know we are 10 minutes away so that ‘Operation: Get James To His Class’ can commence…

2) As we pull up outside the main doors of the school (marked ‘For mini-buses only’, oh the irony!) and I get James out of the car, a member of the school reception team is already there holding the main entrance door open for us. We’re in school… yay!!

3) Through reception, a Teaching Assistant from James’ class is waiting to hold the next door open and to quickly go ahead of us, rapidly swiping us through doors and up stairs until we reach James’ class, removing any barriers that might slow us down or cause James to change his mind and drop to the floor.

4) Entering James’ class, just one member of staff says “Hello” to James so as to welcome him, but not overwhelm him, as he reaches his desk.

5) We congratulate James for successfully making it to his desk, then the previous TA escorts me back out to the car again! Phew!

In a seamless, well drilled routine that we’ve developed over the past few weeks, James makes it into school to his class and to his desk with the minimum of fuss or upset… Teamwork!

While all these simple practical steps are being worked through, there is another part of the team out there playing their part.

We have people praying for James, and for us, that he will be able to make the transition into school happily and well, and we believe that the work of James’ prayer team is just as important in getting him successfully to school as anyone else.

Some people who want to help in this way but who don’t have a faith think positive thoughts about James, and even knowing that people are thinking of him in this way is a real help.

It’s much better than trying to do it all on our own, thinking that it’s all down to us, that no-one else is going to help…  To struggle on determined to carry all of this ourselves.

The reality we’ve found is that while there will always be people who can’t or won’t help, the world is surprisingly full of people who will pitch in and make a positive contribution when we need them and when we ask them; just as we would do for them.

Their willingness to help might be practical, like holding a door open so there isn’t a physical barrier to slow our progress down, or it may be just encouraging us with kind thoughts or prayers… it’s all very welcome!

So, let’s not be afraid to ask for help and to offer it, to seek support and to provide it, to work together as a team for the benefit of our child or children and ourselves…

Life can be so much better when we live it and work at it together!

5 Things I Would Like People to Know

Even though we are a somewhat motley crew we ARE (on the whole) a normal family.

OK, our son is in a wheelchair that is being used to hold all the shopping bags (hanging off the handlebars) alongside feeding pump and bag, oxygen cylinder and other bits and bobs essential for a shopping excursion!

Some people smile at us, others try to avoid looking and on occasion we meet someone who gently touches my arm and says “I’m sorry”, while their sympathetic faces look down at my boy.

But there is nothing to be sorry for; he is the light of our lives.

Life is a wonderful muddle of happiness and worry, like for any parents.

Nevertheless, there are a few things I would like people to know…

1) It is not an Unhappy Life

Life, ladies and gents, is for living. We create our own joy and happiness, likewise we can allow circumstances beyond our control to steal away that joy.

We have chosen to be happy.

2) At times we need to be Allowed to Grieve

When my Dad passed away in December 2016, my world stopped turning. The pain at losing him was visceral, and people understood that I was grieving and needed time to heal.

My son is alive, but as a consequence of his condition he has been robbed of much. And so have we, his family.

My son is here with me, but at times we need to grieve the life we lost.

3) For us, a Diagnosis won’t change anything

For some families it does; it can lead to a prognosis, a better way forward, better therapies.

For Sam, it won’t make any difference to his treatment or life, so we have chosen not to search any longer for that elusive answer.

4) My Boy is Smart

Some days Sam isn’t very interactive. He is exhausted. He may not hold your gaze but watch closely and you’ll see him respond when asked a question.

He’ll use subtle makaton signs for yes, no, tired, hungry. He listens to everything, turning his ears towards you when you speak because he can hear far better than he can see.

Some days he’s just exhausted. But pay attention to the subtle signs, and you’ll see his intelligence shine.

5) Love Him for Who He Is

This is the big one. Please, accept and love my boy for who he is, not what he may or may not do in the future.

He is here, now, and he deserves love as much as any child.

Retailer Next Disappoints with NO Changing Places Toilet!

Being told ‘no we can’t do that’ is something I have heard so many times it is like water off a duck’s back now.

Whereas I used to get very upset and angry if a council or a business told me they couldn’t install a changing places toilet or make other changes I was asking for, I’ve almost resigned myself to the fact that 99% of the responses to my communications will be a simple no.

So it always surprises me if I get a, “yes”, reply.

So much so that I make sure I double check before I tell anyone or get excited that something positive is going to change which will impact on my family’s life, and lives of other families with disabled children or adults.

That was exactly what I did a few months ago, when fashion store Next told me that the new store they were currently building in my local area would indeed have a changing places toilet.

The initial reply from Next was vague which led me to check the information because, when it comes to changing places toilets, I understand not many people know what they are or why they are needed, I had never heard of them before I had my son.

So, on this occasion, I made sure I checked, I asked specifically whether the store would have a hoist and an adult sized changing table in the toilets and was told YES!

So of course, I was ecstatic!

Finally, a big retailer, a national high street name had realised that they weren’t catering for all their customers and were going to do something about it in a brand-new store which they were still building.

I knew several high profile changing places campaigners who had contacted Next over the years and I was delighted that finally they were being listened to and their advice was being taken seriously and acted upon.

I told everyone I knew, people who have disabled children felt like they were finally being heard and noticed, and would be welcomed at Next.

I told the press and they wrote a story about it, they asked Next for confirmation and comment, and whilst the press office didn’t meet the deadline to confirm the information, the customer services team confirmed it for them (post publication the press team still didn’t confirm or deny the story).

Fast forward a couple of months and the new store opened much to the delight of locals in the area.

I was disappointed to be out of the country on the opening day as I really wanted to celebrate the new toilet (as sad as that sounds) but I roped in some friends who were going and promised to take photos for me.

So imagine my shock when those friends reported back that, actually, no, there was no such facility at the store.

Or at least if there was they couldn’t find it, and when they’d asked management they knew nothing about it either.

Surely a mistake?  Surely a corporate giant such as Next wouldn’t make a mistake about something as important as this would they?

I went back over the messages to check I hadn’t read their messages incorrectly, or been vague in what I was expecting.

But there it was in black and white (or blue and grey) Next’s social media team confirming that YES there would be an adult sized changing table and a hoist provided in the toilets in the new Rustington store.

I felt like I’d been lied to.

They’d misled me to believe we were being heard, we were making changes and finally severely disabled people were being recognised and would be provided for and welcomed by high street retailers in the same way that non-disabled people are, by meeting our most basic needs.

After all, everyone needs to pee right?

I went straight back to Next to question them on this and, after they contacted the local store they sent me this reply…

Once again getting my hopes up and leading me to believe there was a changing places facility on the men’s department.

So once again I asked a friend to visit and investigate this mysterious facility.

Guess what…it doesn’t exist!

After numerous tweets and messages I finally get the truth from Next, there is no facility.  They blame miscommunication and claim they didn’t know what a Changing Places facility was.

Next have since sent me flowers and £100 gift voucher as a way of apology along with this letter but they are still missing the point.

I don’t want freebies, an apology for their misunderstanding doesn’t cut it.

They have built a brand-new building and whether they didn’t understand my messages or not the changing places campaign has been around for over 10 years, campaigners have been educating people at Next for years.

Changing places toilets are mentioned in building regs and British Standards, they cannot claim complete ignorance.

But even if they truly were ignorant to the changing places campaign, they have a duty to their customers to ensure they are complying with the Equality Act 2010 which requires reasonable adjustments for disabled people.

I ensured this legislation was referred to in my initial messages to them and explained their duty under the act.

Making this change during the initial build WAS a reasonable adjustment, it was requested before the building was built and as they’d agreed it was going to be provided, we didn’t feel it necessary to push it further at that time.

Now the building is complete and it’s too late, now if we make a request to make adjustments I have no doubt that Next will claim it is not a reasonable adjustment – that won’t stop me from trying though!

I don’t want freebies, I want a toilet my son can use if we visit their store.

I want the other local people with disabilities to also feel they are welcome in this new store, to feel they can spend time there, spend their money there and stay for a coffee afterwards in the Costa Coffee shop safe in the knowledge they won’t be embarrassed by having an accident as there is no toilet they can use.

I want Next to realise that this is more than a PR gaff, it’s people’s lives they have let down by failing to see the importance of this facility.

By fobbing us off they are simply telling us, our children and disabled loved ones, that they aren’t valued by their company and that we should stay away.

The information given to the press by the customer services team may have been incorrect, but their press office has had weeks during which they could have contacting the media and provided the correct information, which could then have been reported BEFORE the store was finished.

That at least would have allowed us to contact Next and request the change before the build was complete.

It would have given us an opportunity to make sure the facility was provided and it would have managed our expectations if they’d said no so that on the opening day families of disabled children weren’t there wondering where the toilet was.

It is 2017, it is time that ALL large buildings which are open to the public and provide toilets for non-disabled people and people with minor or moderate disabilities, also provide toilet facilities for those people with severe disabilities who need a little bit more help.

This new Next store is a large building, has 11,580 square feet of floor space, a changing places toilet only needs 129 square feet (12m2) and a Space to Change Toilet requires even less, so it’s not as though they can claim lack of space is it!

I’m sure Next thought they could shut me up with some flowers and a gift card, but they were wrong, because this isn’t about freebies, it’s about human rights.

Changing Places Closure

The public toilets including a Changing Places toilet currently managed by North East Lincolnshire Council have been closed at the Boating Lake for a long period of time.

Despite requests from local residents, signage still directs people to the toilets and with gates to the area open there is an expectation that the toilets are available.

The next nearest Changing Places toilets are –

Immingham Town Council – Pelham Road, Immingham DN40 1QF

Meridian Leisure Centre – Wood Lane, Louth, Lincolnshire, LN11 8RS

Cleethorpes Leisure Centre – Kingsway, Cleethorpes, North East Lincolnshire, DN35 0BY

If you know of any Changing Places closures – please let us know.

Of Bikes and Unicorns

I know of a lot of people who expend a great deal of time and creative energy trying to bring this happy state of affairs a few steps closer.

But as the parent of a child with Down’s Syndrome, I do sometimes wonder how we can expect the world to be more tolerant of our children’s diversity, when we in the Down’s syndrome ‘community’ seem to have as much trouble as the general population in accepting that not all our children are, or should be, exactly alike.

To give you an example: I once posted a video of Freddie riding a bike, which was something that both doctors and physiotherapists had suggested he would struggle to learn to do.

However, we decided to try, and after a quick demonstration from his big sister, Freddie hopped aboard his new bike and pedalled off down the street with us following after.

I was so delighted I filmed a bit of his ride and posted it on my blog.

Some of the comments I received ripped me to shreds for misrepresenting the capabilities of people with Down’s Syndrome.

This was not from a person who had no real-life experience; it was from the parent of a young adult with Down’s who, this person said, never had been, and never would be, capable of riding a bike.

OK – fair enough, I wouldn’t for one second question that this person was telling the truth when she stated that her child could not ride a bike.

But I fail to see how this fact meant that my video was misrepresenting people with Down’s Syndrome.

My son irrefutably has Down’s Syndrome – there’s no grey areas with that.

It’s not down to an individual clinician’s interpretation of what DS is, either you have it or you don’t: the presence of the extra chromosome must be demonstrated before an official diagnosis is made.

My son was irrefutably riding a bike, a thing with two wheels (plus stabilizers), handlebars and pedals.

As could clearly be seen in the video clip, no one was holding on or pushing, he was propelling himself forwards using the pedals.

So in what way, exactly, was that video misrepresentative?

A similar thing happens if ever publish a blog post that suggests that, as a family, we are generally happy and enjoy good quality of life, or that my son generally enjoys good health.

I find myself accused, in not so many words, of being a liar.

‘Oh, you’re all rainbows and unicorns. I prefer to tell it like it is.’ This is a fairly typical comment.

What is it that makes these people, who have never met me or my child, who have never been to my house, who know nothing about me or my family, assume that I am NOT telling it like it is for me?

When I read someone else’s blog or Facebook post detailing the struggles and negative experiences that they have, their child’s battles with poor health, or with school, or behaviour, and so on, it never crosses my mind to doubt that they are telling it like it is for them.

I would never dream of negating their experience by calling it misrepresentative. I would not try to silence them because their reality is different from mine.

I accept it as fact that some families have a very much harder time than mine do.

Some families do find their experiences reflected in the negative stereotype that the medical profession and the media have laid out for us.

That is the truth – but it is not the whole story of life with Down’s Syndrome.

We accept that in the general population people come with different abilities and aptitudes, differing levels of health and fitness. The same is true of people with Down’s syndrome.

No two sets of parents are exactly alike – they come from different backgrounds, have different attitudes, aptitudes, abilities, and tolerances.

That is why every family dynamic is unique, both within the general population and within the Down’s Syndrome community.

That’s why families like mine, who find that their lives, and their experiences, are very much more positive than they had been led to believe, really do exist.

We are not walking around with ice-cream cornets stuck on our foreheads pretending to be unicorns.

I did not claim that my child could fly, or was riding Pegasus. I said he was riding a bike, and he was riding a bike; I even posted a picture of him riding a sodding bike to prove it.

Our somewhat ‘easier’ experience is equally true, and equally valid, and we have an equal right to talk about it.

No one person, or family, represents the entirety of what it means to live with Down’s Syndrome.

Each one of us makes up a small piece of the picture – but the picture will never be whole unless we are allowed to show all the different pieces.