Now We Are Ten: An Open Letter To My Obstetrician

November 2018 marks a personal milestone for us as a family.

Our Freddie, who has Down’s Syndrome, celebrates his tenth birthday.

So, this month I have written a series of three related posts reflecting on this: the first post is a letter from me to Freddie in which I tell him about his early days and compare them to where we are now.

The second is an open letter to the obstetrician who looked after me when I was pregnant with him, in which I share with her some of the things I have learned during my first decade of ‘lived experience’ as the mum of a child with Down’s Syndrome.

The third post looks forward, towards what the next ten years may, or may not, bring us.

Dear Obstetric Consultant…

I don’t know how many of your patients get a personal visit on the ward after they have given birth, but you came to see me.

My friends had just left, and I was alone in a side room without my baby. Your face was grim, and so very, very sad: a tragedy had happened, one you had foretold months ago, and attempted to avert as you earnestly tried to get me to listen to reason.

As far as I was concerned, it was nothing of the sort. My baby was alive, downstairs in the neonatal unit.

To my mind, death would be a tragedy, Down’s Syndrome was just a circumstance, an added detail.

It is almost ten years to the day since that visit. You didn’t get to meet my baby then, to see how beautiful, how responsive, he was.

I would love for you to meet him now that he is a lively, inquisitive and humorous little boy, so that you could see that there was no need for you to be so worried, so sad.

We are not a story of sadness and catastrophe: thanks to your care we both made it through a high-risk pregnancy (high-risk due to my own medical history) and are now happy, healthy, and enjoying the life we lead. We are an obstetric success story.

Family life did not grind to a halt the day that he was born.It changed, yes, but it continued and even progressed.

Having our baby with DS pushed us right out of our comfort and complacency zone; it challenged everything about the way we thought and the way we lived.

It made us realise that we are more capable and more resourceful than we ever imagined. We learned that it is OK to trust our instincts: not to fear taking a leap of faith if it feels right.

That is why we now live in the house we coveted as a young couple (then living in a two-up-two-down). When it came onto the market we took the leap, snatched the chance – our previous selves would have been too cautious, too afraid, to take on the expense, and the sheer amount of work.

Now we are braver.

Ten years ago, neither I nor my husband had anything more than a basic high school education behind us. We are both graduates now – work, mortgage and three children notwithstanding.

In between we have done all the things that regular families do – we sometimes just have to consider a little more carefully exactly how we go about doing them. We have to prepare and plan more, but we still do things.

So, ten years later, I can say, hand on heart, that tragedy was averted after all.

But was only averted because I refused to listen to so-called ‘reason.’

It knocks me sick to think that if I had allowed myself to be intimidated by the grave inventory of medical complications you listed, or the social complications that you implied were bound to follow.

If I had not been old and wise enough to have learned that ‘quality of life’ is a subjective concept, then I might have been persuaded to destroy my own beautiful, beautiful little boy, whom I love so much, and who loves me so very much.

And for NO good reason. He does not ‘suffer’ from Down’s Syndrome at all.

He is a contented young lad with a great capacity for learning: his reading ability is the same as a typical child his age and he is gradually coming to grips with all the other school subjects, too.

More importantly he has a tremendous capacity for forming positive relationships: this must be one of the most important skills any human being can possess, and one of the greatest determiners of future happiness and quality of life.

Every day I thank my lucky stars I am so stubborn and strong-willed – the thought of what might have been if I had been less headstrong, less sure of myself, or more inclined to do what others tell me is ‘reasonable’ or ‘sensible’, does not bear thinking about.

The grief at ending a welcome (if unplanned) pregnancy would have been overwhelming.

I cannot imagine how much grief and guilt would have been compounded if I found out later, as I inevitably would have done, that the prospects for a child with Down’s Syndrome, and their families, were not nearly as bad as I had been led to believe.

I have read that maternal mortality is higher in the years following abortion (or pregnancy loss for any other reason), and I do not think this is a coincidence.

Termination would not have been a ‘get out of jail free’ card for me, nor would it have alleviated suffering – for us there has been none – rather, it would have caused suffering for me, long-term.

I am not accusing you of being deliberately directive, or laying any kind of blame at your door. You were simply doing your job, being a good doctor.

I understand that doctors have a duty of care to their patients to explain to them the possible complications or consequences of any course of action or treatment: they are trained to consider things in terms of risk v. benefit.

In the case of a patient who has become sick the benefit of any treatment or procedure will usually be obvious – health will be restored, and any possible risks are weighed against this.

But, when counselling a patient carrying a baby with Down’s Syndrome medical professionals often talk only about complications and ‘risks’. I suspect that most obstetricians and midwives see no positives in the situation at all.

They are conditioned to regard it only as a medical problem to be ‘solved’ by terminating the pregnancy.

But, as I have learned over the last ten years, there are some positives, because Down’s Syndrome is more than medical.

Many of the problems associated with Down’s Syndrome are not caused by the syndrome itself, but by a society that insists on viewing it in the most negative possible light.

It would be easy to dismiss the experiences of one mother, like me, with the words ‘they’re not all like him’.

I have heard of other women, in other hospitals, being told ‘don’t believe the happy pictures’.

But, after ten years of lived experience parenting a child with Down’s Syndrome, getting to know people with DS and their families, I can tell you that the happy pictures are believable. But you don’t have to take my word for it.

While there may not be anything positive about DS in the medical textbooks, there are scholarly papers out there that do present an encouraging picture of family life with Down’s Syndrome.

One series of studies looked at the perceptions of parents and siblings, and also at the self-perceptions of young people and adults with Down’s Syndrome.

The researchers discovered that, amongst the sample of parents studied, 99% reported that they loved their child, 97% that they were proud of them, and 79% reported that their outlook on life was more positive because of them.

The overwhelming majority reported that they were happy with their decision to have them.

The picture amongst siblings was similarly positive, with 94% reporting that they were proud of their brother or sister with DS, and 88% that they were a better person because of them.

Amongst young people and adults who have DS 99% indicated that they were happy with their lives, 97% and 96% respectively reported that they like who they are and how they look. The overwhelming majority indicated that their lives were happy and fulfilling.

Other studies have looked at the effect that having a child with Down’s Syndrome has on divorce rates.

In this, researchers discovered something surprising – not only did the parents of children with DS have a lower divorce rate than the parents of children with other kinds of disability, they also had a lower divorce rate than the parents of typically-developing children.

A quite different picture to the one presented to pregnant mothers during the antenatal screening process, I think you’ll agree.

Which is why I have become involved in campaigning for more balanced information to be given to expectant parents, information that is up-to-date and more than just medical: information that includes the lived experience of parents like me — and our children, too.

Many people with Down’s Syndrome are more than capable of speaking up for themselves and they are shouting loud and clear that life with Down’s Syndrome is well worth living. If only the world would listen.

Ten years ago you listened to me when I refused to consider termination, with a heavy heart you accepted my decision and did not urge me to change my mind, or repeatedly ask if I had done so.

You made a plan for our care. And it is because of that care that I am now planning my baby’s tenth birthday, and after that, the next stage of his education.

I hope that the next time you have to tell a couple that their unborn baby may, or will, have DS you will think of us and your heart will be a little less heavy because of what I have told you today.

Can I ask you, when you go into that consultation, not to tell the couple that you have ‘bad news’ for them – describe it as ‘information’.

And when you list the possible medical implications, as a good and diligent doctor must, please also remember to tell them that:

Although certain medical conditions are more likely, they are not inevitable. Some people, like my son, have none at all.

Advances in medical science and technique mean that most of the conditions that may arise can be effectively treated or managed, enabling people with DS to live longer and healthier lives than ever before.

Approximately 50% of people with DS don’t have a heart defect.

Individuals with DS tend to have significantly higher adaptive skills than their low IQ scores would predict.

And you can reassure them that, if they choose to proceed, they and their unborn baby have every reason to look forward to a great life together.

At the Present Time

On the last weekend of the long summer holidays the first Christmas cards appeared in a shop in my hometown. A lot of people grumbled that it was ridiculously early, but it seemed perfectly natural to me.

You see, as soon as Freddie is settled back at school after the summer holidays, I have to start thinking about presents.

Freddie’s birthday falls just a month before the Christmas festivities, and like most families we need to spread the cost.

I have to get my thinking cap on good and early because trying to fathom out what would make good birthday and Christmas gifts for him has always been a bit of a conundrum.

I know that children with Down’s Syndrome should be encouraged to display age-appropriate behaviour.

I have to say that in Freddie’s case his chronological age and developmental stage are nowhere near each other.

The different areas of his development (physical, intellectual, and emotional) are at slightly different stages.

It’s getting easier for us, his immediate family, now that he is better able to communicate his needs, wants, and interests to us.

But our relatives still find it really hard to gauge exactly where to pitch a gift.

The older ones tend to assume that he can’t read and give him babies’ picture books, which is frustrating because his sight-reading ability is similar to that of a typically-developing child of the same age.

It’s his understanding of context which needs improvement.

I’m always pleased when anyone gives him a gift that is appropriate to his chronological age, because it means they’ve thought about the little boy and not the disability

Although, I also always feel bad that I can’t send them a picture of him happily coming to grips with his new toy, or tell them how much he loved it, because it actually didn’t interest him at all.

In this case, we put the gift away for a while, in the hope that he will one day ‘grow into it’.

We are not ungrateful for any present given to Freddie, even if it’s not appropriate – we understand that it was given in the spirit of generosity and kindness.

It’s a just a shame that he won’t get any benefit from it, and the giver will have wasted their money.

So, what would my advice be to any grandparent, auntie, uncle, or other relative (or friend) who wants to buy a gift for a child with a learning disability, developmental delay, or other disability or additional needs?

1. Ask the child’s parents what they would like/need. You won’t hurt or offend them by admitting that you don’t know what to buy for their child.

It’s far more tactful to ask, and present them with something that will be really useful and appreciated, than to buy something that their child will never be able to use.

It will only remind the parents of all the things their child can’t do.

2. Be open-minded. Something may not sound like your idea of a present, but if it works for the child you’re giving it to, does it matter?

It doesn’t have to be a toy or be in fancy packaging to be a great gift

One year my dad bought a car steering wheel from a breaker’s yard for one of my children, who loved to play ‘driving’ but would not accept a toy steering wheel because it didn’t look realistic.

3. It’s OK to give money. Any monies given can be put into an account for the child’s future, or can be used to buy things as and when the child needs them.

With Freddie’s birthday being so close to Christmas we found it useful to have some money we could put aside for later in the year – if we needed to get new toys or equipment because he’d had a developmental spurt.

Now that he’s getting older he enjoys going to the shop to choose a treat with his own money, and it’s a great way to teach him how money works.

4. If giving money feels too impersonal consider giving the money in advance of the day with a handwritten gift tag and a sheet of wrapping paper or gift bag enclosed (see below).

That way, Mum and Dad can order or buy the gift with the money, wrap it and stick your gift tag on. Voila – there’s no mistaking it came from you!

5. Remember – some children don’t like surprises. They may need to know in advance what they will receive.

They may need the gift to be clearly visible and not wrapped in paper (you can’t see through paper, so you never know what’s inside it).

Some enterprising souls have got around this by presenting their gift wrapped in clear cellophane to make it look present-like, but before doing so check with parents in case the texture or sound of cellophane would be problematic.

6. If wrapping – consider the child’s needs/dexterity. When Freddie was little, he hadn’t got the level of fine motor skills necessary to tear wrapping paper, but he did love to rummage in a bag, so we put his presents in gift bags.

He has no trouble tearing paper now, and loves the excitement of it, so these days we wrap things, but don’t go mad with the Sellotape because he finds that more difficult to pick open.

So there you have it – my six top tips for gift-giving.

If you, like me, are the parent of a child with a disability or additional needs, what tip or tips would you add to this list?

The Beauty of To-Do Lists

One Friday afternoon in the summer holidays a friend asked me if I was free to meet for a coffee and a catch up. This worked out very well for me, as I was heading into town to take Freddie for his swimming lesson.

My friend, like all my close friends, understands that wherever I go Freddie usually has to come along too; she left the choice of venue to me for that reason.

My friend also understands me very well, too.

We were already sitting at a table in the coffee shop when I realised that, in my flustered preoccupation with getting us out of the door on time complete with swimming kit, money and change for the locker, I had forgotten to pick up Freddie’s magazine and pens.

My friend reached into her bag. ‘I got these for him, is that ok?’ she said, pulling out a little notebook and a packet of small pencils. See what I mean – she obviously knows me very well!

Freddie doodled happily while we chatted, then, after a while he said: ‘Mummy, write now and next.’ A few questions revealed that what he apparently wanted me to do was write down all the things we had to do that afternoon, in the order that we had to do them.

So I broke the required sequence of events down into small steps and wrote each step on a separate line.

It went something like this:

Finish our drinks

Leave the coffee shop

Walk to the swimming pool

Get changed

Swim with Sam (his swimming instructor)

Get changed

Walk home

He seemed quite happy with the list, and when we finished our drinks and started to pack up our things, he put a tick on that line.

We said goodbye to our friend, put another tick on the list and headed off to the pool, keeping the notebook and one pencil handy so we could tick each thing off as we did it.

Freddie struggles with the transition from one activity to another, and with routines that require him to complete a series of different tasks one after another in quick succession. At the same time, though, he loves routines because they are predictable and help him make sense of things.

He is a lot less anxious, and therefore less likely to be difficult or uncooperative, if he knows what will happen ‘now and next’. For this reason we do have a number of nicely printed and laminated visual schedules around the house.

A lot of parents, I know, produce fantastic visual resources of their own; but as a family we do not seem capable of owning a printer for more than a couple of weeks without breaking it beyond repair (or without someone becoming apoplectic at the cost of ink cartridges every time we use it), so most of our schedules were made for us by the LD nurse from CAMHS.

They are fine as far as they go, but they do not cover every eventuality, just the basics like the morning and evening routines. Because they are aimed at encouraging predictability and consistency, pre-made schedules can be inflexible

Sometimes in life changes have to happen, however much we try to keep things the same.

For the time being our ad-hoc, slightly Heath Robinson handwritten ‘To Do’ lists are suiting us very well.

They allow Freddie to ‘see’ what will happen ‘now and next’, but they are flexible enough to allow for change – both day-to-day (say, if we have an appointment) or even hour-to-hour (I suddenly find I have no choice but to run an errand on the way home from school).

The tick box on each line makes it as interactive as the pre-made ones, which have Velcro-backed pictures that are moved from one part of the chart to another as the task is completed.

I only list a few things at a time, so that Freddie doesn’t get overwhelmed.

We write the list together, talking about what needs to go on it. I have to be very precise in what I write, though, and it all has to fit on one line – Freddie is a stickler about things being ‘just so’.

This particular notebook has a picture of a spaceship in the bottom corner of each page, so we drew an alien in the ship and a speech bubble all around the page, so it’s almost like a game of ‘Simon Says’, only Simon is an alien who just happens to speak English …

No doubt there is an app that will do all this, but my phone is so outdated that it’s unlikely to be able to run it – and being a one-income family, new phones are pretty low on the priority list. This little notebook will fit in a bag or pocket, though, and it never runs out of battery. It also doesn’t break if Freddie throws it on the floor.

Come to think of it, compiling lists like this is something Freddie’s dad has done all his life – certainly for as long as I’ve known him, anyway.

Perhaps it’s a family tradition; one that I, a much more chaotic, spur-of-the-moment person, is only just discovering the beauty of.

To Mum and Dad on Diagnosis Day

You have just received the news that your baby has, or will have, Down’s Syndrome. This must have come as a shock. Perhaps you feel a sense of grief, all your hopes and dreams for your child, for your family life and your future now lie shattered on the floor around your feet.

Perhaps you feel angry or cheated: ‘Why me?’ Or maybe you are numb, suspended in this moment, while all around you the world keeps turning as though nothing had happened.

Or perhaps you feel something else. Whatever your emotions are right now, it’s OK to acknowledge them, put a name to them – they are all perfectly natural and understandable reactions to the information the doctor has just given you. I can guarantee that you are not alone in how you feel.

Perhaps your doctor has just explained to you the ‘risks’ of having a child with Down’s Syndrome. Doctors are trained to talk in terms of risk. They have a duty of care which means they must inform their patients of the potential dangers of any procedure or course of treatment.

In the more usual kind of scenario they meet – that of treating typical people who have become sick – the other side of the coin is obvious: the procedure or treatment will make them well again. But when doctors deliver a diagnosis of Down’s Syndrome they often do not explain to their patients the flip side to all the ‘risks’ they talk about: most are not aware that a flip side exists, because they have never seen it.

I have seen it — because ten years ago I was sat where you are now, in a doctor’s office with loaded words hanging in the air all around me: ‘mental retardation*’, ‘developmental delay’, ‘heart defects’, ‘bowel defects’, ‘infection risk’, ‘leukaemia risk’ … (* the doctor’s words, not mine).

Ten years later, I hardly think about those words at all.

In these early days no one will be able to reassure you about what the future holds in store for your child. The doctor won’t be able to tell you what, if any, health problems your child will face.

No professional will be able to predict with any accuracy what your child’s level of ability will be – to be honest, the only person who can answer that question is your child them self, who will make this clear in his or her own time.

You have probably already been bombarded with information, too much to fully take on board — so I will only tell you one small thing today, and it’s this: loving a child with Down’s Syndrome is easy.

This is not because they conform to the ‘oh bless, aren’t they all so happy and loving’ stereotype; it is because your baby will be simply the most beautiful, the most exquisite little thing you have ever seen.

It is because your child will be just as engaging, inquisitive, humorous and cheeky in their own way as any other child.

It is because, at the end of the day, they are your child, your own flesh and blood, your mini-me, and loving your own child is the easiest and most natural thing in all the world.

Perhaps it is also because children like ours have a natural, subconscious wisdom, a knack of cutting straight through the crap to the heart of what’s important. They teach us as much as we teach them, they show us what it truly means to be human, and to be humane.

This love is the foundation of all else.

You may not believe me now, but you can do this – you are braver, stronger, more resourceful and resilient than you know. This love will bring those qualities out of you. Trust me, they are there, even if you can’t feel them yet.

There is perhaps one more thing I should tell you before I go: these early days, when everything is new and frightening, and shadowed with grief; when the weight of your child’s diagnosis presses down on your shoulders like you’re carrying the whole world on your back, they do pass. These days do pass.

 

Swimming Lesson Dilemma

It strikes me that it would be a good form of exercise for him, bearing in mind his hypermobility, as his weight would be supported by the water, so there would be less strain on his joints.

It’s also a fun and relaxing pastime, and, last but most certainly not least, it’s a very important life skill.

But when it came to booking swimming lessons for him, I faced a dilemma.

Should I enrol him in an ordinary, public swimming class alongside other, typically-developing children, or look for something more specialised?

There is lots of evidence to show that children with Down’s Syndrome do best when educated alongside their typically-developing peers.

With appropriate support many young people with Down’s Syndrome do indeed thrive in mainstream education, and in mainstream extra-curricular activities.

It’s what all parents aspire to for their children – that they will hold their own in ordinary life. In many support groups (particularly online ones) there’s even a certain amount of snobbery about it: any parent who even considers a specialist school or any activity aimed primarily at disabled children can find themselves implicitly accused of underestimating their child, or of letting them down, or not wanting the best for them.

Actually, it’s worse than snobbery, it’s a form of unconscious, unthinking, ableism.

Who exactly have these parents let down – their child, or ‘the side’?

It almost seems that some people, in the desire to make Down’s Syndrome acceptable to the ‘typical’ world, seek to deny the existence of anyone who doesn’t fit the image of DS they wish to portray.

We all want to see acceptance, but that acceptance will be meaningless if it does not include everyone, regardless of ability, or how close they can come to being like ‘typical’ people.

We will never change the way society views disabled people if we simply pander to existing ideas of how people ‘should be’.

In an ideal world, of course, mainstream life and education would accept and include everyone, and cater for their needs.

But we don’t live in an ideal world, and real-world mainstream life, with its one-size-to-fit-the-majority organization, is inaccessible or overwhelming for some.

Even with support, some people will struggle to reach their full potential if ‘mainstream’ is the only option.

But I digress (and I’m ranting again).

We didn’t take Freddie to the pool as a baby or toddler.

When he was born he had something called Transient Abnormal Myelopoesis – a rare sub-type of Acute Myeloid Leukaemia, fortunately usually self-limiting.

Oncologists aren’t big fans of public swimming pools for obvious reasons, so we were advised it would be best not to take him.

The condition resolved, thankfully, but he was school-age before we felt confident enough in his health to consider swimming lessons.

This meant that Freddie would have to start in a class of children all much younger than himself.

I didn’t think this would be a good thing for either his dignity or his self-esteem.

And I wasn’t convinced that an ordinary swimming class would be able to meet his needs.

I was afraid he might not get very much out of it. He might not even be safe.

Freddie undeniably has cognitive and physical developmental delays.

This is not me underestimating him, or believing the stereotype.

This me knowing my son and accepting him as he is.

He also has a very limited attention span, and is easily distracted – I’m not suggesting that is true of all people with Down’s Syndrome, because it isn’t, but it is true of Freddie the individual.

How would a conventional swimming class, with a group of children all requiring tuition and supervision, and the teacher standing on the side shouting instructions, work for him?

How would the instructor keep his attention?

Would he or she be able to get his attention in the first place?

Would he be able to process the instructions (especially as they would be delivered in not to him personally, but simply in the general direction of the group, and in a raised voice)?

I had my doubts.

I looked for dedicated ‘special needs’ swimming classes in my area, but found nothing.

Then one day Freddie’s school sent home a leaflet about a multi-sports club running at the local leisure centre.

As part of the club activities it offered a free hour in the pool for the children and their parents.

We took him along, and while we were there, raised the subject of ‘special needs’ swimming classes.

They didn’t know of any either, but one member of staff did offer one-to-one swimming lessons, and was already teaching a couple of children with additional needs.

Best of all, during these lessons she was always in the water with her pupil. It was expensive, but we signed him up.

Slowly but surely he began to make progress.

The look of puppyish glee on his face as he swam alongside his instructor made it worth every penny on its own.

But always there was always this little nagging voice in the back of my mind telling me that I was denying him his rightful chance to interact with his peers and participate in mainstream life, that I was underestimating him and holding him back.

It didn’t sound like my voice, but it was there.

During school holidays, Freddie’s swimming teacher holds her classes at a different pool.

Although Freddie is always a bit discombobulated during the holidays (although he likes not having to go to school, he doesn’t like the break in routine) he’s previously been OK with this change.

But last half-term, when we turned up for his lesson, there was also another class running in the pool at the same time, a group class, with its own instructor, WHO WAS VERY LOUD AND SHOUTY.

I had to resist the temptation to sit there with my hands over my ears, goodness knows, I thought, how Freddie felt about it.

It quickly became clear that he wasn’t coping at all.

He wouldn’t ‘listen’ to his own instructor (I daresay he’d just stopped processing and gone into shutdown mode), and he refused to even try to do a single thing she said.

In the end she brought him out of the water early, because he just wasn’t getting anything at all out of the lesson.

And as disheartening as it was to have his lesson cut short because he wasn’t co-operating, it did at least confirm to me that I had made the right decision.

I had not let him down or underestimated him at all.

It occurred to me that if I had insisted on enrolling him in an ordinary, public swimming class, then, rather than opening doors to mainstream life, I would actually have been limiting his opportunity for meaningful learning – because his particular needs would not have been met.

If I were to insist on placing him in situations where I know that he, as an individual, will not cope, or will not be able to process the information he needs to know (because it is not being delivered to him in the right way i.e. one that suits his learning profile), I would not be preparing him to take a place in the mainstream world.

No, I would be de facto excluding him from it in the long run, as he would be unable to adequately learn the things he needs to know in order to function there.

But if I allow him to take his time, and to be taught things in a way that makes the information accessible to his way of learning, then, even if it sets him apart sometimes in the short term, ultimately he will be more likely to be able to hold his own in the mainstream world, because he WILL have been given a fair and equal opportunity to acquire the knowledge and skills that he needs.

At the end of the day, Freddie is not a poster-boy for someone else’s campaign, or the hook on which I hang my own pride and ambition.

He is a little boy who needs his mother to shut out all the background noise, and open her ears fully to him and his needs.

Postscript: This week Freddie’s swimming instructor told me that, now that he’s had some intensive one-to-one, she would like to start overlapping Freddie’s lesson with that of another boy that she teaches singly, so that they would get a chance to swim together (with her in the water beside them) for part of their respective lessons.

I was agreeable, and so was the other boy’s mum.

I am very much hoping that this will work, because if it does, then slowly, stroke by stroke, we’ll be creeping towards our ultimate goal – that of Freddie being able to go to the pool during an ordinary public session, and enjoy a sociable swim alongside everyone else.

Carer’s Week: What Being a Parent-Carer Means for Me.

It means that the person who depends on me has all the help they need: not just to make their life possible, but to make it happy, comfortable and fulfilling.

It means that I don’t have to worry whether they are being cared for properly: I know they are getting the best, most loving, care.

It means I will be missed when I am gone.

It means I don’t look into the future: most of it is obscured by dark grey clouds of worry.

It means I have to make concrete plans for a future I can’t see and don’t want to think about: who will help him cope with my absence when I am gone?

Who will be there for him to love, and will they love him back?

How much will he be able to for himself by then?

What services will there be still left to help him?

It means I face my own mortality every day.

It means my doctor thinks I am a hypochondriac:

I worry that every small ailment that befalls me might be the start of something serious, and I need to get it checked out, because if it is I need to seek treatment early.

I can’t afford to be incapacitated or to die prematurely — you see, I have someone who depends on me.

It means, conversely, that I don’t always behave in a healthy way: it can take a lot of coffee and biscuits to recover from a difficult morning, or to get me to the end of a piece of writing that someone, somewhere, might pay me for.

It might be cute to think of myself as ‘powered by fairy-dust’, but the truth is I’m powered by rich-tea crumbs.

It means I have to accept stress as part of my life and learn how to mitigate it: and THAT has nothing to do with scented candles and bubble bath – or wine, either.

A hangover will only add to the stress.

It means I must also decline most invitations to social events:

You see, there are very few people who are either willing or able to care for my child, so nights out are precious.

But, if I do come to your shindig, then you can rest assured that you are a very important person in my life.

It means I’m not as good a friend/relative as I’d like to be:

please believe I did think about you today.

I did fully intend to call or message you.

But before I could there was something I had to take care of that wouldn’t wait, or something that came up unexpectedly that could not be ignored or put off, and once again my last thought as my head hit the pillow was ‘Oh bugger, I didn’t get in touch with so-and-so. Again.’

It means that I must also decline any invitation to play with the Competitive Mothers:

You see, I do ‘Punk’ mothering! It’s a completely different game; one which often requires you to make up the rules as you go along.

Everyone who plays it is playing by their own rules: so there can be no competition except with oneself – we’re all just trying to do better today than we did yesterday.

It means I see a whole community of people who are all but invisible to the rest of the world:

other carers and their loved ones. Though I have never met most of them, and will never do so except, probably, via the internet, they are my tribe.

I have more in common with them than with many of the people who are part of my real day-to-day life.

It means I now realise that my other children DID come with a manual, of sorts:

our parents, grandparents, aunts and uncles, siblings, cousins, friends and peers can all give us advice on how to raise a typically-developing child.

But, when it comes to raising a child with ‘designer genes’ most of them won’t have a sodding clue, because they’ve had no experience of it.

It means I know that the words ‘tantrum’ and ‘meltdown’ are not synonyms.

It means that I am resourceful: however, most people don’t call it that, they use terms like ‘weird’, and ‘whatever is she doing?’ or ‘why doesn’t she do something about that’ (see above ‘Punk’ Mothering).

But it means, first and foremost, that I am a parent.

It means that I have someone that I love, and who loves me.

It means that they are not alone, and neither am I.

The Humanity Quotient

The thing I’ve been reading this time, which started me thinking, was a short article about how recent studies into Rett Syndrome and intellectual impairment have shown that clinicians have been mistaken all along about the degree of intellectual impairment that Rett Syndrome brings.

This is because they base their assessment of intellectual impairment on the person’s IQ score.

But an IQ test requires those being tested to be able to indicate a response, so a person who can’t talk, or move their arms to tick a box, or to point, is at a distinct disadvantage.

Rett Syndrome affects (among other things) the ability speak and the ability to control arm movements. But when researchers modified some standard tests so that eye pointing, or eye gaze communication, could be used by the test subjects to indicate their response, what they found was that the degree of intellectual impairment was often much less than clinicians had traditionally assumed.

These findings have implications for other conditions that leave those affected unable to speak or move, such as Motor Neurone Disease.

I know very little about either Rett Syndrome or Motor Neurone Disease; what piqued my interest in the article was the idea that clinicians — doctors and the like — could be wrong about the level of intellectual impairment present in a particular condition.

You see, I have a son with Down’s Syndrome, a condition firmly characterised in the minds of many by a lack of intelligence – a low IQ.

And a low IQ is (wrongly) synonymous in the eyes of the world with a lack of ability to think or learn, and a lack of ability to understand, or even feel, emotions: the stereotypical ‘happy’ personality of people with Down’s Syndrome is dismissed as being due to stupidity, by the trite phrase ‘ignorance is bliss’ (by people who don’t realise how much more ignorant they are themselves).

Some even associate it with a lack of awareness of physical sensation: more than one parent I know of has been asked (by doctors) if their child can feel pain.

At worst, a low IQ is thought of as rendering the person ‘animalistic’, lower in humanity than those with a higher IQ. This leads not only to wrong assumptions, but to ill-treatment and discrimination.

I was surprised to find that on my son’s EHCP his level of learning disability is described as moderate; from what I have observed in him I would have thought it was mild.

I assume, therefore, that the description is based on his IQ, which suggests a score of somewhere in the range of 35-50 (a score of between 90 and 110 is considered to be the average).

Yet he is inquisitive and alert little boy, who learns quickly by observation and imitation. At age nine his sight-reading ability is comparable to that of a typical ten-year-old, though his grasp of meaning and context is not so advanced and needs some more work.

He knows how to write, but low muscle tone means that his fine motor skills are relatively poor: it’s more difficult for him to grip a pencil and his fingers quickly become tired, leading to deteriorating letter formation (I really must teach him to type).

He has a good memory, especially for people’s names. I suspect, based on what I have observed, that he has a good memory for other things, too.

Those things are harder for him to put across, though, as they require the use of expressive language rather than just one word, and he struggles to organise the words into the right order and push them out of his mouth, even though he knows what he wants to say.

He notices, long before anyone else in the house, if I am unwell, or just not my usual self.

All of which makes me wonder: what exactly is IQ, and how does it relate, in real terms, to intelligence?

By definition a person’s IQ is a number representing their reasoning ability, measured using problem-solving tests, compared to a statistical norm, or average, for their age. So, basically, it’s just a test score.

Standard IQ tests measure:

Spatial ability

Mathematical ability

Memory ability

Language ability

However, the tests do not differentiate for, or take account of, environmental factors. As discussed above, conditions which limit the ability to speak or move make taking a standard IQ test next to impossible.

Impairments in hearing and vision can also affect a person’s ability to perform in the test, and can interfere with the ability to acquire the information needed to take the test successfully.

I would also suggest that factors such as the ability to concentrate, or to sit still, might well have a bearing on a person’s performance.

Coming from a background that limits your opportunities for learning is also an environmental factor that will affect test performance.

It is no coincidence that the estimated average intelligence for people with Down’s Syndrome have been trending steadily upwards in recent decades – since we stopped shutting them up in institutions, and allowed them to have a family life and an education instead.

There are some things that standard IQ tests do not measure, although they are qualities which could be considered to form part of a person’s overall intelligence.

These are:

Creative ability

Social skills

‘Wisdom’ (what constitutes wisdom, anyway?)

Acquired abilities

Emotional Intelligence*.

*Some psychologists believe that standard measures of intelligence (IQ scores) are too narrow, and do not encompass the full range of human intelligence.

They suggest that the ability to understand and express emotions can play an equal, if not more important role in how people fare in life.

People with Down’s Syndrome often seem to demonstrate an innate ability to pick up on, empathise with, and respond appropriately to, the emotions of others, and can sometimes be acutely sensitive to unexpressed emotions, such as the ‘atmosphere’ in a room.

Very likely they would score highly on any test that allowed them to express their emotional intelligence. Many supposedly very intelligent and intellectual people would not do so well.

I’m sure we can all think of one or two eminent philosophers who might fall into this category.

Standard IQ tests do not measure adaptive behaviour, either. Adaptive behaviour is a measure of how well people function in their environment, e.g. quality of day-to-day living and work skills.

Researchers have found that children and young adults with Down’s Syndrome have significantly higher adaptive skills than their low IQ scores would suggest.

When we take all of this into account we can see that IQ scores alone are not an absolute measure of a person’s cognitive abilities.

In any case, neither IQ scores, nor perceived intelligence, should ever be regarded as a measure of a person’s worth or humanity.

For clinicians to make mistaken negative assumptions about cognitive ability based on a person’s ability to successfully take a standard IQ test is far more grave an issue than it might at first seem.

For too long, they, we, have conflated IQ scores, intelligence and cognitive function to produce a grotesque, dystopian, tariff of level-of-human-ness.

Those whose IQ scores put them at the bottom of the tariff are dismissed as being unable to think, to learn, unable to feel and understand emotions or physical sensations, and unable to appreciate and enjoy life as we do; they are dismissed as less than human and treated accordingly. Or not treated.

This is why people with learning disabilities die, on average, 27 years younger than the rest of the population; not as an inevitable consequence of their disability, but often due to delayed treatment, lack of care, abuse and neglect.

It’s why approximately 90% of babies found to have Down’s Syndrome prenatally will be aborted.

Perhaps it’s also why Jeremy Hunt couldn’t spare the time to answer an Urgent Question about the LeDeR Learning Disabilities Mortality Review.

All because IQ scores are falsely considered to be the measure of a person’s level of human-ness and worth.

Public Inconvenience

It is, of course, a RADAR key.

The RADAR National Key Scheme is a nationally recognised scheme that provides access via a user-held key to (so-called) accessible toilets, which often must be kept locked to counter vandalism and misuse. Of course, there are many accessible toilets that are left unlocked, but Sod’s Law states that when you’re desperate the only nearby suitable toilet will be part of the key scheme.

You see, if either Freddie, or myself, needs the toilet while we are out, we have to use the accessible, or ‘disabled’ toilet.

My youngest son, Freddie, has learning difficulties, developmental delay, hypotonia, and poor fine motor skills: all of which mean he needs some help and supervision when using the toilet.

I certainly couldn’t leave him waiting outside the ladies’ while I go to the loo; he is vulnerable, has no sense of danger, no fear or mistrust of strangers, and is apt to get distracted and wander off.

But this little key (which is actually quite big compared to my other keys) is not only the key to a day out, but also the key to the realisation of just how much misunderstanding there is about so-called ‘disabled’ toilets.

I’ll spare you a lecture on the absurdity of that phrase, because I’m not talking about misunderstandings in English grammar, but about the general misconceptions regarding which people might need to use an accessible toilet.

Because, despite the recent appearance of notices stating that ‘not all disabilities are visible’, many non-disabled people still seem to believe that ‘disabled’ toilets are only intended for wheelchair users.

Cue dirty looks, tutting, and even snide whispers when an ‘able-bodied’* woman (like me) takes an ‘able-bodied’* child (like Freddie) into one.

Not only do we need to use the accessible toilet, we’re pretty much obliged to.

Although there is no set legal limit, commonly accepted safeguarding guidelines state that children over the age of eight should not use toilets/changing rooms designated for the opposite sex, and many public places incorporate these guidelines into their policy.

Freddie is nearly ten, well over the age at which it is generally considered appropriate for a boy to go into the ladies’ toilet, and I am definitely far too old to go into the gents’ with him.

But it isn’t the fact that some busybody might complain that stops me from taking him into the ladies’ (probably the same person who rolls their eyes when I take him into the ‘disabled’ toilet): because for every one of those there will be half-a-dozen who’ll say ‘Oh go on in, duck, I don’t mind’.

The reason I don’t take him in is because this isn’t about what other people think, it’s about Freddie, and his dignity and comfort.

Not only is there not much room for two people in a standard toilet stall, there isn’t all that much privacy either.

We can be overheard whilst inside the stall, and when we come out to wash our hands he can be seen, a growing boy in the ladies’ toilets.

It’s not good for his confidence, or his self-esteem, it’s not good for him full-stop.

It makes him a figure of pity; it’s embarrassing for him.

You see, having a learning disability doesn’t mean that you are not aware.

It doesn’t mean that things like this don’t matter to the individual – they DO.

Perhaps you think it is unfair of me to complain about the general lack of understanding regarding accessible toilets, and perhaps it is.

After all most people don’t need to use them, and so, naturally, they don’t think about them – it’s none of their concern.

But it should concern all of us.

And not just in the interests of a fairer society for all, but out of self-interest (often the greatest motivator of all).

Disabled people form the largest minority group on earth.

And, uniquely, it is the only minority group that any one of us could join at any time. If you, or someone you love, joined this group tomorrow, hopefully you would be among the lucky ones, like Freddie and me, for whom a standard accessible cubicle is suitable, because we can almost always find one when we need to, even if we have to carry a special key to get into them.

But if you were to find yourself among the quarter of a million or so members of the population who require a height-adjustable adult-sized bench and/or a hoist to fulfil their toileting needs (often referred to as a Changing Places toilet), you would find that, far from being only for wheelchair users, many standard ‘accessible’ toilets are completely unsuitable for  some wheelchair users.

For them, and their families/carers, my little key would not unlock the door to dignity, and a nice day out with the family, nor even a trip out to buy essentials, or a visit to the doctor, or any other of the countless errands, outings and necessary excursions that the rest of us take for granted every day.

For them the key is held by other people, people who grumble: ‘it’s far too expensive to install and maintain such facilities,’ or ‘why should we have to provide facilities like that?’ or even ‘they should just stay at home.’

There are more ordinary public toilets in Wembley Stadium alone than there are Changing Places toilets in the whole of the country.

This situation is one of the most eloquent demonstrations of the Social Model of disability – where people are unable to participate in certain things not because their ‘condition’ or ‘impairment’ prevents them from being able to, but because society makes it impossible by failing to cater for their needs.

But it could so easily do so.

Where the key to this really lies is in a shift away from the ‘why should we?’ attitude to one of ‘why shouldn’t we?’

After all, there but for the grace of God …

To find out why not all ‘disabled’ toilets are suitable for all disabled people, or to learn more about the Changing Places campaign visit here.

*Actually ‘able-bodied’ is not a term I use myself, I prefer ‘non-disabled’, because there are disabilities that are not physical, and disabilities that do not appear to be physical, or are not ‘visible’ at all.

Teacher’s Day: The Specialists

Their schooldays were a difficult time.

In the whole of their time at school there were, hand on heart, only three teachers who truly understood my child, their needs, and how they might, should, be met.

Of these three, one was the parent of a child with a similar diagnosis, and the other two had both previously worked in Special Schools.

Our local Infants School made it quite clear that I had presented them with a problem: a headache that got in the way of their real work – that of providing education.

Junior School is where we encountered the first two of the three enlightened teachers.

Thank goodness – if it were not for them I do not think my child would have remained in Local Authority education (and I am ill-equipped to home-school).

There were, of course, some teachers who tried very hard to support my child and to understand, but who never truly ‘got it’.

At some point along the way there was always a fundamental disconnect.

So often they seemed fixated on getting my child to change to meet the school’s needs, rather than making changes to the way they did things with my child in order to suit their learning profile.

Often my child would be present in a lesson, but de facto excluded from it, because the information was presented in a way, or under conditions, that made it difficult for them to process it.

Because of this, when the time came for Freddie, who has Down’s Syndrome (with associated learning difficulties and developmental delay), to start school I felt physically sick at the thought of sending him, especially once it became clear that, for a variety of reasons, our local mainstream primary schools would struggle to meet his needs and the maximum level of support on offer from the L.A. was inadequate.

The two schools nearest to us made it clear, in not so many words, that they really did not want to have to accommodate him.

Of course, they were legally obliged to, and if I had insisted they would have had no choice.

But in the light of my previous experiences I chose not to.

Instead I enrolled him in a nearby Special School. It had a good reputation, good links to the wider community, and a really nice atmosphere. Happily, it turned out to be a very good decision.

Here was a school that was already equipped to give Freddie all the support he needed without me having to beg or fight the L.A. for it; and whose staff already had a close working relationship with many of the professionals we were involved with. Here was a whole school-full of teachers who ‘got it’.

They don’t see my son as a ‘problem’, but simply as a child to be educated. They don’t view me as an adversary, but as a potential ally with a common aim.

They understand that my child might learn best if taught in a particular way, and are open-minded and creative in coming up with strategies to help him; they see his strengths and teach to them, and know how to utilise them to help with his areas of difficulty.

They understand that behaviour is a form of communication, not a manifestation of a naughty or malicious personality. They take a positive, constructive approach to encouraging ‘good’ or desirable behaviour.

Here are teachers who are both willing and able to support us with things like eating and toileting, issues that many SEND families struggle with, but which teachers are not usually required to get involved in.

Here are teachers who have spent many years teaching children with special needs and disabilities and have acquired a wealth of knowledge and experience in that particular field.

I have taken some flack for my decision to place Freddie in a Special School.

I have been accused of giving up on him, of not wanting the best for him, even of wanting to segregate him from society out of shame.

I won’t tell you what I think of nonsense like that. Instead, I will ask you to consider this:

If you, or a member of your family was ill, and your G.P. could not provide the answers, or the care, or treatment that you needed, you would glad, would you not, if they referred you to a specialist, a doctor with additional training in a particular field, and experience in dealing with the sort of complex and difficult cases that a general practitioner only rarely encounters.

Indeed, you would probably expect them to refer you on, and demand it if they did not do so.

You would not complain that they were giving up on you, or that they did not want the best treatment for you.

You would not accuse them of shovelling you off to hospital in order to hide you away, or segregate you from society.

We do not view specialist doctors and consultants as second best, not quite good enough to make the cut in general medicine.

We see them for what they are – experts in their chosen field.

So why don’t we view specialist educators in the same way?

So, on Teacher’s Day let’s applaud the Special Needs teachers: people who have chosen to enter an arm of the profession that is so often viewed by the public as ‘less than’.

These dedicated professionals work with some of the most vulnerable, complex, and educationally disadvantaged children, and strive to give them the best education possible: one that is appropriate and accessible to each individual pupil, tailored to their needs.

And let’s accord them their proper title: Specialist Teachers.

Post script: One of my older child’s mainstream teachers who had previously worked in a Special School told me that they believed the experience had made them a better teacher.

I think there’s a lesson in that.