How Special is, ‘Special’?

He is in the process of toilet training.

He rarely, if ever, needs changing while we are out, but he does need to be taken to the toilet – which presents me with a dilemma.

Are we entitled to use accessible or ‘disabled’ toilets, or not?

It is difficult with the buggy to use the standard cubicles in the ladies toilets, especially if I also need to go.

Although baby-change cubicles are big enough to accommodate the buggy, Freddie is not a baby, and not all have a toilet.

When I do find one that does, I often get dirty looks for having occupied it when my child is obviously neither a baby nor toddler.

I also get dirty looks when using the ‘disabled’ toilet, too – from those who just see a woman with a child in a buggy.

To be honest, I’m not sure which cubicle we belong in generally, in life.

My son has Down’s Syndrome, with associated developmental delay and learning disability.

He has a Statement of Special Educational Need and goes to a dedicated special needs school. His behaviour is sometimes unusually challenging.

On the other hand, he can walk, and talk, and feed himself.

He is gradually learning to do most of the things that typical children do, albeit at a much slower pace.

He doesn’t (touch wood) suffer frequent bouts of ill-health.

He has never (touch wood, again) been admitted to hospital as an in-patient since he was discharged from the NICU six weeks after he was born; nor has he required surgery or other complex medical procedures so far.

We don’t need to use any specialist equipment (other than the buggy).

Parents of ‘typical’ children say things like: ‘I don’t know how you do it, I couldn’t’.

‘Special needs’ parents seem to say: ‘You don’t know you’re born, we have it way worse than you’.

Each community thinks we belong in the other.

Neither really accepts us.

It was even worse with  our elder son (who has Asperger’s) – we were patently not quite ‘typical’, but not atypical enough to qualify for any specialist help or support.

We had to fend for ourselves as best we could in a strange and lonely wilderness.

It is like we have fallen down a crack in the pavement between the two, into some strange nether world that only we inhabit; outcasts with no tribe to call on for help when we meet with monsters.

Special Needs Parenting: Passing the Test

This isn’t a scene from a novel about a dystopian future world. It is a scene from my own life, seven years ago.

OK, it’s couched in rather melodramatic terms, but the basic sentiment portrayed is one I genuinely felt at the time.

My fear was that if, at my twenty-week scan, any evidence was seen that suggested my baby had Down’s Syndrome, I would be coerced into having an abortion.

It really felt like that could happen.

I’d already been pressurised into having a nuchal scan that I didn’t want.

When that revealed a 1-in-12 chance that my baby would have Down’s I was told that I would have to undergo an amniocentesis.

I wasn’t offered any information on the condition, or any other support.

I refused.

My midwife was taken aback, and assuming my decision was prompted by a fear of miscarrying a healthy baby as a result of the procedure, she said that she would arrange for my twenty-week scan to be performed by a consultant, who would conduct a thorough examination which should detect any of the, ‘soft markers’, that betrayed abnormality.

Then, if any were found, it would still be possible to terminate.

She just couldn’t get her head around the idea that I would want to continue the pregnancy regardless.

This is why I read the news of a new non-invasive prenatal test for Down’s with very mixed feelings.

While I welcome the advent of a procedure which enables those who wish to test to do so without the risk of miscarriage, I am afraid that it carries another risk.

Namely, that it will be presented as a way to weed out imperfect foetuses without any risk of harming healthy or, ‘perfect’, ones.

Prenatal should be about INFORMED CHOICE, not no choice at all.

But in order for that to happen parents need to be given accurate, up-to-date information from sources who are experts not just on the factual, medical information about Down’s Syndrome, but about the realities of daily life for those with an extra chromosome.

At the moment, this is often not happening.

Expectant parents should not be relying on their obstetrician for information about Down’s, with respect, it’s not their specialty.

There are many sources of excellent information out there, but it doesn’t seem to be making it into the hands of the people who need it most urgently – those receiving a prenatal diagnosis.

We need to make this happen. But how?

Special Needs Parenting: Elephants in the Room

But in my case it is true. I am an older mother; I was already in my forties when Freddie was born. Which leaves me with an elephant in the room.

No, two elephants in fact.

The first elephant is one that a few (rude) people do occasionally point out – the ‘what-will-happen-to-him-when-you’re-gone elephant.

The second is one that no one ever mentions, even though it is a great, grey and wrinkled matriarch that sooner or later casts its shadow across every woman. It is the elephant of change.

The Change.

Yes, I know it is an issue for all ladies, but, as I am discovering, it is a particularly troublesome one for mothers of children with special needs.

Take my own case. Freddie is six, but developmentally he is still a toddler. Developmental Delay does not just mean that a child will hit the milestones later, but also that each stage of the process happens much more slowly.

Freddie gets frustrated for pretty much the same reasons as any two-to-three year old does, and his behaviour is challenging because of that.

But he’s been going through the ‘terrible twos’ for three years now, after effectively being a baby for three-and-a-half.

Any parent will tell you that the baby and toddler stage can be physically and mentally draining.

We special needs parents have added emotional stressors too. We have been going through this most demanding phase of childhood for an extended period, at a time when my resources are at their lowest ever ebb.

In a few short months I have gone from being someone who thought nothing of walking for a brisk hour to get to town, and then trotting up six flights of stairs to her tutor’s office, to being a woman who barely has the energy for a ten-minute stroll to the corner shop.

At night I am restless and burning, and by the time Freddie wakes me up I am even more exhausted than when I went to bed.

He can be uncooperative when it comes to the necessary routines of the day; playing or reading is far more interesting than going to the toilet or having a wash.

Often the only way to get him to the bathroom is to carry him there, squirming in protest. When I do, every joint below my shoulders nags me painfully. During the day I am so physically shattered that I could sleep on a washing line.

My brain is so tired that the thought of planning a meal that Freddie can manage, and everyone else is prepared to eat, seems like an insurmountable challenge.

I have lost count of the times I have served up beans on toast recently.

But even warming a can of Heinz and singeing some bread becomes a major task when undertaken alongside the supervision of Freddie – prompting him to think about whether he needs the toilet, then taking him, wiping his nose, preventing him from eating the tissue, or nibbling the corners off books, and retrieving him from various places where he gets ‘stuck’ (purely for dramatic effect).

My formerly pre-menstrual headaches now strike randomly, bringing with them nausea and a mental stiffness so acute that I struggle to recall even commonplace words.

I cannot plan around them anymore, because they no longer conform to their accustomed pattern.

The only painkillers that worked are now forbidden to me because they clash with the medication I take for the horrendous mood swings that almost saw me single again.

Poor Freddie must have been so confused by my inconsistency; it is no wonder his behaviour deteriorated. I think it is time to start taking the advice that all special needs parents give to one another, but ignore themselves: take care of yourself.

So, if you’ll excuse me, I’m off to do some research into the menopause.

I need to find ways to stay as well as possible for as long as possible – so that I can put off tackling that first elephant for a little while yet.

Special Needs Holidays and Travelling: My Top Tips for Holidays and Days Out

1. Stop listening: to people who try to tell you that you can’t go on holiday when you have a child with special needs

What do they know?

Most of them have never had to try.

You know best what is possible for your family.

Take it from me – you can and should have a holiday.

You deserve one.

You just might have to do things a little differently.

There are organizations which specialise in adaptive holidays for families/individuals with disabilities, but they aren’t necessary for everyone, it depends on your child’s specific needs.

2. Throw away the ‘rule book’: and any preconceived notions that you may have

Think about what ‘holiday’ actually means – ‘an extended period of recreation, usually away from home: a break.

In other words, spending time relaxing, doing enjoyable things, and making memories.

Apart from that there are no set elements to what constitutes a ‘holiday’.

Now you’re ready for the next step:

3. Do whatever works for you

My parents once tried to tell us that a three-day city break in London was completely inappropriate for our children; the only suitable holiday for them would be a week at the seaside.

It was Easter – too cold for the English Coast.

Going abroad was out of the question then, as was being away from home for more than a couple days, as our eldest son struggled to cope outside of his familiar surroundings and routine.

So we ignored my parents … and had a fantastic time.

Three-day city breaks became a regular thing for us, always spent in a Premier Inn, because they all look pretty much the same and our son knew what to expect.

4. Play by ‘Australian Rules’

What I mean by this is don’t be too reticent about having to do things a little differently in order to make things work for your family (within reason).

This is where your thick skin will come in handy, as we special needs parents so often have to do things which seem counter intuitive, or just odd, to other people.

This may include, but is not limited to:

– Brazenly taking your own food in an electric coolbox if your child will only eat certain things.

– Rearranging the furniture in hotel rooms if necessary. In family rooms with a truckle bed we used to push the truckle under the dressing table to make a little ‘den’ for our eldest son to sleep in. It made him feel safer.

– Asking for music in restaurants to be turned down. We’ve done this, and when we explained why, one place even pointed out a cool, quiet space we could use as a refuge if need be.

– Taking your own (portable) toilet seat for your child to use.

5. Don’t assume the ‘posher’ places won’t welcome you

Many such places pride themselves on their standards of customer service and will bend over backwards to accommodate their guests’ needs.

In one upmarket hotel not only was Freddie treated like a little prince, but, seeing our special needs buggy, they unhesitatingly offered to change our room immediately if the steps would be a problem for us.

Happy Holidays!

Why I Chose to Put My Son in Special School

A lady, noticing him, struck up a conversation with me, explaining that she had an eight-month-old grandchild with Down’s Syndrome.

She told me how well the little one was doing; how, now that mum was back at work, they went to an ordinary nursery.

She also told me, enthusiastically, about the family’s plans to enrol the child in their local mainstream Primary school.

I told her about the nurseries Freddie had attended, one of which was a dedicated special needs nursery.

She shot me a stormy look.

No, no, no!’ she shouted. ‘I don’t agree with that at all. They should be educated with everybody else!

Before I could reply the nurse came out and called the lady in for her appointment. Clearly that lady was under the misapprehension that Special school is about segregation.

It’s not.

It’s about appropriate education.

Freddie has a Statement of Special Educational Need.

It states that he requires twenty-five hours of additional one-to-one support a week – out of a school week of approximately thirty hours.

That’s a lot.

But it’s not the whole day.

There would still be at least one hour a day when he would be without additional support.

When would that hour be?

When he started school Freddie was still struggling to self-feed, and to chew and swallow some foods.

He needed help and supervision not only to ensure that he ate, but to ensure that he did not choke.

He still has no sense of danger and is an enthusiastic absconder.

He needs supervision at all times, including play times, to keep him safe.

Freddie wasn’t toilet-trained when he began school, because he wasn’t physically ready to be.

He needed someone not only to clean and change him, but to be able to help him learn in a way that he could cope with.

It was explained to me that if he went to mainstream school his support would come from either a teaching assistant with no specialist training, or, worse still, one of the mums, who just needed to earn some extra money.

The District SENCO told me, unofficially, that neither of the Primary schools in our catchment area would be satisfactory in meeting his needs, because neither really fully embraced the idea of inclusion.

Within (brisk) walking distance of where I live, though, is the local Community Special School.

Here, the staff are very experienced at educating, and caring for, children with a wide variety of physical, intellectual, emotional and behavioural issues and needs.

Here, Freddie would follow a curriculum based on the National Curriculum, but differentiated to meet his needs, to ensure that he could access it effectively.

They also focus on helping the children to develop their self-help, social, emotional and play skills.

They support the children in learning to follow rules and routines.

They have a toileting programme.

There are currently eight children in his class and three staff.

Freddie’s learning needs fall outside the mainstream.

That’s why they are referred to as ‘special’.

And that’s why mainstream school is not appropriate for him.

Special Needs Parenting: The Judgement of Strangers

It has never happened to me.

Then, one day, I experienced a revelation, a small moment of epiphany which threw a rather unexpected light on the matter.

It happened on the road to the check-in desk at Manchester Airport.

Myself, Daddy, Big Sister and Freddie were part of a long and winding queue of people and baggage that moved with glacial slowness across the departure hall.

It was an adventure for Freddie, who had never been to an airport before, but he was surprisingly content to sit in his buggy, munching raisins and watching the world go by (probably because it was stupid o’clock in the morning and he wasn’t quite fully charged yet).

This gave me rare leisure to take full notice of what was going on around me – it was a long time since I’d last been in an airport, so it was a novel experience for me, too.

After a while I realised that a particular woman was gazing very intently at us.

At first I told myself I must be mistaken.

But no, she was definitely staring.

Then I realised something else – that I had absolutely no feelings whatsoever about it.

It was just a fact that I had noted but had no particular interest in, like the fact that she had grey hair and a pink jacket.

I was completely at peace.

Maybe she wasn’t aware that she was staring.

Maybe she was just curious.

Perhaps she imagined that babies with Down’s Syndrome weren’t being born anymore because ‘there’s a test for that, nowadays.’

(My answer to that: the test is not compulsory, and neither is termination in the event of a positive result.)

Did she think I was misguided, trying to take a ‘disabled’ child on holiday?

(Excuse me, but I think I know best what is, and is not, feasible for my family. I live this life day-in-day-out, you do not.)

Was she inwardly hoping that we weren’t on the same flight, expecting that Freddie would be disruptive?

(Do I look like a novice? See that monkey-shaped bag – it’s crammed with toys, gadgets and snacks. He even has his own portable toilet seat. Your loud jewellery is more likely to disturb people than he is.)

Freddie wasn’t acting up, so it didn’t seem likely she was about to give me a piece of her mind.

My response to anyone criticising my parenting skills is this: ‘are you an expert on raising children with Aperger’s/Down’s, because if you are I would be glad to hear any advice you can give me. But if not, might I respectfully suggest you keep your opinions to yourself.’

I have been a special needs parent for a long time now.

It has made me resourceful and resilient, and given me confidence in my abilities as a parent.

It didn’t matter what she threw at me, there isn’t much I can’t handle.

It was a liberating, empowering moment.

If I don’t care what people think, then they don’t have the power to make me feel bad.

They don’t have the power to make me feel that I need to apologise for bringing my children into the world, or taking them out into it; or for sometimes needing to do things differently to everyone else.

My children have a place in this world that they are entitled to, without apology.

Maybe we have been the subject of stares and comments, but I just haven’t noticed, because I just don’t care what other people’s opinion is of our situation.

Perhaps I should care more, after all, ignorant prejudice will hold our children back far more than any disability or condition.

But for now, not caring is the right thing for me, because it means that I have no inhibitions about living life the way we need to live it, about introducing Freddie to the world, and the world to Freddie.

I hope that in our small way we can demonstrate that, in many ways, we are all more alike than different.

Special Needs Parenting: A Date with Ourselves

Quite unexpectedly a message appeared on my calendar app, inviting me to accompany a certain man of my acquaintance to a theme park.

I clicked ‘confirm’, and the date has been duly logged on my phone.

I’m nervous.

I hate heights. I hate being spun around and turned upside down. A theme park is going to push me right outside my comfort zone.

But I don’t want to be a kill-joy. I’m not too worried, though.

You see, the man I am going on this date with is my husband of nearly twenty years.

He’s seen me at my worst and at my best.

He’ll know if I really can’t handle something and won’t try to force me into it. It was exciting to get the sudden invite to do a thing more usually associated with being young, or a courting couple.

We didn’t know each other as teenagers.

By the time we met, in our mid-twenties, we had already taken our places in the sensible adult world; life was all about being responsible and setting ourselves up for the future. A future we couldn’t see.

It never crossed our minds that disability and ‘special needs’ would be part of the picture.

We are more responsible now than we ever imagined we would have to be. When Freddie was born, Daddy was studying for a degree as well as working full-time.

I was responsible for the majority of Freddie’s care, all the medical and therapy appointments, and our two other children.

We came to terms with Freddie’s diagnosis whilst also juggling a house move, the threat of redundancy and the additional needs of one of our older children.

It frayed the bond between us to the breaking point.

We were becoming strangers to one another.

We shared a house and children, but nothing else. The tremendous external pressures on our marriage almost had us beat.

Then we started to fight back. It began with a new bathroom. The bath looked huge. We speculated that it might even be big enough to hold both of us at one end.

Once Freddie was in bed we decided to find out.

It felt a little … mischievous … locking the door, filling the tub (with the plastic cover still on) and hopping in, trying not to splash the bare plaster wall.

Daddy put some music on, on his phone: stuff from the eighties, when we would’ve been in High School. Although we didn’t know each other then we listened to the same music.

We got talking about that. Then the conversation rolled on to something else … then something else … then something else … until we noticed that the water had become cold and soupy.

It was like when you go on a date, and by the end of the evening, it feels like you’ve known each other for years.

Except that we really have.

I don’t remember what we said, but I do remember the feeling – that neither of us wants to be single, neither of us wants to be separated from our children, and neither of us wants to throw away twenty-odd years of mutual history.

We are each other’s best chance of a happy future.

We can’t turn back the clock and start again from the beginning. But we can revisit our younger selves, remember who we were, and get to know each other again, as we are now.

Hopefully, we’ll both like what we find.

Why I Never Grieved Over My Child’s Diagnosis

Many parents will tell you that when they found out that their son or daughter had a disability or additional needs they too went through a process of grieving; grieving for the loss of the hopes and expectations they had for their child, and for their own life.

This is perfectly understandable; perfectly natural.

When we try to imagine our future, we all hold certain assumptions about how our lives will pan out.  These are usually based on the kind of lives lead by our families, friends and peers, though we may dream of achieving something different, something better.

When it comes to picturing our future children, the babies we see in our mind’s eye are regular, typically-developing, cherubs (just a bit cuter and more talented than other people’s, of course).

They reach all the milestones right on cue, they grow up and become independent, they have the kind of careers we could only dream of, and they give us grandchildren (but not until we’re ready).

For those parents who have a healthy child who falls victim to some devastating disease or accident the grief must be especially sharp and poignant.  For them ‘what might have been’ was once reality.  Their hopes were, at one time, tangibly within reach.

But when I was told that Freddie has Down’s Syndrome I did not experience this reaction.

I can honestly say, hand on heart, that I have never felt a single pang of regret for the boy he might have been.

Not once have I felt that we were cheated of the future he should have had. This is not because I am the sort of placid, saintly, or martyr-esque person who simply bows her head and willingly accepts every circumstance without question.

This is not because I had come to terms with it before he was born – having found out in early pregnancy that the chances of my baby being born with Down’s were very high.

I think this is because Down’s Syndrome is a condition that occurs at the moment of conception.

The extra chromosomal material that causes it is knitted into the fabric of every single cell, and always has been from the very first spark of life. Down’s Syndrome is as much a part of my child as the blue eyes he inherited from his father and me.

There is no Freddie without Down’s Syndrome.

The life, and the future, he has is the only one he ever could have had.

Why my Dad is a Superdad, by Freddie

He puts up with all my shouting, even though he hates loud noises.

Even though he is easily embarrassed, he read me a story on a crowded bus, so I wouldn’t get bored and fidgety. He took a week off work to look after me last half term (mum has gone back to University).

On the first day I was ill, so he took me to the doctor, gave me my medicine, rubbed cream on my rashy face, and to tempt me to eat he ‘forgot’ his dislike of fast food and took me to the Drive-thru. And he let me eat it in the car (don’t tell the others, they’re not allowed to).

He has always worked hard, so that my Mum could stay at home to look after us.

When I was born he knew Mummy would be needed at home more than ever, so he went to University as well as working full-time, so that if he ever lost his job there was a better chance that he would get another one. Even when the going gets tough, and he and Mummy go through a ‘bad patch’, he never gives up.

He tries very hard to make things right again.

But the real reason my Dad is a Superdad is because he does all this despite having had no example to follow.

You see, my Dad grew up without a father. He has no memory of him; the only thing my Dad knows about his Dad is that he left his family.

When my big brother came along, my Dad didn’t know how to be a father.

He knew it must a Very Important Job because of the size of the hole his own father left behind when he went. But what my Dad did know is that he wanted to be a presence in his child’s life, not an absence.

The rest he just had to make up as he went along. It would have been easy to fall into simply being a Provider, since one of the biggest legacies of his own lack of a father had been lack of money, and after all, he had no blueprint to show him what the day-to-day role of ‘father’ was meant to be.

Perhaps because he had no preconceived expectations of fatherhood it was easier for him to adapt to being a ‘special needs’ Dad.

Perhaps having no fixed idea of what a Dad was supposed to do made him better able to respond to what we each, individually, needed him to be.

And that’s no easy task: my big brother has Aperger’s Syndrome, he’s a bit socially awkward, and fiercely intelligent.

I have Down’s Syndrome, with associated developmental delay and learning difficulties, and my big sister is ‘typically developing’ (or a ‘typical woman’, as my Dad would say. Let me tell you, if she’s typical I’m staying right away from women).

Our individual needs differ widely; parenting is a complex business in our house.

But my Dad is a Superdad—because he knows that, special needs or not, the one thing that we all need from him is … him.

Not perfect, but PRESENT.