I have family living in different countries and spread throughout Britain so one of the ways they like to know what to buy the children is by having an Amazon wish list.

You would think that almost eight-year-old twins would be in their absolute element at the thought of getting to make their very own Amazon wish list.

The volume of toys, books, clothes and games available would excite almost any child.

Except my son has no idea at all.

He has no idea what a birthday is.

He has no idea people want to buy him new things.

He has no concept of a party.

He can not blow candles out on a birthday cake.

And he most definitely has no idea at all what Amazon even is let alone a wish list.

So I find myself on the site and decide to start with toys. I type in toys for 8-year-old boys: Lego, remote control cars, sports toys and games and science related toys.

If I ever needed to face reality that does it right there. Not one of those items is in any way suitable.

So I change tactic and think about characters.

He has no idea who super man is, or Ben10, or sky landers or Dr Who.

These, apparently, are what boys his age like?

My son is different.

At eight he likes Teletubbies, Bing Bunny and Peppa Pig.

I know there are cuddly toys of those he will put in a bag and carry around or chew.

He loves nothing more than to have a good chew at a favourite character he likes from the television.

So, I decide to add in a cuddle toy and ignore the fact that they are aimed at toddlers.

Then comes the inevitable, ‘Other people who bought this item also bought…’

..and here the website decides to show me many more toys along the same vein…plastic figures and baby and toddler toys all aimed at the under three market.

I decide to ignore the critics and add a few of those in too.

He might play with them and they make noises and light up which is right up his street.

Then I have a wonderful, or so I thought, idea!

As I see pyjamas and t-shirts pop up I think how excited he would be to see his favourite Bing Bunny character on a top or nightwear.

Much to my disappointment there is nothing in his size.

He is an average sized eight-year-old but yet I know of tall four-year-olds of a similar build.

But apparently only small children are allowed to like pre-school characters which is really sad.

Nothing I can add there then.

Clothes lead me to shoes.

He is almost in adult sizes now but still needs support to put shoes on and can only manage Velcro fasteners with support.

They are increasingly difficult to find in adult sizes and again there are no characters he would understand and he has zero brand awareness.

No point adding trainers to his list.

I have two cuddly toys and two toddler toys. This is not going well.

I finally decide that this is HIS list and focus on what HE likes.

I add some sensory toys, some bath toys and a couple of books and DVDs.

My final list is more like what an eighteen-month-old would appreciate than an eight year old.

Some of the family may be shocked and disappointed that yet again he has baby toys on his list.

This is the reality of a child with severe autism and global developmental delay.

Next year’s list is likely to be much of the same again.

Times like this are a brutal reminder of how different my child is.

But like any other child, whether he understands birthdays and Christmas or not, I have an opportunity to bless him with some surprises.

If any of my family chose from that list I know we are sure to see this smile…and that is why I make the list.

I made the mistake of googling toys for eight-year-olds but by making an Amazon list I can same any family and friends making the same mistake too.

After all who wants the same as any other child anyway?

When I expressed reluctance to submit to invasive testing, she mistakenly assumed that I was blindly placing my faith in the one-in-twelve chance that he didn’t have it.

She was keen to stress that I must find out for certain, because if I went ahead and it turned out that he did have it, then my life would be ruined, devastated; it would never be the same again.

Well, she was right, my life did change:

I started to get a lot of attention in the street; random people would come up to me, in one case a lady ran out of a shop after me.

Surprisingly, given what I had been led to expect, they weren’t rude, pitying or hostile.

They just wanted to talk to me about Freddie, they would admire him, talk to him, then tell me all about someone they knew, usually a family member, who had Down’s Syndrome.

These conversations were always positive and joyful.

One very elderly man’s eyes swam with tears as he stroked Freddie’s cheek and talked about, ‘our Alan’.

They were not tears for a hard and miserable life, they were tears for a beloved brother, now passed away, and much missed.

In the early days there were lots of appointments and therapies.

The combined SALT and physio session at the local Child Development Centre was like a mother-and-toddler group, but without the bitchy mum cliques that I had always found so off-putting.

Competitive mothering was replaced by mutual support and empathy.

It taught me a lot about how life should be, as opposed to how it often is these days.

Freddie attended two sessions a week at a, ‘nursery’, for children with special needs and disabilities, to give him a bit of a developmental, ‘leg-up’.

The staff, though, didn’t just work with the children for a couple of hours; it was their policy to work with and support the whole family.

I loved the place so much that I still wasn’t ready to leave when Freddie did.

So I volunteered to help in the playroom while he was at school; later, I became a Trustee (basically, she says, polishing fingernails on jumper, a company director).

The change from volunteer to Trustee came about because of another change, which meant I wasn’t available in the day anymore.

Freddie had presented me with many challenges; I had no choice other than to simply get on with it.

Much of the time it was my mental attitude that was challenged, and slowly I discovered that I was a lot stronger and smarter than anyone had given me credit for.

Over a few short years slowly and subtly metamorphosed from, ‘I can’t’, to, ‘I can’.

Others still doubt me sometimes; the difference is I no longer doubt myself.

Once Freddie was settled at school I enrolled on a university degree course (thirty years after leaving formal education at the age of 16).

I chose Creative Writing – I’ve always been a hobby writer, and made up stories in my head before I could use a pencil – because I felt instinctively that this was something I could do, and be happy doing.

It also occurred to me that if I could get some sort of formal credentials that demonstrated that I was a committed and capable writer, I might be able to work from home as a freelancer.

That way I could earn a bit of money, but always be here when Freddie needed me, too.

I graduated with a First, was awarded the prize for Outstanding Acheivement, and am now beginning to get work published: all whilst living a life that was supposedly so bleak and difficult that it was the very antithesis of personal growth and joy.

Being at university got me onto social media, a thing I’d previously resisted.

Initially I used it just to keep up with things going on in my various classes – each one had its own Facebook group – but then I started making contact with old friends.

There’s no support group for parents near to where I live, but I found groups online, and was able to build a supportive community around myself.

I started blogging, and now I’m sniffing around on the fringes of campaigning.

Neither myself nor Daddy enjoy being told what we can and can’t do, so another upshot of the often-asserted assumption that we cannot enjoy good quality of life is that we stubbornly decided we were jolly well going to!

We’d never been abroad together, as a couple: in the past we felt we couldn’t justify the expense of a week or two in the sun when there was retirement and the inevitable ‘rainy day’ to be saved for.

We suddenly realised that this mythical rainy day does not necessarily come as one huge, catastrophic storm, but often as occasional inconvenient showers, with the odd squall.

We were getting soaked in the drizzle whilst saving up to build an ark for a flood that might never come; it wouldn’t kill us to take a little of our ark fund and buy wellies and umbrellas, if the day of reckoning ever came the boat would just have fewer cushions, that’s all.

So, we’ve started taking foreign holidays.

It takes a bit more organisation and forethought, that’s true, but it’s not only do-able, it’s enjoyable. Freddie loves it. Spurred on by the need to also keep one eye on the future, though, we’ve done something else that we always wanted to do, but talked ourselves out of through lack of confidence.

We bought a property to rent out.

We’re people of modest means, we had to scrape and borrow to buy a wreck of a place, and Daddy renovated it himself evenings and weekends.

The rent paid by the tenants covers the loan, and it will be something for our children to fall back on when we’re gone.

We plan to do it again as soon as we can; we aim to get at least one house for each of our children.

The doctor was right: having Freddie DID change everything.

Having Freddie has challenged everything about the way I live and the way I think.

Having Freddie has woken me up, like the Prince woke Sleeping Beauty. When I chose to have Freddie, I really did choose LIFE.

Those of us that are, will probably know that pregnancy and infant loss awareness week is coming up and is held annually from 9th – 15th October.

I remember discovering this as I miscarried on 27 September 2013 and the following week I thought it was apt that I should see so many reminders of miscarriage on Facebook.

Whilst some people might find these memes too sob story or self-indulgent, they remind women who have experienced miscarriage that they are not alone, when the experience can make you feel like you have never been more alone.

I miscarried at 8+5. I don’t know why, but I always say 9 weeks as though the added day or 2 will somehow make it sound as significant as it felt at the time.

But I’ve never really discussed it with anyone other than those who knew I was pregnant, which wasn’t many.

I suppose in many ways because I know a lot of people have multiple miscarriages or lose a baby later on in pregnancy. And I can only imagine how hard this is in comparison to my experience. It’s just awful.

I hate the thought of anyone thinking I am somehow comparing my loss to theirs.

I also wonder whether the loss at 8+5 just sounds trivial when said out loud. Even though it wasn’t to me or my other half. I would hate for anyone to think I was talking about it to seek attention.

Even as I type this I am unsure whether I should share my thoughts because it just feels like something I shouldn’t talk about.

The experience will always stay with me and I know lots of other women feel the same. And the sad thing is, there is a woman going through this right now that will really need to talk about it, but won’t.

We all need to vent and talk about the shit things that happen in life. It’s the best kind of therapy. It’s normal to grieve and feel sad, even if you do feel like you just have to get on with it.

And to some extent, it’s comforting to know 1 in 4 women can relate to how you feel.

I fell pregnant quickly – it was the second time round and I somewhat naively didn’t have the same worries that I did when I was pregnant with my first, Brody. I felt like it was meant to be. Both of my sister-in-laws were pregnant. We had just bought a bigger house.

The timing felt right and I felt like things were going our way.

Miscarriage took me by surprise.

Like others, I had the stomach sinking experience of going to the toilet and noticing blood when wiping.

When I later fell pregnant with our daughter, toilet trips were a source of anxiety.

In that moment, up until the very end, I felt sick, full of anxiety and desperate for it not to be happening to me.

We were moving house the next day (brilliant timing, not that there is ever a good time) and when I called the hospital they just told me to phone in the morning if there was any more blood.

I didn’t feel reassured.

I just felt completely helpless and alone.

The next day was a bank holiday (perfect) and we needed to get all of our stuff out of storage before it closed at midday and collect the keys to our house.

My wonderfully sympathetic GP managed to get me an appointment at the hospital and my best friend came along with me to hold my hand (quite literally – forever grateful).

On the way there, I just knew the pregnancy had ended, despite reassurances about bleeding being common.

I felt like I couldn’t stand up – without going into any more detail.

It was horrible.

We went to a room where I was scanned and finally the sonographer uttered those words, “No heartbeat”.

Literally minutes later I had what they refer to as a, ‘complete miscarriage’.

We were taken in to a small room with white walls and leaflets where we sat for hours until a kind woman came in and asked me if I wanted to take my loss home in a pot or if I’d prefer for it to be taken to a place at the crematorium, where there is apparently a plaque for women like me.

I didn’t expect this. At all.

Neither did my best friend.

We cried, I signed a piece of paper and an uncomfortable trip to gynaecology followed.

And then we left. That was it. Emptiness.

I was no longer pregnant. There was no May baby.

My only reminder was a trip back to the hospital at 6.00am a few days later when, to add insult to injury, I developed endometritis in my womb.

I sometimes regret not asking for the scan picture, even though I don’t know what I would have done with it in reality.

Maybe that’s morbid, but I do.

I didn’t want to hear anyone say, “Everything happens for a reason”, “It’ll happen again,” or, “it wasn’t your time”. Sometimes, you just need someone to say, “This is really hard,” and give you a hug.

Because, sometimes, life is hard.

There are photos this week that are popping up on my Facebook, “On this day”, that just bring that week back to me.

One of them is a photo of my son Brody looking up at me from underneath my parent’s kitchen chair.

I remember feeling overwhelmed with sadness that day but looking at him I knew how lucky I was to have him.

And I am.

He was just what I needed.

But you know I won’t ever forget that day. And I know I’m not alone.

*1 in 4 pregnancies ends in miscarriage (Tommy’s)

Those were the schools that seemed different.

The children were transported in to them, often travelling many miles, and the parents stayed away.

Communication was mostly through written format in communication diaries and they never had a school tie.

I kind of saw them as pretty sad places full of children who were lost in the system, who would never sit exams or live independently and who had very complex needs.

As students none of us inspired to work in one so no-one questioned why there were no placements in them during our years of studying.

We had the odd lecture on, ‘Additional Support Needs’, and that was kind of as far as it went.

It was assumed we wanted to teach children who wanted to learn , had a bright further and for whom we could make a huge difference too.

In fact all of those are equally true of children in a special educational setting too! I just never realised that until many years later.

I am now the proud parent of a child who attends a special needs school. For those of you who do not have the privilege of getting to see inside one of these schools or who are perhaps wondering if such a school is right for your child let me tell you what a special needs school, or school for those with complex support needs is actually like.

Firstly, they are very happy places. 

The children (and staff) have challenges but everytime I go into my sons school there are staff smiling, laughing, even dancing! The children giggle, play and have so much fun.

The children learn. 

So many people seem to view special education as simply babysitting complex children until the day they enter adult services and receive care in the community. Despite having children with significant learning difficulties these schools still follow the national curriculum, the children still do work and progress is still made.

Your child will be respected and looked after.

Support staff go above and beyond. They do tasks that many others would not wish to do like see to personal needs of children. They feed children through tubes, feed others by spoon and change nappies. They wipe faces, give hand over hand support and lie on the floor with children to comfort them. There is nothing too much for them and they get to know your child quickly.

Your child will be celebrated.

I am not sure what I thought would go on when my son began special education four years ago but I never really thought he would come home, like his mainstream sister, with awards for things like star of the week or head teachers award! With small classes and inventive teaching strategies your child will be celebrated for the smallest of things they achieve.

At one school assembly my child was involved in, I remember another child receiving star of the week for ‘opening his eyes’. That, I remember thinking, was something major to celebrate for that family and put my problems right into perspective.

They have a typical school day like any other school.

My son has play time, lunch time, PE, religious education and science like any other school. The means by which these are carried out may be different; more practical or more supported, but they are all done just like any other school. He has school trips, assembly, Christmas parties and every year there is a Christmas show.

They are part of the community just like any other school. 

My son schools has a choir (some sign as they are non verbal) and every year they go to different places in the community to perform. The children go for walks in the community and they are often in local shops or the library or out on trips. They are not isolated or shut inside in any way.

The school may physically be in a different town to where many of the children live but within the town the school is pupils are seen and part of the community. The children have photos taken when they raise money for things or when they go to local sports events. Many of the schools are now linked closely (in my sons case a joint campus) to a mainstream school and  the children work together on things. It is beautiful.

Children who attend special needs schools DO have a bright future.

At a recent parents’ evening for my son it was briefly mentioned that within a few years we will need to start looking at high school provision. While much of this process will be out with our hands (the education authority will decide) and there are a few ‘feeder’ high schools for his school it is not impossible for a child to go into mainstream education from a special needs school.

In fact I know of a few children who have moved from my sons school to other schools as they have excelled so much in the special needs setting and are now able to access a more mainstream education.

For my son it is likely he will require specialist support even as an adult but the right education now still allows him to have a bright future, and a level of independence he might never have been able to achieve had he not had the intensive learning environment of his special needs school.

As a student I truly wish I had had the opportunity years ago to see into these magical places society calls special needs schools.

There is a high chance my heart would have been stolen by them long before I ever had a child attend one.

What are special needs schools really like:

They are magical, beautiful, colourful, cheerful places full of the most incredible staff and adorable children who stretch your mind and your heart to see potential and love beyond what you ever thought imaginable.

The advice ranged from what therapies to do, what support groups I should attend, how I should alter her diet now she has autism and surprisingly a lot of people suddenly suggested we should get her a pet.

That last one was never our immediate priority but I let it sit there buried in the back of my mind and often mulled it over.

When I was a child my family had a dog, and a cat and I even remember us having some goldfish until my dad accidentally killed them.

Prior to having children my husband and myself had several dogs whom we loved very much.

By the time the children were a year old both had passed away and in the business of raising twins we never felt it would be right to add another pet into the mix.

This all changed fairly recently when my husband was diagnosed with depression and he was advised to take up a hobby.

As we sat and talked about previous things he had enjoyed and spoke about the past, we both remembered the joy we once had early on in our marriage when we kept tropical fish.

All of a sudden my mind jumped once again to the thought of pets helping my daughter.

We decided the best place for a fish tank might be our daughter’s bedroom.

And so it began.

We put the suggestion to her and showed her images on Google.

We visited aquariums and pet shops and talked about all that was involved.

We bought the tank, the filter and gravel.

And this is when her first lesson in life started.

1. Sometimes, in life, we can’t hurry things.

Water takes time to settle.

We had to test the levels of different chemicals and allow the tank to ”mature” before rushing out to add ornaments and fish.

There are areas of development that my daughter struggles with having autism and I talked to her about how sometimes everything does need to be, ‘just right’, before she can master skills her peers take for granted like bike riding, scoring goals, difficult spelling words and so on.

When she recently got a word wrong in a spelling test instead of becoming very upset she said she just needed a little more time, like her fish tank, to be perfect.

2. Being around the right people is so important.

When we finally got around to adding the all important fish we talked about how some types of wish work well together and some don’t.

Some fish need others for company and some are fine on their own.

A good mix is vital for a healthy tank just like a good mix of people helps us all thrive.

As a child who really struggles socially this helped her understand that she doesn’t need to like everyone in her class but she can be around them without being overly anxious.

She likes one thing, others like something else just like some fish like exploring while others prefer the bottom of the tank.

Seeing it in real life in her tank really helped her understand.

3. Eating the same stuff is OK but we must eat regularly.

My daughter has major issues with food.

She has a pretty typical autism diet of mainly beige items so the fact her fish predominantly ate the same flakes day in and day out helped her understand that sometimes this is OK.

However, she would also easily go days without eating every time anything stressed her.

By explaining that her fish had to be fed twice a day and forming a routine for this she also established her own eating routine alongside them which has helped us in getting her up to an acceptable weight when before she kept losing weight.

4. Things can look good but that does not mean all is OK.

Sometimes we would look at her tank and she would remark how clean it was and how beautiful the fish were but yet when we tested the water it was clear the tank needed a water change or a little tweaking.

Sometimes difficulties are not noticeable to others but that does not mean they don’t exist.

My smart little girl immediately worked out this was the same with her autism.

People look at her as beautiful and smart (which she is) and don’t always see her anxiety until it is too late.

5. Being different is beautiful.

We have a right mix of fish now including mollies, sword tails, neon tetras, Angel fish, weather loach and guppies and each brings colour, peace, adventure, tranquillity and enjoyment that simply having a tank full of the same breed would not bring.

Variety helps brighten it and keep it clean and each fish is unique in it’s own way.

None of the fish strive in any way to be like another one and each is confident in it’s own right; exactly the way I want my daughter to be.

Some love dogs, others love cats.

We are gaining so much just from having a simple tank of fish.

They say pets are good for children with autism but I never expected a simple fish tank to help my daughter so much.

My son Brody can’t use a toilet and is still in nappies. At 4 years old he is far too big for a baby changing table.

But what’s the alternative?

The toilet floor.

Our car boot.

Going home.

And sadly, we share this dilemma with thousands of other families.

I started campaigning for Changing Places and Space To Change toilets earlier this year, after starting a bigger nappy campaign. I wrote a blog about the issue, which was front page of Mumsnet Bloggers Network and blog of the day on Tots 100.

It appeared on several sites and had thousands of shares. But I’m not telling you this to blow my own trumpet. Not in the slightest. Because trust me, the notes on that trumpet would be completely flat. It really made no difference. What so ever.

For a brief moment I naively thought that perhaps it would help sway some minds. Don’t get me wrong, I didn’t think a simple blog would change the world, but I had thought when starting out campaigning that surely it would be simple to change opinion and perhaps get this issue in the media.

I mean this issue is huge and its 2016!

Surely equality and accessibility is championed these days.

But I was so wrong. And boy do I feel foolish.

I really don’t understand why this issue isn’t newsworthy.

It’s actually quite depressing how little the world cares about accessibility and accessible toilets. There are so many campaigners doing all that they can to encourage and promote Changing Places and Space To Change facilities. They write amazing blogs and articles, they contact businesses near and afar and they shout – constantly – from the rooftops of Facebook and Twitter.

They are a collective force but sadly for some reason it isn’t enough to put an end to this problem. Get the movers and shakers to actually take notice.

Campaigners do all of the things that you could imagine and more. From tweeting celebs who might be able to raise the profile on this issue, like Katie Price (sadly, she’s not listening), to starting petitions that attract thousands of signatures. You name it; they’ve no doubt tried it – at least once.

Every time there is a toilet based issue in the news, campaigners jump on it.

Last week, This Morning did a piece on whether or not it was acceptable for parents to allow their child to use a potty in a restaurant. Regardless of whether this is right or wrong, we took the opportunity to bombard the comments section with why it is unacceptable for disabled children and adults to have no adequate toilet facilities.

We do this kind of thing all.the.time. And we rarely get noticed. If we do, it’s no doubt by our Facebook friends who are unaffected by the issue and who quite possibly roll their eyes us whilst muttering “give it up!”

But we can’t give up. This is very much our reality. And we need the world to change.

We do this for our loved ones because it’s an appalling position for them to be in. And they don’t have the voice to shout about the injustice of it all. As their parents and carers you better believe we will fight for them – and for others too.

This isn’t right. It’s not fair.

How is it okay for society to think that it’s acceptable for me to change Brody on a toilet floor covered in over 77,000 germs?

Maybe some people agree that it isn’t, but it doesn’t affect them so they carry on with an out of sight, out of mind attitude. Maybe it’s because there is a (relatively small in the grand scheme of things) financial cost to my sons needs and he isn’t worth that much to them.

Campaigning is an uphill battle and I am so grateful to everyone who takes the time to do it.

To my campaigning friends – thank you.

To everyone who campaigns – thank you.

It’s so sad that this – a basic human right and something people should be able to do with dignity – is something we actually have to fight for.

If you are reading this please help us campaign. There are so many ways that you can. You can sign this petition. You can share this blog or any other blogs that you read about accessible disabled toilets. You can tell businesses about this problem and ask them to consider installing these facilities – there is never any harm in asking! Maybe you will make all the difference.

Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have (Margaret Mead). 

For more information about Space to Change toilets click here.

For more information about Changing Place toilets click here.