I found myself disparagingly wondering if this shows that there really IS a day for everything now. And then I thought about it a bit more.

Of all the challenges Sebastian faces at this stage of his duel diagnosis of Duchenne Muscular Dystrophy and Autism, the fact that he is not yet continent is one of the biggest in practical, day to day terms. And this is not because of his lack of toileting ability but the lack of awareness, support and facilities.

It is an area of disability that even within the SEN world isn’t really talked about.

Perhaps it is to protect our children’s dignity and I fiercely believe in that. Ironically though, the lack of awareness created by the fact that no one talks about it means that I am failing to do just that.

We all know that it’s important to talk to children about disability to create awareness and understanding that not everyone is the same.

So we need them to know that people might look different, move differently, think differently AND that they might go to the toilet differently.

Seeing an older child in nappies should not mean raised eyebrows and staring, it shouldn’t mean whispers.

It is only by talking about it, acknowledging it, that we change the assumption that everyone over the age of 3 is continent.

And it is only by changing that assumption that both understanding and facilities will catch up. There should be no more shame in not being continent than there should in not being able to walk.

A proper changing facility should be as much a part of making somewhere accessible as a wheelchair ramp.

But facilities to change anyone larger than an average 3 year old just don’t exist in enough places.

Where to change Sebastian is something I think about wherever we go. It adds an extra layer of anxiety to daily life.

I have changed him in the boot of the car, on tiny changing tables in the middle of busy public toilets, on toilet floors, in cramped disabled facilities that aren’t fit for purpose.

I have changed him standing up because there isn’t anywhere for him to lie down, meaning that he isn’t properly clean.

I know that as he gets older and bigger, this will only become more of an issue, impacting our lives more and more.

I didn’t even consider this need before we were faced with it.

I am sure many people don’t think about not having an appropriate place for their toileting needs to be met when they go out for the day. And yet it is an issue for far more people than we would like, people of all ages.

So if we are talking about protecting dignity, we actually need to talk about toileting more, not less.

We need it to be identified as the real issue it is.

Parenting a child with disabilities often feels lonely. As ridiculous as it may sound, having an older child who isn’t continent is very isolating .

When you have a baby, it’s totally ok to talk about nappies and wee and poo. As they get older, that changes. Life moves on.

Except that I am still doing it and sometimes it feels like I am the only one. I still carry a changing bag long after most of my friends have given theirs up.

It’s a very physical representation of all the ways that our life is on a different path to the one I expected. But I can rationalise the emotion.

The thing makes me feel as though I am alone is that this aspect of Sebastian’s disability is not acknowledged or catered for.

More importantly, I never want him to feel that he is an a world that doesn’t cater for him.

I don’t want society to disable him more than Duchenne and Autism already do. I never want him to feel shame around his toileting.

I want him to know that he deserves as much privacy and respect as everyone who can go to the toilet by themselves I want him to know that his needs are important and equal.

I want him to feel acknowledged and valued.

So it is not because I don’t care about his dignity that I want to raise this awareness for him. It is because I care so much.

So on World Toilet Day, here’s what I want to say. Toilets are a basic need. They shouldn’t be the privilege of the able bodied

I remember the start of school in September so well from being a child. That mixture of nerves and excitement, the new uniform and new pencil cases.

The feeling of being able to start again.

But I always found change unsettling and I still do. I am the worlds worst military wife because I hate moving around, I hate starting again.

I dread both the beginning and the end of things. The middle is the best bit.

I had no idea until I became a parent that sending your child to school for the first time means that those feelings you had from being a child come right back, but they’ve mutated and multiplied.

I would argue that they multiply again when your child has complex additional needs.

This time last year, the journey to get Sebastian’s place at school had felt long and emotionally exhausting.

The meeting with our village school, a main reason for our house purchase 5 years ago, had left me in tears as it was very clear that they were not interested in “accommodating his needs”.

And frankly, “accommodating” was never going to cut it anyway.

He deserves so much more than that.

Having dusted myself off and got over my wounded pride that they didn’t see how incredible my son was, I found that the school in the village 10 minutes away could not have been more different.

After the battle over the EHCP with the endless, draining need to fully itemise every aspect of your child’s needs, which leaves your determination to be positive in tatters, Sebastian started there in September 2018.

I was so anxious about so many things.

So many things that many parents don’t have to consider, as well as all the ones they do.

I had huge concerns about whether he would manage mainstream school, and that even if he did whether it was the right decision for him.

Whether we had made that decision for us rather than for him. My worries were not whether he would learn to read and write.

They weren’t about his academic progress at all. I had two which topped the list. Would he be happy? And would he be understood?

I don’t necessarily mean understood in the literal sense in terms of his speech or his specific needs, but more that the complex mix of Duchenne and Autism make him a complicated little person.

I wanted him to be “seen” through all of that. I wanted to be sure he would feel the safety that comes from being understood.

When I think about him going into year one this September, I feel incredibly lucky. Because he has done much more than “manage” and his needs have been much more than “accommodated”.

His mainstream school have practised inclusion at its very best, celebrating all that he is and providing for the ways in which he needs more help.

I really do know that we are the exception rather than the rule and I appreciate it every day.

Sebastian has smashed through every single expectation any of us had for him, mainly because he has been so well supported, felt so safe and secure.

He has taught me what progress really means and how hard won it can be. And how much more it matters when it is.

He has taught me never to underestimate him. His school have taught me how much difference finding the right place can make.

So yes, he is understood. And yes, he is happy. And yes, that really is all that matters.

6 weeks of summer holidays in front of me. 6 weeks with a 5 year old with Duchenne Muscular Dystrophy and Autism and his 2.5 year old whirlwind of a neuro-typical, very active little brother.

How do I feel about it? Overwhelmed. And then guilty. And the guilt comes in confusing, competing forms.

I feel guilty that I feel overwhelmed. I feel that I should be enjoying every second of the time I have with my boys

A feeling that is constantly compounded by the knowledge that my son has a progressive and life limiting disease.

I should cherish every second, every moment because I know that there will be a time that Sebastian won’t be here, and I’ll look back and wish I had been more patient, more present. Less irritated by snack demands and constant bickering.

The huge pressure of “making memories” that will get us through the tough times to come.

More than that, I feel an ever present anxiety that threatens to overtake me if I stand still for long enough. I feel an urgent need to make sure that we “do” things, that time isn’t wasted.

Not just because his time with us is limited but because also because his mobility is.

I find myself wondering what he will be able to do this time next year and knowing that there are things that will soon become impossible. It is in the back of my head all of the time.

And then I feel guilt for Toby, for his brother who runs through life at 100 miles an hour, builds himself balance bike courses in the garden, naturally gravitates towards other children, hero worships old boys and who would love an older brother who could do all of that with him.

Sebastian’s interaction with him is so much better than it was a year ago, and I have a huge amount of hope for their relationship.

I see the delicate strands of what will be a of brotherly love grow stronger every day.

But I also know that Toby wants to rugby tackle him to the floor, wants to do “ready steady go” races, wants an older brother to talk to him and involve him in his games and would follow around the house.

Our summer activities have to cater for Sebastian’s needs over Toby’s. There is no way of getting round that. And I feel guilt.

Here’s what I’m realising that the guilt boils down to. Acceptance. It all comes down to acceptance. I keep thinking that I’ve got that one down, but I’m learning that it’s a constantly changing journey.

This summer is different from the ones before it in that the gaps are widening.

My friends who have children of Sebastian’s age are on a different path.

That path was more parallel a year ago, the differences were easier to ignore. As our children grow, ours is veering in a different direction. And I’m really not saying that direction is worse.

But it is sometimes just acknowledging that is huge. Sebastian’s peers are reaching the stage where those tiny advances of independence add up to make a big difference.

In equal measure, there are extra things that I have to consider about every trip out, every activity.

Just little things, but the balancing act is precarious. The plates in the air threaten to fall.

I want to carry on doing the same things, keeping up with the same activities, giving Sebastian and Toby the same life I always would have done.

And then I am weighed down by a familiar sense of failure when I don’t quite manage to do it.When the competing mobility limitations, autistic needs and two year old tantrums mean that we all end up in a sweaty tearful mess.

Because here it is: my son is disabled. I can’t just carry on regardless, I can’t just pretend that we can do it all.

While I will always do my absolute best to ensure that he is fully included, that we fill his life with everything we can, it is also true that our lives are not the same as they would have been without Duchenne.

I battle with that every day, with knowing that I cannot change that.

And while that will never mean that our lives are full of sadness, it does mean admitting that some are things that are harder, that make the day more challenging and there are actually things that we just can’t do.

There are days when I feel like I can put my big girl pants on and give it all a good go. And then there are days when I have to accept my own limitations as well as those given to us by Duchenne.

So I’m working on knowing that I am doing the best I can on a journey I often feel ill-equipped for.

That the guilt I feel for the days that I know I didn’t make the most of him, that going to bed wondering if I gave him enough joy, enough love , enough life to make up for the fact that he won’t get long enough is an impossible standard to set myself.

I’m also learning that we find our moments of imperfect perfection through it all.

And that Sebastian’s smile when he splashes in the paddling pool will stay with me forever.

Before I start this, I want to make it clear that I am a firm believer that when it comes to feeding your child, fed is best.

However that works for you, there should never be any judgement, expectation or opinion from anyone else.

I know so many new mums who have felt huge pressure which does absolutely nothing to pave the way for successful breast feeding and in fact in many ways has the opposite.

All I know is what worked for me.

With Sebastian, my eldest son, breastfeeding did not come easily and continuing was mainly down to the fact that I felt much more strongly about needing to do it than I thought I would.

It  was, despite a rocky start, such an overwhelmingly special and magical thing that instead of any judgment either way, I just felt incredibly lucky to have been able to do it.

Once it was working, I felt that he and I were connected in a way that I had never felt with another person.

Breastfeeding was part of an intense love both for my firstborn child and for motherhood.

I was 36 weeks pregnant with my second child when Sebastian’s blood tests came back abnormal, when Duchenne was suggested as the most likely diagnosis.

Leading up to Toby’s birth, I was plunged into a kind of grief that is difficult to articulate.

I felt heavy with darkness that threatened to overwhelm me. Despite my very pregnant body, I was empty in every other way. Having loved feeling my baby move within me, I then felt nothing but a numb, cold fear.

And my biggest fear was not that he would also have Duchenne, but that either way I would not find a way through the darkness to love him. I didn’t feel capable of it.

And then he was here. And a light flickered back on.

He latched onto my breast within minutes.

He arrived knowing me, and I knew him.

In feeding him, I felt the jolt of a purely physical connection which brought me back, of my body which had so failed to keep Sebastian safe giving his brother life. I clung to it.

The darkness subsided because only he and I existed in the times I fed him.

I could close my eyes and drink him in, drink in the simplicity and purity he brought to the world which no longer made any sense to me.

Breastfeeding him connected me to the love I felt for him which could so easily have been buried beneath the fog and the grief.

It brought my focus back to him when so much attention was needed elsewhere. My mind slowed and let my body be at peace, transferring all the love I had into him along with my milk.

So I will never pretend that breastfeeding can work for everyone, that it’s even an option for some people, that it isn’t painful, exhausting and challenging in many ways.

I promise you will wake up covered in milk on multiple occasions and that you will feel you have showed your boobs to more unsuspecting people than you’d like.

But I am so incredibly lucky to have been able to successfully feed both of my boys.

Both journeys fulfilled me in ways I hadn’t predicted.

But breastfeeding Toby during what was the hardest year of my life healed a little part of my shattered heart and cemented it to his.

I honestly believe it saved me.