It’s 8am. We’re getting ready for school or we’re supposed to be anyway but there’s been a catastrophe.

I go up to my sons bedroom after hearing him call for help and I see him standing with a jigsaw in his hand.

It’s his favourite jigsaw – the countries of Europe with the capital cities under every piece. He does this puzzle several times a day, he loves to quiz us on the cities and he sings along facts that he’s learned about each country as he goes.

It’s became a huge part of his routine over the last few months. When I get to his room and see him with the jigsaw I can feel the stress levels rising – in my mind I’m thinking “please don’t tell me the temperatures of these countries again. We’re trying to get ready for school”.

But then I see his lip wobbling, his fists are clenched and he’s holding back the tears. Portugal is missing!!

I can feel the meltdown coming; I try to reason with him before the hurricane can take full force.

We try some techniques to bring calm, we talk about how the missing piece must be somewhere in his room.

I tell him we’ll conduct a search for Portugal. I ask him where he last saw the Portugal piece, “well in the puzzle obviously because how can I see it when it’s lost and if I knew where it was now it wouldn’t be lost”.

The torch comes out – it’s a full blown search party.

I could’ve continued getting ready for school, told him it was just a puzzle piece that we would find later but to him it wasn’t just a missing puzzle piece – it was a piece of his world that had went missing.

Without this piece in place his whole day would be wrong, he would worry about it all day and there would be chaos because all that mattered to him in that moment was that Portugal be returned to its correct place.

I pulled out drawers, I hunted through boxes and finally I found Portugal had fallen down the back of another game.

There was no elaborate celebration, no big hug, and no expression of thanks.

He simply put Portugal back on the puzzle board and continued with the school routine. It got me thinking though, so often we make light of others puzzle pieces, we see them as unimportant, irrational and we see them as petty.

But if someone needs all their puzzle pieces in order before they can get on with a successful day wouldn’t it be nice if we were more understanding and took a few minutes to help them find them all?

I would’ve searched all day for my sons missing puzzle piece, not just to stop a meltdown but so that my son could see that I understood the importance of Portugal.

It wasn’t just a missing puzzle piece; it was a piece of his world.

Dear Teacher,

It’s the start of a new school year for my son, year 3 of primary school.

The uniforms are spotless, the shoes are polished, the pencils all sharpened and the bags packed.

Everything is new, everything is shiny, there’s excitement in the air, expectations of what this new school year will bring.

The parents are all smiling at the school gates; we’ve all survived the summer. We’re all looking forward to the few hours of quiet where we won’t hear “Mum, Mum, MUM!!” We’re all so proud of our little people.

But as I watch my little guy wander through the jungle of the playground my heart is in turmoil.

You see, he’s spent all summer safe and sheltered from this world he finds hard to fit into.

At first he struggled to adapt to the holidays – he spent the first few weeks trying to emulate the school routine.

We watched number jacks on repeat, he solved pages of maths problems, and he gave himself break time.

While everyone else was sleeping in and enjoying lazy mornings my son was up at the “normal” school time and so we had hours and hours to try and fill with activities.

The change in routine caused mayhem in his world.

Finally, he accepted the holidays and spent the next few weeks lining up cars, learning the capital cities of the world and reciting facts he’d memorised about space.

We went lots of walks and bike rides where we counted our steps and tried to beat our records. We didn’t have any play dates – he preferred his own company and why would he see school friends when it wasn’t school time??

The summer days were tough for us both; we were both exhausted mentally and physically, there were meltdowns, there were tears from us both, there was screaming, there were more meltdowns and then more tears from us both. But there were also laughs and fun and happiness that we were at home together.

Then we had to prepare to come back to school.

We went over every detail, we done social stories; we spoke about the new class and the new things he might learn.

He was up during the night worrying and again mayhem was in his world.

There were some days, actually a lot of days where I couldn’t wait for the return to school but today my heart hurt when I had to say goodbye.

He’ll be with you, teacher, for 6 hours a day – will he be safe in the class? Will you know that he needs help with his jacket? Will you help him change at gym time? Will you help him eat in the busy dinner hall? Will you translate all the unseen bits of information that he will miss every day? I worry that his quirks won’t be accepted; I worry that others will find him weird. I worry that he won’t eat enough because he’s so anxious.

I worry that he won’t be able to communicate when he needs help. I worry that he will get lost in the classroom.

As difficult as the holidays were for us it still breaks me to leave my son at school.

So dear teacher, I hope you understand when I message you more than most or when I ask for a quick chat all I want for my son this year is for him to be happy, accepted and free to be the brilliant boy he is.

A few weekends ago my husband and I celebrated our anniversary with a night away in a lovely hotel.

We very rarely get to go out together as having two boys with additional needs means it is difficult to get childcare. While we were away it felt like a little escape and I started to think about what our lives would be like if we hadn’t entered the world of being special needs parents.

I felt a bit guilty about this but I was thinking I’d have a wardrobe full of trendy clothes, I’d be able to take long bubble baths, I’d visit lovely restaurants with friends, I’d travel the world and see new places, I’d have a career, I’d get a full night’s sleep every night, my back wouldn’t be breaking every day due to all the lifting I do.

As I was thinking about this different life and feeling guilty I also asked myself the question of would my life be fulfilled if it was different?

Would I be the person I am today? You see my boys have taught me more about life than anyone else – here’s just a few little lessons they’ve taught me.

Take one day at a time – I think this is the most valuable lesson my boys have taught me.

Before my boys came along, I was a really stressed person. I would worry about the small stuff and I liked to plan ahead. I liked to be in control but my boys have shown me that life doesn’t always follow a neat, straight path and that’s okay.

They’ve shown me that it’s okay to be scared of the future, it’s okay for things to change, it’s okay to have no clue about how you’re going to get through the next week and it’s absolutely okay to just get through one day at a time.

There’s something quite freeing about just taking each day as it comes, something freeing about removing the pressure of having everything perfect all the time and I wouldn’t have learned this lesson if it wasn’t for my boys.

I’m stronger than I think – my boys have taught me what real strength is.

They’ve shown me that even on the hardest, darkest days we still make it to bedtime and we still get up and do it all again the next day.

They have taught me that I can hear the worst news from a medical team and I can still keep it together and get the jobs done that need done. They’ve shown me that real strength is nothing to do with someone’s physical condition but is more about having the courage to face the everyday challenges with a smile.

They’ve shown me that I can face anything because they need me to, I can carry the universe on my shoulders and walk with a smile. They are the reason and without them I would not have the strength I have today.

I’m happier – my boys have definitely made me a happier person.

I laugh every day because it’s the only way to do this life. They make me laugh daily and even on the toughest days I can find one thing to laugh about.

They’ve taught me to see humour in the small everyday things and that is the best way to go through life – laughing until your sides hurt!!

So maybe in a different life I’d have it easier but I don’t think id be fulfilled and I certainly wouldn’t be the person I am today.

Kids – they ask questions all day long: Mummy what’s for snack? Mummy what does space look like? Mummy what noise does a parrot make? Mummy how many people are in the world?

Their little minds are full of questions; they soak up information then spit out more questions.

Some of their questions are funny, some serious, some you can’t answer, some you don’t want to answer and then there are questions you wish they didn’t even have to ask.

It was a Saturday morning when the question came. We were watching cartoons just chilling out. These questions always seem to catch you off guard, you’re never ready with an answer that will fix it all, you don’t get a manual at diagnosis day on how to answer these questions but still these questions will be asked.

The question comes like a like a bullet:

“Mummy can you take me to walking lessons”?

The lump is in your throat instantly, tears have rushed up to your eyes with the impact of this question being asked, you’re trying to stop the tears spilling out and when you don’t answer immediately he adds “It’s just that I can’t walk like everyone else so maybe if I got walking lessons I would learn to do it”.

You look at your little three year old sitting in his chair escaping his normal by watching cartoons and you feel so much heartbreak and guilt.

You passed a faulty gene to him and he has spinal muscular atrophy. It’s your fault he has to ask this question in the first place and now you have no idea how to answer.

You know it is very unlikely that you will ever see him take first steps but there is a part of your heart that will never give up on the impossible.

It’s something that is always pushed to the back of your mind – you see others his age splashing in puddles, chasing each other, running in the park and you feel a tinge of pain and sadness that your child isn’t truly the same.

You answer as best you can – you tell him that he has a cool power chair that can take him where he wants to go, you tell him that walking legs aren’t the most important thing about a person, you tell him that he can still do everything his friends do just in a different way.

You try to reassure him. You try every day to give him the confidence to believe in himself for who he is and you try to make him feel secure in who he is.

You don’t know if that’s what he wanted to hear, you don’t know if you’ve made him feel better, you don’t know if he’s understood yet that he’s different.

You go back to watching cartoons with another little piece of your heart in pieces and you think to yourself if only it was as simple as taking walking lessons.

Dear C,

A few weeks ago you asked me a question: “Mummy, am I bonkers?” I knew you had heard the phrase from a cartoon but it got me thinking there may be times when you hear someone call you bonkers. When you asked me this question, I answered with a quote from Alice in Wonderland;

“Yes, you are entirely bonkers but I’ll tell you a secret all the best people are.” You smiled when I told you that, you were proud to be bonkers.

I want to tell you that you are brilliantly bonkers and I never want you to lose this quality.

Being bonkers means you are a bit quirky, crazy, unique, different – all of these great qualities in my eyes.

As someone on the autistic spectrum you have this ability to see tiny details that most people miss; you notice immediately when someone has new glasses, you taste when a new ingredient has been added to your favourite pasta sauce, you hear tiny sounds that are miles away, you notice a flower has bloomed slightly more today than the day before – some would say “that’s bonkers” but I say your mind is incredible.

You have your own sense of style; you don’t like wearing jeans, you can’t wear the colour brown, you wear clothes that are mismatched often, you love the smell of new shoes, you can’t wear pyjamas under your duvet – some would say “that’s bonkers” but I say you are unique and don’t follow the crowd.

You always speak your mind; you have zero filter, you tell someone if they are late, you tell people when you’ve had enough of their company, you call someone out about making you angry – some would say “that’s bonkers” but I say you are straight down the line, there’s no second guessing with you and people know where they stand with you.

You have a genius number ability; you see the world in numbers, you can do fascinating maths, you remember dates, times, temperatures and you can do puzzles at super speed – some would say “that’s bonkers” but I say you are a genius and numbers are your specialist skill.

You find it difficult in social situations; you don’t like to be in big groups, you like your own company or maybe just being with one friend – some would say “that’s bonkers” but I say you are happy and you don’t need the approval of others.

So if anyone ever tells you that you’re bonkers please remember that yes you are entirely bonkers but all the best people are.