Sharing our story!

A few weeks ago we took part in some filming for the charity muscular dystrophy uk. The film was to be used to help their campaign in trying to get the treatment, spinraza, approved by nhs England. This is the treatment Zac has been receiving since June 2017. For us this treatment has been a miracle & for those who follow our journey you will know this medicine has enabled Zac to reach milestones we never thought possible; he can drive a power chair, he is attending nursery, he has kept well & he is gaining some muscle strength back!! Families in England are still being denied this treatment so we wanted to share our story to help the campaign. Our hope is that if even one person is helped by seeing our wee video then it’s worth sharing our story. For anyone out there who may be struggling with a diagnosis of any sort please know you are not alone. Sometimes life is unfair & difficult and throws curve balls but always hold on to hope – I hope our story shows that & I hope our story shows that miracles still happen. Below is the link to the little film we made.

https://m.youtube.com/watch?v=7WtNKOCFviM&feature=share

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Dear 16 year old me.

This year I will turn 32 years old; 16 years ago I was sitting exams and wondering what my future would look like. Life has changed so much since then and much of what I thought my life would look like has changed drastically. If I could go back and give the 16 year old me some advice to prepare for what my life is like now, here’s some of what I would say:

 

Dear 16 year old me,

I know right now you’re feeling the pressure of exams, you’re trying to choose what to study, you’re looking at university brochures thinking that this decision will determine your whole future. Well I want to tell you not to stress, your exam results won’t define you. You don’t have to worry about the future, you are going to find your purpose in life and you are going to learn more from everyday life than any university can teach you.

That boy you have a crush on right now is going to be the boy you marry. Love him with all your heart, be kind to him and learn to forgive quickly. That boy is going to become your best friend, he will be your rock and you will become a strong team. Together you are going to face many challenges, there will be hard times and you will need each other. Keep laughing together and don’t forget who the two of you are.

You think its important right now to “fit in”, you care a lot about what people think and you worry about people judging you. Please don’t waste time worrying about these things – learn that it’s okay to be different, your whole life is going to become different from the normal and you’ll need to learn to deal with stares, questions and judgements. Keep your head held high and smile through it all.

The words autism and spinal muscular atrophy are words that will sound scary when you first hear them but I want you to know it’s okay to be scared, it will push you out of your comfort zone and help you become the person you were designed to be. Listen when I say you are stronger than you think, you are braver than you know and you are going to be able to deal with everything life throws at you.

There will be times when you are pushed to your limits, times when you feel like running away but stay strong – you can do this. Keep your sense of humour, you’re going to need it, remember to laugh often. Hold onto that faith you have now – you are going to see miracles. On the difficult days remember bedtime will come and a new day will start, on the good days be thankful and content.

There’s one last thing – Be kind to yourself, take time out for you and don’t be too hard on yourself. Remember who you are and remember that girl is pretty awesome. Follow your heart always – you’ve got this!

Love the 32 year old you x

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The special needs mama.

Being a mum is the most challenging role I’ve ever had to play. Your beautiful babies get placed in your arms and all of a sudden you are totally responsible for these little lives. You dream of what it’s going to be like; feeding, nappies, sleepless nights then onto toddling, splashing in puddles, cuddles, bedtime stories and you dream of the people these little ones are going become. Then one day life throws a curve ball and you become a “special needs” mama.

The “special needs” mama may have to deal with nappies longer than the average mum, will probably be getting up during the night more than the average mum, will maybe be doing more physical care and will probably be dealing with hospitals, appointments, school meetings and professionals in order to fight for the best for their child. The “special needs” mama might not be able to dream of a time when their child grows up, they may not be able to think further than the next few days, they might have to adapt their plans for their own future. But the more I thought about it, the more I realised we’re all just the same. All our kids have different needs and all our kids have little quirks that only we know how to deal with. We’re all mums muddling thru the everyday doing the best we can.

As mums, special needs mums or not, we are all exhausted, we run after our children day & night, we all work as hard as we can to ensure our children have all they need, we all cry sometimes, we all need a break sometimes, we all make sacrifices for our babies, we all worry, we all feel insecure, we all feel judged at times, we all want our kids to “fit in” and we all face challenges.

Our babies make us proud, they make us feel love we never knew possible, they bring out this protective instinct we never knew we had, they make us brave, they teach us amazing things everyday, they show us what life is all about and we become better human beings because of them.

So this Mother’s Day we’re all “special”, we’re all doing our best and we’re all in it together. Happy Mother’s Day to you all and know that you are loved today. 💕

A valentines message for my husband.

I married my childhood sweetheart, my best friend. We used to dream of our future – what it would be like, what jobs we would have, where we would travel and what our babies would be like. Fast forward 13 years and we have 2 boys – one with sma and one about to receive an autism diagnosis. I stay at home and look after our boys while my husband works to pay our bills. It’s certainly not the life we had planned – we didn’t plan for lots of hospital, we didn’t plan wheelchairs, we didn’t plan meltdowns but what we did plan was to be a team – to love each other through the laughs and the cries, to work together through the challenges. Our boys have made us stronger and I love my husband for the daddy he’s become. So here’s my valentines message for my him:

I saw your face on diagnosis day, I saw your heart break and I saw your dreams crushed. I saw your pain at the situation that couldn’t be “fixed” and I saw your fear at the uncertainty of the future. But then I watched as you made different dreams, you adapted your plans and you changed your priorities. I saw you researching, I saw you figuring it out and I watched you become a totally awesome daddy.

I see you going to work every day and going through the daily grind, I see you coming home tired, I see you doing all you can to provide for us. I see you when you’d rather be chilling but instead you’re taking over the physio routine with our warrior, or you’re doing the meds so I can take a shower or you’re helping sort the dinner because an appointment has run late. I see you driving from hospital to hospital to be with us when our warrior has various treatments and tests. I see you run to the supermarket because I haven’t been able to get out that day. I see you diffuse melt downs, I see you typing up social stories, I see you make cool down areas and I see you finding solutions. I see you turn down nights out, I see you miss your team playing. I see you.

I see you laughing & having nonsense with our boys, I see your sense of pride when our boys reach a milestone, I see you celebrate when our boys achieve a miracle. I see you.

I am so grateful to you for all you do and please know I see you totally smashing this different kind of normal life. This Valentine’s Day I see you and I love you for all of it.

What you don’t see

My oldest son is about to be diagnosed with autism. I guess I’ve always known he was different, a bit quirky and he’s always done some odd things but these things are about to be given an official name and that name is autism. You might not always see it but it is there and so here’s a few things about my son that you don’t see:

You might see my son playing happily at the park but what you don’t see is that he’s going down the slide over and over again in a repetitive way, you don’t see the clock inside his head that he’s keeping his time with, you don’t see that he’s trying to beat his record every time, you don’t see that the other children have tried to get him to join their game but actually he’s happier playing his own game and you don’t see me warning him every few minutes that we will be leaving the park soon because the transition will be difficult for him to handle.

You might come into my home and see my son watching a cartoon on his tablet but what you don’t see is that for the past few weeks he’s watched every season and every episode of that particular cartoon, you don’t see him quoting chunks of language from one of the characters and you don’t see the big deal it is if I suggest we watch something else.

You might see my son playing with his trains like any other boy but what you don’t see is he has each of his trains placed strategically and if someone moves them it will cause chaos in his world. You might see him looking at his globe of the world but what you don’t see is that he knows the temperatures in a lot of the countries he’s looking at and he knows how many hours it will take to fly there.

You might look through my kitchen window and catch a glimpse of me and my son at the dinner table but what you don’t see is the battle I’ve had to even get him to sit down because he is not interested in eating, you don’t see that he’s asked me for fish fingers for the 100th night in a row and you don’t see the melt down that will occur if some of that spaghetti bolognaise spills onto his skin.

You might see my son sitting in the class, behaving well and carrying out his tasks but what you don’t see is the effort he’s putting in just to be able to get through the school day, you don’t see him struggle to understand all these different conversations going on around him and you don’t see him taking every lesson very literal.

You might see my son come racing out of school at 3pm and running straight to me but what you don’t see are the hours we’ve spent going over social stories and the preparation we’ve gone through to get him to do this. You don’t see the burst of emotion he’s having at the school day finally being over.

You might see my son in the supermarket, you might think he’s being rude or naughty, you might even comment on it but what you don’t see is him struggling to process the lights, the noise, the busyness, you don’t see all this information flooding his brain so that he cannot cope with it.

You might not always see it, but I do. The professionals have seen it and they’re about to tick boxes, add up score sheets and give my son an autism diagnosis. You might then just see autism but I see a boy whose mind works in an incredible way, a boy who notices things others don’t, a boy who amazes me every day and a boy who fills my world with awesomeness!!

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Please don’t break the rules.

For people with autism, rules are not meant to be broken! Rules bring structure and predictability. The world can be a confusing place for someone with autism; social situations are unpredictable, it can be tricky to workout what a person will do, what they will say and how they will feel. Rules eliminate some of the confusion – “I know how this person will act in this situation because they should be following the rules & if they’re following the rules I know how to respond appropriately, I know what to expect because I will also be following the rules”. Rules bring a feeling of safety, they bring order to the chaos but only if they are not broken!

For the last two days I have collected Caleb from school & he’s been upset – in his mind some rules have been broken. The first one – “mum something isn’t right, my teacher has broken the rules.” He starts acting really distressed – he’s quoting movie lines (something he does when he doesn’t know how to express his own feelings) and he’s telling me he’s trying to figure out how he can “fix” this problem. He finally tells me “my teacher went into the boys toilet & she’s a girl – she shouldn’t be in there it’s against the rules.” We have a discussion about why his teacher may have needed to break the rules and go into the boys toilet – maybe someone was ill, maybe someone was in trouble, maybe someone hadn’t come back to class, maybe someone was calling for help, maybe it was an emergency. I try to reason out all these situations with him and no matter what I say his response is “well she should’ve called a man teacher.” In his mind there is never a situation that is appropriate for this rule to be broken. We spoke about it all the way home and when we finally got in he asked me to leave him for a while because he just needed quiet time.

The second incident – someone got into trouble when it wasn’t their fault. It was one of his friends and someone told her to break a rule but then told the teacher and she got in trouble. He’s distraught. His friend shouldn’t have got a row, it was the other persons fault, they told her to break the rule. He cannot process this – it’s all to confusing – someone told you to do something then that same person has got you into trouble. When I collected him he told me his heart had been broken by seeing his friend get into trouble – he told me he had to find a solution to this and he had to make it better for his friend. Again when we got home he told me he needed quiet time. That was a few hours ago and he’s still saying he can’t stop thinking about how the rules were broken. We’ve spoken about it, we’ve looked at all the different perspectives of the other people that were involved, we’ve checked his friend is ok now but he’s still got a broken heart about it.

These are just two little examples of things that can happen in every day life and for most of us they don’t stress us out or cause us any pain – we usually get over it pretty quickly and move on. For some of us rules are made to be broken, but for my little guy I’m afraid they must be followed and followed to the letter!!

I need it to be bedtime!

It’s 7pm and both my boys are in bed because I need it to be bedtime. I know it’s pretty early and this is earlier than they would normally be in bed but for tonight I need it to be bedtime. One of my boys is watching tv in bed and the other is watching his tablet – I’m very aware I’m probably breaking every super nanny rule of a good bedtime routine but tonight I don’t care about any rules I just need them to be in bed!

I’ve heard “mum” being shouted, screamed, whispered about 1 million times today and the demands keep coming. The demands never really end; I’m up 3 or 4 times in the night to do position changes, 12am, 2am, 3.30am, 5am, 6am. Has my day started? Did the night before ever end? And so there’s only ever a few hours break until someone needs me again. “Mum I need a drink”, “mum I need the toilet”, “mum where’s my dot-to-dot book”, “mum can you help me”, “mum I’m not comfortable”, “mum write me sums”, “mum my legs need moved”, “mum where’s my car?”, “mum mum MUM!!!” They rely on me for so much – one needs physical help for mostly everything and the other demands so much mentally.

I’ve spent all day sorting food & feeds; one of my boys has a tummy button so is mainly tube fed and these feeds need connected on & off throughout the day & night to ensure he’s getting the correct amount of calories and nutrition, the other needs major encouragement and negotiation to sit down at the table and eat “yes I know that sauce is a deeper colour but it’s the same”, “the pasta isn’t bigger it’s just the same”, “let’s use the timer”, “a few more spoonfuls please”, “yes I know you wish it was just fish fingers”. I need to cook my own dinner but there’s a car race going on around my bunker; moving any of these cars or demanding that the race is finished will result in a meltdown – I do not have the energy to deal with a meltdown so I will work in between these strategically placed cars. The race gets louder and louder, the wheels running over the work top in a repetitive motion. I can no longer hear my music playing, I can’t hear anything.

Autism means facts have been thrown at me all day: “mum did you know it’s 37 degrees in Egypt right now”, “the time in Australia right now is…”, planet Jupiter is this big…”, “this movie is 102 minutes long”, “2 years ago today this happened”………..

Sma means I have a son who is a master at communicating – it’s the only way he can get what he needs or wants so his little voice chatters all day “mummy can I talk”, “mummy I’ve got something to say”, “mummy I need to tell you something”.

We went out for a bit today and going outside of the house is like a marathon operation. Just getting the boys ready and into the car is exhausting – lots of lifting then planning about where we’re going, what we’re going to do. Then there’s the bags of stuff we need and wheelchair to sort. It’s hard work physically pushing a wheelchair around and transferring to the car. We all need a rest by the time we get home.

I love my two boys, I love their differences, I love their quirks, I love being their mummy – I wouldn’t want anyone else running around after them – it’s my job and I love it!! But right now I’m tired and I need them to be in bed so I can breathe for a while, so I can hear myself think, so I can have a rest. If there’s any other parents in this position right now – I’m with you – here’s to a few hours of quiet before it all starts up again in our different kind of normal.