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.

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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.

You surprise me

Autism. Routine. Structure. Predictability. Sameness. Uniformity. Repetition.

Surprise?? This word very rarely features in our day to day life. I know what Caleb will say as soon as he wakes up, I know what he will choose for breakfast, I know what movies he will pick to watch, I know what games he will play, I know how he will react to change and I know what situations will make him anxious. I like to think I have a fairly good grip on his reactions and I can usually predict what his next steps will be but just sometimes he will do something completely unexpected and he will catch me by surprise.

One of these surprises came last week. Caleb attended a school trip to a pantomime. His school had been lucky enough to be able to provide a whole school trip to the pantomime all free of charge. There was much excitement and a realisation that this was a great opportunity for the kids. The trip would involve a 60 minute bus journey, the show itself and the bus journey home again. An early lunch was scheduled and the pupils would all return to school at tea time. I signed the permission slip a few weeks before the event wondering if Caleb would actually go.

We started preparing for the trip a few days before; we spoke about what a pantomime is, what Caleb could expect to see, we watched clips of panto’s, we talked about the theatre, we explained it would be dark with bright lights on the stage. We went over the time schedule – how lunch would be early, tea would be late, how the bus journey might be longer than 60 minutes if there’s traffic.

He worried about it all – his tea being late would mean his bath would be late then his bedtime would be late. But his lunch was early and that would mean he would need the toilet earlier and would he be able to go to the toilets at the theatre. What if he didn’t like the noise – he didn’t think he could eat at the panto with all the people there. I reassured him over and over, told him he didn’t have to go. I wondered if I should make the choice for him; I didn’t think he could cope with this and I didn’t want it to traumatise him from future trips. I didn’t think he’d like the noise, the busyness, the different time schedule. I thought he’d be too uptight about all the arrangements to even enjoy the show. However, he was adamant that he wanted to go and with the support of the school I felt I had to give him the chance. I reluctantly dropped him in the playground to wait for the bus.

I thought about him all afternoon – was he coping?, had he eaten?, did he need the toilet?, was he enjoying the whole thing? Then messages on my phone alerting me the buses were stuck in traffic and they’d be late home. We’d prepared him for this but I figured the meltdown would be inevitable on his return. I got his room ready to have some cool down time when he got back – I was certain the whole experience would bring a meltdown when he got back to the safety of home.

Surprise: I collected my little boy from school at 6pm and instead of finding a boy ready for meltdown I found an excited boy ready to tell me about his trip! He was so excited that he was at school late, he laughed all the way home as he recited the jokes from the panto, he was animated and loud as he acted out the scenes he’d watched. He told me he loved it and that he’d had a great day! Later as he got into bed I realise we’d had no meltdown. It seems such a small thing but I felt such pride that he’d done it – he’d managed a school trip and managed it well.

I like to think I have a fairly good grip on his reactions and I can usually predict what his next steps will be but just sometimes he will do something completely unexpected and catch me by surprise.

2018 – miracles, milestones & meltdowns.

So 2018 is coming to an end and we’re about to be launched into 2019. 2018 – the year I started to blog and the year I started to share about our different kind of normal so here’s a look back at the year we’ve had and a look forward to what 2019 will bring.

We welcomed the arrival of 2018 from a hospital room – we started the year fighting a chest infection and as Zac battled through, the rest of us hoped for a miracle. We didn’t have time to celebrate the beginning of this new year, we were thrown right into survival mode and after a weeks stay in hospital we were home – our warrior had defeated another infection – our first miracle of 2018. The rest of 2018 saw Zac keep in the best health he’s ever had – we managed our longest ever spell out of the hospital ward (11 months) and we’ve celebrated him get stronger month by month. We’ve saw his scoliosis half as we braced his spine and he’s had various new splints to help protect his legs. This summer he perfected his driving skills and is now a master with his wizzybug, he gained some strength in his legs and he has been able to play with more function. He got some new wheels, a new fancy bed and has started to use technology to work his tv by himself!! As we go through the everyday he amazes us with his strength of character, his bravery and his wicked sense of humour!

2018 saw us go through various tests and assessments with Caleb and although we’ve always known he was different, this year the word autism was thrown into our world. We’ve researched, set up aids to help and learned techniques to help Caleb understand this world that doesn’t come naturally to him. It’s a relief that we are now close to official diagnosis; it’s been a long journey with various professionals, meetings, appointments and many meltdowns along the way. I would love in 2019 to raise more awareness of autism so that this world can see my son for the super human he is. We’ve celebrated him win awards at school this year, proudly listened to his excellent reports and been super proud of the belts he gained at tiger class. As we go through the everyday he amazes us with his genius mind, his insight into numbers and the incredible details he notices.

We became a stronger this year as we all accepted our different. There is a relief in letting go and accepting we’re not going to have that normal life and it brings a freedom to just be our different and enjoy it. We had an amazing family holiday this summer where we chilled and had fun, we celebrated birthdays, we got tattoos, we went road trips, we had family nights, we’ve eaten a lot of cake, we’ve laughed and we’ve made memories. Me & Craig celebrated 10 years of marriage and have even managed to get away for a few date nights. I had my biggest challenge ever as I learned to get to grips with our bus, I gave up my part time job to be home full time and we celebrated the big milestone of Zac starting nursery. We welcomed carers into our home this year for a few hours a week and although I was initially apprehensive about this, these lovely ladies have become like part of our family as they look after Zac for a few hours so we can have some time out. Yes there have been hard times too – our weeks are filled with appointments, treatments and daily to-do-lists, there have been tears at the frustration of it all, there have been fall outs, battles and meltdowns. There have been weeks filled with craziness, days where it’s been exhausting, days where we are on edge waiting for the next hospital admission and days where we’ve not wanted to be different. But we take each day at a time and get through these times as a team. A new day always comes.

So we’re about to say “hello” to 2019 – I plan to set up a Facebook page for our journey, I hope to raise awareness of different, I hope to continue to share our story. I hope to be stronger, braver, fearless. I will continue to take one day at a time and 2019 it will be well with my soul. I will live my different kind of normal to the best I can!

*thank you to everyone who has supported & followed our journey this year! Wishing you all happiness for 2019!!

Merry Christmas to my sma mummies!

I started out my journey of being an sma mama with just me – I didn’t know anyone else in this position or anyone else going through the same whirlwind I was in the middle off. Through the power of FaceBook that changed – another sma mama from Scotland saw one of my posts and messaged me saying she knew of another mum too so she set up a wee group and we became the 3 sma mums. We messaged lots for support on all things sma. Fast forward a few months and we were a group of 5. Our friendship and support continued to grow and these girls have become a life line in my daily life – phone a friend & ask the audience. A few weeks ago we added another mama to our group who is at the beginning of her whirlwind making us 6 Scottish sma mums. It’s nearly Christmas – a time to be thankful for what we have and a time to believe in miracles. So my Scottish sma mums this is my thank you to you:

Right now we are a group of 6 mamas; we all have different backgrounds, different beliefs, different ways of coping, different family set ups and different views but the one thing we all have in common is we all have an sma warrior. Our sma warriors teach us all daily what true strength is and they are proof that miracles happen. We have only met each other a handful of times and yet I feel I’ve known you all forever. When we got dealt this sma card we were all searching for someone else who totally got it, someone else who would understand & for me that group of girls is you.

Some of our days are hard, some of our days are exhausting, some of our days are filled with appointments. Some days our backs are breaking, some days we feel guilty, some days we fight with our partners, some days we are stressed, some days we don’t even get through half of our to-do-lists. Some days we want to run away and some days end in tears. On those days we pick each other up, we tell each other tomorrow is another day. On those days we rant to each other, we feel each other’s pain, we get the emotion out – our phones ping all night and usually the tears turn to laughter as we dig each other out. On those days there is no judgement – we’re all in it together, we totally get it.

Some days we see amazing miracles, some days we meet milestones never thought possible, some days we smash through our to-do-lists by lunch time, some days we fall in love with our partners again. Some days we have no hospital, some days we get a break and some days we feel on top of the world. Some days we love the life we have and some days end with a smile. On those days we celebrate together, we feel so proud of each other’s kids. We send messages of support, funny messages and we share the highs. We’re all in it together, we totally get it.

Our group has become more than sma – it’s a group of mamas who are incredibly strong, incredibly brave and we have each other’s backs no matter what the situation. We message each other to say goodnight, we check in if someone’s been a bit quiet for a while, sometimes we send a novel, sometimes we just send an emoji, we message at the “3am roll”, we message from the hospital, we message with advice, we message with support, we message with rants & we message with high fives.

So girls I want to thank you all for the laughs, the rants, the tears, the miracles and the milestones we’ve experienced as a group this year. I feel privileged to call you all friends and love doing this different kind of normal life with you. I wish I could’ve gotten us all a spa day or a This Morning makeover but all I have is a thank you and Merry Christmas to you all. I look forward to smashing sma life with you all in 2019.

Love me x