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!!