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.

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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

Just keep swimming.

It’s been a crazy, busy few weeks for the Cams and life has been very stressful. We’ve had appointments nearly every day for the boys or myself, Craig has had a full on work schedule and it’s December which means there’s lots of extra things going on and lots to prepare for Christmas. Then there’s the everyday things to keep on top of like washing, cooking, housework and school schedules all in between the craziness! When we go through crazy, busy times like this people will often say to me “I don’t know how you can do this”. I’ll tell you my secret: I just keep swimming. There have been many moments where I’ve felt like I’m in the middle of the ocean drowning in the sea of appointments, to-do-lists and demands but I can’t let them pull me under – I just have to keep swimming. The more you keep swimming, the more the shore comes into sight. These crazy, busy times always pass, we always keep our heads above water and we always make it to the shore eventually – I have to remind myself of this when I’m in the middle of the ocean, then, I keep swimming. So there’s a few things I’ve learned while swimming through the crazy, busy times and these things make it easier to keep going:

1) Focus on one thing at a time: when I’m swimming through the ocean of craziness I can only see the day ahead – try to think about how crazy the next few days are and it’s too overwhelming and starts to pull you under. I make a list for the one crazy day I’m in and tick it off as I swim through the various tasks to be done. I may appear disorganised when you ask me how my Christmas shopping is going, I might come across as chaotic when I haven’t thought about the dinners or the school calendar or the weekend or the invite that’s 3 months away but trust me I do have it all under control – it’s just under control one day at a time because that’s the only way I can keep swimming.

  • 2) Talk it out: During these crazy, busy times I’ve found it’s best to keep talking things over. It’s easy to shut down when things get busy but that will only make it harder to swim through the craziness so keep talking, keep checking each other is okay. When we’re in the crazy ocean we usually go over the next days plans every night – where everyone will be and at what times. We don’t really need to have big, elaborate conversations during crazy times – that wastes vital energy that we actually need to keep swimming but we always check everyone’s okay. We go into survival mode and talk in bullet points; have you done this?, I’ve checked that, what do we need for this?, I’ve organised that. This is fine for crazy times because when we reach the shore and stop swimming we can be us again. As long as we keep swimming together it’s always okay.
  • 3) Take the pressure off: when we are in keep swimming mode we take all the extra pressure off. We don’t make any extra plans, we probably won’t see much friends and we only prioritise the essentials like hospital, school and work. If I send you a really short message or just an emoji it will probably be because I’m currently swimming through my crazy day – please don’t think I’m being rude – when I catch my breath, I will message again. When crazy, busy times hit us my freezer is stocked with easy dinners and some nights we even order a take away because I don’t have the energy or time to be cooking masterchef meals – take the pressure off – it’s not going to harm anyone for a few weeks to eat a few freezer meals! The world isn’t going to end if my living room hasn’t been hoovered or my washing is piled up or I’ve missed a phone call – I just need to take the pressure off in order to keep swimming.
  • So, I’ve made it to the end of a crazy, busy time, I’ve reached the shore. I’m tired, I’m drained but I kept swimming. I have my p.j’s on and glass of wine in hand and I’m catching my breath again. I will chill but only for a little while because I know for sure I will be swimming again – it’s the only way to stay afloat in this different kind of normal – just keep swimming.
  • Fish Finger Friday.

    It’s Friday – this means at around 4pm I’ll be switching my oven on and firing in fish fingers. I’ll then add toast and peas – this is Caleb’s Friday tea! This tea has become a signal of the weekend in our house, it’s a sign that we’ve made it through another week and we’re all doing ok. I breathe a sigh of relief as I dish up these golden rectangles and buttered toast – my back up will be walking through the front door very soon and for the whole weekend we’ll be a two man team. I am aware that this is not the most nutritious meal or the most culinary challenging but it’s become Caleb’s Friday thing and I’m not prepared to battle over food on a Friday so it’s far easier to keep the peace and accept this meal is fine for Friday nights.

    Being on the autistic spectrum can bring many different issues surrounding food for Caleb; sometimes it’s the colours, sometimes it’s the textures, sometimes it’s the temperature or sometimes he just simply isn’t feeling in the mood for that particular thing so completely refuses to eat it. Tomato soup is too orange, as are carrots and diluting orange juice, beans have a “bumpy” texture, spaghetti is too slimy, ice cream can sometimes be too freezing but other times it’s okay. The rice cakes have to be the purple ones and crisps are way too crunchy and loud in your mouth so they are a no go. Dinner times can be very challenging in our house as I try to make sure he eats nutritious, healthy meals. We use a variety of techniques including lots of encouragement, physical help and sometimes a timer to make it through a meal!!

    Then there are issues surrounding where to eat; it can be difficult to eat in public places because there’s lots of noise and distractions, eating in a big group can also be very challenging for Caleb. So if you see us at a cafe or a birthday party or even the school dining hall you will notice Caleb probably not eating very much – we try very hard to work on this but I’ve learned you have to pick your battles and sometimes being out in a public place is not the best place to have the battle. Sometimes it’s easier if we don’t make a fuss or draw attention and he can eat happily at home where he is in his safe place.

    So for some reason fish finger Friday became a thing and every Friday when I pick Caleb up from school he’ll say “I can’t wait for my Friday tea”. It seems to be a comfort to him, a familiar routine to start the weekend, it’s a tea he eats with no fuss or battles and it makes him happy. While we battle through every other meal time I’m happy to let Friday go, Friday is a chance to chill, we both surrender in the food war for a night and fish finger Friday is just another part of our different kind of normal!

    An open letter to my wonderful parents.

    Life with my two boys is very full on; one of my boys has SMA and the other is on the autistic spectrum. My days require planning, organisation, a sense of humour and an extra pair of hands! Most days this extra pair of hands is the hands of my wonderful parents so here’s my open letter of thanks for all they do to get us through the everyday:

    To Mum and Dad,

    Thank you for being there for me and my boys day and night, for the making mad dashes to our house in the middle of the night so we can rush off to hospital in emergencies and for helping out in the mornings with the school run. For the afternoons where you keep me company so I’ve not had to spend the day in the house by myself and for the evenings you spend with the boys so me and Craig can actually go out and remember who we are. Thank you for answering the phone any time with “We’ll be there in two minutes” and for cancelling your own plans to help us when our schedule has been thrown into turmoil.

    Thank you for the dinners that are cooked when our hospital appointments run late, the basket of ironing that has been done while I’m busy doing physio routines, the floors that are mopped when I’m answering the dozens of phone calls and the washing that is sorted when we have a sickie day.

    Thank you for learning how to do tube feeding so that I can have a break sometimes, for helping with physio, for researching and giving me ideas on how to deal with autism and for adapting everything so that the boys still do all the normal things that boys do with their grandparents; the trips to the café, playing at the park, swimming, board games, reading stories and camping out.

    Dad, Thanks for taking the time to help me with my biggest challenge yet – learning to drive a wheelchair adapted vehicle. Thanks for fixing everything in my house – walls chipped by wheelchair wheels, shelving in the cupboards, breaks that have occurred from melt downs, adapting equipment, putting mirrors and televisions on the wall – I don’t think there’s anything you can’t fix! Mum, thanks for being my sidekick at hospital appointments, for being the extra pair of hands and eyes I need when the two boys are together. You are the person who listens to everything and gives the best advice. Thank you for being the person who brings sunshine to our days.

    I don’t think I could ever thank you enough for all you do – we are so very blessed to have you as vital members of our team. Thank you for always supporting us, always believing in us and thank you for showing us it’s absolutely okay to be living our different kind of normal.

    From me x

     

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