I am a carer!

It’s carers week this week and that title carer, well what does it actually mean?? I often struggle to answer when someone asks me the question of what my job is – if I say I’m a carer I get; what level of care are you at? Which sector of care are you in? Where about do you actually work? Who do you care for? Then somehow when I say I care for my 2 sons who have additional needs it never quite feels like I have a “proper” job, I always feel inadequate next to someone who actually goes out to work, I always feel I’m not contributing to society enough, after all doesn’t every parent care for their child? I never thought I would find myself in the position of being a carer, it’s not really what I had planned but life had other ideas and now I find myself in the role – I didn’t apply, I didn’t get interviewed, I acquired the job out of love for my two boys. So on carers week I thought I’d give a wee insight into some of the things I do as part of my carers job title.

I administer medications three times a day, sometimes more during periods where my son is unwell, I lift and reposition my son several times during the day and night, I make up feeds and administer them through a feeding tube, I do physio with my son daily, I do chest treatments with my son daily, I push a wheelchair, I attend many appointments at hospital, nursery, home with a number of health professionals, I order medicines, I make phone calls, I change and help with toiletting, I bath, I do hydro therapy, I dress & undress my son when he needs, I clean up sick, I take my son to the places he wants to go, I cut up food into tiny manageable pieces, I help lift a spoon, I get drinks, I get toys, I help him do art & craft, I follow his instructions. I make visual timetables, I help calm meltdowns, I attend meetings at school, I keep my son safe from danger, I write social stories, I help with sensory issues, I make our home a comfortable environment, I research. And there are millions of people out there who do the same as me daily, millions of other carers.

I’ve given up my own chance of career, my social life has changed, I rarely go out, I don’t get holidays from this job, I don’t have a list of people to call for a break, I don’t ever switch off, I worry, I cry, sometimes I’m lonely, sometimes I wish it was different. But I also laugh a lot, I get to celebrate amazing milestones & achievements with my boys. Being a carer is exhausting physically and mentally, it’s relentless, it’s selfless, it’s hard work but it’s also rewarding, it’s fulfilling, it fills my heart with happiness.

I’m one of the lucky ones too – I have an amazing husband who supports me & parents who also help daily, some carers do this on their own, some carers work another job on top of caring, some carers never get respite. Some times I hear “you’re so lucky to be at home all day” and yes I do feel very fortunate that I can be at home with my boys but on carers week please know that I’m also working hard and trying my best for my boys! Next time someone tells you they are a carer for a family member please don’t think less of them, they are doing a vital role, they are devoting themselves to making someone else’s life better, they are caring out of love and on carers week let’s recognise that!!

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It’s my spinraza-versary!!!!!

Today, 8th June 2019, marks 2 years since Zac started his miracle medicine, spinraza!! 2 years ago we watched our little warrior get wheeled into theatre to have his first intrathecal injection administered. 2 years ago we were terrified. 2 years ago there were tears. 2 years ago we were in the middle of a whirlwind. 2 years ago there was fear for the future, we didn’t even know if there was a future. But 2 years ago the doctors took a risk, they gave our boy a chance, they gave him a lifeline. And in amongst the turmoil of feelings in our hearts that day there was an overwhelming feeling of hope. We made it to treatment and that meant we had given Zac the best chance. Just 2 years ago – it seems to have gone by in a flash and yet it seems like we’ve been living this sma life forever.

The last year has been a merry-go-round of appointments, meetings, medicines, feeds, physio, nursery, phone calls, health professionals, laughs, tears, tantrums, worries, smiles – sometimes all of this in one day!! But it’s also been a year where we’ve grown stronger, braver, crazier and happier as we all adapt continuously to this different kind of normal life we have.

When Zac started treatment 2 years ago we were asked so many questions; how will this medicine work? What will it do for Zac? Will it cure him? Will you still have to lift him? Will he still be in hospital a lot? Will he still need his feeding tube? Will he still be in a wheelchair? Will he ever walk? The answer I always give is that we just don’t know what the future holds, no-one ever does, but what we do know is that we take each day at a time and our goal has always been to make life as happy as can be for our boys. We never had any expectations for treatment when Zac started, we just wanted him to have the chance at life. We just wanted him to achieve all he could achieve. We wanted him to be able to take part in family life and we wanted him to be happy and loved for the incredible boy he is. We think spinraza has done that and more for Zac!! Over this year we’ve watched him get stronger & stronger, we’ve cheered him on as he’s gained new skills, we’ve championed him as he’s met new milestones and our hearts have burst with pride every time he’s celebrated an achievement.

We made this little video (link below) to show how Zac’s second year on spinraza has been – we hope it shows hope; that no matter what situation you find yourself in life can be lived, maybe a little differently at times but it can be lived.

https://m.youtube.com/watch?v=XooKrEL3vFc

Thank you to everyone who continually supports us as we live our different kind of normal.

My buffers are boiling – autism & echolalia!

“Mummy my buffers are boiling today!!” What an odd expression for your child to say as they walk home from school – what on earth are they talking about? Buffers?? Boiling?? This is an example of echolalia and it is very common in autism.

Echolalia basically means repeating & echoing words and sounds – it’s how we all learn to talk as babies. We copy the words & sounds we hear and as we gain more & more understanding we are able to put together our own sentences and formulate our own phrases into meaningful language. We are able to communicate effectively. However, people on the autistic spectrum will usually say words and phrases in the exact way they learn them. They will use the same tone and sometimes even copy the accent of the person they’ve learned the phrase from. They will copy phrases from cartoons, movies, teachers, family and wherever else they may hear language from.

Echolalia can be used as a way to calm someone when they’re anxious – they will repeat a familiar phrase, it can be used to “self talk” through a difficult process or it can be used as a way to communicate when someone can’t actually form their own words or explain in their own way how they are feeling. People on the autistic spectrum can memorise huge chunks of language and quote it back word for word – sometimes it can be useful and other times not so much.

Repeating phrases from cartoons is something Caleb does often – obviously because I’m around him all the time and tuned into his ways I can tell what he’s quoting but when he meets someone new this can be very odd. Only last week a supermarket worker casually asked him what sweets he was buying, Caleb replied with “10 pies, a packet full of chips, 30 apple cores, a sponge pudding, 100 sausages and an orange.” Echolalia. He learned this phrase from a cartoon, knew it was a list of foods, knew the worker was looking for foods as an answer so replied with what he’d learned. He will often do this – if he is anxious, doesn’t quite know what someone is asking him, isn’t sure how to formulate his own answer then you are likely to get a chunk of learned language. He once told his teacher that he was “melting” and was saying it in a very funny accent – again he’d seen a cartoon character say this and was actually trying to get across that he wasn’t coping very well with the work he’d just been doing. Another example would be “my buffers are boiling” – this is straight from Thomas the tank cartoons. I knew it meant he’d had a hard day, he was exhausted, he’d had enough. He wasn’t able to get his own words so Thomas’s words would do the job in his mind.

So echolalia. If you hear my little guy talking in a funny accent, saying words or phrases that don’t quite match the situation he’s in, answering your question with a random, odd phrase that doesn’t make any sense it’s a sign that he’s not understanding what is being asked of him or he isn’t able to actually form his own words at that time so a crazy quote or phrase from the wise old elf or Thomas or fireman Sam is the perfect way to answer in his mind!!! Who doesn’t love a random cartoon quote to brighten up their day anyway??!!

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

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.