To our chas volunteer!!

The world is filled with lovely people, some of us are lucky enough to see this loveliness in action. Quite a few months ago we were offered the chance to be part of a new program that chas were running – a home support volunteer program. This service matches volunteers to families who are chas service users and helps where people feel they could do with an extra pair of hands; they might come in & help with some house work, maybe they will help catch up with some errands or they can offer support to a sibling. We asked if we could have some sibling support for Caleb; someone who could do some activities with him & keep him busy after school one day a week. Caleb was matched to a volunteer & this lovely person gave up her own Thursday nights to support him over the last few months. Sadly for us, our volunteer was offered a new opportunity which included a move down south so our Thursdays nights won’t be the same. We said goodbye a few weeks ago and this is a thanks to you – our lovely chas volunteer:

Thank you for coming into our home and totally getting us – for accepting the craziness & for just joining in with it!! Thank you for listening to Caleb talk about space, planets, numbers, countries & all the little obsessions he goes through. You didn’t just listen and nod along like so many people often do, you actually joined in with him; you gave him new facts, you fed his imagination, you expanded his knowledge! Thank you for running around the park to play football, for letting him win, for counting steps & for helping him achieve that biggest steps record ever!! For the hours you had to bounce on a trampoline and for the times he shouted because you were late!! Thank you for turning up at our house with craft supplies ready to keep Caleb entertained, for looking up experiments & projects you thought would interest him and for sitting watching repeats of Shaun the sheep whilst eating ice poles. Thank you for giving up your own time, for driving a distance to get to us & for being Caleb’s “grown up” that was just for him!! Lastly thank you for the postcard you sent Caleb – knowing how much he loves routine you said he’s to read it on Thursdays & knowing how difficult it is for him to understand the unseen you asked him to find your location on his globe so that he could see where you are!! It was such a special thing for him & just so you know he says a 7 hour drive is not too far for you to still visit on a Thursday!!

So lovely volunteer, we’re so glad you were a part of our family and wish you lots of happiness in your new adventures!!

If you are someone who has experienced the amazing work a volunteer does then you are like us & very lucky to see that there are lovely people in this world. If you’ve never experienced the work of a volunteer & you have spare time & a big heart then maybe you could be one and be the reason someone believes in the goodness of people!!

7 weeks of summer!

It’s been 7 weeks of summer holidays at a different kind of normal; 7 weeks of different routine, 7 weeks of relaxed structure, 7 weeks of meltdowns, 7 weeks of physical hard work, 7 weeks of mental toughness, 7 weeks of craziness, 7 weeks of “mum, mum, MUM”, 7 weeks of number jacks on repeat, 7 weeks of snacks every 5 minutes, 7 weeks of “he’s annoying me AGAIN”, 7 weeks of demands, 7 weeks of pure madness!!! 7 weeks of summer – some days it’s been a breeze, other days it’s been a full blown hurricane and the only reason we’ve all survived is because it’s been a team effort!!

Two boys, two different sets of needs (sma & autism) and one mama – there’s just no way you can physically do it all, so all summer we’ve operated as a team to make sure there’s been laughs, happiness and to make sure we’ve all made it to bed time alive! We might not have had as many days out as everyone else, we might not have had as many play dates as everyone else, we might not have stayed up as late as everyone else and we probably haven’t cherished every moment like everyone else but as I look back over the summer we’ve done it our way. We’ve went on holiday where we ate ice creams, played at the park, visited new places, went bike rides. We’ve had movie nights, went for long walks, played at the beach, more bike rides, saw a few friends, chilled at home and of course we’ve had some hospital appointments to fit in for both boys.

This has only been possible though because we’ve worked together. I am incredibly grateful for my parents who have been here every day over the holidays; for the ironing that’s been done, the 15 mins of google earth on the I-pad that’s gave us all a chance to breathe, the “I’ll come down so you can go to Tesco”, the trips with me to the park or walks so that I have someone to help with all the lifting, the extra pair of hands & eyes that’s needed when the boys are both in the same room together, the “I’ll get that” or the “I’ve changed my diary to do this”. My lovely husband who goes out to work early every morning just so that he’s back early enough to help get the bath & bedtime routine done, who works really hard so that I can stay home with the boys, who changes work schedules to be at appointments, who misses social events so that he’s home with us, who takes over so I can get a chance to shower or sort washing. For the friends who message to ask how we are – I know I don’t always get round to replying but I am very appreciative of you all thinking of us & know that in my head I am replying to you even if it doesn’t quite make it to the actual message!!

So 7 weeks are nearly up – my lovely boys will be back at school & nursery on Wednesday. The summer holidays have been very challenging and yes, some days, actually a lot of days have ended in tears. But that doesn’t mean I haven’t loved having them at home where I know they are safe, loved, sheltered, free to be their quirky, different selves. I am looking forward to the structure school brings & the 2 hours I have each day boy free but part of me will miss this survival mode of the summer holidays, part of me will look back and will forget about the meltdowns, the tears, the tantrums, the arguments and I’ll remember the moments of calm, the capital cities Caleb has memorised all summer, the excitement when he discovered the tooth fairy had been, the joy of Zac playing football in his power chair, the two of them laughing together and I’ll be so very grateful that my team got us all through to the finish line of the 7 week marathon that was the summer holidays!!

Dear Nursery – part 2

Dear Nursery,

 

We just wanted to write a part two to the letter we wrote at the beginning of our nursery journey – our first letter was all about how worried we were about this new milestone Zac was going to achieve, we were terrified at the prospect of leaving him, we were scared of the unknown but at the same time we were so very proud that Zac was going to celebrate a milestone we never thought possible. We’ve made it to the summer holidays, Zac has completed his first year of nursery and our hearts are filled with happiness and pride at all he’s achieved in this first year, so dear nursery there’s a few things we’d like to thank you for:

  1. Thank you for being Zac’s arms when he can’t reach his paint brush, thank you for holding his glue stick, thank you for helping him draw, thank you for showing him how to make models, thank you for adapting crafts so he can take part, thank you for letting him explore his creative side. This year he’s loved arts and crafts and he’s become a little artist. We didn’t know if we’d ever see first paintings and now our fridge is full of his masterpieces – we couldn’t love them more.
  2. Thank you for adapting nursery so that Zac can join in with everything – this year Zac has taken part in obstacle courses, sports day, gym, fairy tale day and this just makes us so happy. I know it is hard work for you all, I know you have to do all the running around, I know you have to do extra preparations, I know sometimes you’d rather have an easy day but seeing my boy with his sports day medal and hearing him tell the rest of the family that he was “racing” with everyone else means the world to us!
  3. Thank you for reassuring me – thanks for all the wee updates, the posts in his learning journal, the wee chats at the end of the session just so I know he’s been okay! Thanks for all the research you have done so that you understand his condition, thanks for supporting all we do to raise awareness of SMA and thanks for being an advocate to make sure he has all he needs.
  4. Thank you for accepting Zac for who he is, thank you for helping him make wee friends, thank you for including him in all the group times, thank you for showing the other kids that Zac likes to have fun like everyone else. Thank you for letting him talk and make up his wee stories, thank you for seeing him as the fun, cheeky, nonsense loving boy that he is.

So nursery, what a first year Zac has had – we made it through with no major hospital stays, we made it through with minimal drama, we made it through this new journey as a team. You have been a fab team to work with; you have all taken care of our boy and made his first year at nursery the most fun it can be. You have accepted him, included him, looked after him and loved him and for that we can’t thank you enough! Here’s to a lovely summer break for all of you – lots of relaxing and spending time with your own families. We look forward to year 2 of nursery and the new milestones Zac will achieve!!

Love Zac’s very grateful mummy x

zac nursery

Can you take me to walking lessons?

Kids – they ask questions all day long: Mummy what’s for snack? Mummy what does space look like? Mummy what noise does a parrot make? Mummy how many people are in the world? Their little minds are full of questions; they soak up information then spit out more questions. Some of their questions are funny, some serious, some you can’t answer, some you don’t want to answer and then there are questions you wish they didn’t even have to ask.

It was a Saturday morning when the question came. We were watching cartoons just chilling out. These questions always seem to catch you off guard, you’re never ready with an answer that will fix it all, you don’t get a manual at diagnosis day on how to answer these questions but still these questions will be asked. The question comes like a like a bullet:

“Mummy can you take me to walking lessons”?

The lump is in your throat instantly, tears have rushed up to your eyes with the impact of this question being asked, you’re trying to stop the tears spilling out and when you don’t answer immediately he adds “It’s just that I can’t walk like everyone else so maybe if I got walking lessons I would learn to do it”.

You look at your little three year old sitting in his chair escaping his normal by watching cartoons and you feel so much heartbreak and guilt. You passed a faulty gene to him and he has spinal muscular atrophy. It’s your fault he has to ask this question in the first place and now you have no idea how to answer. You know it is very unlikely that you will ever see him take first steps but there is a part of your heart that will never give up on the impossible. It’s something that is always pushed to the back of your mind – you see others his age splashing in puddles, chasing each other, running in the park and you feel a tinge of pain and sadness that your child isn’t truly the same.

You answer as best you can – you tell him that he has a cool power chair that can take him where he wants to go, you tell him that walking legs aren’t the most important thing about a person, you tell him that he can still do everything his friends do just in a different way. You try to reassure him. You try every day to give him the confidence to believe in himself for who he is and you try to make him feel secure in who he is.

You don’t know if that’s what he wanted to hear, you don’t know if you’ve made him feel better, you don’t know if he’s understood yet that he’s different. You go back to watching cartoons with another little piece of your heart in pieces and you think to yourself if only it was as simple as taking walking lessons.

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Mummy am I bonkers?

Dear C,

A few weeks ago you asked me a question: “Mummy am I bonkers?” I knew you had heard the phrase from a cartoon but it got me thinking there may be times when you hear someone call you bonkers. When you asked me this question, I answered with a quote from Alice in Wonderland;

“Yes you are entirely bonkers but I’ll tell you a secret all the best people are” You smiled when I told you that, you were proud to be bonkers. I want to tell you that you are brilliantly bonkers and I never want you to lose this quality. Being bonkers means you are a bit quirky, crazy, unique, different – all of these great qualities in my eyes.

As someone on the autistic spectrum you have this ability to see tiny details that most people miss; you notice immediately when someone has new glasses, you taste when a new ingredient has been added to your favourite pasta sauce, you hear tiny sounds that are miles away, you notice a flower has bloomed slightly more today than the day before – some would say “that’s bonkers” but I say your mind is incredible.

You have your own sense of style; you don’t like wearing jeans, you can’t wear the colour brown, you wear clothes that are mismatched often, you love the smell of new shoes, you can’t wear pyjamas under your duvet – some would say “that’s bonkers” but I say you are unique and don’t follow the crowd.

You always speak your mind; you have zero filter, you tell someone if they are late, you tell people when you’ve had enough of their company, you call someone out about making you angry – some would say “that’s bonkers” but I say you are straight down the line, there’s no second guessing with you and people know where they stand with you.

You have a genius number ability; you see the world in numbers, you can do fascinating maths, you remember dates, times, temperatures and you can do puzzles at super speed – some would say “that’s bonkers” but I say you are a genius and numbers are your specialist skill.

You find it difficult in social situations; you don’t like to be in big groups, you like your own company or maybe just being with one friend – some would say “that’s bonkers” but I say you are happy and you don’t need the approval of others.

So if anyone ever tells you that you’re bonkers please remember that yes you are entirely bonkers but all the best people are.

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And now you are 4!!!

Wednesday, 19th June 2019 – Zac turns four!!!!! I can’t quite believe my baby is 4 today, we were never quite sure what our future looked like, never sure which birthdays we’d get to celebrate, never sure how many candles we’d get to blow out and well today is another miracle milestone because Zaccy you are four!!!!

The house is decorated with banners, balloons, parcels & cake. There’s much excitement from Caleb who in his own way is so happy that you are four – he picked out a special present for you & took pride in writing your card. We’re ready to celebrate – this day is all about you Zaccy!!

I remember the day you came into our lives – we had so much hopes & dreams for the little boy you would become. Those hopes & dreams may have changed into different ones over the last few years but you are showing us that you can achieve more that anyone thought possible. You are showing us that you don’t follow anyone’s rule book, you don’t follow the medical journals, you don’t fit into the “normal” mould – you are making your own history, you are writing your own story, you are creating your own dreams and we are so proud of the little four year old you are!!

You fill our days with endless chatter, your cheeky humour makes us laugh, you face challenges with bravery, you love nonsense and all things mischievous. You are fun, you are smart, you are brave, you are our miracle & today you are four!!!!

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!!

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