But we only buy fish on Fridays

Routine and structure. Two important words if you are parenting a child on the spectrum. Children with autism will often have quite rigid thinking patterns and it can be difficult for them to generate new ideas. They are constantly trying to make sense of a chaotic world; everyday sounds, conversations, actions, interpreting what people mean, working out what is expected of them. Routine can help.

Routine can make sense of the chaos – it creates some sort of order and allows someone to know what is expected of them and at what times. Having routines in place can reduce a lot of stress and anxiety felt in this unpredictable, ever changing world. Sometimes it can be helpful to use timetables, picture boards, symbols, reminder notes to help the routine structure. In my experience with C, routine is something that comes naturally to him. He likes repetition and actually creates a lot of his own little routines whether it’s to anyone else’s liking or not; he made up his own school morning routine, he has his own trampoline schedule consisting of bouncing at set times of the day, he has routines he goes through when watching tv etc. And then today “but mummy we only buy fish on Fridays. I can’t do that today – it’s Sunday!”

A few Fridays ago, Z chose 2 pet fish for his birthday. After introducing them to the tank and setting up the tank environment he decided he wanted to add more fish. We happened to go on a Friday to get another fish. Today, a rainy Sunday, we thought it was a good idea to go a run to the pet shop to choose the last fish to complete the aquarium Z wanted. It wasn’t a good idea to C – he didn’t expect that to happen on a Sunday, wasn’t prepared for that to happen on a Sunday. His thinking is rigid, it’s not easy to just change the idea that pet shop days must be Fridays.

Is it annoying sometimes that his routines are so set? Yes! Is it frustrating sometimes that he can’t just “change” his routine? Absolutely. But is it causing harm to himself or others? No. So over the last few years I’ve learned (and I’m still learning) to choose my battles. Changing the routine without warning, preparation or explanation can cause way too much stress for him and then also us. If the set routine isn’t causing harm, isn’t damaging or isn’t stopping anyone else’s happiness then why change it? There will be many times where we will have to break routine and there will be days where we do have to deviate from “normal” and those days are hard but today was not one of them – no new pet fish today, that will have to wait til Friday!!

Dear nursery – part 3!

Dear nursery,

It is with mixed emotions I write this last nursery blog. This week Zac should be graduating from his pre-school year with his friends, all the boys & girls should be celebrating together, all the teachers feeling proud at their little ones graduating to school, all the parents & carers crying happy, proud tears. Instead we’ve been in lockdown & we’ve all missed our last nursery term, we’ve all been keeping busy at home with our families & we’ve been trying to fill our days with fun activities. But the truth is, nursery we’ve missed you & as a parent I’m so sad that I haven’t been able to thank you all & say goodbye properly. So dear nursery, this blog will have to do for now….

What a nursery journey our boy has had – we’ve completed 2 years & achieved more than we ever thought possible. With your hard work, help & care Zac has become an artist, a model builder, a story teller, an inventor, a dancer, a painter, a writer, a baker, a sand sculpture, a play doh modeller, a smart board expert. Over two years he’s taken part in trips to the library, a sports day, an obstacle course day, he’s played with his friends, he’s learned lots of language, he’s learned to count, he’s sometimes learned to listen instead of chatting!! He’s taken part in special themed days, he’s excitedly told me his news when we’ve gotten home.

We can’t thank you all enough for giving Zac the opportunity to be the same as his friends – you have adapted everything so he can take part, you’ve done extra risk assessments, you’ve filled in a mountain of paper work to allow his wheels to join him. You have supported him in everything & you have made sure he’s happy, made sure he’s comfortable, made sure he’s got what he needs. You have loved him. You have been a huge part of this chapter of his life & will always be included in his story.

We know you have all been part of Zac’s nursery journey but there has been a special person who has been with Zac for his full 2 years – mrs s. I cannot thank you enough for the way you have looked after our boy, the way you have made his nursery days fun, the way you have met his every demand, the way you’ve reassured him, the way you have helped him achieve all that he has. You will always be part of our family & I know Zac is going to miss you so much (he’s already asked if he can sneak you into school). And mrs mcC, as his teacher this year you have taught him so much & given him new experiences, you have always listened to his ideas & given him the freedom to go with them. Throughout lockdown your messages have been so appreciated & have cheered us all up and as you know he’s asked to sneak you into school too!! We have been lucky to have such a fab team at nursery & you are all appreciated!!

So nursery – it’s time for our boy to graduate, time for him to start a new chapter, time for him to move up to the world of school. Time for you all to welcome new children, time for you to make lasting impressions on new little lives. Please know there will always be a place in our hearts for nursery & I hope our Zac will always have a place in yours. 💙

Love Zac’s mummy x

And then you turned 5!!!!!

Today we celebrate another miracle milestone, another chapter of your story, another amazing achievement, because today you turn 5!!!

5 years old – you are full of life, full of fun, full of mischief, full of ideas, full of cheekiness, full of charm and full of chat.

5 years old – you never fail to make us laugh, you always know how to cheer someone up, you have wisdom well beyond that of someone who has just turned 5, you can articulate words so perfectly and you bring positivity to every situation.

5 years old – you have so much ambition, you have so many goals you want to achieve, so many places you want to see, so many people you want to meet. Your heart is full of love for life.

5 years old – some days you want to be batman, some days you want to be as strong as iron man, some days you are superman, some days you pretend to be Spider-Man. To me you are a hero everyday – the kind of hero that never gives up, the kind of hero that wears their heart on their sleeve, the kind of hero that is brave, the kind of hero that faces battles everyday but just smiles through them all.

5 years old – you are our miracle & today is all about you. 💙

Lockdown life at the Cams!

Life is not normal for anyone right now; we’ve been living in a state of lockdown for 9 weeks which has brought challenges and struggles for us all. We are used to living our life a bit differently from the normal with our two boys but lockdown has taken it to new levels!! So here’s a few thoughts on lockdown life from me………..

It’s ok to do what works for you and your family – some of us need strict structure and routine to thrive, some need to know what to expect and at what time, some need constants in their life to feel safe and secure. Some need the pressure of routine removed, some people can’t cope with knowing the whole day is planned out. Some need their days to be different all the time. Whatever you need to get through the day is ok – we’re all different and it doesn’t matter if your family is doing it slightly different to the family next door, as long as we’re all getting to bedtime happy then it’s ok to do what works for you.

It’s ok to feel sad – there have been many moments during lockdown where one of us in the house has felt sad; whether it’s seeing family on a screen and not being able to hug them, not being able to visit your favourite shop, missing your “normal” daily life and missing family celebrations. It’s ok to have a cry, feel sad – we don’t need to hold it together all of the time. It’s ok to express these emotions.

It’s not all bad – we’ve had lots of fun during lockdown too. We’ve done loadsa different projects, we’ve made story dens, we’ve played games, we’ve baked, we’ve went walks, we’ve laughed, we’ve made puppet shows, we’ve had chill time. It’s been nice to spend time together, it’s been nice to be at home. We’ve learned some important life lessons & we’ve learned to be stronger because of them.

It won’t last forever – sometimes it feels like you’re walking through a tunnel with no end in sight but these things pass, we just need to keep going. Each day is a new day & a sad day yesterday can change into a happy day the next.

It’s important to be kind to each other – we have no idea what others are coping with or what kind of day they are having. Flowers on the doorstep, home baking delivered, a text to ask how someone is or a wee phone call can make the difference to someone’s day or situation. We are all going thru different situations but we are all trying to get thru the best we can so let’s just be kind.

So that’s a few of my thoughts on lockdown so far, we’re just taking each day at a time and doing the best we can!! Hopefully some normality will return soon for us all but until then stay safe everyone & get to bedtime happy each day xx

Living in the eye of the storm.

It’s been three years since our lives changed forever. It’s been three years since we first sat in a hospital room filled with medical professionals. It’s been three years since we received that life limiting diagnosis for our youngest son. It’s been three years since the whirlwind began and we started living in the eye of the storm.

I often describe our daily life as being like a hurricane or a whirlwind; I mean our days are filled with hospital appointments, physiotherapy, feeding tubes, breathing treatments, medicines, phone calls, lifting, changing and that’s just for our youngest son. Throw in a diagnosis of autism for our oldest son and there’s more appointments, more phone calls, meltdowns, visual time tables, social stories, cool down time, set routines. This whirlwind whirls round and round constantly. It’s never ending and there’s never any real let up. I live in this whirlwind daily and always in fear that at any moment the storm will spiral out of control.

In the early days, as the whirlwind was just getting started, I remember one of our medical team saying “this will all settle soon”. The truth is nothing has settled, in fact the whirlwind has gathered more speed, picked up more force. What has changed though is my ability to live with the storm. I’ve learned to stay right in the middle – in the eye of the storm. The eye of the storm is where the calmest weather is, the lowest pressure occurs here and clear skies can be seen. It’s a safe place and it’s the place where life can be enjoyed. For me this means taking one day at a time, cancelling non-essential appointments if there’s too many in the one week, only taking phone calls at certain times, focussing on my boys and family life. I try not to look too far ahead and try to just live for the moment. The whirlwind can go on round about us, I know it’s there and I know if I come out of the eye, the calm place, it will do damage. Life is far happier if we stay in the eye of the storm, where we can be in control, where we can laugh, where we can see the storm but don’t let it affect our ability to live our lives.

To Zac on school enrolment day!

To Zac,

I can’t believe this day is here, time to enrole you for school. This is another milestone in your story, another step forward, it’s a day we weren’t sure we’d be seeing and so it was with a heart full of emotion that I handed in your forms.

The teachers are all excited, Caleb’s little brother will be joining him at the big school. They have been making preparations for you already – the new building will be fully accessible, there’s new equipment & plans are in place to make sure you have all you need. You are excited – you’ve been saying for the last few months that you can’t wait to be at school beside your brother. At 4 years old you are more than ready for school – you are a master at communicating, you love stories and arts & crafts, you love to be around people & you are ready to learn new things. The teachers are getting ready for you, you are ready, the truth is it’s me that’s not ready.

I’m not ready for this new chapter, I don’t think I’ll ever be ready to let you go off into the world of school but this is a miracle milestone and you are far too smart & clever to be at home all day!! I will worry, I will probably shed tears, I will have sleepless nights, I will wonder what you’re up to, I will wonder if you’ve had your medicines and your feeds, I will be thinking about you & if you’re comfortable, if you’re managing your work. I will be waiting incase the phone rings and I will be a bit lost without you in the house in the afternoons.

But I know you need this new milestone – at 4 years old you are already wondering what you will be as a grown up. You keep asking me if you’ll work in an office like daddy, if you’ll write stories, if you’ll be on tv and you always say “I just can’t decide mummy”. Well here’s what I think; I think you are totally awesome, I think you are funny, I think you are brave and determined, I think you have a fighting spirit, I think you always know the right words to say, I think you are a genius and I think school will give you so much opportunities & experiences that you can be anything you want to be.

So that’s it, you are now enrolled. We’re well on our way to you becoming a big school boy. I couldn’t be more proud of you and all you have achieved so far. For the next few months tho, I’ll enjoy our afternoons and your endless funny chatter because my heart has a few more months to get ready for this next chapter in your story. 💙

It’s raining cats and dogs!!Autism and literal thinking.

“Mummy what does that actually mean?” I hear this numerous times a day as Caleb tries to process something I’ve said or something he’s heard. That’s because people with autism have difficulties in understanding verbal and non-verbal communication.

Most of the language we use is actually non-verbal; we use facial expressions, hand gestures, tone of voice and when we do talk we tend to use a lot of figures of speech (phrases that have a different meaning to its literal definition). This, along with some other processing differences can make it very tricky for someone with autism to communicate effectively. Caleb, as someone on the autistic spectrum, can find it hard to see the unseen bits of information that go on around us all day. It is difficult for him to think what others are thinking and the information he sees is literal – it’s difficult to match that information up with a persons feelings. It’s also tricky to see the big picture – someone with autism will process little bits of information at a time and they will often miss clues that lead to the bigger picture. While these processing differences can also be strengths; someone with autism will often see tiny details, they may be able to solve problems/projects with small detail, it can also make every day communication a challenge.

Here are some funny examples of literal thinking that we’ve experienced with Caleb over the last few months:

The Christmas song “Santa baby” – Caleb hated this song over Christmas and he would constantly say “why are they singing Santa baby? Santa is very old, he is not a baby”.
When watching “toy story” one of the characters said “it’s raining cats & dogs”. Caleb asked me what that meant because rain is water and he couldn’t see any cats or dogs in the rain on the film.
“It’s freezing outside” – no mummy it’s 3 degrees. If it was freezing it would be zero degrees or below so really it’s just cold.
When playing a board game I told Caleb to turn the timer round. The 10 second timer was taking ages, I looked at Caleb – he was turning the timer round & round in his hands instead of turning it upside down like I’d expected he’d do!
When baking I asked if Caleb wanted to lick the bowl. Yep he actually took the bowl, stuck his face in & started licking the sides. Well I didn’t ask if he wanted a spoon to scoop the cake mix I just said “lick the bowl”.
On coming home from school one day Caleb heard a class mate say a rude word. I explained the word was very bad and that I didn’t want him to use it or call anyone that name. A few days later I heard him repeat the word while playing action figures. He was playing a baddie – “but mum you said it was a very bad word so baddies must say it??”

These are just a few funny examples that we’ve encountered but you can see how confusing it must be for someone with autism to work out every day what people are actually meaning and what people are actually expecting of them. In our house we always have to think before we just say an instruction and if Caleb doesn’t come back actually wearing his jacket then I know he’s taken my instruction “find your jacket” quite literally! “I did find my jacket, it’s on my bedroom floor” well I didn’t ask him to put it on or bring it downstairs did I?!!

The blur that was 2019!!

Happy new year from a different kind of normal!!! 2019 seems to have gone by in a blur for us and our life seems to be lived in a constant whirlwind as we raise our two crazy boys!! Here’s a few highs, lows & memorable moments from the last year:

Our little Zac has kept in the best health he’s ever had over this year – we have now managed our record of a full year with zero hospital admissions!! This is a miracle for us and although there have been a few periods of illness and worry, we have managed Zac’s care at home without the need for additional breathing support. Zac continues to receive his miracle medicine and we are seeing him gain strength as a result of his treatment and his daily physio exercises. He even took part in a few news reports about his medicine!! Zac manages nursery 5 mornings a week and is making great progress. He is included in every aspect of nursery and this year has enjoyed sports day, teddy bears picnic and a trip to the library. We have also welcomed “chas at home” into our house which gives us a little break every few months. Zac always gets up to lots of fun activities with his “chas ladies” and is well looked after while me & Craig can have a meal out or spend time with Caleb. 2019 saw Zac’s “make a wish” granted where he received a spa pool to do hydrotherapy at home. With the support of our amazing family & friends we were able to build a superhero hut to house his pool & build a changing area too. Over this next year we are planning to build a wet room and install a lift in our home so that all Zac’s care needs will be met. 2020 also looks to be the beginning of some discussions around spinal surgery for Zac – unfortunately, as Zac grows his spinal curve seems to be getting larger and altho we do all we can to prevent this it seems that surgery may be inevitable. Early in the new year, Zac will attend some clinics where his medical team will do various tests & assessments and some difficult discussions will be had. Zac faces challenges daily but he continues to do so with an incredible sense of humour, a smile on his face & a brilliant attitude!! Couldn’t be more proud of the little guy he is.

2019 saw us receive an official autism diagnosis for Caleb and again it was a long process with many months of meetings, assessments and appointments. Caleb has coped with many different situations over the year and he continues to amaze us with his academic ability, the quirky way he sees things and his insight into the different way his mind works. I took part in an autism course and it proved very beneficial in helping us understand certain things Caleb goes thru in every day life. We have learned to chose our battles this year and have some strategies that work for Caleb. He is learning to adapt and cope with a lot altho meltdowns are still a common occurrence in our house. For a few months this year, Caleb was part of a sibling support scheme ran by chas. He had a volunteer who would spend some time with him each week doing all the activities that he loved – this was amazing for Caleb and he loved having “his grown up” that was just there for him!! Caleb has celebrated many achievements at school during 2019 and also helped build Zac’s superhero hut. He continues to be his quirky self and is completely bonkers – couldn’t be more proud of the boy he is.

In May of 2019 me & Craig celebrated 11 years of marriage – we continue to work as a team through it all and our two boys have definitely made us stronger. I stay home with the boys while Craig works full time – we are very blessed to be able to work like this. As a family this year we’ve had a summer holiday, movie nights, trips to the park, days out, walks, weekend breaks at Rachel house, we’ve spent time as a family and made memories.

We are so thankful to everyone who supports us and follows our journey. We wish you all lots of happiness for 2020!! Xxx

It still catches you off guard!

We’ve been living our different kind of normal for three years now. In those three years we’ve gone through the motions of hospital stays, hospital appointments, daily breathing treatments, daily physio, tube feeding, lifting, changing. We are used to wheelchairs, profiling beds, changing equipment, medical supplies. Packing bags & trying to prepare for every eventuality has become second nature. We drive an adapted vehicle. Our daily routine is a bit different to the “normal” & while we try to do “normal” things there are some places/activities that just aren’t accessible. This is our life and has been for the last three years. Although I know our life is different, it’s our normal and it’s what we know now.

I rarely think about the “what ifs” or the “what would’ve” but even after living this life for the last three years there are still moments that catch you off guard. It can be a simple comment, a memory on Facebook, a photo, meeting someone, a conversation, a message – anything that reminds you that your life is different. These moments go on round about me every day & they rarely bother me, I focus on my boys and what works for us as a family but occasionally one of these moments will smack me in the face and I’ll be overcome with the pain, sadness, grief I suppose that our life is not the normal. It hurts sometimes. I guess it’s something that will always be there and these moments will probably always creep up when I least expect them.

The important thing for me is to not dwell on these moments, it’s ok to have a cry, it’s ok to feel upset, it’s ok to feel sadness but don’t stay in that place. Once it’s caught you off guard, deal with it, accept it for what it is, focus on the positives & move on. For every moment that catches me off guard I try to think of a positive about my life, I think of the amazing qualities my boys have & I think about the adventure we experience because our lives are not the normal!

Diagnosis #2 – accepting autism.

Wednesday, 11th September 2019. The day we received diagnosis #2. The day I’d been fighting for. The day I’d filled in a multitude of forms for. The day we’d had lots of observational assessments for. The day all the evidence was collected for. The day every other appointment was building up to. The day I knew diagnosis would be given. The day I was prepared for. The day I knew what the professionals would say. The day my heart felt a huge mix of emotions all in one moment. The day they told me my son is on the autistic spectrum.

I knew the diagnosis was coming. I’ve researched autism for a while now and I knew my son displayed many traits & behaviours consistent with autism. I knew that an official diagnosis would not change the amazing person he is but my heart still felt sadness when it was confirmed. Maybe it’s the fact that he’s now been given a label – I mean no-one ever wishes for a label, maybe it’s the fact that it’s now written down in black & white, maybe it’s because it’s another name to remind me that our life is not “normal” and won’t ever be “normal”. Maybe it’s because I have to face all the fears I have about my son not “fitting in”, maybe it’s because the worries about people not accepting him are now very real, maybe it’s because I know he will always face challenges just trying to be himself in this world that doesn’t understand him. But my heart also felt relief. Relieved that we can now access support, relieved that there is a reason my son does the things he does, relieved that I can explain his “quirks”, relieved that I can put things in place to help him cope with the difficulties he faces. Sadness, relief, fear, worry all mixed together in my heart that day.

He knew something was going on that day, he asked why I thought we had the appointment. I couldn’t yet tell him he was autistic, wasn’t even sure how to start explaining it. So I told him he had an incredibly, brilliant mind that works in a different way and that we’d went to see about it. My heart also felt pride that day – proud of how my son notices the tinniest details, proud of his gift with numbers, proud of how he faces the every day and proud of how he tries to handle the challenges.

Autism is different for every family; for us it’s lines of cars, lists of facts, the same tv shows on repeat, meltdowns, very literal, factual conversations, sensory issues, structure & routine. Autism pretty much rules how we do life at our house. Autism diagnosis is not going to change the person my son is and it’s not about him changing – it’s about those around him changing. It’s about trying to understand how his mind works, it’s about trying to see things the way he does, it’s about helping him cope with situations he finds difficult.

My son amazes me. He is often a hurricane of crazy energy. He is funny, loving, intense & totally bonkers. He is different. He has autism. But if you let him be the awesome person he is, he might just change the world one day.