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

 

Goodbye world of “real” work.

For the last few years I have gone to “real” work once a week to keep myself in the “real” world. As a busy mum to my two crazy boys I thought that having a day away from the house where my mind wasn’t consumed by appointments, phone calls, treatments and demands was a good idea. And in the beginning it was a good idea but I’ve struggled for the past few months and so this week I worked my last shift as “Amy the pharmacy assistant” and said goodbye to the world of “real” work.

When Zac was first diagnosed I was working two days a week in the chemist but the appointments quickly piled up and took up most of my week days plus we spent so much time at hospital during periods of illness that I had to reduce my working hours down to one day. This one day was an escape – a day to be me, a day I could use my brain to focus on something other than boys and a day I could contribute to the household finances. I was lucky enough to work with a group of lovely ladies who supported me constantly; they gave me company & chat and allowed me a break from the everyday. They let me hear that life goes on outside of my different and I enjoyed the time away and felt a sense of doing something other than being mum.

However, as the time has gone on it has become more difficult to do my one day of “real” work; the organisation that goes into leaving the house for one day is like planning an expedition, the appointment lists get longer and longer, the phone calls & messages are never ending and in actual fact my one day away from the house was stressing me out more than ever! Instead of giving me a break my mind was going into overdrive thinking about the things I’d need to do when I got home, instead of feeling a sense of achievement I felt a sense of panic at what I had missed and still needed to catch up on. I was coming home exhausted and it got to the point where I felt it wasn’t beneficial to anyone for me to be at “real” work.

So I’ve made the decision to leave the world of “real” work and focus fully on my boys. It feels like a huge relief. Am I worried about losing my sense of identity? Am I worried that people will judge me for being full time mum? Am I worried that I might be driven insane at home? Am I worried that my brain will only be concentrating on all things boys? Yes I suppose I am worried about all of those things but right now I feel it’s what’s needed for our family and I have a few ideas which I’m looking to start up in the new year but for now I’m taking some time out to just live our “different kind of normal”.

*thank you to the loveliest ladies at work who helped me through every Wednesday & constantly supported me & my boys. Your chat & company made it all easier 😊

*thank you also to my amazing husband who continually works hard in the “real” world so that I can be at home with our boys – you really have made my dreams come true 💙.

Why is He in That Chair?

Just a few weeks ago we celebrated the miracle milestone of Zac starting nursery.

Having SMA type 1 meant that this was a milestone we did not know if Zac would see and although it was definitely an occasion to celebrate, it also brought feelings of fear and anxiety for me as a mama.

Zac was diagnosed at 17 months with SMA – a neuromuscular, life limiting condition.

Since then I’ve gotten used to the stares, the questions and the interest in my son’s life. I’m okay with people asking most things and I like to answer as honestly and as openly as I can.

I don’t mind people asking about Zac’s feeding tube, his physio routines, his hospital visits or his treatment but I do find people asking about life expectancy is a step too far.

I can answer these questions as a mum.

I can choose which ones to answer in detail and which ones to ignore and I can choose to protect Zac in my answers but I was afraid nursery would bring questions that Zac wouldn’t be able to answer and that it would also cause Zac to ask his own questions.

The day for starting nursery arrived and I wheeled Zac’s bright green superhero wheelchair into the foyer and then I transferred him from this chair into his big blue nursery chair.

I fitted on his tray so he could access the toys and we were good to go meet the other children.

“Why is he in that chair?” one curious little boy asked.

I answered simply “Zac needs his wheels to get around the nursery as his legs aren’t strong enough”. I waited for the further questions, waited for their reaction, waited for the curiosity to think up something else but all that followed was “oh do you want to play”.

In that single moment I saw a group of children who didn’t need to question and they didn’t need answers – they simply accepted Zac for who he is.

We’ve been at nursery for a few weeks now and since that first question there have been no more.

Zac’s chair is always surrounded by friends to play with; the children excitedly bring him cars, trains and building bricks to play on his tray.

They don’t question Zac’s ability and it’s almost like they instinctively know; during pumpkin carving a little boy came over to Zac and helped him roll the pumpkin when it was his turn, a little girl brought Zac the small light weight trains because in her words “Zac has tiny hands so likes tiny trains”.

I see these lovely children accepting Zac every day.

They don’t need to know what his condition is, they aren’t interested in his medication, they don’t get weighed down by worries of his future, they just see Zac and want to play and have fun.

I’m sure as Zac gets older there will be questions from his friends as they start to realise he’s different but for now it makes my heart very happy to know that Zac is accepted for Zac, he’s accepted for his different kind of normal – no questions asked.

Remember remember the month of November.

I love November; the dark cosy nights, cold crisp mornings, fireworks, autumn leaves and smells of gingerbread, cinnamon and toffee apples.

But two years ago, November changed our lives forever.

It’s now a month I won’t just see for all the seasonal things I love, no, when November comes around now it marks our diagnosis month.

November 2016: We had been going through the motions of hospital appointments, waiting lists, referrals, blood tests and more waiting lists trying to figure out why our little Zac wasn’t meeting physical milestones and why he seemed to be getting weaker with every month that went by.

Things then turned very serious when Zac took ill with a chest infection in November.

We were admitted to hospital, Zac was on a lot of breathing support and strong medication and we set up camp in the ward.

An army of doctors and specialists came to see Zac and on the 16th November 2016, we heard the three words that changed our lives forever: Spinal Muscular Atrophy

Zac was diagnosed with SMA type 1 and we were told this was a life limiting condition.

Zac’s prognosis was very guarded and the future was uncertain.

I felt completely numb as I tried to take in this news.  I looked at my husband – his face a picture of devastation. I looked at my perfect Zac.

I knew that our lives were changed forever and now our focus was on making the best and happiest life for Zac and his big brother who was waiting at home.

We drove home from the hospital in silence – both of us filled with a heavy heart, a sadness, fear at the uncertainty and now we had to tell our families.

There were two weeks left of November and in those two weeks we had specialists visit our house, the phone rang constantly, appointment letters arrived almost every day, equipment was delivered and we barely had time to breathe.

I remember one of the health professionals say to me “this will all settle down.”

In those two weeks me and my husband talked, cried, researched and we tried to function in our new daily life.

The days were long and dark as we tried to make sense of it all.

So, November has come around again – It’s been two years since that November and I can’t believe how far we’ve come.

We have gotten used to our new normal – I don’t think things ever settle down, I think we just get used to dealing with the everyday.

I still love November.

It’s the month that made me stronger, It’s the month that made me braver, it’s the month that made my faith unshakeable, it’s the month that led me to meet incredible people and it’s the month that started my journey to my different kind of normal.

Hello social stories

So it’s been another busy week in our different kind of normal and this week I attended a lesson in social script writing. I went to learn this technique to help Caleb who is most likely going to receive a diagnosis of being on the autistic spectrum. Social scripts are a strategy that Caleb can use to help him understand certain situations that he finds difficult. They describe what people do, why they do it and how they usually respond. This should hopefully help Caleb piece together bits of the puzzle of social situations that he finds very difficult to do himself. They are a visual aid that we can go over & over until Caleb can begin to make sense of the situation and manage the situation better.

So where to begin?? There are many social situations that Caleb finds difficult ranging from holding a hand in the supermarket to learning it’s okay to make mistakes, from realising you don’t have to be first all the time to understanding that people like to talk about different things. But the thing that Caleb finds most difficult of all, the thing that is catastrophic to his whole world, the thing that will trigger a mammoth melt down every time is people being late!! You see Caleb sees his world in time; time to get up, time to get dressed, time for school, time for tea, time to play etc. These times are all specific and his day runs by these little blocks of time that only he sees. If one of these blocks of time get knocked out, his whole world is wrong. If lunch is two minutes off schedule, his whole afternoon runs out of sync. You might say “just keep being late and he’ll eventually learn”. I’m afraid it doesn’t work like that – Caleb’s brain is wired completely differently – he’s a genius at certain things & he fascinates me with his number abilities but it doesn’t matter how many times I would do something late the catastrophic reaction is the same every time! So I decided to start our social story technique about being late!

If you are planning to visit us and you tell us a time I usually prepare Caleb for what’s happening. If you are late you are very likely to have Caleb scream at you at the door “why are you late”, “you said you would be here at….”. His reaction will seem extreme and you will probably see a “rude brat” in front of you. What you don’t see are now the blocks of time in his head have been thrown into turmoil, there is total chaos in his time schedule and he can’t quite get the time blocks to line back up. So over the next wee while we will be working on understanding that it’s actually ok to be late and we’ll be learning how to cope when these wee time blocks are thrown off schedule and we’ll be learning how to get them lined back up without needing to have a big melt down. The key word is learning – we’ll be trying our best but it may take a while so until then please be understanding of us and our different kind of normal.