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.

Now We Are Ten: A Letter to My Son

November 2018 marks a personal milestone for us as a family – Our Freddie, who has Down’s Syndrome, celebrates his tenth birthday.

So, this month I have written a series of three related posts reflecting on this: the first post is a letter from me to Freddie in which I tell him about his early days and compare them to where we are now.

The second is an open letter to the obstetrician who looked after me when I was pregnant with him, in which I share with her some of the things I have learned during my first decade of ‘lived experience’ as the mum of a child with Down’s Syndrome. The third post looks forward, towards what the next ten years may, or may not, bring us.

Happy Tenth Birthday, Freddie.

I find it difficult to believe that a whole decade has gone by since you came into the world, the years seem to have passed in the blink of an eye.

You were due to be born at Christmas, but actually arrived six weeks early, in the middle of November. Because you were born early, you were very small. All the baby clothes I had bought and put in the drawer ready for when you were born were too big.

Nana Jean had to go out and get some extra-specially tiny ones. Harry and Lucy couldn’t wait to hold you. I don’t think either of them had ever held a baby before.

You were the first.

I was very happy that you had been born, but it made me very sad that you were too poorly to come home with me straight away. You had to stay in hospital for six weeks.

I came to visit you every day and stayed for a long time. For the first three weeks you were in an incubator (a special cot that keeps early babies warm and safe), and after that you went to the children’s ward and slept in a little plastic cot that looked a bit like a fish-tank.

I stuck photographs of Harry and Lucy to the outside of it, where you could see them. Me, Daddy, Nana Jean and N’Auntie Brenda took it in turns to stay with you, day and night, so you were never alone.

You left the hospital on 1st January 2009 – the best New Year’s Day ever.

Now you slept in a basket next to my bed – but you soon outgrew it: you used to wriggle about so much that the basket would wobble and I was scared it would tip over and you’d fall out, so we got you a big wooden cot instead. Sometimes either Harry or Lucy would climb in to give you a cuddle.

They’ve both always been very good at comforting you, and very happy to do it. I hope it is because they remember how daddy and me comforted them when they were little. Now that we have moved to a new, bigger house, you have a new, bigger bed: a full-sized one just like Harry and Lucy have. It’s the poshest bed in the house.

I love it when you wriggle under your quilt at bedtime and say ‘Ooh, comfy!’ as you settle down for sleep.

A first I had to feed you every three hours, day and night, and it would take you more than an hour (that’s 60 minutes or 3,600 seconds) to finish your bottle. Then it would take me another hour to make sure I had enough milk ready for your next feed (I’ll explain about that when you’re older).

I must have been very tired but I don’t remember that now; I just remember being happy that you were home with us at last, so I could be with all the people I loved at the same time. You found it hard to learn to chew: I had to mash all your food until you were five years old.

I waited a long time to be able to treat you to a McDonald’s alongside your brother and sister. Even now, I still love just sitting beside you watching you scoff chicken nuggets, especially now that you have mastered munching and chatting at the same time – who cares about table manners?

I first started reading to you when you were still in the hospital.

I took some of Harry and Lucy’s old books and read them aloud while you lay on my chest under a blanket. You had a machine taped to your foot that measured how well you were breathing. You always got top marks for breathing nicely when you lay on me and could hear my voice.

If you were in your incubator and you heard my voice you would scream until a nurse took you out and put you in my arms. I’m glad you haven’t grown out of having cuddles with me yet. On some evenings now, though, it’s you who reads aloud to me. I never knew what order the planets are in until we read your First Big Book Of Space together.

And I would never have heard of a Giraffatitan if you hadn’t found them in your dinosaur encyclopaedia. We named the ones in the picture Geoffrey and Gemima. I have to remember that, because every so often you randomly ask me what their names are, when we’re walking home from school, or eating our dinner, or something.

You were one year old when you crawled for the first time.

It was Christmas day, and you managed to creep almost the full length of the living room in one go; that was your present to us. You began to walk when you were three-and-a-half. Lucy used to prop you up against the wall, kneel down just in front of you and let you flop forward into her arms.

Gradually she inched further and further away, so that the flop became a stumble, and then a step. It’s still her proudest boast – that she taught you to walk. Now we march to and from school together every day; we can even make it all the way into town.

Now it’s autumn we kick through the fallen leaves and look out for squirrels in the big horse chestnut trees that line the road. At least I look out for squirrels, you’re more interested in dogs. We can’t pass by one out for walkies without stopping to make a fuss of it, ask its name and age, and ordering it to sit, or shake paws.

Your first word was ‘Hiya’, and for a long time it was your only word.

By the time you started school you were using between 20 and 30 words reliably. I have lost count of how many words you have now, whole sentences full of them. Sometimes you stumble over your words and get them mixed up because your brain is going faster than your mouth can. You have so much that you want to say.

You understand so much more than you are able to tell other people about. That’s why I ask you lots of questions when we are walking home from school: I want you to practice talking about the things you have done and learned each day. I’m sorry that I don’t always hear what you say first time, and have to ask you to say it again.

I do that because the things you say are important to me. It makes me happy when you talk to me, even if you are saying no because I have asked you to do something you don’t like. It is good that you can tell me about what makes you sad, so that I can help you. We can talk about what we can do to make it better.

I love to hear about the things that make you happy, too.

Last year, for the first time, you were able to ask me for a book that you wanted, and we got it for your birthday. That was your First Big Book of Space. This year you have asked for another book about the Solar System, and you have waited a long time for it.

Remember we chatted about it on the bench beside the park; I told you then that it was three months until your birthday. But now November is here, and the book is ready and waiting in my secret hiding place for the big day. I can’t wait to read it with you, snuggled up on your bed.

The first ten years of being your mummy has been an adventure.

I don’t know what the next ten years will bring us, but whatever it is we’ll face it together, hand in hand, with a book and a blanket at the ready.

Autism, Epilepsy and the one-in-three Chance of Both

Epilepsy Awareness Month is during November and this will be only just over a year-and-a-half since James, our 16-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a last 18-months, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.

But let’s start at the beginning, mid-March in 2017, when something “unusual” happened with James at school…  I remember the ‘phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home.  In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher calling me said.  “It’s like he totally zoned out for about 30 seconds, his eyes were open but there was no response.  Like the lights were on but no-one was at home, then all of a sudden, he was back with us again.  He seems fine now.”

They kept an eye on James for the rest of the afternoon, he seemed fine and travelled home on the school mini-bus quite happily.

There were no further episodes, so it all was put down to James just ‘having a moment’ and was quickly forgotten…  We now know that what James actually experienced was an ‘absence seizure’, sometimes called a ‘petit mal’ seizure, a form of epileptic event, but more of that later…

Time passed, summer came and went (all too rapidly!), and autumn arrived.  One mid-October morning, we had helped James get up and get dressed; he was chilling out in his den while I went to the kitchen to get him some toast and a drink.

When I returned just 2-3 minutes later I found James having a full tonic-clonic epileptic seizure, sometimes called a ‘grand mal’ seizure.

The sort of seizure someone who knows little to nothing about Epilepsy (which was us) thinks of as an ‘epileptic fit’.  He was lying down, rigid, jerking, losing consciousness and dribbling.  It was probably the most frightening experience of my life, I am so thankful that James remembers none of it.

The paramedics were there within minutes, while a very kind 999 operator helped me to keep calm and gave me things to check and do to make sure James was breathing properly, that he was safe from banging his head, and that I didn’t pass out too.  James came round again within a few minutes, and although he then slept for much of the rest of the day, he recovered fully.

We were then on the journey to find out what had happened, and why…

It turns out that Autistic children are much more likely to develop Epilepsy than their non-Autistic peers, with studies showing that up to (or even over) 30% of Autistic children also develop Epilepsy (in comparison to about 1% of non-Autistic children).  Two key times when this can commonly occur is in the pre-school age (James missed that one), and in adolescence (James got caught then).

In talking all of this through with James’ Neurology Consultant, it became clear that James’ absence seizure in school, as we only then understood that it was, was linked and perhaps his first epileptic episode.  We also discovered that when James occasionally ‘jerks’ or ‘twitches’, it’s not him just shuddering or shivering, it’s a ‘myoclonic jerk’, another form of epileptic event.

We’re still novices in this area, but we’re learning fast!

Since this started, James has had eight tonic-clonic seizures, mainly in little ‘clusters’ of two or three over a few days, often when he is unwell and overtired.  We’re getting used to knowing when to be looking out for more ‘myoclonic jerks’ or ‘absence seizures’ during these times too.

So, this Epilepsy Awareness Month, have a think about your child or adolescent…  Are they Autistic?  If so they are up to 30 times more likely to develop Epilepsy too.  Have they ever zoned out, gone blank for a few seconds?  Do they sometimes twitch or jerk without reason?

Understanding these signs and seeking better awareness and knowledge of Epilepsy will help you and your child.

eek professional medical opinion if you are at all concerned, but don’t ignore any signs… the unexpected sight of your child having a full tonic-clonic ‘grand-mal’ seizure for the first time isn’t one you’ll forget in a hurry…

Let this month be an epilepsy awareness month for you.

Birthdays to Shame the Diagnoses’

This week we celebrated Lydia’s 3rd birthday.

What a joy it is to watch her grow and celebrate as she had her favourite people around her, gifts to unwrap and toys to play with, all enough to tire her out for an early and full nights sleep. As I watched her play and enjoy that everybody had come together just for her I saw something I already knew to be true.

She is going to do whatever she wants to do.

Just as with my oldest daughter (and her Mum) that gritty, steely and sometimes stubborn determination to do that which they set their mind to is evident. I realised that that is true today and it’s been true for her whole life as her birthday caused me to reminisce of the years gone by.

You see I’ve sat in rooms with doctors who like to emphasise their importance, I’ve sat there while they’ve planned out my daughter’s future and her expectations. They like to call it “diagnosis” or at least part of it, and I’ve sat with dread as they told me the future without the aid of a crystal ball and I was shaken to my very core.

Now I look back on those times and laugh, oh how I over-estimated those doctors and how I under-estimated my determined little warrior.

It’s true that what the doctors had to tell us had some value in helping us to manage certain things and take care of Lydia but when given an inch they take a mile. They crossed the boundary from helpful informant to the bringer of doom and the creator of barriers all the while Lydia was in the other room just waiting for her time to make them look a bit silly – She will do what she wants to do.

The same week we celebrated her birthday we had to renew the blue badge for our van because frustratingly we only ever get 6 months on her blue badge. Usually I go to get it but this time my wife went down to the council office with the forms, now when I go down to do these things its mostly straight forward.

People don’t make comments to me and nobody feels the need to go into conversations and details – maybe I just don’t have a very inviting face.

However, my wife always seems to get more hassle than I do.

More questions are asked, more conversations are started, and more stupid and insensitive comments are made. Anyway, while getting the badge renewed we found out the reason for the 6-month long badge’s – on the application for her first blue badge filled out by one of the community nurses we have it said that she would not live longer than 6 months.

This was news to us, but this was more comical and frustrating than upsetting as we have now had to get 6 of those 6-month badges and the next one won’t have that time limit. Even a week of celebration is not without its frustration as the woman taking our forms insisted on having a number from us on how long Lydia is going to live so that she can administer a suitable blue badge, well….

How long does anybody expect to live?

That lady may not have made it through the afternoon if I was there when she asked these questions of my wife.

As time has gone on we have come to learn to take what is valuable and ignore what is not from the people we have to work and interact with. I’ll tell you of the first time I decided we had to do this – It was in hospital, our closest main hospital in the first few months of Lydia’s life and we hadn’t really left the hospitals with her yet since birth.

She was in PICU on a ventilator and not looking good, we were exhausted, emotional and confused. We were asked to come into a small counselling room outside the ward away from Lydia and here we sat with Lydia’s nurse (A particular nurse who had become very dear to us and who cared greatly for Lydia), the head Neurologist, her leading Neurosurgeon and the leading consultant on the PICU that week (A woman with the compassion of a hungry wolf).

They told us how things were hopeless, how we should stop trying and that they don’t think we should help Lydia anymore.

They gave us all the medical talk and all their expertise without much empathy. I realised – these people may be qualified but they’re unfeeling, and they may seem like giants in this room and we feel insignificant and helpless but that’s not true. The best person to make decisions about my daughter is not the cold qualified professional but the people with the most care and compassion for Lydia and that was us, that was me!

So, when the Neurologist, Neurosurgeon and PICU consultant had finished I said, thank you for telling me the things that you know about, now can you give me a few minutes to tell you what I know about? I took out my bible and read 1 Corinthians 1:27-29 which says:

God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God.

All of a sudden, these giants in their own habitat became like children as they were clearly intimidated and unaware of how to respond to scripture, I explained that though they seem strong and wise and though I appreciate the ways in which they can help, they are not in control.

God can use the weak things and the things that seem foolish to shame them and that with respect I thoroughly hoped that Lydia would shame these doctors who offered her no hope to make it past the end of the day (and she has).

From that day on I have asked for people to help in the way that they can and nothing more.

To you who has had a diagnosis or that are crippled with worry for the fortune tellers of doom I hope you take good help but don’t exchange it for joy. Enjoy your children, celebrate their birthdays, they will do what they want to do our job is just to help them to do it, not to worry about anything else.

You’re The Expert

Most of the heart felt posts that I have read over the years are from parents of children who have some type of condition.  The brutal honesty of the posts is so refreshing, and I believe them to be cathartic.

I’m not writing to validate those thoughts or feelings.

I’m a pediatric physical therapist of 25 (plus) years, but I’m also the sibling of an adult with special needs.  I’ve experienced all that you’re feeling from different perspectives.

My parents are gone, so I am now the caretaker for my sister.  From the other side, I have had the privilege of working with families like yours each day, for over 25 years, hoping to make a small difference in your life and that of your child, with the dream of changing their future by starting at ground zero.

I’m the first therapist, the first set of hands that your child will learn to trust.  I’m the one who will point out the little changes I see in your child even though they still can’t lift their head or walk.  I clearly take my job very seriously, but I LOVE WHAT I DO, as most pediatric physical therapist do.

I’m always in awe of the bravery, empathy, maturity, beauty and innocence of the children with whom I work.

However, I am writing to share some thoughts about your child from another perspective:

Learning starts on day one.  Make sure that your child is an active learner.  They may only be able to put out 10% with 90% assist but, always remember that ‘neurons that fire together are wired together’, and this can only help with communication, learning and motor.

Everything that you see and report to your doctors and therapists means something.

A twitch, moving one side more than the other, constipation…EVERYTHING!!  It may contribute to intervention, or may help pinpoint a diagnosis. Those holy 20 minutes that you get a sit down with your specialists may not be your child’s best, or may not be exhaustive enough to discuss all of your concerns. Come prepared.

Check with your insurance benefits before making any high-ticket purchases, including orthotics, braces, adaptive seating and equipment.  Just because theoretically something should work, it doesn’t always work, first see how the device benefits your child, and always ask about the return policy.

There may be years of opportunities in the future to participate in a variety of therapeutic interventions.

There’s PT/OT/SLP/equine therapy, swimming therapy, craniosacral therapy, massage, exergaming…. make sure that you seek out services based on your child’s needs, availability to participate, desire to participate, level of enjoyment, chemistry with the provider, and appropriateness for their age.

Throwing the kitchen sink at your child will not make them function better or faster.  Space them out so that your child doesn’t burn out, and more importantly, so that YOU don’t burn out. You can clearly see whether your child is benefiting from your visits with a therapist.  Therapy is expensive, don’t waste your money.

PRACTICE and REPETITION are successful means of learning for EVERYONE.

If you see your child do something in therapy, try to simulate that in your home or in the community.

Try to find community events and nonprofit organizations that have sports and social events to match your child’s needs. That will be as important, if not even more important, than therapy in the long run.  It will help create an environment where your child is just like other children, and help you network with other parents, and it’s FREE or less than therapy.

It takes a village!

Make sure you and your interventionist (specialists, teachers, private and school therapists) are all in communication with each other. This will benefit your child the most.

No one person will push your child ahead, it is the combined efforts of everyone, carryover from one setting to the other, and working on common goals that overlap or complement each other that will help your child achieve their goals.  Hint: email is one of the best ways to keep a log

Ask lots of questions.  It’s not insulting to a doctor or therapist when you want to understand why they’re doing what they’re doing.  It means that you’re interested.  If anyone is insulted by that…. think twice about going back!

You know your child best, you can read their cues better than anyone.

You are the expert!!

Written by: Sharon Galitzer PT, DScPT, MS, CIMi

GoTo Fly: Virgin Airlines Australia Approval

As a parent of a strong warrior with additional needs, you soon learn to become a proud advocate. We are a family of four based in Melbourne, Australia and like so many other families around the world, our life changed dramatically the moment we received our daughter’s diagnosis.

Chiara is now five years old, I’m in awe of her strength of spirit and determination. Due to a rare brain condition, Chiara us unable to walk, talk and has a limited life expectancy. Yet the power of her potential is so much more than any diagnosis states, and I’ll always honour that as her parent.

I’ve blogged for years and advocated for her best life, yet the biggest example of the power of advocacy was with Virgin Airlines Australia and our favourite GoTo seat.

It all started just before take-off, Chiara was seated comfortably in the GoTo seat and as a family we were all relaxed and ready for the flight ahead. Then a staff member asked us to remove her from the GoTo seat.

We explained her medical and physical situation, that she was unable to sit by herself and required lateral supports to hold her body in an upright position. However due to compliance regulations we were not able to use the GoTo seat. As a result we had to hold Chiara for the duration of the flight.

So, our GoTo seat remained empty for the entire flight (aside from a furry friend – daughter’s toy) and we had to manage holding Chiara for the duration of the flight, which meant dealing with strong muscle tone and a frustrated little girl who just wanted to sit on her own.

GoTo-Fly-Virgin-Atlantic-Australia

The impact of this created so much unnecessary stress for our family, but most of all Chiara.

It might not look like much from an outsider’s view, but when you have to lift, carry, feed, change and all the other care required in raising a beautiful child with extensive physical and medical needs, it can be exhausting.

So, when situations like these arise, it’s so much more than ‘sorry, that seat is not allowed’. It’s the frustration and the lack of awareness and support for families and children living with a disability.

It’s the fact that many parents are up all night attending to their child’s complex needs. It’s the reality that parents are already dealing with a huge amount of extra requirements for their child. Let alone the freedom that the GoTo allows for children to be in their own space comfortably.

On the return flight staff supplied a harness, however it did not support Chiara’s body, her head flopped forward and there were no lateral supports to hold her upright.

Again, extra stress placed upon a child who is already dealing with so much in their day-to-day.

The only support I had ever seen Chiara fully supported in on a flight, was the GoTo seat, and I wasn’t about to give up on the possibility of having her access it in the future when flying. I became a mum on a mission to start a conversation about accessible travel, because if anyone was going to take it on, it would be someone as innovative as Virgin Airlines.

I shared my experience on social media, along with photos to highlight the need for the GoTo and just how beneficial it is. There were hundreds of responses to my original post from families sharing photos of their children and the struggles they also experienced when flying.

I was shocked to hear that many families said they didn’t even consider flying, simply because of the seating issues.

I was so thankful to hear back from Virgin Airlines who read my social media post and invited our family to their head office to discuss further. There were many phone calls and emails. I was told that it was going to be really difficult to get any kind of approval, many people suggested it would be impossible.

Yet I never let it stop me, I kept thinking about Chiara and how happy she was to be able to sit independently with the GoTo seat, something that most of us take for granted. I also thought about families who never travelled simply due to the seating issues for their children, and I continued to advocate and educate wherever I could.

Six months after my original post, and many emails and calls in between, I received a phone call from Virgin Airlines Australia that the GoTo seat had been approved. I literally burst into tears, it’s so much more than just a seat or just a flight.

It’s the way in which the world literally opens up for so many of us and our children.

Since Virgin Airlines Australia’s approval of the GoTo seat, my inbox has been flooded with messages from families who are booking their first holiday ever, simply because of this change. What a powerful impact, that families can travel with a lot more support, ease and flow.

Thank you again to Firefly for creating the GoTo seat, it’s literally opening up the world for so many!

Make Time to Be in Love

“We need to spend more time together as a couple”

How many times have you said that to your husband, wife, fiancé, partner?

It’s strange because SO many people believe that children bring you closer as a couple, and yes, there is of course that unmistakable bond that you both have a child together but the amount of strain that it actually puts on a relationship is something that you’ll only know when you have children.

Then you have a child with additional needs.

Scarily around 50% of all marriages end in divorce now but what’s even scarier is that it increases dramatically to around 80-90% of those who have children with special needs.

Children with additional needs, no matter what the diagnosis, take up a HUGE amount of your time.

It may be that you need to do physiotherapy, medications, help with feeding, speech, helping with your child’s daily break downs, they may have anxiety.

They may not be able to do anything without you there, they could have physical, mental, emotional needs…

You may be up ALL NIGHT with them.

So where does your partner fit in? How can you possibly have time for someone else?

It’s hard, very hard and it really does make you question your relationship, because a relationship shouldn’t be hard, you shouldn’t have to make an effort, it should just come easy because you love each other!

That’s the thing, the love is still there but you often feel like the relationship is not. You can’t go on date nights like you used to and let’s face it you’re too worn out to really make an effort anymore.

However, relationships can still work!

You will have to make more of an effort but it’s so worth it! Think back to how you both felt when you met each other and you might have to dig deep but try and remember those butterflies you once got!

You know what, even if you have to set an alarm on your phone every day to remind you to send an “I love you” text to your partner then do it!

Love is so important and not just between you and your child but also between you and the person you fell in love with. It’s so easy to forget about each other but don’t forget to make time to be in love.

Messy Play

I always get lots of interest in all of the messy play I do with Ethan.

I love thinking up new things for him to explore with.

I have a childcare background which encouraged my love of messy play, but you really don’t need this to create easy, fun and accessible play at home.

The benefits of messy play for our children are huge. Messy play helps to encourage fine and gross motor skills. It can help movement in hands, arms and feet. It can be used to decrease sensitivity.

Messy play can help increase heightened senses.

Here are my top tips for setting up a messy play session:

1. Grab a big mat, tray or bowl. I have a range of different things I use. The ones I recommend are; tough tray, flexi tub, consortium tray and asda mixing bowls.

2. Throw out your inhibitions! Wear old clothes, cover the floor or better still go outside.

It doesn’t matter how messy it gets!

3. Choose your ‘messy’ item. They don’t all have to be wet and gooey. There are lots of dry materials that are great fun. Why not have a look on Pinterest for some fun ideas.

Our favourites for messy play are;
* shaving foam
* jelly
* dried rice, pasta or lentils
* water
* gloop (Cornflour and a little bit of water mixed together)
* aqua beads
* breakfast cereals e.g. rice krispies, cheerios or shreddies
* leaves, sticks and conkers

But really the possibilities are endless!

4. Add optional extras. These are to enhance the child’s play.

They allow for the imagination to be used.

I often have a theme in mind or use my child’s interests at the time.
Here are some ideas to add to your messy play;

* plastic balls
* bricks
* pots
* play people
* gems
* kitchen utensils
* glitter
* animals
* cups, spoons and bowls

5. Have fun – let your child do whatever they want or can do.

There really is no right or wrong way to do messy play.

Allowing freedom to move will allow your child to increase their independence and learn about the world around them.

Enjoy having some fun with your children it really is fun for all the family!

What a Four-Minute Seizure is Like

It was a beautiful summers morning as we all awoke in a caravan on the west coast of Scotland.

You were awake first, as you always are, and I sat with you watching CBeebies on the TV while you played one of your games on your iPad.

Nothing seemed different. You were making your usual noises and flapping happily.

It was looking like yet another very warm day and I was planning in my head what fun we would get up to. Would we get the paddling pool out again, or go for a swim on site or have an adventure in the surrounding area? We had already been here a week and everyone was so happy and relaxed.

Once dad and your sister woke I started breakfast. You requested your usual sausages and mash and beans and I was happy to accommodate. I dressed your sister and gave her breakfast as you sat in your usual spot with your iPad in your hands about to eat.

Suddenly we all heard a bang.

It was loud and sudden and I turned from the kitchen to see your iPad on the floor. I saw the iPad first and you second. I thought you had dropped your iPad and you were picking it up. Then I quickly realised you were lying on the floor.

I thought you had fainted so immediately pulled the table away.

Something was off. Seriously off.

Your back was arched, your body stiff, your eyes flickering.

I bend down to be near you. Your arms were shaking though stiff and rigid. Your head was almost bouncing off the ground. Stiff. Rigid. Lifeless yet shaking rigorously.

‘He’s fitting’ dad shouted.

Your sister screamed.

I sat over you silently.

The shaking increased and got quicker. Your head tipped back and your eyes rolling. It was like watching everything in slow motion.

Quick thinking, your dad began timing it.

Your sister curled into a corner of the couch with silent tears running down her face, rocking with fear and panic.

I wanted to be with her but I couldn’t leave you.

Your mouth was foaming, your arms thumping rhythmically off the ground, your legs shaking.

Time fell silent.

Helpless.

Terrified.

Frozen in fear.

What was happening to my son forever etched in my memory like a horror film on repeat.

At what point to do you call for help?

Then I noticed blood.

I had already grabbed a nearby towel to try and protect your precious head as you banged it continually unconsciously against the floor of the caravan.

Blood was now oozing out of your foaming mouth as I realised you had bitten your own tongue mid seizure.

You had been silent up until now but suddenly you were moaning and doing a sort of half cough half wrench and I was terrified you were choking on your own vomit.

‘Stop it Mum, stop it Mum. I can’t watch any longer’ came the screams from your traumatised sister in the corner.

Except I couldn’t stop it.

I couldn’t make you better.

‘That’s two and a half minutes now and counting’ said your dad as he continued trying to stay calm whilst his only son was mid seizure with blood and foam coming out his mouth and eyes now staring blankly ahead.

I remember the neurologist mentioning 5 minutes.

We were half way there.

The vibrant shaking was slowly easing. Your arched back now beginning to straighten but the seizure wasn’t finished yet.

For the next minute or so you writhed in pain and distress, shaking as if so cold on one of the warmest days of the year.

Your eyes fixed and dilated. Now in the recovery position your body exhausted but still slowly shaking and your wrenching as if about to vomit continuing.

White as a sheet, a shadow of the child who had been sitting waiting for breakfast just ten minutes before.

It ended as suddenly as it started. Like someone instantly pressed the stop button.

Just like that. Over.

One final cough and that was it. You lay there breathing deeply eyes now closed exhausted thoroughly from what turned out to be a four-and-a-half-minute seizure.

I knew you were ‘high risk’. You had had smaller seizures before but nothing like this. Ten days prior you had been diagnosed with epilepsy and were due to begin medication when we got back from holiday.

That Wednesday everything changed.

Four and a half minutes that felt like a lifetime.

I will forever be grateful to the amazing epilepsy team who have supported us and to my son’s neurologist.

Severe nonverbal autism, neurofibromatosis type 1, vision impairment and epilepsy are a hard combination to live with.

You have had a few seizures like this since but thankfully medication is helping.

Thankfully, because we are still dealing with the trauma that four and a half minutes left on us all.

Epilepsy is much more than seizures. It’s living with the fear, the trauma and the heartbreak of seeing someone you love go through minutes of hell and you can’t do anything to help.

It’s awful for everyone.

Four and a half minutes. Not long really but forever when it’s happening to you.