A Trip to the Hospital

He’s had temperatures, seizures, drowsiness and has been unable to do any therapy for the best part of three weeks.

It’s been tough, and the boyo is totally fed up with it all.

After numerous trips to the GP, we were sent to Hospital, straight onto ward to have him checked over there, who in the end sent us away with Suppositories to help manage the temps and sooth his throat.

To make things easier for me I have put together a little Hospital Passport for Zachariah, inside there is all the information the Doctors need to know about his condition, his medications and his needs, likes and dislikes.

The purpose of this document is to relieve stress from me in an upsetting situation and for them to have accurate information (I don’t know about you, but I sometimes forget what Zachariah’s conditions are and I always end up pronouncing them wrong anyway).

His passport is there to make life easier for all.

It frees me up to discuss why we are there at this particular moment. So I handed it straight to the Doctor who walked to her station and began to read.

It wasn’t long until she needed her google app to help her as Zachariah’s conditions are quite rare.

She then came back over and started asking about Zachariah and to my annoyance she asked questions that were quite clearly covered in the booklet like, ‘Can he talk?’ and, ‘What can he do?’

I mean, what was the point in me spending all that time and effort creating a tool to help things go smoothly when at hospital if you don’t read it properly but instead bombard me with questions I struggle to answer?!

So, after going through all the basics, we eventually got to the point of why Zachariah was there and the wait for the Registration began.

A dear friend had driven us up that day so whilst Zachariah slept we enjoyed a little picnic and natter to brighten the mood. The nurses’ station was literally opposite and we could pretty much hear all the on goings as they nicely shouted to one another in conversation.

The next part of the story is what made me write this blog today, it’s surreal and it actually made me and my friend have a little bit of a giggle.

A group of young, smart looking student Doctors came racing in and hovered around a lady at a computer screen.

The lady then began to discuss a patient and told them the patient had an underdeveloped brain, she then started asking questions such as ‘Do you know what Agenesis of the Corpus Callosum means?’ To which one of the students eagerly raised his hand and told her quite confidently it was that the bridge connecting the two sides of the brain was missing.

It was here I was sure they were discussing my son.

I mean I am all for learning, researching etc., but to do it so close to where we are sitting and to do when we are there at such unfortunate circumstances felt a little insensitive.

I explained to my friend that I would have been more comfortable if they came over and spoke to me and my sons condition, I understand that it is vital for Doctors to get as much experience and knowledge as they can, therefore I am happy to help.

It just felt so bizarre to have them so close having a lesson, as they weren’t the professionals that were seeing to him nor did they need the knowledge to help him get better.

I’ve written this just to speak about my experience at hospital, it’s a diary account, it is not at all a rant to the hospital or the NHS, but simply an insight into the eventful life as Zachariah’s Mummy.

Much love xx

Why I Became An Occupational Therapist…

I remember meeting my fellow Occupational Therapy student friends for coffee that afternoon and we all just sighed with relief and happiness that our hard work had finally paid off.

I was over the moon!

I was so excited to begin my journey as an OT.

I really wanted to help improve quality of life through helping a person achieve their goals, by increasing their level of independence and ability to participate in daily activities.

My passion for Occupational Therapy came about when my grandfather became ill and required the assistance of carers, OT’s, physiotherapists and dieticians.

On a daily basis I watched them attend to my grandad. They provided equipment to assist with his walking, washing, sitting, and transfers.

I realised that I would love to work in this area of helping people maintain or regain independence after an accident or illness as I could see my grandad’s quality of life slowly improving.

I began working as a community care assistant for several years which I really enjoyed before taking the plunge and stepping inside the doors of a hospital.

What an eye opener, I soon found out Occupational Therapists did a bit of everything.

I worked alongside and observed many Occupational Therapists who worked with children, adults and elderly people.

As I got more exposure to the various activities and equipment that O.T’s could provide I started looking into it as a career.

I sat my Health Professionals Admission Test (HPAT), passed and got accepted onto the only Occupational Therapy course within Northern Ireland.

We learnt a lot within the course and got various placement opportunities to explore which area we would enjoy best.

There are so many….. I am still trying to figure that out!

Two years down the line I have dipped my toe within the national health system in community and hospital settings and am currently working within the private sector.

Although I am at the beginning of my Occupational Therapy career so far I have found that no matter what area you work in, Occupational Therapy is still a very rewarding and enjoyable career.

It’s The Most Magical Time of the Year!

Now that I’m a mummy, I want to start our own traditions.

I want the magic of Christmas in our own home and want to do lots of fun activities leading up to the big day.

This week we visited a garden centre, they had done it all up with beautiful displays, and delicately decorated trees, it was just so lovely.

Zachariah loved it, all the lights and tinsel was just the cheer up he needed that day.

But then I found myself getting tears in my eyes as I looked at all the props they had to create the magic I had encountered as a child.

There were stencils to spray Santa’s boot on the carpet, lots of different wish list packs for children to write to Santa with, reindeer droppings and so much more. I found myself getting upset as Zachariah would not be aware of all these things, I felt myself grieving once again over something my son would be missing out on.

It got me thinking about what I could do to give Christmas that sparkle and fantasy for Zachariah to enjoy.

Now it’s really important to me to remember the true essence of Christmas, celebrating Jesus, new life, joy and hope, but it’s also important to me to have family traditions and excitement.

I then started thinking about what Christmas meant to Zachariah, looking through his eyes made me see that Christmas was bright, it was full of flashing colours, it was about singing carols, and it was a time to play with fake snow, bells and exciting tinsel.

By looking through his eyes I could see that Christmas was already magical and I did not need all the props and letters to Santa as he had everything he needed.

All of a sudden I wasn’t feeling so upset anymore but wanting to be more appreciative of what we have.

Zachariah loves Christmas, last year he was so content just enjoying all the lights, glitter and noise.

Why do I get so caught up on the things he will not encounter but instead just focus on the fact that he is so easily pleased just to be part of the fun?

He is happy, he’s fortunate to live in a safe place, he is blessed to have lots of family and friends surrounding him who fuss over him.

He is unaware of the things I am so concerned he is missing out on.

Those emotions in the garden centre will most probably not disappear, but I can make a choice to look above them by cherishing everything Zachariah does have this Christmas which is love, and lots of it.

Focus on what matters this Christmas.

The GoTo Shop Cart is now available in the US!

The GoTo Shop Cart which is transforming shopping trips for special needs families in over 1,500 UK stores is now available in the US.

Firefly by Leckey has joined forces with The Peggs Company, one of the largest shopping cart distributors in the United States to bring this specially adapted shopping cart to the United States.

Claire Smyth, previous Firefly Campaigns Manager, ‘We’ve always known that the GoTo Shop cart is needed in the US. Since the cart launched in the UK we have received hundreds of comments on social media from our American followers asking us to bring it to the States.

We are so pleased to be partnering with The Peggs Company to make this wish a reality.

The importance of the GoTo Shop cart cannot be underestimated.

We have a strong community at Firefly and parents are continuously sharing the challenges they face with simple tasks like grocery shopping. It is the simple products that improve everyday life which are the most effective.’

GoTo Shop Cart has been designed to make shopping easier for parents and carers of young children with disabilities and more comfortable for the child.

The shopping cart seat includes a secure and adjustable 5 point harness, adjustable head and lateral support, a padded seat and open front for easy transfer.

We’re calling on our US families to get behind the campaign by downloading the special US Campaign Leaflets and handing them in to your local stores to make store managers aware that the GoTo Shop Cart is now available in the United States.

You can also get your friends and family involved by asking them to use the specially worded ‘Friends of’ leaflet.

See these leaflets and more here!

We’d also love to hear from you if you’d be interested in taking part in future trials, blogging about the GoTo Shop, or being a case study.

Don’t forget to use the #Everysupermarket if you are posting about the campaign on social media.

A Loaded Question

The first simply questions whether or not your child’s diagnosis of Down’s Syndrome came as an after-birth shock, or whether you were prepared in advance.

It acknowledges that prenatal screening is a choice, but with, perhaps, a hint of prurient curiosity as to whether there really is anyone who would choose to continue if they knew in advance.

The second also acknowledges choice, but wonders whether you chose not to test, or were let down by some fault in the screening process. It suggests a hierarchy of empathy: those who fell through the holes in the medical science safety net are deserving of it, but not those who declined screening.

In short, it wants to know whether you are responsible for your own situation.

The third denies choice, as it assumes that, because test exists and is (widely believed to be) now infallible, that there is only one, reasonable, responsible course of action – termination.

It seeks to lay blame.

Society expects that people will test and terminate, any who refuse to do either of these things are seen as unreasonable and irresponsible, selfish, even.

It has no empathy for anyone who has a child with Down’s Syndrome because it asserts that they made the wrong choice.

I don’t have an issue with prenatal screening itself: that is not the problem.

It is the societal attitudes and pressures surrounding it that concern me.

The prevailing narrative is that having a child with Down’s Syndrome is the worst thing that could possibly happen, and that the purpose of prenatal screening is to eradicate the problem.

Some countries have declared that they will be ‘Down’s Free’ in the near future.

Since Down’s Syndrome is not hereditary*, but a naturally occurring chromosomal arrangement that appears in all races, and has done so throughout history, the only way for any country to be ‘Down’s Free’ is for it to make prenatal screening and termination ‘compulsory’, not necessarily by law, but by societal expectation and pressure. Peer pressure, if you like.

This is facilitated when the status quo perpetuates outdated, negative stereotypes of the condition and those who have it, and by suggesting that they are a drain upon society but make no contribution to it.

Suddenly ‘test and terminate’ becomes the rational, the responsible, the only, thing to do, as it appears to benefit not only the individual family but all of society.

Lives are measured against each other in financial terms, by their potential future cost to the state in terms of health and social care.

Those found to be potentially more expensive than the average are then compared again, not to another human this time, but against the cost of a prenatal screening programme.

Lives are commoditised; it is their financial profile alone that decides whether they are considered worthy of keeping, or should be disposed of.

None of this takes account of differences beyond the number of chromosomes.

Not all people with Down’s Syndrome experience ill-health, or require social care.

When they do, then the slightly lower life expectancy of those with Down’s off-sets that. In any case, their families pay tax and national insurance, indeed, some adults with Down’s themselves work, and, presumably, pay tax and NI.

If we’re talking about cost-to-society-versus-contribution-made, then perhaps we should start screening foetuses for genetic predisposition to criminal behaviour – the cost of their potential incarceration must be huge.

But that is neither possible nor ethical, nor even desirable: because it’s eugenics.

As I stated above, I am not against screening per se.

But it seems to me that a potential benefit of prenatal screening has been largely overlooked.

As well as offering safe, early detection for those women who would choose to terminate, it could, and should, also be marketed and used to enable practitioners to offer extra-vigilant, possibly even tailored, antenatal care to those mothers who choose to continue with the pregnancy. But this isn’t happening.

Perhaps it is deemed too expensive.

The reality of life with Down’s Syndrome in the twenty-first century is that a significant number (you might say even the majority) of families with a member who has Down’s report that they enjoy good quality of life.

Ninety-nine percent of adults with Down’s class themselves as content with their lives, and ninety-seven percent of siblings report being proud of their brother or sister with Down’s.

Nobody is denying that we face greater challenges, sometimes considerable ones, with seventy-nine per cent of parents reporting that they have a MORE positive outlook since parenting a child with Down’s, there is clearly something deeply life-affirming going on in these family relationships.

Although there are many things my son cannot do that other eight-year-olds can, he gives as much as he receives, and has made me a bolder and happier person.

Oh, and many of the proud siblings I mentioned go into the caring professions – and that, my friend, is surely a tangible benefit to society.

In her documentary, ‘A World Without Down’s Syndrome’, actress and writer Sally Phillips said ‘… if we have a society that is unable to care for people, the problem is not the person’.

But society, it seems, does not like to be told that it is wrong.

*except for a very rare form, Translocation.

When a Trolley is Much More Than a Vehicle to Put Your Shopping In

I was fortunate to be blessed 8 years ago with twins.

They look cute and adorable but trying to get out the house was challenging.

There isn’t much you can safely carry while pushing a twin buggy but I always knew whatever supermarket I chose to go to I would be able to use a twin trolley. First I used the twin baby ones and later the twin side by side seats.

But then I started to face problems. My son wasn’t meeting milestones and as time went on it was obvious he was having significant difficulties.

The place I spent most of my money in every week became a place of dread as I struggled to find a suitable trolley for a three year old who could not walk and who had seizures.

For years I could only enter a supermarket if I did not have my children with me.

I was forced to do internet shopping as there was no trolley that met my son’s needs. I could not push his wheelchair and a trolley around together and a basket holds so little.

It was life restricting for us all.

Can you imagine needing bread and milk and having your child with you but not being able to go inside the supermarket simply because there is no way to get him round the store and hold your groceries?

Supermarkets are one of the most frequented shops of all, yet often families with disabled children are excluded simply because there is no trolley to allow them to shop.

Last week however I popped to my local Asda while my son was at school. I picked up the essentials we needed that day and on my way back to the car I stopped.

I looked at something as I put my standard shallow trolley back to collect my pound coin and I felt tears well up in my eyes.

I could have ran in and kissed the manager then and there!

I could have jumped up and danced around in circles with joy.

Instead I put my bags down for a second, got out my phone and took a picture. As I walked back to my car the tears fell silently.

This isn’t just a trolley to me. It is much more than a vehicle to put my weekly shopping in.

This picture represents inclusion, breakthrough, even relief.

This firefly trolley means I can finally get my son safely into the store with me whenever needed.

It means my lifestyle can be adjusted to include my son in a place he has been restricted in entering for years.

It means safety, comfort and support for him and freedom for me.

Today I could have chosen a shallow trolley, a larger one with seats that I used to use all those years ago when my twins were small or even a basket.

For ninety nine percent of the customers this is the choice they make every week. A few may require motorised trolleys or ones that clip to a wheelchair. These have all been around for years.

So why have I had to wait so long for this life-changing trolley?

I am not the only parent in my town with a disabled child who would benefit from this firefly trolley.

But I admit I may be the first one to cry at the site of a trolley.

Thank you Asda. It really is much more to me than a vehicle to put my shopping in.

The next time I visit I can assure you that trolley will have my beautiful brown eyed 8 year old boy in. He can’t speak but I know if he could he would say thank you too.

The T-Word

I admired Sally for stepping out and filming this documentary as the things she had to listen to would have been so heart-breaking to hear.

Now, my son doesn’t have Down Syndrome so I cannot speak as though I have much insight, but I have had the honour of meeting a few people who do have Down Syndrome.

And my son has disabilities, and we were also told to terminate our beloved son.

Let me tell you a little bit of our story.

It was the day of my growth scan and I would have been around 30 weeks’ gestation, my parents took me as Tim had no holiday’s left to take.

We weren’t waiting too long before we had our turn, I was so excited to be seeing my boy again, and for my parents to meet him too. The sonographer squirted the jelly on my belly and began to scan.

All of a sudden, she went quiet.

My Dad started questioning her as to what she was looking at, then she dashed out of the room to find another member of staff.

It’s all a bit of a blur but I remember feeling very anxious by this point – I wanted to know what was wrong.

We were told to wait in the waiting area to be seen by a consultant who told us the fluid in his Ventricles were too large.

Fast forwarding on a little bit, we came back to the hospital with Tim a few days later to be seen by a specialist midwife who talked us through what they had found, the word termination popped up a few times, and the possibility of Zachariah having a chromosome defect was also mentioned.

We were given a few options, but in hindsight I don’t feel like we had much positive information, it was all negative and all led to them pushing a termination.

We were told he may not live a long life.

I had the Amniocentesis test which came back negative.

It was here I was really worried, I’ll be completely honest here and say that I found such comfort in the possibility of my son having Down Syndrome, that way I would know for sure what was happening, and that way I knew there was so much support and I would have the confidence that we could get through this!

This wasn’t the case, therefore, we went on for further scans and an MRI which gave us so much more information, but also invited the Doctors to mention the T-word once again.

It scares me so much the way that professionals handle these situations, the word termination isn’t a rare word, but yet a word that is shouted out left, right and centre.

It’s devastating how little chance some of these babies have because parents aren’t given a more positive approach, but instead are made to believe that they cannot give their baby the best life.

If parents were given all the information instead of the negatives and the statistics I believe we would have a more beautiful world with babies who were given a chance.

A, “choice”, should be made with all the facts.

Children with Down Syndrome are Children, they are beautiful, they have personalities and they go on to live adventurous lives just like everyone else.

They deserve to be viewed this way.

And this goes for the rest of our absolutely gorgeous and unique children.

The Doctors knew so little about my son when they spoke negatively about him, but his Mummy and Daddy knew that he would fight for his life.

God knew him and He would determine his future.

I know so many miracle babies who have proven that they deserve a life, no matter how short or long that may be, who have been true blessings to many.

I haven’t written this to upset anyone, it’s just my view.

I just believe that professionals need to be more positive, more fair and more delicate and supportive.

Every Life is worth fighting for.

Running On Empty

There really isn’t much you can say, no words will take away the pain and heartache of those left behind yet we all feel that we should say something.

Anything to bring comfort, support and love to our friends who are hurting so deeply.

But nothing seems right somehow.

Then there’s the personal heartache of seeing my beloved Dad slowly lost to the ravages of Alzheimer’s and vascular dementia. I didn’t think I could hate anything as deeply as I hate epilepsy but dementia has won that crown.

Seeing my courageous, strong Mum start to give in to her grief as we were given the news that he really won’t be coming home.

The man who has been by her side for over 40 years now needing 24/7 care that she simply cannot provide for him, no matter how much she wants to.

Again, nothing I can say makes it any better but at least I can physically be there for her and the rest of my family, Dad included.

Then I look up and see my gorgeous, amazing little boy.

I already knew he was bloomin’ fabulous but now we know the full extent of his brain malformation his progress is all the more remarkable.

This week his neuro will go to the multidisciplinary panel for the Children’s’ epilepsy surgery network to recommend that Sammy is put forward for a vagal nerve stimulator – in all honesty this is something we’ve fought hard for, for over three years, and tomorrow we should have an answer.

I keep having to remind myself that they are the experts, and that I just have to have faith that they will make the decision that is right for my boy.

I desperately want/need that answer to be yes, because it really is the best chance Sam has to gain some sort of control over the seizures.

Right now, I am trying hard not to put too much hope onto the what may be’s and just try to get through another day of uncertainty.

But after for long of battling for us to get to this point I feel slightly lost having to pass control over to others.

I want to keep busy, but my concentration is zilch.

So, for now, I’m going to settle for having a short walk to the post office, then I’ll deal with the afternoon as it comes.

The Secret Epidemic Affecting Special Needs Parents

It is so common for me to hear this.

It is the centre piece of every support group, the most common theme on online special needs parent forums, the single most heard words when I meet up with people.

For some of those parents, it is so bad that I encourage them to see a doctor for support.

In my years as a fellow special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about:

We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day.

What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path.

I know what it is like to look at my child and worry for his future.

I know what it is like to feel there is no hope.

I recognise that feeling of failure when you realise your child is just not developing as they should.

I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child is disabled or has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school every day, a child who won’t eat, or has no friends, or is being bullied for being different, or who cannot play in a park as the equipment is unsuitable for their needs how would you feel?

If your child was denied the support they need, or could not communicate, or is living in pain every day…

Would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with additional needs?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among special needs families is concerning, but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now!

Don’t ever be afraid to tell someone you a really struggling.

Don’t ever be afraid to ask for help.

Together we can support each other and help make a better future for us and our children.