Big birthday coming up

By: | Published: 10th October 2017

In a few weeks Harry will be 16. What a wonderful young man he has grown into.  We are so proud of all he has achieved through his hard work and determination.  He will be doing GCSE exams next year, and is planning to go to college. He plays football for a CP team, and goes to the gym each week.

It has been a very long and hard road to travel at times with many tears and smiles, anger and joy, frustration and enlightenment. He has had lots of people in his life, from family and friends to health professionals helping him along the way, to who we are grateful to.  Well done our beautiful, caring young man.  We love you.X

The World has Stopped..

By: | Published: 21st August 2012

    

The Registrar was trying to explain to us about a baby we had not yet seen, not yet named held, not yet named.

The amount of time without oxygen, had caused damage to his brain.  Ok so when can I see him? We are not sure how much damage has been caused to his brain. Ok so when can I see him?

Why when I was hearing all this talk of brain damage was my own brain not registering anything? Why could I not take in this important information, process it and come out the other end with ‘your baby has brain damage?’ Why did the World stop for a few moments and then start again with bits of us missing.  That is what it felt like when you suddenly realise that the child you have just given birth to has been hurt beyond repair!

When you are told that your child has a disability that is going to effect them for the rest of their lives, how do you accept it? How do you take on board all that is being told to you and all that is not?

I feel that doctors can give so little information about the future, what will his life be like? will he go to school? will he walk? will he talk? Unfortunately when your child has CP it seems to be a matter of wait and see.  And so you do, you wait and do all the things you need to do, physio, speech and language excercises etc., you put him in leg splints, body splints, even when he tells you he hates you for doing this to him, because at the end of the day you want him to achieve ‘his’ full potential.  So you do it when you are tired, when you just want to scream ‘why us?’  ‘why him?’ you do it because you love him and he loves you.

The World does start again!

A routine is set up and you start to accept things you can’t change, help and advice comes from unexpected places and people, your little man or lady starts to grow up and develop their own personality. So while you do ‘wait and see’ what will be, you start to take joy in all the small steps he makes.  His first attempt at communication, his first giggle, his show of independence, being able to sit up, being told he does not need to use his Kaye Walker anymore.  They have all brought tears of joy, because they are all such small things expected and accepted by so many others, but they are HUGE, MASSIVE things for our little people. Enjoy every little achievement!

Face 2 Face with Scope

By: | Published: 4th November 2011

Scope’s Face 2 Face service offers parents of disabled children one-to-one support from trained volunteer befrienders, who are themselves parents of disabled children. Befrienders offer support, practical advice and reassurance. Many parents find it invaluable to have another parent who can simply listen and understand.

Face 2 Face groups operate in several locations across England and Wales, but there are many areas that don’t have a group. We would like more people to be able to use the service and that’s why we are doing this survey. We want to gather information from people to find out whether they would like to have a Face 2 Face group in their area.

This survey will only take a few minutes (there are 7 short questions) and will help us ensure that we are setting up services where people want and need them. We would really appreciate your input.

http://www.surveymonkey.com/s/75YBXTS

Children will ask Questions

By: | Published: 15th June 2011

Harry came to us a while ago with an idea.  He was being asked questions at school (mainstream) about himself.  He has attended this schol since age 3 and has grown up with many of his classmates, but as both he and they have developed so has their curiosity.

However, he sometimes found it hard and or upsetting to explain how things are for him and how he came to have the challanges in life he has.

His idea was simple. Cards. Cards he could give out to people to explain in simple terms about his Cerebral Palsy and his Epilepsy.

So the task began. What questions was he asked? How should we anser them? and from weeks of hard work from Harry a little imput from me and a Daddy who is a graphic designer Harry’s cards were created.

They are business card side and at present are a set of 8, they have a photograph and a question on one side and an answer on the other, each set is kept in a little plastic business card holder.

harrys card 1Harrys card 2

‘Hello Epilepsy’

By: | Published: 1st March 2011

When Harry was first born the consultant at the time said that he was having frequent seizures.  To our untrained eye, we could not understand this as apart from all the machines and tubes attached to him and that he was in an incubator in a neonatal unit Harry appeared fine.  However the sign were small ones, eye movements, coordinated movements were not what you see in a new born baby.

Harry was started on daily doses of phenobarbatone, a medication used in the treatment of Epilepsy.After we left hospital, Harry continued to be given his medication for several weeks until at a routine neonatal appointment it was decided that as he had shown no more signs of any seizures we would wean him off the phenobarbatone and see how we got on.  We continued to be asked at each appointment any signs of seizures? No was our reply.

February 1st 2008, we woke to a winter wonderland, it was snowing.  The children were doubly exited now as we were due to travel to Centre Parcs in Cumbria with Nan and Granddad for a long weekend.  Our normal route across the country would have been by the A66, but we were advised on route that it had been closed, due to snow.  What should we do? It was decided to go the long way round, so what would have been a journey of a couple of hours took considerably longer.  Eventually we arrived safe and sound at our destination with two very exited children, checked into our lodge and eventually sat down to dinner.

The children were in bed and we were chatting downstairs and just getting ready to turn in ourselves, when we heard Harry coughing? NO! shouted David as he took the stairs two, three at a time, ‘he’s choking’!

Harry was making the most awful sound as we entered the bedroom, he was choking, David grabbed him and tried to wake him up, he continued to make the awful gurgling noise, then we spotted the strange movements his face, his arms his legs were all ‘flicking’ at the same time, ‘He’s having a fit’ quick phone an ambulance. 

Ambulance is on it’s way, but due to the snow it will take a while.  Charlotte who was sharing a room with her brother was taken by Nan to another bedroom, I was upstairs with Harry, David was downstairs talking to the emergency services who kept us on the line and asked us questions to pass onto the ambulance.  It’s ok lay him down, try to keep him on his side, is he still moving? Is he still breathing? WHAT?

The ambulance is going to take a while, but this had been going on for ages, the eyes rolling about his head, does he know what’s happening? Can he feel this? Is he too very afraid? 

The ambulance is nearly there, tell them his legs have stopped, his arms are stopping, I thinks it’s stopping. His lips are blue, He stops breathing, I scream this information at David, who passes it on.  What do I do? Flip him onto his back, pinch his nose and take a breathe, cover his mouth with mine and blow, again, again, Come on Harry, David is telling me the ambulance is in the park its minutes away, Harry gasps his own breath, and another one, his lips are going pink again, lay him on his side. Ambulance is here.

We are taken to Carlisle hospital where he was given oxygen, had bloods taken to check for an infection and we spent the night with a little boy seemed to sleep peacefully.  The next morning he woke, we asked him if he knew where he was. ‘Center Parcs’, no we said Hospital. He had no recollection of the previous nights adventure.

And so began our introduction to Epilepsy.  It was only an overnight stay in hospital, and was followed up by visits to his own consultant, medication, EEG’s and many sleepless nights.  From that night on and for many, many nights after David and I took it in turns to sleep in the same room as Harry, nights out ‘together’ were put on hold, one of us had to be with him, that was how we felt. We still to this day continue to have a monitor in his bedroom, and wake to the slightest noise.  We have had other visits to the hospital, for his big seizures and keep a log of any small ones; he continues to take his medication twice a day.

Epilepsy is a tendency to have seizures caused by a sudden burst of electrical activity in the brain, causing a temporary disruption.  For more information you could visit www.epiplepsyresearch.org.uk

For the Love of Mia

By: | Published: 16th April 2010

When your child can not or has trouble letting you know what he or she wants or is feeling, what do you do? For Mia’s daddy the answer came to him one night in a hotel room…

At 2.24am on Christmas eve 2004 my life changed forever when my gorgeous daughter Mia was born. But not in the way I had planned. Deprived of oxygen at birth, her first few hours of life were very hectic as doctors and nurses fought to save her life. My wife had to have an emergency episiotomy and Mia was blue when born and whisked away amongst alarms, frantic doctors and a huge number of people that came out of nowhere. My wife’s bleeding was so bad, she spent her Christmas day receiving three blood transfusions and I needed to stay with her. It was to be four long hours before she and Mia had stabilized and I was allowed to up to the special care unit to see Mia.

I have always had a thick skin and an ability to cope with difficult situations by detaching from them, but when I saw my beautiful daughter wired up to countless machines with tubes and wires everywhere I felt pain like I have never felt before and promptly collapsed. My legs just lost their strength and I wept uncontrollably. How could I go back to my wife and tell her what I had seen, I thought? It was immediately clear that Mia’s brain had been irreparably damaged and her eventual diagnosis was of cerebral palsy or CP. Mia was to be completely physically disabled for life.

As each child with cp is different, we could only get broad advice from health professionals as to what to expect. As time wore on it became clear that the NHS wasn’t going to be able to dedicate the resources Mia needed. In the first year just keeping her alive was a struggle as she had major trouble with coordinating breathing, swallowing and eating. Her eating problems were so severe she was surgically fitted with a tube direct to her tummy for fluids to go straight in, bypassing her mouth as her oral coordination was so badly damaged. Her inability to accurately control her mouth and swallow reflexes also severely impacted her communication, which meant speech was going to be almost impossible we were told. We were devastated. None of the imaginings we had for our first child involved the level of illness she had, the trips to the hospitals, the operations and the sheer grief of it all. For Mia’s sake though we soldiered on, still determined to do our best for her.

The alternative communication solutions we were offered were impersonal, bulky and expensive. I thought there had to be a better way of helping Mia communicate with us. As she grew it seemed that although physically disabled, she was cognitively alert and aware. I worried that without a workable system of communication she could access easily, her ability to learn at a crucial age would be compromised.

Around the same time I got an iphone for work so I could pick e mails up when I was traveling. One night in a hotel with some time on my hands, I started looking at the Apple’s app store with the Apple slogan “apps for everything” ringing in my ears. But where was the app for Mia I thought? I couldn’t find one, but was sure I could design one that would allow Mia to communicate more with us.

Not being the most technically gifted person, I engaged a software company to build a communications app that was fully formed in my head and dealt with the communication issues I had faced. I wanted a system I could add photographs of people and objects Mia would recognize, rather than the obscure artwork other systems offered. I wanted to be able to add my voice to the app rather than some frightening mechanical voice and I wanted to have flexibility to change and edit content easily.

The result is the iComm, the app I have now launched for the iphone and new ipad. Feedback from parents with disabled children has been fantastic as they, like me, were completely frustrated with finding ways of helping their children communicate.

Then came another realization. In creating an app for my disabled child, I realized I had also created a communication device for another audience, able bodied toddlers who have not yet developed speech but have a burning desire and need to communicate. All parents of toddlers have played the guessing game when their child is expressing its frustration at being unable to communicate accurately what it wants, whilst using the one communication tool it has got, crying – loudly! Parents with able bodied children have been equally impressed with the iComm.

Doing something productive has helped immensely with the grief and pain of Mia’s diagnosis. However despite all she has been through, she is a very happy child whose laugh is infectious and inspires me to move on – whatever pain I feel around her condition. If she can be so happy at times, I feel I have a duty to deal with my own grief better. Doing something positive that other disabled children can benefit from also, has played its part in my lifelong goal of living life positively again.

The iComm is available for download from Apples app store for use on the iphone and new ipad. There is a free version and to get the full version you can pay an upgrade fee of £15.99 to get access to all twenty categories. This also gives the ability to record your own voice files to go along with your own pictures, to help a child without speech communicate.

Mia

Go to www.miasapps.com to find out more and see a video demonstration of the app or download it today from the app store on your iPhone.

Birthday coming up

By: | Published: 10th November 2009

Our little boy will be 8 in a couple of weeks time.  He has brought to this world a huge amount of sunshine and happiness, but I would not be honest if I did not say that there has also been a lot of tears as well.  I know that on the eve of his birthday I will find it hard to sleep, I will remember in great detail the night before I went into labour, my thoughts and feelings at that time.  I know that I will cry after I have dropped him off at school, he will go into class, I will return to the car and I will cry.  It will be just after 9am, the time he was born.  I know this will happen, because it has happened every birthday he has ever had.  I will spend time thinking, rememebring, wondering if there was something I should have done or could have done differently. I know it will not change things and maybe I am being a little self pitying and a little self indulgent, but I will do it anyway.

 

The World has Stopped.

The Registrar was trying to explain to us about a baby we had not yet seen, not yet held, not yet named.

The amount of time without oxygen, had caused damage to his brain.  Ok so when can I see him?

We are not sure how much damage has been caused to his brain. Ok so when can I see him?

Why when I was hearing all this talk of brain damage was my own brain not registering anything? Why could I not take in this important information, process it and come out the other end with ‘your baby has brain damage?’ Why did the World stop for a few moments and then start again with bits of us missing.  That is what it felt like when you suddenly realise that the child you have just given birth to has been hurt beyond repair!

My Son a poem by Mags Hall

By: | Published: 17th October 2009

When Mags son Zach was born it was a taumatic time for all concerned, and something that many of us can relate to.  Mags has been able to do what so many of us can not and that is to put down in words, the experience of the start of Zach life

This is it:

  1. You lie there. Unaware of the panic that now surrounds you.
    Your head bobs with each compression. Yet still you lie there.
    You make no noise, while inside I am screaming.
    You have not yet been introduced, yet Daddy’s heart hurts with love.
    I turn to him now, and wait…
    The silence is unbearable. I wait…
    A single tear runs slowly down his face. Yet still, I wait.
    I cling to hope and faith and pray that soon the silence will stop.
    You are fighting so hard, I can feel it.
    You already bare the scars of a courageous war.
    You are beautiful, perfect.
    Don’t give up now.
    Brave warriors join you in your battle.
    They heard your silent calls for help.
    They take you from this fear filled room
    And surround you with warmth and your first glimmer of life.
    Comforted by the machines that now support you,
    We adapt to our new role as spectators of your fragile beginnings.
    The rise and fall of your chest is addictive to watch
    Not daring to look away, for fear it might stop.
    Your leg starts to shake. My heart misses a beat.
    You shake all over now, and an alarm sounds.
    Once again your silence is heard
    And the brave warriors return with unquestionable vigilance.
    They fill your precious body with healing liquid
    And you return to your silent post.
    Days go by and slowly but surely your enemy shows signs of defeat
    The rise and fall of your chest is fighting against the machines
    And you inhale your first scent of life.
    We are full of emotion as our skins touch for the first time
    We cry and imprint this memory in our souls
    We stare at this work of art, taking note of every line
    Not wanting to forget a single moment.
    There is cryptic talk of damage to your brain
    I am sure that this must be wrong
    It feels unreal and we look at you lying there so innocent
    How can this angel be so perfect and have so much that is wrong.
    The tears fill our eyes as your life is unveiled
    And we hurt deep inside for the loss of a boy we once dreamt of
    But here is this child so handsome and strong
    Our purpose is clear, no more questions need asking
    He is perfect, he is needed and loved, and most importantly
    He’s my son.

Have Wheels Will Travel

By: | Published: 1st September 2009

Harry and frameThe lady in front of us turned round with a very cross look on her face. Who could blame her? She had just been rammed in the ankles with a set of wheels. However instead of finding the expected pushchair she looked down at the beaming face of a 2 year old in a Kaye Walker. Harry was on his first outing on his own two legs, and was having great fun. She appeared a little lost for words, so simply smiled and carried on walking.

It had taken a long time to persuade Harry to actually use the ‘frame’, as it came to be known. He had refused to even stand in it at first, it was placed amongst familiar toys, children of friends ‘played’ with it, still no interest, until one day I had taken something into the kitchen, when I suddenly heard his mammy word, I turned to go back and nearly knocked him over, there he was him in his frame, smiling up at me, from then on there was no turning back!

Apart from the plaster being knocked off the corners of walls and wood chipped off door frames, the dog being ran over several times as she tried to get a little snooze in, a lot of bruised ankles and toes, he could manage it fine.

There was the unfortunate episode in the store with the large glass display, but the assistant was most understanding.

So he was ‘free’ and did he take advantage of his new found freedom, did he ever. In the garden, shopping, on the wet sand of the beach, in the park, he tried everywhere. When he started nursery, so did the frame, sports day no problem, just give a little space. The smile on his face continued to shine; He soon became more of an experienced driver and accidents fewer. The frames grew with him; it came on holidays abroad with us, and earned several stickers.

In The Beginning

By: | Published: 27th August 2009

They had taken him away as soon as he was born; I had not even seen him. Something had gone wrong…

Our little boy was born after an uneventful pregnancy on exactly the date we had been told, my waters broke in the early hours, and the contractions were bearable, just. By the time we got to hospital things were well under way.

I remember the two midwifes saying ok now push and chatting about things, as you do, giving me gas and air, and an overwhelming sense of excitement, we had waited for this baby for a long, long time, and had gone through so many things to get this far. David’s face was a picture, not known for his braveness at the sight of blood he was dealing with all this really well.

Suddenly a lot more people were in the room, David’s face was not so good, a woman looked in my face, “I’m sorry I don’t have time to numb you, we need to get your baby out”. The cut the pulling, the instructions to push, and again, more people in the room, David with his now grey face collapsing against the bed. People telling us our baby boy was not breathing, they were trying to get him to breath, don’t worry it will be alright. People rushing, doors opening, baby taken away. It was not alright, it would never be alright ever again.