My world: an outpouring to those who will listen…

Hey folks, sorry I haven’t done my regular posts this week but I have been in a very dark place in the world lately and I am struggling  in many different ways.

The state of the world we live in….

My binge eating disorder has been testing me so much over the past month it has drained a lot of my energy trying to keep on top of it and I exhausted almost all of my coping strategies to try and stop heading down a very steep slope again.  I am winning the battle up to now but I really could use those positive thoughts from you if you can spare them.

Zanna and I have been working so hard trying to get things done for our charity work and things seem to be going well.  We have been organising a Halloween Party, Christmas Party, Christmas Fair, Pantomime Tickets, looking for donations for raffle prizes and organising a sponsored ghost hunt.  I have been doing a sponsored weight loss and over the past 2 months I have lost 17 lbs which (if all gets collected) has raised around £230.

We were at an award ceremony this evening for my 11…ooops 12 year old daughter, Manga.  She was awarded the Headmaster’s award from her Primary School for her contributions to the school.  We could not have been more proud of her as she works so hard in circumstances that most kids would struggle with.  She does so much for her little sister, Pretzel, without so much as a word of complaint and she truly astounds me with what she is capable of.  I know that she is going to be an astounding young lady and excel at whatever she puts her mind to.  It was her birthday today as well which made the evening even more special for us and for her.

The world’s plan conspires against us….

Unfortunately, whatever power that drives this Earth that we live on decided we had been a little too happy and a little too complacent and hit us with a sucker punch today.  We had the results of an MRI that was done on Pretzel in February and the results shocked us back to reality.  It showed that she has parts of her brain missing and other parts that are underdeveloped.  There is also some parts which are over-sized which all adds up to a big mess of everything.  The thing is we were never told about these things when she had her first one done when she was 8 months old.  To say it took the wind out of us is a little bit of an understatement.

The world our family lives in……

From the beginning of her life, Pretzel has been a bit of a conundrum for the medical profession.  This is nothing that a lot of my ‘family’ over at SWAN UK have not heard before as it seems to be a common theme among our children.  We just about managed to deal with the fact that she was resuscitated at birth after a traumatic labour for Zanna.  We just about coped with the fact that she was admitted 2 hours after being discharged from maternity with low blood sugars and low Oxygen in her blood.  We even just about managed to cope with the West Syndrome (Infantile Spasms) which is a rare form of seizure in children.  It took many months to get her seizures under control and at a level where she could function day-to-day but by God we got there.  We even managed to come to terms with the Grand Mal seizures she had that almost took her life on more than one occasion.

Pretzel has worked so hard along with us to try and overcome physical deformities, mental obstacles and so many other factors that no parent would want their child to go through.  Developmentally she is still at the 18 month old level in a 9 year old’s body but she can walk around the house on her own, she can play with the toys that she wants, she has a stubborn determination to do what she wants, when she wants and she can hum ‘twinkle, twinkle’ like a champion.  We are so proud of her for being able to do even that.  We always held an inner hope that at some point in the future she would be at a level where she may be able to do things for herself a little more but after today’s news that has been snatched away from us and it has been snatched away from her too.  I feel cheated……..not for me, for her.  She deserves so much more than what she has.  She has fought everything that this life has thrown at her and excelled through the worst of circumstances, but yet I feel saddened by the many things she will not get to experience.

She has been robbed of the chance to experience the joys of having a loving relationship either with us, her family, or with another person.  She will never have children of her own.  She won’t ever get to drive a car, go to work or have a social life that other teenagers enjoy. I think some parents take for granted that their child will walk, talk, grow and experience the world without a second thought that things could be so very different.  I know this because I was the same with my other two daughters but Pretzel changed all of that.  She has fought and struggled to do everything that she has achieved so far and it has taken hundreds of hours of therapy from Zanna, myself, Manga, Jaffa and the many teams of support staff that have known her.  All of that work has managed to get her to the very basic level that she is at today.

The world of a father in pain……

So here I sit, like a knife has been wedged into my heart, bleeding and in pain trying to cope with it the only way I now know how………writing it down to get a message across about what my family lives each day.  If I had the chance I would trade my existence for my daughter to have a life where she could experience the beauty of this world and some of the people in it.  I wouldn’t hesitate to trade places if I thought she would be able to achieve on a level that everyone else does because her determination and perseverance through some of the toughest situations means that she would do something really great.  I won’t get that chance though so we have to go on the only way we know how.  We pick ourselves up off the floor, slap on some sticky plasters and bandages and prepare to head back out into the blinding, swirling storm of uncertainty.  We live our lives day by day wondering what life will throw at us next.  Will it be good? Will it be bad? Will we get through it and tough out the rough times?  I don’t know what the answer is to that but I do know one thing……  We will go down fighting as one hell of a strong family that nothing could ever tear apart.

I ask of you one thing though folks, please, please don’t ever take anything in your life for granted.  Live your life being as happy and content as you possibly can be. Appreciate everything that is truly wonderful in the world and sped your life surrounded by those whom you love and who make you happy.

That is all I can deal with writing for now folks, sorry if it did put you on a downer but it had to come out of my head and my heart to give me the room to grow in strength and determination to carry on once more.

Until next time folks, Stay Safe and Keep Smiling!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• A Family Doctor’s Tale – BINGE EATING DISORDERS (kennethkee.info)
• My hidden illness: 30 things you may not know (keithaddison.co.uk)
• Binge eating: A disorder that affects men and women alike (wjla.com)
• Parents with a special needs child (braininjuryselfrehabilitation.com)

Without a Diagnosis – The Video Story

Without a Diagnosis – Video Documentary as part of Feel Good Friday

Hi folks, here we are at the end of the week once again and I wanted to share something that made me feel quite good this week which was the discovery that the documentary “Without a Diagnosis” that Kat Williams had been working on was ready to be shared with the world.  We have had a pretty rough time of it during these holidays with illness, stress and a million other little things that all add up to a bit of an unpleasant time of it.  We often feel like this, as do many other families of children without a diagnosis, but especially during the summer holidays as our children are taken out of their daily routine and plunged into a totally different one without any warning.  This is often the case when they go back to school as well because we have to get them back into a new routine once more.  This is why we all try and grab onto anything that gives us a little hope or makes us feel a little bit better during the holidays and Kat’s video documentary is one of those things.

Kat Williams is a student journalist who is studying an MA in Multimedia Broadcast at the University college of Falmouth and she has made this documentary about children in the UK who have a genetic condition without a diagnosis or a Syndrome Without A Name (SWAN).  I know I have spoken about SWAN UK before as I am a member because of my daughter Pretzel.  It is not very often that we get a spotlight shone on us in this kind of way so we all jump at the opportunity of promoting these things when we get the chance.  I have sat  watching through this video at least 4 times now and I have to say that I have never seen something that has so accurately caught the feelings, sentiments and the real situations that families like ours face each and every day.  It is a fantastic piece of work and I hope that it gets seen by as many people as humanly possible.  I will be sharing it everywhere that I can and that is where I would like you folks reading this to come in and help me as well.  First I would like to share with you the documentary “Without a Diagnosis”:

 

 

I hope that you may now have a little more understanding of the dilemmas and some of the problems that can face people without a diagnosis and I hope that you will feel like you would like to help families such as mine.  I hope I am not sounding too preachy or self-righteous with this post as it is a simple way of letting you folks know what families like mine go through on a day to day basis.  This is such a Feel good Friday feeling for me because it is just an extra step towards my family being understood and maybe having to fight a little bit less each time a project like this is done.

I would love for you to share this video with as many people as you possibly can and I would also ask that you please go and visit Kat’s blog and let her know what you thought of the documentary and how it has made you feel.  Please let her know how much this kind of support means to families like mine and at the same time get a message of hope, understanding and love out for all of those families who are struggling without a diagnosis across the world.

Thank you folks and until next time,

Stay safe and Keep Smiling!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• Equipment – Hot wheels! (swanuk.wordpress.com)
• A SWAN Song (swanuk.wordpress.com)
• ‘SWANderful’ to see SWAN in the papers (swanuk.wordpress.com)
• 9 things special needs parents don’t want to hear (keithaddison.co.uk)

Poem: Heaven's Very Special Child

Wordsmith Wednesday

Poem: Heaven’s Very Special Child –

A meeting was held quite far from Earth,

“It’s time again for another birth”,

Said the Angels to the Lord above,

“This special child will need much love”.

Her progress may seem very slow,

Accomplishments she may not show,

And she’ll require extra care,

From all the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away,

In many ways she won’t adapt,

And she’ll be known as handicapped.

So let’s be careful where she’s sent,

We want her life to be content,

Please, Lord, find the right parents who

Will do this special job for you.

They will not realise right away,

The leading role they’re asked to play,

But with this child sent from above,

Comes stronger faith and richer love.

And soon they’ll know the privilege given,

In caring from this gift from Heaven,

Their precious charge, so meek and mild,

Is heaven’s very special child.

Copyright © 1981 by Edna Massimilla

I chose this poem for Wordsmith Wednesday for my wife who told me about it.  It was given to her by a teacher at a nursery that our niece was attending at the time.  She had never met our daughter but had heard lots about her from my sister.  It is such a nice poem and the sentiment behind it shows just how special parents who deal with the extra strains and stresses of caring for a disabled child are.  I am not a believer in God and the Angels myself but the thought and feeling that goes behind the writing of the poem and also the fact that someone was able to associate it with my family makes it extra special.

I love to receive a poem that I may not have discovered and I love the fact that using the right words in the right place can evoke such strong emotions in the reader.  I think that people should read and send a poem to each other a lot more regularly than we do now.  There are some fantastic writers out there who do some stunning work but they don’t get the coverage and readers they deserve.  Maybe we should start making our own greetings cards and put in them a poem that we have written ourselves instead of relying on the awfully corny, cheesy and very short offerings that the greetings card companies seem to offer up to us.  The personality and individuality that a poem in a card would give would be much more appreciated by the receiver than the standard cards that are bought in the shops would give.

Have you been given a poem or piece of writing to help cheer you up or keep you motivated?  Would you share your own poem in a card for someone close to you? Would you participate in a poem swap if you had the chance to do it? Let me know what you think and if there is a poem or piece of writing you would like to share with the world and I will put them up here as part of my Wordsmith Wednesday series.

Thank you for reading and I would appreciate it if you could leave me a comment to let me know what you think about the poem and the series in general.

Until then folks, Stay Safe and Keep Smiling!

 

Related articles

• Wordsmith Wednesday (keithaddison.co.uk)
• All Mixed Up – A Motley Horde Of Funny Poems by Shane D. Williams (kid-lit-reviews.com)
• What is Poetry? (abjectbooks.wordpress.com)
• Postcard Poetry (teachingcollegeenglish.com)
• The Companionship Of Poetry (andrewsullivan.thedailybeast.com)

Life is definitely no smooth road

Life is definitely no smooth road – Motivational Monday

Life has no smooth road for any of us; and in the bracing atmosphere of a high aim the very roughness stimulates the climber to steadier steps, till the legend, over steep ways to the stars, fulfills itself.
W. C. Doane

I love this quote as it is one of those that I can always come back to when I feel life is getting on top of me and things are looking at their worst.  Last week was a particularly bad one for me and the family as we had quite a few setbacks which had us feeling pretty beat up and dejected by the time it came to the weekend.  We had all already been feeling pretty tired from the usual daily routine that we have and we were looking forward to the monthly respite break that we are entitled to through our local council services.  We planned on having a relaxing time doing pretty much nothing because we needed to gather up some well needed energy in order to prepare ourselves for the nightmare that is the final 2 weeks of the school summer holidays where there is no daycare provision for Pretzel.  We always try to prepare for this time in the holidays the same way each year because we know how distressing it is for Pretzel being thrown out of her regular daily routine of going to school for a very long 6 weeks.  She normally responds to this by getting very irritable and basically whinges and screeches from the moment she wakes up in the morning until the moment she goes to sleep at night.  That is why it is so important that we get some rest for the onslaught that is the final 2 weeks.

So we were all ready to send her off for respite on Friday for the weekend and we wouldn’t be picking her up until after her play scheme finished on Monday evening and we were looking forward to the resulting R&R when we got the ‘dreaded phone call’.  Now I need to take a little time to explain this to you and tell you what ‘The Dreaded Phone Call’ is.  This is when we have dared to make some kind of plan, no matter how small, to do something and then we get a call from wherever to say that we have to come and collect Pretzel.  Now through the years we have had ‘The Dreaded Phone Call’ from schools, play schemes, one to one workers and family.  It might seem like something you think we would expect and this is where our problem lies……you never expect it and you ALWAYS expect it.  It becomes really difficult to make a plan as we have to be prepared both physically and mentally to have the rug pulled from under us at any moment in time and for whatever reason.  Sometimes there may be a phone call, sometimes there may not be, but you can guarantee that when you least expect it to or when you least want it to happen that it will happen.  So on came this Friday when plans were to have our rest……

So exhausted today. It has been a rough week and now the chronic pain is kicking my backside 😦

Sometimes I wish I could reverse the last 8 years or so and look after myself a little bit better in the hope I wouldn’t be here in this pain today. I suppose it is always the case with hindsight.

I still have this anticipation though that something is waiting in the wings to kick me in the nuts again though as we are just about empty on our energy.  We were dying for respite to come around today only to find it looks like Pretzel might have sunstroke from being out with play scheme yesterday so we are hoping that she is o.k down there. The staff are fab though and we know they will be looking after her. They still might ask us to go and pick her up yet though which is a worry….

This was my Facebook status from Friday just after we had dropped Pretzel off at the short break care unit and yup, you guessed it, after just 2 hours we got ‘The Dreaded Phone Call’ and had to go and collect her to take her for an emergency doctor’s appointment as the staff had said they could not get her to wake up for something to eat and she was feeling very hot.  Lo and behold we found out that she had a water infection which had sent her temperature skyrocketing up to around 39.8 degrees.  This is always a danger sign for her because the last time that we had this type of infection it triggered seizure activity in her and we almost ended up losing her because the seizures wouldn’t stop even after emergency medications and she has had kidney reflux problems in the past which has left some scarring to her kidneys.  So, just as we were down at our lowest and most tired we had been robbed of the chance to recuperate and get ourselves prepared for the hectic couple of weeks we know are coming so very soon.  The worst thing about this type of problem with her is that it means one of us usually has to stay awake through the whole of the night while the other tries to get some rest to deal with her during the day times.  It is only through these types of shift style caring for her that we can manage to get through things.  I decided to stay up with her this time as my Insomnia is usually an advantage in this situation and it means Zanna can get some much needed sleep to deal with Pretzel and Manga during the day.

Fortunately we managed to get through the weekend without any seizure activity and Pretzel did manage to get off to play scheme today which was a much needed break for us but we are still having to try and brace ourselves for the last 2 weeks which will be the next fortnight only now we have the trip to hospital that will result from the water infection because of the history of kidney problems to look forward to as well.  I am sure it is going to be a struggle but somehow, in some way we will get there.

I appreciate that this post may seem to be on a bit of a downer but there is a point to me telling you all of this about this past week.  Even when myself and my family are going along the roughest of roads it seems there is something that gets us to pull together, no matter how tired, stressed, annoyed or upset we are and we get through to the other side to live another day.  Each time we hot a rough patch that I am sure would throw some families and other people to the ground, we manage to keep a steady footing and slowly, but surely, we get out the other side and we are much stronger for it as a result.  It seems that no matter what life throws at us we seem to dig deep, suck it up and tackle it together, as a family and it makes us stronger, richer and more thankful for everything that we are able to do and achieve every single day.

So what I would like to know from you on this Motivational Monday is this:  How do you cope with the things that life throws at you?  What keeps you motivated to struggle on when you think you can’t?  Do you have any quotes or inspirational stories that you read when you need that extra kick?

So until next time Stay Safe and Stay Smiling!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• Respite Care 🙂 and Med Changes = Happier Times! (caregiving.com)
• Is chronic pain in the brain? (blogs.abc.net.au)
• Elderly carers to be given respite holidays (ananursinguk.wordpress.com)
• Wales News: Families protest against withdrawal of nursing support (walesonline.co.uk)

SWAN UK children get Gold Medals for Olympic feats

Feel Good Friday – SWAN UK and the Gold Medal Winning Children

Hi again folks and welcome to the first posting of the Feel Good Friday series of posts planned for this blog.  The first post I decided had to be something that cheered me up and kept me motivated after having a pretty disastrous start to the week and SWAN UK managed to do just that.

For the first couple of days this week I was suffering from this flu-type bug that has been going around for the past couple of weeks.  This meant I was flat on my back in bed with cold sweats, couldn’t eat and I felt like the chest-burster from the Alien film was gnawing it’s way out from the inside.  I was about as much use as a chocolate watch in a heatwave!  Poor Zanna, was watching the kids on her own and she was not in tip-top condition either as she has been having recurring panic attacks for the past couple of months which means she has been taking medication to cope with them.  Pretzel added to the problem by deciding that she would have her worst sleepless nights herself at the start of the week which meant we were stressed, tired and fed up!

More of the week from hell….

Just when we thought we were over the worst of it we had an appointment with the local behavioural assessment team to try and deal with some of Pretzel’s various behaviours that we wanted to discourage.  She has become increasingly mischevious over the past few months and she has also started to get a lot more violent at home.  We have had punches, bites, scratches, nips, pokes in the eye, headbutts and, most recently kicks to the face.  We have become even more concerned as she could lash out at other children, visitors or strangers who happen to come into contact with her so we wanted to know if there were any strategies or coping techniques that we could use to discourage her or teach her that it wasn’t acceptable.  Unfortunately the result was that they can’t teach her very much or put any strategies into place as Pretzel has no concept of cause and effect yet.  She does not understand what is being said to her, she can’t talk back and she doesn’t have any concept of danger either.  This means we are often trying to cope with a 9 year old baby who is very quick and mobile to a certain degree and we often need to physically stop her from doing something or physically move her away from something dangerous.  As you can imagine this can get very tiring after a while and is a massive strain on Zanna as she has to do most of the physical stuff due to my own disability which arises from back problems.

Things start to pick up thanks to SWAN UK….

So as you can imagine we were pretty low by the time the latter part of the week came around.  I was actually dreading writing this post because I didn’t even know what I was going to write about, that was until my good old ‘family’ over at SWAN UK shared with me a fantastic video that they have combined to celebrate the accomplishments that our SWAN UK children have managed to achieve.  It is so good to see the children who are supported by SWAN UK doing so well so I thought I would share the video with you here:

(Video credit: courtesy of SWAN UK)

Why SWAN UK is so important….

The children that SWAN UK support have an undiagnosed genetic condition also known as Syndrome Without A Name (SWAN). Caring for these children is a tough and very tiring task because they need so much extra care and attention than other children. There is an upshot to being parents/carers for these children  as we get to experience ‘Gold medal’ moments each time they fight to learn something new or do something for the first time despite all of the challenges and difficulties that they have to overcome.  A lot of the time parents take for granted that their children will walk, talk, sit and grow without fully realising what the process is involved with learning all of these tasks.  With a SWAN carer it is different because our children don’t reach these milestones at the same time as other children and they may not ever reach them.  That is why we celebrate each and every little achievement they do make as they have fought and worked so hard to attain them.

Do you think that our children deserve their Gold Medals?  Do you know of any other children in a similar situation who deserve a Gold Medal? Would you lend your support to SWAN UK who support these families and their children in their struggle to cope with an undiagnosed condition?

Please leave me a comment and let me know if you have a child you think deserves a Gold Medal for overcoming adversity and how you celebrate their achievements.

Until Next Time, Stay Safe and Keep Smiling!

Related articles

• ‘SWANderful’ to see SWAN in the papers (swanuk.wordpress.com)
• Royal Mail defends decision to deny Paralympic gold medallists own stamps (guardian.co.uk)
• Paralympians ‘pleased’ with stamps (standard.co.uk)
• ParalympicsGB gave in too easily to Royal Mail (newstatesman.com)
• Baby suffering from Syndrome Without A Name (thesun.co.uk)

Getting Sentimental:10 things I miss, what are yours?

Getting Sentimental

I was getting sentimental today as it is my 13th Anniversary of being married to the wonderful woman that is my wife.  We have been together for 15 years in total which absolutely scares the pants off me.  It is only when certain things like these types of celebration come up that I realise just how much time is passing by.  My eldest daughter is 17 this year and starting 6th form, my middle daughter is 12 this year and starting secondary school and my little SWAN is 9 years old and growing to be rather huge to what I ever remember.

I think the biggest shock though is when I look at some of the ‘music’ on TV and I don’t recognise any of the songs or the pre-pubescent ‘singers’ who are gyrating around on the stage in virtually no clothing (if they are female) or talking about what they want to do to the half-naked girls on stage if they are male.  So I have to ask this question……

WHEN DID I GET OLD?

Me today in reality

I used to sit and think that my parents where old and stuffy when they would criticise my clothes or music and it is something I have found I am doing on an ever increasing basis recently.  Then it made me realise there are a lot of other things I miss from when I was younger so I thought I would share them with you:

1. Common decency and manners for all people – Why is it no one gives anyone else consideration these days?
2. Being able to run about playing football or rugby all day – Now I struggle to have the energy to get out of bed!
3. Home cooked food in cafés and restaurants – I remember being able to get things like mince and dumplings, home cooked pies etc.  Now it is all about speed and cost and I think quality has decreased as a consequence.
4. Sherbet Shandy Lollies – These were similar to Edinburgh rock on a stick and came in lemon or strawberry flavour – the company that made them went out of business.
5. Cheaper prices for….well everything – It seems that no matter where you go you are charged extortionately for everything.
6. Dirty Weekends with the Mrs – Definitely no chance of these with kids!!!!!!!
7. Clubbing in Rock clubs – When the Mayfair in the centre of Newcastle got levelled to make a cinema the rock scene pretty much died for me.
8. Drinking Alcohol….specifically Jack Daniels – I am a fanatic.  No really I collect all sorts of Jack Daniels memorabilia including bottles and because of the medication I can’t any more……I still have 2 bottles in my cupboard.
9. Florida – three of the best holidays of my life so far were to Florida and it was worth going as I got to go with my extended family including my grandmother  as well as my 3 kids.  We had so much fun and never wanted to leave.  It was like home.
10. My (step)mum Joyce – I hate calling her stepmum as she was a mother to me in every way except biologically.  She was my best friend and taught me an awful lot about morals, manners and how to be a better man.  I miss her talks with me about the world and setting it to rights and I really miss her ‘Joycey’ measures of alcohol which were, in her mind, just a single shot but in reality were more like a treble or quadruple!!!  Great when it was Jack Daniels though!

How I feel today LOL

 

So that is my little list of things I miss, what would be on your list of people/places/things you miss from being younger than you are today?

Thanks again for reading folks and hopefully normal service will be resumed once I finish celebrating with my wife.

Until then Stay safe and keep smiling!

Minimal Talk Monday

Hi again folks, this is day 16 of the Ultimate Blog Challenge

Mime Monday is because I feel like I have been hit by a train today.  I haven’t slept very well for ages now, my medications are playing havoc with my insides and my brain and it isn’t very nice so I thought I would share a few things with you via a different method instead!

These are some of my favourite family photos that give an insight into the fun and games that we have together.

Sorry this was a short one but hopefully tomorrow I will be back on track.

Until then stay safe and keep smiling!

Are You Normal or Are You Special?

Hi again folks, this is day 15 of the Ultimate Blog Challenge and we are about half way through!

I must admit to feeling a little bit down and a bit saddened this morning as I sat awake (….again) at 3am pondering the world and what it had in store for children such as my daughter.When I look at her I feel all of the joy and pride that a father should when he looks at his beautiful girl and that killer smile would melt the heart of anyone but (there always seems to be a but…) I can’t help but sometimes think about her future, how she sees the world and how the world sees her. There are some really nasty people in this world who would take advantage of someone with special needs intentionally and there are also those ignorant people who make disgustingly discriminatory comments who, in my humble opinion, lower than a snakes’ belly.
I want to protect her from all of the comments like that and I want to prevent her from hearing the way people can be so cutting just because something is ‘different’. What I would ask though is “What is ‘normal’? I don’t think that is a question that can be answered really because nothing is ‘normal’. Every individual has fingerprints that are unique, your DNA is unique, your personality and how you travel through life experiences and evaluate them is unique to you. If so much of us is unique then how can we define what is ‘normal’?

I have heard so many people in various situations refer to my daughter as ‘Not like a normal child’ or ‘She isn’t like everybody else’ and it has really started to get me thinking but also it gets me quite annoyed at the same time. When my first daughter was born (my wife’s second daughter), I was a brand new parent and I had never experienced anything like what was to come. There was the crying, rarely sleeping, pooping, peeing milk monster that took over our house and drove me almost insane with the amount of times I was up through the night. Then there was the inquisitive, destruction tornado, tantrum taking toddler that followed on before becoming the even more inquisitive, book reading, highly talkative, education hungry young girl who would ask me to write sums for her while sitting at the dining table every evening. Now I have the hormonal, stroppy, highly inquisitive, education hungry ‘tween’ who is just about to start secondary school. It all sounds pretty much the usual story so far doesn’t it? Now what if I told you that same daughter started speaking in full sentences before she was 2 years old, knew all of her colours, numbers , basic addition and basic subtraction by the age of 3, read story books before starting primary school at the age of 4? Would you then say that she was ‘normal’ or highly intelligent for her age? She has just had her school results back for this year and has achieved scores well above ‘average’ for her age level and for that I am pleased and proud but it does have me thinking ‘Why is it that she is seen as ‘normal’ but my daughter with special needs is not?’
How about if I told you that I was informed that my youngest daughter would never walk, talk, or feed herself and would live her life in a vegetative state in a wheelchair for the rest of her life? (I was actually told this as well) However, she has favourite TV programmes, walks (and runs) around the house and school, hums tunes and can understand single words at times despite her many difficulties. I would say that her development compared to what was expected is not ‘normal’ but instead actually ‘exceptional’. It is a matter of perspective as to what ‘normality’ is but it still doesn’t stop those thoughts creeping into my head……

Will my daughter ever have a relationship? Will she ever learn to speak? Will she ever be able to live with minimal assistance? Will she ever experience the joys of parties, birthdays, weddings or anniversaries? Will my wife and I be able to support her into our old age when normally we wouldn’t need to? What happens to her after we have gone?

All of these things seem like worries that affect most parents of special needs kids and every parent wants to try to do the best that they can for their child. Often it is the little things that can mean the most to us which, in it’s own little way, makes us even more fortunate and blessed than the ‘normal’ parents. I remember vividly the very first time my daughter sat unaided for the first time. She did it a lot later than other children do but she did it despite everything expected of her. I can remember vividly the first time she stood up on her feet, again a lot later than others, but SHE DID IT! She defied the odds and proved that no matter what happened she was going to prove us all wrong and fight to get where she wanted to be. Every step has been a struggle but I can assure you she has been determined to make each and every one. So the next time I say somebody refer to her as ‘Not like a ‘normal’ child’ or ‘Different to everyone else’ I will enthusiastically tell them that they are right she is not ‘normal’ but she is ‘EXCEPTIONAL’ and I hope that she, along with my other 2 girls, go through their lives being just as exceptional as they are right now.

My eldest daughter is leaving school this year and had her prom recently and it got me thinking about my SWAN daughter and whether she would have the same opportunity to have one. I had resigned myself to the fact that it was highly unlikely that the children in her class would have the chance of the same experience until I saw something on Youtube. I want to leave you with this video which just made my day and has inspired me to try and make the same happen for children in my daughter’s school and, who knows, maybe other schools in the area to pay attention and organise something similar.

This cheered me up and made me realise that there are some genuinely nice people in the world and there is hope yet for children like my daughter to be recognised not for ‘special needs’ but for being just plain old ‘SPECIAL’!

 

Until Next time Folks, Stay Safe and keep smiling!

How do you get back to yourself?

Hello once again folks, Day 14 of the Ultimate Blog Challenge.

Wow 2 weeks in and I have managed to find some fantastic people on this world wide web, post every single day to my blog, buy a website domain/hosting, learn more about WordPress plugins and stay sane through all of it!

I found myself talking to some wonderful people over at the Bloggers Unite tribe I am a member of on WANATribe about starting to write some other material that is not necessarily about special need parenting and subjects similar to that like I do with this blog.  Don’t get me wrong I LOVE this blog and all of the readers that I have and it has helped me grow so much in the past month or so that I have been writing it.  I just feel that as I am enjoying writing so much that I should branch out into some other things that I am really passionate about as well.   But then I realised……..what am I actually passionate about any more? I know that sounds a little strange but because every day is so tied up in managing my own pain and caring for my disabled daughter that I have forgotten what makes me…..well…..ME.  I used to have so many things I was passionate about and I used to be involved in so many things in so many different areas but it all stopped either when my daughter was born or I got really bad with the pain.
I guess this is part of the journey I am on and part of the reason this blog has been helping me.  I am slowly but surely realising my own worth as a human being and an individual.  After suffering so much abuse and self-hating about my weight, depression and coping with the binge eating I have piece by piece lost the parts of myself that made me have an identity and feel I had something to give to the world around me.

There are a few things and people who have slowly helped me start to realise this and it is because of them that I feel I need to take a big leap back into my own identity and start being a little selfish and start doing things for me and the man I want to be (there will be a big shout out at the end of this post I warn you).  I don’t want to get up in the morning any more and look in the mirror at this stranger’s face that looks like me but isn’t a true representation of the real me.  I don’t know if this is just something that has happened to me alone or not but I can’t help but think that there are some other people out there who must look in the mirror and see somebody different staring back.

Where did my dreams and aspirations go?  Where did my motivation go? Where did my passion for life go?  Why have I been so content to let life pass me by instead of jumping in and experiencing life? Why have I passed up on opportunities because I didn’t have the confidence to step up to the plate and realise my worth, opinion and experiences are valuable? 

These are all questions I am now asking myself because I don’t want my life to reach it’s later stages and be full of regrets, wishes unfulfilled and feeling like I hadn’t participated in life in general after all it isn’t a dress rehearsal!  I am going to make a change in my life from today, this is it:

I promise to be myself, I promise to start recognising my self-worth, I promise to reignite my passion, I promise to start living life instead of letting it pass me by and I promise to be a happier, confident, meaningful part of the world around me and give back to those who need it.  I promise this in front of all of you people who are reading this and those of you who think about me even for a flashing moment during your day.

I used to be so involved in amateur dramatics, I used to play in a band, I used to sing ALL of the time, I used to listen to music ALL day,  I used to wood carve a lot, I love watching movies, I love poetry and reading, I loved playing computer games, I loved watching NFL and Rugby,  I loved talking to people and sharing stories/jokes and I used to love cooking A LOT (more than I did eating it!).
All of these things I used to love doing but I have also found out a few things that I have started doing that I really enjoy doing now such as fundraising for charity, writing my blog/stories/poetry (anything really!)  and learning about all sorts of things (I seem to like to learn about virtually anything as well).
Then there are a few things I would love to do but have never had the confidence, or I have lost the confidence, to do such as learning to dance, putting my singing out into the world for people to hear, writing things to put out into the world for people to read,  building my own reviewing website/blog to give honest reviews on different products and cooking a meal for people again.

Looking at these things there are lots of ways for me to start looking at finding myself again but I would love to have as many of those who have helped me along the way on board with my journey so I plan to write about them as I go.  Is this something you folks would be interested in reading as well or is it something I should write about in a different place?  How would you go about finding yourself again?  Do you think you would approach it in the same way as I plan to do?

And finally to the shout out part (I don’t mind if you skip this) as I really would like to thank:

My wife, daughters and family for being there when I really needed their strength and support;
All of the folks at SWAN UK who make the journey with a daughter who has an undiagnosed genetic condition so much easier to bear;
Karen, Dan, Andrew, Tina, Faith, and Duane for being excellent friends and listening to the gripes and groans and generally being awesome mates through the bad times and the good;
@Sarahmckenzie80 for making me laugh so many morning on Twitter when I have felt like I have been hit with a steamroller,
@HumanInRecovery and @Athenabrady for your kind thoughts, support and general sweet natures that have helped build me up;
All of the folks at WANATribe who have supported me and offered me help in building my confidence as a writer and blogger;
All of the folks participating in the Ultimate Blog Challenge who have helped my readers grow and offered such insightful blogs to read;
To anyone else I forgotten to mention, if you think you should have been on this list you are probably right and every little thing you have done contributes in some way to my life and for that I am truly thankful;
Finally A BIG HUGE THANK YOU to all of you readers who have contributed to my first steps to becoming my own person again, you will never know how much the comments, support and thoughts have helped me realise I need to begin a new journey and I hope you will continue to support me along the way.

Until my next post stay safe and keep smiling!

9 things that siblings of special needs children may think or feel

Hi again folks, this is day 12 of the Ultimate Blog Challenge.

Hi folks,  hope you are enjoying the new web home of Sleepless in Newcastle and you are happy with the way everything looks.  If you do think something could do with a change then let me know!

Anyway on to our topic for today:

9 things that siblings of special needs children may think or feel about their situation:

Sibling LoveErnst Vikne / Foter

 

1. Their own good health makes them feel guilty or ‘lucky’
2. Afraid to talk to parents about fears in case they make them stressed or ‘hassled’
3. Worried about what the future holds for their sibling
4. They need to help with everything / nothing just to get your attention
5. They can’t ask for things or ‘burden’ their parents with anything
6. Lonely, neglected or jealous about the extra attention that parents may give their special needs sibling
7. Embarrassment to have friends over to stay/play because of their special needs sibling
8. Wish that they had problems as well to get more of your attention
9. Worry that they may ‘catch’ what their sibling has got

 

Family fun timesCamp ASCCA / Foter

 

I know that through various stages we have been through pretty much all of these stages and it is extremely difficult to deal with on top of everything else that you have to do as a parent of a child with special needs.  We have to remember though that our other children deserve just as much encouragement and effort as our special needs child.  It is a tough time whenever any one of these points rears it’s ugly head but the strength of special needs families is often enough to overcome anything that life throws at us.  So in keeping with that list here are some of the ways in which we have found to solve the problems:

1. Work through an explain to the sibling what the problems are with their sibling in an age appropriate manner.
2. Remember to listen as well as to talk about things.  Quite often we, as special parents, spend too much time talking and yelling at clinicians / service providers that we forget to hear what our children are saying.
3. Assure your child that everything they do for their special sibling means that they have the best possible love and the best possible future they could hope for.
4. Explain that as a family you have overcome so many difficulties already that nothing life throws at you will change the love and care that you give each other
5. As parents, remember that special time set aside for a sibling can be something as simple as getting them involved with cooking in the kitchen or a trip to the local shop as long as your attention is focussed solely upon them.
6. Introduce friends of your sibling to your special needs child at an early age and encourage them to come over as often as possible, that way they become accustomed to the situation and will not be fussed by anything.  Also remember it is never too late to start this as a friend worth having will be understanding and supportive.
7. If your area has access, a young carer group can offer a place of understanding and fun activities that can be a distraction and social outlet for some of the worries affecting the sibling.
8. Write your sibling a note, letter or take a funny photograph to slip in their bag,pocket or lunchbox to let them know that you are thinking about them.

It is vitally important to remember that the siblings of a special needs child are going to be the person that is going to be around long after you, as a parent, are gone.  They need to feel confident that they can care for their brother or sister in the same way that you have done as parents after you no longer can.

Ultimately the more support you offer each other as a family the better off you and your children’s futures will be.

So the question I ask is what problems have you encountered with siblings and how have you dealt with them?

Until next time, stay safe folks!