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)

Superwoman: A dedication

‘Superwoman’ by the amazing Alicia Keys is the song I would like to use for today’s Wordsmith Wednesday.  Alicia Keys is one of the artists that I really admire for being able to write such beautiful songs and perform them with such emotion.  I particularly like this song because it reminds me of two things that are close to my heart.  The first is my beautiful, hardworking and doting wife.  She is truly a superwoman for what she does.  The second is the lovely ladies that I have met through SWAN UK.  These ladies who are mothers, grandmothers, aunts and sisters, have to go through so much and deal with so many things that a lot of people couldn’t even comprehend.

Superwoman is Fighting the Fight….

For all the mothers fighting
For better days to come

When you have a child with such profound difficulties as a SWAN (Syndromes Without A Name) child does you need to fight every single day for absolutely everything.  Because you have no diagnosis, nobody is willing to listen or help you straight away.  They want you to justify absolutely everything that you ask for, no matter what that is, and often you are looked down upon as trying to ‘scam’ the system.  This results in having to go to numerous different sources and collect information to pass on to get the help that other conditions often receive with no questions asked.  The ladies who care for SWAN children fight every single day because they have to first ensure their child is cared for and catered for in the correct way and then start to deal with the mountain of paperwork, telephone calls and letter writing that has to be done to get their child some help and recognition in the system.

When the going gets tough……

Even when I’m a mess
I still put on a vest
With an S on my chest

As you can imagine these ladies get exhausted physically, emotionally and mentally from having to deal with so much pressure from every direction but they can’t afford to stop for a rest to recuperate because something always needs to be done.  Instead they pick themselves up from the ground, dust themselves off and get right back to the slog of doing what needs to be done.  I have witnessed some of the ladies there being physically injured and badly needing recuperation time to recover, yet, they still put the effort in and deal with the complex difficulties that their children have.  There is no opportunity to shirk that responsibility as it is the single most important thing to them.

Superwoman SWANS together can fly so high…..

When I’m breaking down
And I can’t be found
And I start to get weak
Cause no one knows
Me underneath these clothes
But I can fly
We can fly, Oh

I have seen these ladies all, at one point or another, reach the very limit of their capability to cope with their situation and they need to talk things out or vent their frustrations and they do so on the SWAN UK Facebook group.  A wonderful thing then happens where each of them band together and lift the spirits of the ‘injured’ SWAN lady and offer their support, kind thoughts and well wishes until she feels ready to ‘fly’ once more on her own.  The fantastic thing is that these ladies are never alone, that goes for the SWAN families as well, because once they make themselves known they are just a click, call or text message away from a countrywide support group.  It is truly an amazing thing to witness and it often has me speechless with how affectionate and caring every one of them can be.

Superwoman saves the day….

Cause I am a Superwoman
Yes I am
Yes she is

These ladies truly deserve the title of ‘Superwoman’ and they should get the recognition and appreciation that they deserve.  Sadly they probably won’t get the attention, thanks and praise they deserve but that will not deter them, they will still ‘Put on that Vest with an S on the chest‘ and carry on regardless because they have to.  They are carers, admin workers, specialists in medical care, advocates, charity workers, event planners and fundraisers.  Most of all though they are truly amazing people who are made of the strongest of stuff and will not be broken.

Well there you go, that is my take on ‘Superwoman’ by the fantastic Alicia Keys.  I hope that you enjoyed it but I would also like to hear your tales of any ‘Superwomen’ that you may know who deal with a lot of things that they never complain about and most of us would shy away from.  Are you fortunate enough to know someone like that?  Do you know someone who deserves recognition for dealing with a tough situation?  Tell us all about it, give them some praise and recognition and let the world know how super they really are.

Until next time folks, Stay Safe and Keep Smiling!

Related articles

• Superwoman Syndrome! Do you suffer with it?! (crescenttherapyandassessment.wordpress.com)
• Rita Ora looks up to Beyonce as ‘superwoman’ for juggling career and motherhood (standard.co.uk)
• First Look: Alicia Keys Gets Sleek For “Girl On Fire” Album (Peep Her Fierce Style!) (styleblazer.com)
• “An Average Woman in a Superwoman World” Launches New Website (prweb.com)

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!

Decisions, Decisions, Decisions. How do you choose?

Hi again folks, This is Day 9 of the Ultimate Blog Challenge.

This week has been a really tough one for me as I have had to make some serious decisions about my life and the direction in which it is going.  Everything from my health, my blogging, my studies with the Open University and even what I do in my leisure time with my family has been on my mind in this past week. So if you folks don’t mind I would like to ask you all for your opinions and advice.

Sesame magazine (Photo credit: Wikipedia)

The first thing I have had to address is my studies with the Open University.  i was studying for a degree qualification in Psychology and over the past year I have juggled my health, caring for my daughter and my studies to try and get my assignments in on time.  I have just about managed it but with a considerable amount of stress which grew with each assignment that was due.  it got so bad that I almost had a meltdown with the last one causing me to suffer terrible insomnia for about 4 days where I didn’t get any sleep whatsoever.  This affected my health really badly both mentally and physically and my poor wife and kids took the brunt of my bad moods I am ashamed to say.  On top of all that my medications keep changing to get stronger and stronger each time which often means I have extreme difficulties in concentration, my memory is terrible and a very strange phenomenon of being unable to read and understand things.  Add on top of this the effects of constant pain being a distraction and you start to see why I was struggling so much with handing in my assignments.  I decided that I should speak to my GP about all of this and make my decision as to whether I could continue working towards my degree.  The result was my GP said that she didn’t know how I wasn’t comatose during the day with the amount of medication I am on and that it probably wasn’t going to improve for the foreseeable future.  This means I had no choice but to withdraw from my studies.  I am really gutted about it but I have to admit I do feel a little relieved that I won’t have the added pressure on me when things start up again in September.  I do have the option of looking at some counselling courses in the future which I would consider in place of the Psychology qualification as it is a lot more ‘hands on’ and is something I think I would be quite good at doing.

(Photo credit: ~C4Chaos)

Then I started to think about my blogging and writing.  I have been having an absolute blast writing this blog up to now and it has been therapeutic, opened up my world to supportive and caring people and caused me to take a look at what I want from life and where I am heading.  The support I have had from your comments and the support I have been shown through Facebook and Twitter has been astounding.  I have had so many nice comments, spoken to so many nice people and had so many different thoughts and ideas on what I would like to do next.  I have decided that I am going to self-host my blog so it will be changing web address in the very near future.  This will allow me more control over what can be done on the blog and hopefully will give me a bit more freedom to change the design and feel of the blog to fit what I want it to become.  I have also considered writing some other things such as some poetry, short stories or maybe even a weekly story in episodes for a different blog.  Are there any things you would like to see me write about either in this blog or for another blog on a different subject maybe?   I will consider any suggestion as I have not got any ideas for certain about what the next project will be.

(Photo credit: Wikipedia)

My health has took a bit of a battering over the past couple of months with my insomnia becoming increasingly worse, my pain getting steadily worse and my ability to move around being severely compromised.  I spoke to my GP about my insomnia and she is stumped about what to do about it as I already take combinations of Morphine Sulphate, Oramorph, Gabapentin, Diazepam, Paracetamol, Acupan and Feldene Gel for my pain and swelling.  I am currently taking the maximum dosage she can give me and she said it should technically have me knocked out during the day but I find I can’t sleep no matter what I try.  As the insomnia gets worse the physical symptoms associated with it (ulcers in the mouth, stomach cramps, headaches and fatigue) also worsen causing me to withdraw to my bed on some days with an inability to move from it.  This has taken its toll on me mentally as well as it can cause me to feel depressed, tired and that I am fighting an uphill battle in trying to deal with my pain and it’s control.

I also wanted to start trying to do some exercise in the form of swimming but with the constant tiredness and stomach pains it can make it difficult to commit to going regularly to swimming sessions at our local pool.  I did manage to find out that our local council is planning on disabled only swimming sessions which will hopefully mean that we can go as a family to enjoy some leisure time together as well.  I just hope that I can manage to get the pain under control enough to be able to go to some of these sessions as I think my weight loss would benefit from doing some regular exercise and I also don’t want to end up with too much muscle wastage due to inactivity.  Which actually brings me on to my next couple of points.

A person in a wheelchair icon (Photo credit: Wikipedia)

I have recently put in my renewal forms for my disability benefits and they have finally awarded me the care component as I need a lot of help from my wife with everyday tasks.  I have been trying to get them to change this for about 8 months now but they seemed unwilling to budge, but, as of October, they have awarded me the new rate.  This has been a good thing and a bad thing for me in a way.  In one respect I feel validated because there has finally been recognition of how much I actually suffer each day and that is a good thing but on the other hand it has also opened my eyes and made me realise that I am actually disabled.  Don’t get me wrong, I knew that I was having these difficulties but I guess in my own mind I tried to rationalise it as ‘something I just get on with’ without analysing it too much.  This change has made me re-evaluate things and realise that maybe I need a little more help than I have been comfortable asking for in the past and that is something it is going to take me a little while to come to terms with I think.  This also ties in with my next, and biggest, question that I would like some opinions on. On Sunday gone I participated in a sponsored walk to raise funds for the respite care unit that my daughter attends.  I say I participated, my wife and one of the ladies from the unit took turns in pushing me in my wheelchair while my daughter pushed her sister in her wheelchair.  It was really nice to get out as a family but it did highlight a few problems that have made me weigh up some options.  My daughter found it quite difficult after a while to push her sister because it caused her to get sore hands and shoulders while my weight and my wheelchair caused my wife to get tired quickly pushing me.  It was only then that I realised that this was one of the reasons why we don’t go out as a family very often as it is so difficult for us to organise places to go with two wheelchairs.  I can’t physically propel myself along in my wheelchair because the position I need to be in means it causes my back muscles to spasm and worsens the pain.  That is what made me consider getting a powered wheelchair scooter.  I have the option as I get a mobility allowance on my disability benefit which would pay for me to have the powered wheelchair but I do have some reservations about getting one.  The advantages would be that my family would get more time out together as my wife would be able to push my daughter in her wheelchair while I would be fine getting myself around.  It would also mean for short trips to the GP and the local shops would be made easier meaning I wouldn’t have to be taken in the car, saving on petrol and running costs.  We already have a wheelchair adapted vehicle so transporting a motorised wheelchair wouldn’t be a problem but I do have some reservations.  I have a thought in my head that I would just be seen as an overweight guy ‘too lazy’ to walk if I was to use a scooter type wheelchair and I would feel a bit self-conscious because of it.  I also would be scared that using a scooter would make me become too reliant on using it.  A phrase that sticks with me is one that my pain management clinician said is “Most of the time people who go into a wheelchair because of a back problem don’t come out of it”.  This had me thinking and I don’t know whether it is something I should accept is going to happen to me or if I will actually get better.  I have suffered now for a number of years with the pain and things have become progressively worse during that time, so do I accept that I am going to need to be in a wheelchair for the forseeable future and adapt to that as best as possible or do I resist and struggle on as I have been doing?

So these are the questions that I am faced with.  What subjects would you like to see me talk about in my blog?  Are there any other types of writing you think I should try out?  Should I get a motorised wheelchair to improve my family’s social life and ease the burden on my wife and daughter? Am I worrying too much about what other people will say about me if I do get the wheelchair? I am at a total loss as to what I should do so I am throwing it open to you, my new found friends of the world wide web……What would you do?

I thank you again everyone for the support you have shown me so far and I truly value each and every opinion that is offered to me,

So until next time, Stay safe folks!

Is education vital for key disability issues?

Hi again folks, this is day 8 of the Ultimate Blog Challenge

I thought about writing this post as a sort of follow up to the post I did earlier called Do you ever feel tired, I mean really tired?

A lot of the responses that I got were similar from most of the people in saying that they had suffered discrimination or abuse because of the fact that they had a disability.  It seems as if ‘hidden’ disabilities are the most difficult as people look at the sufferer and think they are ‘normal’ and shouldn’t have any preferential treatment.  This was confirmed to me earlier this week when a friend was telling me that they had suffered a stream of abuse from one woman because she had her daughter in a pushchair in a disabled spot on a bus and the bus driver had to refuse another wheelchair user from boarding the bus because there was no space.  The woman came up and challenged her and she explained that her daughter was disabled and she was then accused of lying.

The international symbol for accessibility (Photo credit: Wikipedia)

This shocked me and made me think about a similar situation we had encountered with my daughter when visiting Universal Studios in Florida a few years ago.  We had gone to see one of the side shows (something like Indiana Jones etc.) and my wife and daughters went down to the front seating while I agreed to sit at the top in a disabled space with my daughter in her specialist pushchair while she slept.  A member of the staff then came over to me, shoved his head under the sun shade cover on my daughter’s pushchair and proceeded to ask me ‘Is she sufficiently retarded enough to warrant you sitting in this space?’  I saw red, showed him our pass from guest services and explained that if he didn’t remove himself from my line of sight immediately he would be removing a shoe from his hindquarters.  I was infuriated and we made a complaint about him to the park managers but again it highlights a problem that seems to be worldwide.  We continued having this problem all over the place including when we parked in disabled bays, used public transport or tried to use disabled access entrances.  I feel guilty to say but I actually felt happy the day that she got her first wheelchair because as soon as she got it all of those comments practically stopped.  It is amazing that a wheelchair has such significance that people assume anyone in it is automatically ‘disabled’.  My wife could go out and buy a wheelchair tomorrow and wheel herself around in it but she wouldn’t be disabled so it isn’t really an accurate marker is it?

I know as a parent I don’t want to plaster a big sticker on my daughter that says she is disabled.  In fact she is quite ‘able’ to do a lot of things but it still doesn’t alter the fact that her developmental age is 2 years old while she is in the body of a 9 year old.  However, to a certain extent there is a need to identify that she needs more help than that of the average child of her age.  That still wouldn’t stop all of the comments from being made though and it is a sad indication of the way our society is progressing at the present moment in time.

Two versions of the same message come to mind and they are:

“A nation’s greatness is measured by how it treats its weakest members.” ~ Mahatma Ghandi

and one that our current government in the UK could do with listening to:

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. ” ~ Last Speech of Hubert H. Humphrey

In this country recently there has been a number of newspapers and a number of politicians who have used dubious language or have outright attacked disabled people when talking about the changes they are proposing with regards to benefits.  Some of the comments that have been published have caused outrage and rightly so, things like :

“My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.” ~ Rod Little in the Sunday Sun newspaper (full article is here)

and also this newspaper story shows the effect it is having:

Benefit cuts are fuelling abuse of disabled people, say charities ~Peter Walker in the Guardian newspaper (full article is here)

 So in this present climate in the UK it has been shown that through the use of dubious language or labelling disabled people as ‘scroungers’ who are scamming the benefit system, the people responsible are actually making life so much more difficult for those with a disability, never mind those of us with ‘hidden’ disabilities.  I personally would give every single penny I had claimed if they could take away the years of suffering I have had so far or I am likely to have in the future.  I ask you to bear in mind that these comments are being made by people who are now being found to ‘dodge’  paying tax into the system that provides for these people and also these cuts and decisions are being made by a government that wasn’t even elected by the people.    I also ask you to bear this in mind, this is the year when all of the world has it’s focus on the UK as the Olympics and the Paralympics are held in London.

IPC Logo (Official Website of the Paralympic Movement)

So with that in mind, the Olympic Games and the Paralympics are being held in our country.  A great honour and surely a showcase to the world at how good we are and how well we integrate disabilities into our society.  Well you would think so but when I was reading a blog from Fran Williamson, one of our great paralympic swimmers, and she mentioned that:

“Official documentation of the London 2012 Games Makers mission has categorised Cerebral Palsy as a learning disability.  Whilst it is true that, depending on the areas affected by brain damage, some people with CP do have learning impairments, it is not an major affect of CP for all who have it.”  – (you can read the blog post here) 

Now if the Games Makers Commission is not correctly informed when talking about disability and they are organising a Worldwide, World-famous competition for people with disabilities then what chance do any of us stand?  Well as I have said before I truly believe the answer lies in education.  If people are educated about different types of disability they might be better informed and feel less need to abuse something they simply don’t understand.  And that is why I decided to join a group that has been formed on Facebook who are looking to send a petition in to the UK government to include some form of teaching in the curriculum about disabilities and the effects of them on daily life.

The group called Campaign for disability awareness lessons has been set up because of the various levels of abuse that parents or children have suffered because of disability.  The group states:

 “It is vital to this campaign that parents family and friends of children with disabilities can stand together and work toward making a safer future for our most vulnerable. A future where they won’t be judged for their quirky movements and obsessive nature, people need to be educated to understand there is so much more to these children than what they see on the outside”

The group has been spread by word of mouth and within the first few days of being open is already at around 240 members and it is still growing.  It is something I strongly feel needs to be addressed as both myself,my wife,  my daughter and her older siblings have all been subjected to some kind of abuse about my daughter’s or my conditions.  It is the hope that with a little understanding about what can and can’t be done that things may just be able to change and everybody can be given the respect that they are due.

Thanks for listening folks, until next time, Stay Safe!