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)

New ideas and a fresh outlook….

Hey folks, I am back with a new outlook for the week, the year and for my whole life!  In fact this post is going to be the first of many that I will be linking up with another blogger called Melissa over at The Bright Side blog.  She hosts a series called LML (Love my Life) on a Monday and you can read about it here.

First I want to say sorry for the lack of posts last week but things have been absolutely manic for us with the kids being on their school holidays.  Pretzel decided she would scream at us all day, every day because she has been taken out of her routine, Manga has been getting bored because she has had nothing to do and my sleeping and pain have been giving me a right battering as well.  All of this together does not add up to a happy, energetic Keith!

 Time for a new beginning

Life isn’t about finding yourself. Life is about creating yourself. -George Bernard Shaw

 This quote from George Bernard Shaw is one that I will look to for inspiration in the future when I am feeling stuck in a rut or when I need to try something new in order to change the direction in which my life is heading.  Too many times in my life I have talked about finding out who I am and what I want and I have even written about it on this blog.  Then I was reading a book that I bought recently that had this quote in it and it made me rethink the strategy I was using to try and change my life for the better.  Instead of looking backwards at the things that I used to dream about and where I wanted to be when I was younger, I have decided to take a different standpoint now and create a ‘new’ me.

You will never win if you never begin. -Helen Rowland

There isn’t just a new beginning for me at this moment in time though, my whole family is starting new things this month.  Pretzel will be getting a new one-to-one worker who will be taking her out on small trips during the week to give us a little bit more free time to do things for ourselves.  This is something we have been looking forward to for a while now because it means we can spend a little more time and attention on Manga and also gives us a chance to spend a little time with each other.  We may even get chance to have a regular ‘date night’!

Manga is starting secondary school in the next couple of days as well which she is so excited about.  She absolutely loves school and hates the fact that she has to have school holidays, especially when they are as long as this one in the summer.  We are so proud of her because she got her results back from her SAT tests and she aced all of them, even getting a grade for Maths so high that they don’t normally hand it out! A new school for her is an exciting prospect, but I have to admit it is a double edged sword for me because my little girl is growing up and it is hard to ‘let go’ of my little girl and embrace the young woman who is now in my life.  I think it is especially as the difference between her development and Pretzel’s development is so markedly different.  It is hard not to compare each of my daughters with each other but it is something I am going to have to learn to adjust and adapt to.

Jaffa is starting 6th form college in a couple of weeks to study Information Technology, Child Development and Health Studies.  She has said that she wants to work with children like Pretzel and I think she will be fantastic at it as well.  She dotes on her little sister when she comes to visit and she has a very calm way of dealing with things.  She also got fantastic results with her GCSE exams and had some very high marks as well.  It must be something in the water that is making them all so smart!

And now we move on to myself and Zanna.  We have got some new courses that we are going to be taking to give ourselves a break away from the house and, hopefully, might lead to some new and exciting things for us.  We are both starting a photography course which is something we have wanted to do for a while.  We often see other families with beautiful photographs of places that they have visited but we always end up with blurred, fuzzy pictures.  The plan is to do this course and then go crazy taking pictures of anything and everything so we can start using them for this blog and other things we are planning for the future.  After we have finished that course we are going to be going on a creative writing short course so that we can learn more about how to create stories and characters.  We are planning to write some books for children and possibly even a series of books giving information about life as a parent of a SWAN child with an undiagnosed genetic condition.  On top of that I am continuing my studies with the Open University and I have changed my degree to study creative writing as well.  It is something that has become my passion and, as well as writing this blog, has taken up the majority of my time over the past few months.  I am busy working on some ideas for some short stories, poetry and I am also looking into doing more research on an idea that I have for a non-fiction book as well.  I have decided that I will write under a pen name though as I don’t want to influence people about myself, my family or my friends when they read anything that I write.  I may decide at a later date that I want to reveal what my pen name is but for the meantime I will be keeping it under wraps.

So there you have it, those are our new ideas and our fresh outlook to the remainder of this year and beyond but I want to know what you have planned for the rest of the year and beyond as well.  Are you starting any new projects? Have you decided to have a new outlook on life?  What is motivating you to go forward into the winter months?  Drop me a message in the comment section and let me know.

So until next time folks, Stay Safe and Keep Smiling!

Related articles

• Quote of the Week: Creating Yourself (cultofajracewood.wordpress.com)
• Life changes, are they important? (keithaddison.co.uk)
• Inspiring Quotes on Change (thebrightersideoflife.ca)

My hidden illness: 30 things you may not know

Hey folks, I wanted to post this up as I have had it sitting in my files for a while and I never could find the right time to put it up.  It is an article that is all about my hidden illness or in fact my hidden illnesses.  It may be something that you are not interested in but there may be a few things in there that you can identify with or that may even surprise you.  It is not my intention to offend anybody or to make anybody feel uncomfortable but I hope that there may be a little more understanding comes from it about the things I have to deal with on a daily basis due to each different hidden illness.  So here we go with the 30 things you may not know about my hidden illness:

1. The hidden illness I live with is:

Chronic Pain, Diabetes, Insomnia and Binge Eating Disorder

2. I was diagnosed with them in the years:

Chronic Back Pain – 2000/2001
Diabetes – 2010
Binge Eating Disorder – 2003
Insomnia – 2011

3. But I had symptoms since:

Chronic Back Pain – 1985
Diabetes – 2010
Binge Eating Disorder – 1993
Insomnia – 1993

4. The biggest adjustment I’ve had to make is:

With Chronic Pain I have had to accept the fact that I need to use a wheelchair to travel long distances and have adaptations made to my house to get into the shower. My memory is now a lot worse and it takes me twice (sometimes three times) as long to do tasks as I used to and if I don’t write it down I usually forget.

5. Most people assume:

That I am either faking it with the back pain, my Insomnia is a “poor night’s sleep” and my weight and binge eating disorder are just because I am greedy and eat all of the wrong foods.

6. The hardest part about mornings are:

Waking up in excruciating pain knowing that the day is going to sap the energy out of me even before I have finished my breakfast.

7. My favourite medical TV show is:

Embarrassing Bodies – Sometimes I wonder how the people on there haven’t pushed for a doctor to sort out the problem. It is fascinating but not for anyone without a strong stomach.

8. A gadget I couldn’t live without is:

My PC as it is where I do all of my writing, studying, gaming, internet use….pretty much everything in my life happens using this. I don’t know if that is a good or bad thing.

9. The hardest part about nights are:

Feeling absolutely exhausted from whatever I have done during the day but knowing as soon as my head hits the pillow I am going to be awake because of my insomnia. Sometimes I don’t sleep for 3 or 4 days at a time which is a nightmare.

10. Each day I take 43 pills & vitamins.  This totals 15,695 tablets in a whole year.

11. Regarding alternative treatments I:

Have tried TENS, Acupuncture, Pain Management Clinics, Massage, Aromatherapy, Herbal Tablets for sleeping, Meditation, Exercise Programs.

12. If I had to choose between an invisible illness or visible I would choose:

A visible one if anything as people might realise that you have a disability instead of assuming that you are just ‘faking it’ or that there is no reason for you using disabled facilities. Of course in an ideal world I would have neither but I guess that goes without saying 

13. Regarding working and career:

I can’t work as I am a carer for my disabled daughter. I am currently studying with the Open University to get a degree so that I have a chance at getting a job if I get the chance to when my daughter is older.

14. People would be surprised to know:

That I am constantly in pain as I try to keep a smile on my face and an upbeat attitude when I am out in public.

15. The hardest thing to accept about my new reality has been:

Accepting that I can’t do certain things that I used to do before I was diagnosed with these things.

16. Something I never thought I could do with my illness that I did was:

Lose weight as much as I have. I have been trying to lose weight for many years but because of my pain and binge eating it has been very difficult. I have managed to lose over 49lbs (22 kilos) since January this year (2012)

17. The commercials about my illness:

Are non-existent. Nobody seems to talk about chronic pain, insomnia or binge eating disorder in the media very much at all. It is something I am sure affects a lot of people but never gets discussed.

18. Something I really miss doing since I was diagnosed is:

Cooking. I wish I could get back to making meals and baking bread as it was one of the things that kept me very relaxed.

19. It was really hard to have to give up:

Playing music in a band. I loved doing this so much but now there is no way that I could jump around on the stage like I used to or move all of the equipment in and out of a venue.

20. A new hobby I have taken up since my diagnosis is:

Creative Writing and Blogging. I have enjoyed writing for my blog so much that I decided to look into other forms of writing and I’m loving it so far. It is a good way for me to empty my brain and gives me the best chance of sleeping at night.

21. If I could have one day of feeling normal again I would:

Go for a long walk and picnic with my wife & kids and then come back and play some bass guitar.

22. My illness has taught me:

That there is a lot of intolerance and ignorance in the world about disabilities and illnesses and especially if they are ‘hidden’. It has also taught me to be a lot more tolerant towards other people as well because you don’t know their situation without talking to them.

23. Want to know a secret? One thing people say that gets under my skin is:

‘You just need to get some exercise and lose some weight and you will be fine’.

24. But I love it when people:

Come to visit me when I don’t have the energy to go out. It doesn’t happen often but when it does, it makes my week!

25. My favourite motto, scripture, quote that gets me through tough times is:

“Life is 10% what happens to us and 90% how we react to it.” – Dennis P. Kimbro

26. When someone is diagnosed I’d like to tell them:

You are not the only person who is going through this. Stay strong and seek others who can support you and whom you can support.

27. Something that has surprised me about living with an illness is:

Just how much I used to take for granted in my daily life. Little things that I would do without thinking now take a great effort to achieve.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Sat with me for a whole day and watched films (my wife and kids) so that I wasn’t on my own and bored in bed.

29. I’m involved with Invisible Illness Week because:

There needs to be a lot more done to tell people about invisible illnesses and through invisible illness week there may be a chance to do just that.

30. The fact that you read this list makes me feel:

Very grateful for your time and I am so happy that there may be a little more understanding about my life and the things I go through each day.

So there you have it each hidden illness discuss a little bit.  I hope that this wasn’t too long for you folks and I am sorry that it is all about me but hey what are blogs for if it isn’t for talking about yourself!  I hope you found it interesting at least and now you have a little bit more about each hidden illness I suffer from  so you know where I am at mentally when I talk about these things on my blog.

So thank you for reading this and until next time folks, Stay Safe and Keep Smiling!

Related articles

• Eating my way to an early grave (sleeplessinnewcastle.wordpress.com)
• Why men don’t admit to binge eating (theglobeandmail.com)
• invisible illness week 2012 (phylor.wordpress.com)
• Diagnosis, Treatment, And Prevention Of Sleep Disorders (smmirror.com)
• Insomnia and anxiety (butterflywarrior.typepad.com)
• Insomniacs ‘should be given therapy not sleeping pills’ (independent.co.uk)
• Sleep: How to Deal with Insomnia (momitforward.com)

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!

What do you do with Family Time?

Hello again folks, This is post 2 of the Ultimate Blog Challenge

In this post I wanted to share with you what our family does with our spare time.  We are all creative at heart and we all love to make things for friends and family members to enjoy.  My wife’s particular hobby is Jewellery making.  She has a real talent for it in my opinion and whenever she makes a piece I am always blown away by the quality of it and the artistic flair of the design.  She doesn’t think that they are all that good but she makes them as presents for family members and friends but she has also sold a few pieces for charity.  Here are a few of the items she has made so far:

I think that they are pretty good wouldn’t you agree?  I would welcome any comments that you have on them.

My own hobby is woodcarving.  I had never even picked up a knife, chisel or gouge up until about a year ago when I decided I needed something to help me wind down and relax.  Fortunately, I have a lovely wife who allowed me to buy a full set of gouges and tools (they weren’t cheap) and I got cracking away at making all sorts of things.  I also have a crisis of confidence when it comes to the carvings so I never think they are all that good either.  I have a few here for you to look at:

Again any comments that you would like to make about them would be greatly appreciated.  I have only made things for friends and family so far but I would like to think that eventually I would get good enough to maybe sell a few pieces for charity.

Finally we move on to my daughter who is probably the most creative out of all of us.  She is always writing plays, poems, stories, scripts etc.  And she loves to make models and things like that.  She is really good and it is quite surprising what she can come up with from virtually nothing.  I have a picture here of one of the models she made for Easter with a sports theme :

Skateboarding, Parachuting and Abseiling were the sports we allowed her to include but believe me she wanted to use about 12 eggs!!!!!

Her other favourite things is to create animations and to create stories around these animations.   She also draws quite a lot and one of her drawings that she did was in a programme called Scratch and you can see it here

She drew it all using a mouse and the computer which I think is amazing as I certainly couldn’t do it.  She spends months at a time working on every little detail until she gets it just right.  If you were wanting to see some of her animation work you can look at it here

So as you can see we are definitely a creative bunch whether it is good or bad we enjoy doing it and have a lot of fun.

So what do you and your family do to relax and have fun?

Until Next time Stay Safe!