SWANderful days out!

Hello there folks, I thought that I would write a post about having an undiagnosed child and the support (or lack of it) that we have been able to find for our family.   Nobody ever seems to be forthcoming with this kind of information and it is something that is vital for any family who was going through a similar situation as the one that we deal with on a day-to-day basis.

When Pretzel was officially determined as disabled, we were given no information on any kind of support groups, families or any other kind of services that could provide us with support, guidance and help in dealing with the news. Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’

There are a number of organisations local to where we live who attempt to provide day trips and outings, play areas and other recreational activities for disabled children, however, not all of these places or activities are suitable for children who have extensive special needs or those who do not like busy and noisy environments. This is the reason why families with children like Pretzel often feel isolated, cut-off and that they are dealing with their problems on their own.

This is why the idea that Swan UK has had of creating separate groups for each area of the country (we fall under the north-east category) means that families local to one another can get together in a social and caring environment which caters for all of the children and their particular needs. My family recently attended a North-East get-together for a picnic in a local park and it was fantastic to get to know some of the faces behind the forum names and also meet the children and let them play together with no form of judgement or ‘sympathetic’ looks that make the children and their families very self-conscious.

It was amazing how quickly the children engaged with each other and also how quickly the families started talking to each other about all kinds of aspects of caring for the children but also everything that they like to do that isn’t involved with caring for the children. This last point is probably the most important because when you deal with children with complex medical or physical needs can be very tiring, it can bring your energy very quickly and can often lead you to use shying away from social interaction of any kind with anybody including other members of the family and friends.

It is saddening thought to think that there are not more places but can offer this type of help to families in our situation but it makes me feel hopeful that organisations such as Swan UK can provide such an opportunity for children and their families to do activities together but in an environment where there are other families experiencing the same situation the same worries, the same anxiety and often the same opinions on how to get through the toughest of days that others who are not in this situation can find difficult even to imagine.

It is funny to think that a network of people who’ve never met each other, or, who have had very limited contact with each other, can be so close to each other as a family. Swan UK has a fantastic group of members who send birthday cards, get well soon cards and who offer words of support to each other through the good times and bad times 24 hours a day, seven days a week, 365 days a year.  The sad thing about this is that this type of support relies on charity and donations and is not something provided by the government. It often demeans carers and also the people they care for to have to rely on charity to be able to purchase essential equipment, services and facilities.

I do hope that Swan UK managed to secure the funding for these local get-togethers as it has been the first time that my family has been able to go out and enjoy themselves without any kind of ill feeling or embarrassment to simply ‘be who they are’ and be understood by other people’

We have another meeting on 1 December this year where we will be attending the Alan Shearer activity centre in Newcastle which has the facilities to allow our children to play in a hydrotherapy pool, ball pool and soft play and a sensory cave together.  This will probably be the only opportunity for our children to experience this kind of phone over the Christmas period as it is often difficult for us to organise all of the essential things that we need to be able to take pretzel out to enjoy these activities on her own.

If you would like to help out Swan UK and support their wonderful work which includes these types of days out and activities for children like pretzel to enjoy, then you can donate at: https://uk.virginmoneygiving.com/fundraiser-web/donate/makeDonationForCharityDisplay.action?charityId=1002602&frequencyType=S

If you do make a donation then please could you please comment in the Message Box stating that it did for Swan UK. That will ensure that your donation gets to the correct part of the Genetic Alliance.

Thanks for listening folks,

until next time Be Safe and Keep Smiling

Related articles

• South West Christmas Party
• SWAN UK Summer of Fun
• Camp Amazing!
• Waterbabies Grants are GO!!
• SWAN UK Funday number 2!

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)

Life is definitely no smooth road

Life is definitely no smooth road – Motivational Monday

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

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

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

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

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

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

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

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

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

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

So until next time Stay Safe and Stay Smiling!

Related articles

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

Land of Confusion, can you help?

Hi once again folks, this is post 18 of the Ultimate Blog Challenge!

I am in a bit of a confused state with this blog and where it is going to head in future and I am hoping you lovely folks will be able to rescue me with some rational thinking.

When I started this blog it was to start talking about how I was feeling as a father, about my feelings to with my own disability and to share the experiences and stories of caring for my daughter.  Since that time I have managed to get so much support from the people who read this blog and the comments I have had have been so supportive.  There is also the fact that I have found it to be so very therapeutic for myself to be able to clear my head of my worries, concerns and any negative thoughts I may have normally held on to.  I have read so many excellent blogs, spoken to so many awesome people and had so many new ideas about how I want to carry on writing and posting.  That has given me a little problem though that I seem to struggle with each time I come to writing a post.  I am having a running battle with myself as to what ‘fits’ with this blog.  For example I have written a list of different topics that I would love to talk about or post photographs about but they don’t seem to ‘fit’ with the subjects that I have discussed previously about my family or disabilities.  So do I include these in my posts on this blog or should I try to refine what topics I do discuss to make them fit my previous discussions?

My dilemma!

For example I would love to try my hand at writing some fiction, poetry, or short stories. I also thought about possibly doing some reviews of products relating to various disabilities or even maybe talking about the work that I do for charity.  All of these are things that would be totally new to me but offer the chance to expand on how I write and hopefully to improve how well I put myself across to the world.  Having said that, I would never want to alienate the people who read my blogs as you have all made so much of a difference to me that I would like to keep you as part of the blogging experience.

Can you pick out the puzzle pieces to help answer my questions?

So I am left thinking about what to do, should I start up some separate blogs to try out these different subjects or should I create some separate pages on my blog that contain some of these different things or should I abandon these ideas altogether and stick to what I have been writing in the blog up to now?  Don’t get me wrong I won’t be abandoning the subject of the blog as it is now I would just vary the different types of things that I do blog about in future.  I figure the best way for me to do it is to let you folks, the readers of my blog decide what you would like to read about from the mind of little old me.

Should I stick with what I am doing or would you like to see me blog about different subjects along with the ones I cover at the moment?

I really do appreciate all of your support so I would appreciate it if you could let me know what your opinion is.  Leave a comment and tell me if there is a subject you think I would be good at talking about or if the suggestions I have given would be an option.

Thanks again folks and until next time, Stay safe and keep smiling!

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!