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 Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’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

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Is education vital for key disability issues?

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

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

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

The international symbol for accessibility (Photo credit: Wikipedia)

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

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

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

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

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

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

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

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

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

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

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

IPC Logo (Official Website of the Paralympic Movement)

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

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

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

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

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

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

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

 

Do you have a personal Angel?

Hello again folks, This is day 6 of the Ultimate blog Challenge!

I warn you now that this post might get a bit sloppy. If you are someone who doesn’t care for mushy stuff look away now!

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I owe this lady, this Angel, my everything!

There is no-one I know that is more dedicated to their family than my wife Suzanne, or Zanna as she likes to be called. When we had our first date on the 12th April 1997, I knew that I had found ‘the one’. I hadn’t been in any relationships, I was 17 years old, she had just left a long term relationship and she had a 1 year old daughter. Everything told me (including some friends and family) that I should stay clear and find someone without so much baggage. But you see the problem was I was totally and utterly in love. Not the lustful teenage boy love, I mean the love where you can’t bear to be apart and when you are you can’t stop thinking about them. She made me the happiest man alive on 17th July 1999 when she became Mrs Suzanne Addison. Ever since then we have stuck together through some things that even the best of couples would have struggled with. Financial struggles, house moves (there have been oh so many), Deaths of parents and our daughter being born with special needs. These times have tried and tested our mettle, patience and ability to hold back our anger and frustration, but you know what we have very rarely argued with each other or had any huge rows because we are best friends. I can talk to Zanna about anything.

Zanna is one of those very special people you come across once in a millenium. She is utterly selfless and she would bend over backwards to help anybody out. SHe will sacrifice things in a heartbeat if she knows that she can do something for someone else, yet she never complains about it and she never expects to get anything back. She is kind, sweet natured, so very loving and such a devoted mother. She has numerous talents such as her jewellery making I spoke about in What do you do with family time? , Acting, Crafts of all sorts and most of all being a mother.

I knwo all mothers care for their kids and would do anything for them but Zanna goes way, way beyond that. She not only has to care for our 11 year old every day, she not only cares for our disabled daughter every day but she also has to care for me. It is something that I can never thank her enough for. She works her fingers to the bone, rushing around to get things done, never stopping until she sits down on an evening in front of the TV and says “I don’t know why I am so tired”. I know why she is tired, because from the moment she gets up she is in her carer mode and she thinks only of what she can do for other people. It is so bad, I have to put my foot down and demand that she takes a break to do something for herself every now and then. Even when I do she is so reluctant to let go of the reins and relax. That is why she is a genuine diamond. A most priceless gem that can never be replaced.

A little while back I hit some very, very dark times in my life. I have spoken about my Binge Eating Disorder in Eating My Way Into An Early Grave and I had very low self-esteem and, I am quite ashamed to admit, I had suicidal thoughts. I had planned out the way I would take my own life and I thought about it every day at one point. I felt worthless as my weight was skyrocketing, the pain was driving me insane (it still does today) and I couldn’t see a way out of it so I thought I would take the ‘easy’ way out. Zanna was the one who picked me up, gave me the support and love that I needed to see that there was a way out and that I was valued as a person, that I was more than my weight and my pain. Slowly over time she helped me get my confidence back never once doubting me, praising me whenever I achieved even a small thing. For that I can never repay her except by trying to be the husband, companion and friend that she truly deserves.

Zanna, for everything you have done for the girls I thank you. They all love you very much and I hope you will read this and realise that what you do is very appreciated. From me, you are my love, my friend and my soulmate. I couldn’t do any of this without you and as our 13th anniversary approaches I hope that we have so many more years together. I wan’t to spend every day waking up with you, every day kissing you in the morning, every day trying to express to you how much love there is in my heart and that it all belongs to you. You are what holds this family of ours together and the girls are all a credit to you and the hard work and effort you put in every day without a break.

I love you momma bear!

(Photo credit: Wikipedia)

Caring for a Special Needs Family

Hello again folks!

Well what a dramatic past day it was in my home city of Newcastle!  

We had rain, floods, property, road and pavement damage. There was massive disruption to public transport, emergency services and power all over the city.  To see some of the spectacular images captured you can go here 

I wanted to take the opportunity in this post to talk about a group that has become a major part of my life and also provided me with a group of friends who are as close to me now as family.  That is what SWAN UK has become a big, strong family but to tell you about them I want to go back a little first.

When my youngest daughter was born with her special needs we had to go through a long process of medical testing, genetic testing and discovery of how we were going to change and adapt to looking after a baby who was ‘different’ to how our other children had been.  Little did we know that this would involve fighting tooth and nail for everything, researching so many medical terms and filling out so many forms and repeating ourselves that it would make anyone insane.  Along with this comes a whole set of things that affect families of children like ours that other people find hard to appreciate.

Firstly there is the slow realisation that your child will not do a lot of things that other children will do.  This is a double edged sword because at the time of first being told you go through a grievance for the things your child has ‘lost’.  With hindsight, this is probably one of those times where families need support the most because it is a time of tears, utter devastation and hopelessness.  As a family we felt so alone and by alone I mean that we had no family who could understand what we were going through, no friends who had been in a similar situation and no other families that we had been given to talk to by the medical teams who dealt with us through that time.  The isolation was soul destroying and led all of us to sink into a dark place of feeling like we were the only people in the world who were going through this tough time.  That is when we turned to the internet.

(photo credit Konstantin Leonov)

We searched and searched for answers.  Answers about tests that were being done, questions being asked and for any kind of support group that would let us connect with others just to talk.  It sounds like such a simple thing but we couldn’t talk to anyone about how we felt, what our fears were and what to expect for the future.  Friends slowly started to drift away because they didn’t know what to say or how to act around my daughter, family struggled to understand and either said ‘Don’t worry, they will get better’ or ‘I just don’t know how you cope’.  They couldn’t understand or comprehend what we were going through and I know in their own way they were trying to help but it only made us either feel worse or even more alone.  It became a scenario where our lives revolved around medical staff, hospitals, GP’s and filling out forms.  We all stopped spending time as a family because we simply didn’t have much time left.  I didn’t have time for a social life or even time to spend with my wife which meant we felt slightly more distant from each other and like we were drifting apart. Adding to all of this we were getting around 1-2 hours sleep per night as our daughter was either having seizures or would not sleep.  By feeling alone, I mean totally alone, as individuals and as a family unit.

The saving grace was my stepmum, Joyce.  I hate calling her my stepmum as she was like a mother and did everything for me.  I used to visit her at least twice a week and just sit and talk over a couple of cups of coffee.  She was great at listening and I could vent to her about everything, getting advice for certain things and soothing, calming talks at other times. She would do anything for any of her grandchildren and her first thought when she spoke to me was of my daughters and how they were doing and what they had been up to.  It was because of her that I managed to get in touch with a group called SWAN after she had seen a feature on TV about a group for people without a diagnosis.

SWAN was a group that had been set up by a grandmother who had a granddaughter with a  Syndrome Without A Name.  We joined the forum thinking that we couldn’t believe our luck as there seemed to be a place for us with families that had no diagnosis and were travelling the same route as we were.  We felt overjoyed…..until we looked at the forums and it was filled with post after post of people asking if other children had similar symptoms as their child.  Hundreds of posts one after the other with various families reaching out to get information that might give an insight into getting some answers.  It was too much for us to take and we left the site feeling it was not doing anything that would help us personally. I want to say at this point that it wasn’t the fault of anyone involved with the original SWAN site but it was the place that we, as a family, were in on our special journey that meant we weren’t strong enough to deal with so many people asking questions.

Over the next few years we became recluses in our home.  We had no friends left to go and visit, we didn’t have time to commit to any sort of group or activity so we again turned to the internet and we started to play online roleplay games, in particular World of Warcraft.  This was our outlet. When the day was done and the kids were in bed we would log on and play for a few hours to try and relax and forget.  We did meet some fantastic people while we were playing and we still play occasionally and we still stay in touch with them as well.  We even went on holiday to Malta and while we were there, met up with them and their family and really enjoyed it.  I don’t know if they even know how much their friendship and support over the years has actually saved our sanity. A big thank you to them for being there through the thick and thin for us and listening to us moan, groan, laugh and cry throughout the years.

 It was at this time we were dealt another massive blow, my stepmum Joyce was diagnosed with cancer and on October 6th , 2010 she passed away. It hit the whole family hard. She was a wonderful woman and the way she touched all of our lives is something that can never be forgotten.  She was a real diamond and I miss her every single day.  Every time I get good news I still go to pick up the phone to call her. I still think ‘What would she say or do?’ every time I make a decision or think about what to do next.  She was a true diamond and I hope she is somewhere proud of the man she helped me to become as I owe her more than anyone can imagine.

After years of struggling the fight came back to us after we managed to get some regular respite care for our daughter.  We had to fight tooth and nail for it but by this time it was nothing that was new to us as we have had to fight for everything.  I decided that I wasn’t going to sit in the house and mope around any more, I wanted to make a difference and tell people why things were so bad for families in our situation.  This is when I decided to look up SWAN again to see if they were still around and if I could help in any way.  I got a big surprise…..

SWAN had become SWAN UK and had been taken under the wing of the Genetic Alliance. The changes were huge from what I could see.  The first port of contact for me was via the Facebook group.  I filled out the application forms and joined up to find that there was a huge amount of activity on the group passing tips, information, stories and to my surprise laughing and joking about a number of different things.   For the first time in 8 years I felt that I had found somewhere I could talk and be heard, listen and be appreciated.  I felt that there was no taboo, no boundaries to what could and couldn’t be said for fear of offending someone and somewhere that I could both offer and receive advice and feel like I was part of something.  The families that I have spoken to via the Facebook group have become like my own family.  They are like brothers, sisters, nieces and nephews all part of the bigger picture and all now part of our journey through our life caring for a special needs child.  It is through that family that I decided to start this blog and through that family that I got the chance to talk to people about our experiences in the hope that SWAN UK can really make a difference in the future for families who find they have a child with a Syndrome Without A Name.  The hope is for me that as SWAN UK starts to grow and the community becomes bigger and stronger then our voice will get bigger and stronger to make sure that no family has to go through the isolation, fear and dark places that my family and I have had to experience.

(photo from Freefoto.com)

Because of SWAN UK our little cygnet, once lost in the mud and mire of finding a diagnosis, finding answers and explanations had developed into a ‘SWAN’.  A child with an identity in a bigger picture, a beautiful and unique child who had a family of other unique children to call family.  We were no longer alone in our searching, no longer alone in trying to find answers to what, why, where and when?

We had a home.

Are there different levels of caring?

Hey again folks

This post is one that I wasn’t planning to do but I guess I feel the need to do after something came to light for me today.

Now I as I mentioned in a previous post I have two daughters that live with me.  One who is 11 years old and my disabled daughter who has just turned 9.  They are both the most treasured and loved things in my life along with my wife and I would do anything for them.  So here is the problem I discovered today.

As my daughter is severely disabled and needs a lot of care time and attention we often have to focus our energies on looking after her and making sure she doesn’t come to any harm.  She is 9 years old but functions on a level of an 18 month to 2 year old baby.  This means that everything that needs to be done for a baby of that age needs to be done for her but the other major factors are the height, weight and the fact that she is able to walk.  So things like changing her, feeding her, washing her and carrying her are so energy zapping and that is before the fact that she can’t communicate so the frustrated bites, kicks, punches, head butts and scratches add to the fact that she takes so much looking after.

Unfortunately this means that our other 11 year old daughter often gets left to her own devices which seems to suit her fine as she loves to be on the computer in her room talking to friends via Skype, playing games and also drawing, designing and role-playing.  We felt that she was old enough and sensible enough to have the responsibility of having a computer in her bedroom but she was given strict conditions as to how things would work.  I told her that her e-mail address had to be forwarded to my e-mail account as well to make sure that there were no unsavoury or unwanted e-mails getting through that I didn’t want her to see, that her Skype had only ‘real world’ friends that she knew from school and if she wanted to use certain programs or websites she would ask us first.  I also told her up front that I would be able to monitor her internet history as well.  We also allowed her top use a mobile phone which had unlimited text messages, 30 minutes of call time and 100MB of data use on the condition that she didn’t use it to surf the internet because of the low data limit, and that she keep at least 10 mins of her talk time so that she could call us in an emergency situation.

Now I know at this point some people may think that this is invading her privacy and that I may be strict or putting too many rules into the mix but I feel strongly that the internet can be a dangerous place for ANYBODY let alone an 11 year old girl and also anything sent via e-mail, text on a phone or comments on a forum are not private in the first place as they can be read by a number of people.  I appreciate we live in an era different to when I grew up and technology is a wonderful thing but it can also be used for many dark and twisted things.  I want to protect my children but yet give them the freedom to use the information and gadgets as they should be used.

About a month ago I found out that my daughter had added people to Skype she didn’t know and changed the privacy settings to allow anyone to contact her.  Her profile and her friends profiles had ages on that were not accurate (most said 16-18 years old), she was streaming information from her computer to a friends computer to let her see what she was doing and she had set up another e-mail account so that I did not see what was coming to her e-mail address.  Now at this point I will say that I did not open any of her mails that came from her friends and they were deleted immediately but any coming from unknown sources were checked and removed if I felt it necessary.  As a result of all this she had her internet access taken away as a punishment.  She was given it back  a couple of weeks ago on the condition that she removed the unknown people from Skype and changed the privacy options back, did not stream any more and closed down the E-mail address that she had created.

Anyway here we come to the situation today.

We were checking through our bills paying them off when we came to our daughter’s mobile phone bill which was over double the amount that it should be so we decided that we would look into it.  We found that the data usage was through the roof and that we had been charged the extra for the overuse.  I decided that I needed to check when the data had been used so I looked at her phone.  It seems that when she had no internet access as a punishment she had been using her mobile phone instead.  I also noticed that she had been sending text messages to her friends as late as midnight on school nights.  Now we have always had set bed times for our kids for a long time which have gotten later as they grow older.  Our 11 year old’s bedtime on a school evening is 9pm but we ask that she is off her computer by 8:30pm so she can wind down before going to bed.  On a weekend she is allowed to stay up later as there is no school the following morning.

One of the text messages caught my eye and it really upset me.  She remarked to her friend how she is ‘forgotten about’ and that ‘her sister gets bought presents more than her and even when they are both bought presents her sisters are always better’. Now we have always made a point of trying to make things fair between all of our children and we never leave any one of them out of anything and we try to do everything we can for them.  We have even sacrificed a lot of things that we would like to make sure that they have nice things like clothes, laptops, toys, holidays (we took them to Florida 3 times) etc.  Our disabled daughter often doesn’t get bought things from family for her birthday due to the fact that it is difficult to say what types of toys she can play with and it is even harder to get hold of them.  This means that we often keep hold of money and order things from a sensory toy catalogue or try to pick things up that we see when they become available in the ‘normal’ shops. At this point I have to say that my 11 year old has been on school trips, outings with the guides, comes on holiday with us while our disabled daughter stays in respite, has just been given a laptop in place of her desktop, has her mobile phone contract paid for and regularly gets bought full sets of books that she wants to read.

So I must admit I was hurt quite a bit by this statement but it also got me asking the question ‘Are there different levels of caring?’ 

Now I care about all of my kids equally and would do anything for them as I have already said but I also have to care for my disabled daughter in a different way but allocate a lot of my attention to her needs.  So could this be seen as caring less for my other daughters?  In my heart I say there is definitely no difference as they are all equal in my affections and there is no different levels between them but then my head also tells me that from the perspective of my other daughters the time and energy I spend looking after my disabled daughter could be misconstrued as caring more for her than them.

It also got me asking the question ‘What level of attention is the correct amount?’

Now if I was to focus all of my attention on my 11 year old I would have no doubt that she would get pretty sick of it very soon but when you ask her what activities she wants to do together or if she would like to go somewhere with us we get the typical teenage response of ‘Not bothered’ or ‘Anything’.  Now I am not so far detached from my teenage years that I think that every other parent doesn’t have this problem but as the time I have with her (usually when my other daughter is in respite) is so precious to us and comes once a month, I am left clueless as to how I should approach her with ideas or even if she wants to spend time with me.  She never asks if she can have friends over (or if she does it is usually after a stressful day when we have had a number of meltdowns from our disabled daughter) and I don’t know if that is because she is embarrassed by me and her mother or if it is something to do with her little sister and her disability.  Yet she often remarks to her friends that she feels ‘lonely, isolated’ and she is ‘dying inside’ and I have no idea what to do.

The worst part for me was another of her texts that was sent when her mother and her sister had to attend an appointment and she was left in the house with me.  It was along the lines of ‘My mam and my sister have gone to the hospital.  I feel so lonely without them’ I was devastated.  I don’t know how to explain the feelings that are running through me at the moment.  I desperately want my daughter to come to me and give me hugs and have that close relationship with her but for some reason she isn’t feeling comfortable with me and I don’t know how I can fix it.  I feel both lost as a parent and a failure as a father.  I don’t understand what it is I have done that makes her feel lonely when I am around and just why it is that she can’t come to me or her mother with these feelings.  I try my best to have a joke with her, spend time with her and even try to take an interest in what she is doing by offering to buy animation software for her and join in with a project but I get pushed away each time with no interest whatsoever.  So do I leave her alone, try to keep up with the attempts or just stop caring (there is no way I could even think about the latter)?

I never chose to have a daughter with a disability and I never chose to have to spend all of my time and energy looking after her but I DO choose to love her and do as much as I can for her exactly the same as I would for any of my children.

So do I feel bitter about my situation?  You bet your life I do.  Would I change my situation if I could?  You bet your life I would.  Would I trade places with my disabled daughter if I thought she could have a life where she could experience the world the way I would like her to?  You bet your life I would.  Do I resent my daughter for having the disability and taking my time and attention to look after her?  Do I HELL and I never will resent that fact.

 However, I do feel lost, confused and uncertain as to what I should do next.  How should I deal with these feelings of hurt and sadness that my daughters wont have a ‘normal’ life and won’t experience a lot of the things that some other families might experience? How do I deal with the disappointment that my daughter doesn’t see the loving father I am trying to be despite the fact we have to deal with all the crap in day to day life?  I just hope I can find the answers to these problems and try to figure out how to connect with my 11 year old daughter and build that relationship that she obviously feels is missing and hopefully maybe I can become a better person and a better father in the process.

With Father’s day being this Sunday do I feel that I deserve to have a gift or card from my kids?

I have to say I don’t really, no.

Well I will leave you on that slightly depressing note and with a doozy of a long post.

Until next time stay safe

The still of the night

This is my gorgeous family and I love each and every one of them!

Hello Again Folks!

Once more I am awake in the wee small hours so I thought I would spend the time writing on my blog!  Why not, that is what it is here for I guess 🙂

I guess I should maybe go over some back history and fill you in on some of the details about my life.

I guess the best place to start would be when I met my beautiful wife.  It was in 1997, when I was 18 years old and I was at a theatre workshop in the centre of Newcastle.  I had been persuaded to go by a friend as it was during the holidays and wasn’t classed as part of the performing arts studies I was taking at the time.  Anyway when we got there I noticed this really good looking woman who I must admit I fell in love with at first sight.  Now I know what you are going to say, one that is so cheesy and two how did I know what love was at 18 years old?  I don’t know what it was but I just knew that she was the one for me.  Unfortunately at the time she was breaking up from a relationship and had a 1 year old child so I thought that I had no chance at all but we got on really well and loved talking to each other.  Anyway I managed to get a date with her and we sat for hours and hours talking and things progressed from there until eventually I proposed to her and we got married in 1999. I loved spending time with my stepdaughter and I couldn’t wait for her to come and visit so we could spend time playing in the park or going for picnics.  My family absolutely adored her and she was immediately accepted as one of  our family.  Then in 2000 my daughter was born and I was at the birth and it is one of the best feelings I have ever had. I loved the kids and my wife and I thought life was pretty sweet even though we had money troubles and numerous other things going on I could always look at them and feel content with my lot.  Then in 2003 we had another daughter but things did not go as smoothly as we had hoped…..

My wife went through a very traumatic labour and we knew things were not quite right. It was her third child and she knew things weren’t happening as they should be.  The Heart rate for the baby kept dipping low every time there was a contraction to the point it was off the chart.  I kept asking about it but all they did was ‘observe’ every 20 minutes what was happening.  They then decided they would do a foetal blood sample which involves draining some blood from the baby’s head whilst it is still in utero.  This was a very traumatic experience for my wife and I can remember the midwife begging her to have an epidural as the whole time she had only been using Entonox (gas and air).  I had a really bad needle phobia and needed some fresh air so I decided to leave and come back later.  I remember it so well as it was around 3am and I made my way outside the hospital to phone my dad. The whole time I was on the phone I can remember thinking ‘I am coming home either without my wife or without my child’.  This is the one thing that still sticks with me to this day and I will never forget that feeling.  After the call I made my way back to the room where thankfully my wife had managed to get some rest.  Anyway to cut a long labour short my daughter was born and immediately it was apparent something was wrong.  She was the colour of an aubergine and wasn’t making a sound.  They placed her on my wife’s chest and started to rub her vigorously for about a minute.  Still no response so they took her away to a resuscitation table in the corner of the room.  My wife and I looked at each other and I will never forget the expression that crossed her face.  It said ‘That’s it, game over, she didn’t make it’.  I have never seen that kind of raw emotion in an expression before and it is permanently marked in my memory and even thinking about it now brings tears to my eyes.  I thought my daughter had died.

All of a sudden there was a cry……..

My little fighter had taken that first big step and clawed her way back to us.  The relief was overwhelming and it was the most beautiful sound in the world.  My baby had said I want to be part of that family and fought her way back to us from the brink.  However, there was a price to be paid.  When they checked her over they noticed she had some abnormal facial features and she also had low set, partially rotated ears.  They said they would need her to be checked over just to see if everything was ok. We didn’t think too much of it and were just happy to have her with us.  We were discharged the following day and went home.

We arrived at A&E 2 hours later in an ambulance after my daughter had a ‘blue episode’.  We had put her down on a changing mat while we had something to eat and noticed her struggling to breathe and she started to turn blue.  we called 999 and were rushed straight to A&E.  They noticed when she was there that she was severely jaundiced, her oxygen saturation was very low and she was hypoglycaemic to a level of almost being comatose. We were told as we had been discharged from maternity we couldn’t go back so we ended up on a childrens ward in a private room.  They went through a battery of metabolic testing and found nothing in particular wrong so after a week or so we were sent back home.  Everything went fine for the next couple of months until at 5 months old we noticed my daughter making some odd movements so we called our GP.  My wife took our daughter to the surgery and was told ‘it could be a cold’ or ‘it is just something she does when she is tired’.  We didn’t accept this and decided to telephone our consultant who had been performing all of the tests at the hospital and once we described the movements he said ‘I want you to bring her in immediately’.  That was the first of many of my daughter’s Infantile Spasms (a form of epilepsy).

We went through hell in that first year with a barrage of possible syndromes, diseases, conditions and all manner of names thrown at us.  Some with life expectancies of 10 years maximum, some with a lot less years.  We had every different name thrown at us and not one scrap of information that was useful for us.  We had to fight through things for ourselves and piece the bits and bobs we could get from anywhere together to try and understand what our future held.  Eventually the most they could tell us was that she had Epilepsy, Global Developmental Delay, Bilateral Optic Atrophy, Unknown hearing problems and some atrophy of her frontal lobes of her brain.  So clinically she does not have a diagnosis but she is a SWAN (Syndrome Without A Name, a group of people I will talk about in another post).

So we had to adapt our life as a family and accept the fact that we had a little girl who would need heaps of attention, care and a lot of extra love and patience from all of us. We have had many turbulent times through the 9 years that my daughter has been with us (including almost losing her 3 times) and we have had to fight for everything every step of the way but this is offset by a few things that people may not expect.  I have had many people say to me ‘I don’t know how you cope’ or ‘It must be awful having to deal with everything that you have to do’ and I always think to myself…..

I never thought I would have her with me as part of my wonderful family!

This is the thought that makes everything worthwhile. That and the big smiles and laughs that make the world a nicer place to be.

I know that my daughter has given me more than anyone can appreciate.  I am a better person for having her with me.  I am more patient than I ever was in dealing with her tantrums, behaviours and lack of understanding.  I get to appreciate things more than other parents do because every little tiny thing she does is a major achievement.  All of the things that other parents take for granted like their child talking, walking, smiling, asking for things, saying ‘I love you Mammy/Daddy’,  all these things may never come from my daughter but the small things she does do are all the more celebrated and praised. She is 9 years old but her mental capacity is 2 years old and she has taught me more than anybody else I have ever encountered.  I love her so much and all of my daughters make me a proud man and I know they will be fine examples of young women when they grow up because they have had every ounce of love and support from us in every way and they always will have.  So now as I write this our oldest daughter is about to start 6th form at school, our other daughter is about to start secondary school in September and our youngest daughter is hitting targets with her school, making progress in other areas and is still fighting to be as independent as she can be.

Wow well that post was a doozy and I hope that it hasn’t bored the pants off anyone.  That is a background on my caring role and next up will be the story about the chronic pain.  I guess in a way I am fortunate as I can write all this stuff when I am suffering with my insomnia as I probably wouldn’t have time to do it otherwise!

So until next time Stay Safe!