Cold and the memories it brings back

Yesterday was one of the worst times for feeling cold in my life.  We were heading to the SWAN North East get together for Christmas at the Alan Shearer Centre in Newcastle and we were really looking forward to it.

Firstly, we had to navigate the path to get to the car which we didn’t realise was covered in a film of thin ice and it almost had me flat on my back when my walking crutch slid out from underneath me.  Almost simultaneously someone further down the path slipped and hit the floor with a thud.  Luckily they were fine and I managed to get into the car without breaking my own neck as well.  It was so cold though.   It was the kind that seeps into your bones and makes you freezing cold from the inside out.  Not even the car heaters could touch how cold my ears, nose and cheeks had become.  It got me thinking about when was the worst time I had felt cold and that was when I lived in a house with my mum and sister in the Fairways Estate.

It was one of those houses which had the traditional outhouses but the outside toilet had long been put out of use, nothing was powered by coal anymore so they had become storage areas for bikes, tools and all the other rubbish that you accumulate in a house.  I would hate to think how bad it would have been to use the outside loo in the freezing cold weather we get here!  Anyway, the house was fairly large with 3 bedrooms and a bathroom upstairs and a living room, kitchen/dining room downstairs which had a passage leading to the back door and the rear garden.  The house was in fairly decent repair apart from two things,  the first being the hideous wood panels that lined the wall of the kitchen/dining room.  They were horrendous.  You know that typical 1980’s style ‘fashionable’ panels and they sat about a foot off the actual wall surface so it made the room smaller than it should be.  The second thing was the windows.  They were the really old single glazed kind of window which was divided into squares but they had another key thing wrong….they didn’t close properly.

The windows did close to a certain extent so that you could lock them but for some reason the frames were a little warped and  they had large gaps that would run around them.  This  meant that the outside temperature often dictated the inside temperature of the rooms.  We were having a really cold snap one year and that meant the cold air would seep in through these gaps into the rooms.  I was about 12 or 13 at the time and was doing what most teenagers do, hibernating in my room.

I vividly remember waking up one morning and I could see the breath coming from my mouth as I exhaled.  Looking over to the window I could see the ice that had created a film over the panes of glass and it had a distorting effect similar to that of a bathroom privacy window so nobody could see in.  It was only as I got closer to it that I realised it was on the INSIDE of the window.  Yup, the room was so cold the inside of my window had frozen.  I knew I had to get out of bed to go and warm up in the living room which was the only room that seemed to retain the heat.  Fortunately, by this point I had developed a system of getting dressed with minimum exposure.

It was a shuffle to the underwear drawer and wardrobe with the duvet wrapped tightly around my body.  A darting hand grabbed whatever clothing I could get my hands on and then it was a quick shimmy (still wrapped in the duvet) to put them on and finally a sprint downstairs to the warm air of the living room. Ten minutes by the fire was enough to warm you up and banish some of that lingering cold.

It wasn’t just the bedrooms that were cold though, imagine getting a bath in those conditions!  I think we all had the quickest baths of our lives in that house, never more than a good wash and sprint to get into bed or get clothes on so that you didn’t get a film of ice on your extremities. (I just laughed out loud thinking about icicles on your ‘you know what’.)  The kitchen was pretty bad as well.  I can remember boiling a kettle to make tea or coffee and holding my hand above the steam, not too close of course, to try and steal some of the heat to carry the cups back into the living room.

My mum had an accident due to the cold one day though when she was cooking something in the oven.  She had taken the grilling pan out of the hot oven and put it on the worktop.  She didn’t realise she had touched it with her skin until she tried to pull away and found she had slightly stuck to it and burnt herself.  It was that cold there was literally no sensation in her hands.  Thankfully there was no permanent damage, but it just goes to show just how bad that house really was!  Thankfully I wasn’t there for too much longer but I can honestly say that I don’t think I have ever been as cold as that any other time in my life.

When in your life have you been the coldest?  Was it a certain situation or a certain place that you can remember?  I would love to hear yours so drop me a message and let me know or write a post on it and I will stick a link up to it here.

Until next time folks,

Stay Safe and Keep Smiling (Keep Warm as well).

Related articles

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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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SWAN meet up: New friends to be made?….I hope so!

Today is the big day for us.  This is the day that the members of SWAN UK that live in the North East are getting together for the first time ever.  There have been a number of SWAN families getting together around the country and it has been a great success so far.  Unfortunately for a few families in the North East it was a little too far/expensive to travel to the big one so we decided to have our own little outing instead!

Swan Meet Up: Hesitation and Excitement

I am feeling a little apprehensive about the meeting though as much as I am excited at the same time.  I guess it is a side effect of being so socially isolated for such a long time that you don’t really know what to expect when you finally do put yourself out there for everyone to see.  It is a daunting experience but at the same time I know that the people I am meeting up with are also in the same situation and will be feeling the same nerves as well.

I guess there are some nerves there about Pretzel as well though because she has been getting a lot more violent recently and it is always a worry that she may lash out and hurt one of the other children or that one of her meltdowns may just spark off everyone else’s child as well.  I am also a bit nervous as well because I am still battling my binge eating demons and they have been resurfacing recently causing me to feel a lot more insecure than normal and to be a lot more body conscious at the same time. Don’t get me wrong, I am doing fantastically well in losing 50lbs since January this year and also finding my blood sugar levels have returned to ‘normal’ because of my weight loss.  That was a big surprise at my check up the other day but a very pleasant one!

SWAN Meet Up: New friends and a new social life?

I am hoping that this meeting of all of us in the North East is going to be one of many more in the future.  While I know that we all have different pressures and different issues to deal with in our lives, I do hope that we will find some time to just get together for a cup of coffee and a chat every now and then.  Actual human contact with people who understand what we are saying about Pretzel is so rare but when it does happen it can set us up for months just knowing that there are people who DO understand and who ARE interested in what we are saying.  I am not trying to take anything away from the rest of the wonderful SWAN family on the Facebook group but I am sure they would agree that actual conversation in person is far better than some text on a screen.

SWAN UK: Lauren Roberts

Finally I want to acknowledge the co-ordinator for SWAN UK, Lauren Roberts.  She does an enormous amount of work behind the scenes for SWAN UK and she is always on the go.  She has done a huge amount of work for SWAN UK and sometimes it is easy to forget just how much she does do.  The community that has grown around the Facebook page is one that is so strong because of her and the fact that she always stays involved with everybody and is always excited to see what is going on in the SWAN world.  I had the fortune to meet with Lauren at the Centre for Life in Newcastle (although it nearly didn’t happen because of the floods!) when we were speaking at the GenRes conference there.  She is a sweet and lovely person and so were the other SWAN mums that we met that day as well.  Lauren is currently touring around speaking to different groups all over the country to promote SWAN UK and the work that it does.  She not only liaises with families but she also acts as the go-between from the genetic testing clinics and the families from SWAN that use them.  So, here is to you Lauren, you do a fantastic job and I hope you finally have some of the recognition you deserve for it.  Thank you, even though I know you will hate me for bringing attention to you!

So at 1pm today I will be meeting up with all the folks I have been chatting to for may months now and hopefully, our kids will all be having a wonderful time together.  If the families don’t mind I will share some of the photos on my blog in the upcoming week so you can all see the fun times we will have!

Until then, Stay Safe and Keep Smiling! 

Related articles

• The first ever SWAN UK Family Funday! (swanuk.wordpress.com)
• ‘SWANderful’ to see SWAN in the papers (swanuk.wordpress.com)
• Superwoman: A dedication (keithaddison.co.uk)
• Another SWAN star in the news! (swanuk.wordpress.com)
• Grayson’s Great Funday! (swanuk.wordpress.com)
• A SWAN Song (rhubblog.com)
• New documentary on undiagnosed genetic conditions (swanuk.wordpress.com)
• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)

Tired, Stressed and Fed Up!

I am sure most parents are feeling tired, stressed and fed up right now as we are only 3 weeks into the Summer break but I am sure we have had just about the worst possible start we could have had to the holidays in quite a few years.  It always seems to be just at the time that we need the most resilience and the most energy to deal with Pretzel something happens to rob us of it and we spend weeks just trying to catch up.

photo credit Wikipedia

Just before the summer holidays began both Zanna and I fell ill with a flu-like bug that has been going around the doors over here in the UK.  Now you might think that doesn’t sound too bad but for us it is utter devastation, you see, as a special family we aren’t afforded the ‘luxury’ of calling in sick, taking time off or even taking a vacation whenever we want to.  The fact that both of us fell ill at the same time meant we had to take ‘shifts’ of being ill.  One of us laying resting while the other one picked up all of the slack.  Still doesn’t sound too bad though does it?  Well it does when you throw into the mix the fact that we know as soon as school finishes Pretzel decides she hates the change in her routine and we get the consistent, constant whining, groaning and moaning that starts the moment she gets up until the moment she goes to sleep at night.  It is something akin to ‘Chinese Water torture’ with a constant source of irritation slowly driving us insane.  I know it is not her fault but it is something that we have come to expect and that we know will require our complete focus and energy to deal with.

So the holidays began with us being low, not being rested and a bit wound up as our other daughter had just left Primary Education to go into Secondary Education.  It is a big time for Manga and, understandably, she has been a little tense and apprehensive about going into a new school where she will be the ‘new blood’.  She has to learn a whole new school layout, new lesson plan, meet new kids and start using public transport on her own for the very first time.  As you can imagine this is a pretty worrying time for us as well, she is growing up fast and it is hard to think about that little girl we once had running around the garden now becoming a fully independent, opinionated,  young adult.

As we predicted, 3 days into the holidays the screeching has started and doesn’t seem to be letting up any time soon.  I have had terrible sleepless nights recently, not to mention being hit with the flu-like bug at least twice more (or it not going away fully) not to mention my pain levels increasing steadily as I become more and more tired which is usually the case anyway.  Fortunately we have had some degree of respite in the fact that Pretzel has been awarded a priority placement on a play scheme for 3 days of the first 4 weeks of the holidays and BOY do we need it.  We still haven’t had time to relax while she has been there though as we have had so much to do with so many other things at the moment that we are fighting a losing battle to keep our sanity and our energy levels up.  Our only hope is that when Pretzel goes into our monthly 2 night respite place this weekend that we manage to get some quality sleep to feel like we aren’t as tired, stressed and fed up as much as we are now.

How have the holidays been treating your kids and your own sanity?  Have you had any problems trying to deal with the gauntlet of the Summer break?  Do you have any tips on keeping fed up children and screeching kids quiet during the holidays?

Until next time folks, Stay safe and keep smiling!

 

9 things special needs parents don't want to hear

Special Needs parents can get grouchy too you know!

I decided to write this post on the different things that have been said to my family and how I have felt across the years that I have been looking after Pretzel.  Some are said with malicious intent and some are things that have been said by family or friends who think they are being helpful but maybe don’t realise how hurtful their comments or actions can seem.  I am sure you have probably heard or done some of these before (I admit that I have before I had my special needs daughter) but there may be one or two things in there that you may not have thought about and they may surprise you.

I am often jealous. You may not think this would be the case but it is definitely true. When I see a 2 or 3 year old who can do what my daughter can’t do at 9 years old (such as talking), I feel jealous and it can upset me quite a bit. My daughter can’t point to tell me what she wants or tell me where it hurts when she is ill and it hurts me. Hearing about all of the things that your child can do is a reminder to me that my daughter isn’t able to do those things and it is like a twisting knife in my heart.  I have sometimes sat at night crying thinking about the things that my daughter will not get to do or enjoy.  Sometimes it is hard to see other special needs children who have a diagnosis because they are more understood by the general public and they often have support networks that they can access whereas I can’t because my daughter has an undiagnosed genetic condition.

I feel isolated. Parenting a special needs child is probably the most isolated I have ever felt in my whole life. Parents with ‘normal’ kids can make me feel very uncomfortable and even comment sometimes that they don’t want themselves or their kids to ‘catch’ what my daughter has. Other parents either shoot you that ‘I am so sorry for you look’ or spend so much time talking about their own child and their achievements that it makes me jealous or fed up.  Since finding SWAN UK it has been a little easier as I can talk to parents of other special needs children who are going through similar situations but, each child is affected in very different ways. Only I understand my daughter and her special needs fully and what caring for her entails. Because of this role that has been given to me, without my choosing, I can feel very isolated and especially if no one has visited in a while.

I am so very, very tired. Most parents will feel this at some point, but parenting a special needs child takes things to another level of tiredness. Even if I manage to get a good night’s sleep, or even if I manage to get some respite, there is still emotional and physical tiredness that comes from tending to the special needs of my child. Appointments with the hospital and doctors’ surgery are not just a few times a year, they may be a few times a month or even a few times a week. I have to do different therapies with my daughter which have to be done every day. Housework, shopping, review appointments for different services, fighting for equipment and services to make things easier for my child are things that eat into the time that I have available. This is not to mention how emotionally draining it can be raising a special needs child can be, it is like a rollercoaster, one minute you are on a high, the next you are plummeting down until you hit rock bottom.  This is why any small amount of help we get or any time to myself is very precious and is very much appreciated.

I wish you would not say things like: “retarded”, “slow”, “touched in the head” There is a strange thing with these phrases as I have heard them used both maliciously and to try and describe my daughter. They are awful phrases for me to hear in any regard but to have them associated with my daughter hurts even more. Please think before you use any kind of descriptive words about children with special needs as they are often hurtful both to the parent and the child themselves.  I believe people should be educated about this and I wrote about it in an earlier post called Is Education vital for key disability issues?

I am only human. I have been to Hell and back in raising my daughter. I have become a better person because of my daughter and I have developed a sense of empathy and patience that I would not have otherwise, however, I am exactly the same as other parents. Sometimes I get snappy and irritable, my daughter drives me up the wall, and sometimes I just want to lock myself away and get 5 minutes to myself.  I still have dreams and wants that need to be satisfied. I blog, listen to music, play on my Playstation 3, enjoy woodcarving, love to read books and watch mind-numbing TV like Family Guy or American Dad sometimes. I have to escape my role as a parent and carer every now and then and it is nice to be able to have a conversation that doesn’t centre around my special needs or my daughter.  Sometimes talking about my kids is the only human contact I will have in a week or even a month of visiting doctors or the hospital, so it is nice when I do see you to talk about other things than my daughter and her condition.

I am frightened. Do I do enough for my daughter? Have I forgotten an appointment or missed something that could improve our situation? I worry about the future for my daughter, Will she ever get married? Will she ever live independently? Will she ever learn to speak? I am scared that she will hurt herself as she is not aware of what danger is.  I am scared that she lashes out violently and hurts someone or she is hurt by somebody who doesn’t understand her special needs. I am scared about money and whether I will be able to keep up with the demands that her special needs carry with them.  I am scared that the services and equipment that she needs may not be provided in the future.I am terrified of what will happen to my daughter if something happened to me or her mother.  I am frightened to think that she will be relying on her sister when she gets older after we are no longer able to care for her. I am scared that one day I may be carrying a coffin with my daughter in it and that is something that has almost happened on a number of occasions.  It is the living day to day with the uncertainty of what tomorrow entails for my daughter even in the most basic sense that is the most scary thing to deal with.

I want to share information about my daughter/It’s hard to share information about my daughter. There are two sides to the coin and these are the choices. Sometimes I am overjoyed that my daughter has done something new or we have tried something with her and she has liked it.   There are other days where I may be trying to process something the doctors have said or something I have found out that I may not be ready to discuss just yet. Sometimes I have hidden what the doctors have said because I don’t want to admit it to myself or upset or unnecessarily worry my family. There are still things that I haven’t been able to tell my family about my daughter and I probably never will.  There are the days when I do want to share my feelings but you are better to ask a question that relates specifically to one subject such as “How did Pretzel enjoy the first play date with the one-to-one support worker?”  I am more likely to be able to start to share if you ask a question like this rather than “How is Pretzel doing?”.  This type of question usually gets the response “O.K” as I often can’t be bothered to go through the mountain of things that you may not see ‘behind the scenes’ after you have finished your visit.

I get frustrated and angry.  I get very frustrated and angry when you don’t listen to what I tell you about my daughter.  For example when you talk to my daughter and I tell you that she doesn’t understand what you are saying and she can’t talk back to you, please don’t look at me like I am an idiot.  She may be 9 years old but she has the developmental level of an 18 month old child so don’t expect her to do something you wouldn’t expect of a child who was 18 months old.  I also get angry and frustrated when you treat her like she is a ticking time bomb.  She is just like other children and loves to have a cuddle and a tickle so please don’t treat her like she is about to explode in a cluster of seizures or act in some unpredictable way that will be anything different to any other child at her developmental age.  She may have special needs but she has emotions and feelings just like other children so please try and be sensitive to those as well.

I get extremely touchy and fed up.  I don’t know how many times I have heard that I should be doing this or trying that with my daughter.  If you want to suggest a treatment, teaching method or some other thing that I should be doing with my daughter, PLEASE DON’T. I appreciate the thought but my daughter is not like any other special needs child that you have encountered and in all likelihood if you have heard of it or tried it SO HAVE WE! I know that sounds touchy but you can sue me.  Every day someone tells me what I should or shouldn’t be doing with my daughter for one thing or another and it has driven me to get very shirty with people because the best doctors in the world have been stumped by my daughter so what makes you an expert on the subject?  Not all difficulties faced by special needs children are the same.  For example a child on the autistic spectrum can be very  different to another child on the same spectrum and a child with profound learning difficulties can experience them in very different areas to another child, so please don’t think that whatever worked for you will automatically work for me and my daughter.  Only myself and my family see the work that we put in to get even the most basic pattern recognition with my daughter and it has taken almost 5 years of constant repetition for her to recognise a single word.  Please don’t try to undermine that work by dismissing it as ‘not being enough’.

 

 I hope I haven’t alienated any of you with this post but it was something that had been sitting on my mind for a few days now and I could only think about writing it the way that I have gone about writing all of my other posts, honestly and straight from the heart.  I apologise if you are offended by this in any way but it is a truthful insight into what happens at various times throughout the journey we are taking in caring for Pretzel.  In saying that there are a number of times and a number of people who have enriched our lives.  They are the people who make this difficult journey more tolerable and there are some times when I truly feel blessed to have the opportunity to travel this road that I am on with my daughter.  I have grown as a person and I appreciate every tiny little detail of life as each and every one is something we were told was not going to happen.  When you face those odds I will take whatever I can get, wherever I can get it!

Until next time folks, 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!

Where is your inspiration as a 'Special' Parent?

Hello once again folks and welcome to Day 13 of the Ultimate Blog Challenge

I wanted to take this opportunity to share a post that I have seen before but that was brought to my attention once again by an excellent blogger over at Love Life and Be Gentle, Shannon Verissimo.  Her latest post entitled The Special Mother (or Father) included a lovely short essay that was written by Erma Bombeck and it captures exactly how I feel about all mothers of special needs children and occasionally, I would like to think us fathers as well.  Every day I see my family, especially my lovely wife, go through so many difficult situations and deal with so many conflicting emotions that it makes me feel a little down at times but then I am able to gather strength from reading these few words.  They pick me up and make me thankful that I have someone in my life who has made me realise just how much I used to take for granted.

I am not religious in any way and I know that this story features ‘God’ but I like to think of it as whichever deity or religious figure you personally choose to put faith in and I hope you are able to gain some kind of comfort from the essay as I do.  So here it is:

The Special Mother

 

angels are here (Photo credit: AlicePopkorn)

 

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

 

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

 

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

 

“Rutledge, Carrie; twins. Patron saint, Matthew.”

 

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

 

The angel is curious. “Why this one God? She’s so happy.”

 

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

 

“But has she patience?” asks the angel.

 

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

 

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

 

“But, Lord, I don’t think she even believes in you.”

 

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

 

The angel gasps – “selfishness? is that a virtue?”

 

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word'”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”

 

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

 

“And what about her Patron saint?” asks the angel, his pen poised in mid-air.

 

God smiles, “A mirror will suffice.”

 

I hope that you can agree with me that this is a truly beautiful piece of writing and I hope it can inspire you to appreciate the small things around you as I do.

A big thank you to Erma for writing it and a big thank you to Shannon for bringing it to my attention once again.

Until next time folks, Stay Safe!

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!

Are you holding the fruit?

Hello Again Folks, This is day 3 of the Ultimate Blog Challenge

I have been quite fortunate to have started blogging just as this challenge was beginning as it has allowed me to see some great blogs, read some fantastic stories and also look at some breathtaking blog designs.  One in particular that caught my eye early on was Just Bring The Chocolate.

On there Renata posted this post about how she felt at the Britmums Live ceremony and it got me thinking about the situation that many families and individuals face when they have been in a caring role for a long period of time.

I can only speak of being a carer of a child with special needs but I think the experience is similar for most carers.  When I was first put into the carer role I had to adapt very quickly to a lot of changes regarding my daughter’s health and all of the medical appointments that came with it.  I went from having spare time to being booked up literally every single day with either an appointment with a specialist or some kind of therapy that my daughter needed. Quite quickly you become secondary to your child as you are given a patient number, a case file and de-humanised into some ‘case notes’.  As Renata puts it:

“Normally no one notices me however, as it is so rare for me to be anywhere without my far cuter side kick….I’m merely [his] plus one”

I can’t think of the amount of times that I have felt surplus to requirements as they prod, poke and scratch their heads trying to think about what to do next with my daughter, especially as I am a father as well.  I don’t want to come across as one of those people who plead that they are hard done by but, in my personal experience, I get overlooked and quite often ignored if I attend an appointment with my wife.  It is as if I am not there and I have heard tales from other mothers that their partners have ‘given up’ attending the appointments as there is no point in them being there.  This is something I have actively fought and now I will interject myself into a conversation if I feel I am left out but I can understand why it can be intimidating for some.

As I took on the caring role I found myself having very little time for friends and family and even when I did see them there was an evident look of discomfort on their faces if my daughter was around or the subject came up in conversation.  I found myself trying to make them feel at ease and diverting conversation on to other topics which was mentally exhausting.  Having to worry about how they felt when, as Renata colourfully put it:

“…you don’t have the energy left to reach over and take the last bit of Toblerone….. most evenings.”

Eaten Toblerone (Photo credit: yum9me)

Slowly those friends find excuses not to come around or they are ‘busy’ when you call until, eventually, they disappear into the ether leaving you alone and a little more isolated.  At this point I turned to family and would go and visit my step-mother or my grandmother, or Nana as I call her. There I could talk and vent off a little steam about pretty much anything which made me feel a little better but all the while the contact with everyone, even family, starts to slowly dwindle away. I realise that people have their own lives and their own schedules but when you are getting up every single morning and the first thing you do is check to see if your child is still breathing, it starts to take a toll on you mentally as well as physically.  I was lucky to be sleeping for an hour a night at that time and both myself and my wife felt very isolated and very alone.  

In the midst of all of this was our other daughter who, to a certain extent, started to get isolated as well because friends couldn’t come to stay over or come over for tea as we were often so tired we could barely function.  It is often the sibling that gets left out and I think there is a real danger that they can feel pushed to one side and less valued because so much time is spent dealing with their sick sibling.  In fact it did happen to me as I explained in my post Are There Different Levels of Caring?. It is a devastating feeling to think that one of your children feels less valued than the other because they don’t get as much attention but looking at it from a child’s point of view I can fully understand why.  When you are caring it takes over your life, and I mean your social life, love life, spare time and sleep time.  It still feels like it is crushing and smothering at times like I can’t escape this unbearable pressure of responsibility until eventually something clicked in me and I became an automaton.  It felt like every second of every day was consumed by the caring responsibility until I lost all sense of who I was as an individual.  The frustration, despair and resentment of being stripped of my identity slowly welled up inside until one day I broke down into tears in front of my wife and daughter and simply said:

“I simply cannot do this any more”

I ended up taking antidepressants and continued to do so for a very long time.  Eventually my wife did as well and we would often yo-yo between the two of us trying to pick the other one up when we were down. This just added to the sense of isolation and withdrew us even more into our ‘special needs bubble existence’ where all we did was for our daughter and nothing else.  The internet became our ‘social life’ with us either sitting playing World of Warcraft until the small hours of the morning or sitting on Facebook pining away for the social lives of the people that we knew.  Like Renata we would often look through photographs smiling but then realise minutes later that we were crying, yearning for that connection with the life we once had.

When I read Renata’s post about how isolated she felt and she used the term:

“I felt like the one stood by the door holding a watermelon gawping” (in reference to the film Dirty Dancing)

I could not stop laughing at first but then it started to dawn on me…….I was standing right by her with another watermelon and I suspect that the same is true of most carers.  We sacrifice so much to make sure that the most vulnerable person in our family is cared for that we start to isolate ourselves to the point where we feel disassociated with ‘normal’ society. Things have only started to change recently since I found the group SWAN UK whom I spoke of in this post Caring for a Special Needs Family.  Through speaking to the members of that group I slowly started to come out of my shell and feel like I had an identity once more.  I became more involved in the chats, talking about all kinds of things and then I was lucky enough to meet Lauren Roberts who is the project co-ordinator for SWAN UK, at the GenRes convention at the Centre for Life in Newcastle.  There my family and I, along with some other mothers,  spoke to a room of around 40-50 people relaying a little insight into what is our daily life.  I was so nervous to think about talking to so many people but I was so proud of all of my family to be able to sit there and tell people what we have been through.

So please do check out the post that Renata made on her blog Just Bring The Chocolate and thank you for the inspiration for this post.  You made me think about how we are starting to see the light at the end of the tunnel for our isolation as a family and I am proud to call each and every member of SWAN UK my family of superhumans.  We deal with things a lot of people cannot and would not want to imagine and to us it is just another day in our life.

And to all of you carers out there I want to ask:

“Are you holding the fruit along with us?”

Thank you for listening and until tomorrow, Stay Safe!

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.