Actions Louder than Words

I sat indoors this morning by myself and had one of those moments where your brain runs into full steam ahead mode and you get sudden bursts of realisation.

Since being diagnosed with severe osteoarthritis in my right hip and mild in my left, my whole outlook and the way I go about life has changed.  It has also affected my family in a big way.  I have suffered physically and mentally in lots of ways, I had to give work up as the pain whilst driving was ridiculous, also my medication makes me very tired and also can affect my mood so driving is not a good idea, standing, sitting you name it, they all cause me agony.  Once I was at home I thought I'd be able to help around the house as much as possible, i.e carrying out every day chores just to take the strain from my wonderful wife Karen, also spending much needed quality time with Karen and the children, again all aspects of what they were doing.

These things I have realised for very different reasons are becoming a combination of difficult, impossible and harmful in different ways.  Here is why: I gave up work through the agony of Arthritis so as I am now finding out I can't do as much round the house as I would like, quite simply because as you all know bending, walking, learning on your knees tidying, stood up doing things all take physical effort which I am restricted with at the moment.

With regard to my wife and children, while my mindset tells me "yay" play and interact with the kids and be with my wife 24/7, it has struck me today as not beneficial to anybody.  Karen has tried for months upon months to tell me this, she has explained that I need to take a step back from them all as I am not only smothering the children, I am also hampering Karen's routine for the children.  They are both "Daddy Daddy Daddy" all the time, but this morning I have realised not only am I undoing my gorgeous wife's hard work, routine and effort with them, I am also holding Karen back from doing as much with the children as she would like to.  I need to take myself out on my bike or even a long slow stroll while Karen stays in with the kids.

I have to do this to show my wife how much I love and respect her for the non stop good she has done.  I realise I have already instilled bad habits into the children, but if I let go and make the changes, ok it will be tough but I want the kids to know that Mummy is very much as important as Daddy.   This will also make me a better person inside.  Karen has done so much more with the children than I have so I need them to know that and appreciate that.  With Oliver especially I find it heartbreaking and so draining that it's "Daddy can do this Daddy can do that", why can't mummy put him down for a nap, she is his mum after all and I have ruined that for her.

The other aspect I must explain is how much Karen loves, worries and cares about me, and is affected by my Arthritis.  She is constantly giving me  opportunities to rest and generally trying her very best to help me.  I must realise that by being a stubborn idiot it is affecting everybody.

Karen also has Samuel 24/7 with his disability and so many different issues to deal with.  With our two very demanding toddlers and me to cope with and look after she has the day to day running of the house.  She constantly tries to do her best with our children, like taking them to various stay and play groups, creation station and other things i.e the park, the beach, the quay.

My wife does all of these things for us and she keeps going and going and going. Today is the day I am going to start giving back and listening, today is the day I stop saying yes nod my head, I love you nod my head, l am listening nod my head and never do things, no today is the day I start showing my wife the love, respect and acknowledgement of what she says and what she does.  Not just idle words anymore, I am going to do all this with actions.  Far too many of us suffer from saying the right thing but not doing them, well today I shall make my actions count and I will show my wife how much I love her for everything. Today is the day my actions are louder than my words.

I will help listen, take on board what is asked of me, by doing this I can truly give something back to my family.  I am a good Dad and Husband but I can also hold my hands up now to my failings and mistakes and this can only improve things.

This post is dedicated to my gorgeous wonderful wife who is my life, my soulmate, my best friend.

Thanks for reading. Gary.

I am not my father

When most little boys start out in life's adventure many of us have looked up to and been taught and learnt from our dad's.  They tend to lay the foundations alongside our mum's to our first path in life, and are our role models. Well it started like that for me when I was young enough to remember, my dad was, to me, Superdad.

This is where it quickly changed and from a young age I was determined that everything wrong about my dad, would make me become everything he failed to become.  Now I look back and about the only good thing I remember was him popping me on his shoulders when I was tired.  My dad had a very big reputation in the 60's and 70's as being a hard-nut, gambler and crook.  This reputation followed him about so much that I had other children including my own little friends being told stories about him.  In the street I often heard whispers, "that's Ron Marquick's son, best leave him alone".

Now to some it may sound good having such a formidable figure of a dad, but not to me.  From a very young age I quickly understood where my mums unhappiness came from and at nights when laid in bed hearing her screaming, yes this was my dad hitting my mum, I even witnessed the poor woman being dragged across the landing by her hair.  She was always accused of having affairs with everybody from Terry the postman to Martin the Martian.  He timed her every movement, clocked her to and from the shops, and also kept note of every penny so she had to explain every bit of money spent.

My thoughts were why could this arsehole and control freak, who was doing this to my mum not get off his own idol backside and do these things?. No, I am sure the smug fat man got kicks from this.  Anyway back to me.  It became very apparent because I had not become a mini him, that I was deemed a failure in his eyes.  Did he come to a parents evening? No.  Did he attend a sports day? No.  All he ever uttered in between putting me down was how I was a girl and a pansy, and why was I not a fighter, a boxer, a trouble maker?

I had a brain and I knew right from wrong.  As I got older I tried to take some pressure away from my mums own personal torture.  When he was in a mood,  which was most nights I would back chat him to try and get him to focus on me instead of my mum.  This worked and even though I would never be a match for my father, my mum, although worried downstairs was getting some respite.  He wore me down in arguments even when I was right I was always wrong (if this makes sense).

Then on top of this would come my few beatings.  He once smacked me so hard across my legs it marked me very badly, so I showed him, I put shorts on and went to play with my friends outside.  Now his reputation was being tarnished by a boy, yes I had started to become a genius in mind games.

Some of you may wonder why my mum did not leave and take us with her.  Well in those days she would have lived in fear knowing that he would have hunted her down.  I would not like to think what he would have done to her. I also remember taking many trips home in police cars when aged between 4-8 years old as he would go places, mainly the social office, just looking to kick off, resulting in chairs and tables flung about in anger and police being called.

My Dad had to stop work in the late 70's early 80's due to falling down stairs whilst working as a taxi driver, back then you only had to sneeze to become disabled (in the dodgy way) and get away with it.  This is why I got hacked off that he had no interest in me or my schooling when I was young, but in hindsight it was nice not having him involved as it probably would have ruined me.

In the 60's he spent time inside for fraud yet again a big boast from him, even claiming he was in the scrubs at the same time as the Krays.  As I was growing up I was desperate to work and to make something of my life.  I left school when I was 14 years old as I was offered a part time job in the local cash and carry in Oxford.  Wow, a job, I truly was impressed at earning £56 a week, but every week whilst living at home I was forced into paying it all into the house, simply to feed us and also fund my dad's fag and gambling habit.

When I turned 18 I was offered full time worked and grabbed this with both hands.  By this time I was getting wiser, so when I got paid cash in a wage packet I would gently open and slide some money out.  I would never show him my wage slips and sure enough I started to get money hidden and actually for me. The only problem I had was buying stuff and hiding it.  Then came the going out with my friends to get drunk, my solution was to pretend to be at a mates all night drinking can's, again this worked.

I also remember our yearly family holidays and looking back at them they were quite awful.  My mum could not avoid the beatings and the arguing and neither could I avoid arguments with my dad.  We would spend half the holiday parked outside the bookies or at least half sat in the caravan listening to him watching racing, generally losing, then just wanting to kick off.

I could write and write and write but I think you get a picture of what a monster my dad was.  What has come out of this for me is that I respect women and hate hearing of any violence towards them.  I have a massive protective sheet around Karen and Issy.  I believe I am a fantastic husband and dad and I take time and interest in what my family do and I am very proud of my children's achievements.

Mine and my mums bond is fantastic, my dad passed away 14 years ago and my mum has since met a fabulous man who has gone on to become her husband and I can only thank him for putting happiness, belief, trust and respect and most of all love back into my mums life.  Sometimes I well up and cry at the thought of what my dad did, but that's in the past and this is now, we are all enjoying life as best we can and long may it continue.

Cherish what you have.  If you have found somebody you truly love then treat them with love and respect.  Don't be shy to hold hands, cuddle and kiss.  Even with children you can keep that flame, even though a tired one, brightly burning by just showing each other that you care.  Look back to the start of your journey together when you also had those butterflies, believe me when you are with the right person they never go away.

I still pop up in goosebumps on my arms with the simplest of things, a hair stroke a neck tickle etc, so be strong in life be yourself and most of all love what you have.

Thanks for reading it means so much to me. Gary x

Why won't he Sleep?

Well this post is focusing on the struggles for Karen and I and also for Samuel regarding his bedtime.

As in previous posts you will be aware of Samuel's 22q11 deletion syndrome and so this leads me to a more in depth insight into another challenge we have - bedtime.

Usually we start to approach bedtime by Karen asking Samuel to get himself ready, this is usually about 8:30pm which is a reasonable bedtime considering his disability and his massive need for at least 10 hours sleep.  Karen by this time has done special time and calm down time with Samuel, after Oliver and Isabella's have gone to bed.  Then at 8.30 Samuel is asked to pop his pull up pants on (another condition associated with 22q11 is bed wetting).

After a few cave boy style grunts in which boy child demands mum goes up with him and finally striking up a deal to pop up in 5 minutes he starts moving like a snail in reverse, and slower than a Stannah stair lift he eventually lands safely in planet bedroom.  Barely 3 minutes elapses and Samuel seems to come down quicker than a cat on a hot tin roof, with battering ram style he falls through the door, "mum mum" he bellows, "you said you were coming up".  Karen, to avoid in house riot takes Samuel back upstairs and does the goodnight routine again.

After 5-15 minutes we hear the pitter patter (thud thud) of the boy child.  We now know he is on the warpath to destruct the adults evening, which in Samuel's eyes seems to be a new covert mission.  So the fun begins (sarcasm).  Karen asks Samuel to go back to bed, "no" comes the reply, Samuel you need to go to bed, no he replies again, so the consequences kick in, Samuel if you do not go to bed then you have lost tomorrow's use of your netbook, still a refusal and this continues until we need a removal firm in as he has had everything confiscated for the following day.  At that point he would go upstairs, putting all the lights on, and sit there until eventually falling asleep.

We have scrambled, argued, agreed, disagreed, asked him, shouted at him and slowly but surely we noticed bedtime was getting worse.  Then came the massive dip, we had run out of so many ideas we asked Samuel what would keep him in bed and calm him and help him sleep.  Samuel's answer like a mad scientist but a sane one in the working had said a DVD please mummy, well puppy dog eyes and a flag of surrender from us we agreed, we wanted to try anything, so after the film had finished Karen went to turn the film off and so our new fun began.

Samuel came trotting down after 5 minutes and said he could not sleep and would not leave the front room unless mum went and curled up in bed with him.  Obviously mum refused.  We have 2 toddlers that nod by themselves so mum was not making a rod for her own back.  Samuel responded in gladiator style "then you shall not move me, I will fight till the end", and fight the little groat did.  We asked several times for him to return to his bed and got told no deal each time, this led us to try the silent treatment, which resulted in Samuel going hypo and noisy causing noise and chaos for 3-4 hours.

After we finally admitted defeat we decided to go to bed ourselves at midnight and sure enough cave boy scurried upstairs and into bed, after we had closed our door he was up and flicked his light on until I got up at 3 to go to the toilet.  This happened night after night and the demands got more and more, we were just at a total loss as how to deal with this and the later Samuel stays up it makes it an awful atmosphere in the morning as he refuses to get up and is angry and very aggressive.

Finally we had a date with the sleep clinic as we were at breaking point.  We needed help and like every good parent knows asking for help is a sign of strength and togetherness.  We did not want to keep going how we were, I must add in that one night Samuel had punched me in the mouth so yes it really had got that bad.

Our appointment arrived and Karen went to see Mr Sleep Doctor, he has agreed to come and survey things and see if we can some how arrive at a plan of action.  We hope so, we need it as does Samuel as the stress at times is so hard and Samuel will eventually become ill because of severe lack of sleep.

So I have added another chapter of Samuel's constant struggle with a disability that so few people know about or have any answers to. We as parents must keep plodding along and doing what we do best, that is never giving up on Samuel and always fighting to raise a tiny bit of awareness.

Thank you so much for reading it means the world to me..... Gary

Daddy's Humble Pie

After seeing my gorgeous daughter Isabella being born, I was very unlucky and got struck down with suspected swine flu.  This meant that for seven days after her birth I was in basic isolation in our bedroom and quite out of it.  After recovering and being able to integrate with my babies again I found that I was, without knowing, was giving Oliver more daddy time than Isabella.  I could not pinpoint this at the time but something was missing and I was baffled, after all my wife had provided me with the most gorgeous beautiful daughter.

I was stuck in a really funny mindset as I knew I loved my children all equally and yes we love them the same but also in peculiar ways a tad different, if that makes sense.  I was starting to understand with Oliver why I seemed to be doing everything to Oliver's call and whistle and putting Issy on the back burner.  I have a 10 year old son, Harry, who lives in Oxford as I left his mum when he was two. I can now see that I had become scared of rejection and being pushed away by Oliver as I knew I would be heading into uncharted territory with him once he got to two.  I had not done the potty training with Harry and had not been a big enough part of his life to have a say and help him develop a tad of his dads ways (lucky I hear you say).

I knew my daddy love and parenting skills had to change with Oliver because although at the time, that extra bit of t.v, the extra chunk of chocolate, the outstretched arms with cute eyes saying "pick me up daddy" as my legs are going to drop off scenario, that "lift me out of my buggy daddy as I need a cuddle and mum can push a £600 pound pram along the promenade empty", yes all of this I am guilty as charged and knew it had to stop.

So it was 4-5 months ago that the penny dropped and I realised that although I was not hurting my son I was teaching him and allowing him to drop into awful habits.  Plus I did not want Isabella watching and copying. Just to say mine and Isabella's bond has grown to such a massive one that it feels like the love and care and attention I have for my daughter could explode out of me at anytime!  It took me a while but we are bonded just the same as I am with Oliver and although Oliver still does get a bit more daddy attention, but I am working on that.

My first job to tackle was the picking up and carrying of Olly.  It had got to the stage where I may as well have had Velcro attached to me and, this was a) Making him very lazy and b) Sending out the wrong signal. Each time he whinged I would pick him up, a quick fix but only short term solution. Anyway as per ear bend from wife and the long pointed wagging index finger I stopped picking Oliver up every minute of every day. I must say that it took a long time, but he very quickly got used to daddy only picking him up if he had properly hurt himself or when we just wanted to share a random cuddle.  This also started straight away giving me some much needed Isabella time, which is just as magical as Oliver time.

My second issue to tackle was Olivers eating habits.  I truly believed that if Oliver had a mouthful of dinner and made no effort to eat anymore then it was fine and dandy for old chubby fingers me to pick his fork up and feed feed feed, but oh no, old pointy index finger got me again.  Karen explained how lazy Oliver had become with his eating now daddy was feeding him and how this again would affect his development.  My train of thought was that if I got him to eat then all was well.  Wifey was right though.  I left Oliver for a few nights and sure enough this excellent little boy with his table manners and lovely feeding skills was now back up and running.  Hooray listen number two and low and behold success number two.

My last task to tackle is my inability to say no to Oliver.  For example, Oliver being the eldest of my two children living with me had become very territorial with his toys.  He will shout as if being murdered when Isabella tries to join in, or attempts to pick a toy up, and my way was to give Oliver the toy he screamed for and palm Issy off with anything that was within reach.  By this time I turned to Mrs Marquick, her of pointy waggy finger, and she told me we needed to start by teaching Olly to share.  This worked a treat the next time he screamed that Issy had taken from him I asked him to share and for him to pick a toy for Issy, although this started as a bogey or paperclip lol, it has progressed that Olly will now share very good toys with Issy and he also knows she won't ruin them.

It is all still a massive work in progress with Oliver but my word by accepting help and advice from Karen my gorgeous wife we are slowly starting to notice massive steps forward by Oliver and he is learning slowly all the right things are the best things. It will take time to iron out the bad habits that I have instilled in him, but please remember if you have children the correct and sometimes what seems hard road is the best road. It works, believe me our house is settling into a much more productive and happy house now that daddy is no longer afraid of being rejected.  Children flourish from being taught the right things/ways. Thanks for reading G.

Fresh Start for the Pools

Having been a proud Poolie (Hartlepool United) fan for as many years as I can remember nobody can doubt that for such a small club with limited resources, we have had lots of lows (endless reapplying to the football league for re-election) and a few (cough cough) relegation's.  

We have also gathered a nice bit of credit over the last 10 or so years, playoff final although a defeat was a massive high and plus for everybody associated with the club.  Every Poolie will have been as proud punch to have got into the playoffs as this meaning the season had been a lofty finish.  We also had our promotions; both our last two we were so close to capturing the league title but still a huge punching above our weight achievement.

Now I live 327 miles away from The Vic and have a very young family so my forays these days are away games which are within striking distance (usually a hundred miles away max) the rest of my following is via my Pools Player which I subscribe to each year, although the new console is not great and not without its problems, but there is excellent commentary from the ever bubbly Mark Simpson.  On top of this my financial outlay always borders ridiculous in my bank statements, eyes on what I spend each season on Pools.  Generally me and the boys both have home and away shirts.  This season me and Karen (wifey) and kids have sponsored club legend, Club captain and all round fantastic guy Ritchie Humphreys away shirt.  We have had the honour on a few occasions of meeting Ritchie and he has always taken the time to have a quick chat and never grumbles at having photos taken with us.  Our wall in the front room is a Poolie shrine with pictures of various players and a fantastic framed card of the players autographs.  Also me and my two toddlers have two bricks on the centenary wall.

Our expenses to visit our away games has run into hundreds, so we really are south coast massive Hartlepool fans. So this leads me to give a quick insight into the modern Hartlepool side and manager choice.  Our squad when you dissect it has, on paper, some fantastic players worthy on their best days of getting into a lot of peoples this era Poolie squads.  For Instance we have Scott Flinders, he has emerged into a fantastic keeper for us, Jack Baldwin will surely play in the Championship, if not higher, Peter Hartley and Sam Collins both on their days tanks and solid centre backs, Ritchie Humphreys Legend, Paul Murray solid no nonsense wears his heart on his sleeve (wish he was 10 years younger) and Tony Sweeney engine and eye for goal.  James Poole oozes talent and just needs a string of games to show it, Luke James is a rough diamond but is so talented it is scary, Andy Monkhouse now is a really steady workhorse and Simon Walton is going to be class for us as long as he gets a fair crack of the whip.  This is to mention but a few.

So on their best days we all know these footballers can do it.  We have seen this from them all. Now after a fantastic start to last season (9 unbeaten I believe) we hit an awful slump and lost countless games at home and this cost Mick Wadsworth his job.  Micky Barron and Ritchie took over the ship and in my eyes did a blooming good job with Luke James bursting on the scene being a massive plus point.  Our next appointment to everybody's delight including mine was all round nice guy and in some peoples eyes a near God as far as Poolie managers goes, Mr Neale Cooper.  Now I have a strict no matter how much you like a guy, in football going back for second dibs at a club very rarely works, but I crossed my fingers and hoped.  Cooper in all his 11 months back, for whatever reason, just could not work his magic.  Who knows what went on and we can all guess and speculate but not for the want of trying things just did not work.  I remember being at the Wycombe game last season and it was the most lacklustre performance I had seen from a ~Pools side, combined with the fact Wycombe were fighting for safety and also had what seemed like 654 loan players popping up everywhere, we were well and truly drubbed 5-0.  My only consolation was that it was a scorching hot afternoon and they did half decent food.  

After that game I remember telling Karen that I felt we were on a slippery slope and sure enough our season just petered out.  This season we have only added 3 players to our squad but I felt with the players who came in we would have a pretty decent squad to really push on and have a right go at the league this season.  On the downside our form this season has been nothing short of **** (well you can fill your own blanks).  This led to Neale Cooper doing what we all knew was coming and he resigned. Short-term Micky Barron has been put in charge until we (swiftly) in my eyes put a new manager in the hot seat.  Again we will all have our own ideas who we want at the helm.  I would like to see Phil Brown come in.  We have already proven for whatever reason after Saturdays game we have found a bit of our Never Say Die Spirit.  We have a long way to go but I just have a feeling some fresh ideas the right starting 11 and we can get out of this mess.

You may call me stupid but believe me if we can get going in the right direction we can still salvage something from this season.  So lets do what us Poolies do best, lets stick together and support the lads like we always do and lets as a collective unit get out of this mini slump and quick.

My final two things are:

1. We need to keep Noble and Wyke for the season and; 
2. This is my modern era Poolie select squad. 

GK Dimi 
RB Micky Barron
CB Graeme Lee
CB Michael Nelson
LB Hugh Robertson
LM Ritchie Humphreys
CM Tommy Miller
CM Mark Tinkler
RM Tony Sweeney
CF Joel Porter
CF Adam Boyd

Subs: Flinders, Collins, Murray, Brown, E Williams

Just remember once a Poolie always a Poolie

Poolies are born not made

Samuel and Me - Part 2

So as promised Part 2 of Samuel and me.  If you've read Part 1 you've had a tiny explanation as to Samuel's disability 22q11 Deletion Syndrome.  I would like to now share a few more things that affect Samuel and obviously us as a family.

As we found out Samuel is not a naughty boy, he is a child with a disability and he just struggles to get by as do so many other children with the same and similar disabilities.  It is far too easy for outsiders to assume children with various invisible disabilities are naughty, why don't you just come and ask if it bothers you that much.  So many parents experience this and it is a shame.

Samuel can get very hyperactive at times, particularly when excited about something, although tiredness is also a huge factor.  At night he can yo-yo up and down stairs for hours before finally giving in to sleep.  This then knocks on to the following morning as then Samuel refuses to rise from bed as he is still wiped out.  What follows is growling, shouting, huffing and puffing and sometimes hitting out.  Once he has dragged his body out of bed it then becomes a battle to get him into the shower and he has to shower as most nights he will have wet the bed, although recently medication is giving us a few dry nights.  Samuel is not keen on cleanliness for some reason, but once in the shower he is not too bad, although he has to be reminded to use shower gel.  So just getting him up and showered can take up to 45 minutes for what would generally be a 5 minute job.

Now Samuel also has the "fluff syndrome", that is he can be distracted by a piece of fluff, so this causes us to often have to repeat things 30 times and we cannot ask Samuel to do two things at once as his brain just would not process either yet alone one.  We don't ask Samuel to do any chores apart from bringing his pull up pants (due to the wet beds) down and to bin them, plus sometimes to tidy his room. 

Another habit of Samuel's is that he has a tendency to leave me a mud monkey log in the toilet!  He tends not to wipe, flush or wash his hands, and we have to constantly remind him, but this can be met with anger as he doesn't like doing it.  He just doesn't understand the importance of hygiene.  Plus, its nearly always me that gets my eyes burnt out by the poo odour! 

Samuel also has difficulties in showing empathy and appreciation.  He does appreciate things that are done for him, but as soon as anything is done he quickly wants to move onto the next thing and he perhaps doesn't act or show emotion as would be expected.  This can be deflating at the time but you have to quickly remember this is not deliberate.  One such example is that when we went to watch Hartlepool United last easter as a family for a special weekend, and we managed to on top of everything else to get Samuel to be a mascot.  Now to all other children that are into football this is a once in a lifetime experience and you would expect them to talk about this with everybody family/friends/school, and to show real excitement and appreciation.  Samuel loved every moment and did himself and us proud (we took some great pics), but as soon as we got home it was like it was forgotten and he just was wanting whatever was next.

A massive plus to Samuel's personality is just how much he loves his family.  He loves caring for and helping look after his brother and sister, and he would often bend over backwards to do so.  It seems as though he has a mature side to him when asked to entertain or just generally help with the little ones and this is just a joy to watch.

Now as this will be spread over a few posts I want to now share just a small bit about the school side of things.  Karen applied for a Statement of Special Education Needs for Samuel after he started school, and after a battle with his school, she managed to achieve this for Samuel.  This enabled for him to have a teaching assistant at school for 10 hours a week.  This was put into place at his first school, so at just 5 years old he was already needing help.  Karen knew that the statement had to be reviewed every year and she also knew of what a massive job she had to do just to ensure Samuel kept his statement and thus the support of a teaching assistant.  Karen managed like the Supermum she is to keep getting it renewed each year and by doing this getting the help Samuel needed just to get by as best he could.  Now considering as each school year passed Samuel dropped further behind his peers, Karen managed to get Samuel up to 20 hours per week, and his school were putting in additional support on top of the statemented hours.  To all intense and purposes he was getting nearly full time support.  Our next massive task and challenge was to try and get Samuel accepted for a special needs school as Samuel would have just shrunk without trace once he got to secondary school age.  Also already evident at school was the mainly verbal bullying that had started, and this was wearing Samuel down.  After yet much fight and various reports to try and help get Samuel into special school we finally got the news we wanted early this year and he was accepted into a local special school.

As a family we were just so excited about this.  Samuel has been at his new school for three weeks and the difference in him is fantastic school wise.  He loves it.  So any parents out there thinking can we/ can't we, push for special school and don't be put off my the stigma, please do it your child will flourish and they are what is important. 

Anyway Samuel's disability will never go away and certain aspects may get worse, but we as a family we are here to help, love and support him all the way through his life.  I will stop here as I still have more but hey we have time.

In Part 3 I will explain about Samuel's speech and language difficulties, and the difficulties he faces with communication and understanding; the ups and downs that I have with Samuel and his obsessive behaviour that can, at times, drive us up the wall (except the last time Karen told Samuel he was driving her up the wall, he replied with a simple "but I can't drive mummy").

Please keep supporting me by reading about this amazing little fella.  Thanks

Samuel and Me - Part 1

Samuel is my step-son, he is 9 years old and he has a disability called 22q11 deletion syndrome.

This to you and me means that Samuel is missing a tiny piece of Chromosome 22.  Just by this tiny piece missing the list of health and learning problems is massive.  22q11 is the 2nd most common chromosome syndrome after Downs Syndrome, but unlike Downs Syndrome no two children with 22q11 have the same symptoms.

Here are just some of the problems Samuel has; Sub-mucous cleft palate, as to which he has had two operations; speech and language difficulties; short stature; poor muscle tone; he has a few tiny different facial features to you or me such as slightly more than normal sticky out ears and almond shaped eyes; Samuel is also behind with his education and although he is now in Year 5 his learning capabilities are I would say anything between Year 1 and 2 equivalent; Samuel has behavioural problems and this can range from simply not listening all the way up to showing violence so both ends of the spectrum; Samuel also wets the bed and this is due to Samuel's brain being unable like me or you to switch on the I need a wee button.  On top of this he is now extremely difficult to settle to sleep and often awake until 10-11pm, but once asleep would sleep through a bomb blast so this does not help.

So there is just a small starter to what this remarkable little man has to deal with on a daily basis.  Now I am going to share with you my story of my role as a step-dad to Samuel, a young boy with a disability just getting by day by day.  This is my post on how truly difficult at times it can be and how we struggle every day with what Samuel throws at us as a family.  Also with me being Samuel's step-dad.  No two days are the same with Samuel, or me come to that.  I am not ashamed to admit I so often fall into the all to familiar trap like so many people and when Samuel does something wrong my first instinct is to bawl and yell and go mad at him just as if he was a normal 9 year old.  My reason being unless you know Samuel you could be mistaken for looking at him and thinking he looked normal.  Well most of Samuel's problems are in his engine room, his Brain.  He operates in a totally different way to you and me.

So I shall take you back to the start and share with you my ups and downs of life with Samuel.  I will be blogging in several parts because I find this heart wrenching.  I will be truthful and hopefully just give an eye opener and a small bit of help to any other step parents out there, be it of a child with a disability or a child with none.

When I was in the early stages of talking to my now wife, Karen, one thing she asked of me was to take a small read on 22q11 as she informed me her son had this disability.  Well as you know so many people struggle at the thought of having somebody elses child/children in their lives let alone a child with a disability and I feel everybody operates on a different level.  My first thought was yes of course I am going to Google and have a read on this condition as I had to admit I had never heard of it (now I'm nearly as expert as Karen).  Well what a read and it seemed I was quite natural at taking quite a lot of knowledge on board, and informed Karen that I had read up on 22q11.  She was truly touched that I had taken time out to even read up on this.  Anyway things progressed and we had a first date (previous post) in our lovely petrol station, and following that Karen gave me the thumbs up and we arranged a second date.

It was Karen's weekend with Samuel (he has every other one with his dad) and I said this was fine.  So I turned up on the Saturday morning to pick up Karen and Samuel (the borrower).  I was bricking it and I have no disability, so just what was going through Samuel's mind I will never know.  Anyway, when Samuel said hello to me it quickly became apparent that Samuel, considering he was 5 years old, was very difficult to understand because of his speech difficulties and I realised I was going to have to quickly tune into him.  Now the worst thing in the world you can do is poo poo a child or adult with speech problems by just nodding your head and saying yes to anything, it is so much better asking a few times until you understand and it also helps to tune in to what is being said.  So, our first date with Samuel in tow was a trip to Poole Park where there is a play area call Gus Gorillas.  We stayed there a while and let Samuel gallop about for a bit whilst we had a hot chocolate.  We then headed off to a Harvester restaurant in Bournemouth and this is where I had my first insight into Samuel's behaviour.

Karen had brought along some toy soldiers to keep Samuel out of mischief.  We had a lovely meal and had asked for the bill.  We had decided to go halves and as Karen got her purse out Samuel snatched the money and started dashing about, close to us but not close enough to catch (slippery little eel), after managing to finally taser Samuel and ground him we paid and left.  Now this was just a tiny insight and start to my chapter in life with Samuel there is so much more to come but this will do as a start so please read and hopefully I can give you an insight into mine and Samuel's life together.  What you have to realise is that Samuel, just to get by each day, has to put in a months worth of effort, so please come back and read part 2.