Oh you all ask why is Sonia going to talk about a load of sexy blokes dancing in a film.  Actually I’m not but hey it’s a great way to get your attention so don’t leave me now.

I actually want to discuss magic moments, we have all had them I’m sure, however the other weekend for me was amazing.  The weather down here in Brighton was truly glorious and worthy of getting a t-shirt on and sitting in the sun.

My mad idea was to have a BBQ on the beach, my husband Dave gave me that look that said are you billy bonkers, but yes I was most definitely up for doing this.

So why did Dave give me that look?  Well for anyone who reads my blog (thank you) you will know that I can never tell what mood my youngest will be in when he arrives home on a Friday, and once I do I will then know what we can and can’t do during the weekend.  Jack arrived home happy – yay so my plan to have the BBQ just had to be worked out and how we were all going to get to the beach with chairs, food, BBQ pit, blankets, dogs etc.

I told the boys what we were going to do, Jared was a little concerned but I reassured him that he would go in Dave’s car whilst Jack and I would go in mine.  Dave took everything in his car and Jack and I had the important things – Sweep, Hello magazine, coke, crisps and a towel to sit on.

Jared is a thoughtful, kind man who helped Dave with the ‘stuff’ that needed to be on the beach and I settled Jack and Sweep onto his special towel approximately 4 metres from me to give him his space.  Jack was so chilled, and more exciting for him a group of girls sat a little way from him and kept giving him a little wave – and he waved back!

The BBQ was a success and I even got a hug from Jack along with a kiss, no anxious noises came from him, and he was happy to chill out.

The afternoon cost very little and all of us had a smile on our faces, the black storm cloud that has been over me for some time has turned into a small shower and seeing Jared and Jack in a happy place just made doing this all so worthwhile.  Thanks Dave for all the carrying and humping xx

So going back to Magic Mike, the gorgeous men didn’t turn up on the beach but Jared did have his Magic Mic which he takes everywhere with him and gives us great commentary on everything going on around us via the ‘magic mic’

In another life my sons would probably have spent the day out with their mates, up the pub, maybe on the beach with girls, certainly on their mobile phones but last weekend I got to spend it with them and it was a magical afternoon.

And you realise just a glimpse of them

Awakens how you feel

It takes you back to those moments

That time can never steal

Edwina Reizer

 

A time in some of our lives when we feel that hole is pulling you in and dragging you under, which is what is happening to me right now.

Why?

A few months ago I was made redundant, it’s not a nice thing to go through as I had loved my job and the people I worked with.  I suppose it was expected as we were told back in November last year that we would be going into administration, but when it finally happened it was quick and brutal.

Your self-worth diminishes overnight and you start asking questions about yourself.

Since the beginning of April I have applied for many jobs, to-date on my spreadsheet I have over 70 job applications that I have sent, some via recruitment agencies, some direct to the company themselves and out of all those applications I have had only five interviews and seven rejection emails, some back within the hour!  I have even had telephone interviews with the person on the other end of the phone saying how wonderful I am and the right calibre for the role on offer, only never to hear from them again.

So I started to explore why I was getting so few interviews and asked a friend who is a HR Director to critique my CV, her words – she thought it was fab and don’t change it…. Some good news then so what is wrong with me?

I believe Ageism is alive and kicking, actually hob nail booting, and when prospective employers/recruitment firms review my CV I think they can work out what age bracket I lie in.

Ageism definition – prejudice or discrimination on the grounds of a person’s age

It can’t be me, can it?

Do I have horns?  Am I not wearing the right clothes?  Am I the wrong sex, gender, colour?  These questions go through my head daily along with feeling worthless, and believe me I really do feel worthless.

I have great skills set, but no one wants me.

I usually hide my feelings and emotions quite tight inside of me not really sharing how I am feeling because I need to be strong when looking after my boys.  Jack has a sixth sense how I am feeling and this can affect him emotionally and whether he starts to feel anxious so keeping ‘me’ under control is extremely important when the boys are home.

However it does not stop me going into our bathroom and screaming into a towel so no one can hear me and having a good cry then clearing up my face and putting that smile back on.

I have tried to remain positive but it is just not happening, the black hole just seems to be getting bigger and I am sinking even further into it.

 

I met my first husband when I was 14 and he was 17 and I loved him almost from that first date.  He was working and I was still at school but we met up most evenings and went out on the weekend.  I was not your average 14 year old having to grow up pretty quickly due to the unconventional home life I had.

We were always breaking up due to my very jealous nature and him wanting to go out with other girls but we survived all of that and when I was 18 we got engaged much to his parent’s displeasure.  Just before my 19^th birthday we got married, no I wasn’t pregnant it just seemed the right thing to do as we loved each other and this was the next step in our relationship.

I had our first son Daniel when I was 21, and thinking back to this time I was still growing up and really did not know the first thing about having a baby.  I remember the husband asking me why I was feeding Daniel when it seemed to him I had only fed him a couple of hours previously, I then had to explain that this is what you did and that feeding on demand could mean every two hours throughout the day and night.  We were both so naive then.

He didn’t change nappies, he didn’t feed the baby, and he didn’t get up in the night to do any of the feeds either.

Daniel was the love of all his grandparents as he was the firstborn in our family, and even though he cried a lot and was a really ‘angry’ baby he was our little boy.

Alexandra came along two years later and sadly born with cerebral palsy, this was an extremely emotional time for us all and very difficult for the husband as we did not have our ‘perfect’ daughter.  Those 10 months that we had Alexandra in our lives was extremely challenging, juggling a two year old son and a baby that demanded constant attention both day and night did put a strain on our relationship but we somehow coped and managed.  When Alexandra died at 10 months we immediately became closer again and talked of trying for another child.

Elliot did not arrive until another two years had passed and this was with the help of the fertility drug Clomid. https://www.babycentre.co.uk/a6186/clomifene-citrate-clomifene-clomid-fertility-drug

I took the drug because I was not ovulating after losing Alexandra and the doctor felt a new baby in my life would help me come to terms with losing my little girl.

Elliot put a smile on all our faces, he was bright, naughty, cheerful, cheeky, and always pushing boundaries.  This time in our life was probably our happiest, we had a lovely home, both of us had good jobs and life was good.

Then Jared was born.

As I have said in my previous blogs Jared was quite a sickly baby and at 5 months caught a virus and he nearly died, thankfully he survived this awful time.  However it was clear that he had mobility and language problems and once again managing three boys, two with educational and mobility issues put a strain on our marriage.

When I discovered I was pregnant again when Jared was just 13 months old, the husband was shocked, actually so was I!  His first question to me was what car we would get….. he was in the motor trade and clearly did not want to drive a people carrier.  He also felt that we did not need another child in our lives.

But here’s the thing, we would never have known we had Fragile X Syndrome if Jack had not been born.

So the downward spiral of our marriage breaking up began and we eventually separated, and initial difficulties with the boys getting to see him were incredibly hard, working through anger on both sides of the breakup, and money – why is this always an issue?  We are now good friends.

I never wanted another man in my life as I had my four boys, a good job, a house and managed to do all the decorating and maintaining the house and then………

I met the second (the present husband as I like to call him TPH) through business, meeting him to discuss opportunities within the company he worked for, we often met for lunch.  He was a nice bloke, didn’t really light my fire and I was not looking for a relationship.

However…….

We started dating and after about 6 months I introduced him to the boys.

One evening he came over to take me out, and as I was not quite ready left him with the boys in the sitting room.  Jack was still in nappies (he was in nappies until he was 12) and I could smell him from upstairs that he needed changing.  I came downstairs to find TPH changing Jack’s nappy and of course I was mortified as changing a nappy on a boy who is 10 is nothing like changing a nappy on a baby.  He told me not to worry as he knew what he was doing.

I fell in love this night.

TPH has played a major part in the boy’s lives, watching them grow into men, supporting me through the many awful times I have had coping with seizures, mental breakdown, and anxiety attacks, he has always been there for me and my boys.  I am not saying it’s been a bed of roses all the time, god we have had some major upsets over the years but we have pulled together and got through those challenging times.

TPH had an operation in January of this year and unfortunately got sepsis and was extremely poorly.  The first husband called me to find out how he was and this meant so much to me and TPH.

He has also told TPH that he is grateful that TPH has been in the boy’s lives and he knows how much he has done for them over the years and still does.

When we were diagnosed with Fragile X Syndrome I so wanted it to be the husband who was the carrier, but I am glad it was me as the pain of knowing probably would have killed him.  Women are more resilient, we learn to cope albeit hiding our sadness and the awful ache we feel in our heart from those that do not understand and managing to still put one foot in front of the other.

Buddha says

A family is a place where minds come in contact with one another.  If these minds love one another the home will be as beautiful as a flower garden. But if these minds get out of harmony with one another it is like a storm that plays havoc with the garden.

To understand everything is to forgive everything

So thank you to both husbands, for giving me my children, for giving me love and for being in my life.

“A lack of knowledge or information”

Ignorance is bliss or so they say, however Jack can read body language and knows when someone is staring, looking, making a face or a comment about him.  His reaction to this is to often hand clap in that persons face, not good and can be quite frightening to that person, but do I have sympathy?  No I don’t.  Watching adults give my son a ‘wide berth’ or worse grabbing their children so they are not near him is sad and hurtful and from my point of view disgusting behaviour.

As a nation we are so judgemental, whether it’s a snide comment about someone’s weight, or similar, but disabled children and adults with physical and learning disabilities are the brunt of abuse from a lot of ignorant people including children.

WHY IS THIS?

I understand that as a parent with children with disabilities I have more patience and tolerance, I also like to think I know not to talk to a child or  an adult as if they are stupid, but to communicate clearly and sometimes slowly so their brain can digest our conversation.

Is this a skill learnt through my own children, would I be ignorant if my life was different?

Seeing this grown man on a beach at first glance he just looks incredibly handsome, but within seconds you will see he is talking to his teddy Sweep, giving him love and sharing his picnic and Hello magazine with him.  People around him continue to stare, with no understanding that this affects his happiness and his anxieties kick in.

Why don’t people engage with me?  I would love someone to make conversation and ask me about Jack, but no one ever does.

Are we really this ignorant that we cannot see he is just having a lovely time chilling on the beach?  Are you really scared of this young man?

Did you know there are over 11 million people registered as disabled in the UK.

Nearly 40% of people believe the disabled are a social burden.

More than 60% of people say they avoid the disabled because they do not know how to behave around them.

Each day in the UK, 180 disability hate crimes are reported – this is shocking.

So my wish….. let’s start being more tolerant…… the ability or willingness to tolerate the existence of opinions or behaviour that one dislikes or disagrees with. 

Maybe we will then have more people accepting that we are different, we are not all the same and we can actually live in harmony with each other.

In the words of Christina Aguilera

You are beautiful
No matter what they say
Words can’t bring you down
Oh no
You are beautiful
In every single way
Yes words can’t bring you down
Oh no
So don’t you bring me down today

And looks and stares should not bring you down either!

@Christina Aguilera

Disability figures @ http://www.disabilitysport.org.uk

@Hello

I know as a parent of a child with disabilities we all struggle at times with guilt, envy and loss.  That feeling that comes over you and engulfs you completely, and then you silently cry because your child will never be what you thought they were going to be, they are different.

Me, I am usually in the bathroom doing this as I don’t really ever share how I am feeling, so today, here goes.

When the boys came home the other weekend I was feeling particularly low, and Jack seemed to be a little anxious which heightens my own anxiety levels.  My boys mean the world to me and when they are home on a weekend I want to do as much as I can with them, however this can prove difficult as Jack will not get into a car with anyone else but me, and this then restricts what we can do as a family.

I am constantly asking Jack if he would like to go out, his usual response is no, then yes, however he changes his mind constantly as he seems to process what we will have to do to enable him to get out and then his anxiety kicks in.  During the course of the weekend we managed a short car journey to the beach, he didn’t want to walk there, we spent at least 10 minutes in the tunnel with the lets go, lets not go scenario, and then finally we mooched around on the beach for about 30 minutes.

So now I am setting the scene, Jack is nearly 6ft tall and broad, carrying as always his teddy Sweep so to others he probably looks a little strange, to me of course he is just Jack.

Do you know how many people stare at him?

Do you know how many parents hold onto their children when he is around?

Do you know how I bloody well feel when this happens? 

I ache for the loss that my sons will never marry, will never work and never take me up the pub for a glass of wine.

I cry because Jack cannot tell me how he is feeling, I cry because I cannot give Jared my time as much as Jack, and I cry because Dan would like to be like his brother Elliot but he never will be.

At times I feel so alone, and carrying this guilt around is really not good for me, but I passed on Fragile X Syndrome to my sons without knowing and now they struggle with their daily lives.  Yes they are supported by wonderful care teams but truthfully what I really want is four strapping sons to come home, take the piss out of their Mum, enjoy a big cooked Sunday lunch and tell me about their lives……. Sadly this is never going to happen.

So yes I am envious of my family and friends, I grieve for the boys they should have been but will never be, and scared for what their future holds.

It was Learning Disability Week from the 18^th – 24^th June, so it would be wonderful if more people could accept disabled children and adults into our society without judgement because in mine and my boys world it would make being here a whole lot nicer.

 

I was working full time when the boys were growing up so during half term I had a carer supporting Jack and Jared, ensuring that they had fun at home during the week and quality time with me during the weekend.

I was working just outside Oxford (about 50 miles from home) when I received a call to say that Jack had disappeared from our home.  I went into complete meltdown as Jack was non-verbal with no sense of danger, so panic levels were at their highest.  My boss decided he would take me home as he felt that I was not in a fit state to drive so we got into his car and headed home.  All the while I was speaking to the carers, the police and my husband who worked locally to where we live.

There was no sign of him……..

As I raced through my front door I was given the news that not only had he disappeared but he had taken his low slung three wheel bike with him along with his teddy Sweep, and had no shoes on!

The police had been given instructions on all the places Jack liked to go to, the local park, the train station and canal – his ultimate favourite place which is the Basingstoke canal in Byfleet where the M25 motorway is situated above and you can hear the constant thudding of cars as they drive above your head.  Jack loved the thud, thud noise and the peace of being by the water.

We finally received a call from the police two hours later saying they had found Jack and yes he was by the canal.  It took David two minutes to get to there, and then watched two policemen speaking to Jack as if he could understand everything they were saying…… er no he needs clear precise instruction.  David reminded the policemen that Jack has FXS and is also Autistic and Jack would not understand the way they were speaking to him.  We put his shoes on and walked him home, thankfully we did not lose Sweep and Jack had the biggest grin on his face, clearly having loved his adventure…… oh and the bike was now missing.

And then he only bloody escaped again!

Three weeks later he again got out of the house and this time we received a call from the police to say a workman had found him by the canal lock and knew that Jack was disabled as he had a child similar to Jack.  Once again on this adventure he had taken his teddy Sweep, and thankfully this time he did have his shoes on.

The police reported us to social services and Jacks social worker – a wonderful woman, Linda came to see us.  Linda understood us as a family, she had seen my tears, anger, frustration and depression through the years so knew we were trying to keep Jack safe but Jack clearly now had a taste for the big wide world.

We secured the house like Fort Knox and also had electronic gates put in so that he could not just walk out, I am not sure he was happy with this new system but we knew it would keep him safe.

The bike turned up two weeks later.

When I remember this time it reminds me that he was happier then, he wasn’t afraid of anything and I actually think he just wanted to be like any other 15 year old, to be able to go out on his own.

Sadly this will never happen, he will always require support at home and in the community so a BIG THANKYOU to all the people that care, support and work with Jack and of course the care team that support Dan and Jared too.

From the words of Forest Gump – My Momma says life is like a box of chocolates, you never know what you’re gonna get – I certainly didn’t!

That ache in your heart, which feels like it will burst.

Once it’s in your soul it is so beautiful and strong that no one can take away that feeling.

It can light your way through life and you never give up even when things get tough.

Making a sacrifice for them is no struggle if you know it will make everything better.

You are able to say I love you and know deep down in your heart of hearts that they know how you feel.

With love you are strong enough to go through anything you are faced with and it is all you will ever need.

If the world stops spinning or if the sun never shines again you will have that love. Always!

Bringing the boys up living with Fragile X Syndrome www.fragilex.org.uk  Autism www.autism.org.uk  Epilepsy www.epilepsysociety.org.uk and mental health problems www.mind.org.uk has at times been extremely challenging because none of these disabilities go away and at times I admit I have struggled myself, mentally and emotionally, screaming and crying to take all this shit away but I am still here and even though my anxieties heighten when the boys are home I cope and manage.

So when I celebrated my birthday in November my son Elliot (the one that does not have FXS or any other disability) sent me a pledge voucher with a promise to give me an entire weekend of magic, enchantment and a truly wonderful time with Elliot Withers…… only El, could write this!

During the bank holiday weekend we did indeed have our weekend of ‘Mummy’ time and it was truly magical driving to Warner Bros. www.wbstudiotour.co.uk where the Harry Potter studios and I was not disappointed.   I have been a huge fan of the Harry Potter stories since they were first written by www.jkrowling.com, a children’s book that also became an escape for adults, and I have loved every one of these books written where I could grab some me time even just for a few minutes, so to see the film studios and share with Elliot who also loves these books was fantastic.

Spending time with Elliot is very precious as he is now married to the lovely Milly, and also has an extremely busy job and more importantly lives two hours from where we live, so giving up his time to spend it with me is very precious.

On the Saturday we decided to hit the shops in Brighton, for anyone who has not visited it’s an eclectic mix of quirky/weird/beautiful shops and in the lanes Elliot was in his element spending some time in Dave’s comic book shop and the local record store where he purchased Metallica on vinyl – oh the simple things in life that make us all so happy.

The highlight for me was going into our local photo booth shop www.photomatic.company/ where we spent some time having our photos taken just being bloody silly, laughing till I cried and just having fun, this very simple idea just gave me so much pleasure.

Elliot fulfilled the final part of the pledge by cooking on the BBQ!

I feel blessed that I have been given a son who is not only bloody gorgeous (clearly takes after his mum) but is also kind, caring, intelligent and gives me as much support as possible, who thankfully shares his love, unconditionally with us all.

Whilst Dan, Jared and Jack struggle showing their emotions they all show me their love in certain ways, Dan who gives me hugs when he knows I am feeling low even though he hates body contact, and Jared and Jack when giving me a smile that can light up London, I know they are happy and I feel adored.

Don’t be sad for what you lost, smile for what you have xx

 

 

From the first moment we got our diagnosis, I have hated it.

It’s always with you.

As a family we did not know we had the disability until our fifth child Jack was born, because Daniel and Jared had both had previous misdiagnosis.

Without Jack we probably would still be blissfully unaware that our family carry this gene and three of my sons have the full mutation.

The disability can be passed on by both men and women.

Women have a 50% chance of passing on the defective gene to their children, and for my sons Dan, Jared and Jack unfortunately they got the short straw and I passed my fractured X chromosome on to them instead of the bloody good one!

Not knowing about the disability I really wanted it to be my husband who passed it on, instead it was me….. shit and bollocks.

So here is a little more detail…..

Fragile X is caused by a mutation in a single gene.  In people with Fragile X, a defect (a full mutation) turns the gene off. Like a defective factory (I am the defective baby maker), it cannot manufacture the protein that it normally makes.

Fragile X Syndrome is a common rare disease and Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups (source CDC). About 1 in 259 women carry fragile X (me included) and could pass it to their children, (I certainly did that). About 1 in 800 men carry Fragile X; their daughters will also be carriers.

Fragile X syndrome is also the #1 inherited cause of intellectual disabilities and the most common known cause of autism worldwide. Most people with Fragile X are not yet diagnosed – unbelievable but so very true.  Did you know that health professionals including GP’s, nurses and even surgeons have never heard of Fragile X Syndrome and this is the 21^st century!

Yes Fragile X is inherited, look at me.   I inherited it from my mum who is a carrier, and my mum inherited it from her father.  Thankfully I do have one son Elliot who does not have the disability and is not a carrier either, so thank you Buddha.

Carrier men will pass the premutation to all their daughters but none of their sons. These daughters are carriers but they do not have Fragile X syndrome, and the Fragile X premutation can be passed silently down through generations in a family before a child is born with the syndrome.

So if you want the more complicated bit about genes and inheritance carry on reading……..

Each cell in the body contains forty-six (twenty-three pairs of) chromosomes. These chromosomes consist of genetic material (DNA) necessary for the production of proteins which lead to growth, development and physical and intellectual characteristics. The first twenty-two pairs of chromosomes are the same in males and females. The remaining two chromosomes, X and Y, determine whether a person is male or female. Males have only one X chromosome which is inherited from the mother. They receive a Y chromosome from the father. Females inherit two X chromosomes, one from each parent.

So how does it affect children and adults – there are a wide range of characteristics associated with fragile X, but an individual person may only experience some of these. Learning disabilities occur in almost all boys with fragile X, to differing degrees.  Some boys have severe learning disabilities, like my Jack, and some are only mildly affected like my Dan.  Girls usually have milder learning disabilities than boys, but this is not always the case, and some girls with Fragile X Syndrome may be clinically unaffected because their good X chromosome will overcome the bad leading to showing no symptoms at all.

As well as learning disabilities, common behavioural features include short attention span, distractibility, impulsiveness, restlessness, over activity and sensory problems. Girls with or without learning disabilities may show concentration problems and social, emotional and communication difficulties related to extreme shyness and anxiety in social situations.

Many children and adults show autistic like features, including: avoiding eye contact, anxiety in social situations, insistence on familiar routines and hand flapping or hand biting.  Jack has bitten his hand his whole life, and has a permanent large callus on his hand.  A substantial minority of individuals with fragile X will show greater problems relating to others and may receive a dual-diagnosis of autism with speech and language delay and continuing speech and communication problems.  As I have said on my previous page about Jack, he has limited communication and I believe this has affected him greatly as not being able to communicate frustrates the hell out of him and leads to him being more anxious.  Some children and adults like my Jared also develop epilepsy.

There are some physical features associated with fragile X, including a long narrow face with prominent jaw bones and ears. However, these are rarely obvious in young children and the lack of distinguishing features is one of the reasons that diagnosis can be delayed. They say you cannot tell that someone has fragile X just based upon their appearance or behaviour, although I have been to many conferences where a crèche has been full of FX children and to me they all looked related in some way!  However for an actual diagnosis the only way to tell if someone has Fragile X Syndrome is to do a genetic test.

So are there any good bits????

Of course there bloody well is! 

Strengths associated with fragile X include good imitation skills – Jared can copy most UK accents, and when we took him to Scotland for a visit he spoke in a Scottish accent for the duration of our stay, eek!   (He loves all things Scottish and when he turned 18 had a Scottish themed party).  They also have incredible long term memories and a discussion with Dan can bring up all sorts of past moments.   People are also often described as having likable personalities and I have never met anyone yet who does not fall in love with Jared, his smile can light up London and his quotes from only Fools and Horses are legendary and he does like a bit of dressing up too.   Even Jack can be cheeky, calling Mum so that I go into his room then laughing because he actually doesn’t want anything just thinks this is funny.

The technical bits on this page have been retyped with personal bits added by me, but if you want to know even more about Fragile X Syndrome please do contact the society on the links below.

www.fragilex.org.uk

www.fraxa.org

 

 

 

 

 

Jared and Jack always come home every second or third weekend arriving on a Friday then leaving late Sunday afternoon, depending on their calendar and ours and arrive home via their carers.  I love having them both home although to be honest I always feel a little anxious when Jack arrives as he will show you pretty quickly if he is in a good place or not.

Jared always walks in and starts his banter with Dave…..awight Dave, usually about the football and whether Spurs or Chelsea have won their last game.  This weekend Spurs play Chelsea so Jared says Dave will be crying buckets, although I am not sure this will be the result he so wants!  Jared then puts on his TV and will download a load of Only Fools and Horses programmes so that he can watch these non stop during the weekend.  He will also have his iPad running, often watching the same film clip on both his TV & his pad, oh and music playing on his radio too.

Jack usually rocks up a short time later and he first grabs the iPad demanding Motor Racing – one of his few words and once on the YouTube channel will then flick through all the films and clips he loves to watch.  Next he puts on his pyjama bottoms, he does like to strip naked usually in front of his bedroom window which is on the ground floor….oops, and then the TV also goes on and the first film to watch will be Dumbo.  This will be flicked back and forwards in 4 second bites via his remote and I think to date he has worn out over 20 TV and DVD players, at 27 he still loves watching the same clips over and over.   We have one other iPad and also a kindle so when the battery fails on one we are ready with another, this helps to keep him happy and I don’t know how we managed before these wonderful devices came along.

Jack also has an obsession with food, any food, and will raid the fridge if not monitored, he loves diet coke and salt and vinegar crisps so I always make sure that he has both when he arrives home.

When I cook, I have to cut up Jacks dinner as he cannot use a knife and fork preferring to use a spoon instead, I think this is so he can get as much in his mouth as possible.  Jared can use a knife and fork but we have to ensure that he has nothing green on his plate.  This obsession started about 18 months ago, previously he loved broccoli, sprouts, cabbage etc, but now will only eat vegetables that are not green and this obsession also extends to his clothes, books, and magazines.  Sometimes I forget and put a green place mat down for his meal, I then get Mum what have you done!!!!

Its usually a very chilled out weekend and I try to get Jack down on the beach every day, this has been the best thing since moving to the coast, as Jack adores the beach, and delights in walking with our dogs, usually Morgan holding his lead with his teddy Sweep.

Sadly some people just do not know how to be around disabled adults, only the other weekend a woman refused to walk past Jack on the beach saying to her friend “I am not going near that man, I don’t know what he will do to me or my dog”  and we have had similar responses from other people too.   I do understand that seeing a man nearly 6ft tall making noises and holding his teddy can be pretty ‘strange’ however why shouldn’t Jack be able to enjoy the beach like everyone else?  Family and friends know that I can get right in peoples faces explaining Jack has a disability and he has every right to be on the beach just as they have, however sadly Jack can read peoples body language and this often makes him very vocal making guttural sounds that can be very loud and becoming extremely anxious and will often go up to the person complaining by clapping in their face…… not good, but better than a thump.  Jack also says ‘cuss’ and when he uses this word we know he is swearing whether he is saying this to the people who have a problem with him or even to me I know he is actually saying Fuck Off!!

On Saturday afternoon, Jared takes great delight in giving us all the football scores – our very own Sky sports pundit and will rib Dave on how Spurs are doing.  Jared loves all sport whether its the cricket, boxing or WWE he will be watching it and giving us a constant update on whats going on.

The boys both need me to bath and shave them each morning and I have a great tip for Mums having to do this for their disabled sons.  When shaving them get a shaving brush and lather up the soap as this lifts the bristles and makes shaving so much easier on their faces and quicker too (thanks Dave for this great tip).  Once out of the bath its hand and toe nails trimming time.  Drugs follow this routine, Jack with his medication for depression and Jared’s drugs for his epilepsy.  Thankfully I no longer have to cut the boys hair as both have now managed to go to the barbers – always first thing in the morning when its quiet ensuring they do not have to wait….. queuing causes great anxieties.

The days seem to fly by as Jack constantly requires his iPad to be put back on YouTube – the problem is he sees adverts and flicks onto them but has not worked out how to get it back to the film clip he is watching as he is too impatient to watch me show him.  He also needs help changing his DVD which can be up to 20 times throughout the day and of course the endless drinks of juice.

Bed time is usually around 10pm, Jared is usually exhausted by then as the drugs he is on can make him rather sleepy.  Jack on the other hand will go to bed but not sleep until at least an hour later and we can often hear Lego flying around the room then giggling!  This is my favourite time of the day, not because they are finally going to bed but I have a routine with Jack that I have been doing since he was a toddler.  He does not like to be touched, unless he touches you, but when I put him to bed I pull the duvet tight across him then smother him in kisses, he laughs and giggles and this makes me so very happy.

On Sunday their Dad Roger arrives spending time with Jared and Jack and then whisks Jared off for lunch then taking him back to his house in Salfords, Reigate.  Unfortunately Jack will not get in a car with anyone but me since the accident in France, so Jack gets picked up by his care team late afternoon.

So what do I miss from my beautiful boys?

Never being asked to lend them £20 quid

Can I replace their mobile phone because they put the last one down the toilet

Mum, meet my new girlfriend

God I’m hungover, can you do me a bacon butty?

Can I borrow your car?

Do you want another glass of wine Mum?

I’ve got a new job

Mum, I love you

 

 

 

 

 

 

 

 

Hello and thank you for reading me, this is a work in progress because I keep remembering things so will be adding along the way.  I hope its not too long as I do like to prattle on sometimes and I hope you don’t get bored either.

This is my blog about my boys and us as a family.  Yes I am sure there are loads of blogs out there all writing about their children, however mine is a little different as I am a mum to four sons and three of them have Fragile X Syndrome http://www.fragilex.org.uk/ two are also on the Autistic Spectrum and my ‘baby’ is also severely Autistic http://www.autism.org.uk/ and has mental health problems. http://www.mind.org.uk

 

So this is our journey………