Disability Diaries : The Spine

Back in some part of 2014, my son - J1 - who suffers with quadriplegic cerebral palsy, was referred to a spine specialist with suspected scoliosis.  This completely threw me through a loop and I seriously went into melt down.  After the first appointment, when we were given a very thorough and clear talk about why he had been referred and what they were looking for, what could potentially happen and the probable timescale of this, I did what any self-respecting special needs mother does.  Went home, had a little cry about the unfairness of it all and then pulled myself together by processing the information.

A special needs mother doesn't get long to linger and wallow in self pity - there is too much to do.

For the last two years we have been back and forth for check up's with the spine surgeon and true to what was predicted in the first appointment, they have been just that, monitoring appointments.  He has X-Rays taken (never easy when a child can not sit up unaided), the specialist looks at them on the computer screen, feels down his back, spine and ribs, looks at him sitting in the chair from all angles, then addresses us, the parents.

"It's definitely getting worse.  Would you agree?"  Begrudgingly, we do.  At this point he usually says it's still not imminent for surgery and he will see us in six months time.  We leave the building and breath a huge sigh of relief, while the only thing J1 is concerned with is whether he can have a sneaky McDonalds for lunch.  But we do understand it is only a short term reprieve.  Just another chance to come up to the surface of the water and grab another mouthful of air.

Only, last time the Specialist diverted from script.  This time he 'hmm'd' more than normal, looked at the X-Rays more frequently and for longer.  Checked J1's age - twice.  As he ran his hand up and down the spine for a third time, he said "I think it's time for J1 to go on the surgery list.  Don't you?" 

It was like the air had been sucked out of the room and I what I wanted to say very petulantly was "No, actually, I don't think it's time, you are not going anywhere near my son's beautiful spine.' and knock his hand away. 

But I didn't, because I am a grown up and after two years of processing the information I have finally and rather ungraciously accepted the fact that my son is going to need spine surgery. 

Nevertheless, the specialist ploughed on warning us there is a fairly long wait list (about a year) and lots of appointments and check up's to go through at the hospital before it would happen.  Plus he would be seeing us again for another check up in six months time.

Six months time is now here.  The appointment is in two weeks.  Sleep is harder to come by all of a sudden, it feels like our grace period is coming to an end.  J1 is completely oblivious to the enormity of it and I am torn if the best thing to do would be try and tell him about it, to explain or not.  Sometimes I wonder if he could comprehend it and other times I think, not a chance.  He is such a worrier.  He can fret about something as small as a change in school bus pick up time for a month before it happens.  Would I be crueller by putting this into his mind, or keeping him in the dark?  How can I expect a 13 year old with delayed learning to process it when I am still not sure I am ready to face it?  You see, nothing prepares you for this shit. 

As a parent of a child with special needs you have to be accommodating in who you put your trust in.  Most of the things your child will go through within their life you start off having no idea is going to happen.  When you get a diagnosis, you think you are in the know, but you aren't.  They don't warn you about the weird and wonderful consequences of what not being able to walk creates - deformed hips, collapsed ankles.  They don't tell you that because your child has no trunk control his body weight will pull the spine out of shape and crush his pelvis. 

I guess they don't because it would just be too overwhelming.  Who could cope with finding out all of that?  They let one thing come at a time so you can digest it, process it and accept it.  They give you that chance to get to the surface for air. 

I guess at times like these, with the spine surgery, there is just one thing to do.  Prepare ourselves for it.  We are going to have to take a bloody great oxygen tank down with us and make it last.  Be strong, get through it, be the voice shouting in the corner for our child - because as a parent of a child with severe physical disabilities and special needs it's what we have to do.  There is no other option.

But sometimes, you do need that good cry first. 

   

The Disability Diaries : Admitting Defeat?

They say that asking for help is the hardest thing to do.  Is it?  I don't think so, in respect of disability I sometimes feel that actually getting the help is sticking point.  It appears, that time after time, you can ask for help but unless you have the staying power of an ultra-marathon runner, the skin thickness of a rhinoceros and the forcefulness of a stealth bomber, you are screwed.

 

We are a family that has always tried to cope 'in house'.  We have asked for nothing in respect of respite in the 10 years that our son has needed our constant care due to his severity of his physical disabilities courtesy of his condition of Cerebral Palsy.

 

Our mind-set has always been, he is our son and to care for him is our responsibility.  As a mother it is hard to believe that anyone other than those closet to him could ever care for him with enough respect and empathy and thus it has been almost impossible to let go.  However, we had to let him start school.  And with this came the realisation that there are people out there who can care for him that he enjoys the company of as well.  And by being so over-zealous with the apron strings, maybe we are letting him miss out on other things.  Others company.  Social aspects.  Broadening his own ability to trust.

 

Understanding this is one thing.  Actually loosening those apron strings, well that is quite another.  But you know you have to do it.  You have to do it with all children eventually, but when your child doesn't quite have the capacity to understand if someone is being mean, or mistreating them and you are not sure if they would be able to tell you it is much harder. 

 

It also forces you to think about the thing that you never want to think about.  What if you wasn't here.  So more often than not, you retreat, back to how you were keeping all care 'in-house'.  With just those that you trust implicitly.

 

But what happens when your son becomes your height and body weight.  When he slips down his specialist bed and you can't get him back up, or if you try you risk damaging your back, neck, shoulders?  

 

Injury.  A carer's biggest fear for themselves.  Not for the fact of the pain or discomfort, but what it will stop you being able to do.  Caring for your child.  You need to be fit and healthy for as long as possible so that at the very least you can still be the ears and eyes for your child.  So sometimes there comes a point where it isn't your choice anymore.  You have to ask for help.

 

But when you make that call to whichever service you think you need, you are just another voice on the end of the phone, asking for help from a system that can't really afford to help everyone.  You are starting at the beginning of a very long, bureaucratic road that is a bit like a game of snakes and ladders.  Get the right person on the phone and you can leap frog to the next level.  The wrong one and down you go, back to the start.

 

We once asked for help in respect of developing J1's social skills.  For him to understand that you can go and have fun like bowling, or to a club like scouts with a friend rather than an immediate family member, to try and broaden his horizons.  It was a big step, deciding to ask for that help.  To cope with the idea that someone else would be his carer while he was out in the big wide world - even just for an hour or two.  But, I acknowledged, it would be good for him.  It took nearly two years to get refused.  Because - we were coping as a family.  They made murmurs about standard 'send him away' respite.  But that was not what we were asking for.  We were asking for much less.  But never mind that.

 

This time I asked if we could look at getting some help overnight.  J1 requires someone to be in the room with him at all times.  Therefore either myself or my husband has to sleep in the room with him.  He is with us full time now, my parents can no longer offer to look after him for nights in the week, and although we do it without thinking, will this have a detrimental effect on our relationship long term?  People repeatedly tell me that you can have an overnight carer come into the home specifically to sit with a child overnight.  They normally say this with an amazed tone that we do not already have this in place.  Like it is our fault.  But I ask them -  CAN YOU?  Really? 

 

We do not seem to be able to make this clear to anyone I have spoken on the phone.  When, of course, you eventually work out that you are speaking to the right department.  This time, I was directed to a booklet of available help - guess what that booklet offered - help a few hours a week to help with social activities such as bowling or scouts.  

 

Frustrated much.  I think so.

 

So, another week has passed.  I have done what they asked me to do.  Look at a booklet that whoever was on the phone should have known would not be able to offer a service that I need for my son.  Another week gone. 

 

Why am I starting to worry about this now?  I was never a worrier because as far as I was concerned I would always be the one to look after my child.  Ah the innocence of my twenties.  That wonderful age where you do not believe you will ever really feel older.  But as I rapidly approach my mid-30's and I can feel that back twinge or that shoulder blade pull, and I do realise that my parents are now pensioners and J1 is a big lad, the realisation can no longer be avoided.

 

We need help.  It just grates me to admit it.  

The Disability Diaries : The efficient PA

Wikipedia says this about the role of 'Personal Assistant' :

 

"...A personal assistant or personal aide (PA) is someone who assists in daily business or personal tasks... a business man / women may have a personal assistant to help with time and daily management, scheduling of meetings, correspondence, and note taking..."

 

When you are a parent of a child with special needs and/or disabilities you become a PA for your child.  Along with the normal roles of being a mother or father - care giver, cook, cleaner, entertainment provider - all the usual things we do in order to keep our children happy, clean and fed - a giant part of your life must be given over to an administrative duty you didn't know was possible or needed for someone other than a 'business man - or women'.

 

Luckily I worked in the administrative/PA field for 15 years prior to becoming a stay at home mother so it comes as second nature, but even for me, who alluded to a career in that organised and methodical manner it can be arduous. 

 

J1 is now 10 years old.  I am used to dealing with professionals and 'The System'.  I am used to the long waits, the vague promises and being passed from pillar to post to find out a yes / no answer.  Don't get me wrong usually, in the end, you get a result but to get there you have to ring, email, chase, note take, leave messages, and ping pong from one service to another in a manner that even Miranda Priestley from The Devil Wears Prada would be proud of.

 

I have days where I can not face it.  The weekly list of 'people to contact' sits staring at me and the thought of leaving another answerphone message that doesn't say 'Ring me back before I end up on your doorstep with my disabled child and you can see for yourself why I need X,Y,Z' is too much.

 

Then I will catch a glance of a photograph.  Of my little boy trying to smile from his wheelchair.  Or watch his video that he insists I take of him on my phone singing Katy Perry's 'Roar' (or whatever his favourite song of the moment is) and I realise this is my job in life.  He needs my voice.  He needs my PA skills.  He needs his mum and dad to chase these people and sit in those meetings. 

 

Then I can get into full flight mode.  One number after another is dialled, I speak brightly and politely, because honestly, we NEED these professionals on our side and as frustrated as I can sometimes feel with them, I do understand that a lot of the time their hands are tied, money is sparse and they have huge case loads.

 

We have been re-located for four months now and I am still trying to get new professions on board.  This is the fourth or fifth week of calling round child development centres, school professionals, doctors, trying to establish who I should be working with to ensure my son is getting the help he needs to live the best life he can with the hardships he endures on a daily basis.

 

He needs equipment.  He needs to see specialists.  He needs to have his abstractly growing hips and spine monitored.  He wouldn't choose to need all of those things.  I wouldn't wish it on my worst enemy but that is the hand we were dealt and it is the one we live with every day.  Any family in the same position knows that is enough to cope with.  Having the added work load of having to be as organised and on the ball as the best paid PA in the world is just something we do.

 

Files and files of notes, appointment letters, referrals, delivery notes, invoices sit in my loft.  Put away as a record of our life.  A life touched by disability.  Sometimes when I venture up there I look at it and feel proud, that it is organised and efficient.  Other times I want to kick them all over the cold space and see them flutter into oblivion screaming WHY HIM?  A reminder that this has been the way of it for the last 10 years.  Thankfully I don't have to go into the loft very often.

 

Why have I written this?  Because I have just put the phone down from this weeks phone calls and I am sitting and waiting for all the promised calls back.  I am home alone and there was no one to rant or off load onto.

 

So instead I decided to write.

The Disability Diaries (The Life of J1) : Nine

Nine years ago today I was a new Mother of a day.  Eight weeks earlier than planned.  My baby boy was in SCBU High Dependency, covered in tubes, wires and face masks.  Rather than being in the peaceful surroundings of our warm and loving home, he was surrounded by loud, bleeping machines and nurses scurrying back and forth.  A wide eyed blond women sat staring at him, with a shocked expression, for 14 hours a day.  That women was me.  His mum.

I have written, numerous times about J1's birth, the fact that he was premature and the sad day we discovered he had suffered brain damage during the last hour of being in my womb and had been left with the condition Cerebral Palsy.  I have noted on many posts how severely physically disabled the Cerebral Palsy has left him and how we all face challenges on a day to day basis that we never knew were possible before J1 came into our world.

But in this post I want to talk about J1 making it to the ninth year of his life.  How I have realised over the last couple of years in particular, as we have sadly said our goodbyes to some children who J1 started school with, who have been taken as Angels and watched others fight for their lives and beat the odds, how lucky we are to have our little boy here to celebrate. 

I do not like to dwell on the fact that although J1 has a condition rather than a degenerative disease that will progressively get worse, there are factors within that condition that could threaten his life.  The fact that he suffered with Epilepsy in his younger years.  That he can have reflux in his sleep that could result in him choking to death if we were not close enough to get to him to move him.  That due to him not moving around his bowels to not get the movement needed to clear them easily, which if ever was left to take hold could cause all sorts of problems.  That because he does not walk his bones start to develop in the wrong way, which need operations to rectify.  Big operations, that come with all sorts of risks. 

These have to all be pushed to the back of my mind to get through the day, otherwise I would be a wreck sobbing on the floor.  However, every now and again I think it is important to take stock of these things and realise that despite all of those issues, he is a happy, joyful, cheeky and on a day to day basis healthy little boy.  That he trumps all of these negative possibilities with quite a gusty 'Ave That!' without even knowing it.

It is a joy to see my, once scrawny baby, who's legs were layered in rolls of skin because he didn't have any fat - eat his breakfast, lunch and dinner better than most other nine year olds we know.  To hear him sing along with the TV, even if we have seen the same programme a million times.  To watch him now interact with other, able bodied children his age, whereas once he would fear them.  To even see him be naughty and cheeky on occasion.

So in celebration of your ninth birthday J1, we thank you for being wonderful and appreciate everything you are.

Special Awareness : I am grateful for...

Special Saturday is now hosted as and when you wish to link up to it now, rather than prompts coming on a Saturday.  Despite this, it's aim remains the same.  To raise awareness of the daily highs and lows of living with a special needs condition within your life.  Whether you are the person with special needs; the parent or carer of someone with special needs; the friend of someone with special needs or just had your life touched (and usually improved) by knowing someone with special needs.

The last prompt given by the administrators was :

I am grateful for ...

 

 

I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

I participate in a weekly blog hop called 'Reasons to be Cheerful' whereby you have the opportunity to share the things that have made you happy in the course of the week.  It is surprising what you can find - even in the crappiest of weeks.

So this is a good opportunity to do the same but on the subject of Special Needs.  Someone with no experience of having Special Needs in their life would probably wonder what on earth could make you happy about it.  So here is what I am grateful for...

* I am grateful, that my son, J1, who was born eight weeks before he should have been is here with us today.  I am grateful that we live in a day and age where science and technology was able to keep him alive in those first tentative days.  We didn't know in the first few weeks or even months that brain damage had occurred.  Everyday I wish it hadn't.  Especially knowing that it occurred in the last hour of the birth.  It's a tough pill to swallow.  We will never know what specifically caused it.  It could be one of many potential factors.  Apparently.  But if the choice was between having him with us, exactly as he is today or not at all I wouldn't change a God damn thing.

* I am grateful that we got a quick diagnosis.  Within weeks of him seeing the right consultant we had it confirmed he had the condition Quadriplegic Cerebral Palsy.  This made getting the right help for him; physiotherapy; occupational therapy; speech and language therapy; hydrotherapy easier.  I will not say easy, because nothing comes easy. But at least with an actual diagnosis, you have a hope in hell. 

 

* I am grateful that J1 can speak.  He didn't start to speak until he was five.  The most important part of this ability, apart from the wonder of here him saying 'Mum' for the first time, is that he can tell us if he is in pain and the generally where the pain is.  This is incredibly important, particularly since he has such problems with his hips. 

 

* I am grateful that despite his huge physical disabilities J1 is a very placid nature.  He does not have any behavioural problems.  Although J1 is physically demanding when it comes to caring for him as he must be hoisted whenever he needs moving; he can not sit unaided; he has to have extensive physiotherapy - he is not a challenging child.  He is very accepting of the fact that he must be hoisted; he must be tightly strapped into equipment; he must have the extensive physiotherapy.  Saying this, as I have mentioned in numerous previous posts, as he is getting older he is developing more sense of awareness of the things he can not do and this is beginning to cause a little frustration for him.  However, on the plus side of this the fact that he is developing the awareness in the first place if fantastic.  It is wonderful that he is becoming socially aware, and hope this means that he can start to join in some after school activities and gain some social independence.

 

* I am grateful for all the wonderful people I have met through J1.  I did not know that so many giving, kind, selfless people existed in the world.  I am always very wary of the fact that there are some awful, evil people in the world that pray on the vulnerable but am also now aware that there are many people out there who have the compassion to care for them as well as I can care for him.

 

* I am grateful that when fate decided that my child would have the special needs that he does, I had the character and strength to know that I would cope.  As a single mother some (brave) people asked if I would give him up for adoption.  They are not people I speak to anymore.  Anyone that would think a Mother would give her child up because they were not able-bodied, or had any kind of special need are not the sort of people that I wish to have in my armoury of friends.  I do not look at J1 and think he is my disabled son.  I look at J1 and think, he is my oldest son.    His disability isn't invisible.  It is there for the world to see, but in the world of my love for him, it doesn't exist at all.

 

If you have a post, comment, thought or anything related to Special Needs that you would like to share, link it with the Special Saturday facebook page and twitter @Specialsat #specialsaturday.

 

I am also linking this post to the Love That Max Special Needs blog hop.



We. Were. There.

I remember where I was when I got a text saying that we had won the bid to host the 2012 Summer Olympics (for the record Burger King...).    Cool, I thought.  I did not give it much more consideration than that with it being years away.

However, having been lucky enough to go to the Commonwealth Games in 2002 when they were held in Manchester, I did want to try and purchase tickets when they went on sale.  I have the most fantastic memories of our experience at the Commonwealths.  The atmosphere; the stadium; the communal areas set up with big screens; the friendliness of visitors, staff and volunteers.  Alas, like the majority of the rest of Britain, it seemed, I was not successful in a ticket bid.

As the momentum for the Olympics started to build, I watched more programmes and read more literature on this mammoth event.  The desire to attend grew.  I wanted to be part of 2012.  Then the adverts on Channel 4 started to catch my eye for the Paralympics.  Of course my interest in this was heightened more than ever being a mum to a severely disabled little boy.

I was glued to the TV for the Olympics period, but I wanted to actually be there for the Paralympics.  I was moved and inspired by the adverts alone and knew to attend the live event would be out of this world.  At the same time the whole country had been romanced by the Olympics and had started to open their eyes to the fact that it wasn't all about to come to an end.  A new wave of amazing Athletes were starting their bid to make history.

We managed to secure tickets for Wednesday 5 September 2012.  Our session was for the evening Athletics in the Stadium.  However our tickets allowed us entry into the park all day.  I wanted to make the most of it so set out an action plan for my husband and I.  It was exciting for two reasons; the first it was the Paralympics of course.  The second; it was a rare day out on our own. 

We set off with the weather beautiful and a spring in our step.  First stop was Tower Hill to get a photograph with the Bridge in the background.  We had done this when we spent a day in the London atmosphere whilst the Olympics were going on and the Olympic Rings were hanging off of it - naturally I needed a matching photo!

 

 



Next was a visit to Westfield Shopping Centre en-route to the Park entrance.  I have to say it was very enjoyable with a stop for (very reasonably priced) Nail Art

 

 





And to the top floor for lunch...

Then we strolled across the walkway, with hundreds of other excited attendees and through the 'airport style' security system.  As had been reported throughout the events all the staff and volunteers, police and armed forces were jovial and friendly.

 

 



We were then 'in' and it was a wonderful atmosphere.  We saw all the sites that have now become famous world over...

 

 

We also found this which I would love for my back garden if it is going spare...

 

 

 

There was so much to see and do in the Park the time flew by.  Before we knew it the announcements were being made that the gates for Stadium ticket holders were open.  We made our way over early which gave us good opportunity to get lots of cool photos of inside the Athletics Arena.

 

 

Our first race was a real treat, both Oscar Pistorious and Jonnie Peacock featured.  This was followed by lots of amazing finals and medal ceremonies, which all brought a tear to the eye.  The Ladies 100m for Visually Impaired athletes was a Brazilian one, two, three and their delight brought a cheer as big as if it was a British trio on the Podium.

 

We also experienced something very unusual.  The Mens 4 x 100m Relay for Visually Impaired athletes requires that the crowd is completely silent until the baton is handed over to the fourth participant.  They are relying on hearing the correct sound signals to make their race work.  Asking a crowd of 80,000 to contain their excitement for a relay race is a big task.  And it was the most surreal thing to do.  It just felt wrong, even though it was right!  The cheer after the last baton handover blew the roof off of the Stadium and made the wait worth it.

 

It was truly amazing to be part of London 2012.  The Paralympics in particular lived up to the expectation it teased with beforehand.  We really did see 'Superhumans' in action.  We really did see determination, focus and courage.  We really did see human kindness, peace and harmony.  Even if you are not a fan of sport, if you are a fan of any of those things you would have enjoyed this summer.

 

For us, as parents of a little boy with severe physical disabilities we saw the unexpected and the amazing.  We saw nothing short of miraculous achievements.  We saw disability slipping away and being replaced with sheer ability.  We saw HOPE.

 

Thank you London 2012

 

 

 

     





Dreaming of Running

Channel 4, the official broadcasters of the 2012 Paraolympic Games, are running an advert at the moment.  It asks three gentleman, all in wheelchairs what they dream about.  One says he always walks again in his dream.  I think the other says he never dreams of walking.  The third laughs and says he doesn't know what they are dreaming about but in his dream he is just surrounded by wonderful women and doesn't take any notice if he can walk or not.

This really made me smile.  Then it made me think.  I have been doing that a lot lately.  I have been in that sort of philosophical mood, which doesn't always make me seem very happy.  But it isn't that I am not happy.  It just means that I am thinking.  About everything.  About nothing.  About stuff.  Sometimes my mind just needs to do that.  Maybe that is the writer in me.

It made me wonder about what J1 dreams about.  I can ask J2 and he always answers the same thing - 'Lion ROOOOOAAAARRRRRR'.  If that is true it may account for his truly erratic sleep behaviour!  But whenever I ask J1 he pauses, says 'Errrrrrrrr', pauses again and then sets to his default question -'Where is Daddy's car?'  This means you are not going to get an answer to your question.

So I am left wondering.  I am left wondering if he dreams of walking and running.  Does he dream of running around the playground, or competing able bodied in sports day?  Does he bounce on the trampoline until he feels sick and sweaty?  Does he run along the sea front running up and down the steps to the beach until we tell him not to do it anymore?  Does he run up the steps to the cafe to buy his ice-cream? 

I have a recurring dream.  Not everyday but always the same.  J1 walks into my bedroom and asks if he can wear his football shirt for school.  As wonderful as that is, when I wake up I get the crashing reality of life.  And that is painful.  Like when people say after they have lost someone, for that first few seconds of the day when you wake up, everything is perfect.  Then your memory comes to life and reminds you of days and events past. 

No matter how many years fly by, and how much I come to terms with / adapt to life as we now know it, the actual reality of knowing my son has brain damage is still a bastard.  It makes my heart ache with the longing to be able to change it.  It must be the biggest frustration in life that you will ever encounter - someone you love suffering with something, be it a condition or illness, and no matter what you do to help, aid, alleviate you know that you can't change it or stop it.

Maybe that explains my overwhelming need to keep in control of all other aspects of my life and my complete annoyance when I feel that is not the case.  My developing attitude that you must absolutely do what you want to do, if it is something that you have any control over being able to achieve.  Some people call that positive thinking.  I call it trying to make up for what I can't change or control.  A defiance that fate won't fox me into thinking I 'can't' control what happens.

Can someone that has never walked a single step dream what it is like to do so?  I like to think so - after all I dream of flying and I certainly can't do that. 

So, run little boy.  Run and laugh.

Published in SEN Magazine

The article I wrote for SEN Magazine was published this month.  It was thrilling to see my name in print!

If you would like to read my article, the magazine just released it online.   It can be viewed here (even though they say 'daughters' diagnosis and it should be son in the link - it is correct in the magazine and online article) :

https://www.senmagazine.co.uk/articles/1020-a-mother-tells-how-she-received-her-daughter-s-cp-diagnosis-from-a-most-usual-source.html

Special Saturday : The Special Needs Part of Our Life

This weeks #Special Saturday theme is to just generally sum up what is going on in your own world this week.  This is a good time to think about this because it is the last week of J1's school year.  Just yesterday we went on a fantastic school trip to Colchester Zoo.

Colchester Zoo is very accessible for those with wheelchairs apart from a very few areas, which do have large, steep gradient hills to get up and down.  However because there was a lot of volunteers we managed to overcome these.  I would like to think about getting an annual pass for the Zoo next year, when J2 is three.  Therefore I think that we are going to have to have a meeting with our wheelchair clinic about the possibility of getting some sort of motorised help for the chair. 

This will also help with another problem we are now facing.  Although  we are extremely lucky to live by the sea, you can only access the lower sea promenade by significant hills.  I am no longer able to get J1 up and down these on my own.  To be honest even if both my mum and I push we struggle.  This is very frustrating for all concerned, especially with the Summer Holidays imminent.

I am very much hoping that we do not have obstacles put in our way when we make this request.  J1 has recently been weighed and measured (height) and he is on a par with an 11 year old.  J1 is actually eight.  Not being a particularly big person myself, it is hard to accept that I am unable to even take my son for a walk and ice cream along the sea wall by which we live.

As I mentioned, it is the end of the school year for J1.  It has been a very different year for him as he went into a new class.  We were worried about how he would cope.  However, after only a short few weeks he had settled in well.  The class has been good for J1 in a lot of ways.  It has really helped his character to build.  He is developing his own sense of humour and is no longer so timid of other mobile children his age.  Up to this point he would meltdown if another child his age even said 'Hello'.

J1 does require a vast quantity of physiotherapy everyday however and there has been a few issues regarding this throughout the year.  I think it is always something that I am going to have to keep a very close on eye and reiterate constantly to all those involved with his care.  J1 can not move his own limbs with any real control.  Thus we have to ensure that we do this for him.  Can you imagine being set in one position for any length of time.  Think about how many times you shift position on the sofa, or in the car or in bed.  Remember that discomfort you feel if you wake up after a long sleep and go to stretch your leg?  That is a constant threat for J1, moreso because of the metal plates he has in his hips.

Another challenge we are now starting for face as J1 is getting older is his awareness.  This is not a bad thing by any means, it means his comprehension abilities are developing which is fantastic.  But, the negative side to this is he is also becoming aware of all the things he can not do.  He no longer wants to walk to the park with his brother.  He doesn't want to go out in the garden when the other children play on the trampoline.  He doesn't want to sit and have a drink with mummy in the local indoor play area while all the other children run around screaming and having fun.  He doesn't want to sit and have an ice cream while everyone else goes on the rides at the pier.  Who can blame him?

Luckily we have found a brilliant centre, quite local, that has some sensory rooms that he can enjoy.  This is great for rainy days (and there are plenty of those at the moment).  But other little activities that up to last year we could just about do (a few rides on the pier, getting him in the small gap on the trampoline) are no longer a viable option.

Therefore, it's time to spend this week thinking outside of the box and doing some research for fun things we can do over the six weeks break.  We have got a 'wheelchair bike' demo in August, with the hope that we will be able to obtain one soon.  J1 keeps asking to go for a bike ride, and absolutely adored it when we hired one on our recent trip.  Hearing him giggle uncontrollably, like other children do in the park or on the rides or on the trampoline - priceless.

I am also looking into the possibility of getting a wheelchair swing for the garden.  He thoroughly enjoys the one at school and would love to be able to take him in the garden to join in, every single day that we possibly can.  He deserves that.

In summary a lot of development is happening in our Special Needs part of life.  We have lots of calls to make, research to do and options to look at as everyday our wonderful little boy 'Grows Up'.

Join in Special Saturday by linking up on Facebook, Tweeting using the #Special Saturday, writing posts / note / odes.  Anything you want to do to help raise awareness of living with Special Needs and how amazing, challenging and rewarding it is.

Special Saturday : Special Needs in my Life

Special Saturday is a great hashtag. It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs. As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.


This week the wonderful Special Saturday prompt was to start your thoughts with

'Sharing my life with a person with Special Needs has...'

These are my thoughts:

Sharing my life with a person with Special Needs has rocked my world.  In a multitude of ways.

Firstly it rocked my world by oblitarating life as I knew it.  Kind of in the way that Superman hurls his enemies into space to float around in a timeless, impossible void.   I couldn't grasp the concept that my baby had suffered brain damage.  But there it was.  Quite literally in black and white on the scan.  A mark the size and shape of a thumb print on the left hand side of the brain.

Then my world was rocked back to shape by seeing the amazing miracles and achievements that my little boy was making everyday.  Will he walk?  No.  Will he sit?  No.  But he can tuck away a three course meal with pleasure and enjoyment and that is sadly something so many of the other wonderful Special Needs children we know can not do.  I learnt to be thankful for all the things he could do rather than resent all the things he couldn't.

Sometimes my world gets rocked and crushes me down.  Like today.  Whilst having a stretch out on his bed, from which he can see into the garden he said to me 'I can hear my brother, what is he doing?'  To which I replied 'He is on the trampoline.'.  He sighed and said 'I can hear him laughing.  He is having fun and giggling.  I can't do that.'  C.R.U.S.H.E.D.

Then there are days when my world rocks me into action.  I get up and think today I am going to get somewhere with XYZ equipment issue / person to chase / quote to get / charity to approach / school meeting.  I call and pester.  I email and leave messages.  I write letters and research things, until I feel I have made some small step forward. No matter how small it is.

There are also the days to recount when I have met some of the most wonderful people ever.  People who I really do not think I would have met had it not been for my son with Special Needs being in our life.  They are warm, loving, enthusiatic, friendly, open minded, strong and inspiring.  They are the teachers, teaching assistants, volunteers, helpers, carers, who help to look after my son when I am not there.  They are a special breed of human.  A wonderful one.  Their kindness rocks my world.

Sharing my life with someone with Special Needs has, I think made me a better person.  I used to be scared of and ignorant to disability.  I had never had any experiences with anyone who had disabilities or serious illness.  Now I understand that you smile and say hello and chat to that person in a wheelchair, or using crutches and the person standing by their side supporting them.  You chat to them as you would absolutely anyone else.  You don't look past them and make them invisible.  You ask about their disability and take an interest in that person. 

My sons Special Needs are great and varied.  They have caused issues to arise that I never would have dreamt would be something we would deal with under the umbrella of Cerebral Palsy.  But on the other side of the coin, his Special Needs have made our family closer, united, stronger.  Typically I would say we are a family who would usually take a backseat.  Just go with the flow.  Take what is said as what is right. 

You can not take that type of stand for your child with Special Needs.  You have to be strong.  You have to question.  You have to argue for what you think is right for your child and not just take the word of a professional, because chances are they will have only spent mere minutes (sometimes seconds) reviewing your child.  You know every inch of them.  You have to get your child the voice they can not yell with.

Sometimes I think I do a wonderful job, as a Special Needs mum.  Sometimes I think I do not fight hard enough for him.  We do not have every piece of equipment he probably needs.  We do not have some of the luxury items he could have to help enhance his life.  Sometimes it is hard, to get through everyday and on top of that find all the energy needed to do that extra fighting.  Other days it isn't hard.  Other days it is wonderful and I realise that sharing my life with a person with Special Needs has opened my eyes.

Special Saturday : Latest Achievement

Special Saturday is a great hashtag.  It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs.  As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.

This weeks Special Saturday theme is 'Latest Achievement'.  I mention frequently that I am amazed and astounded at what J1 achieves on a daily basis, be it an attempt at rolling, or getting him to do just one extra movement during physio, reaching and pincer holding something or counting to 5.  He does so much that fills me with pride, that it is difficult to think of one thing to highlight.

However, I have got to say that this week, with it being half term, and obviously getting much more one to one time with him, he has opened my eyes to how much more he is comprehending.  A fabulous example to give of this is the 'Days of the Week'.  For some time now, thanks to his wonderful school and teachers, he has been able to recite the days of the week.  It has been in a parrot like fashion and this on its own has been pleasing. 

But, in the last few days we have had very clear and concise (again another improvement that I could only have dreamt about a few years ago) conversations about what is happening on particular days of the week.  In addition to this he has quoted the correct days when asked questions; that is - what was yesterday; what is today; what day will it be tomorrow. 

This extra ability to demonstrate real comprehension of such things is something, I have to admit, I did not think would ever happen.  He is starting to show real development in his mental capabilities that is just stunning to me.  Some of those things that I grieved he might never be able to do are now becoming a reality and other realms of possibility are starting to open up and become reachable.

I guess the moral of this story is, never underestimate what your child can do.

#specialsaturday.

The Disability Diaries - Sneaky Sneaky...

Everyone has down days.  I have spoken about this before in a post entitled 'The Good, The Bad and The Ugly'.  Everyone is entitled to them and it is perfectly normal to have them.  We are not all Mary Poppins 'Height - Practically Perfect in Every Way'.  We do not live in a movie or a TV series.  We have real lives, with real issues and real emotions and sometimes, no matter how hard we try, and how much we busy ourselves to avoid them, sometimes, just sometimes, they get out. 

Since I had J1 and our lives surrounding the words 'disabilities', 'special needs', 'equipment' began I have to admit those 'down' days became much more frequent to me than they ever were before.  In fact, at one point not long after J1's diagnosis I was told I had 'reactive depression'.  And I had to admit I did.  I took heart that because it was a condition that had arisen due to a rather large shock that time would heal and it would drift away.  And it did.

And I am pleased to say that since that wretched year (it took about a year to bugger off and my brain to process all that had happened and start to cope again) I have managed to avoid any bouts of it since so I am happy that it was exactly what they said it was; reactive. 

What I have now I believe are perfectly normal 'down days' and after I have had them (and I again, am pleased to say that they do generally only last for one day) I look at them and think 'Hmmm cycle related?  Tiredness? Exhaustion?' Usually it's a combination of all 3 and my brain must think 'Er no, not today love, I need a day to wallow'.  But the important thing is I can pick it up, look at it, assess that it was a one off and file it away in the 'Down Days' lever arch with no worry.

I haven't had too many of late I am thrilled to say.  Probably because things have been so out of kilter with the Hubby's operation and such that I just plain haven't had the time and maybe that is why I just did not see the last one coming!  It caught me so off-guard it nearly knocked me into the next century because it followed our amazing day we'd had for J1's birthday.

In fairness, it was feeling under the weather, yet again, that was the first blow.  We have been blighted, like most households seem to have with this darn headcold that 'just won't quit' for over three weeks now.  And now it's delights have channelled into the sinuses, which led me to have my first ever migraine.  Dear Lord!  It was the worst pain I have felt bar child-birth and a mere mortal Ibruprofen did not touch the sides.  J2 looked at me with fear and trepidation as I cried in pain at a mere hair on my head moving.  Despite the Hubby's medical issues right now, he had to step in with the childcare, putting me in a darkened room with some codine and taking J2 on a jaunt on the train leaving me in silence to try and sleep it off.

But once I was down I was down, I could tell and I knew it was going to be a long and tearful day.  I cried at the tv, I cried at the happy birthday pictures from the day before, I cried at all the equipment in J1's room, I cried at the fact that although I love our house it just isn't big enough, I cried at all the tidying up I didn't feel up to doing, I cried at hearing sad news that my friends wife had finally been moved into a hospice, I cried when J2 wouldn't get his pyjama's on.  I maudled.  I felt sorry for my self.  I felt guilty for the struggles J1 endures everyday that I can't change.

I went to bed.

Sneaky Sneaky it sneaked up on me this time but I'll be ready next time and the next day I woke up anew and counted the blessing that I have in my life and filed that day away.