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 - Are coming back

It has been just over a year since I last posted on Lynsey The Mother Duck.  As explained in my last post, Beginnings, I wanted to take the little time I have available to start writing a first draft and to start a book review blog.

I am pleased to say I have managed to achieve both of those things, I am in the process of writing a first draft, via a structured course with Retreat West, and my review blog The Very Pink Notebook, has just celebrated it's one year anniversary. 

2016 proved to be somewhat of a stressful year for the length and breadth of Britain and for our family there was no exception.  It was a year for forcing the hand of change, with that came positives and negatives.  The biggest change was probably our move from England, across the bridge to Wales, and I am pleased to say it has been very positive. 

As is usual with any move, from a parental point of view, the biggest source of anxiety came from changing the children's school.  However, both boys have adjusted to the change amazingly well. 

J1, the little 4lb, 8 week premature baby that once fitted in my vest for kangaroo care, turned into a teenager at the end of last year, and some days we do see this...

Kevin the Teenager

(picture : wtffashionshark.com)

...which, given all his disabilities is, for us, brilliant news!  But a heck of a lot is going on with him at the moment and it is for this reason I have the compulsion to start writing on this blog again. 

So, I think I am going to bring back The Disability Diaries.  These are posts, written from the heart, about my real life experience of caring for a child with severe physical disabilities.  From the heartbreaks to the triumphs.  From the kindness of strangers to the fights over services and accessibility.  Written to help raise awareness of the day to day struggles a family can go through but equally to express the joy that can only be felt, when your eyes have been opened to a whole life you was not expecting.

  

 

New Beginnings

A very dear friend recently said goodbye to the blog for which she is known and loved.  A brave step, but the right thing for her.  We discussed this together, at length, in June and she stuck to her guns.  Seeing her 'take the plunge' prompted me to think about this, my own family lifestyle blog, which has been largely ignored for the last year. 

 

Whilst I adapted to life in a brand new area, away from the on-hand help of my parents, the small amount of child-free time I possess has been thinly spread.  Volunteering at both children's schools (a great way to settle into a new area and meet local people), keeping on top of all of the normal day to day running of our home, administrating the endless rounds of appointments and chasing professionals to ensure J1 has everything for his special needs and finally, planning, researching and writing the first draft of a novel. 

Blogging has become such a huge thing now, much more so than when I tentatively started out four or five years ago.  There are some absolutely amazing family life bloggers who have taken it much more seriously than I ever did, and flourished and reaped the rewards for the time and effort they put into making their blog work.  It is heartening to see. 

 

But a career was never why I started my blog.  Mine was born out of a pure need to get all my mixed up thoughts out of my head.  That coupled with a desire to write again.  After turning from a single mother with a busy full time job in London, to suddenly being a new wife and stay at home mother to my seven year old son with disabilities, and a new born, I found I was still constantly on the go, but had no one to talk to about it anymore.  When I stopped working all I could think about were the things I would not miss; the long, temperamental train commute; the cold, dark, early mornings and often late nights; sitting in an airless office with the sun shining outside; saying 'Yes, of course.' when what I really thought was 'Do it your bleeding self you lazy arse.'  I hadn't taken time to consider that as you grow older, friendships are mostly work-based and if you are not working ...

 

Let's just say it took me a while to adjust.

 

Blogging helped me to do that.  I not only found the therapy I needed in writing, but also a wonderful community.  Online acquaintances become real people, and I am lucky enough to say, real friends after being brave and attending the Britmums Live weekend that first year.  And for the next few years it became our annual get together.  But peoples lives move on, including mine, and suddenly I do not have a baby / toddler at home to constantly be entertaining and keeping ten steps ahead.  A window of opportunity opened. 

 

I came from a successful career I enjoyed but had never had a real passion for.  I grew up in an area where people were workers, no doubt about that, my whole family have toiled their whole lives - but no one said to us 'What do you really want to do?'  Work was to earn money and keep your head above water.  Choose a job you could do and maintain. I did well, flourished in my roles and climbed the ladder to having a career, rather than just a job, and that is when I realised, I could have done anything had I known.

 

I am not saying University was frowned upon, not by any means.  I was quite academic and I was one of the few encouraged into further education, but I still didn't have any idea of the opportunities, I have since discovered, would have been available within the literary industry had I really taken the bull by the horns in my younger years.

 

But I digress.  I guess what I am trying to say is I love my blog, it was my baby and it has been lovely nurturing it and watching it develop.  But in the main scheme of things, it is run of the mill, one of many, not one of the best.  I have sat and looked at it, many times, over the last year and thought I just don't know what to write?  I suppose because I have now adjusted to how our family unit works, I don't need to write posts to try and straighten out the thoughts in my head.  Well, apart from on one thing. 

 

Disability.

 

The disability section of this blog, The Disability Diaries, for which I can probably say has been it's most successful part in terms of 'blog success', is still something I do find myself needing to write about.  I probably always will.  

 

So, I am not closing this blog down.  But, I am making it purely about The Disability Diaries. 

 

I always wanted The Diaries to help raise awareness of the challenges faced by those who share disability within their lives in some way, and I want to continue to do that, it is as vitality important to me as forging myself a new career involving the written word.

 

Which, by the way, I am also planning on doing.

 

I am launching a new blog in February called The Very Pink Notebook, dedicated to all things bookish.  Reviews, releases, author interviews, tours.  As soon as the site is live I will be posting the link.  If you love the world of books as much as me, please follow and support.  I hope it gives you as much enjoyment to read as I am hoping it will give me to write and develop.

 

Of course, I continue to pursue the big dream too.  The novel.  I am having a wonderful time exploring and learning all about the industry which I hope to one day be a part of in some way.  There is a blog prepared for that too.  I will document my journey - but now is not quite the right time for that launch.  When it is you will be first to know.

 

No, when I was young no one really ever asked - What do you want to do?  So I decided to ask it myself. 

 

Wish me luck.      

 

 

   

The Disability Diaries : Growth

When the letter arrived home from school, stating that J1 had an 'Activity Week' approaching, I read it and wondered if it might all be a bit too much for him to cope with.  A whole week of being out of routine.  A whole week of travelling to different venues.  A whole week of extra curricular, over stimulation for his brain.

However, as the week drew closer J1 showed none of his usual 'out of routine' anxiety.  When I mentioned it to him in conversation, which I tried to do every evening whilst I got him ready for bed, he got excited and repeated back what he had heard in class about the activities.  He even started to do his 'excited' clench.

 

However, having 10 years of experience on my side, my own anxieties did not lay to rest as I pessimistically thought 'The meltdown will come at some point.'

 

But... It never did.

 

It never did!

 

I waited for it to start appearing, the constant repetition that 'He doesn't have too.' or the waking in the night crying and saying 'He'll stay home today.'  Like the rain you expect to see after having two days of blazing sunshine on the UK shores in the summer, I waited.

 

Nada.

 

Nowt.

 

Not a peep.

 

He continued to be excited and verbally upbeat.  So we responded in the same way and by the time Monday morning arrived the house was buzzing with talk of 'Activity Week.'

 

The first day I had to drop him to the venue as it was a park closer to our home than the school.  My own anxieties returned, in the past when I have taken him somewhere with the school he would cry for me as I tried to leave.  But this year, when handover came, he was more interested in his friends and what they had brought for lunch and didn't give me a backward glance.  I actually walked away, back to the car to the sounds of 'Byeeeeeee Mummmmmm!'

 

I could have cried.

 

With joy! 

 

Such progress!  Such growth!  I had not seen it coming.

 

Puffed up with pride I looked forward to the following day when I would be, cue dramatic music, staying for the day with the class on the farm trip.

 

I was not to be disappointed and I must say, etch it in stone for it to lay written forever, it was one of the best days of my life.

 

I got to spend the day watching, with my own eyes, just how far J1 has come since January.  He has built real friendships.  Buddies.  School pals.  The other children wanted to hang back with him, hold his hand, chill with him.  Spend time in his company.  They argued over who's turn it was to sit next to him for lunch.  And J1 revelled in it. 

 

As did I.  Gone was the school trip of past whereby if I so much as attempted to smile at another student he would burst into uncontrollable sobbing.  He wore a smile all day, as bright and beautiful as the sun.

 

We always look for achievements for our children.  For J1 this was a huge one.  It was one giant step towards independence.  The only thing I really pray he will achieve, and achieve fully in life.  Despite of his physical disabilities.  To have friends to laugh and joke with.  To have friends to share experiences with.  To get involved. To enjoy life.

 

My boy is growing.

The Disability Diaries : What I Didn't Want To Hear

You know that song, 'La La La,' that came out last year?  The one with the video where the little boy sticks his fingers in his ears when he doesn't want to listen to the man that is shouting at him anymore?  Sometimes I want to do that.  Stick my fingers in my ears.  Stick my fingers in my ears and not listen to the voice on the other end of the phone that is telling me they believe my son just had a seizure at school. 

 

A seizure.  A prolonged absence to be precise.  A form of epileptic activity.

 

In the graceful words of a dear friend : 'Shit.'

 

The school had mentioned they wondered if he may have been having some form of absence a few weeks back, but not having heard anymore since then I blissfully blocked it out and told myself they were probably just being over sensitive because he is still relatively new to the school.  And, in my defence, it hasn't been something that I have noticed at home.

 

But having said that, time at home is for complete chill and wind down space.  J1 is so tired from his school day, when he comes in his wants his tea, a stretch out with TV time, swiftly followed by lights out.

 

The phone call from the school, telling me this happened whilst he was having his physiotherapy carried out, was followed by a frantic call to J1's father and then straight onto the doctors.  Explaining the situation I felt physically gutted to have to relay that yes, he used to have them, but he hasn't suffered since he was about six. 

 

Why couldn't they just stay away? 

 

The doctor noted that she would make an immediate referral to a Paediatrician who would see him and probably refer him for EEG testing.  I remember the last time he had one of those.  He must have been about two.  For eight years we managed to avoid the need for any further intervention.

 

Gutted.

 

Since then he has been watched like a hawk.  Any lack of blinking observed and determined as 'an absence' or just a lack of blinking.  He has looked at me a few times, studying him intently and actually said in that sulky, teen (even though he is only 10) way

 

 "What?" 

 

Hearing that sends floods of joy through me.  My reply is to go and hug him, as tightly as I can, given you also have to hug whatever piece of equipment is keeping him upright at the time.

 

That is one of the really hard things about the form of J1's disability.  Because he has no trunk control, and I mean none, he always has to have support so it is almost impossible to give him a proper hug.  The equipment is stealing my hugs I always feel.  I try and lay alongside him on the bed and hold him, but he can't reciprocate and it is tough when he can't move to allow you to get your arm right under him.  It is now impossible for me to try and hold him up with just one arm, he has grown too much, too quickly.  I didn't realise how soon easy hug time with my son could be taken away.

 

Because of this I find myself being a little over zealous with hug opportunities with J2, but he is still so young he doesn't mind.  I wonder what I will do when the day will inevitably arrives where he pulls away.  Cue fingers in ears.  With eyes closed too.

 

So, after having just one day of feeling upbeat because things seemed to be coming together, this now raises its ugly head.  I once again am waiting at the mercy of the professionals to try and work out what is going on in that beautiful little head of his.  I asked him the other day, whilst he slept so peacefully.  I didn't get an answer.

 

I just hope they do.

 

The Disability Diaries : Recognising Progress

Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue.  Writing about it is my way of settling the mind or venting the anger.  It doesn't solve the problem but it helps clear my mind or form a plan.  Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place.  After that there is just the fiddly task of getting the pieces to stick together.

 

A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities.  We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored.  Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages.  It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.

 

A few months on and slowly I feel someone has started throwing us some tools to help climb that wall.  The school review saw a referral for a CND put into motion.  The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name!  With her in place, several of the other issues are now being sorted out.  As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.

 

Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed.  What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position.  I am a 60kg female and my son is 54kg.  To try and pull him back up the bed, against the friction of the bed sheet is no easy task.  I don't expect it to be easy but I am always looking for ways to make it easier.  To know these sheets have been available but never suggested to me before is quite frustrating.  He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.

 

Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.

 

On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1.  When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well.  We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried.  But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.

 

Cue, The Water Genie.  This ingenious item is essentially a blow up paddling pool for the bed.  It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water.  After washing it sucks all the water back out.  Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations.  No matter what equipment you get to help, they all have something you haven't thought of.  For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean? 

 

Another example of this is hoisting.  Yes, a hoist is essential and much needed and we could not live without one.  But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger.  Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat.  The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard.  Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision.  Before you even get to that stage you have to get the hoist sling in place.  And that is so much fun. 

 

The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position.  To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight').  Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees).  The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt).  Then all the straps (six in all) can be lined up ready to hook up to the hoist arm.  Easy as hell hey?! 

 

But as I said, this post isn't to gripe.  I am fully aware in the case of disability, nothing is easy.  All these things are just to try and make life easier.  And I am so relieved that we now seem to be getting somewhere with it all.  Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.

 

J1 should, this very week, be receiving a referral to a specialist spine unit.  This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it.  Our job is to ensure he is seen by the best people he possibly can be.

 

We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).

 

We persevered and had a very good appointment at wheelchair clinic.  For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.

 

All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1. 

 

And that is the only thing that matters.

 

This is always going to be an on-going and continuous way of life for us.  So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.

 

 

 

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.

Coming Soon...

A series of Disability Diaries posts looking at travelling to Florida, USA with a disabled child.

Featuring.... This cool dude

This little monster

These awesome guys

 

And...this crazy lady!

The Disability Diaries : Netbuddy - A great resource

As anyone who comes across my blog is aware, disability and special needs feature a lot, because I have a son who has Cerebral Palsy and consequently disabilities and special needs.

 

I was recently contacted, because of this, by the website 'Netbuddy'.  They asked if I would be happy to feature an article on their behalf.  I was unsure what Netbuddy was at first, but soon found out and was more than happy to help.

 

Netbuddy is a fantastic resource for parents with children of learning disabilities, autism and special needs of any description.  It is a place where parents can come and share information - and as any parent of a child with disabilities and / or special needs that is vital as clear and real information can be hard to come by sometimes. 

 

The article below outlines much better than I can the importance of Netbuddy, as it is written by the amazing women who founded it.  Please share this post, so as many parents as possible can be made aware of this website - the more people involved in it the better it will work.

 

 

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Parents are the real experts says learning disability charity founder

Deborah Gundle talks about her self-styled ‘mumsnet for special needs’ www.netbuddy.org.uk and how other parents are the key to making it work

When my oldest son Zach was born, I knew instinctively that something wasn’t right.  At 7 months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.

Looking back, I wish I’d asked for more help from my family and friends in those early years, because I know now they would have been happy to give it. It’s often hard for other people to help, unless you tell them exactly what they can do.

One of the things I struggled with when Zach was little was how much time and energy I’d spend solving day-to-day problems. Zach was still crawling till he was about seven, and I spent ages trying different things to protect his knees, which were always rough and bruised. Finally I hit on the perfect solution – goalkeeper trousers for kids, which were padded in all the right places. But Zach was nearly six by then, and I couldn’t help wishing I’d known earlier.

That’s how the idea for Netbuddy came about. It would have been so helpful to have some sort of practical handbook, with tips and ideas for all the problems I encountered when Zach was growing up. But of course nothing like that existed.  I knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.

Health visitors and professionals were, of course helpful, but unless you have direct experience of learning disability – unless you’re living with it day-to-day, you can’t really know what it’s like.

I launched www.Netbuddy.org.uk two years ago with the aim of capturing that huge wealth of expertise that parents and carers have, and making it easily available for other people to tap in to.  I wanted to create a place where people could submit and search for tips on a whole range of practical issues – everything from bed-wetting to coping with challenging behaviour.

Of course, when you’re a parent to someone with special needs, caring doesn’t end when they become an adult. So Netbuddy offers tips for people of all ages. Zach is 18 now, and he’s going through one of the most important stages of his life – the transition from children’s to adults ‘ services. I value any advice I can get from other parents who have already been through this process.

That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.

Netbuddy works because people in the learning disability community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.

I am delighted by how quickly the site has taken off, and by the strength of the community we have already developed at Netbuddy. But in some respects I’m not surprised by it because Netbuddy fills a very basic need for practical problem-solving that everybody has.

We’ve had people writing in telling us that a tip they’ve picked up on Netbuddy has changed their lives. Sometimes it can be a really simple idea, but it might have given them their first full night’s sleep in 10 years or provided the breakthrough in toilet training they’d been desperate for.

Netbuddy has also hit a chord with professionals– teachers, nurses, therapists, support workers – who come into contact with people with learning disabilities through their work. They use the site to pick up tips and ideas for themselves, but also to pass on to families they support.

Last month, Samantha Cameron hosted a reception for Netbuddy at Downing Street. She described Netbuddy as a ‘vital resource’ for families who are affected by learning disability. It was wonderful to have that recognition, not just from someone so high-profile, but also from another parent. Having had a child with special needs herself, she really understood how important Netbuddy was.

It does feel like we’ve come a long way very quickly, but we still want to reach a lot more families and carers who could benefit from using Netbuddy. As parents, we have a goldmine of useful information at our fingertips, and it’s up to us to pass it on.

To find out more about Netbuddy, visit www.netbuddy.org.uk

 

Deborah & Zach

The Disability Diaries : Doing it our way

I haven't posted about this before, because I didn't feel it was appropriate at the time, when we were in the midst of it.  But since I had a meeting yesterday to 'close off our case' I now feel I can.

 

I wrote, on several occasions last year, posts on how J1 was becoming much more knowing.  It had caused me much joy and equally as much pain.  It was wonderful to see his brain processing information as it should, and him comprehending situation we wasn't sure would be possible.  The heartbreak of it throughout however, was seeing him realise - for the first time - the barriers / consequences of his disabilities. 

 

He realised he could not run around the garden with his brother and cousins.

 

He realised he could not jump on a bike and go out and play.

 

He realised he could not rush off to the indoor play station at our local soft play.

 

He realised he could not stand up and jump on the trampoline.

 

It was a hard summer in that respect.  If your son said to you 'Mummy could you put the cycling helmet on me, and bring the bike over here so I can hold the handles and pretend I can ride it?' Wouldn't that break your heart too?

 

As the reality of his disabilities dawned on J1, the realisation that he is growing up mentally, settled on me.  I deliberated on my own, talked to my husband, parents, friends and professionals at the school about whether it was time to release the apron strings a little. 

 

I had to assess if J1 was perhaps ready for some company outside of just his family.  This was an alien concept to me.  It was one that I found hard to acknowledge.  We had always coped between us, but was that really best for him?

 

We were advised that our best course of action would be to get a referral for a social worker to look at our case.  The ultimate goal was to have our case changed to 'Direct Payments' (it isn't a payment in money - you get allocated 'hours' that you can book professionals/carers time).  After much waiting we finally were assigned a social worker, who came out for a lengthy discussion.

 

We explained how we felt J1 was lacking support in terms of being able to enjoy some social time.  We explained how difficult it had become to even take him swimming (his favourite thing) as we needed at least three people to be able to lift him in and out of a 'normal' swimming pool. 

 

We explained we had tried to book a special hydro-pool, but it charged by the hour (£22) and we needed two.  Also, because of its popularity if you wanted to secure a session you had to book in blocks of four weeks.  An hours swim - the other hour was spent undressing him, hoisting him in and out of the pool, getting him dried and dressed and hoisted back into his wheelchair - suddenly cost £176 a month.

 

We also explained that J1 had turned from a little boy that would have nothing to do with anyone but members of the family, to really enjoying the company of other people and we felt it would benefit him to continue to encourage that, especially as he get older.

 

The social worker agreed that his quality of life could be improved by him being awarded Direct Payments and told us she would suggest that we be allocated three hours per week.

 

We waited about four months.  We still had not heard anything.  Not being overtly pushy people (we seriously need to learn that we have to be).  After much chasing we received a sketchy call saying our Social Worker would come out and visit us.

 

The visit came around and after a good hour of polite, if somewhat strained chit chat I bit the bullet and asked what was going on with our request.

 

The answer.

 

Denied.  You are more than coping on your own.  Maybe try again in a few years when your parents are 65.

 

No one had even given us the courtesy of informing us.

 

We politely smiled and saw the social worker off.  Then the air turned blue around me as I vented my frustration.  I went home to my husband and burst into angry tears.  I felt we had asked for the absolute bare minimum for him and had been denied - after never asking anything of them in that respect before - even for all the years I had been a single parent with him.

 

Yes, that was right.  I had coped.  I had stood up and said I can look after my son.  So they say, great you don't need us at all.

 

The next day, I found I hadn't calmed down as much as I would have hoped.  Probably because I didn't feel it was me that had been denied, but my nine year old severely disabled son.  So I did what I know how to do best.  I channelled my frustration at life, at 'the system' and set about resolving the issues on my own.

 

I wanted to be able to get a family Gold Pass for the Zoo.  We had discussed that if we had been awarded D.P we could have had someone help us push him around the site, therefore it would be possible for just me and my mum to take him.  We needed extra man power to get him around the un-level terrain. 

 

A power pack for the wheelchair. 

 

We looked into it.  We applied.

 

We were successful. 

 

We can now take him to the zoo, whenever we like.  So on a 'bonus' pleasant day, when before we would have said 'It's a shame we can't go to the Zoo.' We can.

 

We thought about the bike issue.  J1 had loved the adapted bike at Centre Parcs but they are so expensive we had always been hesitant about approaching a charity for help with one.  Fuelled by the need to make up for what he had lost out on we booked a rep and had a fun morning with the suitable options.

 

That afternoon we filled in our submission and once we had our quote and supporting letters from the relevant professionals we posted it and crossed our fingers.  There was quite a lot of back and forth with the application but you can imagine our sheer delight when we got a positive outcome.  The charities were helpful and understanding.  And when we told J1 about the news hearing him say 'Can I have a red one?' made me realise that it was all worth it.  For Christmas santa delivered a ride cycle helmet and a matching red bell.

 

Those two things will make a huge difference to us all.  But most of all it is enabling J1 to experience childhood activities, such as going to the Zoo and for a bike ride, like every child should be able to enjoy.

 

No bureaucratic department is going to stop us from achieving that for our son.

 

Now we are waiting for our new Scout hut to open and although it will probably have to be my husband or dad that attends with him I think he will really enjoy it.  I am looking into the possibility of getting him a wheelchair platform swing for the garden.  We have also discovered some great offers at our local bowling alley for mid-week lanes.

 

And J1 does love a game of bowling... even if it is only with his family.

Best Post of 2012

The last day ever...ever of this year...

2012, for us, has been a good one.  In the UK we have celebrated some momentus occcasions and overall I think we have felt proud to be British.

I am looking forward to 2013.  I want to enter it with gusto and keep that drive going throughout the year.  I hope that my summary post of 2013 will be as positive and packed as the one for 2012.

I have been pleased with how many posts I have written this year, given the limited time I have to sit and write.  But which has been my best one?  This was quite easy for me to choose.  It is the post that people often mention to me, and when I think of my blog, I immediately think of this particular post.

So, with drum roll and drama... MY BEST POST OF 2012 IS...

 

DREAMING OF RUNNING

 

Channel 4, the official broadcasters of the 2012 Paralympic 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.



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.

The Disability Diaries (The Life of J1) : The Holiday - Ahoy Matey

Now we have taken the plunge and booked our Exciting Adventure to Florida next year there is still much researching and planning that is needed.

The flight seat is top priority and I think it has now come to the point where we are going to need to go and view what is on offer to ascertain what is going to be the best option for J1.  At this point in time I have concerns and I hope by going to actually see them they will be quelled.  For anyone wondering why this was not looked at before booking the flight - the answer is - it was.  We saw the picture of the seat insert to the chair and thought wonderful and fantastic.  Then, however, we got further details and it transpires that even though it should go up to a child age 11/12, because of the double hip operations J1 has suffered - which makes his hip width rather large - it will not fit him.  This leaves us with the adult option.  Thus, we need to go and check it out.

After much 'Google Map' time with my mum, I think we are happy that the hotels and areas that we have chosen as our destination are suitable with plenty of things to do for both adults and the children alike.  One of the activities we found is something that my mum has wanted to do for years (kid at heart my mum) - Go on a Pirate Ship.

A Pirate Ship you may ask?  Yes A Pirate Ship.  And at the beach you can do just such a thing.  After looking at the Captain Memo Pirate Ship website we couldn't see any information about whether it was wheelchair accessible.  What we did see however was an email address.  Pinging them an 'Ahoy There!' email outlining J1's accessibility issues in the morning I did not expect such a quick and friendly response.  

The same afternoon I obtained a reply stating that the ship would welcome J1 with open arms.  Was the wheelchair manual or electric, manual is easier to navigate around the ship.  Do not worry, they assured us, the crew is fully trained and can entertain children of all ages and abilities (or disabilities).  They advised us to go on a morning cruise as these tend to be quieter, thus allowing J1 easier movement around desk.  Book a few days in advance and we'll be having our faces painted pirate before we can sing an old sea shanty before you know it!

What a refreshing response this was.  I am so used to hearing, sorry we can not accommodate.  Or parts of the venue will be accessible but not all.  So now we are all really looking forward to this, and we have decided that if we go early enough into our week at the beach, if we love it we can always book and go again a few days later.

Ohhhh-Arrrrrrhhhhh Matey's!

The Disability Diaries (The Life of J1) : A Very 'Special Needs' Harvest Festival

I have noted on many occasions how highly I think of my eldest Sons, J1, school.  I believe his time at the school has enhanced his life in almost every way possible.  It is the school, I maintain, that turned him from saying two words into a chatterbox.  It is the school that has helped him to develop a wonderful sense of humour.  It is the school that has made him accepting of other children his age, instead of being afraid of them.

For those who have no experience of being involved with a Special Needs school, they may think it would be very different to a mainstream school.  In lots of way it is.  Along with the teachers there is a much higher ratio of 'teaching assistants' in each class.  The school is usually also host to a lot of 'Ists' on a daily basis.  For example, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Music Therapists.  Outside of the classroom is an array of equipment; wheelchairs, standing frames, walking frames; mobile hoists; wedges.  There is usually a few people fixing and adjusting those pieces of kit. 

Instead of classes being host to a tiny cubicle with small toilet and sink they are built with a large 'changing place' and along with the more able-bodied childrens facility there is also a hoist, a changing bench and storage unit to hold all the individual supplies of pads.  There are an array of sensory rooms, soft rooms, quiet rooms - places children with the need for their own space can go and feel calm.  There is a full time on-site nurse to help ensure that all medication and intravenous 'food and drink' is administered correctly.

In the playground you will find all the usual items but in addition to this you will find a roundabout and swing that a wheelchair can be fixed onto.  A sensory garden with wind chimes and colour-makers.

However, in the midst of all these 'differences' many things are the same.  The school day starts at 09:00 and ends at 15:00.  They have morning break time and lunch time in the big hall.  They have Assembly on a Friday afternoon.  They have a school curriculum to work through, parent / teacher evenings, end of year reports and an Annual Awards Ceremony.

I did not know what to expect when J1 started.  I suppose I expected that he would be 'learning' a little in addition to his physical needs for Physiotherapy etc.  I did not expect him to be learning as much as he is - shame on me for not realising my sons capabilities and thank God for the school that they did! 

What I did not expect was that the children would participate in all the things I did at school.  I suppose I thought what with providing education as any school would and attending to all the extra needs of the children, they would have the time.  How wrong was I. 

 

Every year we attend the Christmas Fair, with many stalls being full of things the classes have made themselves.  It never fails to amaze me how they manage it.  We go along and are moved by the Christmas Play, with each class having their own starring moment.  Fundraisers are held each term, this one was a sponsored walk.  The entire school participates.  They have field trips regularly and a whole school outing in the Summer.  No child misses out, unless the parent feels it is necessary.  How a school does this, when catering for such a wide range of Special Needs is, in my opinion, pretty amazing.

 

One of my favourite school events however is Harvest Festival.  I think because I used to enjoy it myself.  It was exciting to go out to a different venue and sing with the school and perform whatever our class was doing.  Each year the local church opens its doors for our children.  We are treated to readings, songs, dancing and a reminder that we really should be grateful for the abundance of food we have available to us.

 

I think it is one of those triggers that it really is Autumn and I have already posted about how much I love Autumn.  It is also beautiful to see all the pupils doing something that every other school does, no matter what their disability.  It is a heart warming sight of inclusiveness that I am blessed and thankful for witnessing.   

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.

 

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