WORRIES AND THE THINGS WE NEVER SPEAK ABOUT

The time is just after 8.30 a.m.   

Already I have walked the dog, made the bed and cleaned the house.  No I am not Superwoman, far from it, there is just one reason for all this activity – Jessica is in hospital today and when I am stressed I clean.   

It is only a minor exploratory operation she is having, she has failed most of the hearing tests and although she does hear things she still does not form words and there is a feeling that she may only be hearing muffled sounds.  The procedure today is to put her under general anaesthetic and examine her ears to see if there is a build up of fluid, which is causing this, if so then this can be fixed hopefully by fitting grommets.  If not then obviously we shall have to see what they come up with.

So in the general scheme of things I suppose I should not be too worried, after all children have operations like this all the time.  The truth of the matter is that I do worry; of course I worry, just as her parents are worrying at this very moment probably for all of the same reasons.  The fact is that we do not always admit to each other we are worried.  If we did then we would be forced to admit what we are worrying about and it is so hard to do that.  Like walking on the cracks in the pavement or going under a ladder, by admitting to these worries it is almost like we are jinxing ourselves, allowing the bad things to happen. 

I have something to admit to you that I have never told anyone else before.  When the bad voices come into my head telling me what might go wrong I screw my eyes up  tight in a bid to send them away.  This is something I have always done since being a small child.  Somehow I feel that if I screw my eyes up really tight and banish these thoughts from my mind then everything will be alright. I will not have jinxed the situation.   So, why is a woman on the wrong side of her 50’s admitting to such childish behaviour?   Simply this, I have come to realise that more damage is done to both body and soul through this ‘stiff upper lip’ approach, this fear of admitting to worries, it is not a sign of weakness it is a sign that we are human and we care.

As a family we pull together and generally are seen to be coping really well.  We are very open with our feelings on most things but there are some things that we just never talk about, the things that are too painful to think about, the things that have me screwing up my eyes so tight that daylight cannot penetrate.  My late Mother always used to say the word ‘cancer’ in a sort of hushed whisper, almost as if by saying the word out loud would bring something bad.

Like the alcoholic in front of the AA meeting I am going to admit now some of my unspoken worries.

I worry about what the future holds for Jess (eyes tightly shut). 

I worry about the impact this will have on her parents and Sister. (screws eyes up again).

I worry about my youngest Daughter who I love just as much as her big Sister and whose life is just as important to me but have I ever told her?  (tears).

The first two of my ‘worries’ I cannot do anything about but I suppose I needed to come to terms with the fact that I do have them and they are nothing I should be ashamed of or frightened of thinking about.

The third I have just done something about as my Daughter just called me to see if I had heard how Jess was doing and I told her what I had written.  She said I was a twit and that has somehow made me feel much better!

Dealing with bad situations seem to follow a pattern, almost like a grieving process.  It has been said that parents of children with disabilities go through this process as they are grieving for the child they have not got.  But if they try and tell someone else that, it can come across as if they are saying they don’t love the child that they have which of course is not true.

There does seem to be a  ‘denial’, well not actually a denial in the strict sense of the word perhaps, but more of an attitude given to the outside world that everything is o.k., ‘we are managing’, 'things could have been a lot worse' and so on and so forth.  This gives a false sense of what that person is going through. People can become almost blasé about it, you will hear comments like ‘oh things can’t be that bad, they say they are fine’.   Family and friends will ask if you are o.k. but when they are told ‘yes, no problem, we are fine’ then they feel as if there is nothing more to be said on the matter.  Some may even comment upon how well you are coping and you may feel like screaming at them but before you cross them off your Christmas list for being insensitive just think – how did you react when they asked you how you were in the first place?

Truth is that you probably wanted to say ‘I really feel s**t at the moment, I can’t understand why this is happening to me, but if I tell you you will think that I am moaning and that I am a weak person'.

There is also the ‘always look on the bright side of life’ approach.  Perhaps the one that my family take on board.  The feeling that if you admit to having various worries or fears then you are being negative and that will not help anyone.  True enough but I am beginning to realise that even that can be a form of denial.

Eventually I think the body just has to give in.  The strain of having to keep ‘putting on a brave face’ becomes too much.  People can become withdrawn not wanting to shed the tears (that eventually have to fall) with those around them. 

To finish on a good note, I have just been notified that Jess is now out of theatre and has had to have grommets fitted; she now has full hearing in the left ear and nearly full hearing in the right. 

This is the photo I have just been sent

 

Perhaps now I can open my eyes!

ONE STEP AT A TIME

Forget education...... repetition, repetition, repetition is our mantra.  I think that children like Jessica  need to have whatever it is you are trying to teach them repeated many times in a simple form, whether it be a new word or a new skill then the key seems to be take it slowly and repeat daily but never ever stop trying.

I am not a very patient person at the best of times. If I have a new electrical gadget or computer game, then I tend to skip the instructions as I can’t wait to use it, only to be forced to go back later and read them as I cannot get the item to work.  If there is one thing that I have learnt whilst helping to care for Jess (to be honest she has taught me a lot) it is to have patience.  Jess will not be rushed.  She does things at her own pace, but when she does achieve something then the results are worth the wait.

Lets take signing for example.  At the moment Jess is mainly non verbal although she does babble and has said Momma, Dadda and even Nanna or Nan but these are not said all the time and she certainly does not engage in any form of conversation, but having said that we know that she understands what we say as she does respond to certain things we ask her to do, or in the most recent cases tell her NOT to do!  

It has been said that she may never be able to have an adult conversation but that was the opinion of someone who did not know us or Jess for that matter and so we do not take it as gospel, but in the event that speech is going to be difficult for her then it is important that other ways of communication are explored.  Hence Makaton signing. 

Makaton is not a language in it’s own right as is British or American Sign Language but rather an aid to communication.  The spoken word is still used but is accompanied by visual signs either hand gestures or pictures (or both).  The SEN Nursery that Jess attends use Makaton and so Jess is learning it whilst there. There is also the BBC children’s favourite Mr Tumble who appears on the Something Special programme, which is designed to teach Makaton to children.  A programme that Jess loves and I have to say that I am rather addicted to it myself and have learnt a lot from watching with her.  There is also Sing & Sign which is where babies (not necessarily those with different needs) learn songs and a few simple signs to accompany the spoken word, it is not meant to be Makaton as such but some of the signs are the same or very similar.  Jess goes to sing and sign with her Mum each week and we also have a video, which we watch together. 

We have been using a few basic signs with Jess for a while now but to be honest she had shown no interest in using any of them although as previously stated we knew that she understood what we were asking of her or trying to convey.  So bearing our family mantra in mind we carry on.  This is what happened the other week – Jess actually signs for more!  The Makaton sign for more is to make an upturned fist with one hand and to put the palm of your other hand on top of this (as if you were pushing a stopper into a bottle).  Young children and especially those with limited fine motor skills find it hard to make an upturned fist so will use the palm of one hand over the top of the other hand or arm.  Makaton does not have to be an exact science, as long as the gesture is approximate and you are consistent then that is fine.  As you will see from the following video clip Jessica’s first sign is very deliberate (palm over the arm) then she follows this up with palm over the hand (albeit briefly).  I have to say that she had been signing like this a few times during that particular snack time before I suddenly thought about videoing it!  I was so excited to see her responding to my question that at first I never thought about recording it. 

JESS SIGNS FOR MORE

We had been doing the ‘more’ exercise with her for a while and it features in the sing and sign class and video.  Often whilst saying the word ‘more’ we would make the sign for her using her hands (palm over top of hand) and this would be repeated slowly a few times each day.

My next example is walking.  Again we were told that Jess may never be able to walk, but then we were also told she may never sit up or crawl so bang goes that theory as she now does both!    Back in February this year I posted a video clip of Jess taking her first tentative steps with me holding her around the waist.  We were so excited. This proved to us that she had the capability to walk, all we needed to do was work on it.   A couple of months ago she started to take a few sideways steps on her own holding onto the window ledge.  Now she cruises around the furniture, pulling herself up on anything she can.  This is such a breakthrough but we need more from her if she is able to walk properly.  She is getting an expert at walking sidewards but now has to learn to go forwards.  This is not as easy as it sounds.  For a start Jessica did not have a lot of confidence in walking forwards even if her hands were being held and she would just sit down again.  My Husband who is brilliant at making things, made some parallel bars for her to practice going forwards.  A few minutes each day were spent on these bars but still Jess was not keen and would return to walking sidewards along them.  Hubby’s recent invention is a wooden cart that she can push, much better than the conventional baby walkers as this is designed so that it will not tip up when she pulls herself up by the handle, it also has wheels that can be adjusted for speed so that they do not run away with her.  Jessica has had a few attempts but seemed more interested in playing with the wheels at one point, but again it has been used each day even if only for a few minutes (it is important that she is never forced to do anything and if she starts to get upset then we leave that for the day and continue again tomorrow).   The next clips shows how this has paid off.  You will see that Jessica is now quite happy to move forwards with the cart although I am the one that is pushing it as she has not quite mastered how to do that yet! 

JESS WITH HER HOMEMADE WALKER

Today Emma, Jess and I went to pick Natalie up from school.  Jess walked across the playground with Emma holding her one hand and me the other and on the way back Natalie had her one hand and I had the other.  Such a breakthrough!  She may always need some assistance, perhaps some sort of walking frame in the near future, but who cares, the fact is that she is once again proving the experts wrong.

I heard recently about a child with obvious disabilities being left to just walk around a room full of toys and activities whilst the parents just sat talking.  There was plenty of opportunity for the parents to engage in something with the child but instead they chose to let the child just wonder around on it’s own as to them this was all the child could do -walk around in its own little world.   How sad that story was.  Who knows what skills this child could have learnt if only someone had taken the time to ‘tap’ into that world and gently coax him out of it a bit.  Perhaps the parents had been told  that their child would never be able to interact and therefore there was nothing they could do to change that.   

One thing that Emma & Ben have never done is to treat Jessica in a different way to her older Sister.  Yes she has different needs and these have to be met, but she is not ‘wrapped up in cotton wool’, she is given as many experiences as she can manage, for example she loves to go to the park and has experienced the swings and the slide (with help).  Recently they went to a bonfire and fireworks display as a family.  They were not sure how Jess with her sensory issues would react to fireworks but felt they needed to try her.  As it turned out it was Natalie that was unsure and Jess was laughing all the way through the display!  It would have been easy to assume that Jessica would not like them and to have left her with another family member, but that is not how they are and Jessica is all the better for it.   

AT THE PARK

Caring for a child with different needs is hard work, especially if you have other children, but the hard work does pay off, albeit one step at a time.

To learn more about Makaton click here 

SOMETHING FOR THE WEEKEND?

Last weekend Hubby and I were looking after the grandchildren as their parents had been invited to a wedding in London so they were going to stay overnight.  I would be staying over at their house as Jess is too big for her travel cot now and there was also the issue of the night pump, which is used to feed her slowly through the night via her gastrostomy button.

I have to admit that although I have no problem feeding Jess with her top ups during the day via her G tube and using a large syringe, I have never had to set up the night pump and I was rather apprehensive.  I was also quite worried about not hearing her in the night if she started to cough which can often lead to her being sick if the pump is not turned off for a time until the coughing subsides.  Hubby was going to have to go home to sleep as we have two dogs so I could not rely on him to wake me. I also had this nagging fear that she might wake up and pull the tube.  My worst nightmare has always been that she might one day pull out the Mickey button, we do have an emergency ‘peg’ which has to be inserted into the hole as soon as possible should this occur but the thought of having to do that fills me with dread.

Emma gave me a quick lesson on how to set the pump up and I wrote everything down too.  It needs to be connected when Jess is asleep (otherwise she would pull it out) and then turned off again at around 7.00 p.m., unless she has a coughing fit and then it has to be paused for a while.  "Don’t worry" I said "We will be fine", but inside I was thinking ‘I do hope that nothing happens tonight’.

When Jess had finally gone into a deep sleep Mr H. & I crept upstairs with the large bottle of milk to hang onto the pump and the tubes primed so that no air would be trapped inside.  Hubby is quite an expert at fitting things together so he managed to get the tubing set up on the machine without any difficulty, which was good as I was struggling to make sense of my notes!  Jess was lying on her side, which did not help as I now had to attach the G tube to her Mickey button but I managed to roll her onto her back without waking her and finally we had her attached and the pump running. 

Hubby went home and I went to bed and lay there, almost frightened to go to sleep incase Jess woke up and I did not hear her.  Earlier on I had posted on the SWAN group members page that I was looking after the girls and to wish me luck as I had not used the night pump before.  I now lay in bed looking at some of the replies.  People wishing me good luck and another person offering to help if I got stuck, just what I would have expected from them, they are like extended family.   It felt comforting to know that there were people out there (most of whom I have never met) who would be prepared to offer advice if I needed it. 

Sleep did come and the night was uneventful.  I turned the pump off at 7.00 a.m. and disconnected the G tube, Jess carried on sleeping soundly.  Not so her older sister who climbed into bed with me, wanting to watch a cartoon on TV. 

I was feeling really pleased with myself, I had overcome my fear of the dreaded night pump and had managed to get through the night without any drama.

I picked up my phone again and went back onto the Group Facebook page, feeling quite pleased with myself I had intended to post something to let the others know that I had made it through the night.  What I read made my stomach go into knots.

I may have had an uneventful night but others had not.   It would appear that quite a few SWANS were poorly that night and two in particular had been rushed into hospital after having first to be resuscitated by their parents. 

I noticed that someone had kindly added onto my last post that I was a super Nanny but I did not feel super, to be honest I felt rather ashamed.  There was I getting all puffed up about being able to deal with something as trivial as a night pump and others that night were having to resuscitate their children.  The nearest I have ever come to that was when Emma had a febrile convulsion as a two year old.  She went blue and limp and I thought she had stopped breathing, fortunately a neighbour who was a nurse was able to confirm it was a febrile convulsion and by the time the ambulance arrived Emma had come around.  It only lasted a short time but I can remember for those split seconds thinking that my little girl had died and it is a feeling that I cannot describe but have also never forgotten.  My heart went out to those families and I said silent prayers for their children.

Parents of children with disabilities (diagnosed or otherwise) have to be able to cope with the unexpected.  There is no handbook, no notes to guide them through it.  One day can be good with a trip to the park, the next their biggest nightmare with a trip to the hospital.   My Daughter asked to be taught how to insert an N.G. tube (prior to Jess’s gastrostomy) so that she could replace it when Jess pulled it out, I have always admired her for being able to put aside whatever squeamish feelings she may have had (this is the woman that used to faint as a child if she cut herself) and just get on with it.  The same with the Mickey button.  Both her and her Husband have got the night pump routine off to a fine art they have no time to worry about it or write notes they just get on with it.   So no, I am not a super Nanny at all, all of you parents out there with children who have different needs are the superheroes.  I have nothing but admiration for you. 

Please read the following blogs written by two parents who have undiagnosed children.  One describes the effect that epilepsy has on her family and the other describes the events that took place during their weekend from hell. 

 ODE TO EPILEPSY

13 OCTOBER LAST 36 HOURS 

Oh and by the way, I carefully folded the notes that I had made regarding the pump so that I could refer to them again when needed.  I left them on the sofa Sunday morning whilst I prepared breakfast, when I looked back into the lounge Jess was sitting there quietly eating them!  

NATIONAL POETRY DAY

OTHERS

Some have a smile that’s beaming

Some are very cute

Some may be very vocal

At other times they're mute

Some may walk along beside you

Some just stare into space

But no matter how you see them

They're part of the human race

I know it’s hard to understand

When in a public place

some scream and shout quite suddenly

but it is no disgrace.

They might seem very different

But in some ways they are not

They too need love and friendship

It's not asking for a lot

What they would really like is easy

Something everyone can do

Just accept them as they are

And let them join in too

They are not a ‘special gift from God’

As nice as that may read

They are people just like you

But ones with different needs

WRITTEN BY ANNE HAWKES

TO CELBRATE NATIONAL POETRY DAY 

A VERY SPECIAL PLACE

  

GETTING IN SOME PRACTICE BEFORE STARTING NURSERY

 I started the beginning of last week with some trepidation, as it was the week that Jess was due to start at her SEN nursery.  She is just going for two days a week to start with and build up gradually.   It is was not a necessity that she went as we all help care for her and she is only two years old, but we knew the work that Greenhall Nursery did with children who have different needs. 

It has been said that Jess will develop slowly and then just stop after a period of time (no-one can say when that will be) and then she will be left with whatever developmental stage she has reached at that point.  A very difficult thing to have to come to terms with especially when Jess seems stuck at a certain stage for a while, there is a tendency to think that perhaps that window of opportunity has now closed, but giving in is not our style and therefore we carry on with the physio and the learning through play etc.  This certainly pays off as after a period of not showing any signs of learning any more skills Jess went from crawling to kneeling to standing and now cruising around the furniture in a matter of months!  Going to Greenhall seemed an ideal way of stimulating her even further.

We have been attending Greenhall Nursery with Jess for a couple of hours one day a week as they run a group which they call School for Parents.  This group enables the children to engage in activities and receive physio with parents/carers staying with them.  It gives the children a chance to meet other children and also the adults get to know each other too.  I remember only too well our first visit:

My Daughter Emma (Jess’s Mum) and I arrived at the school one afternoon for our first School for Parents session.  Emma was well known at the school already as Water Babies have been using their hydro pool for a number of years and Emma has been teaching the lessons.  She had since remarked that during that time she never envisaged that she would have a child that would need to attend the school so that afternoon must have been especially difficult for her.   We walked by the main ‘teaching’ area to get to the room we needed, the staff were all very friendly and welcoming and the children all looked happy but all I could see were children with various degrees of disability.  I was filled with such a surge of emotion that it was hard to stop the tears from falling down my cheeks.  Part of me did not want to accept that this is where my Granddaughter would be coming one day, part of me still wanted to believe that the MRI scan showing her underdeveloped brain had all been a terrible mix up and that Jess would develop as she should, but we were here and this was the reality.  Emma felt the same way although we did not discuss it until quite some time after, we could not even speak to each other much during that first session as I think either one of us would have broken down in tears.  Needless to say we did come to terms with it and after a few weeks I found that I really looked forward to our Greenhall sessions.  I no longer saw children with disabilities, I saw CHILDREN, mostly happy children who would sometimes wave as we went past.  I heard them singing and saw them sign and I came to realise that this was a place full of love and people who cared.

Despite the fact that Jessica loved School for Parents, things would be different now at Nursery.  She would be there all day and without any of us being there with her. We were all a bit nervous I think wondering how she would cope and probably more to the point how we would cope!  

We were put at ease from the start, the school are more than happy for parents/carers to remain on site if they are concerned about how their child will be during those early first days.  There is even a designated ‘family room’ to stay in where you can sit in comfort, read a book or watch tv and make yourself a drink, safe in the knowledge that if the child gets too distressed you are close by. 

That first morning we arrived and were shown the group that Jess would be in.  These groups are not governed by age but by ability and needs.  Jess & I were introduced to the teacher and helpers and also to the other children in the group.  Each child had their own chair, as each one was specific to the kind of body support a child might need and one was found for Jess and she joined the others at the table.  I sat behind just watching.  Makaton sign language is used all the time at Greenhall as many children are non-verbal.  The primary colour for that week was Blue and so there were songs with the colour blue in them and we also learnt the Makaton sign for Blue. Jess was loving it and actually so was I!  After a couple of hours (which went by really quickly) I retreated to the Family Room, as it was obvious that Jessica was quite happy.  The staff promised to fetch me if she got upset but also said I could pop back at any time if I wanted to see for myself.  Our first day went by without a hitch and it was quite obvious from Jessica’s smiling face that she had loved it. 

The next day we went back and I stayed to watch Jess help put blue icing on a cake before shoving it into her mouth and then retreated to the family room again to read my book.  A staff member came later to ask if I wanted to join in circle time, which is where the children sit around a circular mat, and there are more songs to sing.  When I got to the room Jess was oblivious to my being there so I kept a low profile at the back and watched.  I wanted to cry all over again, but for a completely different reason this time.  I was watching my Granddaughter happy and joining in as best she could with the songs and the signing. There was no discrimination here, just love and kindness and I felt so happy that Jess was a part of it.

This week I have no longer felt it necessary to stay and Jessica continues to enjoy herself and gets very excited when she is told she is going to nursery.  It is another milestone in her developmental journey being able to interact with others and have new experiences.  I have had an insight into the work that goes on there and I want to be a part of it so I have asked if I can be a volunteer helper on the days that Jess goes (not helping in her group as that would defeat the object).  I would also like to train as a classroom assistant at some point in the future as I feel that helping care for Jess has given me so many skills and insights into children with different needs that I want to put them to good use.

The downside of this story is that just before the start of the Summer holidays it was found that there was a proposal to abolish full time SEN nursery provision in the Staffordshire area.  This will have to be debated by cabinet at some point before being passed so at the moment the outcome is unknown but for Greenhall Nursery and future pupils this would be catastrophic.  The school are obviously determined that this should not go ahead and have set up an online petition which is just one of the many ways people can express their concern.  If you have not signed this already and would like to then the link is http://epetitions.direct.gov.uk/petitions/36488  

UNITED WE STAND- WITH HELP FROM OUR FRIENDS.

Not wanting to be outdone by the London Olympics I have decided to award a few

medals of my own.

A short time ago Jess celebrated her second Birthday.  

 Unlike her older Sister she did not have friends around to play pass the parcel with or just to run around outside in the garden, as at the moment those things are outside of her capabilities.  She did not sit down to enjoy jelly, ice cream and other party food as she is fed through a gastrostomy tube.   Nevertheless she had a family party.  There were balloons provided by Aunty Sarah who has got very good at making dogs and other various things out of the special balloons that you can buy for this purpose.  There was a Birthday banner and of course a Birthday cake.  The nicest thing about the party was the fact that we had all come together to celebrate (as we do for Christmas and other special occasions).   Jess enjoyed every minute, she felt the excitement of her Sister who was also sharing the experience and getting very excited in the process.

TO MY WONDERFUL FAMILY

I am also proud to belong to another very special ‘family’.  None of whom I have ever met in person yet but I feel as if I know a lot of them personally.  This is the SWAN family.  SWAN have an internet support group for families of children who have a Syndrome Without A Name.   This group allows people to share information between other SWAN members, to be able to rant freely about the things that are getting them down in the knowledge that they are communicating with people who have probably had similar experiences and therefore understand what they are going through. 

I was a bit sceptical about joining at first.  My Daughter joined and told me about it and I decided to join up so that I could help her to find information or people in similar positions. 

I once joined another internet group for people with an interest in dogs and training.  At the time I had three and was having a bit of a training problem with two of them. I decided to join to see if anyone could offer advice.  What a big mistake!  .  Anyway I ventured putting my query on line and was totally taken aback by some of the comments received.  They were downright rude and very judgemental.  It was obvious that there was within the group a small clique who would just join forces with each other and gang up on anyone who did not seem to fit their criteria.

I felt very uncomfortable that I should be treated to this ‘cyber bullying’ and promptly left the group (after leaving a few choice words on there first!) and vowed never to join another online group again.

I am so glad that I joined SWAN.  Although opinions may differ at times I have never come across any bad comments etc., and if a comment is taken the wrong way by someone (as can happen with the written word) then the matter is quickly put right and there are no hard feelings.  Everyone tries to help each other.  I have on a few occasions spent an evening worrying about a post where someone’s child has been rushed into hospital or someone is going through a bad time.  I have waited anxiously for a reply to say that everything is now fine again and have felt a surge of relief when it comes.  I know I am not the only one that feels this.  

TO MY SWAN FAMILY

 

Water Babies are a u.k. franchise that specialise in teaching babies to swim from a very early age.   I have to declare a personal interest here as my Daughter is a swimming teacher and assessor for them.  My first Grandchild learnt through them and loves the water and is now a member of a swimming club and can swim a length of the pool unaided.  Her Sister who is the SWAN also goes to Water Babies (I take her and her Mummy is the teacher).  The company have helped Emma raise awareness of children who have no diagnosis and also the benefits of swimming to children with other disabilities.  This has also helped to spread the word about the SWAN Group.

Recently another Swan member appeared on her local radio station to talk about SWAN and the fact that her Daughter swam with Water Babies. Her Water Babies class were raising money for SWAN with a sponsored swim.  The link to her blog is below.  Please take the time to read it and also the radio link within the blog.  You cannot help but hear the enthusiasm in her voice. I HEARD IT ON THE RADIO

TO WATER BABIES

 I am so lucky to have been blessed with a wonderful circle of friends, some I have known for a long time, some I have only just got to know but no matter what the circumstances or the time span I am grateful to each and every one of you for your support when I have needed it most

TO MY DEAR FRIENDS

 And last but by no means least, YOU for reading my blogs.  I hope that you continue to share my journey, your support and comments mean a lot.

TO MY BLOG READERS

 

I would like to finish by sharing a video clip. I am keeping a video diary of the various things that Jess is achieving.  And this from the little girl who they said may never walk …. A TRULY GOLDEN MOMENT…  ps excuse the wobbly camera work, my eyes were a bit watery at the time!

"WHAT MAKES YOU SO SPECIAL?"

If you were taunted with that as a child then my guess is you would feel intimidated.  If you were a child with a disability then you would feel no less intimidated, but depending upon the range of your disabilities you may not be able to just walk away or even be able to think of some remark to throw back.

If you overheard one child say that to another in the street I doubt you would stop and interfere, after all kids say things all the time, it’s a natural part of growing up, toughens them up for later life.

If you overheard a child say that to a child with a disability then even if you did not interfere I am sure you would feel a different reaction for eg. how awful, that child needs to be taught a lesson, I blame it on the parents, society etc.

Yet every single day we use terms to describe people with disabilities like ‘they have special needs’, ‘they go to a special school’, ‘we don’t use the term disabled we prefer to say special’ etc. etc.   Let me try and explain where I am coming from:

Jack and Jill had grown up together, Jack had brown eyes and Jill like most of her friends had blue, it did not seem to make a great deal of difference when they were younger.  Jill started to notice that Jack always seemed to get a lot of fuss made over him because he had brown eyes, he was often referred to as that ‘special little boy with the brown eyes’, people would smile sympathetically at Jack’s parents and say words like ‘It takes special parents to raise a special child’. Jack was sent to a ‘special’ school.  Jill started to resent Jack, she wanted to be thought of as special too.  One day they went up to the top of a hill, everyone thought Jack had fallen, but Jill knew different….

Ok so I am having a bit of fun there, but there is a serious side to this.

You see, I really don’t believe that children are born with discrimination in their genes.  Put a two year old with disabilities with an able bodied two year old and they will play quite happily, make the age gap bigger and they will still play, so what causes this to sometimes change.    Outside influences play a big part and of course the discriminative child grows up to be a discriminate adult and thus the cycle is set. 

Are we unwittingly sending out subliminal messages to society by using these sort of descriptive terms? 

Now I am not saying that young Jack in my story was not special, but what I am saying is that Jill was too.  Jack was a child just as special as Jill but a child who had DIFFERENT NEEDS.  Perhaps if that had been explained to Jill the outcome would have been very different. 

I have two beautiful Grandchildren, one has different needs to the other but they are both very very special.

CARING

National Carers Week has just finished so I apologise for the lateness of this entry but it has been a busy week.    Jess had appointments and also a photo and video shoot for the Sun Newspaper who were doing an article on her with regards to how she enjoys being in the water and learning swimming with Water Babies (her Mum is a Water Babies swimming teacher).  I have included a link to this article for those interested but do not know how long it will be available.

Sun article 

Quite a few blogs have been written already with regards to the caring role of parents with children who have different needs.  My case is slightly different as I am not Jess’s parent but her Grandmother (or Nanny as I prefer to be known) I am registered as her carer as I claim Carers Allowance as Emma works part time and I gave up my full time job to help out, but I am just one of the many ‘carers’ in the family.  Jessica’s Mum & Dad obviously have the main caring role and we are proud of them for the way they cope.  Then there are the other members of the family, these include Ben’s parents, my ex Husband and his partner, my Husband and Emma’s Sister and her Fiancé.  All of us take an active role in helping out not only with Jessica but also her non-SWAN sister who is five.   At Christmas & other special occasions we will all come together as a family, any differences are left behind.  Unusual in this day and age?  Well perhaps it is but I am always thankful that we are able to do this, life really is too short for recriminations and our children always come first.

I love helping to care for Jess and have absolutely no regrets about the decision I made.  Every week brings different challenges and new rewards.

We have been told lots of negative things about Jessica since her having an MRI scan which showed that her brain had not developed as it should have.  We have been told that she may make progress to start with but the gap is always widening as she gets older so she will not catch up, at some point she will just stop learning.  Hearing these things could have had such a negative impact, we may have thought why bother to try and teach her new things if she is going to stop at some point anyway.  Why is there so much negativity from these medical people?  I can understand they do not want to give false hope but then I believe that as long as there is hope there is always something to strive for.  To this end I have decided to keep a video diary of Jessica and the things that she does.  In the early days she would just be on her back staring at the ceiling, now she can crawl, stand whilst holding onto something and a host of other things.  It will be good to be able to look back and see how much she has achieved.

And to get back to the caring topic.  Obviously carers are not just looking after children.  There are many carers out there who look after the elderly and the sick.  In an ideal world we would all be carers, we would care for each other whether related or not, we are all family, we belong to the family of ‘man’.  A pipe dream perhaps, but caring in a broad sense of the word can sometimes just be as simple as something as a smile to make someone feel good and surely we can all manage that.

I have included a short clip of the video I took showing Jessica eating spaghetti for her lunch.  Feeding has always been a problem for her, she has never shown any interest even in taking milk when a baby, hence her being tube fed and now her gastrostomy.  Although she is still only having a small amount of solids at the moment I think you will agree that she is doing very well.  Perhaps in another few months time I can post a video of her eating by herself, we will certainly be aiming for that. 

In the meantime I will keep filming and sharing.   I hope that the video raises a smile and if it does pass it on – (the smile that is)  :-)

WHAT’S IN A NAME?

I have always hated labels when referring to people.  I have often been known to say ‘labels are for tins not people’, but as is usually the case something happens in your life to challenge your views.

I am talking of course about children who do not have a diagnosis. They can have many symptoms but do not know the cause. They do not have a recognised ‘label’.  If you say to someone that a child is undiagnosed it does not really answer the question of what is causing the problems with that child.  It can lead to some people thinking that there can’t be anything really wrong with the child otherwise you would have been given a name for it.  It can even happen that doctors themselves or other people in the medical profession do not really take you or the child seriously when you present them with a list of symptoms but the tests come back negative. 

Filling in forms whether it be for claiming DLA or just holiday insurance can be a minefield – so like it or not, sometimes a label is needed, something that encapsulates all of the various symptoms a child might have and puts them under one category which is recognised.

The meaning of symptom and diagnosis can get confusing so according to Wikipedia (sorry could not lay my hands on my O.E.D.): -

A symptom is a departure from normal function or feeling, which is noticed by a patient, indicating the presence of disease or abnormality
Diagnosis is the identification of the nature and cause of anything

Children and adults may have a long list of symptoms but may never have a diagnosis as to the cause and it is important to keep that in mind.  It could be argued that a recognised term such as SWAN although it sounds nicer, friendlier than undiagnosed basically really means the same thing so why not just use undiagnosed?

What if you were to have all of these symptoms on a regular basis?-

• Exceptional thirst
• Dry mouth
• Frequent urination
• Loss of weight
• Weakness or fatigue
• Blurred vision

Can you imagine having to list off all of those or write them down on a form if there was no recognised collective name for these symptoms and taken separately it could be said that we have all experienced at least one of these symptoms at some point in our lives without any cause for concern.  But say to someone that you have Type 1 Diabetes or put that on your application form and you get instant recognition.

Given that, you can understand why the term ‘undiagnosed’ can sound a little weak.

I believe that the acronym SWAN (syndrome without a name) was originally invented by a member of the medical profession to describe an undiagnosed child. This was then used by the original founder of the SWAN support group (whose grandchild the consultant was referring to) and continues to this day.  Although the group itself is getting more and more recognition thanks to The Genetic Alliance and in particular the hard work done by Lauren Roberts, this is still not a generally recognised name.  

Some people have said that their child’s physiotherapist or consultant etc likes the term SWAN and will use it when referring to their child but to the outside world it generally refers to a bird!

To get back though to the topic under discussion here, I suppose the question I am asking is should SWAN become a globally recognised term and if so would it help?  I believe that some attempts were made once before by the original founder but it was treated then as a bit of a joke by the upper echelon of the medical profession. 

The more I discuss this possibility the more questions come into my mind.

A friend of mine who has a child with a diagnosed disability once told me that it doesn’t matter whether you have a diagnosis or not you still have to fight for everything.  We like to think we live in a balanced and fair society but the truth is we do not.  Shouldn’t we therefore be spending our time, money and resources trying to get all children/adults with different needs accepted by society rather than putting them into categories and inventing names?

On the other hand there are times when a recognised term other than undiagnosed, could clearly have its advantages. 

Like it or not we do feel comforted in some way by ‘labels’.  Just being told that a child is undiagnosed can sound as if what is being said is ‘we don’t know the answer therefore there is nothing more we can do’.  Parents could come out of such a meeting feeling isolated and alone.  On the other hand, if parents are told that their child has no diagnosis but this is a lot more common than people realise and it is known as SWAN then the parents have still been told the same thing but they at least come away with a sense of belonging and knowing that there are others out there.

THE DAY I LOST MY MOJO

Last week started off well.  Middle of the week Jess had started to show signs of wanting to crawl, she had moved tentatively on all fours just a very short way before getting back down and rolling to where she wanted to go, but nevertheless we were quite excited about this.  Went to my physio group as usual and was told that I was progressing really well and would only need one more physio session.  This was music to my ears.

It was during this session that the physiotherapist asked me how my Granddaughter was doing and what was wrong with her.  I started to tell her that she was undiagnosed but her main problem was global developmental delay, I then went on to explain about SWAN and how many children out there are undiagnosed. 

This lady was obviously concerned and said she had never heard of SWAN or that children could be without a diagnosis

 “How old is she?” she asked

 “Nearly two” I replied finding myself faltering a bit,  “But she has just started to try and crawl”.

At this point I started to sob quite uncontrollably.  The poor woman was full of apologies saying she should never have asked, but I want to tell people, I think it is important people are aware.  Eventually I did manage to stop crying and realised that not only was the physiotherapist looking like she wanted to burst into tears, but also another lady in the group was quickly dabbing her eyes with a tissue. 

I don’t know what caused that emotional meltdown, normally I can talk quite happily about Jess and do not mind people asking questions, infact I welcome it as I would rather someone know the facts rather than come to their own conclusions.

I remember Nanny Joan telling me that she had had the same experience some weeks ago in the bank when someone had asked her how Jess was doing.

Sometimes we are caught off guard and raw emotions, which we normally keep well hidden, come flooding to the surface.

Matters seemed to be made worse when that afternoon Emma called me to say that she had received a report from the Educational Psychologist who had been out to assess what needs Jess would require with regards to schooling etc.  This is known as a Statement.  The report basically said that Jess had an average developmental age of between 3 & 6 months.  I imagined how upsetting this must have been for Emma, although we all know that Jess is well behind for her age seeing it written down is hard.  I shed more tears that evening.

Friday evening there was a video posted by Emma on Facebook – you can watch it below.  I watched it in disbelief.  Jess was no longer crawling a tiny way but was going halfway across the room.  The video is especially lovely because if you have the sound on you can hear Jessica’s five year old Sister Natalie shouting encouragement at the end.  Natalie is so good with Jess and I am so proud of her.

This was the tonic we needed.  Once again Jess has given us a timely reminder that despite everyone’s ‘professional’ opinion she is still progressing and she doesn’t care how long it takes.

I have never been quite sure what the term ‘mojo’ actually means, but one thing is for sure I have definitely got it back!

NOW WATCH THE VIDEO BY CLICKING HERE  THEN DOUBLE CLICK PICTURE TO LOAD

A MATTER OF OPINION

Last week I was given two opinions by professional people on how to proceed further with my recovering broken wrist. It had been 5 weeks since my accident and I was feeling fine. Last consultation the week before was good, apparently I was doing very well and could start using my hand again for everyday things slowly at first but gradually building up.  So I was very optimistic.

I asked of the first person if I could learn any specific exercises that would help strengthen my wrist in preparation for being able to pick up Jess again and I also asked about driving as the monthly bus pass I had purchased had only a few days left to run.  I explained what lifting was required.  Unfortunately the advice given was not the optimistic approach I was hoping for.

They were not sure if I should drive due to pulling up the handbrake, perhaps I should leave it a while longer. They did not really want me to think about lifting or even work up to it for another two weeks although they actually preferred three!  I was still supposed to be having plenty of rest during the day in their opinion. I came out feeling very depressed.  I had been doing my physio daily even during the very painful first few weeks and I thought it was paying off.  I have always been in tune with my body, I know that if I try something and it does not feel right it is best to do less for a while, but I really was feeling much stronger.  I started to think it had all been a waste of time but a cup of coffee and a custard tart got me back on track.

By the time I got to the second professional I had already decided what I was going to do as my initial disappointment had now turned to down-right pigheadedness! But I would put the same questions anyway.

This person said I was doing really well.  I decided to mention about driving and was honest and asked if there would be a problem with the handbrake.

 ‘Squeeze my hand with your left one as hard as you can’ they said.  I did.  Once I had released it was declared that my grip was strong so I should have no problem with the hand brake and they could not see any reason not to drive as I had the full range of required movements. ONE BOX TICKED!! 

Now onto the question of lifting.  Again I explained about Jess and how and when I had to lift her and also gave the opinion of the other person.  ‘Don’t try lifting her straight away or anything’ they said ‘or you may experience soft tissue damage’ (first person had mentioned this),

‘ But you can start building up gradually over the next couple of weeks and

 your body will tell you how far to go, you will soon know if you are not ready for certain things yet’. 

How? I asked

‘It will hurt’ was the reply.  ENOUGH SAID.

I came out with a smile. 

Upon reflection both had given me the same sort of advice, i.e. not to rush into things and build up slowly (which I fully intend to do), but the second piece of advice was given in a ‘no nonsense/no frills’ way which is the way I like to deal with things.  It gave me light at the end of the tunnel rather than leaving me thinking this was never going to end and my life would be forever changed.

I suppose I have always had this stubborn streak, once I have made up my mind about something you will find it very hard to persuade me otherwise.  I have never been one to dwell on things for long, perhaps if I had a motto it would be ‘just deal with it’. 

My Mother was just the same.  She was proud of her stubbornness and would often boast about it. 

‘The Grimshaws have always been renowned for their stubborn streak’ she used to say, proud of her Lancashire roots. 

She was also a very strong lady that did not believe in self-pity or dwelling on bad times.  She had a difficult childhood (she would tell me stories when I was young), her Father died when she was 3years old and her Mother was left with four children to bring up on her own. No social services to fall back on then, so they did not have a lot of money.  Her Mother took on two jobs to make ends meet, leaving the eldest Sister in charge of the younger ones.  My Mum said that her Mum would often go without food herself so there would be enough for her children.  She did re-marry years later to the man who I knew as Granddad and things got a little better as he was a miner and was able to bring in a wage, but unfortunately by then the damage caused by overworking and under-eating had been done and my Grandmother died when my Mum was barely out of her teens.  The war years followed which brought hardship of a different kind.  My parents loved each other very much and were not afraid to show it, so when my Dad passed away it was very difficult for my Mum.

Despite all of this she never seemed to complain about life.  She knew exactly what she wanted, was not afraid to go for it and was never afraid to speak her mind.

On my way back I began to think about my Mum and realised that the Grimshaw stubbornness has been handed down.  Not just to me but to my Daughters too.  My Mum passed away some years ago and although she never got to see her second Great-Grandchild, she did get to see her first when she was a baby.  I sometimes tell Natalie about her Great Nanny Irene and she has seen photos of her.

Having a child with a disability is never easy.  Having a child with an undiagnosed disability also brings a new set of problems to overcome as there is nothing to compare with, no guidelines.  There is no blueprint for the future; every day has to be taken as it comes.

I have never heard Emma complaining about how things are with regards to Jess or feeling sorry for herself.  I am sure there are days when she feels like it and who could blame her?  On the other hand I have been there when she has stood her ground with the medical profession, especially in the early days when these people refused to take her seriously.  I have stood by proudly knowing that if the chips are down she is a force to be reckoned with when it comes to the welfare of her family.

In my mind on such occasions I can see my Mum with a knowing smile, the stubbornness of the Grimshaws strikes again!

TEARS OF HAPPINESS WHEN MEETING HER GREAT GRANDDAUGHTER FOR THE FIRST TIME

A FEW MONTHS LATER SHARING A PRIVATE JOKE TOGETHER!

I am writing this post as part of the Define Normal blog challenge  http://www.justbringthechocolate.com/define-normal/