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