Sunday, 19 January 2014

THE FEATHER

 
feather
 
For the past few days a small white feather has been stuck fast on the grass of our front lawn. Despite gale force winds and heavy rain it has remained in place. When I first saw this it reminded me of a lady I used to work with. One day she ran out of the office door without warning to catch a feather she had seen falling past the front window. She came in with the feather and put it carefully in her desk drawer. She said that she believed this was a sign that an angel was watching over her. So steadfast was this belief that despite the fact that I had found the whole thing rather bemusing I did nothing to let her know that. The feather remained in her drawer up until the day she left to work elsewhere.

A really significant event happened the other day with Jess. Jess is still non-verbal but like most families with such children we are so used to her little ways that we know what she wants without her having to say anything. This of course is no problem so long as she is with a family member who understands, but the bigger picture always has to be looked at if Jess is to take her place in society. Makaton sign language is used at nursery and some of the children there communicate very well with it, but for Jess it is difficult as she has not yet got the fine motor skills needed in her hands and fingers. Jess has Global Developmental Delay and therefore it is not known how much she can progress, but progress she does albeit at a slower pace. We are convinced too that she knows so much more than she is able to convey at the moment and this has been backed up by her Nursery. There is a lot going on inside her head, it is just a matter of being able to help her to express this.

One of the things we have come across is something called PECS. This stands for Picture Exchange Communication System. The following is taken from the website http://www.communicationmatters.org.uk/page/pecs

“Originally devised to teach people with autism the basic concept of communication, the system is built on established psychological principles (ABA Applied Behaviour Analysis) which include shaping and reinforcement.
Trained facilitators gradually shape the individual’s impulse to reach for a desired object into the communication act of giving a symbol to another person. That person gives them the desired object in return. People with autism or profound learning difficulties benefit from experiencing communication made concrete in this way.
However, the PECS system is not necessary or appropriate for people who already have the desire and motivation to interact. PECs is a total system for developing full communication in six stages. Unfortunately many people introduced to this system are never moved much beyond this basic stage.”

PECS has been tried with Jessica at nursery but it has been difficult to find a suitable ‘motivator’ ie something that she was really interested enough in to get used to the idea of using the picture to learn to ‘exchange’.
For a time now upon coming home from her nursery school Jessica walks straight into the kitchen and looks for her cup at the sink signifying that she wants a drink. Her cup is often on the draining board after being washed that morning and she has memorised that fact. This seemed like a good motivator, she clearly wants the drink. We decided to test the theory so I printed a picture of her cup and before she came home from nursery fixed this by the sink in the kitchen and put her cup out of sight. Before I left to pick her up I made sure that my small camcorder was within easy reach so I could film the results. This is what happened:-
 
 




As you can see not only did Jess look around for the cup first and then saw the picture, she took the picture and then handed it to me (after a quick walk looking at it), she then waited for her drink, proof to us that she did not just pick the picture up at random otherwise she would have just wondered back out of the kitchen. She recognised the picture being that of the cup and understood enough of what was being said to her so that she knew the drink would be forthcoming. Later on I attached the picture to the front of the kitchen door as we keep that closed usually once Jessica is home and on another occasion she went to it and took it off the door and came towards me. I was then able to offer her a drink again.

We have also noticed that when Jess has her coat put on she has started to walk to the front door and sometimes will reach for the handle. She obviously now associates having her coat on with going out. Our next thing will be to put a picture of a car on the door just before going out so that she can have the word repeated to her and the picture pointed out, we could also include a photo of nursery too if that is where she is going, but the important thing is to take things slowly to give her time to take things in and not to confuse her with too much information all at once.

Although I have given a brief outline of PECS we have not made a conscious decision to use that system of communication but rather taking some of the ideas from it and also using some of our own. The important thing is that we are helping Jess to understand the world around her and that we use something simple such as picture cards which can also be used by others who help care for her.

We are still hoping that one day she will be able to use her voice, but this is a start and we can develop on it slowly. Pictures provide the visual aid and if Jess learns to exchange the picture for the desired object then that is good, but also by repeating what a picture represents it re-enforces the sound.

Whatever form communication comes in it is vital in my opinion. Behavioural problems in children and adults (not just those with different needs) are often due to the person not being able to make it’s needs or feelings understood. Imagine being in a room full of people and you do not speak their language. You need help, you gesticulate, you may try and mime your needs but they look at you and then carry on talking to each other. Eventually frustration takes over and you start to feel angry, you may feel the need to take hold of someone firmly in an effort to try and make them understand or you might throw something on the floor or scream loudly to attract attention. If you can imagine that situation then you are part way to understanding what it must be like for a person with different needs who is not able to communicate.

As for the feather which I mentioned at the beginning, this does not represent to me that a guardian angel is near but reminds me that you should always hold fast no matter what turbulences life throws at you.

















Thursday, 9 January 2014

WALKING INTO THE FUTURE (with a quick glance back)


The days go by so quickly nowadays (or is it just me getting old!) that it is easy to think that nothing much has happened in the past twelve months.  But as you will see from my brief resume’ that follows, quite a few things have taken place. 

We are so fortunate in the fact that Jess, apart from her global developmental delay, has no other major health issues.  Many families that we know of have to deal with epilepsy and other problems as well as GDD.  Genetic testing to try and find a reason for the developmental delay is still going on in the background  but I think it is fair to say it has become less of an importance as time goes on.

The biggest ‘WOW’ factor last year has to be Jess walking.  This only happened towards the end of the year but just in time for her Bridesmaid debut in August.  I can remember being told a while back by one of her physiotherapists that she thought Jess would eventually be able to walk one day but would probably always need some form of ‘aid’ to assist her.  At the time I felt really pleased by that, and who cares if she needed a walking frame or the like.  Well Jess blew that theory out of the water!  Her progress was slow at first and she was a little lacking in confidence but how that has changed in the last few months.  She is now into everything, walking from room to room at home and in nursery.  The cat can no longer seek refuge by going into another room, going up and down stairs now involves having to negotiate various gates and everything else has had to be moved higher up or locked away as Jess has a surprisingly long reach.  Although she still needs her wheelchair for longer distances she  would rather be walking, especially around the supermarket where she can rearrange all the shelves!

Now for a quick look at 2013. 

JANUARY:  I started off the year with chicken pox but as you can see I was not very poorly.  Nanny Anne & I had lots of fun with play dough.

Untitled 0 00 29-14

FEBRUARY: My wheelchair arrived and I loved it

Jess in wheelchair

MARCH
I now love playing with different things, even the washing basket is fun!






MAY
This was a good month as we received news that my application for a special trike had been approved by a charity.  I really hope it comes in time for my Birthday.
Meanwhile I had fun at a local town park and met some very special friends:



Meeting Mickey, Minnie & Woodland Fairy 0 00 09-28


JUNE:  

playing in the conservatory
PLAYING IN THE CONSERVATORY
Watching the rain 0 00 00-01
IT WAS A WET MONTH BUT I LOVE WATCHING THE RAIN






looking at book
NOW TIME FOR A QUICK READ

My Mummy organised a Swimathon and my Sister and her friends took part, they raised lots of money for Newlife Foundation to help offset the cost of the special bed they are providing for me


swimathon


JULY
YAY I am now three years old!  And my bike arrived in time for my Birthday


bike in garden 2 0 00 00-01


AUGUST:
My Auntie Sarah & Uncle Paul got married and my Sister, Mummy and I were bridesmaids. I was able to walk down the aisle holding onto my Mummy’s hand.  Nanny Anne could not stop crying but it was because she was so happy



bridesmaid

SEPTEMBER:
My special new bed arrived and I love it


New bed



OCTOBER:  
I am getting into lots of mischief now:


and I love to watch my big Sister playing:






NOVEMBER:
This month belonged to my Sister Natalie who won a very special award in recognition of the swimathon she took part in. 


My little star


DECEMBER:
I had a lovely Christmas with all of my family.  My Sister also had her 7th Birthday this month too.  I played the part of Mummy Pig in my Nursery Christmas play.



Christmas Day 2013
              
Christmas 2013 



Jess with bubble tube



Now I look back we really did have a busy 2013 and it is lovely to see how much Jess has achieved.

Although it is good to look back and to take stock I believe it is more important to look to the future and to keep on pushing those boundaries.  

Who knows what new challenges lie ahead but one thing is certain, I’ll be sure to keep you posted.

HAVE A VERY HAPPY AND PEACEFUL 2014 EVERYONE AND THANK YOU FOR ALL YOUR SUPPORT DURING 2013.  

I leave you with a quote which I have taken from Jess's nursery calendar:-

"The best thing about memories is making them"