THE FIREGUARD

Taking a rare break she sat down with her cup of tea and found herself staring at the fireguard.  How she hated that piece of equipment.  To her that’s just what it was EQUIPMENT.  You could not call it furniture.  Furniture was something nice and pleasing to the eye, something you choose to put into a room.  This was equipment, plain and functional, a permanent fixture, not something you could throw out when you got bored of it or when fashions changed.

When you have children your environment changes as they develop.  The once cosy lounge shared by you and your partner is no longer the love nest it used to be.  Baby paraphernalia at first, the changing mat, baby box and baby chair hide the furniture.  Later the toys start to appear, building blocks and crayons found shoved down the sofa.  Once a child starts to move around, the room is looked at from a safety point of view.  You get down on the floor as the books suggest and view everything through the eyes of your now mobile toddler.  Sockets now have safety plugs, wires are concealed, corners made safer with plastic covers, ornaments are either discarded or raised up high, stairs are gated and the all important fireguard is fixed.

She remembered how much she had liked the feature fireplace when they first viewed the house.  It gave the room a cosy feel especially as it also housed the modern gas fire which was made to look like an old-fashioned log fire when lit.  They had spent many a happy cold winter evening in front of that fire.

When their Daughter was born the fireguard was not the enemy.  Infact it was viewed upon as being a very important part of the lounge as they could still sit in front of that fire without worry.  Later when the news came that their Daughter had been born with an underdeveloped brain and would forever need to be kept in a safe environment the fireguard became a constant reminder of the challenges they faced.

They had been through a lot over the years and remarkably their Daughter (now 10 years old) had developed well but mentally she was still a young child and had no understanding of danger.  The world to her was a giant playground.  They loved her so much and would not be without her but sometimes life seemed so hard.

She took another sip from the now cold tea.  It was almost Christmas but the only thing in that lounge that suggested it might be the Festive Season was the tinsel draped around the mirror.  They could not have a tree in there it would not be safe.  A friend had been round for coffee a few days ago and had remarked upon the lack of Christmas decoration.

“Wrap some tinsel around that fireguard,” she suggested, “it will make a nice feature”.

When she was told that the Daughter would only try and eat it the friend’s reply was

“Well you will just have to teach her not too!”

Those words had stuck with her and reminded her of just how little some people understand.  If only it was just that simple. 

So whilst other families went through that ritual of being able to get rid of the stair gates and fireguards which subconsciously made the statement “see how our child is becoming independent” she felt stuck in a time warp, forever reminded of how things were not going to be.

A single tear made little rings into the half drank tea as it silently rolled down her cheek and into the cup.  She dabbed her eye and looked up at the clock.  No time for brooding, the taxi would soon be arriving bringing her Daughter from school. Life goes on.

She got up, straightened her hair in the mirror above the fireplace and gave the fireguard a swift kick before turning to leave the room.

***********************************

AUTHORS NOTE:  THIS STORY IS FICTIONAL BUT THE FEELINGS I WANTED TO CONVEY ARE REAL TO MANY PEOPLE WHO HAVE CHILDREN WITH DIFFERENT NEEDS.  WHEN MY DAUGHTER TOLD ME ONCE THAT SHE LONGED FOR A LOUNGE WITHOUT A FIREGUARD AT FIRST I DID NOT UNDERSTAND.  I HOPE THAT AFTER READING THIS SHE KNOWS THAT NOW I THINK I DO.

CHANGES AND PROGRESS

 
I took a bit of a break from blogging recently.  Not because I have had nothing to write about (I had plenty in fact) but I have had a lot of things going on.  Now I’m back at the keyboard.  So, are you sitting comfortably?  ……..

One of the changes that have taken place has been me being able to work at Jess’s nursery.  I have been lucky enough to get a job as a Dinnertime Supervisor (Dinner Lady to you and me!) this is only temporary at the moment as everything relies on funding etc., but it is very enjoyable.  Another thing I have been enjoying doing is Teaching Assistant.  I have just been doing one day a week for a few weeks. Although I help out as a volunteer when required and have been doing this for some time, this is normally just for a couple of hours mainly in the hydro pool.  Being in school every day for the past few weeks working alongside different members of staff and being allowed in that inner sanctum known as the ‘staff room’  has made me realise that these teachers and teaching assistants work damned hard!  I should add quickly that I never thought for one moment that they didn’t but I just never appreciated the amount of work that goes on behind the scenes.  I give below a few examples:

Sports Day:  Like every other school in the country Greenhall had their annual Sports Day a few weeks ago.  EVERY CHILD took part in an event, regardless of the severity of their disability.  These ranged from a relay race which started with a child crawling to another child who then had to work a switch toy to get it over the finishing line.  A crawling race,  skittles (a child in their wheelchair pushed a ball down a tube to see how many skittles could be knocked down at the bottom) and many others.  Each child in the school had been considered and ingenious events created so that they could all take part. All of the children had a helper with them and they worked together. Regardless of where they came in the event they were all winners for taking part and all received a certificate confirming this.  Jess was in the same event as she was last year, she had to walk/run to a bag on the floor, pick it up then keep going down the track picking up various objects and putting them in her bag until she got to the finish line.  Last year she had just started to walk and had to be helped with each step to finish the course.  This year her helper had to keep stopping her to get her to put the things into the bag as she just wanted to run down the playground on her own!  Now that’s progress.

School Picnic:  Greenhall said a sad goodbye to Mrs Karen Milligan at the end of term who has been the head teacher for many years.  Karen has always been dedicated to getting the very best for the school and the children and she will be missed.  A farewell day trip to Stafford Park was organised, complete with picnic lunch.  Victoria Park to give it it’s proper title is not a small area with a few swings and slides.  It covers an area of 4.95 acres and has lots of fun activities, including a water area which has fountains that squirt in all directions for the children to run through and a large sandy play area.  Transporting all of the children and their helpers (one for each child) required hiring a large yellow school bus.  Before the children even got aboard a car seat for each child had to be fitted, plus wheelchairs, pushchairs, children’s bags, various medical equipment and a host of other things (including the all important picnic) essential to the children’s well being were loaded on. It was like a military operation but well worth it to hear the children’s excited gasps when they saw the big bus waiting for them outside the school.   Once at our destination all of the equipment had to be unloaded and the children were each assigned to a helper for the day.  We could disperse into small groups so that we could explore the park and meet up again at the bandstand for our shared picnic.  It was a fabulous day.  The weather was warm and sunny and a letter had gone home to parents asking them to pack a change of clothes etc so that the children could play in the water area if they wanted to.  Jess was with her helper and when I caught up with her in the fountains, they were both having a fantastic time.  At lunchtime we all sat in the shade around the bandstand and the children  had an assortment of lovely sandwiches to eat, sausage rolls, cakes and crisps.  Thankfully there were no medical emergencies so the school nurse was able to enjoy the visit too!  A lot of organisation and planning had gone into organising this day out.

Having fun in the sun

Jess is now a very mischievous and strong willed four year old.  I could go on to list all the differences between her and a typical four year old but I am not going to because I don’t think that this serves any useful purpose.  Suffice to say there are quite a few, but Jess is who she is and we love her for it.  We are so grateful, things could be a lot worse. 

I loved my cake, it had a photo of Iggle Piggle & me on it

I have two very talented Granddaughters, especially when it comes to schoolwork.  Jessica’s Sister Natalie has received a glowing report from school, A’s or B’s in all subjects and comments such as “Natalie is a pleasure to teach and is eager to learn”.  Jess was awarded Pupil Of the Month in her class for making new sounds and being happy in new activities.

My pupil of the month award makes everyone very proud

Both things are very different, but both are just as important and we are very proud of the girls.

I am also proud of my Daughter Sarah who now has a Diploma of Higher Education. We went to her Graduation Day recently, suffice to say I got rather teary!  She has worked hard for this whilst furthering her career. 

Sarah is also carrying our third Granddaughter (scan results indicate a girl).  Natalie is very excited about having a cousin.  The Mum of a boy in Jessica's nursery group recently took her new baby into class to show the children how the baby liked having a bath. The children then went on to bath baby dolls.   I was a little concerned upon hearing this as Jess had bitten some of the fingers off her baby doll and like most of her toys carried it around in her mouth.  I needn’t have worried, nursery have some lovely photos of Jess with the baby, she is looking into the baby’s face and smiling.  They said she was really gentle.  More progress.  Jess is interacting more with others now, she is starting to hold eye contact for longer and will smile or laugh in response to people or their actions.  Something just did not do before.

Jessica is also babbling a lot now, as mentioned on her certificate. It's as if she is really trying to talk to you sometimes. We have been waiting for this and hope that it will lead to her being able to speak one day.  Communication is such an important thing. 

Learning to cope with change is another thing mentioned on the certificate. This has taken a while but slowly she is starting to adapt to new things.  In the past taking her to something like another child’s Birthday Partyor even changing classrooms at nursery would stress her and cause her to either cry or have a tantrum. She still gets bothered about some things, but she is making progress.

Like a lot of children with learning difficulties etc., Jess likes a routine and things to happen in a certain order.  I presume this gives her some comfort and security.  As Jessica gets older the frustration she feels manifests itself in the form of tantrums.  I witnessed this in her class as I was helping out one morning.  After snack time the children have play and during nice weather have been going outside.  This particular morning the routine was changed slightly as teacher wanted to read a story about hide and seek before play as she had ‘hidden’ some books for them to find in the sensory garden.  Snack time over and Jess made her way to the door which leads to the play area.  It was explained slowly & carefully to her that the class were going to have a story first then go outside.  She may be non verbal but she understands a lot and upon realising that there was a change to the normal routine she started to make loud noises and to stamp her feet!  She was led (still protesting) into the room for the story and joined the circle on the floor with the others but refused to listen and actually turned her back to everyone at one point.  At the end of the story the teacher carried on with the hide and seek theme by putting a small blanket over the children’s head in turn pretending she could not see them until the child pulled the blanket off excitedly.  Jess loves this game and when she realised her turn was coming up she turned herself back into the circle and eagerly awaited the blanket.  After everyone had had a turn they all went outside as promised and Jessica was happy again. 

Teaching and caring for a child like Jessica takes a lot of patience and understanding, it is hard work both mentally and physically.  Sometimes it can be a long time before you see any progress, and even then it may only be something small, but when that progress is made, no matter how small it may seem , it is a huge breakthrough.  When you have a child with a disability you can forget the good parenting guides, the Jo Frost techniques, you learn as you go along, you take each day as it comes and you learn to adapt as you never know what the next day will bring. On the other hand, the feeling that you get seeing that child accomplish something that it had not been able to do before (no matter how small) is beyond words and makes all the hard work, the frustration etc., seem worthwhile.

AN ACT OF KINDNESS

Today was a teacher training day at Jess’s nursery so this meant that we were able to spend the day together before picking Natalie up from school later in the afternoon.  It was a lovely sunny morning and I had a present to buy so we decided to go to the Trentham Estate Staffordshire to have a look around the shops there.  

Once in her wheelchair and out in the sunshine Jess was happy and smiling and taking in all of the sights and smells.  We went into the candle shop with it’s heavy scent of hundreds of different perfumed candles, they had a toy train running around a track in the roof eaves and Jess was fascinated and got really excited when it came over her head.  Music was playing as you went around the village and Jess was bobbing from side to side and laughing.

We went into a shop called The Natural World which had a collection of all sorts of interesting things, I made a small purchase and when I went to pay Jess’s eyes fell upon a shelf containing electric perpetual motion desktoys.  Her face lit up and she laughed and laughed, the man behind the counter laughed too. 

We came out and eventually came to the large garden centre.  This was another sensory playground as far as Jess was concerned.  There were big ceiling fans which are firm favourites, a display of sun catchers and wind chimes, and a large water feature which also had twinkling lights.  Jess was also very interested in the fine pottery on display but I decided it was best to give that a wide berth!

I decided that I needed to go back to The Natural World for another item before going home.  I took my purchase to the counter again and turned Jess’s wheelchair so that she could see the desk toys again.  She was not disappointed and was shrieking with delight and clapping.  The man behind the counter commented upon how happy she was and then did something amazing.  He went over to the display and asked if I would like one for Jess free of charge!  I was taken aback.  “well if you are sure” I said, still not really believing what I had heard.  We decided upon the one which we thought Jess liked best and this kind man got a new one from off the shelf and even included a battery so that we could start using it when we got home.  He explained that he had a disabled Daughter and knew how good it was to see them happy.  I felt so overcome with emotion that although I thanked him it hardly seemed enough.  I came out of the shop in a bit of a hurry as I could feel the tears starting to fall.

When we got home I assembled the toy and this was the result:-

Another thing Jess has been doing just lately is putting her tongue out between her teeth and making a noise.  She will try and copy someone when they are talking or singing.  This is a big breakthrough.  We have been told that Jess may never be able to talk but I think just like the other things she was not expected to do this will come in time.

Bad things do happen in this world but there is also a lot of goodness too.  If ever you are in Trentham Shopping Village then please call into The Natural World gift shop.  I don’t know if the man in there will get to see this blog but just incase he does be assured you have made one little girl (and her Nanny) very happy – THANK YOU

IF YOU'RE HAPPY AND YOU KNOW IT

 
 

 
Ever since I watched the fabulous SWAN Video I have had the Happy Song running through my head at various times of the day. I love the concept behind the video. Disability in all of it’s many forms is often portrayed as something sad and yet the thing that often strikes people most upon meeting Jess for the first time is how happy she is. Sometimes people have commented in almost surprise  ‘she seems very happy despite everything’. Of course Jess is happy, well 90% of the time anyway. She is not aware that she is any different.  The same can be said for her other SWAN friends as the video clearly shows (click on the words SWAN Video above if you have not seen this yet and scroll down the page)

So with all of this happiness going on what have we possibly got to complain about?

Happiness also worked against Jess in the early days. We knew that she was not developing as she should. She would not feed and was losing weight rapidly and yet through all of this she remained placid and happy still managing to respond to a friendly voice with a smile. Her parents were at their wits end trying to get the medical profession to take them seriously but it was like banging their heads up against a brick wall. I remember well the day that we sat in the children’s ward of the hospital waiting to see a consultant. Eventually his assistant came to see us and after listening to the various things that were concerning us about Jess she dismissed it all by saying that there couldn’t be much wrong with her as she seemed quite happy! Of course this woman was missing the point completely. The very fact that Jess was happy was a concern. She should have been screaming with hunger for one thing. Due to my Daughter’s calm, but effective insistence, routine tests were done but all came back negative. My Daughter was made to feel like an over anxious Mother.  The MRI scan which they had to pay for privately was to show that Jess was born with an underdeveloped brain, the reason for this is still a mystery.

We are fortunate, insofar as we know Jess does not have any serious medical issues. She has widespread Global Developmental Delay, she is still non verbal and she is fed through a gastrostomy button, but she is not on any medication and she only has to see a consultant a couple of times a year. But, and this is a big BUT, she may be nearly four years old but she is way below that in her mental development. She does not understand danger, if she was to fall off something and hurt herself she would go back to climb on it again later, she has to be watched constantly. She tries to chew everything from skirting boards to radiators (sensory thing) and if left unattended would chew electric cables too. She needs constant supervision and probably will for many years to come. She does not seem to need as much sleep as other children and sometimes wakes up in the night for no apparent reason but is still happy.  Yet, despite these issues, because she does not have a ‘label’ that professionals can recognise, because she is a bit of a mystery, trying to get help or special equipment can be a nightmare. Once again her parents are often made to feel as if they are over reacting, after all ‘she is such a happy little girl there can’t be much wrong’.

Yes it is a mystery as to what caused Jess’s brain to stop developing whilst she was in the womb. Although Jess is currently taking part in a genetic study where samples of her DNA are tested using the latest microarray and sequencing methods she may never get a diagnosis. The reason behind Undiagnosed Children’s Day is to make people aware – PEOPLE IN THE MEDICAL PROFESSION AND SOCIAL SERVICES THIS MEANS YOU TOO– that just because a child is presented as not having a diagnosis this does not mean that they should not be taken seriously. Care & support should not begin with a diagnosis, it should begin when it is needed.

Undiagnosed children still need help, their parents still need support and understanding. Our slogan last year was UNDIAGNOSED BUT NOT INVISIBLE – I think that says it all so it’s a mystery to me why we are still being ignored in certain circles. 

If you, or you know someone who has a child with an undiagnosed condition then help is at hand.  We belong to a fantastic support group called SWAN (Syndrome Without A Name) UK.  If you would like to help keep this support going then donations can also be made through the site.  Thank you.

HAPPY UNDIAGNOSED CHILDRENS DAY EVERYONE!

 

THE SLEEPOVER

 
 

GOOD MORNING NANNY

 
 
At the weekend I had a sleep over at my Daughter’s house to look after my two Granddaughters. It was my Daughter & Son In Law’s Wedding Anniversary and they were having a rare childfree night away together.

Although there are bedrooms to spare at my house because Jess has to sleep in her specially adapted bed I have to go and sleep there. Mr. H. comes with me and we all have tea together, then he leaves later on having helped me get the children bathed and in bed. We have two dogs which we don’t want to leave on their own all night.

The reasons for Jess needing this bed have been written about before but basically it is to keep her safe. Jess will sometimes wake up in the early hours of the morning (for no apparent reason) and will happily play in her bed before eventually falling back to sleep again. If she had an ordinary bed she would just get out of it and try and walk around and as she has absolutely no sense of danger this could be disastrous. Jess is also pump fed throughout the night and therefore needs to be in a secure bed otherwise she would be rolling out pulling over her pump and stand and probably pulling out her gastrostomy Mic-key button. At least if she does wake up, although her feeding tube has to be detached her parents know that they can go back to bed safe in the knowledge that she will not come to any harm and will eventually lie back down and go back to sleep whereupon they can re -attach the feeding tube if necessary.

This is not the first time I have slept over and so far Jess has been good to her Nanny and slept through the night although I must admit to always feeling some apprehension – what if I fall into a deep sleep and don’t hear her if she wakes or the pump alarm goes off?

Mr H. and I pick the girls up from Nanny Joans later that afternoon. Nanny and Granddad had just got back from taking them to a local nature reserve.  Jess looked reasurringly tired. Once we got them back to their house it was time to prepare tea for us and then get Jess on her pump for her 6.00 o’clock feed. Mummy had left instructions that it was bath night too.

Bath night with the girls is messy. Messy and noisy. Jessica loves being in the water be it a bath or a swimming pool, it is all the same to her and means lots of splashing and lots of excited babbling. Natalie also loves bathtime it also means splashing and non-stop talking. I bathed the girls together after listening carefully to Natalie’s instructions about how much water I have to put in. Apparently last time I had not put enough in (Nanny being over cautious again). Finally after lots of splashing (I looked like I was about to enter a wet T-shirt competition) and lots of excited shrieking I declared bath time officially over. I seem to remember bath time with my own girls having a calming affect on them but not my Granddaughters. Whilst trying to stop Jess from crawling off with only half a nappy attached I was also trying to get Natalie to understand that dancing in front of the mirror in her Birthday suit was not behaviour becoming of a young lady! I finally managed to get the nappy on and Granddad got Jess ready for bed whilst I was drying Natalie’s hair. 

“Does she go inside this growbag?” Mr H. shouted across the landing. A baby sleeping bag is not something he is used to.

Finally both children are in bed and whilst Granddad reads Natalie a story I set about sorting out the bathroom etc. After goodnight kisses Natalie settles down and we close her bedroom door. I look in on Jess and she is sound asleep.

After Mr H. has gone home I settle in front of the tv for an hour before preparing Jess’s night feed. I liken this to a three-stage operation.

Stage 1. Set the pump to the correct dosage and rate. Prepare the milk by attaching 'giving set' to the pump. The giving set are the tubes that the milk flows through. A large bottle of high calorie milk feed is hung onto a stand which the pump is then attached to. One end of the giving set is attached to the bottle of milk and then is fed through the pump and then primed so that the milk goes to the end of the tube ready for it to be inserted into Jess’s gastrostomy Mic-key button.

Stage 2. Attached the feeding tube to the Mic-key button making sure it is locked in place.

Stage 3. Turn on the pump, make sure that everything is working correctly.

So at 10.00 p.m. I start to get Jess’s pump set up ready for her to go on her milk at 10.15. I go upstairs. The pump is already attached to the stand now and the milk primed in the feeding tube ready to be attached to Jess’s Mic-key button. Jess is fast asleep curled up in a ball at the bottom of her bed. This seems to be a favourite sleeping position but is no good for feeding. Using the light from the landing to see I carefully lift her back up the bed (which is raised slightly at the top) and put her onto her back so that I can start to attach her feeding tube. Jess stirs slightly but does not wake up. Great – Stage 1 is complete.

I am about to go to Stage 2 and start undoing the zip on her sleeping bag when Jess rolls over onto her side and draws up her knees into a classic foetal position. Now I have to do Stage 1 again! This time Jess protests a little at being disturbed and I honestly think that she is going to wake up. I stand stock still after putting her back up the bed and onto her back, I can feel my heart beating in my chest.
I carefully lift up her pyjama top and pull off the dust cap on the button. Jess stirs again and starts to roll over but I manage to push her gently back mid roll. Again I am standing like a statue poised with feeding tube in one hand and trying not to even breath too loud incase it disturbs her!

Eventually I complete Stage 2 and allow myself a sigh of relief. As I am carefully bringing down the zip on the sleeping bag so as not to trap the feeding tube Jess also lets out a sigh and promptly rolls onto her side again in foetal position. I now come to the conclusion that this is going to have to do, I dare not move her again as I am sure she would wake up next time. Satisfied that her tube is not twisted and there is enough slack from pump to button to allow for movement I go straight for Stage 3 turning on the pump.
I wait in the doorway for a short time just to check that everything is o.k then carefully come back downstairs.

11.45 I am going to bed. So far everything has been quiet. I go upstairs and take a quick peep at the girls. Nat is fast asleep. Jess is fast asleep and the pump is humming rhythmically. I notice that Jess is dreaming as her mouth is twitching slightly, her dummy (which she is only allowed at night) is lying by her cheek. I smile to myself. She looks so serene. I am just about to turn away and get ready for bed when Jess turns over again and presses her cheek straight onto her dummy! 

The mouth stops twitching and the eyes start to flutter open a little. A small groan escapes from her mouth. Every second counts now. Quickly I wrestle with the safety catches on the bed door, the noise bringing Jess ever closer back to reality. There is no time to be lost, I roll her onto her back with one hand and insert the dummy with lightening speed with the other. After a few vigorous sucks all is well again, the eyes are now shut tight and the breathing is once more relaxed. I go quickly to bed feeling like a footballer that has just saved the team from disaster by scoring a last minute goal.

I am happy to report that Jess slept all through the night without incident. I did wake with a start at one point though as I felt something land next to me. Had I made sure that all the doors were locked? - I was relieved to see that it was only Daisy the cat!

The next morning Natalie came into the bedroom at 7.00 o’clock and snuggled up next to me. We talked about all the things that matter to a seven year old, such as the Easter Bunny (Natalie thinks he must live with Santa at the North Pole otherwise the Easter eggs would melt!), we discussed our favourite school dinners, our favourite vegetables and of course the best app you can get on the Ipad which according to Natalie is Secret Diary because you open it with a password and can then write things in it.
Later on she did show me what she had written in her secret diary – the entry for Friday was:-

“Tomorrow I am stopping at Nanny Joans and then Nanny Anne is coming to sleepover. I love them both very much”

I turned away quickly as I felt my eyes sting with tears and I know that Nanny Joan would have been the same too.
I love being a Nan.
 

Secret diary

Something else came to mind that night as I was lying in bed. All was quiet apart from the low hum of the feeding pump coming from Jessica’s room as it switched itself on for a time and then quiet again until the next cycle. It struck me how normal this routine had become. I can remember the first time that I fed Jess whilst on my own using her NG tube before her gastrostomy. In my blog I recall dancing around the room because I had mastered the procedure. Then there was the first time I fed her alone after her gastrostomy. Learning how to set up the pump and the giving set. It all seemed so complicated and I was terrified that I would do something wrong. Now it is all so second nature.

Although without her special milk formula Jess would not be here today I used to see the artificial feeding as a constant reminder that Jess was not able to enjoy solid food like her Sister. Now I have to admit that I do not think about it much at all. Jess does have small amounts of solid food but nowhere near enough as yet to warrant taking her off her milk. Yes, perhaps in the future she will and I would love to see her tuck into a roast dinner (Natalie’s favourite) but for now I know she is getting the nourishment she needs and that is what matters. She is no longer the thin little baby that had dropped off the weight chart. She is a healthy toddler now able to walk and run around and we know that her fortified milk has made these things possible.

Shh don't tell my Sister I have climbed into her bed!

We worry about what a child will become tomorrow, yet we forget that he is someone today. ~Stacia Tauscher

A MOTHER LIKE YOU

As I can’t talk yet I can’t tell you myself

but until that day comes I’ve got Nanny to help

I want people to know all the things that you do

and how glad that I am for a Mother like you

When I was born you calmly accepted

things were not going to be quite as expected

the doctors they said there would be things I won’t do

but they did not account for a Mother like you

They could not dismiss you,  try as they might,

you stood your ground fast and fought for my rights.

Those doctors in white and those nurses in blue

now have every respect for a Mother like you.

Some days you look tired it shows in your eyes.

I can be demanding, I just don’t realise

that Mummies and Daddies need their rest too,

but you never complain, not a Mother like you.

I know that I still have a long way to go

but I know with your help those doctors I’ll show

that there is still a lot yet that I can do,

because I have the help of a Mother like you.

So with Nanny’s words I just want to say,

I wish you the very best Mothers Day.

Daddy, don’t feel left out, I love you loads too

but for today Mummy these words are for you

With all my love

Jess xx

THROUGH THE EYES OF A CHILD

A couple of mornings a week I help out at Jess’s SEN nursery.  I really enjoy seeing the children in the different groups and helping with the activities.  

Recently the nursery had some very special visitors.  They were children from a nearby primary school.  The school children were divided into groups and each group had an adult from their school with them, they were then invited to join the various classes in nursery.  The boys and girls who joined the group I was in arrived just in time to join in with circle time which is the first real activity of the day when we say hello to everyone and also sing a few songs. 

The children sat amongst the nursery children and our teacher asked them to introduce themselves one by one.  Introductions over it was now the turn of the children in our group to introduce themselves in their own special way using song, large photos of each child and a large piece of material which is put over each child’s head in turn. Perhaps I should explain that one.  We have a song that starts off by singing the child’s name (child’s head is then covered) and then asks ‘where are you’ during that part of the song  the child pulls the material off their head (with help if necessary) and we can then sing ‘here I am, here I am, how do you do’.  The children love this, even the more timid ones love to have their head covered and some will get very excited when they see the ‘special blanket’ coming nearer to them in the circle.  The primary children must have thought this was rather odd at first but they were soon joining in enthusiastically.  Next came the nursery rhymes.  Each child in turn is shown two objects which have been taken out of a big box.  Each item represents a nursery rhyme for eg the silver star is for Twinkle Twinkle Little Star.  Once the child has indicated which one they want to sing about then the song it represents is sung.  Again our visitors joined in with the singing without needing any prompting.

At snack time we all sat around the big table.  By now the school children had got to know the names of the children in our group and were happy to sit amongst them around the table.  Some of our children have to have their snack prepared in a certain way, some cannot feed themselves and others are artificially fed so our visitors learnt that not everyone eats the same way as they do. 

During snack time I was talking to one of the teachers from the school.  She said they had done this before and the children loved it.  The children go back to school for lunch then have to write up about their experiences that morning.  I was told that the things the children wrote last time were lovely to read.

After snack the school children left us for a while whilst our children had their group physio session.  Once that was over they were back again to join us in our next activity.  PANCAKES!  Yes it was Shrove Tuesday and we had pancakes to try with various toppings.  The children in our group who could not eat the pancakes were given the chance to taste a small bit of each topping if it was safe for them to do so.  Some of the toppings were sweet like chocolate sauce and syrup and others were a bit sour like lemon and sugar and marmalade. Of course our visitors were invited to try the pancakes too!

The pancake tasting was done with two children at a time and whilst that was going on the classroom was turned into a playground with toys to ride on, things to crawl in and out of and lots of other things to explore and play with.  This is where I thought the school children came into their own.  By now they knew our children’s names and were happily playing and interacting with them.  This was not a group of able bodied children playing with a group of disabled children, this was just a group of children playing together and having fun.  They asked questions, they were given answers and hopefully they took back to their own school a message that just because some children are different they are still fun to be with.

Later that day I went back to collect Jess.  Her teacher told me that she had had a lovely morning playing with two of the children from the Primary School.  Jess loves one of the toys at nursery that wobbles from side to side when you sit in it and can also spin around.  Two children had been playing with Jess and spinning her round in this toy, Jess was laughing her head off the whole time and loving every minute and the school children were enjoying making her laugh. 

There are campaigns to make disability awareness part of the school curriculum and I do agree with this up to a point, but what those Primary School children experienced they could never have got from a book or an educational film. They were having good old fashioned fun playing together with other children and that is the best learning tool of all.



Children are not born with preconceived ideas and prejudice, this is something they learn from us.

If I could see the world
Thru the eyes of a child
What a wonderful world this would be
There'd be no trouble and no strife
Just a big happy life
With a bluebird in every tree

Part of song written by Sammy Masters, Richard Pope and Tex Satterwhite
(As released by Patsy Cline 9/9/58)

THE 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.

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.

FEBRUARY: My wheelchair arrived and I loved it

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:

JUNE:  

PLAYING IN THE CONSERVATORY

IT WAS A WET MONTH BUT I LOVE WATCHING THE RAIN

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

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

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

SEPTEMBER:
My special new bed arrived and I love it

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. 

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.

              
 

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"