2012

My heart sank when listening to the news yesterday about care in the home for the elderly and disabled.
The government said local authorities were responsible for non-residential care and charges should be affordable.
Shadow health minister Liz Kendall said the services were a "lifeline" for many people and the increases in home care charges for older and disabled people were "a stealth tax on the most vulnerable in society".
Meals on wheels has gone up by 13%and transport up by 33% over the last 2 years.
We are all too aware that councils have to reign in on their spending ,but I do hope in 2012 that the most venerable in our society will be protected from cuts that help them to live independent and fulfilled lives.
The unsung hero's in this is the carer who very often has to sacrifice things in their own lives to look after the ones they love.
So as we say goodbye to 2011 ,we open our arms to 2012.

Christmas wishes

Thankyou to everyone who has visited or left a message on my blog site.
I wish you all a happy and peaceful  christmas .

Direct Payments

I have been thinking about Direct Payments and the issue of it being like running a small business.
This is because you are in charge of your own budget ,you hire and fire your own pa`s, you have to submit time sheets for your pa`s,and an end of year accounts will have to be produced.You can have help from the independent living centre with these issues,but there may be a charge for this service so it would be best to check.
There is a good government website which is worth having a look at for ideas and guidance,the link is below
http://www.businesslink.gov.uk

You will be able to get help with advertising for a PA position and with CRB checks.

Hustle and Bustle

As we are hustle and bustling with the last run up to Christmas ,my mind has been wandering ... thoughts of the only thing we wanted to happen at Christmas was for our daughter to have a day where she felt well.
She loved all the sparkly lights and candles of Christmas, as I still do :)
As I am writing this post for my blog I am thankful for the tecnology of computers which has made so many life changes for disabled people ,making sending Christmas greetings in the form of e.mails to friends and family easy ,and shopping on line thus being able to choose gifts giving that personal touch and pleasure of being able to chose for yourself ... what great changes tecnology has made to peoples lives and their independence.

My Childs Not Perfect

Hi there,
I watched with interest a programme this week entitled " My Child's Not Perfect " .. it is always interesting to see different parents views, but no matter what the reason for or the severity of your child's needs one thing is always the same .. Why my child ?? I did everything correct ..why me ?? 
Of course there is no answer, and you never get over the fact that things are different for your family, and you never get over the fact that things are not as they should be ,you just learn to adapt.
It is an amazing journey and you will meet some amazing people along the way, but the journey will be made easier if the right help is found ,you will need support from the many organisations out there and from council run social services.In our local newspaper over the last few weeks they are doing information pieces about adult social care and it is very informative.Maybe your council has contact with access social care team in your area or visit www.mylifemyway.co.uk

Both sides of the fence

Well this week i`ve heard views from both sides of the fence !!
I had brunch at the beginning of the week with two friends ,one who`s son left education this year and the other who`s son is on the transition journey.
All though my friends son`s care package has now "settled Down " and she is some what happier at the moment, she said how it had been the worst 12 months of her life .. the stress and tribulations that the whole process had caused her and her family whilst caring for a severely disabled child was immeasurable.
My other friend is just embarking on the Transition journey and even though already only 2 years in is finding the whole process stressful on the whole family.
The one thing they both have in common is that they are finding that using Direct Payments gives them such flexibility in how and when they arrange for personal assistants to come into the home and share some of the day -to-day care routine.But both find this has good and bad points with relation to them being an employer and responsibilities that this entails like hire and firing staff ,the paper work side of wages and time sheets..so you need to be able to do simple book keeping skills so this may not suit everyone , but it is my understanding that your local council or disability living centre would be able to help with this.
Then later in the week I met up with an employee of the councils education department, and was pleased to hear from her that things are better than they have been in previous years and that Transition is an area that the authorities are trying hard to address ,so in these times of small budgets and cut backs this is encouraging.

Reebok Stadium

Date For Your Diary...
On Thursday this week ,that's 24th November 2011, There is an exhibition called "Kidz up North" being held at the Reebok Stadium at Bolton.
It is free entry and is host to lots of company's with information from mobility equipment to toys to funding ,so something for everyone.
The exhibition is open from 9.30am - 4.30pm ..see you there :)
For more information visit www.kidzupnorth.co.uk

Children in Need

Last night I watched the "Children in Need Rocks Manchester " on the T.V. It is absolutely fantastic that celebrities will give their time and talent to help raise much needed money to help fund much needed support to families of children with disabilities or hardship.Most of the services we have become to depend on and love would not be able to function or exist without such support .. THANK YOU Sir Terry Wogan for starting this most worthwhile cause and long may the public keep it close to their hearts as I do... xx

Continuing Care

A few days ago I was asked for advice about continuing care.
This subject has lots of grey areas ,it can vary from council to council what packages are available and what criteria has to be met by service users.
Packages and criteria can vary from England and what you can expect to receive in Wales or Scotland so you need to check what your area and council would be willing to provide it is not the same across the board.
Even though Ageuk is associated with elderly members of the community, I have found an informative website www.ageuk.org.uk when you go onto the website on the left hand side look for "LA assessment for community care services" which will take you to a PDF 337KB this has a lot of information relating to continuing care, the information should apply to any adult person over the age of 18 years.
Your local Social Services are responsible for an assessment of your needs which will look at Community care services, Respite ,Day care.
Your Local Authority has the power to give people control of services to suite their individual needs via Direct Payments.

11-11-11

Well I think today my focus is on Remembrance Day.
We should reflect on all those who gave the ultimate price,those who lost their lives not only for their country but to give us today the freedom that we enjoy and the freedom of speech that we can have our say in matters that affect our lives .

Someone to ask

Last night I attended our local church for the "All Souls Service" ,this is held every year to remember family,loved ones and friends ... the faithful departed.The service took a path which interested me , it went as this .....The minister recited this tale of a mother whose child was ill and dyeing,she was asking everyone in her village what medicine could save her precious child and her answer was always ...none !! until she asked one person who said " that is simple ,ground mustard seed ... but you must get the seed from a house which has not been touched by the sad passing of a loved one ".So the mother set off and soon found that everyone she asked had lost a partner , spouse ,parent , child or loved one ...... there was too be no medicine and the child died.In her sadness though she knew that there were others who too had lost and she found comfort from those.But there was a vital lesson to be learnt and it was this .... that you are not alone in the pain and this got me thinking about all situations in life "you are not alone " !!!
And this is what I am trying to achieve by writing this blog that no matter how hard or hopeless the situation seems you do not have to cope alone , someone will have faced this challenge before and there will always be someone to ask for advice, and as my blog progresses this is what I hope to achieve.

Back to Transition Matters

What prompted me to start this blog was the conversation with a  friend whose child had left full time Special Needs Education this summer, and when the children went back to school in September, not all the adult services that would care for ,support and help this young person to live as much as possible an independent life with their family were in place.
Transition starts when the pupil in special education is 14 years of age ,the idea being that by the time they reach 19 years of age and move into adult services that all the relavent needs are in place.When we were in this situation 7 years ago ,things were not fully in place then and it seems the situation has not improved.
But today I have been speaking to a friend whose son is 16 years old and they have not yet had a Transition Meeting at all ,parents and carers can not ask for help with something they are not aware of.It is a most stressful time and the tendancie to want to" bury your head in the sand" is very real ... but the reality is that this state of "Transition " has to be addressed ... it will not go away ... and to leave it is the worst thing that you can do because the 19th birthday will come around sooner than you will believe and things need to be in place ,you need to go through your options ,see what is available in your area and it will vary from council to council.
I hope by putting my experience out there that it will in some way inspire parents /carers to find out and look what is available to the most precious person in your life :)

Snow flake

Well seeing all the early snow fall in America got me thinking about snow flakes.Every single snow flake is unique,no two are exactly the same.So this is why the snow flake is so symbolic to our "special " children ... because no two are ever the same.I have had a lovely visit today to Hope House Childrens Hospice ,which is always such a pleasure ,but once a year a very special remembrance day is held at the hospice to remember the children who have passed away and this is called "snow flake day " ..how very fitting for such special and individual children. 

On this special day balloons are released which is a very moving sight

Action for Children

Action for Children is the new face of N.C.H since 2008.
Our involvement with N.C.H (as it was then) was because of the "Butterfly Project",this was a service that was aimed at families of a "life limited child" ,it gave advice and support,but unfortunately for families now this service no longer exists.
We had a family worker who amongst other things did come for moral support to the school transition meetings with us and was a great mentor.
The group set up coffee mornings for families to meet and chat ,this was really useful and gave a parents view and advice about alsorts of issues.We also had social events such as "picnic teas" which were great fun for all the family and gave a much needed interactive time for other siblings from the families to meet and share experiences.The same theme will run through most of the organisations, that parents need to know that they are not alone .. others share their grieve and concerns for the future.
Below is a link to a pdf file about transition from the Action for Children website which I thought was very interesting.
http://www.actionforchildren.org.uk/our-services/disabled-children/transitioning-into-adultho

Back to Transition Matters

If your child has a learning disability, they should have a statement of special educational needs. This describes the childs needs, and the help and support they will need.
The school will review the special educational needs statement every year, with input from the organisations and people who are involved in providing the support. The school will invite parents/carers and the pupil to an annual review meeting until the pupil leaves school. The local authority will remain responsible for pupils until the end of the academic year in which they turn 19 if they continue in their education,most pupils with special educational needs will stay at school untill 19 years of age.
The annual review is designed to assess the progress the pupil has made over the past 12 months and to work out what changes are needed in the description of needs or the provision of special education,it is usual for the pupil,parents/carer,local education authority and teaching staff from the school to be in attendence at all review meetings and a Transition Officer from social services from the age of 14 when transition begins from childrens to adult services.

Portage

My mind has been wandering ,back to the summer months ,July in particular ,when with the help of my hubby we had a stand at Warrington Disability Awareness Day for Hope House Children's Hospice.But what I am thinking about is the stand next to ours ,this was promoting"Portage" ,Portage is a home visiting educational service for pre-school children with additional support needs and their families.
The gentleman with the stand was Chris Rodgers,and as you do we got talking and I remembered when I used to take our daughter to the local group.We did have an educational phsycologist visit the home but it was just as important for me to join a playgroup for a coffee with other mums and children with similar challenges ,we could compare experiences and communicate about benefits we may be entitled to and other issues like what schools were available in our area,don`t forget you are not looking at the numerous primary schools on your doorstep ; you may never have heard about the schools you are to be looking for, how to apply for incontinence aides ,and other social benefits or support services.
Below I have put a link to Portage website if this may be of help to your family.

www.portage.org.uk

A Different Place

What a fabulous weekend ...... I was asked by Hope House Childrens Hospice to be the after dinner speaker at thier Annual Charity Ball at the Grosvenor Hotel in Chester this last weekend ... what a priveledge and an honour.

I was nervous as you would expect ,but also it was a chance to speak to people and put across how it feels as a parent to be thrust into a job you have no training for or realisation of the task you are about to underake,my chosen profession on leaving school was a hair stylist .. not a nurse, but I had to learn and very fast to be able to perform medical procedures to my child that most district nurses would not normally undertake.

The reception from my audiance was amazing and heart warming, I was humbled by the people who spoke to me after saying how moved they were by my experience ,below I have written a poem that I incorporated into my speech, I think it puts across perfectly what I was trying to achieve on Saturday night.

                      A DIFFERENT PLACE  

WHEN YOUR GOING TO HAVE A BABY,IT`S LIKE PLANNING A FABULOUS HOLIDAY TRIP TO ITALY! YOU BUY A BUNCH OF GUIDE BOOKS AND MAKE WONDERFUL PLANS!

THE COLISEUM, THE MICHELANGELO`S DAVID, THE GONDOLAS IN VENICE.

YOU MAY LEARN SOME HANDY PHRASES IN ITALIAN….IT`S ALL VERY EXCITING . AFTER MONTHS OF ANTICIPATION THE DAY FINALY ARRIVES,YOU PACK YOUR BAG AND OFF YOU GO!

SEVERAL HOURS LATER THE STEWARDESS COMES AND SAYS “WELCOME TO HOLLAND “HOLLAND ? YOU SAY ..WHAT DO YOU MEAN HOLLAND ? I SIGNED UP FOR ITALY ,I`M SUPPOSED TO BE IN ITALY ,ALL MY LIFE  I`VE DREAMED OF GOING TO ITALY!

BUT THERES BEEN A CHANGE IN THE FLIGHT PLAN,THEY`VE LANDED IN ITALY AND THERE YOU MUST STAY.

THE IMPORTANT THING IS THEY HAVEN`T TAKEN YOU TO SOME HORRID DISGUSTING PLACE FULL OF FAMINE AND DISEASE ,IT`S JUST A DIFFERENT PLACE.

SO YOU MUST GO AND BUY NEW GUIDE BOOKS, AND YOU MUST LEARN A WHOLE NEW LANGUAGE. YOU WILL MEET A WHOLE NEW GROUP OF PEOPLE YOU WOULD NEVER HAVE MET. IT`S JUST A DIFFERENT PLACE.

IT`S SLOWER PACED THAN ITALY, LESS FLASHY THAN ITALY, BUT AFTER YOU`VE BEEN THERE FOR A WHILE AND CATCH YOUR BREATH, YOU LOOK AROUND …AND YOU BEGIN TO NOTICE THAT HOLLAND HAS WINDMILLS ..HOLLAND HAS TULIPS ..HOLLAND EVEN HAS REMBRANTS.

BUT EVERYONE IS BUSY COMING AND GOING TO ITALY AND THEY`RE ALL BRAGGING ABOUT WHAT A WONDERFUL TIME THEY HAD THERE.

FOR THE REST OF YOUR LIFE YOU WILL SAY ..YES ! THAT’S WHERE I WAS SUPPOSED TO GO, THAT’S WHAT I`D PLANNED! AND THE PAIN OF THAT WILL NEVER ,EVER GO AWAY.. BECAUSE THE LOSS OF THAT DREAM  IS A VERY SIGNIFICANT LOSS.

BUT …. IF YOU SPEND THE REST OF YOUR LIFE MOURNING THAT YOU DIDN`T GET TO ITALY, YOU MAY NEVER BE FREE TO ENJOY THE VERY SPECIAL, VERY LOVELY THINGS ABOUT HOLLAND.

 

Hope

Hope House is a Children's Hospice in Morda near Oswestry Shropshire.
They provide practical and emotional support to families facing the pain of losing a child.
I know today's post is not directly linked with Transition because not all families will fall into this category but I felt I wanted to mention Hope House as it is very dear to my heart.
Our daughter visited Hope House for 9 years and we found the support from staff there invaluable.
A child can be referred to Hope House from the time of diagnosis.
There is a social work team based here to help families with what ever obstacles are facing them including growing up and facing Transition,with today's wonderful doctors and consultants children with severe medical conditions who in the past would not have survived to reach adult hood are now reaching that milestone and Transition has to move with this as well and offer care which has never been known before.

Tomorrow evening I feel privileged to have been asked to do a short after dinner speech about what Hope House does and how it helps families at their annual ball :)
www.hopehouse.org.uk

Health Visitor

One of your first point of contact with professionals might be your NHS Health Visitor.
The Health Visitor is a qualified registered nurse,midwife,children's nurse with specialist qualifications in community health which may include health education.
Health Visitors are particularly involved with families with young children under 5 and with the elderly.
Most will work alongside midwives,so you may have been introduced at anti-natal classes.
Access is usually through your G.P surgery,Health Centre or Clinic.
There is a useful website http://www.healthvisitors.com that may be able to answer any questions you may have.
We were very lucky in having a Health Visitor who took the time to research support groups within our area to which we could gain access and invaluable support which would help us over the coming years.

Why

Why do I want to do a blog called Transition matters ??
My daughter was born with special needs.She attended a school for pupils with Special Education Needs.
When the young person reaches the age of 14 years they start a process called Transition.
Transition is too make the process of going from education into adult services.This time is very stressful for parents and carers,you think when things are not going well that they are the only family that this happens too ?? no one else has these complex issues ?? I want other parents to be able to see how other families have coped with this enormous change to thier lives and thier childrens.
With main stream education parents have more oportunity to meet and exchange opinions at the school gate for instance ..... but this usually doesn`t happen with special schools as often the pupils come from a much wider area and are often taken by school bus or taxi.
It`s nice to hear from others who have experienced the process first hand with thier own children and too know there will be light at the end of the tunnel.

As it`s National Poems Day

A very special poem for very special parents

A meeting was held quite far from earth
It`s time again for another birth
Said the angels to the lord above
This special child will need lots of love

His progress may seem very slow
Accomplishments he may not show
And he`ll require extra care
From the folks he`ll meet way down there

He may not run or laugh or play
His thoughts may seem so far away
In many ways he won`t adapt
And he`ll be known as handicapped

So lets becareful where he`s sent
We want his life to be content
Please lord find the mother who
Will do this special job for you

She will not realise straight away
The leading role she`s asked to play
But with this child sent from above
Comes stronger faith and richer love

And soon she`ll know the priviledge given
In caring for this gift from heaven
Her precious boy so meek and mild
Is heavens very special child