Monday, 31 October 2011
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
Wednesday, 26 October 2011
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
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
Monday, 24 October 2011
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.
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.
Wednesday, 19 October 2011
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
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
Monday, 17 October 2011
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.
Friday, 14 October 2011
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
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
Tuesday, 11 October 2011
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.
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.
Friday, 7 October 2011
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.
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.
Thursday, 6 October 2011
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
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
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