Friday, 30 March 2012

Statementing in Oldham

Okay if you have a child who is Hypermobile/EDS in Oldham, please be aware of some serious changes to the statementing system !!

If you child has a disability and requires less than 15 hrs of 1-1 support at school, you will not get a statement!!
Oldham is the only borough in the UK to do away with statements for those who require less than 15hrs support.
You can However apply for a Parental Statement. Which means you have to do all the paperwork yourself. The likely hood of you being successful? 10%.
If you have a child who is Bendy, then you will be assessed on the CAF scale, as that is apparently how they are funding schools direct with regard to any special needs. If you ask for a statement from school, school have to phone the council, and get approval to apply for a statement. You will most likely be given a CAF assessment instead.
So your child has a CAF statement, good, they are getting the support they need, HOWEVER.............
What happens if you move out of the area, or you child then goes to school in Tameside?
A statement was devised as a national standard for assessing those with special needs. OLDHAM have pulled out of the Statementing Standard, unless your child requires MORE THAN 15hrs per week, which generally means that you child would be in a specialist school anyway. Those of us with children in mainstream schools are the ones who are going to struggle.
What does this mean for the EDS'ers out there? Sometimes our kids need very little help, yet other times, they can fall and dislocate and need massive amounts of 1-1 every week. If you child is EDS then you wont get the level of support your childs needs in school, you wont have a written statement providing for the injury periods. You wont have something that will follow their education time, and provide for extra time with exams, lockers, etc.
If you child isnt EDS, but maybe Dyspraxic, or Dyslexic, you WILL NOT GET A STATEMENT. Your child will be bound to the education system in the Oldham Borough, and will get support, however if you move out of Oldham or your child goes to school outside of Oldham, you will then have to apply for a Statement.


Wednesday, 7 March 2012

EDS and Oldham Schools Statementing process

So why did I feel it necessary to Blog about EDS in Oldham?
Because UNLIKE the rest of the Country Oldham WILL NOT Statement a child with any type of Special Educational Needs, if their needs are under 15 hrs of 1-1 supervision per week. This includes mental and Physical Needs.
Schools in Oldham are given funding under a system called Level 3, to provide support in school for any child who needs help, but Statementing is Discouraged. A teacher who has been asked by a parent to Statement their child has to have the idea of a statement application approved by Oldham Metropolitain Borough Council.
If the needs are unlikely to be over 15hrs 1-1 supervision, then a statement through the school will NOT happen.
Parents are then advised that they can apply direct to the council for a statement. The chance of a parental Statement being successful.........NOT GOOD.
This Council is the only one in the UK to refuse legitimate requests for Statementing.
What does this mean for Children in Oldham?
If a child is receiving "level 3" funding at their school, if they leave the area, they will have a copy of their Level 3 funding, but no Statement with which to implement immediate provision of continuing care in a new area.
So Basically if parents have a child who needs Care, no matter how small, they will then have to wait and apply for formal statementing in a new area, leaving them exposed to mismanagement of their particular needs.
A statement is a legal document. A level 3 assessment is NOT a legal Document. A statement is accepted all over the UK, as a legal document. A level 3 Assessment is not legally binding anywhere.
I have 3 children each has EDS. 1 has now completely left the education system, one is at college and one at primary school.
My 19yr old is the Most EDS of us all. He has a Statement. He has had that statement since he was 7yrs old, it is still current, valid, and being acted upon, as he is at College in Preston. His needs are cared for by his College. He does NOT and Never has had 15hrs of 1-1 supervision in his scholastic life. Yet he has a Statement.
My 9 yr old has finally been diagnosed as EDS. He does NOT need 15 hrs of 1-1 supervision at school. He wont get a statement. When he moves on to College or University he will not be able to get the care and support he needs. Getting a statement for a Teenager is hard enough, getting a statement for an older teenager at College.....................? 100% unlikey!!!!
If you live in Oldham, and your child has any type of Special Educational Needs, be it Autism, Dyspraxia, Dyslexia, EDS etc, they will get help.
BUT it wont be Legally Binding help, that will follow them from place to place. To get that you have to get a statement from any other Authority in the UK, you wont get it in Oldham.

A post from my other Blog

This is a copy of a post from my other Blog, which is primarily a crafting Blog, but I thought you might find it interesting...........

This is a different kind of post. Mainly as I have just popped over to a fellow sufferer's blog, and her pain has bought mine to the fore as it were.
This is MY story, and MY blog.
I am nearly 44, I have a rare genetic condition, and I am now a Disabled Blogger Crafter.
I used to play Hockey, at one point for 3 teams at the same time.
I used to be a Police officer.
I used to be a Supervisor.
I used to be an IT Specialist.
I used to run my own business.
I used to be able bodied.
It was hard being able bodied, and I didn't realise that for a lot of you reading this post, that being able bodied means you DON'T have pain 24hrs a day.
I have always had pain.
You go over on your ankle, you go to the doctors and rest.
I go over on my ankle, I keep on going, I don't rest. Going over on your ankle is Normal for me.
I suppose the reason that I am writing about this now is the fact that I have re-connected with a lot of my old school girls. And I wonder how they will see me. I went to Convent schools all my life, and I went to Boarding School, and Finishing School. A lot of my school friends will have and are having very successful Careers. What do I have? A broken body, 3 lovely children, and a wonderful Grandson.
When I go to the re-union in May, I will go in on a stick, with splints on my hands, arms and fingers, and a belt holding my ribs together. How will they see me? Will they see the me they went to school with who was Games Captain, who played Hockey for 3 teams at the same time? Or will they see a broken woman and wont know how to talk to me?
Physically I don't look too bad, I suppose. Slim, a bit grey, but no major wrinkles. I look well. But I'm not.
I have Ehlers-Danlos type III. I have ALWAYS had Ehlers-Danlos type III. When I played Hockey my back hurt, my ankles hurt, I even played nearly a full Hockey match on a badly sprained ankle with a Green stick fracture to my toe. ( I stuck my foot in a rabbit hole). Hurt is normal.
For years I have fought to find out why I seem to hurt and injure myself more than other people. I have been listed as a Hypochondriac, attention seeking, psychosomatic mother. By People who SHOULD know what they are seeing.
Because I look okay, I am dismissed. Ehlers-Danlos is an Invisible condition. Its not going to kill me, as a direct result, and there's no cure for it, so just ignore it and it'll go away.
When I was 38, I went to see a rheumatologist. The Rheumatologist.......hmmn, that's an Old peoples doctor isn't it? The Rheumatologist Diagnosed me as Hypermobile. No more information, other than I would pull and sprain more easily than most. What I didn't realise at the time was that she had marked me 9/9 for bendyness. 9/9? Its a scale used to diagnose the condition Ehlers-Danlos. 4/9 and upwards is Ehlers-Danlos.
I carried on, I knew no different. My son was diagnosed Hypermobile, but as he is also Dyspraxic, we didn't think any more about it. My Daughter was diagnosed Hypermobile. She isn't Dyspraxic.
Hold on a minute.......... 2 kids diagnosed with being Hypermobile like me?
How come?
I looked up Hypermobility. Its genetic. Its a deformation of the Collagen producing Gene. It means that your muscles, skin, ligaments and tendons are too stretchy. And that your Cartilage is too Fragile.
I pushed to see a specialist. I went to see one in Leeds. I was diagnosed with Ehlers-Danlos type III. Hypermobility is now thought to be a mild form of Ehlers-Danlos.
But how did I get it? It turns out that my Dad is Hypermobile, he was a champion Hurdler, and my Mum, who died before we knew all this, had Ehlers-Danlos.
By the time we realised all this my Daughter had nearly died giving birth to her son, because of Ehlers-Danlos. Now she's pregnant again, and petrified.  Tomorrow I have to accompany the mother of 4 Ehlers-Danlos children to the school, to force them to Statement her Ehlers-Danlos children. Then I have to hurtle up the Motorway to be with my daughter, while we fight to be put into Consultant led care for her pregnancy, to try to prevent her death during Childbirth.
The lady who started this post off, has got to go to Hospital to have her trachea stapled into position, to try to stop it collapsing even further next week. I know how she feels. I have a specially written note downstairs by the phone for any poor ambulance man who comes out to me. I have dislocating Vocal chords, and if both dislocate at the same time, I am in danger of drowning myself in my own saliva. There is nothing they can do for me, no last ditch attempts, nothing. If they try to operate and pin things in position, as my cartilage is so fragile, its just going to tear right out at the first swallow. My ribs are now in 6 pieces, as the cartilage between the ribs has torn, and cant be repaired as its too fragile.
I cant be intubated. In case it tears the cartilage. I can only undergo a tracheotomy to preserve my life, provided it doesn't tear straight out, as the cartilage is too fragile. If I can make myself heard on the phone with dislocated vocal chords, before I drown in my own saliva.
So what do I do?
I make cards. I make cards to pass the time, to forget the pain, to not think about it. I make cards when I cant sleep. I make cards when I hurt, to forget.
I am still me, and will always be me, but sometimes I wish I wasn't. I know there will be one particular lady who will read this and understand, and maybe phone to talk to me, to come to terms with this herself. I know there will be friends who will read this and feel saddened by what they read.
Don't feel sorry for me.
Feel sorry for those who know there's something wrong but cant get the help they need.
Feel sorry for those who have Ehlers-Danlos but don't have a Doctor that knows enough about it to recognise what they are seeing.
Feel sorry for the children who inherit this condition. Like my three children and my Grandson.

So what will my old school friends see?

This is going to be hard to push the publish button, I have read and re-read it over and over again.
Its the truth, not a plea for sympathy.
Its who I am. Its who others are.
I am not publishing this for Sympathy, I am publishing this for those who need to know there are others who understand.
Who need YOU to understand.

Tuesday, 6 March 2012

EDS What is it

There's a lot of conditions which are whats called Invisible Illness', and EDS falls into that category. So What exactly is EDS?
EDS is Ehlers-Danlos Syndrome. Please note the Syndrome addition. Syndrome means that its going to cause problems but is Unlikely to Kill you. Another Name for this condition is Hyper-mobility Syndrome, again the Syndrome word!
Try telling some one with EDS that its not a problem as its not going to kill you and see what reaction you get..........If you said it to me there's 2 likely ways I would re-act.
1, I would close up and ignore you, or
2, and more likely if you talk about a Child with EDS that way, I will probably thump you on the nose, before walking away and ignoring you.
I have EDS, my children have EDS, we think my 2 yr old Grandson has EDS, both my parents have/Had EDS.
I do a lot of work explaining EDS to people who don't know about it. I deal with the newly diagnosed, schools, etc, trying to get people to understand what EDS is, and how it can affect peoples lives.
So back to the beginning again. What exactly is EDS? Its a genetic deformation of the Collagen producing Gene. There is NO CURE. There is only treatment and support to try to protect you from Getting worse, and if you have EDS or HMS, you will get worse, sorry.
There are quite a few forms of EDS, but I suffer from the most common, EDS III, Hyper-mobile EDS. So why was I blathering on about Hyper-mobility Syndrome? Because HMS is now considered to be a form of EDS III. So if you are Hyper-mobile and in Pain, there is a good chance that you actually have EDS.
Not all Hyper-mobiles suffer with the issues that EDS/HMS suffer, a lot of Hyper-mobiles have no issues at all, they can just do things others cant.
So what is life like for an EDS/HMS? This is generally of primary importance to someone who is having to deal with EDS/HMS.
That's a hard question to answer, as someone who has EDS has had it all their life, and this is normal for them. But lets see if I can illustrate the point a little bit for you.........When I was young, I kept complaining of pain, it was put down to growing pains, flat feet, poor posture, and laziness. But I wasn't a lazy child. I was quite an active child albeit somewhat clumsy. I played Hockey, the love of my life next to reading. One day in a Hockey Match I stuck my foot in a Rabbit Hole, at full sprint. Obviously I went head over tails, and had a sore foot. I played the rest of the game. (We won, we always did, hehehe), The next morning, my foot was the size of a balloon, and so very painful, the sheet was hurting my Big toe. I got taken to the local Cottage Hospital, where they said I had sprained my ankle, and I had my foot strapped for 2 weeks to stop me being on the Hockey pitch. Quite a few years later, we discovered I had also fractured one of the bones in my big toe. If you have ever broken a bone you will know how painful it is, yet I played a Hockey match on it, and 2 weeks later was back on the Hockey pitch. So how come they missed the broken toe? Simply because my pain thresholds, and any EDS'er will say the same, my Pain Thresholds are very high. I am used to pain. I have had pain all my life. If I was to walk down the street, I would go over on my ankle about 5 times in a mile. If someone who wasn't EDS was to go over on their ankle, they would generally speaking being going to the Doctors the next day with a sprained ankle, and get told to rest, etc. Pain is Normal for us. Its part of our lives, and we ignore it, as most of us have been told at some point or another that its all in our heads, we're making it up, we are attention seeking, etc. and that's from the Doctors we trust to help us when we are in pain.
Why have so few people ever heard of EDS? Mainly because it was only discovered as an actual condition in 1962. It was only through the work of 2 doctors, Ehlers, and Danlos, that EDS was recognised as a genuine condition. That was 6 yrs before I was born. No wonder people didn't know about it, when I was younger.
Working with Blogger becomes quite tricky at this point. I don't want this to be a thesis on EDS. I want it to be something someone can come to with out registering, or jumping through hoops. I want you to be able to pop in and read the bit you need to know about, then be able to come back later and read another bit. I want this to be a resource for a newly diagnosed EDS'er, and for those who need to know how to treat/deal with them, in what ever capacity.
And part of it has to be about how things are dealt with in Oldham, where I live. So for now, I am going to go sort out the rest of this Blog, to make it look more attractive, to make sure links to various sites that can help are working properly, and to figure out wether I can make this introduction a permanent sticky, so it will always be on top, the first thing you see when you come back.
If you have questions I check my Blogs several times a day. if you dont have a blog, just leave a comment, and then check back later, where I will always respond.

Gentle Hugs,