Ladies Camera Club

22 Aug 2011

Guess who comes home tomorrow?

YES! My Belles......Hooray.

One of my fave pics from 2006

A 2008 pouty shot!

She will have just spent a little over a week at her nanna's caravan in North Wales where I'm sure she will have grown an inch and come back with new confidence. Seriously, I notice these things after a week. Luckily she has been spending the time with her two cousins, just about the only kid company she gets these days. However, things are a-changing! An action groups called Aiming High have been out to assess Belles and have awarded her 6 sessions of "no family" time with two volunteers who will take her out and allow her to do stuff without Me or Mark or the Grandparents. This is a unique experience for Ellie and one that I am dying to see how she "copes" with. I could literally cry with glee about the prospect. So this Friday will be her first experience as she goes out for dinner with two girls (I think they are in their early 20's) and whom have been CRB'd and all sorts through Wigan and Leigh's childcare services.

Ellie enters her last year of school this September and I am filled with hope (and equal amounts of dread) about how her future will pan out. She has no clear indication of what she would like to do when she leaves school, mainly because of the bubble she is "encased in" within the school environment. She doesn't get to mix with her mainstream peer group (and by that, I mean children who don't have special or extra needs) and share the experiences of gossip and chatter about how life is. Of course, Mark and I encourage her all we can about "life" but its just not the same. For instance, just before the school holidays we got a call from the Connexions team (the careers advisors). They wanted to explain that they had asked Belles what she wanted to do when she left school and Belles being Belles just said "I don't know". So the Connexions team asked ME what I wanted her to do? Well I almost blew a gasket. Why would I know what I wanted Belles to do, it's not my job. I'm not an advisor but obviously they are. I mean, I have an idea what she wants to do but I'm not steering her to fulfil my wishes. I'm sure that's what she goes to school for - to be educated, you know?!! The conversation did not bode well at all. I am not driving Belles to be what I want her to be. I was hoping the school might set a course or plan for her; I certainly knew at 15 what I wanted to do and I actually went and did it! So this is how it is with kids like Ellie. Systems shirking responsibility at every opportunity and barely meeting us half way. I could literally cry.

I really don't want you to read that as that we don't care because that is certainly not what it is. Its awfully heartbreaking when there isn't a system built for kids like Belles. And yet the Connexions team, with all their knowledge and contacts I feel that they are the right people to guide Ellie. Plus the whole "Non Diagnosis" really doesn't help unlock the doors to all those path ways and roads that are available to kids who have a diagnosis. Its incredibly frustrating and it chokes me all the time. I feel like I'm scratting around in the dark with people prodding me and laughing at me and refusing to help. It truly is a very lonely place to be as a mother right now. Although, to be fair, Ellie is non the wiser about it. She skips along at her own merry pace under the false security of the bubble at school but when it pops next July and she has to move on from it - who will blow her the next bubble? Gosh, I hope you are following me on this one.....I'm trying my best to keep it together, here.

After a sketchy converstaion with the Connexions team, I went to visit a special needs college nearby but it was incredibly heartbreaking. There were some severely mentally disabled children there and it broke my heart. Ellie is not severely mentally disabled but she is not physically abled either - she kind of falls into this grey area that isn't "text book". I really wish I could campaign for kids like Belles who are neither mainstream or severely disabled but I'm so drained from campaigning as an individual now - would I have the strength to carry it out? So the college for severely disabled children is NOT an option because its not fair on her. In truth she would come on leaps and bounds due to the small classes and the structure of the program however, placing her in a room with kids who are at the opposite mental spectrum as Belles is highly unfair. I wish someone in authority would put Ellie in the right box, as it were, so then Id be able to deliver it (her) to the right place... you know?

So the next option is to look at a few mainstream colleges but yet we hit another stumbling block. Ellie is not independent enough to catch a bus to college on her own and nor is there funding to have her collected from home. I was hoping to take on some extra work away from home after devoting 15 years caring but I'm not able to as I would have to driver her to and from college. Not that its a hardship (DEFINITELY not a hardship) but again, because of this grey area that isn't "text book in college legislation", its very difficult for her to manage on her own and again "Momma will be there" - restrictions she could well do without.

I wonder if any of you readers (who are special Momma's) can give me any advice on any services that might be able to assess Ellie or should I just keep chipping away at the current system until someone hears my desperate pleas? I really do not not know what to do next because all authorities simply shrug their shoulders and slope off the subject because even they don't know. I desperately want to have us all go through a 3Di test, that's for sure.....any indication on how we go about that, momma's?

**sigh**

Aaaaaaaaaaaanyway, I'm not ending on a low note. Instead I'm going to share a card that I made, using a manilla envelope and some scraps I found whilst clearing this dump of a craft room up ;)
Diamonds are one of my fave shapes to work with so this cheers me up no end. A splash of colour, a doiley and ink......a perfick escape from the humdrum of a complicated life :)

22 comments:

Anonymous said...

Perfick card Kirsty. .... it's gorgeous, as usual.
Do you get carers allowance? Or does Belles get Disability Living Allowance? Once my DS got it it certainly went a long way towards helping to pay for fuel, etc
Check out your local 6th form college - ours was brilliant with the extra help available. Help is available but no-one makes it easy to find. :-( Connexions here were great with DS. Get back in touch and arrange a meeting for Belle which you can go to? Think along the lines of: "at least they took the time to call me" ?
And don't worry about her not knowing what she wants to do - I don't know any teenager who does yet - my nephew is starting A' levels this year and hasn't got a clue what he'll do when he finishes. He's still insisting he's going to play for Man U! He's good, but not that good! :-D
Jude.x

Sue said...

Fabby card. Just goes to show what you can do with a few bits and bobs.

I am not a special momma or a momma at all for that matter. Did find this article http://bjp.rcpsych.org/content/187/6/568.full
and at the top is the address and email of the main author. Maybe he could steer you in the right direction.

You are a wonderful mum and I know you will do everything you can for Belles. Sending you hugs.

Debo said...

I still don't know what I want to do when I grow up!! But I'd like to live in the flat above the ice cream parlour on Main Street in Disneyland Paris!! Oh, perhaps I could be a dancer in the parades?

Sorry - not much help to you :(

Sue said...

I have just gone though your experience for the third time hunny.
Megan left school this year - I managed to get her into a mainstream college ( they HAVE to provide places for our kids!) They is going to do a "life skills course" to help her become more independent. There are no buses from here (but she wouldn't be able to travel on them on her own anyway!)We have got transport ( £150 a term) .
I am SURE you should be able to get transport- have you phoned the education transport office? Connextions ought to sort that out for you though.
Dan is at another college ( 2nd year) doing a "bridging course - pre foundation course) He does a bit of everything - building/decorating/cooking/animal care- again he has transport.
Natalie spent 4 years doing a life skills /independent course but cannot work, so goes to a placement twice a week. She also belongs to a group (special needs girls group) that she attends every two weeks on a monday night where they do "girly" things - origionaly set up by s.services YEARS ago , but now run by us parents. She is off to Butlins for a long weekend next month .
(((((((hugs))))))
I certainly know how hard it is at the moment and how scarey it feels - make sure you put your foot down re transport .xxxxxxxxxxxxxxxxxxxxxx

EmmGee said...

Hold on in there chuck, we're with you. Sue's comments seem helpful. I know that for you Special Momas it seems like a 'heads against a brick wall' thing.
(Sorry but you're an experiment to see if I can comment to blogs now.)

Ruth Philps said...

I would have thought that as she has to stay in full time education until she is 18 now, then the council have to supply transport and an escort to college until that age? Do you have a local MP or a junior who lives nearby, you need someone to back you up so you can take on this transport issue first..one step at a time..hugs x ps:bit of newspaper publicity never hurt if they turn you down the first time IUKWIM.

Anonymous said...

No suggestions I'm afraid - just a big dose of love and support and hope you find a solution!
Love Nina B

Jaki Morris said...

I would love for you and I to meet up so I could introduce Belle to my George. He too is a special boy, he's kind, caring and I'm sure they would enjoy each other's company.
Maybe one day we can arrange it!
BTW he's also a mighty fine photographer!
Jaki♥

Craftilicious said...

I don't have kids, so can't offer any words of wisdom, but I just wanted to send you a hug of support. You're doing an amazing thing - keep up the fight, one chip at at time.......

Marie said...

Kirsty, have you looked into the Foundation Learning programme at Carmel College? It might be something suitable for Belles (if you could solve the transport problem). If you go to the website www.carmel.ac.uk and into the downloads section and look for the Foundation Learning booklet there's loads of info in there so you could see if it's something suitable.

xMx

Tracie H said...

How bizzarre - we have just been to panel and been approved for funding for J to have access to activities outside of the home through the same dept! We are also going through the same schooling issues here with J.

If Ellie has a SEN statement then are yo aware that she can stay in education until she is 19? Its your LEA's duty of care to ensure they meet each and every one of Ellies educational needs and its there responsibility to provide the required funding - which also includes transport costs!

J's due to go into year 11 in Sept but he is now leaving mainstream because of issues that have risen over the last 12 months (severe bullying etc :( )

We are now looking at him going to a residential college Monday - Friday. Its going to break my heart not having my boy here during the week BUT this is not about my needs - is about J reaching his full potential. Our LEA are funding the placement as well as all transport costs.

Try contacting IPSEA for support - they have been amazing with us and have helped us to fight for funding etc. Do you have Childrens Integrated Services up there? I contacted ours down here and we have now been appointed a case worker who is working along side us to ensure that the LEA and LHA are meeting J's needs in every way.

Its tough but I learnt a long time ago that if you dont fight for your childs right to an education, then no one else will :(

Hugs,
T.x.

Helen said...

Frustration doesn't hit the sides for you does it? I feel for you Kirsty, and glad your gorgeous girl is coming home tomorrow. Really hope someone comes up with some help soon.
Your card is stunning and loving your use of scraps and an envelope! x

Carolyn Phillips said...

Oh Kirsty, I know how you feel. We are in a similar situation as my eldest is also about to start year 11 with all the decisions that brings about and all the same problems.
Her connexions advisor has been fine at asking her what she wants, but useless at looking for realistic solutions and alternatives.
School are great, she is in a mainstream school but one where they do lots of alternative courses inc Btecs etc and they have looked for qualifications she can attain, even if they are slightly different to the rest of the class (eg a certificate instead of a diploma because she gets sidetracked on one section and doesn't finish other bits). They are starting a school sixth form this year and we are hoping that they will continue to do courses of this type and not keep it to all A levels, but the information isn't there yet.
She currently gets an escorted taxi to school and has a full time TA. We have been told if she stays at school this 'should' continue, but that if she moves over in college then we will have to start again applying for help and support.
I don't know what it is like by you, but our local FE college, which runs a lot of low level and special needs courses do run minibuses to pick up students with special needs. I don't know the details, but I have seen them around. I am hoping if she has to go there we will be able to find transport as she will not manage a bus and it seems a retrograde step to go back to me driving her.

I know none of that is any practical help, and I'm sorry I can't give you practical solutions - but I can say you are not alone. I'm not that far from you, up in Lancaster (is that the same LEA?) so if I can help or you want to shout at someone local, do feel free to say.

We had a 3Di test arranged via the school doctor (between the two children they had several similar so I can't recall which it was) and she has been excellent for assisting with referrals, diagnosis (we have multiple diagnosis, all of which interact and therefore what would be fine for a kid with A isn't for a kid with A&B, never mind A,B&C) and for putting us in touch with various people. It was also her who told me about claiming DLA and then insisted I did and she completed the medical section of the form. If you are looking for a 3Di assessment then Belles' school dr might be a starting place.

pigglet said...

hi I believe only CAMHS, GP, or consultant can refer for 3di test at least that's what I have been told. my dd is going into year 9 and I think all the c~~p will hit the fan when it comes to options so I don't have much to suggest as we aren't there yet. my friend works at our local mainstream college in the mld unit,her now 22yr old(just diagnosed with asd) went there and i know she was very impressed with the different options they had. he had transport after a fight with the lea. if you come up with any ideas for social stuff please let me know cos my girlie only has a social life when i organise and drive!
christine XX

Deborah O'D said...

Hi Kirsty

Just read your long post about Belle and for what it is worth heres what I think.

I don't have a disabled child but I am significantly disabled myself. (Both in actual physical terms and also by peoples attitudes!).

When I started school about a hundred years ago (i'm roughly the same age as you!!). The system and my grandparents wanted me to attend a special school but my mum was having none of that.

I attended a great,forward thinking primary school, a fairly rubbish secondary school, and an average FE college. (all mainstream)

Looking back I didn't gain the academic ualifications I am worthy off and could have done with more help (practical) than I got.

The whole experience of mainstream education did set me up for life so to speak and I am glad that its the path I found myself on.

I eventually do a degree, have had loads of different jobs (some great some crap) and my greatest ever achievement to date is two kids.

Life is hard sometimes (like it is for everybody) and sadly living with a disability now at 39 is harder than it ever was. largely due to the fact that I have lost some of the swagger and confidence of youth.

I can't pretend that I can predict what is best for Belle but I do kind of understand.

As I said I have attended mainstream education myself. But I have worked in mainstream schools a college, as well as a special school. I have also done some teaching on courses at an FE college for over 16's with special needs.

The experience of secondary school for children with disabilities is not always positive but in my experience FE is different.

Belle should get a much more individual programme of study and more practical and emotional support at least in any college worth its salt.

If i was in your position my instincts and experience would mean I would (gently) nudge Belle toward mainstream FE. It is a massive leap into the adult world for her but the kids I've worked with at FE did get loads of support.

I hope these ramblings help.

I wish to point out that I AM NOT A MAD STALKER WITH TOO MUCH TO SAY FOR HERSELF WE HAVE MET AT SEVERAL CRAFT EVENTS.

Short, fat, big gob and serious wobble ..

Deborah xx

Anonymous said...

Hi Kirsty, I don't have any suggestions to make. Just wanted to say that I have 2 friends with children who also don't 'fit in the right box'. Unfortunately it seems for them that everything is a battle to get access to anything that is the best for their children.

Di said...

Oh Kirsty - I've wept over your post and many of the comments here. I can't offer any sound advice chick except to say that maybe you need to keep on fighting, but I know you've done so much of that over the years. Looks like many of your lovely commentors have as well. Sending you all some wind beneath your wings and wishing I could do more to help. Di xx

Debo said...

I feel really bad about my earlier post - it seems silly and frivolous now!

I have been extremely fortunate - although it has felt like hard work(that's just being a mum) my two 'ordinary' kids relatively 'sailed' through the school system compared to all the struggles you have all had. (I do have a nephew who has Aspergers but things seem to have fallen very neatly into place since his diagnosis 2 years ago)

So I have no advice to offer but just want to wish you all the strength to keep fighting (not that you should have to! but you need to, which is so wrong) and to say that your kids are very lucky because they have you to fight for them!
x

Lil' 'Ol Me said...

Kirsty you need to fight for her. Seriously you need to push and push because if you don't, you just don't get. Its reality of an underfunded government etc. I work in school in the SEN department as you know. The kids that get most help are the ones with parents who shout loudest. Those with parents that don't interfere with the system just get left behind. Its so not fair and it makes me mad.
Our students go to college after us and tend to do Life Skills courses etc. We actually do the Life skills course in our school for yr 10 and 11s. The transport that our kids have whilst still at school is all arranged and they go off and do one day college release things and they come in on the school bus as normal, then they are picked up by a mini bus and taken to college then brought back in time to collect the school bus home.
Also what about setting up a group of parents with transport trouble and arranging to pay and hire your own minibus for the year to get them all to the college, there has to be more than Belles that needs transport? It maybe fairly cheap too if you manage to get a full minibus. What about advertising of seeing if someone retired that you know would like to give Belles her transport as 'pocket money'. I know it all costs but it may work out.
I hope you start getting the right people help you soon. It makes me mad to see people struggle when there is so much available out there BUT only if you know about it. I'll ask my sister for advice too she helps with parents and families who have trouble integrating into school and she probably knows about systems I don't know about.

Liberty said...

feel for you Kirsty :( Not going to say any more than that, except that you need to just keep banging on those doors. Exhausting as it is. xxx

Lynsey said...

Thanks for the lovely download Kirsty. Your card is beautiful!
Hugs Lynsey x

Julia said...

I have no advice for you just lots of admiration. It seems there are others above though who have given you some good ideas - I'm sure you will find the solution soon. Hugs x