Ladies Camera Club

17 Apr 2012

Things are a bit tough

For Belles, that is.

**This is a very wordy blog post and not craft related - just so you know!**

She is in this hairy transition period of coming to the end of school and starting college. She is also trying to think of things to do for the future but when we try and explain that she is unable to do those things, it makes me feel like I'm the wicked momma. You are supposed to let your kids dream and wish and hope but the raw facts of some matters are just too damning. The other week, out of the blue, Ellie thought it might be a good idea to try working in a Library. I thought about it and save for heavy books, she would be perfect. I suggested she try volunteering first so that she could prove her willingness without being set back because of her problems. And lets face it, her only problems are muscle weakness and confidence where a library is concerned. Plus she wouldn't really need her wheelchair for the job either.

So I rang up the connexions team at our local authority to see how we should approach it. The guy at the other end was enormously helpful. This was a huge relief as normally cases like Ellies are just chucked by the wayside. You know why don't you? Aaaaah yes, the dreaded "she doesn't have a diagnosis so we point blankly refuse to help you - now be off with you, you vagrant, you are ruining my life". Obvs he didn't say that but when people point to this lack of diagnosis, they may as well be saying that. He did, to be fair, come up with a few suggestions; of which we have tried or will attempt to try. Then suddenly, he asked if we had a social worker. I said "No, didn't know she had to have one really".

He then gave a heart stopping "ah".
I know that "ah" sound.
Its one that crushes my chest and sends me crumpled to the ground. It means there is a problem.

And then he asked "Have you contacted Embrace?". I said yes and we were informed that they could not help us. Embrace is a local charity that offers advice, advocacy, support and information for people with disabilities. But when they came to take our details in our home last December, they never even clapped eyes on Ellie. And because she doesn't have a diagnosis, they fell short of routing out a solution for us.

**insert tears and snot here, I'm getting a bit choked up**

So back to the Connexions team. I am a massive fan of the Connexions team in Wigan. One of the team who liaises with Ellies school has been AMAZINGLY supportive. I can't credit her enough even when she has suggested things I knew were outrageous beyond comprehension, I also knew she meant well. Anyway, the guy thought that, seeing as the book stopped at the point where "she doesn't have a diagnosis", I should try Embrace again to see if I could further pursue help. After all, the education system recognises that Ellie has special needs as she has a statement and attends a complex needs school and a special needs college during her mainstream syllabus at school. Surely if the education system recognise she has special needs, why does the fact that she doesn't have a diagnosis stop us accessing different outreaches? Its like Ellie is only special needs when it suits the school when it comes to finance but not for help elsewhere - does that make sense?

So I rang Embrace again. I have to tell you that when I ring these places, I never start with any aggression or grievances or axes to grind. After all, if you need help, the nicest way to ask is with good humour and a kind heart. The woman at Embrace was super nice. I mean that. She was patient and listened to what I had to say and did lots of checking for me. She was an absolute diamond. She mentioned that when Embrace came to our house to take Ellies details (remember, they never saw her!), the came back to the offices to do some ringing around. They contacted aiming high, the befriending service (who can no longer help) and the social services. Apparently the social services had that letter sent to them on 7th dec and still haven't come back. And they are the people we really really really really really need. They are the ones who can be assigned to Ellie to draw up a case study and present, in BLACK AND WHITE, the true and official evidence of Ellies issues. Apparently, its the black and white that initiates action for most outreaches. Not a worried momma on the phone asking for help. Worried mommas are a NOTHING in this world. NO. THING. But having yourself a super social worker is like having a fairy godmother by your side and who is on your side.

In the same call, the helpful lady at Embrace suggested that she put Ellies name forward for Pathfinder. I had NEVER heard of it before and as she went down the list of what Pathfinder was, the more I got excited. In a nutshell, Pathfinder for Ellie would be like the second coming. Because Pathfinder, it would seem, is usually awarded to kids with a clear cut diagnosis and where all routes lead to carefully managed solutions. Pathfinder follows a child's twists and turns both educationally and medically up until the age of 25. Its paves the way for kids and adults that follow her so that information and access to outreaches are tried and tested for them. Basically Ellie is the guinea pig (for want of a better word) but with funding to open the right doors. Its monitored, tracked and recoded so that mistakes are learned from and successes are triumphed over.

For Kids like Ellie who fall into this vast wasteland known commonly as the "Grey area" and subsequently awarded the Pathfinder - well, it would be explosive. Wouldn't it be fantastic if Ellie was the first ever child to go through Pathfinder (with her strange array of ailments that have no diagnosis) and that she got the right help at the right time with the right people without me ever having to SCREAM to get it in the first place? I would sever both my arms to live in a world like that.

So the call ended like that and I was just so so excited.

Then Belles and I went to the Library to do some GCSE Science revision. Her GCSE's are coming up very soon and a fear for her results. Her expected grades are not flashy but they are passable and that ok. However, I know. I repeat. I KNOW she has more to give. In some ways I want to blame the education system about her lack of care for her school work because what I taught Ellie in an hour and the enthusiasm she gleaned from it was a shock to me. A real shock. I'm talking nuclear proportions style shock (he hee....I learned about atoms and neutrons and protons during that session too!). If only Ellie would come home from school that enthused but whats worse is, why didn't I realise all this with her sooner? I mean, I realise the education system stinks a little. A school has to educate no matter what the child's ability is but they cannot simply nurture each child individually. Kids are either gifted, mainstream or under achievers. The people that benefit most from school are the mainstream. Gifted kids get frustrated and under achievers just struggle to catch up. I know this, I was a pupil myself....I saw this with my own eyes. And it wont ever improve. I trusted the system and whilst I don't think the school has mistreated her one iota, I do think that perhaps teachers should talk to parents and not just one night a year at parents evening - what the hell can that achieve?

Oh I don't know....its a mess. This kids has so much potential and all she needs is guidance and a fun way of teaching. A relaxed way and in the quietness of a library with no distractions from unruly kids and teachers shouting. I'm distraught that I never considered homeschooling before. But then I have to think that I had to work - jesus, where is the balance in all of this?

Anyway, as we wrapped up the revision session (which I have to say is educating ME too!) Ellie approached the Library pod and asked the guy if she could make enquiries to volunteer working in the Library. I've got to say, our Library is a listed building and is a beautiful little place - light and airy, to say its listed. He looked at her and said "No, we don't do that". He was really nice but from the way he was speaking and reacting, I could tell he thought she was a "kid". I didn't want to interject. I REALLY DID NOT WANT TO....I SWEAR, but my Momma instinct took over and I said "She is deadly serious. She is 16 and wants to volunteer in a library one day a week starting September". I think the shock of me revealing her age prompted something in him. He was a really nice guy and asked Ellie to fill out a slip of paper. The next thing we knew, the Library Manager came over to speak to her. She was patient and kind and explained that this Library does not accept volunteers but another one, nearby, does. Trouble is, its a bus ride away and the bus stop is half a mile from our house. So she couldn't do it independently as she doesn't have a motorised chair. Lets not ignore the fact she has barely left the house on her own in her life. Can you feel this frustration, I hope so....I do hope so. If only to help share the burden. Nevertheless we shall find a way but hopefully they will find a way....I'm holding out on some positivity on that score.

This leads me to today. It gets more tricky...........
On a Tuesday Ellie attends a complex needs school. The reason being is that she wasn't coping with the year 10/11 options syllabus. The school decided to place Ellie in a complex needs school on a Tuesday for maths and functional life skills. And on a Wednesday, she attends a special needs college for Floristry. The reason why they did this was because she wasn't joining in with the syllabus which meant that they had to "house" her elsewhere. Not exactly the most thrilling of choices but still an education of sorts. She is doing REALLY well in Floristry and should achieve a level 2 (which is pretty awesome for a kid who started a college course in year 10!). She does enjoy floristry but knows for a fact that she could never get a job in a florists because she can't tie the wire or tighten the green tape or use secateurs, Of course she could hope for a very empathic Florist shop but lets think about this REALISTICALLY for a minute.

Aaaanyway. The complex needs school is a lovely place. In fact its a very happy and positive place. I know Ellie enjoys the lunch time pampering session but she does think that the work is easy. She is always first to finish and often helps the teachers with things when she has no more work to complete. The rest of the day is spent doing things like shopping lists, adding money, making lunches and small meals. To me, that's just a waste. A waste of revision time, at least. I can totes teach her those things myself. In fact, we do. So today, I pulled her out to do some more revision from home. God knows she can attain much higher grades by doing so. I know it. I will make it happen. I WILL. In the mean time, whilst she was googling Sankey Diagrams and Energy Efficiency, I rang the school to see if I could officially/lawfully pull her out (on a Tuesday) between now and the end of term. She only has 6 weeks left as it is, i hardly think its a crime especially when its for her benefit. The teacher I spoke to was fantastic and amenable. But it looks shady right now because Ellie has a statement and pulling her for one day might affect that funding. This disturbs me as she doesn't get funding for the complex needs school (unless they transfer it from her mainstream purse). And the help she does get at the special needs college is full time (an assistant is sent from her school for the entire day) but Ellie tells me that the assistant often helps other children in the class thus diluting the funding which is primarily earmarked for her (essentially making ellies statement funding a right balls up as it is). I hope to goodness we get permission to Home school her on a Tuesday for revision. I need to make this work because I care very much about this untapped potential that we have seen over the Easter Holidays. Her enthusiasm for Science has increased so much. And we could make that happen with English and Maths too. We know it. I KNOW IT.

And here endeth the 3874673564315671 chapter in life and trials of Momma to a special needs kid (when its suits, anyway!).

Can you share your thoughts as a frustrated Momma?
Would love to hear from you x


Stephanie Howell said...

Kirsty, My dear Kirsty...
I just want to say I think you are INCREDIBLE. She is so so so blessed to have a mama like you. I mean that, Kirsty. You are God's gift to her. I love you so much! S

susiesu said...

O Kirsty love I feel your pain and anguish so deeply I am so upset for your frustrations that I shall respond tomorrow. For now trust your intuitions especially your momma ones - they will take you where you are meant to be. lots of hugs Susiesu xxx

Jan C. said...

Well, that explains why you wanted to know if anyone worked in a library! I don't know what the library system is like in the UK, but I work part-time as a "Library Assistant." My job involves being on my feet most of the day, working the desk, walking around the library, pulling books off the shelf to fill holds people have placed, lifting bins, putting things together on carts for the shelvers to shelve. It's actually very physical. And the library is no longer the quiet place it once was, either. There are tons of noisy tantruming kids and demanding adults. But that said, I admit I don't know what all of the positions available at the library are. I work at a branch, but I know there are tons of positions at the Main library that I don't know about. Surely there must be something in that line of work for a lovely young lady with physical limitations!

Or what about you and Ellie going into business together someday? You are crafty and enjoy creating, and Ellie is fabulous with florals but can't twist wire. Hire out to do parties, maybe? You do the invitations and she does the flower arrangements? You are so inventive and determined--think way out of the box!

Patricia Rodriguez said...

I just want to give you both a HUG!

*reyanna klein* said...

I'm so sad you guys are going through this. It's always so hard to hear when you're struggling because I love you both so much. :-)

Ellie is SOOOO blessed to have you as a mom! WOW! You are so amazing! Keep your chin up. It will get better. Hugs to you, Friend! :-)

Bettyann said...

I believe in the power of you and your momma-strength...sending heaps and heaps of love and hugs to you and your precious Ellie !!!!!!!!!!!!!!

Neil H, AFCO Stoke ;-) said...

Hi Kirst.

You know I didn't realise that you struggled so much because Ellie is unable to be diagnosed. Is there a support group or similar in the country that you connect with?

Social Services surprise me no end ... NOT! I have a case at work where they have failed to react to a plethora of reports of child abuse against a bloke currently in custody that I'm responsible for and the Probation Officer said she was appalled by their wilful neglect of the case. It really is shocking.

Anonymous said...

a lack of a formal diagnosis does not stop help. It is for Ellie to be in contact with her newly allocated Social worker and for them to work out a plan asap as she is 16 now. Her decisions and her choices.
few thoughts -
DLA use? why not allow her to use her money for a motability chair?
How will Ellie cope with adult workplace conversation and issues?
Lots of things which need to be dealt with and possibly for ELlie more important than exam results now. She is 16 and should be able to be out with her friends, boyfriend, experimenting in the world with living - she is 16 with potential and yet is being held back in a world of being taken everywhere and not allowed to be a 16 year old. If she is going to work and have a life outside of school and home then she needs to be allowed to do it and enabled to do it. A wheelchair would be a start and as she can walk one which she doesnt need to be in all day might be the way forward. her OT will assist *her* in choosing the right one and soon as she does it the real adult world she needs to be able to survive in will then be at her finger tips. Hope she enjoys it soon enough. relax and watch her flourish soon

Carole Z said...

Hi Kirsty, oh I do so feel for you and how lucky Ellie is to have a Mum like you! I work in a Volunteer Centre, which is integrated with a fairly large, busy library but they only take volunteers for certain work -helping users with IT and home delivery to the elderly. Unfortunately, especially in this economic climate, some of the librarians feel 'threatened' by volunteers. One of our librarians has Muscular Dystrophy and spends most of her time in a wheelchair, but she loves her work and doesn't have many problems with it at's a shame that the local library doesn't take volunteers - with librarianship, in our library for sure, there are lots of opportunities for getting creative with craft days etc.
Big Hug for a bright future for Ellie, whichever road she takes, Carole Z X

Anonymous said...

My DS2 did voluntary work in a library (He of the Aspergers and Bi=Polar). He walked about a mile and a half to get there, rather than use the bus... I know Belles can't do that, but maybe a taxi? He loved it. And I hear what you are saying about floristry, but go and ask in a shop if they would let her do some work experience - explain her problems to them; you just might find one prepared to give her the chance and maybe even know a way round it?

I really hope the school lets you keep Belle at home one day a week, but I would be very surprised.... They are very precious in their own ability to be of no help whatsoever for Special Needs children! :-(
You don't have to follow a school timetable, or even the curriculum to Home Educate. It could be fitted in around your work - and even Marks? And Grandparents? 6 weeks? Well, she has a dental appointment week 1; hospital week 2, physiotherapy week 3??? Or do they want to see proof of "these appointments"?
DS2's last school - he had a great Head of Year who felt he would benefit more from Home Tutoring, with a teacher provided by County. To do this he had to "have a diagnosed condition and not attend school at all". He didn't have the diagnosis and managed school occasionally. So she lied about the diagnosis, and when he went to school he reported to her not his form teacher so it looked like he wasn't attending, but people knew he was there if there was an emergency. We got the Home Tutoring! :-D

No-one has EVER asked to see any official proof of his diagnosis. Lie. Make something up that most closely fits her. Something with an odd name that no-one can pronounce is best. I've found that people, generally, don't want to appear ignorant by asking what it is. And sometimes Momma Bear has to do things she wouldn't normally dream of, in order to protect Baby Bear.

Sorry - I've rambled on..... But I just get so flaming angry that in this day and age of supposed equality it still isn't bloody happening if you don't fit into what is considered the norm....... Grrrrrrr. You go for it girl! (((hugs))) Jude.x

Anonymous said...

Hi sweetie pie, it is so frustrating I know and I know how hard it is as a mom to go through this over and over again. Recently Anthony was tested to see what kind of education he could do for highschool and his test result were very high. I cried when I read them becuase I always felt that he could do so much more. I have said this over and over again to his school and they never did anything with it. Untill i shoved them the testresults under their noses they just had to listen and since then(in 3 months time!!!!) he went from a class 5/6 level to the top of class 8 level!!!! in 3 months time!!! I am happy for him but also so pissed because why didn't they listen to me earlier??!! So yes i totally get it and i totally want you to come to the netherlands soon!!!

miss you!


Tina said...

Hi my darling Kirsty. I feel for you and Feel you need to call a meeting to discuss the feelings you have about more revision. The statement is for helping with her progress, if there are any major changes to help her the Statement can be altered. Why do people, Professionals, Not you! Not use the statement properly. It is for Ellie not them. It is her individual timetable surely they can look at what is best for her, at this time sure you know You can call an emergency review meeting, call your local authority to personally speak to the SEN assessment team . I apologise if you have already done this as you are such a wonderful on the ball but very frustrated mum. WHy dont Portage work with all ages, we would fight for you my darling. Good luck and stay strong. She is one very special living angel who will succeed > :)

Jenne said...

Kirsty hugs to you and Ellie. Life for special needs kids in the school system is pants, really pants. We just had a case yesterday where the parents have asked for even more help for their child with a statement ( they want more TA hours) and the county have decided that in fact he needs less help and have decided to cut his hours! Shocking! We are appealing but we don't hold out much help.
As for TAs helping other kids when they are meant to be with Ellie, this is normal working practice for us. It's to try to encourage more independent working, not make the child look like they need 'special help ' exclusively , that way the other kids think the TA is in there for the class rather than a particular child. Also we do it to gain respect etc from the other students so that we have a relationship with the whole class, that way if we ever need help from one of our students peers, for our student, we are more likely to get it because they don't see us as a threat, , an outsider, some form of cheater for the student! My student often comes top of the class and in the beginning the class used to say that I was doing his work for him, or that he only came top because he had my help. I help anyone that needs it in his class and they will all talk to me now, laugh with us, help us etc because they know now we are not a threat to them and their needs or their class , I am included rather than excluded. This helps my student immensley. However my students needs come first ALWAYS!
I hope you get something soon that gets you to where you need to be with Ellie. She is a very lucky lady to have such a wonderful mum and dad. X

Sue said...

Blimey, I'm not surprised you feel frustrated. No words of wisdom, but I want to wish you luck with all you are trying to do for Ellie.

Jaki Morris said...

It is very difficult to know what to write.
You instinctively know what is right for your daughter and I know you will fight to get it.
I agree about taking her out of school to help with her revision. As a teacher albeit an English language teacher, it really frustrates me when bright and willing children aren't given the opportunity to learn in a way which suits the.
It's wonderful that you have discovered her love of science, even if you feel it is at a late stage, we are never too old to learn we just need the inspiration and you are her inspiration as she is yours.
Take very good care and you can be safe in the knowledge that you have a huge wealth of support and love from people who really care about you and your family.
with love

Candace said...

Kirsty I really feel for you all as a family and it scares the he'll out of me at the same time too. I've only been battling for 5 years now with Liam. School have recognized aspergers but still fighting to get the statement (why does it take so long, so many forms, so many meetings) but medically we are no where near a diagnosis!

Freya has a diagnosis of juvenile arthritis and I have a meeting booked for Monday when the head & I WILL fall out. Her class is upstairs when her JI flares she can't walk, let alone climb stairs. So doesn't go to school, I ask for work and it took 6 days last time. Then the first week of hols I get a letter about her attendance! Nothing personal to her circumstances just a bog standard letter. They even included time at the hospital for non attendance.

The head tried to put off getting an evacuation chair until the education authority insisted due to equality act she had to.

Well I am insisting the classroom is moved downstairs when I see her on Friday. Which by law they have to do if Freya cant access upstairs. You may hear me ranting, raving and quite possibly losing my temper at your house.

Just frustrates the hell out of me and I absolutely dread what is to come!

Doda Smith said...

I think your love for your beautiful girl is causing you to do all the right things and I am confident you will make the right choices for her to help her along in life.
She is blessed.

Lisa-Jane said...

I cannot imagine how frustrating this must be for you and Belles and I can't add anything other than more love and hugs really. I'm lucky to have been around home schooling Mommas since before I had the children so I know that I can pull them out if I ever thought they were not getting what they need at school. I just find it so sad that this is needed. However, I also understand that in a class of 30 children with one teacher, possibly a TA or 2, individual care is not achievable. Some children thrive, others don't. Some, like my boy, look like they are thriving and then it turns out that they have been hiding a problem for over a year and we are now having to work doubley hard to fix it. You will find the right thing for her, it will come when you least expect it but she WILL be okay because she has you as her Mummy. Take care lovely lady xx

Di said...

And round and round it goes. So sorry you're still having problem upon problem - but you WILL get through it, I know it. Remember one of the things in that loooooong email to you was that you need a Social Worker? I still can't see why you don't have one. (You can have ours, if you want her - I can't stand her. But that's another story :-).) Would you be happy for me to forward your whole entry to Faye, to see if she has any suggestions? You have so many people on your side, it seems impossible to think that there isn't an answer, somewhere.

Keep on keeping on, Kirsty - you'll get there! Big hug. x x

becslb said...

One of the librarians in our library is in a wheelchair - it doesn't stop her from doing most of what needs to be done. She has a tray for carrying books and the wheelchair moves up and down so she can reach various heights (don't think she can reach the highest shelves but she can do most of them). For volunteering.. would she be able to volunteer in a school library? I was a librarian volunteer at my high school and knowing the funding problems schools have, I don't see why they wouldn't jump at the chance? After all, many places take on work experience students for 1-2 weeks, why would this be different?

How much would a suitable motorised wheelchair be? Am just wondering if this is something that the "power of the web" could be used to help raise money?

Just thinking off the top of my head - hope that's ok!

Becca x

Debo said...

What can I say? I can only BEGIN to feel your frustration. You deserve SO much better, you must do whatever it takes to get what you need - and I would do as suggested about the diagnosis (ie. lie!!) AND I would take Ellie home EVERY tuesday afternoon because that's whats best for her! As Jude says, 'doctor, physio, dentist, hospital, whatever!' appointments. Sod the school's requirements! Ellie's come first!

Good luck (though that doesn't sound enough)

Laura said...

You, as a carer, should be entitled to some support. We found a carers support network through our gp surgery and my carer gets a call every few weeks from her support worker. It may not be 'help' but you get to offload and she/he/they may come up with something. Everything is worth a try. I'm thinking of you!

Kim said...

ellie is so lucky to have you as her mum, at least she has your support no matter what! it really saddens me to hear you are having so many problems getting her the help she needs, when i know someone who is playing the system simply beacause they couldn't be bothered to go to school & now the school is sending home work and bending over backwards for a spoilt brat who couldn't (and still can't) be bothered!!...sorry thats my little rant over but what i say is true, ellie is trying to be the best she can be and have a productive future and because you are nothing but honest you have to fight so hard to get her the help she deserve. i really hope things work out amazingly for all of you, you truly deserve it.

mckinkle said...

Hi Kirsty,

I can only echo what so many have said above: thank goodness YOU are Belles Mum as you have the tiger in you to fight for what is right.

I can personally appreciate the frustration with fighting the system and I wish you strength to continue.

Would befriending a lady who could drive/taxi her to the library that does accept volunteers help? It could be trialled over the summer in readiness for sept maybe to make it easier for Belles to adjust to it?

Good luck with the Science revision and give me a shout if you get stuck as my girl is a science teacher - who I know would have bent over backwards for your Belles in trying to help her get more out of her classes.

Keep strong
Keryn x

Evonne said...

Kirsty, just a quick thought... I work in a library and there's a lot more to it, than just shelving books! Thats the smallest part of the job really. Behind the scenes there's the cataloging, book binding, reviewing, stats, purchasing, to name just a few etc etc
I wonder is there any way that you could get voluntary experience for Ellie in any of these areas?
Sorry you are going through such a rough time right now xxx

Clair said...

Hi Kirsty..I have no words 0f wisdom i'm afraid..but I just wanted to send some {{{HUGS}}} your way xxx

Julia said...

I too can not offer any wise words but you are definitely on a pedestal as far as I am concerned and I really hope you get what you need for Belles xx

Helen said...

Wow, it's no wonder you're feeling frustrated! I hope you can find something for her soon. I have a similar frustration at the moment, trying to find my 15yo daughter a job/volunteer position. She has "needs" - not diagnosed but possible asperger's, ie her problems are social rather than physical so she can't just apply for a job in a shop etc as she wouldn't talk to anyone who came in. She loves animals so I tried all the local kennels but they don't need anyone. So I tried again, offering her a volunteer. Again, nothing. There's a "health and safety" issue apparently. Tried the animal shelters - again, they played the health and safety card, saying they don't take people under 16. One of them had the nerve to tell me they weren't insured for under 16s and then went on to say that "we do have some younger ones working in the cattery". I asked her to clarify what she meant by younger and she said "about 14 or 15". Clearly the health and safety policy doesn't apply when it suits. But what bugs me most of all is the attitude - if somebody rang me offering to help me do my work FOR NOTHING, even if I didn't want them, I would show gratitude. They've mostly been dismissive. :( Sorry to bang on but just really wanted to say that, to a lesser degree, I feel you frustration