Ladies Camera Club

5 Sep 2007

Day of reckoning

Since May I have made some terrible decisions.

Some I have had to make.

Some that I wanted to make

And some that I made and regretted.

Very few people know about the full extent of what was being expected to happen today, I didn't find it necessary to furnish or indeed burden the world with the anxiety put on us about this particular day.

But all my decisions to come, go, yes and no have all been based on my emotional stability centred around something that happened today.

The timing was rather bad in light of Belle going back to school and the progression of her medical care (which is unsteady).

However.

I went, with Belle to a tribunal to have to fight for her mark on this planet, her identity within the community and a foothold within a system that has failed her.

I didn't want to initiate a tribunal but when the "men in grey" make decisions based on uniform standards, the system kind of caved in on the lack of flexibility. This in turn let Ellenor down (oooh Sunday name coming out there!).

So we had to get our fisty cuffs on and start a fight.

*****

Both Mark and I would do anything for Ellenor.

It is our prime goal in our life.

She really is the apple of our eyes.

We love her so much that it makes us want to cry.

Do you know that feeling?

When you look at someone you love so much you can feel your heart wrenching inside and you get choked up and you just want to protect them forever and love them forever and hold them so tight. You want to smother them with affection and breathe in their scent and kiss them all over their cheeks and look so hard into their eyes to search for that little signal that you mean that much to them too.

*****

You see, the Disabled Living Allowance cant make a decision about Ellies problems because the Medical system can't pin point her condition. The Local Education Authority have no grasp on the finer needs of children with "Mysterious" syndromes - mix all that in the pot and you get people scratching their heads and throwing darts, blindfolded, on a score system to come up with random answers that create tribunals.

Both Mark and I have to fight and fight and fight and it gets to the point where I have nothing else to do but bang my head on a brick wall.

Nobody comes up to you and leads you by the arm for a nice chat about all the possibilities and support necessary for a child like out beautiful little girl.

Nobody volunteers simple solutions to everyday problems.

You really do have to roll your sleeves up and push and scream and beg and cry and bleed to get one rung on the ladder of acceptability, reliability, sensibility or indeed responsibility.

I know I am talking like I expect you to understand and for that I apologise, bear with me. **Those with children who have special needs so know where I am coming from - please holler and help me out please!**

So anyway, we pitched up at the tribunal (part deux, I may add - they couldn't make a decision first time around due to lack of evidence... can I just say that the lack of evidence was a total and utter fake-o fob off. THEY actually hadn't read her notes and were not in receipt of all the facts and they are the ones dealing with the tribunal).

Eeeeeer, where was I?

Aaaah.

I'm not going to go into every detail but lets just say that with the questioning from one Doctor alone I actually felt I was on trial for terrorism. I know its his job to ask questions but we were only trying to get her a mobility allowance to help with getting out and about.

Well.

He wanted to know why this and why that and why the other in such a fierce and humiliating manner.

He was aggressive, he demanded why we didn't use public transport to get Ellie about (Er, hello.... RANDOM and erm - pushchair for starters and the fact we have a car).

He wanted to know why we hadn't seen a certain Neurologist (you tell me, Mr Spitball).

Why Ellie cant walk (You tell me, Mr Vein-popping-out-of-your-head)

And he continued to ask me questions that even a surgeon, clinical geneticist, a dietitian, occupational therapist, orthotist, peadiatry technicia, speech therapist, optician, neurologist, orthodontist, heart specialist, physiotherapist, the frikkin street cleaner, the world and his dog cannot answer. He literally was foaming at the mouth with his questioning and I don't know how the hell I kept my cool but I didn't even cry.

And I always cry.

In fact i wanted to burst out laughing even though it wasn't the slightest bit funny - do you know that feeling?

Perhaps Im hard skinned after all and never knew it.

Pffffff.

I get prodded and dissected by two other people on this "independent" panel. Both asking questions with furrowed brows and peering over their glasses like Im a naughty girl. I swear down I wanted to stand on the table and do the wedgy dance just to lift the emotion. I thought about it but realised that I would have broken the table else. they asked Ellie a lot of questions too, lots of leading, intrusive questions in hope of catching mark and I out. they asked why she didn't play out and did I allow her to play out. They asked her about her feelings and she answered honestly without any interruption from me. I was really chuffed with her. Little love.

So anyway, they asked me to leave the room to make a decision which I did. And we got called back 10 minutes later with Dr Rabid Dog still firing evils in my direction.

**At this point I would like to point out that I am not generally disrespectful but today I am allowed to be judgmental because this guy was a complete and utter *********** - fill in the blanks**

The decision, although not entirely fabulous, was enough to prove that we were not swinging the lead and that being presented with Ellie for them to actually **SEE* was enough to sway them into our best interests - which is Ellie. A result, but at a price. The fight goes on still, this is one battle in a bit of a shitty war.

Flamin nora, Im knackered after typing that.



Well done if you managed to stay awake.

67 comments:

Pol said...

Lordy Kirsty - you've got me crying now. I ALWAYS cry in meetings about my little darling amazing Benjamin. I nearly cried today when I was helping in his class looking at the other kids sat there cross legged looking at the teacher while he is sat facing away from her because he doesn't see the point of having to look at her while she calls the register - he can hear her voice and answer looking at something much more interesting.
Anyhows - no useful advice or wise words - just lots of (((HUGS))) and positive thoughts.

Anonymous said...

Go Girl!

Hullabaloo said...

Hi Kirsty,
Don't really know what to say here as I have never had to go through anything like this but i wanted to let you know that I was thinking about you and I am so proud of parents like you who fight and fight. Us teachers often have our hands tied when it comes to helping kids who need that wee bit extra and you refer them to people further up and then time stands still while experts hum and haw and fill out forms and all the while that child struggles on. So frustrating. So all I can do is send you a big hug down the computer and hope you get what she needs soon. Your daughter is a beautiful and adorable young lady and she deserves the best. Any one of us would do the same for our kids.

Charlotte said...

hugs Kirsty, to all of you xxx

The luckiest mommy of all! said...

You are AMAZING PARENTS!!!

My sister has lived with us for the past 9 years and she is lucky to have downs syndrome -- lucky -- crazy word right!! I work as an advocate for those with the "mystery" disability -- Stay strong you know what you are doing is the right thing!!!

nickb said...

I wish you all the luck in the world-she is one very lovely little girl and a very lucky one for having parents who love her as much as you so obviously do.
It struck a chord with me-I didn't get diagnosed with my disability till I was in my 20's

You keep fightin hun!

Nicole said...

The reason you didn't cry? Because you were protecting your child and being the amazing mother that you are. I don't often comment on your blog, but I read it religiously and I am amazed by the strength that you and other mothers in your situation, demonstrate on a daily basis.

Oh, and I cried just reading your post. Not because I feel sorry for you, but because I am inspired by your strength and commitment in the face of so many challenges.

Sam said...

My blood is boiling on behalf of the 3 of you, it's unbelievable. It sounded like something Dickensian and I have not been living it as you all have. I hope these "grey suits" can remove their heads from their butts long enough to see sense. Jeez, maybe Belle should throw a brick through a shop window or mug someone (joke) but think of all the money and "help" mobilised for those who break the law.......... SHEESH I need a lie down after that rant!

Anonymous said...

Hi Kirsty
Today we said goodbye to a relative of mine. She had been disabled all of her life but completly wheelchair bound since medication for an illness affected her mobility - this was a recognised side effect with an antedote, but because she was already disabled they refused to believe there was anything extra wrong when she said she couldn't walk - after all she had had problems walking before. There are so many stories I could tell, but she fought for disabled rights all her life. A dear friend of hers said at the funeral "when she reaches the stairway to heaven, she will be there demanding of God why there isn't a stairlift installed - after all disabled people have as much right to access and mobility as anyone else."
Good luck with your fight and know you are not alone.

tjc designs Craft Cabin Blog said...

Hun, I am sooo sorry you have to go through this and wish with all my heart I could take away some of that heartache much loves and hugs to you and Elles Belles and I am so proud of you for standing up and fighting - you are an inspiration not only to your little Ellie but for all of us too x

Louise said...

I don't pretent to know how you feel and what you go through, but I would like to say that I have the greatest admiration for the love and endless support you give your little girl.

I have a good friend who started her family in her early 20s - she seemed so young to me at the time, but God she has grown wise during the last 11 years, her child has problems caused by a difficult birth. Her and her hubby have had to fight tooth and nail for the simplest thigs for him - like the right to attend the earest school, the right to speach therapy, I could go on and on. She says similar things to your post, having to face panels of experts, having to do all their own investigations into what support is out there (I hesitate to say available because it just hasn't been for them - without a fight) no one has ever said to them, do you know about this....

They both work hard,they don't ask for money, just reassurance that their child gets the support he needs and deserves.

If you'd have asked me 11 years ago could they cope, I'd have said no, but she has been amazing. I'm not religious, but I do believe that special children deserve special parents or carers and my friends child and your Ellie, really have them.

Angela said...

I don't what what to say. I wish I could help. I just feel sad that you have to fight for your case.

I have total admiration for your strength. I know you will carry on, because you have too, because you are Ellie's parents and she deserves it.

That little girl is SO lucky that she has such wonderful parents.

Huge hugs :-)

Those are gorgeous pics by the way.

Eleanor said...

I stayed awake, chickie, and whilst you didn't cry, testament to the strength you draggged out of the fibre of your being today, I and many others reading this surely did. I'm hollering for you, and for my namesake, and for all our precious tender flowers. Why that man sounds as though he hasn't an ounce of compassion in him, or the ability to recognise honesty and integrity, and genuine need, in front of his nose.
Yes, the fight will go on, and you must make sure it makes you stronger, more united and more determined, and doesn't grind you down in defeat. For now, gather your little family around you and be secure in your love for each other, and in achieving something today, however small.
love Ellie
xxx

Anonymous said...

I sure did manage to stay awake!!! Injustice and inequality and ignorance from those who should know better just get my goat. You fight for what you need my girl - I just hope that there is enough beauty and tranquillity in other areas of your life so that you can recharge your batteries - because I know from first hand experience how utterly exhausting such fighting can be. Can I mention also that I am learning to use a semi decent camera for the first time in my life - and I aint young! I read every magazine and article I can get my hands on - but it was looking at a glorious photo in your blog a few days ago that the penny dropped - aha - NOW I see what they were talking about! Leading eye in focus - hmmmm! Maybe one day I can figure it out - for now I just stare in awe at yours!

gertie (aka aine) said...

repeat after me "they are fuckers, the lot of them".

you keep fighting girl, dont let them and their attitudes back you down.

Derek said...

I understand that all consuming need to do what it takes for your kid,and doing ti with Energy you didn't know you had. That ability to ask "how high" when the powers that be say "jump", to get what you want for them.. You are fighting the good fight.

"go to the mattresses"-the Godfather.

kerry lynn said...

good for you!!
you are amazing parents!
just keep on fighting! as long as you do what is right for your girl and your family... that is ALL that matters!!
all my love and support!
xoxo

MiKiko said...

Kirsty, you're a wonderful Mum!!!
Way to go, girl!!!

Brook said...

One of the reasons that I love your blog is to read about Belle's progress. I have been teaching children with special needs for 20 years. I have also had a child who was served by Special services. I indeed had to fight for him because his disability at the time wasn't apparrent other than his size.
If you were here in the states I could take care of you and tell you exactly what to do. I wish I had an educator friend in the UK to help you.
You can so email me with more specifics and I may be able to help you gather up some ideas. I may be able to tell you some things that I have done in the past.
You are your child's best advocate. If you don't fight for her, who will. She deserves the best. Let me know if I can help.

Deanne said...

Hi Kirsty
Its ridiculous isnt it, you shouldnt have to go through hell like that.
I've had experiences with my dad and a tribunal and it was soooo not nice, they are horrid people, who I'm sure just get a kick out of talking to the everyday person like shite!!!
Good on you for not breaking.
All the best with the next stage. x

Kate said...

You do whatever you have to for Ellie. Forget what the suit wearing dolts have to say. She's your #1 priority and you'll know what's best for her. Keep fighting!!

bl said...

You are fighting the good fight, doing all you can for your beautiful daughter. Best of luck to you all!

Lilaclady said...

typed words are light weight, but my heart and tears are heavy for you. At least the horrid interview is over for now. Keep your chin up love, you should be plenty proud.
((Hugs))

Brook said...

http://www.amazon.co.uk/Special-Education-Handbook-Michael-Farrell/dp/1853469742

Been searching for something that might help you. This book looked pretty good.

cbwetfish said...

You, are my hero. I had you on my list for one of my absolute favorite artists/photographers and women in general that I've come across in cyberspace, but now you are my hero. You make me appreciate my healthy children and you make me want to fight for children like your little girl.

I leave you with a few quotes that seem to fit right now...at least for me, after reading about your struggle today:

Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit. --Napolean Hill

Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be. --Samuel Johnson

You can become blind by seeing each day as a similar one. Each day is a different one, each day brings a miracle of its own. It's just a matter of paying attention to this miracle. --Paulo Cohelo

Peace,
Cyndi

Sinead said...

Good for you, Kirsty! First of all, gorgeous pictures of Ellie--I love that you were able to catch pictures of her looking at the camera without her glasses on.

Secondly, WTF is a school board thinking?! ugh. (((hugs))) to you. Glad that they made a favorable (at least for now) decision. I know that this is a hard fight, but with every struggle and battle, you're showing Ellie how to stand up for herself and demand her place in the world. What better role models could she have than you and Mark! Way to go!!

(oh, and I echo Gertie's sentiment, too!)

Anonymous said...

Hi, Kirsty. I'm so sorry for all the pain you must be going through. Yes, it is an awful thing to have to fight and explain things that you as a mother know by heart. It is equally gut-wrenching to have to defend yourself as a mother and shout to the world that you're doing the best you can. I wish you all the best and hope that these evil people suddenly unmask themselves as having something that resembles human. May you have more strength and courage. Nina

KarenB said...

I read your blog regularly and I have never commented before. But after reading this post I just have to say that I wish you all strength and faith to continue to fight for Ellie.

My daughter has special needs too, and even though she has *finally* been diagnosed she still falls through the cracks in the system and the fight is ongoing to have those needs recognised and upheld.

Good luck.

Debbie said...

eerrrrrrrrrrrrrrrrrrr - flippin eck! That was some day!!

SuzyB said...

Repeat after Gertie, she hit the nail on the head. Lubs you shit bag xx

Heather said...

Tears and tears and tears, can't believe what the system make us go through to get the needs of our children met!!! I know she has always been the centre of your world and will remain so. You all deserve the support you need, we all do and I could write a bloody book on the subject. I send love and prayers to you all that little gorgeous Ellie finally gets what she rightfully needs. Not going to comment on arsewipe independent panels Grrrr!

Kerry said...

Hugs to you all. I so definitely know where you are coming from but like you say only the parent of a special needs kid who has had to fight knows how crappy the system is. Keep on fighting and don't let them wear you down.
xx

Cath said...

Anyone who reads your blog would fight along side you.
Hugs to all of you.

CoCo said...

Hopefully even better will come of all this for you, Mark and E. I don't have any first hand experience but my heart goes out to you - it's awful when you see how much money and time is wasted on the admin side of health issues and then genuine cases have to go through the mill to get anywhere. My mum is a mainstream primary teacher but was hoping to get into special needs teaching this year. Their school needed one child to be allocated 4 more hours per week in order for the school to be allocated a full time special needs teacher. Yesterday a 'grey suit' over-ruled a speech therapist and psychologist and wouldn't agree to the extra 4 flipping hours...they are going to fight it too. What is wrong with these people?!?! Chin up, keep smiling and lots of positivity - hugs to y'all.

cliffordandco said...

I think you are doing an amazing job and the love you have for Belle just shines through. The system sucks here in the UK at times, when you do your best for your children and are made to feel like a criminal, yet others seem to get away with blue murder.

Keep up the good work and don't let them get away with anything.

Lynn

Di said...

I don't really know what to say other than I think you are both incredible parents... fighting the good fight. You just have to keep on keeping on.. that's what we do as parents.. And believe me.. it doesn't ever stop.. that feeling of loving them so much..*hugs*

leewoodside said...

You go girl!!!! Hugs to you all. xoxo

Jo said...

Hugs to all of you for being so strong - you're an inspiration Kirsty.

Jo xx

Flapsi Hapsi said...

Hang in there hun! You're fighting for your beautiful Ellie's rights and she is lucky to have such great parents. I know the system can be major frustration and wish you all the luck (and patience) in the world with it. Lots of hugs.

sharon said...

how is anything gonna change in the world..if the likes of you, me and am sure lots of ladies reading this,don't stand up and be counted.
You have decided to go down the rocky path, lots of us don't, some of us prefer to stay on the smooth surface..(and there's nothing wrong with that)..but we need people like you, so I take my hat off to you.x..your daughter is a very lucky, gorgeous little girl..x
(you don't need me to tell you that though)hehe...keep strong!

Kae said...

I've deleted 3 times what I'd written - just don't sound right... I wish i had your way with words. Anyway, instead of rambling on I just second what everybody else has already said. You are an amazing woman and mother!! Keep fighting for your gorgeous girl.

(((Hugs)))

~x~

Christi Snow said...

((((hugs)))) to you, Mark, and your gorgeous little Ellie!!! You are a remarkable mother and if they can't see that then they are idiots. I am so sorry that you continue to have to fight for her rights...it's just plain wrong that it is such an on-going battle for you all. You are an amazing mother!!! smiles....

LPinky said...

I cannot even begin to imagine what the 3 of you must be going through, but the fact that you are still fighting & are prepared to fight for your girl is just a testament to what amazing parents you are. & as for the a*******s on the tribunal, well i bet Belle has more compassion & respect for others in her little toe than they have in their entire bodies. xx

Susan Pryce said...

Thinking of you Kirsty, good for you fighting for whats right. I am so proud of you...

amber jane said...

Hun yoou know that my heart breaks for you over the fight you Ellie and Mark have to suffer just to be recognised but you are an amazing Mum and if anyone will fight to the death for her girlie it is you - as others have said you go girl - luv you xxx

Kelly S. said...

I hope you get the answers you want! What a lucky girl Elly is to have parents who fight for her. Keep fighting, it may take awhile but you are doing the right thins. (((hugs to to you and your family))))

JenBreeze said...

Hugs to your family. May Belle continue to inspire you, and the rest of us, to stand up and fight for what is right. Wishing you continued strength.

Time for change said...

{{{{Ellie}}}}}, {{{{Kirsty, Mark}}}} You fight the good fight, momma! You're doing a great job. It's the 'system' that has the problem. My children don't have special needs--one, however, chose to rebel the system for a while so I've had to fight the system for him. I'll continue to keep you & your sweet family in my prayers. All the bestiest best to you all :)

Sally R said...

Kirsty, it stinks, the whole system stinks and the only way we can protect our own is to do what you so bravely did. Ellie is so blessed with you as parents and for having the guts and energy to keep on keeping on (and boy do I know hard that is)

My DH is still trying to get some acknowledgement of reponsibility for the disease which he has and which is killing him. It can only be caught through the use of asbestos in buildings. He has lived all his life in MOD housing (even as a child) and has worked for 33 years in the Army. But he is fighting tooth and nail for some kind of compensation. Because of the Crown Immunity Act, neither he, nor his siblings (also dying of the same disease) can receive a penny for the pain, suffering nor indeed the loss of those years with their wifes/husbands and kids.

So we too are going to court, fighting the fight. Being treated like leaches on society. My kids will never have their dad at their wedding or see him with their children and we are supposed to just say "That's fine!"

Hell no! And just like you I shall fight every inch of the way and I shall think of you as I do it.

Go girl!

Anonymous said...

Of course, you fight for your child. If you don't, I assure you, no one else will. You have been blessed with a precious and beautiful girl. And she has been blessed with exceptional parents!
Jan

cheri said...

Kristy! I am so proud of you and Mark and especially Ellie! Fantastic sticktoidness! You've done good, girl!

Darcy said...

wow go you!!!! and your beautiful lil girl. I read to the end and was in tears, well done for finding the strength to fight. x

Anonymous said...

Don't ever doubt - you are a wonderful mother.

bonnette said...

Don't know what to say except for: Ellie and her wonderful parents are in my prayers. Keep up the fight and Recieve a genuine hug ((()))

BelindasScrapz said...

Lots of hugs to you. The system is so different here. I dont know anything about yours. Here if that were happening we would have to have either an advocate for the child or a lawyer to get involved. I had a "special needs" son due to behaviour issues and he was not even close to the issues your beauty has. I wish I had miracle answers for you all I can offer you is huge hugs and my positive thoughts. Your belle is a beauty and you are a wonderful mom to her
Belinda

Kim said...

I can't beleive what they put your family through, your darling belle, I want to cry,

I know some of what you are going through my husband had a severe stroke a couple of yrs back he was just 40 when it happened, they didn't bother with speech therapy said he would never talk again anyhow, well I gave up my job and got loadsa books and taught him myself, and today he his speech 99% normal, when they sent him home, the DLA peeps sent a doctor who insisted that he get up and walk to prove he can not I said you have hosptal documnets there that say he is paralysed down the whole of right side and will never walk again, what is wrong with you, he said well fraud we have to do it, I said FRAUD you got those from the hosptial consultant not me, my Poor Paul had to try and stand up and nearly keeled over, to the horror of this stupid Doctor who couldn't get out of my house quick enough.....

You go girl with all your might and never let go until to get what Belle truly needs...

I just love the first photo in this post Belle looks soooo gorgeous, my 13 yrs old thinks she looks like a real angel from her birthday card..... go Belle we love ya!!!!

Krista said...

Way to go momma! You are so awesome and I love the kind of momma you are. You blog moves me and I can't miss a day:-)

Sue Nicholson said...

I think everyone before me has said it all.

A mother's/father's love is the strongest there is. When their cub is threatened, mistreated etc the power to move mountains rises up within them.

Goverments and beaurocrats totally under estimate this. Fools to not see what's before their very eyes.

Go for what's rightly yours Kirsty.

Sue

Made by Mandy said...

What an appalling way to treat you and your family. They certainly didn't sound like they were independent in any way. Congratulations to you for staying so calm, that must have took some doing. Can't blame you for fighting for Belle, she is a beautiful girl and someone to be very proud of. I would fight tooth and nail if I was in your shoes, it seems like no one is making it easy for you and yours. Bloody NHS !!

MintyMocha said...

I am DISGUSTED at the way Ellie (and you and Mark) have been treated through all of this. She is a special needs child who has SPECIAL NEEDS! Jeeze people, do you really need to have her displayed like a zoo exhibit. How degrading for her. I would have wanted to ram his teeth down the back of his foaming mouth. I'm proud you managed to keep your cool for I don't think I could have. HOW DARE HE?! GRRRRRR. All said and done, I am glad they are taking steps to imrpove things in your favor though. But what a palava to have to go through to get there. It's just so wrong. *hugs*

Jan said...

Kirsty, I KNOW how you feel and what you are dealing with. I, too, am a momma bear/lion who feels she has to protect her daughter and fight the world and everyone in it who just can't understand what we are going through. My daughter has a chemical imbalance that causes fears and anxieties beyond anything a normal person ever has to deal with. I'm told all the time how I should be "making" her do this or that or the other. No one seems to give me credit for living with this day and night and for having learned, very painfully at times, just what is happening to my little girl and what she is dealing with in her life. Those who have never had these trials in their lives can not possibly understand what you and I deal with on a daily basis. There is just no way. And I can't hold that against them because sometimes I myself am still learning about it all. So if I haven't learned it all yet, how can I possibly expect everyone else to understand.

Anyway, I think my situation allows me to understand what you are going through. And I'm SOOOOOO glad this year in school is starting out on a great note for your daughter. That is so exciting. I share your joy in it. You keep on hanging in there. I think you are doing a great job. And take care of you too. We momma bears sometimes reach a point where the world becomes too heavy for us to keep fighting off. I know that from experience too.

Sorry this is so long. I wanted to email you privately but couldn't find a link to do that.

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