Furious at the System!

Rant time!As a family with a disabled child we are entitled to several benefits but by god they have plenlty of loop holes to ensure you don’t get them!!Firstly i applied for carer’s allowance as i am working as Finlay’s full time carer.  This was all straight forward until i got myself a little evening job to keep my sanity.  I am now no longer entitled to carer’s allowance as my earnings are over the £95 weekly limit!!!!!!!  This makes me mad as it’s just over the limit and i am still caring for him through the day!!!  I work when his dad comes in from work!Secondly, we are allowed to apply for direct payments to allow us to pay for some respite care.  This all seemed great and our plan was to pay my mum (she has him heaps through the week to let me get stuff done) but we are not allowed to employ a family member.  Personally i think this is a total oversight on the Governments part as who better to look after your child than a family member who fully understands their needs???  I also feel rather strongly about my 3 year old being handed over to some stranger who we’d have to put through a disclosure, full training and pay holidays etc.Do you think the people who make these policies up actually have children or even an ounce of common sense??I feel so let down by the system but i’m starting to think that’s their plan – make folk so annoyed that they decide it’s not worth the hassle!BIg huge scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have a great family

I am lucky enough to have a rather large family!  My Aunt Elizabeth and Uncle Dick have been very busy organising several events to help us raise funds for Finlay.If you are anywhere near Shotts then why not take a run through for the Bingo afternoon on Sunday 9th August or the Social Evening with guest singers on Friday 4th September.Tickets are very reasonably priced and there will be fabulous tombola prizes on the night.Hope to see you thenps Thanks for all your hard work Aunt Elizabeth and Uncle Dick!!! xxx

Catch up

Hi folks, sorry i’ve not kept this up to date recently – i seem to be busier than ever now that i’m not working!We’ve had an excellent month.  Craighalbert was brilliant and Finlay and I are into a good routine with the exercises and advice we were given.  Cerebra (a support group) have granted our funding for this year’s Craighalbert!!!  Amazing!  Let me explain.  We applied for the Cerebra grant before we knew how much the fundraising was going to raise.  We weren’t expecting to get anything from them so you can imagine how delighted we were when the letter came through. So you must be wondering what we are going to use the fundraising money for.  We will always keep some aside for future trip s to Craighalbert but it means we can now start seeing reps about other equipment Finlay desperately needs.  We thought we would have to wait until after the ceilidh before we could investigate the cost of other things so it’s a huge step forward.The first rep we are meeting is for a sleep system and a potty so we can the wee man out of nappies and stretching while he’s sleeping – i’ll keep you updated on our progress.Extension – we have finally got our plans back from the OT so we can get moving with the building warrant plans and get some quotes.  I think the extension may have to wait until next spring as i really don’t think i want building work happening over winter, watch this space!Money – we have a very healthy bank account at present.  At the last pay in we were sitting at 5000!!!!!!!!  This is fantastic and i can’t express my gratitude to you all.


Finlay and I are just home from a week at Craighalbert and we are both shattered!

We had a fabulous week and i learned so many new stretches and exercises to help build up his muscles – i only wish the staff up here were as proactive and up-to-date with preventative measures!Finlay found the course pretty tiring but he worked really hard and i see a difference in his stability when sitting so hopeully we will continue to build upon that.  He loved the sessions in the hydrotherapy pool, he can (in his words) “swim like a fish!!!”  He’s such a clever boy!Next session is booked for September so we have a lot of work to do over the next few months so we are ready to take the next step.If you have any questions about what we do please ask or use the links to look at their website.

Money Update

What a bunch of generous people we have in this world!

Okay the bank account is looking really healthy just now.We had a very generous donation of £500 but unfortunately we have no idea who it is from.  If it was you THANK YOU!!!

1981 reunion group have kindly donated £250

We have had loads of other donations from people who didn’t make the Fit for Finlay day approximately another £400.

Parade shopping night was a great success too! We have a cheque winging its way to us for £169.  Thanks to all who treated themselves.

All in all if has been amazing and we are so grateful for all the donations regardless of their size.


Rafffle Winners

Flowers by Lesley montly bouquet – Paula Clyne

Massage – Keith Louden

Body Pump/Combat voucher – Graeme Robson

Angel Tarot Voucher – Diane Low

Newton Arms Meal voucher – Paula ClyneBody

Attack/Balance Voucher – Sarah Blackaller

Auntie Betty’s Decorative Boat – Jennifer Anderson

1lt Gin – Susan Keillar1lt Vodka – Joanna Blake

1lt Whisky – Jennifer Stephen1lt Baileys – Rita Peacock

Botox Injections

Well we had the botox today and Finlay was  a super star.  He was so relaxed and happy when he was being examined – that was before the sedation!!!  The doctors took a look and agreed that the botox could be used in several muscles but due to Finlay’s weight (he’s on the small side!) they had to go for an area that would have the best impact on his life.  After consulting us we agreed that he would get 2 injections in each calf muscle.The sedation went well, he was out of it fairly quickly so the injections went ahead.  He wriggled a wee bit when the injections were fully in but the sedation means he won’t have any memory of the event. The doctors were very happy with the way they went and we were home by 1.30pm.  Finlay has slept most of the day but is now eating a large dinner of chicken pasta to fill his empty tummy.As yet we can see no change but we will hopefully report more through the week.

First meeting of Finlay’s Fund

Well the bank account is finally open and we have a date set for the first official meeting of Finlay’s Fund!  Everything seems to be coming together.First meeting to be held on Thursday 30th April 8pm.If you wish to join the commitee please drop me an email through the contact page and i’ll give you more details.


Finlay has been offered a date for botox treatment!  We have a clinic date for 5th May 2009, we’re so excited about the possible outcomes.Hopefully this treatment will sort out the over active muscles in his legs and let the underactive ones get a look in.  With any luck this will make him more relaxed and easier to handle.Watch this space!

The story so far…

Finlay was a little impatient and joined us 12 weeks early.  All was pretty straightforward in the hospital – Finlay sailed through all the rooms without catching any infections and it seemed easy in comparison to what other parents were dealing with.He got home from hospital at 8 weeks old and he was just like any other newborn.As he got older we began to notice he wasn’t meeting the milestones and we had a gut feeling that something wasn’t right.  After many appointments, lots of worrying and being made feel like a neurotic first time mother we were finally told that Finlay was suffering from cerebral palsy just after his first birthday.  It’s strange to say but it was a relief to finally be told there was something wrong! We didn’t really know what this meant for us as a family, as we didn’t fully understand (and the doctor wasn’t the best at explaining or reassuring us!!!) so it took a while for it to become clear how it would impact our family life.  To be honest i think it’s only now that we are seeing the true impact as he’s getting too heavy to carry everywhere!As Finlay grew and milestones continued to be untouched we knew our life was going to be ‘different’.  Equipment started getting delivered taking up most of the house and appointment cards dropped through the door every second day – or at least that’s what it felt like!  We were finally in the system so Finlay’s needs would be catered for.  How wrong could we be!?For the last 2 years we have had to fight for nearly every inch of care.  ~At present we have not had an Occupational Therapist for 7 months and we have only had 3 physio sessions this year when he should be receiving both of these visits weekly.  Every time Finlay needs a new piece of equipment (chair, standing frame) we have to go through the awful process of meeting reps, getting quotes, getting approval and then getting delivery.  This process can take up to a year by which time he has grown and the piece of equipment can sometimes be too small.  Unfortunately the lack of communication with the team who are ‘looking after’ us has meant we have sourced equipment ourselves and looked for other methods of him receiving his much needed therapy.  This all comes at a cost.  His specially adapted bike cost 1300 and a week long therapy session at a specialist centre costs over 500.Friends and family have watched Finlay thrive with the basic care and can’t help wonder where he’d be if he had the care he is entitled to hence the fact that we have got together and decided to do something about it without the support of the council.I hope this gives you a picture of the start Finlay has had, however, I must point out that he is a perfect little boy.  He lives life to the full and we try to let him access a ‘normal’ life as much as physically possible.  We that with the fundraising we can allow access his environment more fully with better equipment and greater care.