Where Did 2014 Go????

It's Hogmanay here in Scotland. New Year's Eve to everyone else and as it gets closer to the end of the year my only New Year Resolution is to try and blog more, as let's face it, this year has been a bit dire!

In my defence, I have been struggling.

I haven't been able to pick myself up since last Christmas when Jack was in hospital and ended up on CPAP. I had coped with all Jack's horrendous health issues up til then but this one just undid me. He has taken to the CPAP without a problem but for me it was the "straw that broke the camels back". I have struggled to pick myself up this past year and at times feel like I am walking through quick sand.

Add to that, Holly's illness and it has been hard at times to keep a smile on my face. But I do!

You know it's bad when you avoid Jack's palliative care nurse cos you know that you will cry if she asks how you are!!

Winter is a tough time anyway as Jackyboy fights off all the winter bugs so most of October and some of November was a write off as he was ill with a chest infection that would not clear. After 3 lots of antibiotics, he was put on one which I had to give him for 2 weeks whilst keeping him out of direct sunlight. You'd think that would be easy enough in the winter but no. The winter sun liked to stream through my living room window so for two weeks we had to have the curtains closed so that Jack didn't have the side affect of sun burn!! Such fun.....NOT!

Jack's seizures have also become a worry again so he has been started on a 3rd medicine to try and calm them as they are quite fierce, long lasting and he likes to not breathe during them! Nothing like keeping me on my toes.

To add to the fun, Jack is having more episodes during which he just doesn't breathe whilst asleep during the day now too and the soft collar which the hospital gave me is no longer doing it's job as it isn't deep enough to keep his head in the right position to keep his airway clear. The Physio gave me some more but they were the same size so I think I am going to have to get creative and come up with my own version.

BUT.....on the plus side, despite all that, my boy has gotten so tall and he has filled out! That boy has major muscles on the upper half of his body. It's all that rolling around on the floor and lifting himself up into a kneeling position and the wee monkey is even attempting to crawl! He has astounded everyone with his ability to bounce back, no matter what life throws at him.

Holly and Jack having a moment

With my girlie at the zoo on a  Rachel House day out

and with my boy

 

Jack showing just how much balance he has...check out the muscles!

 
Just tonight, I was wiping his mouth and he took the cloth from me and tried to do it himself! Holly and I couldn't stop smiling and then later when I was cleaning his mouth out using mouthwash and a toothbrush, he reached up and took it from me moving the toothbrush around his mouth himself!!!

My heart just melts every time that gorgeous boy of mine shows an interest in helping me. It might only be fleeting but I hug it to me and store it away in my heart to sustain me during the harder times.

We have also set the ball in motion re Guardianship of Jack. Now that he is 16 and classed as an adult, in order to make decisions on his behalf I need to apply for guardianship. Hopefully it will all be done and dusted by his 17th birthday and that will be another stress out of the way.

In October I applied to get on a course as an assessor for Scottish Vocational Qualifications where I have to put two unpaid carers through their SVQ in Social and Health. Also connected with that, I had a trip to Glasgow to attend the award ceremony where the Moray SVQ Centre in partnership with Quarriers Carers Support Group won two awards for their work putting unpaid carers like myself through that qualification. Since I was one of the first carers to get their award and subsequently the first carer to get on the Assessors Course, I was invited along!

My pumpkin for Halloween

It was so much fun. I even wore a dress... gasp shock horror! The presenter of the ceremony was Kaye Adams from the TV show Loose Women and she took a real shine to my shoes bringing them to the attention of everyone in the room! So when we won the award for Innovation my shoes got centre stage much to Kaye's delight. Later I had my photo taken with her but instead of standing next to me, she got down on her hands and knees saying "I bow to the shoes"! She was so down to earth and such a laugh. That was the highlight of the evening and the cocktails at The Corinthian was a close second.  I know how to party ya know!

My red shoes!

Kaye Adams bowing to the shoes!!!

The course is hard work, time consuming but also very interesting. There was a moment, about a month in, where I thought "whose bright idea was this???" If it wasn't for my sister, who has moved back home, helping out with Jack I would have fallen by the wayside long before now.

I have met so many interesting people through this course and I am really enjoying helping my candidates who have already realised that I am a bit mad! But fun with it!

December was such a busy month that it passed in a blur with Jack having 3 hospital appointments in one week! What is that about eh?

Christmas was quiet but lovely. Jack partied til 11.30pm even though in the run up to the day he was alseep by 6pm every night. We also went to the panto at Eden Court in Inverness and we got moved to the House Box as Jack's view would have been restricted in the seats we had. They were so lovely and we very much appreciated it.

Christmas mugs...you just gotta have them

Holly helping Jack to open his presents

Sporting his Batman onesie...a christmas present from his Aunti Kathleen

Pirates of the Caribbean spoke guards to pimp his wheelchair

Personalised Wheelchair number plate.....what a cool dude!

As 2015 creeps closer Holly and I have decided to take the bull by the horns and take Jack to Disneyland Paris for Christmas next year. He got loads of money for his birthday and the last two Christmases so we may as well spend it on something that we will always remember.

So as 2015 draws to a close, I want to wish you all a very healthy and happy New Year. I hope you continue to share this roller coaster ride with us and I look forward to sharing more of my crazy world in 2015.

Qualifications and fighting the good fight!

Today I went to a meeting organised by the local council and Quarriers Support Group for Carers.  I don't often go to support group meetings to be honest, as usually Jack has a hospital appointment on the day.

This time, I made a special effort cos this was a meeting to discuss the possibility of unpaid carers gaining a qualification for the work they do looking after a family member.  This is a pilot scheme and if it works then it will be rolled out across the UK and many more unpaid carers will benefit.

There are 8 carers, me included, who are interested in this new scheme but as it is a "pilot" scheme, there are only 3 places available!  I was gutted when I heard this but a little more heartened when they said that the course can be completed in 6 months or less so as soon as 1 person finishes another can be started.

The SVQ (Scottish Vocational Qualification) assessor comes to your house and watches you in your caring role doing specific tasks ie peg feeding, bathing, dressing, communication etc and marks you. There is some written work but no essays (yipee!) and the written work is based on your everyday caring role.  The best bit of all, is that the course, costing £2000 per person, is being funded by the local council so it wont cos me a damn thing.

Win win situation me thinks!  So watch this space and fingers crossed that I get picked and I can finally get recognition for something that I have been doing for 12 years, unpaid.

Mind you, if I am honest, I could think of better things for the council to spend that money on!  Which brings me to another snippet of good news I was given on Friday.

Two years ago, the special needs holiday play scheme and weekly clubs in Elgin were under threat because the local council had withdrawn a substantial amount of it's funding to the charity that ran them.  A meeting was held and parents of the children who used this scheme were given all the relevant information and two of us, myself and a friend, Moira decided to fight it.  We organised meetings with parents, local councillors, invited the local newspapers and basically highlighted the dire need for this scheme/weekly clubs and how much our children benefited from them.

As Moira was a bit more camera shy than me, it was mine and Jack's pictures that were used in all the newspapers and I was even interviewed by our local radio station - that was really nerve racking! The upshot was a meeting with councillors at Moray Council, where parents got to have their say and express their concerns.  It was decided that if the charity in question could not provide the exact same service for less than half the money, then the council would take it in-house and they would run it themselves.   I was adamant that if this was to happen, then we, the parents should be involved from the advising process right through to the set up.

We met every month for 9 months, hashing things out, often it was just myself, Moira and a council employee.   The council wanted the charity to take on the task with the reduced money and they said they couldn't but finally at the 11th hour they agreed and the deal was signed and we had our play scheme back.

Great news all round but I had spent nearly a year fighting for a play scheme that Jack was only going to be using for a few months more, as once he was 12, he was too old for it and there was nothing else for older kids. While we were involved in the advisory part of setting up the new play scheme, I had raised the issue of raising the age group and the council were keen to look into it but when the charity took it back on, they were only willing to take on the play scheme as was.  So that was that. Ya think?  Yeah right!!!

We still plugged away, nipping the heads of the play scheme managers and did get a follow up in the papers but then we got tired!  There is only so much you can do!

BUT this week I was told that the charity had applied for funding for a play scheme for age 12 and above.  Funding that will last for hopefully 5 years and the council will financially support them too!  Obviously our nipping of people's heads and constant exposure of the isolation of children with special needs has hit a nerve.

I am over the moon but I am not willing to give them a "high 5" just yet until everything is in place and it is all signed, sealed and delivered!

And Jack can finally have a social life outside of home and school cos I am pretty sure he is fed up looking at my face all day long!