Sunday, 5 December 2010

Tea and Sympathy

I had a meeting at Jack's school on Friday morning,  This was a "settling in" review and it was at 10am.

Since my car was buried under a mountain of snow, I decided to walk.  It took me 40 minutes as the pavements were piled high with snow and it was a bit slippery.  Not good when you are wearing wedged boots.  This is when I wish I was more practical and had sensible boots for this kind of weather but then I know I wouldn't wear them as they wouldn't be trendy enough. I definitely suffer for my fashion!

Well I arrived, 5 minutes late, wind swept and interesting, only to discover the door I usually use is locked so I then had to trudge round to the main door........not a happy bunny.

It made it all worth while though cos when I was passing through the school canteen, a voice shouted out "Lynne" and one of Holly's friends, Diz, ran up to me and I gave her a big hug and then another of her friends, Kieran, did the same  and he got a hug too, much to the amusement of the cooks who were having their break.

Then it was into Kestrel House for the meeting.  Kestrel House is the designated area of the school for the children with special needs.  They still use the schools facilities but the majority of their time is spent there.

It was a multi disciplinary meeting.  This means that as well as the new Head Teacher and Principal Teacher there was also a physiotherapist (Liz), an occupational therapist (Sue) and little old me.  These meetings can be quite intimidating but as the years have gone by I have grown used to them and so I usually go alone but you can take a designated spokesperson with you to speak on your behalf if you find it hard to put your point across or get a bit emotional.

I have known Liz and Sue a long time and they know Jack very well.  They remember the child that he used to be but the new teachers only know the Jack that we have today.

The meeting started off pretty well and it seems that there are to be a lot of changes in Kestrel House, mostly because they are not meeting the needs of the children who use the facilities.  As is usually the case, Kestrel House, when it was built 15/20 years ago was only supposed to accommodate 15 children and now it accommodates at least 25.  The facilities have never been updated, not so much as a lick of paint or new equipment and it needs to be dragged kicking and screaming into the 21st century.  There are a lot more plans afoot but I have been sworn to secrecy, but you know that as soon as I know, you will too.

One of the reason the school is not meeting Jack's needs is because when Jack started school at 5, he was classed as a category 5 pupil which then entitled him to one on one help at school.  Over the years, Jack has lost more and more skills and now requires help with all areas of his life and so therefore it takes more than one person to help him at school.

During the meeting, I asked was that the highest category or was there another one above that and I was told that yes there was one called "exceptional needs".  I was taken aback cos I had always been led to believe that category 5 was the highest!  This new information means that the school can then go back to the Education Dept, review the situation and request more funding.  The meeting with Education is next week so I am hopeful that Anne, the new Head Teacher is successful, if not I told her to tell Richard Donald, Head of Education, that if he doesn't give us what we need, then I will personally kick his butt!

Do you think he will be afraid?  Not a chance but as he used to be the Head of Jack and Holly's old school, he does know me and knows that I don't make idol threats! Tee hee hee.

Then the subject takes a turn to Jack himself and what is going on with him.  I take a deep breath and tell them the latest news about his Genetic diagnosis and Liz, who is as sharp as a pin, ask THE QUESTION.

She knows that Angelman's Syndrome is life limiting so she asks have I asked the neurologists about that and I said "no, but I think I have always known that Jack's condition is such that he won't live a long life".  To this she replies "do we need to look into Jack starting to visit the Children's Hospice?" and this is when I hang my head, trying not to show my feelings and say "I was in touch a few years back but Jack didn't meet the criteria".  Liz confirms that "it used to be hard to even get a foot in the door but that they have made the process easier now and she would give them a call if I wanted" to which I replied "yes, I would, thanks" with tears streaming down my face.

My emotions are always just at the surface on the subject of my beautiful boy.  I love him so so much and it hurts me more than I can say to face the realities of his condition but I have never been a coward and have always faced things head on and this will be the same.  I am torn really, because once again my instincts were right, that there had to be more to his diagnosis than what I was told and gutted because I so wanted to be wrong.

Liz then came over and gave me a huge cuddle as I was now inconsolable.  They are so good with me.  Anne  nips away and makes tea (the usual tipple of choice we Brits make in a crisis) and Liz just holds onto me, making me laugh through my tears.  By the time the tea arrives, I have gotten a hold of myself and am feeling a lot stronger. The tea is a welcome distraction and the fact that Liz tells me that I am one of her favourite parents!  Awww she is so nice :)

Shortly after, the meeting comes to a close.  Three of them rush off and I am left with Catriona, Principal Teacher and she shows me the secret plans that they have for updating Kestrel House. I am quite chuffed to be "let in the know" and I discovered while chatting to her that she is a fellow blogger.  There was no time to ask any details but I will find out the name of her blog and take a peek, soon.

I left the school and it is break time. I spot Holly, walk up to her and wrap my arms around her and she is all excited to see me.  The kids are having a ball in the snow and James, a wee boy I know, shouts my name and then throws a snowball at me. His friend joins in and he gets a direct hit. Cheeky wee bugger! I pick up some snow and chase him but then Holly and her pal Diz, grab him and I rub the snow in his face!  Oh how wicked am I?  He's not put off though so he tries again, this time when they grab him I stuff snow down his trousers!

I make a quick getaway,before I am pelted with more missiles but no they are not put off and I can hear them running behind me.  I turn and started picking up snow really fast and throwing it and James falls over onto his back............woo hoo, job done!

On my trek back home, I nipped into A & I Supplies and bought a snow shovel and walked home with it.  I was getting some funny looks and comments causing great amusement but mostly I had guys stopping to ask where I'd gotten it from.

Back home, it took an hour to dig out my car and my bum was totally numb!  This is when the tiny,1% sensible part of my brain, fleetingly thinks about the afore mentioned "thermal drawers" from a previous post.  The thought doesn't stay around long as it is squashed by the 99% trendy part of my brain!

Me in not happening!  They just look so frumpy!


  1. M+S Thermals aren't so bad!
    ANd how many people would see them!!
    Well - the chosen few maybe, but those that mind don't matter and those that matter don't mind!!

    It's hard when we get to that stage of facing what is staring us right in the face. I thought i didn't need help fo years - my mother brainwashed me into thinking that there were those out there who were much worse off than us - all the while i'm busting a gut to get everybody to where they need to be all on my own.

    My mother never really accepted that Peter DID have problems and that he did need help and so did we.

    I think you have to be at that stage where you are ready to accept the help and it sounds with the hospice that you are.
    Peter's friend Gordon went to Rachel - the family loved it, and i think it helped them even after he died.

    I'm always here at the other end of FB or an e mail - you don't get rid of me that easy!!!

  2. aww thanks Julie, I feel like I have just been virtually hugged. Big hugs back to you and the family.

    It probably will be Rachel House as there is not a children's hospice close by :)

  3. I hope all goes well...can't imagine the strenght it must take.

  4. Thanks Dad,
    I don't know about strength, all I know is you just have to get through it.

    But god it hurts!

  5. Can I send you another virtual hug? I can not even start to imagine the challenges you face but I just want to know that I admire your strength and attitude. And I reckon it would take a whole lot of attitude to avoid thermals in your climate. Keep wearing those trendy boots.

  6. aww thank you Mynx, my attitude is definitely what keeps me going :)

    As for the blinkin' thermals, I know I must be mad as it is so so cold but hell you have to stay true to yourself lol

  7. One of the most heart breaking things ive ever read hunny :-(
    You've gone thru so much shite but you still smile thru it all and take the time to make us laugh too.
    You're a blimmin marvel and we love you to pieces!!


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