The Giraffes Neck

Authentic BeautyWhen I was in the cosmetics industry I went to the same training session about personality profiling three maybe four times and each time came away feeling deflated and didn’t like the label I had been given. The course had no effect on my sales or management skills as I just didn’t get it. Why do you need to put people into boxes and expect them to behave in the same way day in day out – It just didn’t sit with me.

Fast forward a few years I was attending my coaching training, Once again sat in a training room with a profiling system, a set of enthusiastic peers and a mentor telling us which box we sat in “most of the time”. So I did what everyone else did in the room I paid an amount of money to become certified.  And I am certified DISC profile consultant. Yay me!  I have never used the profiling tool – I should have followed my instinct.

Fast forward almost a decade (I know I am sure I’m not that old) Here we are 2015 surrounded by boxes and types and expectations of how someone should behave due to a symptom, disease, diagnosis and so forth.

Mum has dementia, and there are lots of boxes there to be ticked – it’s not just dementia it is apparently three different variants of dementia. Not one to do things by half is our mum.

Then there is our girl, funny, bright, loud, tenacious, opinionated, determined, very loving, very serious, excitable, caring, awkward, clumsy, and maybe, well OK  probably on the autistic spectrum. We say maybe because there is no diagnosis. But as parents well, you just have a feeling and a niggle. So you get some advice. Referred here, referred there and before  you know it there are meetings to meet at, there are profiles to profile, assessments and forms to fill in, so many forms and so much confusion, did I mention the  confusion?  There are so many words and such long periods of waiting between appointments and so many different departments.

My Dad says she is a character – a one and only. He knows his stuff, six kids, 18 grandchildren, 13 great grandchildren and our girl is the unique one how lucky are we!

We know she has problems with speech, reading and writing that’s always been an issue.  At first I was so worried. She didn’t match up to her peers and she certainly didn’t match up to all the proud mummy posts on social media with examples of perfect colouring in and smiley writing. I curse you smiley writing and any form of writing for that matter. But I try my best to see past the academia and see our girl for who she is. An individual, one who we wouldn’t change for anything in the world. Because she sees the world in her unique beautiful way one which we have learnt so much about since she has been in our life.

She is loving and caring. She will run to hold doors for strangers as she wants to be kind to people. She wants to play and rescue animals although she is a bit rough with furry friends sometimes. She is enthusiastic and clumsy this can sometimes be a bit off putting to her peers but did I mention she is tenacious, she will keep going. She has an amazing imagination and vivid recollection.  We once went to see Frozen with subtitles at the cinema, a girly treat. The film started, as the first words were spoken, our girl recited virtually the whole film word for word, I basked in the pride that all the mothers surrounding us were so impressed at our reception aged child was actually really reading the subtitles!

Then there is the quirkiness. Clothes this is the most challenging aspect for me so far, Two reasons.
1) I am now of a certain age and looking for teeny tiny specs of dirt, food, pen etc on clothing is a tad difficult as my eyes just go fuzzy and my arms really aren’t long enough.
2) I am not known for my domesticity and find the whole washing and ironing of clothes a bore so having a child who wants, nay needs to change her clothes sometimes two or three times before we have stepped foot out of the house is tiring to say the least.

Mealtimes are fun (not) she will sit down and decide before even picking up her fork that she doesn’t like it. Patience can run very thin at the dining table.

I read the other day Only compare your kid –  to your kid. Light bulb moment!

As I do that comparison I can see the progress she has made over the past few months her personality is even bigger, her confidence is higher. Partly because I no longer portray a big deal that her reading and writing is so far behind – this is only a small aspect of her. I feel nothing but pride in our girl the progress she has made and the fact that she can recognise the steps she is making.
Remembering to hold her pen and start writing from left to right. She is so proud when she has completed her name and maybe another word or two.

At a recent family workshop held in school. The group was asked what can you not change?  Our girl put her hand up and said “The Weather”. #proudmummymoment
Proud for two reasons.
1) She actually stuck her hand in the air and spoke to the group.
2) That Answer was awesome!!

Teacher was impressed and asked if she could think of anything else She said. “A giraffe’s neck.”
That was my favourite answer.

Is it the right thing to pursue a diagnosis? Remember my inability to pack people into boxes with categories and labels giving them a behaviour type. I recall being in McDonalds once with our boy and he was being a boy and a total stranger came across to me and said does he have ADHD? Nope she advised I get him on Ritalin to sort that behaviour out. That reinforced my aversion to labels and boxes when it comes to human beings.

But our girl is different we know that and we have discussed, thought long and hard and decided yes we are doing the right thing by her. We are getting support, we are getting hints and tips on how to deal with certain aspects of behaviour and yes above all because it will help our girl in the future understand  any issues she may have. She may like being in a box with a label it may give her clearer understanding and enhance her knowledge.

I read a lovely piece on Facebook the other day from a lady called Caroline Boudet she wrote an open letter regarding her daughter. Her daughter was cute as a button as all babies are. She had bright eyes chubby cheeks and lots and lots of hair it was her most striking feature and she also had that extra chromosome.  The lady basically said you don’t call a child with cancer a cancer child, but you would call a child with Downs Syndrome a Downs child.  Sad but so true and something I have been guilty of. So regardless of the box or diagnosis that our girl is given, We will take a leaf from Caroline Boudet’s book and reaffirm that it is not what our daughter is, it is what she has. And our girl has so much other stuff to offer that it really doesn’t matter.

My Dad is so right she is a one off. Yes we are so blessed to have someone in our lives who shows us the world from an enthusiastic, bright, shiny, colourful and funny perspective.  Our life is so much richer and more interesting for having our girl in it. She is our Giraffes Neck and we don’t want to change her at all. But its not about changing or labelling. Its about support, understanding and doing the best we can for our girl.

Advertisements

Your Chair is moved Mum.

Remember when our Nannan, your mum went into a home 26years ago? You said if I ever get like that put me in a home. I don’t want to be a burden. We have all said the same recently to our own kids, partners and friends too. But alas mum you’ve  forgotten that conversation, one that has been repeated many times over the years. Remember how  Nannan got a “bit funny“. So funny that she would walk across a busy main road to our house in pitch black with her purse tucked either in her bra or under her arm? She would hide her purse around her home and it would take ages for us to find it. She would forget the day and time and would get angry at you her main carer. Talk about history repeating itself. I recall how it broke my heart on my wedding day when she said “I don’t know who you are lass but you look beautiful and I wish you all the best”. That was the last time I saw her. I have felt guilt ever since that day not seeing her since we got married, I used to see her virtually every day. She was 90 a week after the wedding, I was in honeymoon mode and didn’t visit. But I used to call every day to check how she was.  Then she went into a nursing home a week after that, and you told me not to visit because it wasn’t Nannan. Then she died 2 weeks later. I thought that was tough. But you moving into a nursing home, now that’s tough.  Your room has been personalised, we’ve took some photographs and your chair. So there are familiar items there and we really hope you get some comfort from that. Your bungalow looks spacious and empty without your chair there and it makes it all the more real for Dad. His life’s companion, friend and lover no longer at his side. I know he’s not sleeping , he keeps waking up in the night listening out for you. The void is now physical as well as emotional.
I know you are upset that your six kids had let you down so badly.  Oh we know mum we feel it every second of every day. We know you need 24hour care, I’ve washed and bathed you and cooked and cleaned for you and tried to keep your spirits up. But its hard and we really couldn’t cope any more. Dad was exhausted, that’s replaced by emptiness. I was stressed, worried and yes exhausted too. I felt inadequate. No doubt the feelings you had a quarter of a century ago with Nannan.
So you are in your new home, you seem to have settled. Staff say you are keeping them on their toes and I so believe them! Dad went to see you yesterday and you were happy to see him and chatted and laughed. I came to see you over the weekend with our boy fresh from his trip to France. I must admit I wasn’t sure if he should see you. But your love for your family shone through the hurt and confusion. You talked to him gave him a cuddle and were so pleased to see him. You loved the cup he had brought you from his holiday and he liked it when you kept telling me off for interfering and always having to “shove my nose in and know it all”.
We stayed for around an hour and in the lift he turned to me and said  “God help me when you get like that mum”. In the car he asked a few questions between the snot and the tears I answered as best I could. Explaining that sometimes when we get older our brains revert back to being like children and that’s why there are mood swings and toilet accidents. But its still Nannan and your my mum deep down. And we will still visit and see you in the hope that those blue eyes shine again for us.
So its tough on all parts mum, its tough for you because you are confused, scared and no doubt lonely without your life’s companion by your side. Not forgetting the absence of  the constant stream of visits from us  and phonecalls “just checking”.  Its tough on us explaining to your youngest grandchild that Nannan doesn’t live with grandad anymore she has to live where nurses can look after her all the time, but no she’s not in heaven and yes we can still call it Nannan and Granddad’s house because that’s what it will always be even if Nannan and her chair are not there anymore.
Love you mum see you soon, and hopefully I’ll not get told off today when I visit.

image

This is the rose we dedicated to you and Nannan at the Botanical gardens.
If you like this post and my style of writing please feel free to follow and share on your favourite social media page.
Instagram

What a Day

What a mixed bag of a day.
Mum has moved into a nursing home that will be able to tend to her medical and emotional needs. We took her yesterday and at first she appeared to settle but later she was distressed and so she has been moved to a different room on a smaller unit where there isn’t as much noise and there are less residents wandering around. Hearing that she is distressed brings up a whole load of questions and I have been a bit wobbly to say the least today.
I was aiming to take Dad to visit today but they said it may be better to wait a day or two. So that is on hold.  I feel guilt for feeling relief at not visiting today. This is common for most relatives of those with dementia to feel guilt in various degrees. Guilt for not understanding, guilt for doing things that used to be done together, guilt for not wanting to do things, guilt for not being able to take care, guilt for feeling guilty and so forth.
We have taken Mums chair from home, along with photographs and ornaments. So Mum and Dads home looks a bit strange and will take some getting used to. I think it is hitting Dad now,  it all seems a bit real and yet surreal at the same time.

Our boy is on a school trip to Normandy for the week, in my wisdom a few weeks ago I thought it a good idea to let our girl sleep in his room for the week whilst I decorated a Frozen themed bedroom for her. Yesterday Mitch cleared the room out and did bits of filling. So this morning I had a blank canvas, woop de woop. You know those programmes such as sixty minute make over and the like. Well they LIE. It took me much longer than an hour to sand the walls, the door and the skirting, then you have to clean it and get rid of the dust, then and only then can you start with a paint brush.  Before I started the decorating I went for a quick coffee and breakfast with mitch, I must admit I didn’t brush my hair before we went out hell I can’t even remember if I brushed my teeth. He said I looked like crazy cat lady. However after I donned my decorating attire of old exercise pants and tatty vest both around a size and a half too small I resembled one of the guests on Jeremy Kyle.

Why when you are only decorating one miniscule room does every other room in the house become affected? Our boudoir has a mattress leaning against the wall, books, artwork and numerous bits and bobs that only a six year old can accumulate. Her big bro’s room previously a teen den, random socks, gaming paraphernalia and such are strewn on any flat surface including the floor.  It has been invaded, invaded by a cute, sparkly eclectic six year old.  Elsa and Anna have made their presence felt in that room although I am not so sure the smell is suitable for a Disney princess or two.

On with the decorating, but wait I’m an aspiring entrepreneur remember? Well I had almost forgotten so how was I going to incorporate the caviar into today. Rather than my usual decorating companions of Robbie, Bon Jovi and Take That I decided to listen to a TED talk on blogging and then a recording about facing your fears. I missed my sing-along but think Mitch appreciated the silence. Ceiling done, feature wall done. Other walls and gloss work I’m coming to get you. Part of the facing your fears included setting the intention of what you desire in life. A decorator. I desire a decorator when we live in our big beautiful house I want crazy colours, intricate designs and murals on the walls. Universe if you are listening I want a decorator.

Text comes through from our boy. Mum I’ve lost my wallet.  A text you want to receive when you son is in another country not. Call and text him back immediately, no response. I’ve got to pick our girl up from school and go to Dad’s. I  leave getting in contact with boy to Mitch. When I return home 90minutes later after  making Dad’s tea. (If you are not from Yorkshire read dinner for tea). No contact from our boy. So I take to social media, tweet and Face Book for anyone to get him to contact me. Text received found my wallet. Our boy then calls it had fell out of his bag and he had found it. I didn’t get the chance to give him the third degree when five boys in background dissolve into fits of laughter as one if his mates farts and it apparently stinks as much as the cheese factory they had visited this morning. The conversation was going nowhere presume they are enjoying themselves.

So panic over re wallet plus point at least he did not buy me any of said cheese thanks to missing wallet.

Two hours later another text pings in Mum I’ve lost my T-Shirt it got swept away with the tide and we couldn’t go into the water past our knees to get it.  I checked out the pictures on twitter and it was his new T-shirt that he was supposed to be wearing for the party night. Oh well that’s my boy. No one drowne10420405_10204997990808841_5076033849388247166_n (2)d and no money lost. Two days down three to go. I don’t think I want to see any more text whilst he is away.

This evening back into entrepreneur mode and I’ve devised a questionnaire for a package I would like to put together and I did  feature wall coat number two.
I’ve also cried for no apparent reason maybe it’s guilt, maybe its frustration. maybe I’m missing our boy, but either way better out than in as Shrek would say.

Now I need to sleep to sleep away the emotions and the dust of the day to be ready to do it all again tomorrow. hopefully without as many tears and with an absence of texts from our boy.

 

 

 

 

 

Sadness is Here

Berwick upon TweedIn the practice of mindfulness it is important to acknowledge the moment. To acknowledge the feelings the emotions and the take note of the present.

How long does this sadness last?
The text that flashed before my eyes.
No idea. I was on week 12.
Sadness.  Our mum the matriarch of the family, her generous nature, beautiful smile and keen sense of humour, physically still here but the eyes dimmed, her smile and humour are AWOL.  The sadness is here.  Dementia is present. We mourn our mum and a loving wife.  Her personality her humour, her love of cream cakes and the passion for her family. That part has gone, we still love her – love is unconditional. But we mourn as we try to get to know her new personality, her new ways and her new found vocabulary dropping the F bomb at an alarming rate. Shocking at first and funny, but not mums style, it is sad. Sadness is here.

Chaos was all around, preparing for a short break with the kids. The kids were excited as they headed to the car. Mitch was loading the car with dogs, snacks and excitement.  I was sweeping the floors. (I like to come home to a clean house)

It hit me. The Sadness was here.

Like a bolt out of the blue, there I was sweeping the floor and realised that Mum hadn’t called to say “have a nice time, don’t forget to ring when you get there”. I shouldn’t have expected the call as mum had forgotten how to use the phone over the last couple of weeks or so and her calls to me had ceased.  In all honesty the calls had dwindled over the past 5 months.

I don’t know why it hit me so brutally that day, probably because deep down in my let’s pretend none of this is happening mode I knew when we returned in a week’s time we had “that” meeting with the social worker, to discuss a care and support package for mum.

So the holiday came and went. It was blustery, it was wet and it was also sunny. The scenery was breath-taking evidence above, the funs stars were fun and we had a nice time, a nice time with sadness loitering always loitering.

The meeting day arrived and the social worker was wonderful, she was so kind to Mum and Dad, so understanding as our tears flowed. She was fast acting when Dad the stalwart of the family, broke down and admitted he couldn’t take anymore. Sadness and desperation was there. It is more than sad seeing your Dad a husband of 65 years collapsed unable to speak and take any more, physically and emotionally exhausted. We had tried we had slept over on several occasions to give Dad a break. I had been there virtually every day to take some of the load off for Dad and help out. We had lots of laughs we had trying times and we had emotional times. But now it was just too much. Too much to deal with, too much stress, too much heartache and too much sadness.

That day was tough, actually a breeze compared to this now this was devastating. We had to escort mum to emergency respite care to give Dad a break.  Mum hasn’t cried since her younger sister had died five years earlier. But now she cried, she wailed and showed us her sadness.

It should have been for just one week or maybe two. However it soon became apparent it was just too much for an octogenarian who had been dealing with much more than he had shared. The realisation was that she could no longer be cared for at home, night carers were not on offer or an option.

Dad was ill for the first week, exhaustion, relief and sadness.  Week two came and went.

It is now week 10. Sadness is still here, the mourning is present and we are still awaiting that room in the nursing home. Desperation is back.

If you have any comments let me know, feel free to share my blog, and if you want to join in the sandwiches to caviar journey please follow me and come back again soon. Thank you

Bedtime Relaxation

sleeping I posted on my Facebook page today. How do you make a million pounds? Answer £1.00 at a time.

So where so I get those £’ss from?

Answer I don’t know yet but what I do know is it will be from helping others.

One area I am passionate about it helping kids to chill out relax and take some time out.

Our kids are 12 & 6 and our eldest had night terrors on a regular basis, I have always had an interest in stress management, relaxation and think it is very important to switch off at night.

Our boy would go an hour and a half later he would start yelling and screaming pacing the rooms, absolutely terrified with horror in his still sleeping eyes.  Guiding him back to bed and trying to soothe him back into a restful state would prove exhausting and very tiring.

I got into the habit of when taking my boy to bed doing a gentle relaxation technique to help him calm down, relax the body and sleep for the full night (fingers crossed) It didn’t cure his night terrors outright but it did drastically cut down on the frequency.  If I was not able to do the bedtime relaxations the night terrors would return.  Thank fully they are no longer a problem he is almost teen – but he still asks for a relaxation sometimes.

However our girl is a different kettle of fish.  She has the occasional night mare but her night time problem is more of a switching off and calming down. She has a very active imagination and can worry about anything and everything.  As soon as she pulls the covers, she will recall things that have worried her about her day, a disagreement with friends, a telling off from mummy or daddy, her brother being mean (shock horror) and any number of things that your average Y1 has going on in their mind.  The relaxations I do for her are all about being calm, protected and feeling confident.

My aim is to produce a book of bedtime relaxations for kids that parents can read to their children, and also recorded relaxations that can be downloaded and left playing in the bedroom whilst the child goes off to sleep. I have written a 30 day programme for family communications and the bedtime relaxation is a big part of it.

So here is a sample of our girls current favourite relaxation.  It is based loosely on the chakra energy system but I use the colours of the rainbow as I feel this is what our girl can relate to I use words that my daughter will understand and is comfortable with.  She is mad on all things girly so I chose to use sparkles and flowers but adjust accordingly to words that your child will relate to.

Feel free to use and pass onto anyone whom you think may be interested. Also feedback your thoughts of course if you think I have a book in there or something else that I may not have thought of. Are you lying comfortably?… Then I shall begin.

 

Close your eyes and relax

Breathe in Red sparkles and Breathe out Red flowers   (Repeat 3 times)

As you breathe out the red flower imagine that each petal of the flower is helping you to feel relaxed and happy. Each petal helps you realise that it is really good to be you and you like who you are.

Breathe in Orange sparkles and Breathe out Orange Flowers (Repeat 3 times)

As you breathe out the orange flower imagine that you can see the biggest orange flower that you have ever seen and each petal of the flower belongs to each of your friends.

Breathe in Yellow Sparkles and Breathe out Yellow Flowers (Repeat 3 times)

As you breathe out the yellow flower you can imagine that flower right in the centre of your tummy, The flower is big and bright just like your smile and it makes you feel happy and secure. You know that if you ever feel sad, upset or worried about something you can put your hand on your tummy and think about that big flower that helps to feel happy and secure.

Breathe in Pink sparkles and Breathe out Pink Flowers (Repeat 3 times)

As you breathe out the pink flower image that there is a large pink flower just where your heart is. This helps you to think of all the people, places and animals that you love. The flower is so large and it holds all the love in the world. You can send love to people who you love just by thinking about them and holding your hand on your heart.

Breathe in Blue Sparkles and Breathe out Blue flowers (Repeat 3 times)

As you breathe out the blue flowers imagine that each flower is a kind word that is said about you, and you can hear all the kind words that people say about you. You can also use each flower that you think about for helping you to choose kind and caring words.

Breathe in Purple Sparkles and Breathe out Purple flowers (Repeat 3 times)

As you breathe out the purple flowers imagine that the purple flower is there to give you wonderful dreams. Helping you to relax and sleep soundly tonight.  The flower is soft and delicate and will ensure you have wonderful dreams tonight.

Breathe in Diamond Sparkles and Breathe out Diamond Petals. (Repeat 3 times)

As you breathe out the diamond petals, imagine that they are falling like raindrops bright, shiny, wonderful warm raindrops falling all over your body. The petals are landing on your body and they fall together like a coat of armour, this is a magical coat of armour and offers protection from feeling sad and worried It helps your dreams be happy bright and shiny. You know that the magical diamond petals are there to help you feel, relaxed, happy, bright and shiny.

And now it’s time to go to sleep to relax and enjoy your sweet dreams.  

 

For more information about the 28 day family relaxation package available either as a download or as a workbook take a look.