IN NEED OF A SIMPLE

CHRISTMAS

 

Hello again, it's nearly Christmas & I did promise to write a final 2014 blog post. So here goes!

 JANUARY

I decided it was time for me to reach outwards & join some local Charities that support families who have children with disabilites. I was nervous about making that initial contact as I am not very good at asking for help. But I knew it was vital, after a very long time battling on my own. I also signed up for a course called, "Living with Autism". I met with other parents, who had autistic children every week. I was always very nervous about attending, but again knew it was the right thing to do for myself & my family. I did find meeting other people who had similar problems a relief & I myself started to develop my own small voice about telling our story & our eldest daughters late diagnosis of Aspergers at age 14 in October 2013.

Looking back the most valuable piece of information I took away with me was something one of the course leaders said, which at the time really angered me! She said that you will never beable to get people to understand autism, so you must provide the life long learning of all the life skills needed for the autistic person to cope & live as comfortably as possible. This took some time for me to figure out. But maybe finding out the hard way through some relationship difficulties with friends & family I now know exactly what she was saying to be 100% true. It has been a very tough realisation for me, but I have accepted that & find that has helped me & my expectations are now more realistic. 

 FEBRUARY

 I attended my first National Autistic Society local branch coffee morning, with a lovely lady I had met on the course. I would not have attended on my own. We clung to each other, like new school friends. Something I will never forget happened at that meeting. There must have been over 20 people in the room all ready to listen to others. I remember hearing my own voice speaking aloud in front of them all! I talked non-stop for a good 15 minutes about our painful, frustrating & exhausting journey, which had lead me to the meeting. They all listened & afterwards thanked me for sharing with such honesty & love! Driving home I felt quite light headed & almost in shock at hearing my self speak with such passion?! That lasted about an hour, by which time I was telling myself how ridiculous I must of come across?! What a big mouth, know it all?! This happens after a burst of confidence in a social setting. I always re-think &  begin to beat myself up mentally about whatever I have said or the way in which I may of come across etc. Unfortunately I have not felt comfortable about attending again. 

MAY

May started & I was in pain...huge pain. Suffering with Osteoarthritus in my right foot & hand joints I am no stranger to pain. But this pain struck my face & jaw on the left hand side. It kept me awake during the night for over an hour in horrendous pain. Also after eating hot or cold food could bring on an attack. I would sit almost in tears holding a warm gel pack across my cheek to help soothe the relentless spiking pain! After a week I visited my doctor who gave me some muscle relaxants for my face & told me to visit my dentist. All clear at the dentist, so he decided to refer me to the hospital for a check up. The tablets helped to take off some of the pain so that it was a little more bearable. 

At this time my first free councelling session was to begin for the next 10 weeks, provided by a charity that I had joined back in January. I went into the session in acute emotional & physical pain, the side of my face & half of my nose numb & tingling with throbbing pain. I mentioned this to my new councellor. We began to talk. After 1 hour I stood up to leave & say goodbye, when I became aware that all my pain had stopped?!! Mind & body are so connected! How unbelievable?! I can thankfully say now in December the pain has gone away. Sometimes when I am going into an important meeting about one of my daughters I can feel the slightest twinge in my left jaw, but I tell myself to relax my jaw & face. It helps? The sessions were difficult, but so good. This wonderful counsellor allowed me to see & celebrate my strengths. She encouraged me to feel good about them. She was also very complimentary about my personality & the way I think & portray life stories. We talked about my very high expectations & constant habit of second guessing what others may be thinking & how exhausting that must be? We discussed my colourful, yet painful childhood & maybe the things I did not receive as a young person may affect me with my relationships with myself & my family today? I worked on forgiveness lots which helped me to let go of many upsetting parts of my younger life & many other things in my late 30's & late 40's. The 10 weeks were so good for me & I am trying to change some unhealthy patterns of thinking & am now a much stronger person as a result this. I am so proud I was brave enough to ask for help, to ultimately keep my family together & myself from falling into another black hole!  

JULY

The connection with my youngest daughter's Primary School was coming to an end, as she was leaving Year 6. It was also me & my husband's 14th Wedding Anniversary & our much anticipated 10 night holiday abroad! A month of celebration, farewells & new experiences. I felt I really needed to listen to self-care for myself & threw myself into trying to really feel worthy of the good things in my life! Treating myself from time to time. I decided to go clothes shopping on my own, (which I very rarely do), & bought lots of pretty, soft femine clothes for our holiday. It felt good, but also frightening at the same time. I did ring home after about 3 hours as I felt panic coming on about being away from everyone for so long. When I returned home with lots of bags both girls loved seeing me smiling & being pleased with myself. They really enjoyed me showing them all my purchases. So did my husband, as he was aware just what a massive thing it had been for me to do that day, something just for me! 

SEPTEMBER

Excitment as my youngest daughter was to start her new Secondary School & my eldest daughter was to return to her half day Medical Needs School, for her final year & GCSE's

Since then my youngest daughter has only managed to attend 2 days due to the sudden onset of severe anxiety, panic attacks & many other debilitating symptoms. Nausea, dizziness, unability to socialise or feel relaxed with old & new friends, a lack of concentration, difficulty in understanding verbal instruction that is delivered quickly, difficulty in finding her way around the school. Poor memory, disturbed vision & hearing difficulties. Finding beginning school work impossible without the  help of a kind, soft spoken adult who also has a good sence of humour. Finding it hard to sit still in a classroom setting or wait for anything, ie Christmas, friends arriving on time or travelling on a longer than half an hour journey. A fear of lifts & even the word "SCHOOL" brings on a panic attack. A desire to run off her energy to feel more relaxed in her own body. Diffculty sleeping without vivid & upsetting nightmares.

This has been an incredibly very hard 4 months for us all. I have worked relentlessly & have had to be constantly brave in many meetings with her GP, School SENCO, Head of Year, Welfare Officers, CAMHS & the hospital's specialist autism team to explain how she is feeling. 

This time around with my greater knowledge & experience in dealing with professionals, I have been heard sooner!! The process of helping my youngest daughter return to a school is ongoing. She has already seen a number of professionals who & we are now awaiting further appointments. A low dose medication has been perscribed to help soften her extreme anxiety. It is helping a little. In the meantime she is at home with me away from a world of her friends & peers. It saddens her greatly. She is struggling to make sense of it all, but thankfully we are the greatest of friends & we talk openly about her worries to help keep her from falling too low from my reach.

NOVEMBER

My eldest daughter has also been off her school since the 10th November, after total body exhaustion, (chronic fatigue) following an increase in her school week timetable & a more intense programme of lessons to attend. She has become stuck. This can happen frequently with Aspergers. She finds it very hard to switch on & manage things most neurotypical people would find they are able to contend with. She just switches off mentally. It becomes impossible to motivate her.  She will then withdraw with depression & pain, especially in her legs, or she may have a meltdown. This can last for over an hour & is a very distressing for all of us. Extremes of emotion can trigger a meltdown, ie a sudden unexpected gift or suprise event or fear & anxiety. She can become very aggressive & often needs to talk about Disney by showing you her collections of books or pins. She can be very distressed with massive shifts of emotion from elated to distrought within minutes. The need to say random words is part of her self stimming to calm. I often have to repeat back the words so she can hear them. Her accents are constantly changing with her voice swinging from American to a real London Cockney in the space of one sentence. When the meltdown is over she remembers very little. She is exhausted & feels like she has completed a marathon. She is always so sorry & tells us all so many times. We have learned to support her throughout these difficult times with attention, love & respect & always with a keen awareness of safety for us all.

Her school have not been in contact in 5 weeks?! No one has phoned me, been to see her or anything? I have emailed them to keep them informed. Finally 3 years later a referral has been made for her to attend the specialist Autisic Department based at the hospital, by a new doctor at CAMHS she met for the first time last week at my request. Her younger sister has also been referred there after only just 4 months!! I am ever hopeful they may help both my girls to progress & continue with their young lives with more confidence & ease?

  

WHAT HAVE I LEARNED?

This year has been a year of many new things. Some good, some suprising, some shocking, some dreadfully upsetting & some just frustrating. I said to my older sister the other day life is messy & we have both been aware of that from a very early age, with our dads total deafness to accept, our mums succession of dreadful illnesses to witness, their difficult relationship to watch leading to an eventual divorce. Their further marriages, my dad twice after my mum & my mum once after my dad.

 My mum died from breast cancer age 46 in 1986 after a 5 year remission, when I was just 19 years old. She was divorced from my dad by then. She had met & married a younger man who turned out to have a serious drinking problem. They divorced after a very traumatic short marriage, which resulted in me leaving home for a short time to live with my mum's sister at the age of 15. In remission from cancer, she finally met her true soul mate about a year before the cancer returned & she passed away. They lived together & he was with her up until she lost her courageous battle. I lost contact with him many years ago. My dad remarried a lady 10 years older than him from the deaf community, but tragically she also sadly passed away from ovarian cancer after only a few years of happy marriage. He then married again another lady from the deaf community & they lived many happy years together until his sad passing 3 years ago, after being diagnosed with stage 4 gullet cancer 18 months previously. 

In this life you have to expect the unexpected. Life is hard & a struggle. If you think life is going to be easy then you have a lot of learning to do. Throughout this year I have finally made peace with my difficult but very loving past. Having so many responsibilities as a mother to my own children who are both struggling with daily life, I have needed all my focus to be concentrated on the living & now. It has actually forced me to almost put my past to one side & close the lid. My mind, body & spirit can only handle so much & I have had to grow & be an advocate for my children. To put them first. But also I know that I also have to be mindful of myself & my needs. This is hard for me. It is not a natural thing for me to roll with. I do put up alot of resistance to self-care, but I am slowly learning & allowing me to matter. It is about being seen for me, being visible & having a voice, even if it is very small at times. My step mum abruptly stopped any contact with me & my family last Christmas. 

I can become very overwhelmed by the pressure to have a "HAPPY LIFE" everyday. Our days are gentle ones with respect for each others different needs & environments. I am caring for my daughters special needs. It is about micro- management & routines & repetition. It can be lonely in that we live in our own world of prediction & time limits. Our eldest daughter finds socialising very stressful & can feel overwhelmed after 2 hours & the need for some space becomes pressing! I have a different perspective on happieness now celebrating life's simple joy's, continued learning about autism & then sharing that with others, soul nourishing moments for us all, honesty & sometimes saying we feel sad & in need of familiar home comforts. I guess in a way that is has become our kind of happy? To outsiders it may seem an odd & dull way to live? But that is how it is for now & it has to be ok & we do have lots of fun & laughs along the way. A different kind of happy in a our world of accepting difference with open hearts, minds & an endless supply of unconditional love!

 ASPERGERS & ME

The more I read about Aspergers to understand about my beautiful daughters, I have to say there are many similarities about myself & some of the diagnostic signs etc. I have always had difficulty socialising in a group of people. I have found this to be more than just shyness & it has held me back many times from many work & social opportunities. I am still trying to come to terms with the possibilty I may have Aspergers & how this may of influenced my choices/decisions etc. Why I do not have so many close friendships & find belonging to groups totally terrifying?!! Public speaking is impossible, unless I am speaking about autism? I have also found it very comfortable to communicate using blogging rather than talking, as I find I get side tracked in speech or quite often my mind goes blank. I also think very much in coloured images & have a great eye for detail. I also find it very hard to speak up for myself, but always jump straight in to help anyone where I feel they are being unfairly treated. Processing speech & if someone is rude to me it can often takes a few days for me to beable to respond. Sitting here now I can probably list many more things which may match up to a diagnosis of Aspergers for me? I may leave that to a separate blog which looks into this in more detail in the future? For now I am working things through slowly & trying to be as gentle on myself a possible. I may ask for a diagnosis in the future? My mornings & night times are my worst times for self doubt & overthinking to creep in, but I know this time will pass & so am trusting all will be well soon.

MERRY CHRISTMAS & A GOOD NEW YEAR

This year I am hoping for simple, peaceful & loving family Christmas & a New Year that brings renewed strength & better provision to help our precious girls find something of a more solid foundation underneath their feet.

Thank you so much for reading my blogs & offering positive comments & also sharing some of my posts.

I will be back blogging nextyear as our family journey continues to unfold.

 Keep warm & keep well.

xx

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MY JOURNAL

  My developing interest in writing as a form of self expression has been such a successful medium for me, since January 2013 when I began blogging. I was lost, lonely & frightened but mostly numb & my soul was empty of any hope. I was battling depression as a wife & mother.

Whenever my thoughts became too much for my mind to handle, I took to writing them in my first journal. I have always had a real love of pretty things, but sadly had  difficulty in feeling worthy of them. As part of my new healing journey & beginning to look at myself with more compassion, (as I would a friend), I ordered this special little journal, just for me!

 I slowly began to fill in the blank pages with many inspirational quotes, creative design ideas for my collage artwork, poems, my thoughts & important contact numbers & addresses & names of people I have discovered along the way. It was also a documented record of our fifteen year old daughter's eventual diagnosis of Aspergers in October 2013.

MAGIC MOMENTS

I have also used it to write down some priceless short conversations between myself & my daughter's which I read when I am in need of some comfort or reassurance that I am doing the best I can?! I would like to share one with you all. 

Whist looking outside our kitchen window onto our garden with my daughter one morning I said, "Oh Zoe what a wonderful joy it is to beable to look at Daddy's beautiful garden, I never even pulled a leaf!" Zoe looked right at me and replied," Yes Mum but you do alot inside!"

 ~How wonderful!~

It will be 2 years this January 2015 & 74 blog posts later that this journal has become my best friend. It is with some difficultly that I flick back through these pages which honestly bares my often raw thoughts & emotions.

  Some of my personal reminders written for me, by me.

SOUL BANK
REMEMBER TO PUT BACK IN WHAT'S BEEN TAKEN OUT
INVEST IN YOUSELF


 GIVE YOUR HEART A CUDDLE
IT FILLS YOUR SOUL


SIMPLE PLEASURES
BE GRATEFUL


BE YOUR OWN BEST FRIEND
SELF NURTURE IS NEEDED
SEE YOURSELF

GIVE LOVE : RECEIVE LOVE

BE KIND : ACCEPT KINDNESS

BE CREATIVE : FIND YOUR LIGHT 

MAKE PEACE : FEEL CALMER

SELF NURTURE : FIND YOURSELF

OPEN YOUR EYES : BE SEEN

 Since becoming more accepting of myself & making peace with my troubled but very loving past, I have been able to focus on my future & my families too with my new found voice & a peace in my heart.

I will be forever grateful for this at times very painful, but massively invaluable learning experience.

If you are ever feeling overwhelmed by your emotions or  worries & they are weighing you down, writing in your very own special journal may help you too? I do hope so?

Thank you for reading my blog post today.

For my next post I hope to publish my end of  year review for 2014.

Until then keep warm & take care.

xx

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A SLOW START

Good morning from a very delicate mum needing to express all thats inside through this blog post. My aim is to help clear away & find a place for all the millions of painful thoughts stamping around in my very sore head today.

It has been a very unusally slow start, as my body was really struggling to raise itself into a vertical position on waking. I am very lucky in that I am a stay at home mum & so just for today I am doing the bare minimum. I take my hat off to all those others who do have to go to work or look after other family members away from home. You do a truely amazing job, if that is you?!! My husband is thankfully managing to work throughout all our family concerns. Later he will return to a very exhausted & burnt out wife, it's hard on us all. We work as a team, like most marriages. We rarely go out alone & if we do it feels really strange? He is doing so well & works so hard for his family, I am so grateful.

 

The last two weeks have been a struggle as both my daughters have been off from school. The eldest with a total mind & body shutdown, brought on by stress & pushing herself through a huge school week with extra studies etc. Having Aspergers means she has to pace herself & really build in big chunks of relaxation  to pursue her obsessions/hobbies to destress & re-energise herself. This is a crazy balance, as real life does not work that that!! So often after a full on week of pushing to the limit a week of chronic fatigue begins.

My youngest is still not able to attend school & is feeling increasingly more away from the real world. It is heartbreaking at times. She is starting to become very attached to our home & often worries about bumping into friends if we pop out in the day for fear of feeling stupid, different, misunderstood or just weird if spotted by them?

Aspergers can make it hard to socialise with your own peer group, often perfering older company if any? Neither of my girls are socialising with friends. Friendships on the internet & via penpalling around the world with like minded, "Disney" friends helps my eldest daughter to feel connection with the outside world. 

We spend time indoors all three of us together everyday in our, "own worlds" of our particular interests. Infact we exist around each other perfectly which is something I treasure deeply. 

This week has been a tough one as I have attended two different meetings, at two different schools, over two consecutive days with an army of professionals discussing serious matters & decisions to be made surrounding both their educational futures.

Today I am exhausted. My mind mashed with words & feelings left over from just one of the meetings. It was not a good meeting & I felt so patronised that I told them so!! I am learning to stand up for myself, but it takes it's toll on me.

I also felt worried about how I uncomfortable I felt just with other people myself. Having spent so many weeks being so isolated & in a bubble at home, the outside world is busy & fast & noisy & messy. I had to really focus on feeling a tiny part of it. 

Today I am still in my dressing gown, walking slowly, eating slowly & drinking lots of tea. Sat & watched TV with my girls, cuddled Fig our guinea pig which made a tear appear, from my right eye only? This one tear felt good. It was me allowing these feelings of hurt today &  to look for comfort around me. 

I have joined two new local charities who help & support people with disabilites. I have joined my first facebook group for families living with autism & introduced myself & my family via this blog too. I have emailed the National Autistic Society with a link to my blog. I am reaching out slowly.

Today is about my self-care. Everything that can wait is waiting & I am just about ok with that. 

I wish anyone else reading my blog today who is also feeling in desperate need for self-care today peace & rest & comfort.

Thank you for reading.

My mind is less busy & my body is not as heavy for expressing my many thoughts through my need to blog & hear my own story to understand it better myself.

   

Until next time, take care & remember to think about yourself as well as everybody else whenever you get a window of opportunity.

xx 

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INVISIBLE WINGS

OUR SPECIAL BOYS

Hello again, this blog post is to celebrate how lucky we are to have these two adorable guinea pigs, Fig & Oreo in our lives.

Zoe had been to a "County Show" with a friend & her parents in the summer school holidays August 2013. They had lots of tiny guinea pigs to buy there & she came home after a long day frantic with the need to go the next day & buy two of them. 

It was impossible to do that, as firstly we already had plans & secondly having never had a family pet we needed time to think about the prospect & the responsibility of looking after a pet etc.

I really felt Zoe's need for something of her own. Something to love & look after. Something she felt would need her as much as she needed it!! I decided I would go with my gut & really make this happen for her. Somehow I even managed to talk my husband round into agreeing?!! Gina our eldest had never been keen on animals, infact she had a severe dog phobia from very small, which became so bad we couldn't visit to parks, any open spaces or friends houses who had dogs. Also my mother-in-law has a severe phobia towards animals since childhood. But I felt guinea pigs would make the perfect family pet, taking into account all our different needs.

FIG & OREO'S NEW HOME 

I managed to locate two 6 month old boys half an hour from where we live, who were no longer wanted by their owners.

Zoe fetched them both home & they were her very special gift on her 11th birthday.

INVISIBLE WINGS

These two boys have been held, cuddled & loved dearly everyday by all of us. Suprisingly Gina has a truely amazing bond with Fig & she says seeing him every morning is what she gets out of bed for!! Zoe enjoys cleaning them & is very keen to make sure they are looked after well with the right food & care etc. Gina is more concerned with talking to them in her own guinea pig way of speaking. She has special names for them, including imaginary names for their possible girlfriends, Olive & Vanilla Sponge?!!

We did discover, (once Fig & Oreo were part of our family) that guinea pigs are often used in schools with autistic children. 

How strange that Zoe had been so attracted to these gentle creatures. I knew it was a real request from somewhere deep inside her, which I was happy to listen to & make it happen for her.

I think these two special boys have, "invisible wings" as without them this last year would have been even tougher than it has been already & unfortunately still is!!

I would recommend them as an adorable pet for anyone young or old who find they are searching for loving & trusting friendship and are finding that almost impossibe to achieve with people. They have both introduced another joy into our family home.

My husband, mother-in-law have both come round, as they can see just what a hugely important aspect of our daughter's life they are. 

This week both my girls have struggled with very different things.
I will always be eternally grateful to these little furry angels, as they offer us momentary distraction & much needed respite throughout some of long days & family evenings together.

THANK YOU FIG & OREO

 Many thanks for reading my blog post today.

Until next time, take care.

 xx

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TRUST
HOPE
BELIEVE

Hi my name is Zoe, this is me starting my first piece of artwork. My mum let me use her very own art shirt, which I was very proud to wear.

I felt like doing this art because I was feeling a bit anxious and not feeling myself. Also I was in need of a bit of company. But as you can see, I started to feel a little bit brighter and calmer once I began.

This is me getting stuck into my card collage. Feeling a lot more relaxed then when I started.

Enjoying using the paints, papers, sponges and stamps. Loving my mucky hands!

My finished card which I am so proud of!

A big thumbs up from me to any other people out there who are struggling just like me at the moment. The words on the card 'trust' 'hope' 'believe' I chose because things will eventually turn around!

I was really suprised with the end result, so seriously anyone can have a go and believe me it will brighten up your day, because it sure did mine!

Thank you for reading my guest blog today.
Thanks for the opportunity Mum.

Until next time, take care.
xx

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"I LOVE CORNWALL"

 Hello again, this blog post tells of our much needed 5 night break away at my beloved Cornwall, staying on a farm just outside Looe. This was a new experience for us!! We were so excited to meet all the sheep, goats, ducks, chickens & rabbits. 

The past 6 weeks have been very hard on us all, with our youngest daughter age 12, struggling with anxiety & panic attacks when starting her new school. Socialising with her friends, old & new became impossible for her to cope with almost overnight. She has only been able to attend for 3 days since September.

 Our eldest daughter age 15 was diagnosed with Asperger's, High Functioning Autism in October 2013. Her younger sister is now showing the onset of very similar difficulities. This has been a huge shock for not only herself but for us as parents, family members & friends. The sudden change of environment & a huge new building, new faces, new teachers became totally overwhelming for her to cope with after her first day. I had picked up on a change in her personality & body language about 2 weeks prior to her starting school. She was already stressed & feeling overwhelmed which leaves her feeling sick all the time. It then becomes impossible for her function like she would normally do with daily life. At home within her comfort zone of things she loves & having very limited time socialising, she is well in her body. The sensory overload that life beyond our front door creates is kept to a minimum & she is able to cope in this protected world.


I have worked so hard with her school, the welfare officer,  our doctor, the hospital & with friends & family.

Thankfully all my relentless hardwork has paid off & she has already been seen at the hospital & referred to the Autisic Spectrum Disorder Clinic in early December for futher assessment & a possible diagnosis? We also have a meeting with the various professionals involved to discuss how to move things on further, as she is still unable to attend school.

Our eldest daughter has attended morning school since Year 9. Usually by the end of the term she is so exhausted her body crashes with chronic fatigue syndrome symptoms & she has to rest & be around her home comforts & obessions, (Disney being just one of them!!) Running up to our break away, she was off her school for a week with exhaustion. I had both my daughters at home with me. She has many mood swings which at times produced distressing meltdowns for hours at a time. She does not remember anything during the meltdown. I  am learning to ride the emotional waves of such a meltdown & trust it will eventually pass. So is my husband & her sister as they help all the time when the sensory meltdowns begin & end. I am exhausted at the end of it too, as she returns back to us all, fragile, sore, drained. She slowly settles & begins to be part of our family life again.

We all needed some family respite so badly. 

We arrived in thick fog after a long journey.
This lasted for 3 full days!!!!

 

We faced some challenges including the weather, our eldest daughter's emotional meltdown, plus my poor sleeping!!

Thankfully we managed to live through those difficulties & found many wonderful things to concentrate on. Like feeding the animals, collecting fresh eggs & eating them for breakfast. A real burning fire & wearing wellies!! Watching some great DVD's together, with the rain lashing on the windows. Not quite knowing how the days were going to turn out, but enjoying having time & plenty of space to have some fun.

I watched my two girls with tears in my eyes from the kitchen table, as they confidently went to feed their new adorable sheep friends. I heard my youngest say,"bye see you in a bit" as she went to play pool, darts & ping pong in the games room just across the yard. It was the first time my youngest had looked like herself for over 6 weeks. What a moment to cherish & smile to myself about. I wish with all my heart to hear her say that again, one day soon.

Until next time, take care & keep warm.

Thank you for reading my blog post today.
xx

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