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