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IT'S BEEN A LONG TIME HELLO AGAIN






IT'S BEEN A LONG TIME

HELLO AGAIN


My first blog post in many months. I keep putting it off as most of the time my head is too full of allsorts of information flooding through it & I find it hard to focus on one thought, feeling, emotion at a time.
I guess you could say I am living in a state of constant overwhelm?

Looking back at my last blog posts, they were written at a time of huge concern for both my autistic daughter's & their wellbeing, education & mental health.

Since January 2016 my main goal was to fight for them both to be given their individual EHCplans (Educational Health Care Plan) by our Special Educational Needs Council Department.

It was a full-time job, endless form filling, constant phoning, constant pushing/chasing, relentless emailing, each day &  attending many frustrating meetings with professionals involved with both my daughter's cases.

I managed to get decisions reconsidered & overturned after finding the strength & courage to not give up the fight for both my daughter's education.

I was utterly drained & exhausted. My whole day was on constant warrior mum mode, never taking my foot off the gas once. My determination & drive was heaven sent. I was going to have to win whatever it took!!

I remember one desperate time when I even considered sitting in reception of the council not moving at all until they agreed to change their decisions about my girls. Thankfully it didn't get to that!! But you know I was so needing to be heard & my daughter's individual needs recognised, I would of carried such a crazy thing through!! Bring in the local papers, get on the local news, whatever it was going to take to allow my girls to have their EHCplans granted to them.

Finally after 20 weeks of constant battle both girls were given their EHCplans. It was our family moment to celebrate after the greatest battle of my life, in our own quiet way with a meal in a familiar restaurant. Finally after 6 years our eldest daughter had finally been recognised as needing support within a specialist autism school provison. After 2 years our youngest daughter was finally recognised as needing support within a specialist autism school provison.

The whole process quiet frankly nearly killed me. I had no energy or time for anyone or anything else. As a result I have become very isolated with regard to seeing or keeping friends. It has been a very lonely road, which I have had to walk on my own. online friendships have been invaluable & a great support which I am truely grateful for. It was my only priority to help my precious girls as much as I possibly could.

After a nerve racking long summer of waiting for the results by our council SEN department they were both awarded funding to attend the school of their choice & ours too. An independent specialist autism provision school, 13 miles away from where we live. Within our borough there are shockingly no other schools that can provide the support & environment for my girls. 

They both started in October 2016 & so far it has been a different journey for both of them. 

Our youngest has settled really well after an anxious start, we are so proud & happy for her to see her making friends & enjoying going to school each day.

Our eldest is finding it very hard to settle at all. We are hoping that with a slower but consistant approach by the school & myself she will eventually find her confidence & belonging at this amazing school. 

It's been a long, exhausting & nerve racking 12 months, but so grateful to be on the other side of the fight with the local authority for now. 

Thank you for staying with us & our story.

It has felt good to blog again, after so long!

Writing helps me to process our difficult days & celebrate our good days.

Until next time, take care xx   
 

  
   


AUTISM

HOLIDAY, HEALTH & HAPPY MEMORIES


Hello again, it has been some weeks since I have had the time or the energy to write a blog post. But after a better day today & a free slot in the house with everyone entertained & calm I felt it would be an suitable time for me to have a few minutes sharing some of our latest journey living with autism.

Our holiday went well, but there were a few things that we weren't expecting to happen. Firstly Stanstead Airport was a disaster with an hour long queue to check in the suitcases.  Also the checking hand backage queue was again about an hour, so we mentioned to the staff our girls were becoming very aggitated & could they possibly help us out? Thankfully we were shown to the disabled queue, which helped so much. Our youngest daughter felt the 4 hour flight was way too much to cope with & became very agitated & uneasy about sitting so still for so long. This means we are better off in the future just going to Spain as only 2 & a half hours. The weather on arrival wasn't as hot as we had anticipated & for the first 4 days it was mainly cloudy with strong cool winds. When the winds calmed & the skies turned to blue the heat from the sun was wonderful & we felt relaxed & so grateful to be soaking up the hot temperatures.

Eating out was suprisingly really good, as our eldest daughter has lots of sensory overload reactions when she is sitting in crowed, brightly lit, with noisy music & chatter, smaller places here in the UK. But we were sitting in daylight, looking out towards the beautiful sea, with lots of space & not many other people or children. She was very relaxed & ate well. It was really lovely for us all. One night which was a Sunday the locals were out enjoying a meal, plus the school holidays had begun & there were more children & waiting for food etc. This became a huge problem for her & she was very quickly overloaded & needed to leave quickly with me.

Also as it was not as hot as we expected issues arose when she was in transition from the heated pool to getting dried by the side of the pool. Sadly she experienced about 3 meltdowns in the pool, which was really frightening as both myself & my husband struggled to keep her calm & also assist her out of the pool when she was able to. 

The villa had Wifi & so she prefered to stay inside by the breeze of the double doors doing all the usual things she fills her days with everyday her. Sunbathing is not her thing. People asked me if we had a good time on returning & I said you just have to accept & work with the fact that autism does not go away just because you are on holiday, so whilst it is lovely to see different things & places our time & attention is always focused on both our girls & their special needs. 

Sleep worked so well & we had no problems, both girls slept lovely in there spacious bedroom. 

My health however has not been good of late & I went away with a facial issue & very sensitive teeth! After an emergency appointment to my dentist & xrays, given the all clear it unfortunately continued on the holiday. It wasn't pleasant, but I noticed the more I relaxed the better the pain began to ease a little. My jaw, ears, nose, all my teeth & under my left eye had accute pain & numbness.

To cut a long story short last week I suddendly began having a massive painful attack on the left side of my face, which by the Wednesday evening at 7pm I was in an ambulance being taken to our local A&E deptartment. After waiting for 4 hours & given several strong painkillers to take to take away the pain I finally arrived back home at midnight. It seems to be a condition called Trigeminal Neuralgia? It is so painful & can return & flare up anytime. For me I think stress has a great influence in my attacks? I have been perscribed drugs for treating Epilepsy to control the nerves in my face & jaw from hurting me so much. I am having to stop them soon as they are a very strong medication. I experienced the same about a year ago so I am hoping this time it stays away for a long, long time?

Also as a result of many other things I am sorry to say my depression has returned & I feel like I did when I started my blog a good few years ago. This was to help me heal by expressing my emotions through writing & collage art therapy sharing with others my journey back to better mental & phyiscal health.

Lots of things have been happening over the last 4 years, in particular concerning our teenage daughters health, both finally being diagnosed with Autistic Spectrum Disorder & other medical conditions.

 Our eldest daughter has been too unstable to attend her part-time medical needs school since October 2014. She has been having a very difficult time with frequent intense hour long meltdowns almost daily at times. Her studies have growned to a hault & even though she is a very bright girl she has not been able to carry out 3 of her GCSE's last week. She has officially left school & should be going onto 6th form or college, but no plans in place as I am waiting for the local authority to access her EHCplan which hopefully will help to find her a suitable provision for the next 2 years of her education/ life skills learning?! A very frightening & lonely part of this journey when you are literally left alone with no help or support to assist you as a parent. I have already fought for 6 months to get the plan under way, but it was undertaken too late by her school.

Good news for our youngest daughter who has settled well into the same medical needs provision her sister attended, but never really settled. She has just completed her first full week of full time lessons from 9-2.30pm. Also been out to the cinema with 2 new friends she has made at the school.

I have been to my doctor & told him how I am feeling & he has increased the dosage of my tablets to try & help balance my moods etc. I hope they will work? I have become so exhausted from so much fighting & caring for such a long time for both of our girls. We are a very small family of 4, a team, a unit. We have access to a good medical team now, but things move very slowly & there are always more appointments, reviews, telephone calls to make.

 I have made a few lovely connections with other parents who have special needs children. Also autism awareness speakers/advocates/ authors via the internet, which I am nervous of doing but am continually pushing myself to make these important connections as part of my own education & understanding.

Also I have recently developed my own facebook, personal blog page raising autism awareness by sharing posts I find interesting & my own blog posts too.
Please do take a minute to check it out, like or share please.


 

Thank you for reading my post today.

Until next time, take care.
xx



GOOD NEWS 
BAD NEWS
EVEN BETTER NEWS


Hello again, I must of written this blog a thousand times in the early hours of the morning, lying in my bed having difficulty sleeping. Sometimes I just push words & the days events around in my mind until I can wait no more. Spilling out my thoughts that have taken up so much space in my busy head for too many days & turning them into a blog post is my way of processing my emotions & expressing my feelings surrounding my life as a wife, mum, carer & autism advocate for our two daughters.


The good news is surrounding our youngest daughter with ASD plus anxiety disorder & her recent settling into her half day, short stay, medical needs school. She has really begun to open up her tightly closed wings, over the past 5 weeks. It has been so beautiful to watch after her 9 months at home, unable to attend her new Secondary School in September 2014. It is early days but we are all so proud of her & how she has handled herself throughout this very stressful & upsetting time, at such a delicate age.


The bad news is surrounding our eldest daughter who has ASD & struggles with depression. Her meltdowns have really increased to daily & since last October 2014 she has sadly been unable to attend her medical needs school.  
I am thankful & grateful that she is now getting more support than ever before, being transfered to a different autism team.  Also I have strongly avocated for the need for her to have 1-1 support in a more suitable school environment for post 16 over the next 2 years. This plan is called an Educational Health care plan (EHC plan). I have worked hard providing lots of information in support of the application, as school felt she could cope without this? Her presentation at school is what they call "Masking" until she arrives home & then has a massive 2 hour meltdown. Her medication has also been changed & other health care options are being discussed as possibles?
It has been a very frightening time for our family coping & caring for our daughter when she is such pain & confusion. The meltdowns are very long & incredibly exhausting for all of us. Feeling drained is an understatement afterwards. Also being prepared for the sudden onset of one leaves everyone feeling anxious & on edge. Her loving sister always trys to offer her help too, as it so distressing to see her older sister during these times without feeling totally helpless. She is a true star & is a very strong & compassionate young lady with an enormous heart of gold.


I have taken my pain & recently started my own Facebook personal blog page raising autism awareness by sharing posts, articles & my blogs plus images chosen from Pinterest that help me to get through my day with a calmer heart & stronger soul. I will continue for as long as it feel right, as with my blogging too.

The even better news is our family holiday to a beautiful hot & sunny resort for a week. We decided we really needed a break away together after 6 years of uncertain times for our girls with many different chapters leading up to their eventual diagnosis of ASD.

I was thinking, it has been there all the time since they were born. The memories are still vivid & painful for both myself & my husband now we know why our girls struggled with so many things, that friends children did not? 

My tears came about 3 nights ago. Our daughters said it was good to see I had emotions & to let it go. I have fought for so many years my tears had frozen & only momentarily unfreezing when someone said something kind or did something to help our girls without a struggle on my part. That brought tears to my eyes with utter gratitude for the ease & kindness that was being shown to me. But that night I could not stop & I needed to acknowledge my pain & actually just how many professionals I had met & talked to, argued with, listened to & agreed with during that 6 years.

 IT TOOK MY BREATH AWAY
 


So looking forward to our much needed respite & wishing for good moments, cherished memories & sunny smiles on our special break away together.

Thank you for reading my blog post today.

Until next time, take care.
xx

All images are taken from Pinterest


SHARING SUNDAY




Hi, yesterday was another very difficult day for my family. Our eldest daughter is really struggling everyday with massive sensory meltdowns. We are coping & caring for her the best way that we all know how. 

Learning & loving every day.

It meant that my blog post which I try to do on a Saturday to give me a little me time & creative focus was impossible. 

My attention was needed closer to home.


It will be a very short post today, even though I feel I have very much wanted to blog for about a week as my head is full of fears, worries, joy & sadness. I have not found the right time to do so as my time is in demand being a mum & carer to my two adorable girls on the autistic spectrum. They also struggle daily with other emotional & physical difficulites, which I care for & help with too.


I am sharing with you today her wonderful creative short video which she has edited & selected beautiful music to go with it. This took her about 3 hours to finish. 

She managed to focus on this beautiful video, after a very distressing hour long meltdown. We are so very proud of her.

 I would so much love to share with you some of her amazing skills, wonderful talents, huge passions & magical creative vision.

I am sure you will enjoy watching. 


Thank you so much for reading my post today.

It is another difficult day here for her, so we are treading carefully & helping her to see her beauty & worth.

Until next time, take care.
xx

All images are from Pinterest



SHARING SATURDAY



Hello again, I am a little later posting my blog, as many other things have rather overtaken my time today.

 But I am now ready & excited to show you my big share for this week.

  I am very proud to introduce a very special blogger,
 my 16 year old daughter with you all today.

  The Perks Of Being Me 
 Disney, My Little Pony, Aspergers

http://theperksofbeingme-x.blogspot.co.uk/


She has been writing her blog for almost 2 years now & has published over 150 posts & has received 39,500 views to date.

It has been a truely magical way for my daughter to showcase her passions, interests, talents & creativity.

 
In October 2013,  five years after many difficulties began to develop surrounding her general health & eventual school refusal, a diagnosis of Autistic Spectrum Disorder (ASD) & Chronic Fatigue symptoms was given.


This means she struggles daily with socialising, sensory overload leading to frequent & intense meltdowns, controlling her emotions from high to low in minutes, anxiety, depression, relaxing for sleep & also difficulties being able to understand others needs & rules. Sudden excitment or suprises, including unexpected visitors to the house or gifts she hasn't chosen herself create so much anxiety that she experiences almost instant meltdowns. Unable to attend school anymore she is in her final year & is hoping to achieve 3 GCSE's in English, Maths & Cope.



Her dream is to one day work for Disney.

She is a self learner & has taught herself how to do lots of amazing things to create her beautiful blog site.

Disney is her special place, which she calls home.

A magical world of sidekick characters & cute animals, beautiful princesses & tiaras, magical music & fireworks, fantasy & fun, love & belonging.

She is finding her voice through creative writing about her loves, Disney, My Little Pony & Sims, a virtual reality computer game.

 These three interests are my daughters focus during her days & nights. She has explained that she uses them as educational tools that help her to develop many social skills by listening & remembering the stories & the conversations of the characters.

Please take a look at her blog, as I think it is really great & as a family we are so proud of her continuing achievements on her site.

 In some posts she also speaks about her own personal journey of embracing & accepting her high functioning autism & how the diagnosis has helped her remove the mask, that she had no idea she had created when trying so hard to fit in with her peers for many years. 
She is now more comfortable with herself & her interests. 
We as a family are also re-learning, more accepting, forever supporting, lovingly caring, always encouraging & proudly loving all of the special qualities & passions that she shares with us.
 

I also have some exciting news as about 2 weeks ago I created my own personal blog facebook page called 

~ Autism through Collage Connection~
https://www.facebook.com/collageconnection45

Please check it out & like, share as I am hoping to continue to highlight autism awareness & acceptance.
I have found my interest, my passion & I am being very brave & pushing myself to follow my dreams too.



Thank you for reading my blog post today.

Until next time, take care.
xx

All images are taken from Pinterest
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