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
