Our Nightmare Journey home!

Shocking! Shame on #AmericanAir

Autism Kids on Tour

I am writing this in a very jet lagged and exhausted state, in a dressing gown and with no eyebrows, as I wait for my lost luggage to be delivered before I can take my kids to get some food. The luggage contains all my clothes and makeup!

We began our nightmare journey at 2am American time on Tuesday. First was the three and a half hour drive to Miami from Orlando with the hire car telling us one of the tyres had a fault and my son holding the cool bag incase he was sick.

Next, after finding the car hire return, we checked in at Miami airport. We were to be flying Miami to Washington on American Airlines and then Washington to London Heathrow on British Airways.

I had contacted both airlines in advance and made requests for special assistance as well as booking seats to ensure we…

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Autism – My Wild Journey

Autism, my wild journey,
I am an Autism Mum.
I am an advocate,
I am a warrior,
I will always put my children first.
I will survive on very little sleep.
I am the expert when it comes to my children.
I am the one who had to research my child’s problems and difficulties, trying to find a possible cause after (years) of all professionals and school involved with my daughter did not have a clue. They all knew my daughter had learning and behavioural difficulties since the age of 2 ⚠️ For years My daughter was bullied with no friends, she was isolated in school and had a naughty book.
I believe all professionals dealing with children should have autism awareness training, and they all need to be able to spot ASD in girls too, so there can be early intervention as this is supposed to be key.
Autism spectrum disorder (ASD), I did not know anything about it before I started obsessively researching, took me a very long time in doing so, especially more so when juggling a management job, family, relationship breakdown, endless school meetings, whole load of other things being thrown at me, at the time I felt I was researching myself, my own difficulties I have had through life and my childhood all started to piece together and make sense.
I plucked up the courage and mentioned in a school meeting if it was possible my daughter maybe on the spectrum, was from then the school senco helped the process being started on the path to diagnosis, I was afraid at the time of speaking up that I believe my daughter is on the spectrum and then being accused of fabricating illness.
If I did not research for my child’s sake, would my daughter still be labelled as a naughty child with her naughty book, her future heading towards the mental health route?
7 years later after my daughters difficulties was flagged up by her preschool, My daughter was finally diagnosed with autism spectrum disorder along with learning difficulties at the age of 9 ⚠️ In 2016 by a wonderful professional Team. Since then my little girl has received a further diagnosis of a rare chromosome disorder.
I withdrew my youngest from mainstream school this year for her own wellbeing, I am home educating, best decision I’ve ever made! My little girl is happy 🙂 I Wish I could of done that for my older children due to their own problems they had during mainstream, but I did not know the knowledge then, that I know now. I also didn’t have much knowledge about home education back then.
I have a teen still in mainstream, got my fingers crossed it works out for at least one of my children.
I am a woman, I am not afraid to say I have Autistic traits, I am nearly 40, I am finding my voice so I can speak out.
I have had depression and anxiety for as long as I can remember, controlled (more or less) now with medication.
During my child’s diagnostic assessments, My child’s doctor advised me that I could carry on though life with a self diagnosis of autism spectrum disorder as many people do or I could get an official diagnosis for myself through my GP as one might be helpful in the workplace for me, there is supposed to be a clear pathway! My gp was less than helpful, more patronising and put me back on medication that I had been on before. A common question to be asked is “are you feeling suicidal?”, even if I felt at the time I was, would I dare say I was? What would be the outcome of that? Not a good one I bet.
I consider myself a strong person, life has made me this way, but way too much was going on in my life middle of 2016, I even had to open the padlock on things I kept blocked out from my past, things I cannot yet speak about to this day to anyone.
I was struggling to stay strong, I left my career, my head felt like it was going to explode, months later, I had an emotional meltdown in front of 2 doctors, I got referred to the community mental health team (cmht).
Roughly Two weeks later that I was diagnosed with social anxiety disorder in a (((30 minute appointment ⚠️))) yes only 30 minutes with a cmht box ticking psychologist, along side him was a nurse sat beside him which sat looking out of the window most of the time. Social anxiety disorder I also believe is a misdiagnosis. While I do have social anxiety, I do not have the disorder. If everytime you try and do something, you mess it up, you start to get pretty frustrated and you might want to give up. But I can’t give up on social interaction, you have to interact competently with people to be an adult in our society, stakes are pretty high on me pulling it off, truth is, I am bad at it and get misunderstood. The distinction between justifiable social anxiety and social anxiety disorder is important to me.
The psychologist told me about my diagnosis over the phone, he also said he (knew) people that had autism so he doesn’t (think) that I am on the spectrum, am I ok with that?? ⚠️ and he is discharging me back to my gp.
I’m not going to argue with that, what would be the outcome if I did? I also had my children looking at me whilst on the phone so I had to keep myself together with a smile and answers with yes, yes, ok.
I have TMI problems, I have a past, I have stories to tell, some secret.
Yes I feel scared at times for wanting to speak up and more so that I get misunderstood ⚠️
There is so many stories of injustice happening to autism families ⚠️  Injustice is happening far too much, A member of my family whom is on the spectrum, no diagnosis (please do not judge, not easy for everyone to get on the diagnosis path) is dealing with children’s services, there is injustice going on there with no where to turn to, no help. Various autism organisations have been emailed, no replies.
Over the years I have taught myself coping strategies and Anything of any importance I usually have to read more than once to make sure I have processed the information.
Now i am more aware about myself and I have more time with my daughter, I am able to teach her coping strategies which I taught myself and it Is actually helping her blossom.
I am not perfect, who is? I am what I am, imperfections included. I’m a good Mum, Grandmother, daughter, Granddaughter, Sister, Auntie, Friend.
I love my children, my grandchild, my family, my only best friend who’s known me since childhood, my pets.
I have an addiction to caffeine.
I have various interests and enjoy going on Adventures.
I will NEVER accept defeat.
I am on a wild Journey x