Mrs H is the force behind H2Au: the stuff of our life. Her blog shares the story of her family’s life with Autism, a rare chromosome disorder and auto immune disease. It has also become a passionate place to raise awareness of autism in girls and masking.
A finalist in the Truth About SEND category of the BAPS Awards, here Mrs H tells us a bit more about herself.
What inspired you to start your blog?
My beautiful daughters. My oldest who is now 11 took over two years to be diagnosed as autistic due to her masking and other people’s lack of understanding about how autism can present in some girls. All the while we were going through that uphill struggle, my youngest daughter was born and she was globally delayed in her development. With hypermobility and hypotonia, she couldn’t support her own head properly, couldn’t sit up by herself, didn’t weight bear and didn’t babble. She was non-verbal and physically dependent on me for everything.
Eventually diagnosed with a rare chromosome deletion just before her first birthday, at the time of diagnosis she was the only one in the world diagnosed with it. A daunting fact to get our heads around. My husband was diagnosed with autism in 2013 which did help our oldest daughter finally achieve her diagnosis, which came a couple of months before she turned 6. We had our hands full with lots of therapies, learning Makaton, learning about autism and chromosome deletions and generally adjusting life to suit both girls.
Part of that adjustment was a relocation to Scotland in the hope that a rural, village life and escaping the pressures of the South East of England would help them thrive. We’d had a good support network down south, with a team who understood our complex situation and we thought we’d be able to build one in Scotland too. We were referred by Social Services to their counterparts in Scotland to support us – sharing all their notes and records which followed the girls’ stories from birth and included all the evidence of their challenges and their diagnoses etc.
Unfortunately, the team in Scotland disregarded all of that and decided they knew best. They didn’t recognise that the girls’ successes were a result of early intervention; ultimately months and months of hours of daily therapies. All evidenced and documented in the girls’ notes. They didn’t recognise any of their challenges, choosing to only see their successes. The total lack of experience of masking and lack of knowledge about the way (some) girls on the spectrum present, meant that they didn’t recognise the challenges we faced as a family. All the therapies and managing both girls’ needs wasn’t sustainable without support though; I was exhausted and had recently been diagnosed with a stress induced autoimmune condition and I was struggling to cope without some respite. The ridiculous amount of medication I was (and still am) on knocks me for six, add in sleepless nights with an anxiety ridden daughter and this all meant I was limping through life.
Instead of helping though, Social Services here in Scotland decided that I had emotionally abused my girls by having sought diagnoses for them and that I was making up their needs. They decided that I was suffering from Munchausens-by-proxy now known as Fabricated and Induced Illness (FII). These false accusations of abuse and FII were so traumatising, they nearly broke me. To be falsely accused of abusing my children completely tore me apart. It took over a year to clear my name and that stress on top of trying to best support the girls with their individual needs, as well as manage my health was a very difficult time. It was also a scary and lonely place to be.
I realised just how little was understood about (some) girls on the autism spectrum and masking. I wanted to do my bit to try and share as much information about it as I could in the hope that no one else ever goes through what we have been through. Five years later, I still have PTSD from the trauma of being falsely accused. I still have trust issues when it comes to professionals we encounter along the way. Ironically, in the meantime, my youngest daughter who is now 8 was also diagnosed with autism on top of everything else! So, whilst we still have no support or respite, we do manage. The girls are total champions and they work hard every day to overcome the challenges they face. They are my brave, beautiful warriors and I couldn’t be prouder of them. My parenting motto is #whateverworks and we work it out as we go along. Sometimes we get it wrong, most of the time we get it right but either way we work at it as a team and we continue to celebrate every success!
So to answer the question, my girls are both my raison d’etre and my inspiration. My hope is that I can help make the world a bit of a better place for them as they grow up by sharing our story and for them to know they have me in their corner no matter what, because they are so absolutely perfect exactly as they are!
What other blogs/organisations do you turn to for advice?
In terms of moral support, I tend to turn to my friends, many of whom are fellow bloggers. There are too many to mention here and I wouldn’t want to forget someone… but lots are my fellow finalists and they are all amazing! I also rely on groups/pages run by autistic adults for advice as they can offer me an insight/perspective that I wouldn’t otherwise have. There is also a small local autism charity that I have occasionally turned to for advice in the past – they ‘get it’ and generally have good ideas to help in specific situations. They also run great training courses for parents.
Describe yourself in three words
Kind, courageous, (and sometimes a bit of a) chatterbox!
It’s a tie – my top two are Galaxy Counters and Walkers ready salted crisps and if I’m being really naughty having them squashed between buttered soft white bread to make a crisp sandwich!
Favourite thing to do if you have some ‘me’ time?
A lovely hot bath while watching Netflix (and eating counters) or catching up with friends (not in the bath though!).
If there was a film of your life, what would it be called?
‘You couldn’t make it up.’ I think that sums it up nicely.
Which talent of yours are you most proud of?
My writing and creativity and being a good mum!
If you could be one fictional character, who would you be?
Wonder Woman – I know a few butts I’d like to kick 😉
What’s the closest thing to magic?
Love (and my girls’ laughs).
What advice would you give to someone who wanted to start blogging?
Everyone’s story deserves to be told so don’t second guess yourself, just do it… and don’t let fear hold you back.
What are you most looking forward to at this year’s BAPS Awards?
Putting faces to names and actually meeting so many of the friends I have made online, having a night away in a hotel and hopefully some SLEEP (after a good party though!).
The Baps Awards Ceremony takes place 4th November from 6.00pm. This year, due to COVID19 the event will be held virtually. Do not let that put you off though. The Awards ceremony will be just as glam, fun and full of wonderful people as ever. What’s more, it’s a free event so Sign up to join in now!
The BAPS Awards
The BAPs (Bloody Awesome Parents) Awards allows SEND bloggers to be recognised for their talents, tales and achievements. Founded by Bringing Us Together and My Family, Our Needs, these awards celebrate SEND Bloggers everywhere. Click here to find out more…