As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years.
A husband and four children comes with challenges but nothing out of the ordinary accept one child was born deaf and needed additional time and support.
The deafness diagnosis brought challenges within the family as along with looking after two young and active sons there was an array of appointments to deal with and rarely enough time in each day to get everything done.
Thankfully back then I had a husband with a flexible job and a very understanding manager, parents who were very hands on and an amazing support system in my area.
There were a few fights for support in school but nothing that wasn’t ironed out quickly.
Molly was born deaf, she knew no different and was a happy child who just wanted to be able to communicate she made parenting her an enjoyable challenge.
Each little achievement was rewarded with a smile that made all the hard work worth every single moment.
Deafness was not a misunderstood condition, there were audiologists, teachers of the deaf, social workers for the deaf, deaf clubs and events and all locally.
For me it was all about putting in the time, listening to my child, to the experts, lots of patience, oodles of encouragement and watching my little girl thrive and thrive she did.
As the rollercoaster went for us it was like a child’s ride deafness was ok, it wasn’t frightening, there were lots of deaf children, it was doable, time, support, help and belief and we reached the end of that ride without tears.
A confident youngster achieving that of her hearing peers, great job.
The killer blow for me as a parent was the Usher Syndrome diagnosis, my deaf child would become blind, possibly the most frightening thought of all. We were all plunged into darkness, literally it was more like the ‘haunted house’ ride.
Few had heard of Usher Syndrome and if they had had not met anybody with it let alone worked with a child with it. There were no others with the condition in our area, the support required now was very specialist and it was not available.
There was panic, there was a gaping hole in support services and this hole would need to be filled by specialists direct from Sense.
Nobody was trained to work with Molly, more departments became involved all sympathetic often overly so but their way of supporting a young person very individual / unique in her needs was sadly very makeshift and dare I say trial and error.
It was the most stressful time of my life.
There were now more appointments than ever and very few local. Lots of travelling a very unhappy and confused child and nowhere to turn.
I remember being very thankful of a visit from a lovely lady from Sense who would work with Molly. Molly’s support team locally and put together a specialist report incorporating her needs.
One person who really could make a difference, a lady who made a huge difference in our lives, sadly Molly would only see her once every 6 weeks and yet her whole education relied upon her input. I am very thankful of that support however it wasn’t really enough to educate not Just Molly but everybody that worked with her.
It didn’t feel like it was enough and so here my tenaciousness took a hold of me, it was not ok to just make do, it was not ok to feel isolated by a condition, it was not ok that the many professionals around us seemed to more feel sorry for Molly than support her and enable her, it was not ok to just do nothing.
I set about learning as much about Usher Syndrome as I could, each appointment be it audiology or ophthalmology I would question, question, question, research online. I made myself known to Sense, I began networking to find others living with, working with or with knowledge of Usher Syndrome, I attended conferences. I became the ultimate pain in the proverbials – I was a parent on a mission and my child would succeed.
As it turns out I was very wise to do all of those things, along with working and nurturing my other children. I was prepared for the oncoming battles, every single one should be completely unnecessary if people are more aware and finally it would appear there is a way for this to happen.
I have fought with the education system, with the DWP, with Student Loans, with Occupational Therapists, with ATOS and why?
Quite simply they expect my daughter to be something she is not. They assume she is incapable of very much, they do not think outside of the box.
People in these departments are decision makers, they are making decisions that can change the lives of vulnerable individuals and yet they do not know enough about the condition and we cannot expect them to know everything about everything but they do need to listen to the experts, the person they are often assessing and to consider how and why a person functions the way they do.
When I tell you one ATOS doctor that assessed my daughter told us he had ‘googled’ Usher Syndrome the night before you will understand how unacceptable the system really can be and it is not good enough.
For those who have met my daughter, heard her speak, seen her do things, her passion about making a difference need to remember a few very important facts.
The only reason she can function the way she does is with the right support, the right technology, the right equipment an environment acceptable to somebody who is deafblind and a huge amount of effort.
My whole reason of putting this blog together is not really to talk about my life history but to indicate how hard things have been made over the years and how not everybody has the energy to fight these battles and in effect are let down by the system, however, after visiting Maneesh Juneja’s VR Workshop in London I see the way forward is right there.
Already there is VR of dementia so lets have VR of Usher Syndrome it would make the lives of all from patient to professional so much easier.
VR would bring empathy and understanding to those working in healthcare to the decision makers and to families all of whom would then be able to make more informed decisions and provide relevant support and assistance and an end to the never ending battles so many face.
Often described as tenacious and on occasion a ‘rottweiler’ by Molly, the truth is all I want is the best for my children just like any other parent and so like everybody else I will continue to ride that rollercoaster until I can safely get off!
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