Battling for answers – My quest for the non-existent definitive
By Charlotte Mellor
Scarlett is five years old and in her very short life she has had a hell of a lot of things thrown at her. At four and a half months we were told she had a problem with her vision, which in itself is an awful lot to comprehend, but some days it would be wonderful if it had just stopped there!
I speak with many parents through my role of running Through Scarlett’s Eyes and it is clear that we all share one thing in common, the shockwaves following the diagnosis of a sight problem continue to plough throughout our children’s lives far later from that point of initial diagnosis.
Each parent, family, carer have their own personal story about how the hand that our children has been dealt goes much further than the point when we are first told your child has a problem with their eye sight. In a variety of ways the problem with the sight can just be the start.
In my personal experience when Scarlett was diagnosed we were given very little information or support for that matter, Scarlett is unable to see anything, but at that given time I recall going away and considering glasses. Seems really stupid now, and I suppose there isn’t a blame game to be played here, but it is my belief that inadequate support provided by the health services and doctors too keen to tell you about the ‘best case scenario’ meant that I was left very confused by the whole affair. It is important to mention, that unfortunately there has to be an element of ‘waiting and seeing’ for want of a better phrase in my particular circumstance. I have been asked many times questions by people who were keen to know more about my daughter and her sight problem, things I just simply didn’t know the answer too. Over the last five years I have become much better at being able to explain that I don’t know what the future holds, and not just with regards to my daughter’s sight but also with life itself. I have somewhat become accustomed to the meandering roads.
There seems to be an obsession when it comes to parenting with milestones, I can see why this exists, I have had many shared joys when my child has achieved something, whether it be walking, talking, rolling over! I am not for one second saying that celebrating your child’s goal reaching is a bad thing, I am a parent, I know what it feels like. Outsiders seem obsessed with the ‘will she be able to do that’ elements of life. I too was also obsessed by that in the beginning. The internet is a wonderful thing and it gives me a fountain of knowledge at my fingertips, which of course was essential as I felt from the point of initial diagnosis that I knew so little, and was always desperate to know more. In some ways though I have found it harmful, built up expectations, absorbed so many different stories from so many different people, experiences, families and lives! As much as it can be wonderful there is some detriment to it, I thought I’d began to develop a clearer picture of what my daughter would grow up to be like and in my personal experience that has not been the case.
See, following being told the Scarlett had a visual impairment, the diagnoses have not stopped there. From very young Scarlett was able to sing along to songs, exactly like children of her age, I remember thinking she was flying away and she would very easily be able to keep up with her peers, sight or no sight. We now know ‘no sight’ is what we are working with, despite that she was flying, our ‘development journal’ a book of what she should be doing and when!
I believe that the development journal delivered to me purely as a ‘guide’ at some points made me feel like a failure as a parent, the gaps between what she is supposedly be able to do as a child who had a visual impairment and the months age at what she was supposedly be able to achieve it grew and grew. From flying in the beginning, I soon began to see a plateau develop and I became less able to put the big fat tick in the box to say ‘yes she can do this’ and ‘yes she is on target with doing so’.
At times I did feel like rubbish over this, combined with seeing and reading things on the internet it became more apparent that there was more to Scarlett than her inability to see.
It wasn’t instantaneous, but the grief returned. She was no longer flying, see she wasn’t matching her sighted peers with her milestone achieving, which was fine, she had no sight, she wasn’t doing the same things as other visually impaired children I had seen and read about on the internet and we had got to a point where we could no longer tick off the boxes in the development journal. The something else was there, just a big bag of more unknown.
It is not uncommon in children who have a visual impairment to have an additional condition running alongside this. In Scarlett’s case her speech and language delay, delayed development in her understanding teamed with some of her quirky behaviours meant that the autism word started to make an appearance. See it is really hard with Autism, because it is literally a diagnosis based on opinion, it is not really quantifiable and the spectrum is that broad that it too can become confusing! We are kind of walking the same path with this whole Autism thing at the moment, once again just not knowing, or waiting and seeing. Once again I took to the net, accessing as much knowledge as I could with regards to the subject. There are pros and cons to this kind of research and the more I read the less I felt I knew. This didn’t sit well with me really, search for answers, not just for myself but for the rest of Scarlett’s family, and still knowing nothing.
I would consider myself proactive and I think a key component in being proactive is that point of reaching what you have set out to do. So basically I had spent a long time trying to come to terms with not knowing when it came to her sight, then this new meander in the road meant that once again I had to go through the same process. Sensory processing disorder was also another term that was used for Scarlett, and even that, it is so individual, even further investigation into the area meant I was no closer to knowing what the future may hold. No better equipped to answer the ‘will she be able to do that’ question that I am asked by others, but also ask myself.
I really pushed hard with the professionals to get a definitive answer, seems silly that I had already faced a similar situation previously with her sight and then was going through the same motions with this latest development. I sat frustratingly on waiting lists, asked blatantly, well is she autistic or not? Will she talk or not? Will she be able to live independently or not? Literally mirroring the same desperation for a definitive from when we discovered her optic nerves were under developed. I know why it is important to me, I found a great article from the Wonderbaby.org website that kind of helped me navigate around what I was feeling, it discussed Autism in Blind Children, “Is My Blind Child Autistic? One Parent’s Experience”.
I become very torn between my necessity to investigate and just relaxing and letting what will be, be! If you get the right answer for your child you are able to access or dismiss certain therapies or techniques. There is also a part of me which feels that if I do this I am truly not accepting of Scarlett and her condition. It really does mimic a grieving process, one that never really stops.
Earlier this year and after a long hard battle I managed to get Scarlett seen by Great Ormond Street in London, we were seen by the Neurodisability team. I had become so frustrated with not having a definitive answer and it had been going on for so long, I can’t remember at which point I thought all the answers would lie in GOSH and their professionals, but when I did finally get an appointment it was a massive relief. “Finally, I would know”! I had pegged a lot of hopes on this visit; I just expected the whole process to be entirely different from the one I had been through up North with the doctors and services local. Maybe that had a lot to do with the internet, seeing children who were visually impaired visiting GOSH, the hospital being renowned for its experience with visual impairment and development. But to be perfectly honest, it was three people in a room, asking countless confusing questions and observing Scarlett and felt no different from the times this had happened before with our local professionals. Same questions over and over again. I at the time was trying to keep my little bulldozer of a daughter from either trying to escape the room as she was unhappy or from crashing and climbing about.
Being subjected to hundreds of questions, where I was expected to recall tiny details about my daughter’s life from 4 years ago! I felt stupid stumbling over the answers, trying my hardest to recall all the facts, panicking, thinking, “well if I don’t know the answer, then they won’t be able to give me the answers I need”.
It really was not an ideal situation that day, down there on my own, with my spirited daughter, long day travelling. It really did hinder my ability to give and receive information. When they relayed all their ‘findings’ I’d reached such a level of mental and physical exhaustion, Scarlett had had more than enough, it just literally washed over me. I could absorb so little, the odd ‘buzz’ word, I recalled them dancing around the autism word, I can recall them looking at me with pity, I recall them dodging questions like bullets, it was just a big blur of nothing definitive! Once again mirroring the last four and a half years.
On reflection I had gone through this massive battle to get to a place where I thought I would get an answer and nothing had changed. No further away or closer to unambiguity. So what was it all for?
I was just upset, trying to navigate back through the streets on London to the train station in the dark just crying, not a few tears, like full on crying. Think I cried for 48 hours straight. Over what though? I didn’t even know what they had said properly! Seemed pretty much the same thing I had heard over and over by local professionals. So if nothing had changed from before the three hours we had been there, what was the big problem?
It has been a while since I visited Great Ormond Street, so I have had a good few months to process it all. So here’s where I get to the bit where I tell you what I learnt from this experience, I never write this stuff to scare people or for people to feel sorry for me! I get up every day and write as candidly as I can and talk with parents and offer advice because I have a burning desire to help.
Life is ambiguous, there are no conclusive outcomes! My drive for a definitive took up an awful lot of my time and energy. Time and energy that I will never get back. All we have in life is the moment, for my personal experience I get all my pleasure from my moments by being happy and seeing my child happy.
I see no benefit in worrying about the future, I’ve said this before previously, worrying is like praying for something happen. Scarlett is happy, and I think that is the key to life, so basically she’s doing it, every single second of everyday, getting a good old grip of the key to life and showing me how it is done! And with regards to the “will she be able to do that” questions, well who bloody knows? I’ve been trying to play guitar and not been able to do it, that’s not the end of the world is it! Each child has an individual potential and I believe viewing it like that, and aiming to help her achieve that is a much more beneficial way to help guide her through her life, I have no concerns with quantifiable milestone hitting!
I do know for certain that if I could bottle her up and sell whatever bit of magic she possesses then I would be quids in!