I think it’s easy to forget just how intense hospital appointments, examinations or assessments can be for young children.
White daunting clinical rooms, medical professionals look barely recognisable due to COVID19 PPE, the once smiley welcoming faces are covered by blue masks. The buzz and hustle of the hospital corridors, patients whizz past wheeled in beds and having to be prompted to stay to the left side keep a distance, all whilst not being able to grasp an understanding why there’s so much change. No longer are there colourful enticing play areas, all stacked up with caution signs a far cry from the social distraction there use to be, now there is nothing to keep young children’s anxiety at bay.
The concentration, bravery from uncertainty and expectation required from a child with deafness and non verbal is exhausting.
Just like the gentle waves of our happy place, it was calling in our names for a shore side adventure.
From my own experience, frequent visits as a child to hospital requiring tests, travelling to unknown and unfamiliar hospitals, blood tests to operations, watching faces of your parents fall as if they’ve just watched their entire house be gobbled down by a sink hole to the earths core, when they’re delivered a diagnosis’ or unexpected news… that in its self can leave a scar of emotional and anxious trauma.
I’ve always wondered, Livy being unable to have a great and consistent access to sound, being unable to communicate what she’s experiencing feeling wise, is she scared, anxious or nervous? Yet as a parent I suppose we can almost sense the changing of feelings that radiate from our children, the emotions can come in any form regardless if the child is aware or not being able to understand what they’re experiencing emotion wise. Anger aggression, uncontrollably crying, restraining or giggling from excitement and happiness.
Livy lacks so much control over her life and the environment she’s in, being able to roam freely, feeling the sand beneath her toes and let her soul decide if she takes a turn into the the sea or explore the depths of digging in the sand. Collecting as many rocks and seashells as her heart desires. Or just how much more the boot of the car can take, I’m pretty sure we’ve collected enough sand and seashell debris to make the sandpit at Wicksteed Park green with envy!
Obviously there’s myself close by, following her looking as if my own mind’s sat nav has gone awol doing swoops and loops after my daughter, stops and starts, dashing and immediate halts. But I wouldn’t change it for the world as I absorb the warmth of her authentic smile and crazy blonde curls, each ringlet taking a different direction of their own amongst the salty winds caress.
When your child visits a healthcare setting, the medical professional is trained to recognise triggers in children and prevent or reduce healthcare induced anxiety and trauma. By giving your child the choice, which alternatively gives the child the feeling of empowerment in a powerless, unknown environment. Using a agenda so the child knows what to expect at the time of their visit or future visits and what is expected of the child, are they having blood tests? Do they need to cooperate in order for treatment to work? By highlighting strengths and reframing weaknesses provides resilience, and lastly being able to recognise when emotional support is needed, normalise the child’s common fears and anxiety in a situation. As a parent I’ve slowly and gradually learnt to not apologise for the way Livy reacts in these situations. And nine times out of ten, the professional has reassured me it is a common reaction and totally normal.
C A R E – Choices, Agenda, Resilience and Emotional support.
Yet, with Livy having a barrier that connects her with the hearing world and non disabled society. I cannot begin to imagine the sense of helplessness when she’s confronted with the surroundings of a hospital. She must begin to bubble with fear like a over boiling pan of pasta on the stove and anxiety flushes through her little body as she remembers pain associated by historical tests. Due to Livy’s developmental delay, and severely significant speech and language delays, cognitive thinking delays, Livy cannot communicate her needs and feelings through words so she communicates through her behaviour and body language. Feeling powerless and out of control, of what little control Livy has in her day to day life, it goes without saying she presents emotional responses in appointments. As a parent it’s down to us too, to anticipate her reactions and comfort her before she’s emotionally erratic.
At times these emotional responses have had a significant delay in audiology assessments which will impact finding important results and delay seeking further medical treatment like being delayed for a referral of participation in Cochlear Implant Assessments. By no fault of her own, she must be allowed time to bond and reduce her anxiety in order to be able to trust the person and in return she cooperates in what is expected of her.
Although we try to sign alongside speech and with use of PECs or visual photographs, Livy still struggles to anticipate what is expected of her and what the day may bring. And I always wonder if she forms a lump in her throat from anxiety, when she steps into the car whilst wondering where will her journey take her, if it’s not a beach!
All three children adore the outdoors and what nature has to offer. There’s something incredibly comforting as a parent knowing that they don’t crave adrenaline from rollercoasters or expensive trips out. Pop them to the beach and we can spend endless of hours creating new memories, new games that create continuous excitement. Adrenaline comes in all forms, whilst in nature, you can find tree swinging, rock climbing, finding the biggest Conkers, who can make the biggest splash in the puddle, whilst we may be crazy for adventuring in the pouring rain or swimming in the sea as the sun warms our skin. It’s clear this fulfils all of Livy’s sensory seeking needs and she’s most content.
As were approaching another operation for Livy, a life changing one, for cochlear implants, I can almost taste the fear of anticipation.
Holding your child close to your body whilst others restrained her legs, arms and neck so that the anaesthetist could place a mask over her face to induce a sleep. The sheer sudden panic and sharp look from widened eyes, as she fought for her life to push this mask away… nobody could communicate to her what the mask was fire. Nobody could prepare her for what was to come. And she couldn’t ask or express her thoughts and feeling either… I could see and feel that she felt in danger as her body should have been limp from inhaling the gas, she got stronger as she fought, until the gas eventually worked.
Unlike many others, Livy cannot understand or grasp the concept of pre surgical preparations. She doesn’t have the ability to ask questions to ease her sudden feelings. She won’t be able to digest the information on how it will feel to have a mask placed over her face, and that as the effects of the anaesthetic takes place you will become drowsy. I cannot comprehend how incredibly scary this must be for her.
But for now, all I can hope for is that Vitamin sea continues to help Livy heal and trust in the calmness of nature.