…The tough gets going.
Family life gets tough sometimes, you know the days where we grit through over grinned teeth to our partners, those days where your stomach physically turns over at the sight of the over multiplying washing pile, your ears are ringing from the concert worthy noise projected from your little darlings lungs. And the million of questions on repeat from your overly bored, wishing he was still at school, son. It’s potentially your 5th thought of the week, to order a take out, rather than cooking from the week worth of contents in your fridge just to spare yourself from washing a few dishes up.
Then chuck in the trials and tribulations of running a family home with a child of SEN needs. I know what you’re possibly thinking, my daughter looks ‘normal’ right? My daughter looks ‘abled’. When presented with the word Special Educational Needs, you automatically assume it relates to serious or chronic illnesses…
Livy has the following identified Special educational Needs;
– Profound Bi-lateral Sensory Neural Loss (profound deafness)
– Visual difficulties
– Significant delays in speech and communication. (Less than half her chronological age)
– Delayed cognitive skills
– mild/Moderate delay in social skills
– significant delays in fine motor skills
– mild/moderate delays in gross motor skills
– significant delays in self help and independence
– some sensory seeking behaviours have been identified including Livy’s tendency for thrill seeking, which can lead to dangers for her.
When your child has some what ‘invisible’ needs, meaning that Livy presents in a well health, abled child, you don’t always notice her hearing aids, when our challenges are invisible to the human eye, our secret pain and joy is almost alienated to those who don’t truly know and understand what it’s like, only being in a similar circumstance could you comprehend our day to day challenges. This is incredibly isolating.
There is no denying our home life is incredibly demanding, life in lock down means we’re under the constant pressure without unwinding time. Half the time I feel like bursting into tears and I’m unsure if this is because I’m stressed, frustrated or emotionally exhausted. Some days I don’t feel myself almost like I’m disconnected from my feet. I simply float, getting myself through each hour. We’re so busy trying to meet our children’s needs, we forget our own emotional needs and my partner who is working from home, is already burdened. I don’t think he would want to wipe away my salty tears, when I don’t even know why they’re falling myself. I’d prefer to sink into a pizza, in hope of swallowing my feelings and masking them with the pleasure of the smokey taste of pepperoni.
There are many times in the day that I will escape into the kitchen, which almost opens its arms wide and quickly as a kettle boiling gathers all my broken pieces, from the first sip of coffee I’m pretty certain those collected broken pieces are temporarily glued together again. As an often overwhelmed mum, I will hold my hands up that there is a consequence for having so many parenting demands, is that mine and the children’s dad’s relationship has had more strikes than a baseball bat. And often left feeling bruised and dented from the ever going shots of a ball.
I’ve looked at my daughter during a full on show stopping melt down, trying to rack my brain, as if a little admin Beksie is pulling out files upon files, as to what could possibly be wrong, her aggression and frustration can be volcanic explosive, and as hot lava runs down, almost like her hot salty tears. I can never understand her frustrated pain, although deaf myself I do not suffer any inability to effectively communicate, I cannot begin to comprehend how she must feel and the anger against the world she holds.
During this pandemic I have been able to press pause on my much loved job, with the absence of pressure from work and places to be, with such minimal time, I mean who decided that 60 seconds in a minute, 60 minutes to a hour, 24 hours to day was enough to divide between three children, run a house, keep a relationship afloat, maintain a career and juggle medical and educational appointments, which to have come to halt. The lack of pressure has become welcomed and replaced with quality 1-1 time. There’s noticeable changes within Livy’s behaviour when she’s outside exploring. There’s a sudden calm in her tornado, whirlwind nature. She’s at peace as I am too.
Being a outdoorsy family, surrounded in the open where we can see all shades of green until the skyline meet and amongst natures finest comforts. We almost take a break from our confined lives. And mainly from ourselves. For me personally, sat by a lake watching the ripples of the stream and focusing on listening to trickles, provide a sense of relief, for once I’m not talking about my daughters diagnosis’ or medications, I’m not listening to more tasks and advice surrounding my daughters care and needs. It’s just peaceful to us both to inhale fresh goodness and exhale the frustrations which home life can bring.