Are we finally coming to the end of what has been an extraordinary, challenging year?
Lets face it, the life of parents everywhere has been invariably change at some stage or point in time during the last 12 months. Life as a parent of disabled child has been no mean feat, the transition from parent to carer with the first diagnosis to Parent, carer, teacher in the last 12 months has certainly taken its toll on me and other parents who are in the same situation. At points there have been times when I have no idea what I am doing and where primary school work has made me feel like the dumbest person on the planet. Then there has been the endless 24 hours a day 7 days a week of having children under foot, with no spare room to move, breathe or hide. Groundhog Day at its finest!!!
We did it…….But Whats going back to normal mean?
We are so close now to being back to what is coined as normal, but what is normal? Is it going back to how life was before the Covid- 19 epidemic? What if your life wasn’t normal to start with? A lot of things have changed for all of us. Some of us have lost jobs, some are unable to work, some lost their support bubbles, you can not socialise, you can’t see family but what happens if all of these things were already happening before corona virus? As parents of disabled children, children with special needs, our lives are invariably changed as it is, many of us can not work as we care for these children, attend hospital, many of us can be isolated from friends and family. For me personally the biggest change has been the loss of family contact and the loss of a support network that I have built up over 14 year’s to help me, my husband and our children. They have supported me, cry or laughed with me, brought me down to earth or raised my spirits high, talked with me, shouted at me and been there at every step.
Was the last 12 months any different from the Norm for us? well we still had:
- The challenges, pain, upset, tantrums of leaving the house and spending a leisurely day out, or a day out shopping meant we were already well versed in not going out and so we were slowly becoming more and more isolated and limited in what we could do as a family well before lockdown came along and prevented us from going out. A simple trip to the beach means mammoth preparations and thought before we even decide what day we are going.
- Never ending no change in routine, yep even though we are in lockdown the girls still need that consistency, that feeling of normality that makes them feel safe. we have had to adapt no end in order to try and keep the routine of wake up, get up, daytime, night-time routines in order for the shit to really not hit the fan.
- Not seeing family, family gatherings, large gatherings, busy places? No problem with this at all the girls have been more than happy to do their bit and stay away from people, I need the support network hat I have around me and even though the girls do not love to have family around and can get bored very quickly they have adapted but I haven’t. I’ve felt isolated, alone.
- The endless lists of what we might need on any particular day. Do we need that or we do need this, what might come in handy, what might they suddenly and randomly want that if I do not have it a meltdown will ensue….so much to think about so we end up taking everything except the kitchen sink – how I miss the days of pushchairs which could be loaded up!!
- clothes shopping, food shopping, shopping of any kind? Dragging ( yes in some cases this actually happens) my children into the city, no matter the time of day has to be the most excruciating experience ever. Ever since they could learn to walk and leave the pushchair behind this experience is one that is enough to leave me with palpitations and in hives. why do we do it to ourselves? why? for me its simple, it means that the clothes are there in that moment, the food is available straight away. My girls are very tactile and like to feel the fabrics ( no trying on though they have to be washed first) and then there is price!! The clothes I want that are priced reasonably you can never seem to get online.
- The faff of waiting for the clothes or other item’s to come in the post, sending them back if they don’t fit, or are broken, waiting for the refunds, its just to bloody annoying when you have impatient little cherubs – ‘when are they getting here’ ‘ why are they not here yet’ ‘ where is the postman’ if the girls need something they invariably need it there and then, patience is not a virtue in this house at all.
- Long waiting lists for Diagnosis and professional help……Still the same but now will invariably be even longer and less support available
The biggest thing has been……
I have missed the close knit, support bubble of family and friends. Being in lockdown has meant not seeing family, not going out with friends, its meant no respite, no rest, no chance to recharge my batteries. its meant as a family we have been isolated from help and support and like thousands of other families through out the world, in a time of our lives when support, familiarity, help and care from the people and professionals around us is what we have needed to get through this, its been taken away and we have been left, alone, frustrated and praying for the end of the pandemic so that we can once again resume what is normal for us. Then there is the fact that the children have missed out on help and support for their disabilities due to long waits and no face to face appointments.
Its been a long 12 months, but the end is in sight with projections for a restriction free summer and hopefully an end to the pandemic – Hang in there we will get through it together
xx Leanne xx