27th April 2020 • My Family Our Needs

Hello all! As we head towards the end of April, I’ve had some time to think about how I would usually have spent it. Normally, we would be banging the autism awareness drum and my girls and I would be up and down the UK doing keynotes and filming roles at this time but, of course, we aren’t in normal times are we? We are in lockdown. We are either self-isolating or home far more than before due to Covid-19.

I thought I’d write about that because, right now, it’s hard to think about anything else. We are temporarily living a very new and strange normal where nothing is really normal at all and I have noticed a few things:

Inspirational online parents

With many children now being educated at home, suddenly social media is awash with free educational resources; PE classes, art, zoology, history and maths lessons. As lovely and selfless as they are, they are often accompanied by photos, videos and slideshows of parents doing all of these things whilst being in a spotless house with perfect hair and make-up.

Woah there with the peer pressure! If your days are being spent feeling like you’ve won the lottery because your young person has left their room and brushed their teeth – consider yourself winning.

We are in the middle of an unprecedented pandemic and if keeping a smile on your young person’s face and food in their belly is all you could do; please accept my virtual high five. You’re still winning.

Also, for everyone who is offering free educational resources for children at home, can we please remember there are thousands of home educated disabled children who have, through no fault of their own, very limited access to affordable online education? Could any of these brilliant endeavours be made permanent?

Juggling work

At the risk of being a hypocrite, it may sound odd to talk about how working from home without childcare is hard, as frankly, it’s what I do all year. However, this FEELS different. I’ve had some lovely friends email to say they have ‘no idea how I do this all the time,’ but the truth is, I DON’T do this all the time. In lockdown I can’t replace PE with ‘let’s drive to the nature park and jog around the lake and see how many ducks we can count.’ I can’t avoid demand avoidance issues like I did before, now that lessons are undisguised. They are what they are – lessons – and it’s tough to always muster motivation for that. I’ve no advice apart from bribery. Three lessons on the National Curriculum lead online course? That will earn them a treat!

I have been fortunate to be able to carry on my daughter’s maths and art classes as the tutors have moved them online. This has proved a lifesaver; not only to give her the education she needs but also to continue our routine. It also gives me an hour to work without distractions.

Grieving the plans you’ve lost

So many of us have lost something we looked forward to due to life changing so quickly. Maybe you were due to start a new job?  Take a holiday? A wedding you were due to attend or even just being able to take your child to see their grandparents? Maybe that is the only respite care you had and now it’s all on YOU? For some of us, we will have had serious medical appointments rescheduled and, in the most upsetting of cases, be unable to attend the funeral of someone who was close to us.

It’s ok to grieve not only the lives lost to Covid-19, but also the plans you missed out on too. It’s ok to be sad, anxious and angry about it.

Asking for help

With so much of my paid work lost, I thought lockdown would be quiet but it has, in fact, been the opposite. My low paid and voluntary work has reached capacity, as many of the families who needed support before lockdown are now in a state of emergency. The last few weeks have consisted of me making many urgent social worker calls to protect the families I support and I’ve been on call working in a multi-agency fashion with parents, MASH teams, social workers and the like. Their mindset and focus, more than ever in these times, has shifted to not only being there to support the young person in need but to empathise with the family unit as a whole. 

Many of my loving, caring, kind and non-judgemental  friends and colleagues are advocates, occupational therapists, social workers, NHS mental health workers and the like. They, like me, want families to feel able to contact them without fear or stigma in these uncertain times. Your local MASH, social services and youth support workers can be contacted via your local council website. Please do so, without fear of judgement, if you need some extra help at this time. This is particularly true for families with children who have disabilities and additional needs; they are there for you all.

Life is so very hard right now. I am wishing each and every one of you a safe, healthy and – I hope at some points – happy lockdown. From mine to yours.

Carly and the girls x