As the mum of a disabled child, charities have been our life support in lockdown

For years my family have struggled in our own personal lockdown while the rest of the world carried on around us.

I’m a full time carer for our disabled daughter, Ava, and my husband works as a contracts manager to support us. We live just outside of Chelmsford in Essex, along with my other child, George, who is 15.

Shortly after Ava was born in 2007, she was diagnosed with cerebral palsy and complex epilepsy. She is non-verbal and blind. Her conditions are classed as life-threatening and life-limiting, meaning she requires 24/7 care.

When news of coronavirus hit, I convinced myself it was another form of flu. We spend our lives making daily risk-assessments about what is safe for Ava depending on her rapidly changing health needs.

Just the simple act of waking my daughter up in the morning may induce seizures. If we go out with Ava for the day, we have to think where we can – with dignity – regularly reposition her fully dislocated hips in order to manage the pain. If it’s too hot or cold, she can’t regulate her own body temperature so she can become poorly very quickly.

The day that lockdown was announced on March 23 changed everything.

I remember watching the evening news with the family in a state of utter panic, as the tears rolled down my face.

As Boris Johnson directed everyone to ‘stay at home’, I thought about how Ava had an admission at Great Ormond Street Hospital just two days from then for a bone infusion to help strengthen her bone density.

I immediately worried that it would be cancelled or postponed – and it was double edged when GOSH called to say it was still on, as I knew I’d have to take Ava on my own without carers to help me.

We were facing weeks and possibly months without carers because we couldn’t risk Ava being exposed to the virus. The usual coughs and colds can make her poorly enough and this new threat had already killed an alarming amount of elderly and vulnerable people.

My mind raced back to the memory of Ava being resuscitated following a seizure, brought on by a simple infection, when she was nearly two. I watched a paramedic run with her lifeless body in his arms through to the rescue department in A&E. He clearly didn’t think she was going to make it and came back to check on her later in the day. I will never forget his face.

Ava could easily become a statistic if we didn’t take lockdown seriously.

I was frantically messaging other parents in our special needs community who helped to calm me down and gain some focus.

Within a few days, this intense fear abated and strangely, it almost felt comforting to know that everyone else was joining us in this unusual way of living.

However, it was extremely difficult to say goodbye to our support system, vital therapies and education – not knowing when they might return.

The first week was all about trying to develop a schedule. We attempted to fill the hours with activities that stimulated Ava and protected her mental health.

Initial support then came in the form of online music therapy from a charity called Soundabout, which uses music to unlock the potential of people with learning disabilities, as well as local music therapy services in Essex and support groups and hospices.

They are all run by people for whom it’s not just a job but a passion, and their dedication to always be there, no matter how dark the times, is a testament to the commitment they have to continually fight for inclusion and leave no family unsupported. They continuously put statutory, government-funded services to shame.

These services opened up a whole new world for Ava.

After years of being stuck at home with nothing to do, we suddenly had an entire curriculum of activities and experiences via Facebook Live, Zoom and Youtube that the rest of the world can access any time.

Using easily accessible items such as bowls of jelly, scarves, bubbles and tin foil to name a few, we’ve been on journeys to the jungle and the seaside, taking African safaris and hot air balloon rides.

We’ve listened to theatre shows, had online mindfulness and relaxation lessons and wheelchair dancing classes.

We’ve laughed, whizzed around and made all sorts of weird and wonderful noises; it’s brought fun, love and laughter to our living room.

Yet it’s awful that it took a pandemic for these options to finally become available to our family.

Statutory services always seem to over complicate things and have reams of policies and procedures in place before they’ll try anything, which is generally more about protecting themselves from criticism than concern for their client welfare.

Charities, however, prioritise quality and speed of service to their clients, which means they’re able to respond far quicker in emergencies. It’s these same charitable services that are already committed to ensuring these new ways of working continue to work remotely and be a lifesaver for so many people.

For years we have seen statutory funding for disabled children’s services cut and cut. The Government tells us how much money they’re committed to ploughing into supportIng us, but they fail to recognise that it’s often far short on what they took away from these services the previous year.

We are used to having doors closed in our faces and having to fight to get services and support for Ava.

In contrast, support from charities has meant that her days have been filled with so much joy. We’ve been able to create a virtual world around our precious girl.

Now that lockdown is easing, Ava’s carer, Rachel, has been able to return – albeit in full personal protective equipment.

After nearly three months of providing 24/7 care for Ava, I sat on my bed in the first week of June and the exhaustion hit me like a tidal wave. It’s been a few weeks now and I’m starting to feel more human again.

It’s been hard seeing the rest of the world return to their usual routine; it makes me fearful and anxious. This is because I see pictures on the news of people behaving irresponsibly and it makes me worry that lockdown will be enforced again before those who are shielding have even started to experience any form of freedom.

We are watching the country get back to the new normal, but nothing has changed for us yet. If the general population take too many risks, we could be left isolated for many weeks or months more.

As a mum who lives with the daily strain of being solely responsible for keeping my child alive, I doubt I will come out of lockdown without crippling anxiety. But I know I need to, at some point, start making those steps for Ava’s emotional wellbeing and mental health.

I can only thank these charities with all my heart for being so quick to react and reach out to families without exception, many of whom they never have and never will meet in person.

Many beautiful things have emerged from this awful pandemic and I pray that they’ll remain, because for so many families there will never be a normal.

For many like Ava, prolonged periods of ill health and complex disabilities often prevent people from accessing things that everyone else takes for granted. Suddenly everyone else has realised how difficult and frightening isolation can be.