Being a parent of a child with autism and learning difficulties (additional support needs) might bring many challenges in life, being a parent of the same child in times of pandemic, brings a new level of stress and worries. For us, parents and for our children who might not understand what’s happening around them those times are a real test and a real struggle.

Our story

For the last 3 years, we have been co-parenting. Our children had two homes, I was taking them to mine usually on Tues, Thur and weekend overnight. This arrangement was working well, mum had usually 3 to 4 night for herself, I had a chance to be with my kids, they have their own room, toys, clothes at mine. Everything that they would desire, they even decorated their room as they wished.

Our boy, he’s 10. Attending special school, almost nonverbal, living day by day in his routine which helps him cope with everything. Monday till Friday – Taxi Pick up from home at 8:30 in the morning, school, work at school, home around 15:30, 3 times a week dad coming to pick him up and his sister and dropping next morning before taxi pick up. Sometimes he’s going by himself, sometimes he staying at home with mum and dad spend some time with his sister. On Saturday, at 10 am his support worker is always taking him into a soft play, at 5 pm dad is coming to pick him up with his sister. On Sunday, around 6:30 pm they jump into daddy’s car and are going back to mum’s. Bath, bed and back on Monday to school routine. Holidays 2 weeks with mum, 2 weeks with dad, 1 week with mum, 1 with dad and back to school routine. Other breaks similar, depending on the year. Pretty smooth right?

additional support neeeds

Pushing me away

Marking calendars so he will know what to expect each week, he’s happy with his routine and now? Everything out of the window.
My son hasn’t visited me since lockdown, not for a single hour. He’s agitated and upset. When I’m arriving to take him to mine, he’s running away from me, telling me “Bye Dad”. Sometimes he’s so angry for me being just present there, at mums that he’s pushing me away and try to punch me to make me go away. Our son is very cuddly, he loves closeness and hugs, now because of changes he’s pushing me away, he’s just not himself, I feel like he’s blaming me for all the changes.

Sometimes when I’m visiting them at heir mums it takes him an hour, sometimes two, till he will come close to me, hug me, sit with me and smile. It’s heartbreaking to see him so crushed, so not himself, not mentioning how it makes me feel as his dad – I know that this is not personal, somehow sometimes I sit in my car and cry after visiting them. It’s hard to see my children dysregulated like that due to COVID19.

I feel bad also due to not being able to give a break to their mum, It’s not like she’s not coping. No, she’s great, but I would like to be able to take some of this on me, sometimes I am able to pop in for longer while she will do some shopping, sometimes I take my daughter away so at least she can have just our son at home. It’s not easy.

Challenges beyond our life

Can you imagine a much more challenging child? Someone who is dealing with bites, hitting, self-aggression, autoregression, without access to support or proper respite, with no rest, living for the last four weeks in fear, not able to sustain a high level of support due to coronavirus.

Some children and adults thrive or just cope with everyday life due to routine, predictability of each day, using alternative communication as PECS, time tables, Now and Next, with COVID19 and whole lockdown which is necessary to survive, their world just crushed. I used to work in Special Education School and when I think about some of my old pupils and what they and their families have to go through, now my heart is bleeding.

As a society, our system at this point, and we – parents and carers, are not equipped well enough to offer the right support and make the right choices for our children with additional needs. It’s heartbreaking, it’s hard, unprecedented. I guess that we have to think about this, have some kind of plan and risk assessment in the future as I cannot imagine this scenario not being repeated in the future.

Sending love to all parents, carers of children and adults with additional needs. Please keep strong, if you struggle, please ask for help Рplease call Children 1st Parentline on  08000 28 22 33 free.
Parent line is here to help, you can talk to them, offload, share. They might be able to connect you with other organisations and reach out for you. Please, let’s keep each other safe and connected.

For us, parents of individuals with additional support needs, any help or chance to have a chat it’s a blessing.