Families of children with disabilities in COVID times
Maud Stiernet is a Belgian accessibility consultant with more than ten years’ experience in copywriting and communications. Maud has authored articles or research papers on innovative best practices in children’s rights. She has been a foster mother for 8 years and chaired the foster families’ organization of Wallonia –Brussels. She became an accessibility consultant, driven by an unanswered need she felt when caring for a disabled child. She is fond of inclusive stories.
This is a blog post summarizing findings from one month of quarantine gathering testimonies & from my own lived experience and knowledge.
First, a reflection on the different realities families face and how society is in a kind of denial of how to address the physical limitations of the carers who are not superhuman. Then a reality check based on testimonies from all over Europe and some basic recommendations related to space, time and education and psychological safety. Primary needs are not only about health and adequate nutrition; they are also related to time and space. We cannot expect families to take on everything previously covered by the social and educational sectors. The whole system is now reliant on informal care but this should not mean that children and particularly those with a disability shouldn’t be monitored and supported by whatever means are available.
Informal care on the rise
Families of children with disabilities are all around us and are all different: families of children at home, or with children in institutional care, kinship foster families and in some countries families of institutional care personnel (in COVID times, some countries allow workers in institutions to bring children into their own family care). Those families are all informal carers. As are most siblings within those families. There is an urgent need to be attentive to and respond to individual circumstances, personal experiences and new constraints.
Listening and understanding human limitations
In COVID times, please don’t tell a parent of a disabled child that everyone struggles! Don’t tell them this is temporary and the situation will return to how it was before. Unless there's a real emergency, the most important thing anybody can do is to listen to the families’ needs. Most families with disabled children come up with life-saving and anti-stress programmes that no one else could have thought about! If they ask for help or complain, this has nothing to do with a lack of love or attachment or parental dedication. They probably aren’t in a “burn-out” situation either but in another dimension, beyond burn-out but coping with extraordinary force. No particle of their body should be distracted from that goal. But certainly, their administrative burden can be alleviated.
In these extraordinary times, we must acknowledge that there is no definitive list of what a human being is able to handle or not. We get all sorts of guidance for managing stress, for limiting screen time, for protecting against COVID-19. Some of this is now available in easy-to-use language. But for parents with children with disabilities this is little reassurance unless you can talk with someone who has experienced what you are going through. There are so many additional fears: How far can I help my child? Will I recognise my limits? What happens to my child if something happens to me?
There is no book telling you that carrying your 15-year old daughter on your own, out of her wheelchair when an assistant can’t manage the same is too much. There is no such book, no such recommendation. So you don’t give up until your body does. Because you do it for this super hero of yours who lives in a body she can’t move. You are her legs. Have you ever been someone’s legs? Have you ever felt what it can do to your heart and hers? It is painful and heart-warming at the same time. Empowering for both in a way. But mummy, I am older now; we weigh the same. One should not lift its own weight many times a day.
Real daughters, sons, mothers and fathers
During COVID, parents share how they feel on social networks when possible. Some write about their experience in the press, on social media in Austria, Belgium, The Netherlands, Spain …. The father taking his children through the village for a morning walk so they can keep a routine, bringing fresh bakery bread to the grandparents with spiralling thoughts about what to do when the first breath of fresh air is over. The single mother almost fainting in her apartment, struggling to find the right resources to fulfill her child’s needs and calm her son. This mother at fear for her son to be victim of COVID19 triage. This other woman who looks at her foster son and thinks: One day you can bake with me, the next you forget that the stove can be hot and almost burn yourself. I am so happy I could react in time. Should I stop your favourite activity because you need attention for those memory ups and downs caused by Fetal Alcoholism Syndrome? Some are using inflatable pools or mattresses in their living room to serve as a safe playground within the confines of their home. Finally, those deaf parents who would like to ask questions to support their family, there is a helpline for parents, but not an adapted one for sign language users.
Schedules, space, school, safety as a feeling
Looking at lived experiences should be enough to understand realities and act. But all too often parents and their children get told that they need to find time to rest, that they need to organise themselves better, or there is just no support available. If exhaustion can be considered a parental responsibility, then let us look at other, simple parameters where providers, governments can act: schedules and square meters.
In 24 hours, you have 3 shifts of 8 hours. If you are a single parent with a disabled child who can’t sleep you have 3 shifts to take care of. Don’t be so sure she/he can sleep when the child is sleeping. Surely not when they have other siblings to take care of. One person 24/7 should get priority assistance. This is also true for 2 parents of a disabled child with other siblings. Picture the amount of people per square meter. A disabled child needs space. To regulate, to find balance and to learn. If you can’t help with assistance, help with safe space (note that safe space is different from public space). Do all you can not to separate families if there is no violence. All too often children are institutionalized for the wrong reasons including their disability or problems that escalate and then negatively impact parents’ health.
In some countries, we read that children in special education are not receiving any guidance nor education nor pedagogical support. This could be provided for all. Through adapted means. Even if there is some time needed to adapt. But of course what can we say to those families whose children were already unschooled not by choice but by exclusion? We might have time to think about them now?
Manage priorities. Check safety first. An outburst by a disabled adolescent is a storm and a potentially a life threatening event for the caring adult/siblings. Sometimes you cannot prevent. Some physical conditions make outbursts unpredictable, even under medication. If physical safety comes first, it does not mean that psychological safety can’t be reached in parallel. It is always possible to help at different levels: the carers, the neighbours, the community network. Any reaction that helps calm down, deescalate without stressing parents even more. Any calm gesture made with trust and respect can help. A family with a disabled child needs empowerment; needs to feel safe.
And many do their best to help meaningfully. Continue to find ways to listen, exchange with those families… Don’t consider it is all right to lose the 10% of children who can’t be educated online. 10% have names, needs, hopes, siblings and loving networks. They will not be resilient if they are sleep deprived, missing appointments, treatments and adapted learning opportunities. They are among the strongest, right now but still human.