International Womens Day - Challenging Attitudes Towards Mothers of Disabled Children with Jenna

Mary_Scope

Part One - Celebrating Disabled Mothers and Mothers of Disabled Children

Part Two - Navigating Motherhood With A Disability with Sarah

For our final part of our week long celebration of International Womens Day, this is an interview with Jenna who is a mother to 2 disabled children.

We hope this will help shine light on the experience that some mothers of disabled and how society can challenge and transform attitudes towards them.

How has your experience as a parent to a disabled child shaped your attitude towards disability?

I’m more aware of societal barriers disabled people face. I think until disability affects your life, it’s something you can be quite naïve to because you don’t have to think about it.

I find it easier to talk about disability now, and encourage others not to shy away from talking about it either – so many of us will be affected by disability at some point in our lives but we still treat it as a taboo subject.

How have you advocated for your children's needs and how are you empowering your children to be advocates for themselves?

I’ve had to advocate for my children to have adjustments in education, and for their needs to be recognised. As my children have become older, I always encourage them to speak for themselves.

If we’re in meetings with school, or with paediatricians, I encourage them to answer questions, and make sure I don’t immediately answer for them.

Speaking for our children is something that parents can subconsciously do because we want the best for them, but it’s important to give our children to opportunity, and confidence to speak up.

What advice would you give to other mothers raising disabled children?

Don’t feel guilty about setting boundaries, and making time for yourself. You’re not only a mum. Being a parent of any child can be exhausting at times and it’s necessary to find time to look after yourself and not have to be available to the demands of others.

This means sometimes saying “no” to your children, partner or friends and family so that you can recharge and do something that supports your own wellbeing.

Also, don’t feel afraid, or too proud to ask for help. Whether it’s from friends and family, a support service or the local authority.

What changes in attitudes do you hope to see towards mothers of disabled children in the future?

I think there are a few damaging attitudes towards mothers of disabled children – that we are “Warrior mums” painting us as aggressors, or people who are always “ready for the fight.”

I guess it’s difficult for people who have never been in our position to understand the sleep we lose, the hours of research we do and the constant barriers we have to try and break down so our children can have equal access to education and play.

Another negative attitude we face, particularly for parents of neurodivergent children, or children with behavioural problems, is that we don’t parent, or discipline properly.

We find ourselves being judged and scrutinised when our child has a meltdown in a public place, or can’t emotionally regulate. I’ve had people suggest that I’m letting my child get away with bad behaviour when my response is to calm his distress rather than discipline his actions.

What are some ways that friends, family and wider community can support mothers raising disabled children?

Remember that their identity isn’t only being a mother of a disabled child. When I meet with friends, I don’t always want to talk about my children, or being a mum. I enjoy music, rubbish TV programmes, theatre and socialising – I want to talk about those things sometimes!

Offer help if you’re in a position to – we often won’t ask for it. Help doesn’t have to be a big gesture, it could be as simple as sending a text to remind them that it’s a school non-uniform day tomorrow – I say that as a mum who has had to run back to the school with casual clothes for my child on a few occasions!

Tell them they’re doing a good job, and acknowledge their child’s achievements. Our children might not hit the same milestones, or achieve the same things as non-disabled children.

But our children often exceed the things that were expected of them, or overcome real barriers to get a small win, and our pride is no different to that of other parents.

What's the most common inaccurate assumption about you that you have experienced as a parent of disabled children and what do you think can be done in society to challenge the attitudes that creates those assumptions?

Probably that I don’t have much knowledge or expertise. I’ve found that to be an attitude held particularly within my children’s primary schools.

Teachers have been surprised at my knowledge, and ability to advocate for my child, and to learn that I am also a professional, as well as a mother.

I think there is currently an assumption that parents overreact, and are overprotective of their children – this can sometimes cause parents to feel that their observations and requests for support are dismissed by schools.

I think that there needs to be more resources allocated to SEND training in education settings, as well as more emphasis on SEND when university students are studying to become teachers.