Dr Elizabeth Kyte is a lecturer on the MA Women’s Studies at UCC. Elizabeth has a six-year-old daughter, Evie who has Down Syndrome and an 11 -year-old son Matthew, who is on autism spectrum. Elizabeth and her husband live in Glasheen, Cork. She is the founding member of We Care (www.wecarecollective.ie), set up for parents and care-givers, supporting children with additional needs. To get in touch with the group, you can email WeCareIreland2021@gmail.com
This is Elizabeth’s story.
We were told about my son’s autism a few months after the birth of my daughter. The healthcare nurse came to us and said that Matthew wasn’t responding to the new baby in the way she would have hope to see.
We were told my daughter had Down Syndrome when I was still on the delivery bed. Needless to say, that the first six months of my daughter’s life was a blur. That was a kind of a lesson in resilience. When I looked back at that time, I feel I can get through anything.
I would say coming together with other mums and being really united with my husband has helped me cope. You think how would I cope, but you do cope. You are way stronger than you realise. Once you get through that, you feel you can do everything. I know we don’t have the worst story. There are families I would have met in hospital where there are children with such complex additional needs and such heart rendering situations. Mine is a small drop in the ocean.
We were so vulnerable, and we had no way of protecting ourselves. We did really need someone there at that point, to help us, but there was just nothing there.
There really is no care for new parents of children with additional needs. When my daughter was born, we were given an information pack with contacts for Down Syndrome Ireland and that sort of thing. The social worker told us, look you’ll be fine, you’ll get back to your normal life and you’ll live your life. It’s very much protocol that they have to come visit you and make sure you’re linked in with disability services but that’s very much the neonatal and the medical side of things.
There’s nobody to help you figure out how to access services, negotiate waitlists, benefits or any of that. You just have to figure it out yourself and parents are just doing it, and starting from scratch over and over again, which is the reason why we set up the We Care group.
I’m so shocked how I hear the same story of struggle over and over again, especially with people trying to access autism services.
It’s just the same unnecessary trauma being enacted through carelessness in general in the system.
The individuals working in these services professionals are lovely, but there’s just not enough of them!
I think it’s about politicizing the issue and transforming it in people’s minds from being an issue that’s kind of charity and to actually something that is political and on a par with other needs like LGBT or gender. It’s about trying to get it to be seen as a human right – an entitlement in the best possible meaning of that word.
We all have the right to thrive, to have joy in our life. I think we’re a bit conditioned into this martyr syndrome in Ireland – that we must endure and not expect help.
I hear all the time, ‘Sure I just don’t know how she does it!’. It would be great if parents and care-givers answered that question and shared how they do cope, and when they can’t. We need to turn that question around because actually, people don’t want to know how you do it. I don’t want to do it is what they mean. I’m just glad it’s you and not me, is what they mean.
I think we feel that if we acknowledge people’s dependence and vulnerability, we would have to give up something of our own privilege.
I remember being in Marks and Spencer’s cafe with my daughter who was probably under two at the time. I was just so proud of her and we were having the nicest girly day – her with her baby chino and I was having a coffee. An older who sat at a table next to us started chatting to her and suddenly said, ‘You must have been so disappointed.’ Even now, that turns my stomach. I replied, ‘No, look at her, she’s a joy.’ She was carrying pain too. She actually opened up and her son had killed himself, and it was more about her pain. Everyone has their pain. But it was still hurtful. It was still an experience in stigma.
I remember another time I was in a cafe with my daughter who was around five months old at the time near where I live in Cork city. The area is full of students and a group of girls walk in chatting and laughing. They were talking about a party they had been to, and were gossiping about someone who had been there. They said, this guy should not have been at the party. He looked like he had Down Syndrome.
For a moment I was going to leave actually and I couldn’t finish my coffee. I didn’t know whether to break up the conversation to invite them to look at my beautiful daughter sleeping in her pram and ask them if she’d ever be invited to the party.
This shocked me more because they were young, they were educated. I still feel guilty that I didn’t stand up for my daughter in that moment. I still think about that now.
In terms of the system, there’s just so many multiple examples of discrimination.
We have lost access to Special Needs Education twice with my son because of underfunding, and there is an ongoing battle for the summer provision of support to include children with Down Syndrome.
There is such a gap between bureaucracy and people’s lived experience and trauma. This is what I actually find most trauma inducing. It’s so cold, so careless.
The Department of Education has this policy that if your child has a sibling with additional needs who is also qualifying for the scheme, you get less hours. I found this made no sense whatsoever so I applied for both of my children. I got a phonecall last November from the Department telling me they’d make an allowance this time but that it was a once-off and don’t apply again.
This doesn’t make any sense. Surely families with more needs should get more support.
I’m really proud about setting up the We Care group. I feel more exhilarated that I have ever in my life and it’s turned a very dispiriting, oppressive experience into something very empowering. We’ve kind of creating this community of brilliant women.
I’m just so proud of my kids on a daily basis. They’re the ones who go in every day to school, and they adapt, rather than the world adapting to their needs. My daughter is thriving in mainstream school. She’s such a personality and character. She’s such a dynamo. She’s the only girl in the football team and scores the most goals! I’m proud of the family we have become and I’m proud of the way we promote a positive model of rethinking care.
The last lockdown was extremely tough. I was just sort of lost. I ended up on antidepressants. Because of the hyper vigilance with my daughter, I was on 24 hours a day. I couldn’t sleep. I was a wreck. When you’re anxious and depressed, you think you’re such a bad mother and that you’re failing. Going on medication wasn’t a failure. It was the best thing I could have one. I got my sleep back and I felt like a different person.
During the second lockdown in January, we were locked out of school and there was no support. I realised that we hadn’t even thought to ask for special education or provision for our children and no one offered it. They weren’t even thought of at all and that I found so shocking. How far down in the priority list are our children and carers as well? There’s no care for carers. Nobody was coming to help us.
We’ve had no services from the disability services in around 18 months, and neither have my children. They’ve reorganised the disability services in Cork and we now hearing that they won’t have the capacity to offer any direct intervention or therapies for children and that they will train the parents to do the work. We already do all that work anyway.
Instead, we could aim high, and Ireland could become a model for how it should be done.
The mental health for so many children has been hugely neglected and there’s countless stories of mums in our group whose children and particularly girls who are on the spectrum self-harming and reacting with risky behaviours during lockdown.
The mental health of carers is way down the list of priorities too. It’s actually the airline’s advice to put your own oxygen mask on first before your child because you won’t be any use otherwise. We can’t be there for our kids unless we are getting more support.
Self-care has become an industry – a substitute for proper care. It’s another thing you feel you should do. Some days, I don’t have time for a shower never mind meditate. It’s another expectation. It’s disempowering actually.
My advice to someone in my shoes would be that at the end of the day, it’s all about you and your child. Don’t listen to other people’s voices. Find your own needs and your own voice.
Secondly, the ideas of disability are so at odds with the reality of your life. They’re all socially constructed and it has no bearing on your life or your future with your child and you have to focus on that.
Those moments of joy and your relationships with your kids – that’s the most important thing, and so try whatever way you can to cast off those other voices.
It’s those who have lived experience of what you’re going through that will be your biggest support.
99% of people are amazing and I get great strength from that. Amazing things await you and just because things have turned out bit different to what you expected, you’re way stronger than you ever realized.
Myself and my husband would say that this has been the most profound experience. It let us see the meaning of life and we are really glad that we’ve had that.
