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“Listen to what carers are telling you”: Lisa’s parent carer story

My name is Lisa, and I have two children who have received a formal diagnosis of autism. When you have met one child with autism, you really have met ONE child with autism! Our two children are the complete opposites to each other, and their autism presents completely differently.

Being a parent carer can be very lonely and isolating. It’s become even tougher at the start of this academic year. My daughter, who is in year 6 at a mainstream primary school, is unable to attend at the moment because she is suffering from autistic burnout, due to years of masking and ‘pretending to be ok’ at school.

We are currently trying to get her an EHCP (Education and Healthcare Plan) to help clarify her needs and fully determine what the right educational provision is for her going forwards. However, getting to this stage has been a nightmare in itself.

We had to apply for a Parental Request for the statutory needs assessment, which was refused twice. We managed to get the decision overturned during a mediation meeting, but it has been so draining. We are now in statutory assessment and are due a decision on whether we will be granted a EHCP in December.

I didn’t identify as a carer at first. I just assumed that I was a parent to two children with additional needs and got on with it. However, I attended a course for parents and carers who have autistic children and during this, I spoke to a representative from Swindon SEND Families Voice. She signposted me to Swindon Carers Centre, which was when I completed the assessment with Swindon Carers Centre and realised that yes, both my husband and I are both carers.

Identifying as a carer, and being able to speak with other parent carers, definitely makes a difference. We attended the curry night social evening organised by Swindon Carers Centre and it was so nice to be able to talk to people that ‘just get it’. They don’t judge. Being around other people who are in similar situations makes you feel that ‘yes we’re not the only ones’.

The more you talk to other people, the more you realise that you are doing a lot more than other parents with neurotypical children. It’s the planning and preparation of everything, you’re constantly thinking ‘what’s happening today?’ You have to think about what you can and can’t do as a family all the time. With the shopping, for example, we can’t take the children. It’s just so stressful for them. My daughter’s social anxiety is massive, and she hates being around people, noise and crowds.

Not very many people realise what it means to be a carer. There is a very traditional thought process on what a carer is, what a carer looks like. I don’t think people realise that parents can also be carers. It is assumed that you have a naughty child or you’re just too easy on them – you let them do what they want. There is a lot of judgement out there. I do get that, because if I wasn’t in my situation, I wouldn’t have got it either, but this mindset does need to change. What others don’t understand is that you have to learn to pick your battles, and save your energy and effort for the things that really matter.

The effect on my mental health and wellbeing is extreme. I find it very hard to relax. Part of me likes to be kept busy, I am always reading up on how I can help the children. My daughter struggles to communicate about emotional regulation, so it’s trying to second guess everything all the time, being that person to make sure everything is ok. I dread to think what would happen without me.

What tends to happen is that I reach a point where I experience my own burnout and have to shut off. This happens a couple of times a year, where literally I’m in bed for a week, sometimes longer. I’m really lucky in that my husband gets that and takes over to the best of his ability, but that’s the price I have to pay. It’s taken me a long time to realise that’s what happens instead of fighting against it.

The one thing we miss, is having time to ourselves as a couple. We can take time out individually, but it can be difficult to have time out as a couple because it is difficult to leave the children with anyone. When we do go out together, it just feels rushed and it is never enough time. I do feel that my husband and I are just existing, we’ve lost our individuality.

If I could say one thing to professionals, to decision makers, it would be to listen. Parent carers, they are not saying things to be difficult, so really listen to what people are telling you. You may not see it, but that doesn’t mean it’s not there.

You’ve only got to look at the media and see the number of children self-harming and taking their own lives because they’re not being listened to. Their parents have been telling people for years and nobody listens. That’s why we’re in a mental health crisis, it is something that has been around long before Covid-19.

My daughter is currently unable to function, but I’ve been telling people for years that she needs more support. My daughter now has her statutory assessment coming up, but she’s refusing to speak to people. She’s said ‘why do I have to talk to people, I’ve already told them. Can’t they talk to each other?’ And she’s right really. It’s not just once or twice, people want to hear the same information four, five, six times.

Now that she’s at crisis point, a lot of people are involved. However, the reality is that a lot of this is going to be too late, the damage has already been done. Everybody is just looking for that one piece of information that they want to hear. Don’t just listen to the one bit you’re interested in, maybe talk to each other and put the needs of the child first.  Be Proactive NOT Reactive.