Thursday, 7 February 2019

TimeToTalk to parents of kids with SEND about their mental health

What's it like to bring up a child with additional needs? It can be wonderful, amazing and full of things I never thought possible. But it can also be very tiring and stressful, and for many it can have a serious impact on their mental health. And as it's mental health awareness week, it seems a good time to share.

My children will no doubt be the greatest achievement of my life. But like many parents, I've had my low moments. Not long after our eldest was diagnosed with autism I couldn't get him out of the house to go to nursery. He needed to go through some routine in his bedroom but I needed to get out and go to work and in anger, I pulled the curtains off the wall and screamed. I cried my eyes out on the phone to my mum as I drove to work after dropping him at nursery.

In the last year, after I dropped my kids at school, I came back home to pick up my wallet. I couldn't find it, tore the house apart and then finally lay down on the kitchen floor and cried.

Neither of these moments lasted long, but I can still feel the anguish as I write about them. I'm fine. I'm happy. But I know these were both caused by the simple stresses that accompany raising my gorgeous kids.

I am not alone. And I'm not affected most of the time. One in four people in the UK have a diagnosed mental health issue, but some stats say as many as undiagnosed. So for many, it's a far bigger story.

Some sources say that the chronic stress of caregiving ages mothers by ten years. Parents of autistic children get sicker, too. A 2012 study found that the parents of children with autism were more likely to get common ailments such as colds, coughs and headaches as a direct result of the increased stresses linked to their caring responsibilities. Parent carers I know directly relate their illness to this stress and anxiety. Not convinced? The NHS even list being a carer as one of potential causes of stress.

I asked a quick question "Has having a child with special educational needs (SEN) affected your mental health?" I was overwhelmed by the responses.  I've included here.

"My anxiety has been at an all time high since having ethan. The constant state of being in the unknown plays havoc with my anxiety and mental health. Not having time for myself to replenish is very hard."

"Since having 2 kids with sen and never getting a full night sleep I've become isolated, rarely going out on my own as my anxiety and stress goes too high & I struggle to cope in a busy environment with children who are having a meltdown as I feel like everyone is staring at me. I have zero time to myself as one of them is with me 24/7, I'm always tired, moody, less tolerant of things & I don't like that person I've become in some ways"

"It does impact my mental health greatly although not due to anything Eliza does. It's people with judgemental ignorant views and comments that got to me and for years I was so anxious when taking my children out to play areas, restaurants etc because I knew at some point, we'd hear the sniggers as Eliza stimmed or faint whispers and staring with a pointing of fingers in our direction. They made me feel like I was doing something wrong, taking my children out in public. That constant feeling of being judged and watched is hard to shake and it can lead to feelings of isolation as well as sending anxiety levels high. We go out regardless and as time has gone we no longer even notice these people."

"It really does. We celebrate every small victory in our house. Every negative has a negative impact on my mental health because though I know I am allowed to feel overwhelmed and very emotional I need to dust myself off and try again tomorrow. That eventually leads to a mega collapse in my mind. We need to release. Probably more often than we allow ourselves."

"There's a lot of additional stress which comes with managing our daughter's condition (Pathological Demand Avoidance). I'm constantly thinking ahead, not able to make firm plans and always having to make sure there's an 'escape' plan. Fun family holidays are virtually impossible now, so we don't have that way of relaxing. So there's definitely an impact on our mental health as parents, and we need to find more inventive ways of unwinding."

"Having a child with SEND has definitely impacted on my mental health but not because of her. When she was diagnosed I was mentally in a very bad place because we were given a diagnosis and then left to it. I felt guilty and like I was letting our daughter down and failing because I didn’t know how to help her. Although I’m in a much better place now I worry about the future and about things others luckily don’t have to think about such as what will happen when we die."

"Having a child with severe physical disabilities has impacted heavily on my mental health as well as my physical health. I developed severe anxiety and depression when Lyla was two and went onto anti depressants. The difference was like night and day, I hadn't realised how debilitating my anxiety in particular had become. I still rely on the medication now even though I am in a much better place but I wish there was more physical mental health support in the form of counselling readily available for parents and siblings in the years following a diagnosis when you are raising a child with disabilities. " 

"It completely and utterly impacts on parent mental health. Lack of sleep, elevated stress levels and lack of breaks are not a great combination. All mum's but particularly SEN mum's need mental health check ins to prevent those suffering falling through the net as it is particularly isolating."

"Having a child with SEN has a major impact on your mental health. Personally we experienced extreme lack of sleep for the first few years which had a massive impact on me. After my son's diagnosis I felt very isolated and a huge pressure to learn how to support my son. Unfortunately the world is full of misconceptions about autism which in turn creates lots of pressure and stress on the parents. We are blamed and judged in a daily basis which in the early days broke me. I am in a better place than I was but when your child struggles so do you and unfortunately most children with SEN have many struggles."

It can be hard reading, but I'd also like to highlight these two comments from 47 Stripey Socks and Starlight and Stories. Other points of view, well worth reading. Thanks to everyone for sharing. xxx 

"I know I’m probably not supposed to say this, but I think, if anything, my mental health is better than it’s ever been. That may sound odd, even untruthful, but I assure you it’s not. One study found 79% of parents of a person with Down’s Syndrome reported feeling more positive since having their child, and this has certainly been the case for us. There’s even a name for this phenomenon."

"For me it isn’t the SEND itself that causes the issues. It’s the battling with medical and educational professionals to get access to what is needed. The waiting, the not knowing, the feeling as if you are failing because you can’t make things happen at the speed they should."

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