Thursday, 1 February 2018

Time to Talk with parents of additional needs kids about mental health

Father and son walk along a path with dark clouds overhead

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.

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.

But for many it's a 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 your mental health been affected by having a child with special educational needs (SEN) and if so how?" I was overwhelmed by the responses. Some of them I've included here.



Autism Mumma says she neglected her own health and wellbeing until about four years ago: "The catalyst was I got fed up with my daily crying and went to the doc, diagnosed with anxiety and depression. I was having panic attacks too. I have mental and physical stress symptoms. We fight so hard for our children that it’s bound to manifest in some way."

Faith Mummy had a period of bad mental health but has been off medication and free from depression for over a year:  "I still get very sad some days but seem to get through it a bit better. The grieving for my child was the hardest part to get through and realising this is for ever and he won’t ever get better. The fact he is still in nappies and non verbal at nine was the biggest issue causing me depression. "

Life and Other Stories Blog says: "I think it is impossible for your mental health not to be affected by having a child with SEN. The constant battling we have to do means there will always be times when we are questioning ourselves - are we doing the right thing, doing enough physio, getting the right education, etc for our child. I know I feel so stressed when we are having problems with the care agency. It takes a v strong person not to crumble."

Marc, the man behind Little Blue Cup Campaign says: "I’m now on a cocktail of medication to stop me from self harming or wanting to kill anyone else. If it wasn’t so serious it would be funny... I now have Fibromyalgia which is a neurological disorder and my pain management consultant is adamant it’s because my ‘brain is knackered’ and it’s all due to my caring role and the stress society has put me under. I always say it’s not the children who’ve made me ill, it’s the social care system I’ve spent the past 18 years battling for my children. I’m currently diagnosed with chronic anxiety, severe depression, Fibromyalgia and Restless Leg Syndrome."

Little Mama Murphy  developed anxiety and had panic attacks: "I was prescribed but never took medication for the anxiety - I think just having it there and having said out loud to my doctor and the people around me that I was struggling helped. At its worst I think it’s a bit like PTSD. As I said to my gp-‘normal’ anxiety and panic attacks are generally classed as an abnormal response to a normal situation whereas mine is a very normal response to an abnormal situation. I don’t think it’s possible to resuscitate your child that many times without being mentally scared. Seeing your child that close to death repeatedly and knowing that it can happen again at any moment massively messes with your head."

Lylas Angels talks about her black dog: "I was diagnosed with severe depression and severe anxiety when Lyla was 18 months old. I was in a very dark place and was not very pleasant to live with. Counselling wasn't very effective for me but anti-depressants changed my life. I accept that they will be a part of my life for a very long time to come and I'm so glad that they are available to me."

Mummy Tries
 said her mental state couldn’t have been better when my eldest was born: "Having overcome a seriously dysfunctional childhood and gone through two mental breakdowns in my 20’s, I did a lot of work on myself to get happy before having kids. My mental state couldn’t have been better when my eldest was born. Now, three kids later and being forced into home educating due to crap schools, I’m on the edge of a breakdown most days."

Not So Ordinary Diary spoke to professionals and says: "As in so much of my life, there was vast chunks of stuff that I didn’t say, and that I wished, as I drove home and cautiously negotiated the traffic in the darkening gloom, I had."

Our Little Escapades says: "I believe it has the whole change to my lifestyle has really knocked my confidence. I had counselling for PND when my second child was born but I don't believe it was that. Emotionally have highs and lows but I deal with it myself. It's the worrying about the future that lowers my mood the most"

Rainbow Dust since having a second child with special educational needs, her anxiety has got worse: "I actually got told I was depressed by one of my swan professionals but my pride gets in the way of asking for help...I just muddle through...hubby on the other hand is the opposite and admitted to his GP he felt depressed etc and is on antidepressants"

Rain Makes the Flowers Grow says she is a mummy on the edge: "I honestly feel traumatised but in true mummy fashion have swallowed my feelings and carried on, no time to sit and dwell. This approach will bite me on the bum one day soon but until then I will pretend all is ok."

Stories About Autism says he never knew what real stress was until I became a parent to two children with autism: "I had periods of real anxiety, depression, and I think I was close to a nervous breakdown at one time. None of this was solely due to being a special needs parent, but the years of sleepless nights, the constant worry, the self-harming, the feelings of just not knowing how to help your child, had a massive knock on effect on other areas of my life. At the same time my businesses suffered, relationships suffered, and it all became too much."

The Soft Thistle 
feels like she's a walking rattle of meds: "Yes, I’ve been diagnosed with depression, anxiety and PTSD due to the violence from my boy. He is much better now but still if I hear a screaming child I feel sick to my stomach and have a panic attack. I’ve also been diagnosed with fibromyalgia  and my doctor is positive it’s due to the constant stress I’m under with taking care of my boy."


Vitally many of my friends are getting help.  Little Mama Murphy talked about 'saying it loud' and talking to her doctor and friends about how she felt she was struggling.  In fact all these people talked to me about their mental health.

In both my instances, falling apart in the car and then again on the kitchen floor it was the same thing that pulled me out.  I picked up the phone and called my mum. I had someone I could talk to and tell them how crap I was and how low I was feeling. And mum didn't need to say anything.  She just listened and loved down the phone.

I'm not afraid to talk to my mum about feeling like this.  And I shouldn't be, I can call her anytime.

It’s easy to think there’s no right place to talk about mental health. But the more we talk about it, the better life is for all of us. Too many people with mental health problems are made to feel isolated, worthless and ashamed. Time to Talk Day is a chance for all of us to be more open about mental health – to talk, to listen, to change lives. 

Just having a conversation about mental health - with a friend, family member or anyone else - can help to break down the silence and shame around the subject.
For more information, visit the Time to Change website.

Some SEN parents have given me tips of how they cope with the stress of parenting.  Along with a chat, why not have a look through their suggestions

6 comments:

  1. I had a big ugly cry down the phone to my mum at the weekend as I was just overwhelmed with it all, and had the flu on top. It made a big difference, but I really wish this was a subject that was more known as so many have no idea how hard a toll it really takes on us as parents.

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    1. Thanks Marylin. I think society creates a lot of pressure in addition to whatever we are carrying and that's not fair either. Feelings are completely normal and if there was less stigma about it all then people may get help if they need it or just be able to cope with how they feel better. Thank goodness I've the blog as therapy too eh.

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  2. Huge lump in my throat and lots of tears in my eyes Ann. Thanks for including me, and big fat hugs to everyone here and all those silently suffering xxx

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  3. I am so emotional since having J and going through the stress of diagnosis and living with autism. I’m so much more tired and drained so i’m not surprised I catch more and i’m Having so many mini break downs once the house is empty or J’s in bed. It’s bloomin’ hard work x

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  4. Having our autistic son has definitely affected my mental health. The lack of sleep has been a big issue during some periods. The worst stresses hasn't been caused by my son though, but by people around him. Having to explain things over and over to people who don't listen or care much anyway, or being promised that he'll be looked after properly and then hearing from other parents etc that the teachers lost him for a little while one day, etc.
    It's good to hear that you have a mum who listens. Mine would just suggest to send our son away for respite. That's not what any of us need... Though right now, we're doing really well, with less stress for both of us. It's quite fragile though, and still very much a work in progress x
    #SpectrumSunday

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  5. You're so right. This is such an important topic and one that is often overlooked as we try to stay strong for our families. A support network is crucial.

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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