The mental health of parent carers

Contributed by Anne Dewhurst

I’ve struggled writing this piece. Not because I haven’t got anything to say; rather, I’ve got far too much to say. And where do I start? So I’ll just blather and hope it makes sense.

In my opinion, parenting a child with additional challenges is not for the faint-hearted. Life can throw us many a curve ball. It can be physically demanding. It can take its toll emotionally too. Sometimes there are prolonged periods of stress, sometimes peaks and troughs.

To help us cope I think it’s very important not to bottle up how we’re feeling and feel able to express our thoughts to people who ‘get it,’ that can be very cathartic.

I came across a couple of studies from the US which focussed on mothers (no mention of dads here, unfortunately) of adolescents and adults with autism, looking into how they experienced chronic stress which was comparable to that of combat soldiers. The mothers experiencing high levels of behavioural challenges from their children had the most pronounced physiological profiles of chronic stress. Whilst my girl, Hannah, has a diagnosis of ASD, she also has a rare condition, which affects her in so many other ways (far too many to mention here that’s for sure). At times, life has been incredibly stressful but joyful too.

Here’s the thing (and I can only speak for myself on this);

The stress I experience isn’t Hannah’s fault (we’ll skip over the time she kicked over a café table FULL of crockery and thought it HILARIOUS when it all smashed. Oh, and the… .*coughs* apologies, I digress).

Rather the episodes which challenge my emotional health have been, and are, varied and come from others or elsewhere.

First off, coping with shattered dreams and aspirations and an initial life changing diagnosis (and many subsequent ones) –when I was led to believe baby was perfectly healthy – took its toll emotionally.

In the early days there were times I cried in the shower. I wasn’t depressed, just stressed, scared and overwhelmed. Quite understandable, given the circumstances! Being sad too, and allowing myself that time, felt the right thing to do. However, talking – but talking to the right people, has been beneficial. Like the rest of the population, we can’t be jolly all of the time, especially when life’s been turned upside down. We ought to be allowed to lick our wounds every now and then, don’t you think?

Then there was the juggling of many appointments whilst trying to protect a little bit of time just to enjoy my baby. I subsequently didn’t know who I was anymore and it took time to find the ‘new me’.

Those little reminders here and there over the years of how life ought to be, but isn’t and never will be, also (still) poke at my heart. However, with time, I’ve learned not to let those feelings fester. The stares. The comments. They’re less annoying these days, but still have a negative effect.

There are behaviours my girl displays that can be stressful – especially when she’s hurting herself. There are times when my heart feels like it’s going to break completely whilst trying to support her through the challenges she faces. There are also times *coughs* when I’m relieved to wave her off on the school bus, just to have a breather for a while (but honestly, name ANY parent who’s not glad to see the back of their kids for a short while…I’ll wait).

Of course, and as you may be aware, parenting a child with extra challenges isn’t just that.

There’s also a plethora of other things that can impact negatively - PTSD, money/ housing/employment issues, lack of support, being hyper vigilant, sleep issues (lack of), loneliness – feeling socially isolated when people just don’t get your life anymore or want to be around your child, etc. etc. and etc.

However, for me, it’s the “battle” that has the potential to have the biggest (negative) impact. And that seems to be a word often used to describe the constant fight to maintain or acquire services and support for our children. It shouldn’t be this way, but it is.

Which ties in nicely with the ever popular ‘Blame Game’ (not a television game show) – when parents, like me, have to jump up and down, and sometimes get a bit shouty, and are subsequently labelled as being “that” mother, the one who is ‘difficult’ and/ or choose your own juicy expletive here!

A major research report published in July 2021, which highlighted the ‘Blame Game’, found that most English children’s services authorities operate a ‘one size fits all’ approach to families (quelle surprise!) The guidance which directs the process for assessment was considered “not fit for purpose…arguably unlawful” within the key messages of this report. You can read the report if you’d like to, here, it’s pretty damning. The sad thing is it needn’t be this way.

No parent ought ever to feel worried about asking for help; they probably have enough to worry about already. However, the report suggests there’s a focus on parental fitness, rather than local authorities stepping up, funding and providing the services children need. Most parents I know want to provide a safe and loving environment. They care, deeply. They want the best for their poppets but It’s probably easier for an organisation to deflect attention when support is lacking, rather than owning up to its failings. Playground tactics, sadly.

It goes without saying that I’d much rather my days weren’t spent chasing and challenging but when you’re navigating broken systems, whilst advocating for a vulnerable child, needs must and all that. Unsurprisingly this cannot fail to take its toll on a parents emotional health.

Stress not only triggers the fight or flight response; it can have a negative physical impact and cause long term health problems. And we can’t be having that, can we?

“You must look after yourself” is one piece of unsolicited advice proffered over the years which makes me want to grit my teeth a bit too much. “I’m trying!” I want to scream into the abyss. However, my usual answer these days is “How? How can I do any better?” Usually there is no answer, or support, forthcoming. Those people mean well, I’m sure. I’ve learned over those years that nobody’s going to come and save me; I am the one responsible for me…and for a poppet who relies on me so much.

So what can be done to improve or maintain good emotional health?

Well, it’s not for me to give advice. I know what works for me, but may not work for others (Mindfulness is smashing though). There are coffee mornings and hand massages, they aren’t really my thing to be honest, but might be for someone else wanting to find their Tribe. And one of those (possibly one-size-fits-all) Local Authority parenting courses wouldn’t have helped me (but may help others).

What I do know is we all need a Tribe – no matter how small; it’s quality not quantity. There are organisations – like Same but Different - that are great sources of support. We need to try and eat…and healthily (healthy gut = healthy mind, although I consider chocolate and crisps medicinal of course). We need to talk - to the right people. We need to carve out a teeny-tiny bit of time for ourselves, sometimes regularly.

We need to acknowledge that NOBODY is ever failing if they ask for help.

On the days that aren’t so sparkly, we need to remind ourselves…

WE. ARE. NOT. ALONE. But if you ever feel that way, reach out; one of us who may be on a similar journey, will catch you.

Find out more

Anne: Anne writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’

She has also written, and co-written books, we’ve included the details below:

Cornelia de Lange Syndrome

– A Shared Journey:

The (little) Book of Broccoli:

Hannah: Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects. For more information visit www.cdlsworld.org which can signpost to the different Foundations.

If based in the UK you can find out more at www.cdls.org.uk

The first International consensus statementtreatment and diagnosis protocol can be viewed here:

Time Away offers families who have a child with a serious, long term health condition, a break in self-catering holiday home accommodation. We have two routes to access our holidays. Our primary offering is for children under the age of 5 (in September) in receipt of higher rate DLA, this is to ensure that we support those children with really challenging health conditions early in their journey. We also offer last minute breaks for children of any age in receipt of higher rate DLA. You can read all about how to apply on our website.

If you could offer any advice to other families on their own rare journeys what would it be?

I’d love to be able to offer some insight, or words of wisdom and advice for a family starting out on a rare journey but much as each child is different, each families’ approach will also be different. I looked up the word ‘journey’ and the actual definition is to travel from one place to another. I think it’s really important to bear that in mind when thinking about your own experience, the place or the person you will be later on your journey will be very different to the person you were at the start of the journey. Although humans might not always like change, we’re actually very good at adapting, over time. Time will see you through to the person and the place that you need to be. So as much as possible try to remain open; to suggestions, opportunities and offers. Be willing to change and embrace it if you can. Listen to yourself. Expect to be sad sometimes and also to feel angry at times, and accept that these are normal emotions that enable us to move along our journey. But, most importantly, try to never let those difficult emotions overwhelm you for too long, and ask for help. We all need help from time to time.

What do you do for yourself?

I don’t really do enough for myself, it’s something that I need to get better at. In some ways starting the charity was part of a process of creating more time for myself and more time for my family.

I’m fortunate to have a strong friendship group so making time to see them is important to me. I’m generally happy to talk about my feelings and I try to make sure I talk about the things I’m struggling with, I think that’s really important. I also believe activity is essential, keeping the body moving, so going for lots of walks or going to the gym - although I really do have to force myself to do it!

Rare Navigator

Help when you need it

At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.

At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.

Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.

Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.

We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

Our support area of North Wales will be expanded for the time-being and if we can't help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:

•Home visits (whenever necessary)

Our support area of North Wales will be expanded for the time-being and if we can’t help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:

•Supporting families to understand the choices of care that may be available

• Home visits (whenever necessary)

• Supporting families to understand the choices of care that may be available

•Helping families to access their local healthcare services

• Helping families to access their local healthcare services

•Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker

• Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker

•Working with schools and teaching staff to provide information to support children in attending and achieving at school

• Working with schools and teaching staff to provide information to support children in attending and achieving at school

For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007

For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007

•Accompanying individuals and families to clinic appointments or meetings.

• Accompanying individuals and families to clinic appointments or meetings.

A NEVER ENDING LOVE www.ocumeluk.org

ACCESSIBLE TRAVEL www.hostariaisidoro.com www.hoteladriano.com www.hotelmartis.com www.nh-hotels.com www.rinaldialquirinale.it www.ristorante-433-roma.com

ADAPTIVE SCHOOL CLOTHING www.asda.com www.marksandspencer.com

ARTS AND CULTURE www.hopearttherapy.co.uk

ASSISTIVE TECHNOLOGY www.acecentre.org.uk

COST OF LIVING

DON’T BE SCARED www.cabourn.com www.drmartens.com www.engineeredgarments.com www.panerai.com www.passenger-clothing.com www.viviennewestwood.com

DRIVING CHANGE www.akusociety.org www.orchardocd.org www.rarebeacon.org

HUMOUR IS OUR MEDICINE www.afkcharity.org www.atwalbricefamily.co.uk www.caudwellchildren.com

RARE NAVIGATOR SERVICE www.samebutdifferentcic.org.uk/ rare-navigator

THE BIRTH OF ISOLATION

THE INSPIRING STORY OF ZAYD www.halliwick.org.uk www.rarbmutation.org

THE MENTAL HEALTH OF PARENT CARERS www.cdls.org.uk www.cdlsworld.org www.cerebra.org.uk www.mykidlovesbroccoli.wordpress. com

WHAT MATTERS MOST www.coastfashion.com www.laurawisinger.com

WHAT WE’RE INTO – REVIEWS www.simplyemma.co.uk

5 QUESTIONS WITH www.timeaway.org.uk www.cdls.org.uk www.cdlsworld.org

Supported www.samebutdifferentcic.org.uk/raritylife www.samebutdifferentcic.org.uk/ cost-of-living SUBSCRIBE www.samebutdifferentcic.org.uk/raritylife