Bringing up children is challenging at the best of times, but there are often extra challenges and worries if you have a child or young person with additional needs. So how do you look after yourself? We’ve been guided by nine parent carers who answered the question – Alastair, Bev, Christine, Elena, Jacquie, Laura, Leticia, Louise and Ruyiya – and there are some pointers too from the Compass Team at Amaze.
Talking to people who ‘get it’
Talking to someone who knows how you’re feeling is important. You might have a friend or relative you can call or meet up with, or you may benefit from a local parent group.
“Every month or so I’ll have a long, large, profuse rant whilst with my friend(s), so I don’t bottle up my frustrations”, says Laura.
“I have a great circle of friends who are willing to listen about troubles I might be having or about my son with Special Needs. They are a great support”, says Jacquie.
There are lots of parent groups in Brighton and Hove and West Sussex and hopefully you’ll find one where you feel you’re all more or less singing from the same hymn sheet. Many people form long lasting friendships through these groups, so they’re well worth exploring.
No less than four of our nine parent carers mentioned an autism-focused group in Brighton facilitated by Catherine Newell, who’s mum to a teenager with autism. It’s a great example of how the right group, at the right time, can make all the difference.
“The group helped me through a difficult transition. To have other parents, at different stages, telling the truth about how things really are is such a tonic to the battle weary. No judgements just support, warm feedback and others’ insights told from the heart. A life raft I would call it and a bonding experience for those in desperate need at times”, says Christine.
Louise adds her voice: “I have sometimes arrived at these sessions feeling highly stressed after the day’s dramas and events and have left feeling so refreshed and lifted and definitely in a stronger position to cope with anything.”
Catherine’s support group is free to parents at Downs View school in Brighton and there are also paid-for sessions available. The current five week paid course has already begun, but if you want to find out about future sessions, call Catherine on 07968 353 174, email firstname.lastname@example.org or message her on Facebook (Catherine Newell and Autism).
In Brighton and Hove, you’ll find a full list of parent groups on the Amaze website here www.amazebrighton.org.uk/services-and-support/parent-support-groups/ You can also find info on Face 2 Face Befriending, Amaze’s peer support service for parents in Brighton and Hove who need extra support during diagnosis or periods of extra challenge.
In West Sussex, there’s a full list on the West Sussex Parent Carer Forum website here www.wspcf.org.uk/information/#support
And now breathe…
Meditation, yoga, mindfulness, complementary therapies and art can all come in useful when you’re trying to look after yourself.
“I meditate as much as I can and am quite tough with prioritising it over other stuff, balancing it with the utter exhaustion of parenting a disabled child”, says Bev.
“I have tried a mindfulness course for parent carers. It really helped me. I hope to be able to do another course when I have a bit of time…”, says Jacquie.
“My lifeline at times of major stress has been to seek things like a meditation group at the Buddhist Centre [Brighton] … Meditation helps to slow the thinking down and shut the chattering monkeys up.”, says Christine.
“Yoga – following a teacher in a Youtube video. Reiki self-treatment. Meditation”, says Alastair, while Elena mentions yoga, spiritual groups and meditation.
If you’re looking for affordable complementary therapies, why not start with a local college where students are looking for people to practice on? If you’re nervous about having a treatment from a beginner, you can usually request a final year student, but bear in mind everyone’s fully supervised by experienced professionals.
Brighton Metropolitan College (formerly City College) runs a hair, beauty and complementary therapy salon, City Revival. Prices are low and there’s a further discount with the *Carers’ Card in Brighton and Hove. Call 01273 667790 (beauty and complementary therapies) or 01273 667736 (hair).
In West Sussex, there’s the salon at Crawley College (formerly called Intuition Hair and Beauty). Beauty therapies are currently on hold (should be available again soon), but you can book affordable hair treatments and complementary therapies here. Call 01293 442252.
You can also find community organisations that provide competitively-priced complementary therapies. *Carers’ Card holders in Brighton and Hove should also check out the offers on the card. In Brighton and Hove, you could check out Pathways to Health’s ear acupuncture sessions, which are said to help reduce stress and anxiety. Treatments cost between £5 and £15, depending on your income. Find out more at www.pathwaystohealth.org.uk
In West Sussex, it’s well worth getting in touch with Carers Support. Staff there can provide you with vouchers so you can enjoy a free initial treatment. Call 0300 028 8888 for more info, or visit the Carers Support website at www.carerssupport.org.uk If you care for a young person over 18, try the Carers Health Team in West Sussex too (01243 623521).
If creating art or writing is your thing, Creative Futures may be able to help. The charity, which supports marginalised artists including carers, runs art drop-ins and art workshops in Brighton and Crawley. Visit www.creativefuture.org.uk to find out more.
A little exercise goes a very long way
Exercise is good for you – and not just for your body, but for your mind too, so it’s no wonder doctors prescribe it. Lots of the parent carers in this blog try to include some form of exercise in their lives.
“I started exercising to get trim, but I didn’t realise the mental health benefits. I do lots of exercise. It takes me to a different plane and helps me to put things in context. It’s the best anti-depressant ever”, says Ruhiya.
Leticia also swears by regular exercise. “Exercising is how I look after myself. I can’t do it as often as I would like, but try to exercise twice a week. Sometimes – more often than not – I can’t make it to the gym so I exercise at home when my daughter sleeps!”
“I take part in parkrun, the free 5km run for anyone, whatever your fitness level. I go every Saturday at 9am. It’s a great start to the weekend. I go to Preston Park [Brighton] as it is a great friendly atmosphere there and everyone is encouraging. I started as a walker and now I run and really enjoy it. It’s a great de-stresser and gets you fit at the same time”, says Jacquie.
Even if you’ve never run before, parkrun is a great way to start. There are parkruns in Brighton, Hove, Worthing, Haywards Heath, Horsham, Crawley, Chichester and Bognor Regis. They’re open to all, free, and safe and easy to take part in. To find out about a parkrun near you, visit www.parkrun.org.uk/events/events/ The Preston Park parkrun in Brighton also includes a 2k junior parkrun for 4 to 14 year olds if you want to take the kids along (see junior parkrun events on the website). If you haven’t done parkrun before, don’t forget you have to do a one-off online registration before you turn up – visit www.parkrun.org.uk/register/
If you’re not up for running, walking is great for your health too. Brighton & Hove Council runs a full programme of Healthwalks for all levels, including mindfulness walks. Find out more here – www.brighton-hove.gov.uk/content/leisure-and-libraries/sports-and-activity/healthwalks-programme In West Sussex, Mid Sussex Park Rangers run a free programme of Healthy Walks for all levels – visit www.midsussex.gov.uk/healthywalks If you want to check out other walks, the Walking for Health website covers the whole country – www.walkingforhealth.org.uk
If you’re an exercise newbie, it may be worth a visit to your GP and mentioning ‘exercise on prescription’. Depending on your circumstances, the scheme can give you opportunities to access local low cost or free exercise programmes. Adur & Worthing Wellbeing Hub for example provides low cost exercise programmes for people on a low income who’ve been referred by their GP.
For help to pay for exercise, or other things that could improve your health and wellbeing, you could also consider applying for a ‘Parent Carer Grant’ (also known as the Carer Wellbeing Fund) in West Sussex. The scheme is run by West Sussex Parent Carer Forum in partnership with Carers Support. You’ll find an application form here www.wspcf.org.uk/what-we-do/#pcg or you can call 01903 726188 or email email@example.com for more information.
When you need one-to-one support
Counselling can be invaluable when you need to talk to an experienced person outside your own circle who’s there specifically to hear you out.
Although there’s currently a six month wait, there’s free counselling for parents of children and young people with complex needs and learning disabilities in Brighton and Hove, but you’ll need to have been seen by a Seaside View professional in the last two years to be eligible. Run by the Learning Disabilities CAMHS Team, there are an initial 12 sessions. Call counsellor Jane Steeples to arrange an initial assessment on 01273 265787 (Monday mornings and Wednesdays) or email SC-Tr.BGHfirstname.lastname@example.org
Relate is providing a limited number of eight free counselling sessions to carers in Brighton, East Grinstead and Crawley. You need to be referred to be eligible for the service by one of four organisations: Brighton Carers Centre (01273 746222), Amaze (01273 772289), the Association of Carers in East Sussex (0300 330 9498) or Carers Support West Sussex (0300 028 8888). Each of the four organisations can make one referral a month and the counselling will need to be related to your role as a parent carer.
Carers Support West Sussex also provides a counselling service for carers with up to 12 free sessions with a specialist counsellor at a range of venues across the county. Visit www.carerssupport.org.uk/getting-help/someone-to-talk-to for more info. You can also ask for a regular monthly call from a friendly voice at Carers Support; this isn’t counselling, but it’s a way of talking to someone who can offer an independent voice and point you in the direction of services that might be useful to you.
You can find more counselling options in Brighton and Hove on the Amaze website here (under ‘support for depression’) www.amazebrighton.org.uk/advice-for-parents/survival-strategies/support-from-professionals/
Your GP should also be able to suggest free counselling options, but there may be a wait before you get seen by a counsellor.
We know time is short and it’s often impossible to squeeze proper me-time into a busy day, but that’s where the small things kick in – and they’re just as important as the rest. Find a simple pleasure of your own and make a habit of it!
“I make (and then drink!) a strong tasty freshly ground coffee every morning to give myself something to look forward to no matter how tired I feel when I wake up”, says Laura.
“I listen to music in the car, especially when I’m in the car on my own, where I can turn it up really loud and sing along”, says Jacquie.
“[I] start the day with a delicious healthy Nutribullet full of fruit and veg”, says Alastair.
“I eat my favourite meal with a glass of wine to celebrate my continued efforts to be the best mum I can be”, says Laura.
* If your child has Compass Card Brighton and Hove, you’ll automatically qualify for the Carers’ Card in Brighton and Hove. The card, with its dozens of discounted offers, is designed to help you look after your own health and wellbeing. You can now apply online at www.brighton-hove.gov.uk/carers-card Alternatively, if you don’t have access to the internet, you can contact the Integrated Child Development & Disability Team on 01273 295153 if your child is under 18, or the Adult Social Care Access Point on 01273 295555 if your child is over 18. For more information about the Carers’ Card in Brighton and Hove, see www.compasscard.org.uk/compass-card-offers/carers-card-gullys-days-out