The process of adapting to being a family who loves someone with complex needs has been ongoing – both internally and externally. Along the way a host of things have been helpful from pieces of equipment, books, podcasts, organisations and holidays. Here are some links to things which you may find useful if you walk this beautiful, extraordinary and tricky way too. None of these are professional recommendations but simply a testimony to the fact that the Wright family have used and found them useful.
We could write something here about, “You can’t fill from an empty cup” or “You need to care for the carer (so they can keep on caring).”
But we won’t because your well-being is more important than being able to keep doing your caring role. Self-care should not be founded on you doing more stuff for other people but rather living this one and only life you have – well.
Parents and carers
Here is a great website, Affinity Hub, which is specifically for parents and carers of children with complex needs
Emotional care and wellbeing for people with profound complex needs
NAC (Non-verbal affective care) is a fantastic resource solely for those with complex needs. The ‘how to’ guides you will find on the NAC website are intended to highlight the value of what is so often being done intuitively by family and to provide explicit guidance to those who may be newer to care or education.
The Skies I’m Under
Rachel’s first book is her memoir of becoming the parent of a child with complex needs. You can order the book here and use the coupon code “Mum” to check out with free shipping.
Shattered: God’s view through life’s broken windows
Rachel wrote her second book with her husband Tim (a GP and all round good egg who is slightly obsessed with nature). Ten-years of a fumbling faith in just over a hundred pages can be bought here.
Other helpful books include:
Brackett, Marc (2019) Permission to Feel: Unlocking the Power of Emotions to Help Our Kids, Ourselves, and Our Society Thrive. Celadon Books
Brown, Brené (2015) Daring Greatly. How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead. Penguin Life
Griffin, Joanna (2021) Day by Day Emotional Wellbeing in Parents of Disabled Children Free Associated Press
Nagoski, A & E (2020) Burnout: Solve Your Stress Cycle Vermilion
Peters, Dr Steve (2012) The Chimp Paradox: The Mind Management Programme to Help You Achieve Success, Confidence and Happiness: The Acclaimed Mind Management Programme to Help You Achieve Success, Confidence and Happiness. Vermilion
Wyn, Nia (2007) Blue Sky July: A True Tale of Love, Light and ‘Impossible Odds’. Seren Books
Fledglings is a national charity that finds and sells products that improve the lives of disabled children and their families. We have used them for swim wear, pants, incontinence sheets, wheelchair accessories and neckerchiefs.
When we got our hippocampe through Make a Wish, it felt life changing. Beaches, country lanes and hills were no longer out of bounds. With a bit of effort we have gone to very inaccessible places as a family – and have the photos to prove it!
Other friends use the all-terrain Trekinetic and rave about it.
We used to use the Chailey Swim Float but now we use a run of the mill life jacket and it works a treat. Swimming is one thing everyone enjoys (although it’s exhausting!)
There are many specialist companies out there and Google is my friend for finding what I need at any given time.
Inclusive technology is our first port of call for any technical gadgets. From switch access for his iPod to a wheelchair mount for his iPad and anything in between. Space Kraft and Liberator have both come in handy at times too.
Don’t forget to claim your products as VAT-free using the necessary form.
We started going to the Bobath Centre in 2007. Getting funding is a struggle but their holistic approach to therapy really worked for us. It isn’t a miracle treatment but it has been fundamental in us helping communicate and engage. We wouldn’t be where we are today in terms of communication, lack of physical complications, toileting and positive play experiences together, if it wasn’t for Bobath.
Simple Stuff Works
Born at the Right Time got its passion for postural care through Simple Stuff works. Collaboratively we have produced training for practitioners, the workforce and family as we both believe those providing hands on care are at the centre of excellence in postural care.
Holidays: where the tricky becomes even harder!
It isn’t the tag-line you see on travel agents but Rachel has blogged about the complexity of holidays here and from the comments we know she isn’t alone.
Here are some of the holidays destinations and agents worth trying which might make your trip more like a holiday.
Ceiling hoist user community
Is a great resource for finding accommodation with ceiling track hoists.
Is worth a look but we have no personal experience.
La Haute Boucherie
In France we spent a week at La Haute Boucherie. There isn’t a wet room but ground floor bedroom with hoist and bath (in the bedroom). The hoist over the massive hot tub is a total win.
Canvas and campfires
This is a current favourite in Wales. So you are only being told about their wonderful personal service if you promise not to book all the luxurious glamping tents with wet rooms.
Cam Jojo is where dreams come true. Tim and Rachel Wright were part of the Camp Jojo founding team. It has their fingerprints all over it as they put their heart and hard work into making truly accessible camping holidays for families like theirs. Camp Jojo has all the practical, equipment and lived experience needed to make this a weekend for the whole family – even the primary care givers!
Mum on a Mission
Special needs Jungle
Downs side up
Sometimes not always directly about disability but just as powerful in processing being the parent of someone with complex needs.
The Frozen Light Podcast
Episode 4 – Interview with Rachel Wright, Born at the Right Time
We can do hard things with Glennon Doyle
Especially episode 4 on Fun, 6 on overwhelm and 8 on Self-care
Unlocking Us with Brené Brown
Brené with Emily and Amelia Nagoski on Burnout and How to Complete the Stress Cycle
Dr. Marc Brackett and Brené on “Permission to Feel”
Brené on Comparative Suffering, the 50/50 Myth, and Settling the Ball
David Kessler and Brené on Grief and Finding Meaning
Brené with Aiko Bethea on Inclusivity at Work: The Heart of Hard Conversations
Everything Happens with Kate Bowler
Leaning into uncertainty with Adam Grant
and many, many more.
For those in the US, CerebralPalsyguidance.com is a website brimming with information and facts about Cerebral Palsy. It is a comprehensive informational website on cerebral palsy. Their mission is to provide quality cerebral palsy information and assistance to families in need, including information on cerebral palsy symptoms, financial assistance and daily living articles.
In the UK, there are new NICE guidelines about how children with Cerebral Palsy should be cared for with national charities like Scope and Cerebra being a great source of info and support.
Workshops and training
Contact a family, Snap, Care for the family and Bringing us together all have workshops, resources and training for families.