Since 2005, the process of adaptation 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. None of these are professional recommendations but simply a testimony to the fact the Wright family have used and found them usefulness to the Wright family.
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.
Here is a great website, Affinity Hub, which is specifically for parents and carers of children with complex needs
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 could “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.
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.
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.
Is a great resource for finding accommodation with ceiling track hoists.
Is in Portugal and the service provided by the British couple who own the property and live in site includes the use of a wheelchair adapted vehicle, airport transfers and fully adapted accommodation including a wealth of specialist equipment. It isn’t cheap but we found the provision exceptional and worth every penny.
Is worth a look but we have no personal experience.
This is a current favourite. 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. Rachel has blogged about Canvas and campfires here.
Is where dreams come true. Tim and Rachel are founding Trustees and 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!
Sometimes not always directly about disability but just as powerful in processing being the parent of someone with complex needs.
The Frozen Light Podcast
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
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.
Workshops and training
Contact the family, Snap and Bringing us together all have workshops and training for families.