Useful Resources

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.

Parent/carer well-being

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

Equipment

Fledglings now part of Contact 

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.

Hippocampe 

Beaches, hills and country paths are now passable and possible

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.

Therapeutic care

Bobath Centre

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

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.

Accessible Holidays

Ceiling hoist user community

Is a great resource for finding accommodation with ceiling track hoists.

Tregooselet

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.

Centre Algarve

Is worth a look but we have no personal experience.

Canvas and campfires

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.

Camp Jojo

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!

Information

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 the family, Snap and Bringing us together all have workshops and training for families.

But of course Born at the Right Time training and workshops which you can find here.