Useful Resources 2017-10-11T14:40:19+00:00

Useful Resources

Over the last decade, we have come across various equipment, organisations and professionals. Some have been helpful, others less so. Here are some links to stuff we have found useful. None of these are professional recommendations but simply a testimony to their usefulness to us as a family.

The Skies I’m Under

If you would like to purchase my memoir, The Skies I’m Under, please use the coupon could “Mum” to check out with free shipping.

Equipment

Fledglings

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 – All Terrain Wheelchair

Beaches, hills and country paths are now passable and possible

When we got our hippocampe through Make a Wish, it felt life changing. No longer were beaches, country lanes and hills 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. Don’t forget to claim your products as VAT-free using the necessary form. Space Kraft and Liberator have both come in handy at times too.

 

 

Therapy

Bobath Centre

We started going to the Bobath Centre in 2007. Getting funding is a struggle but their holistic approach to therapy really works 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.

Holidays

P1020037

View from the Accommodation

We have been to Portugal as a family twice. The holiday accommodation with Tregooselet is like nothing else we have come across. 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.

We haven’t been but Centre Algarve might be worth a look too.

Charities/agencies

Carers UK

Make a Wish

Scope

Well Child

Cerebra

Mencap

Wipe away those tears

Together for Short Lives

Firefly

New Life

The Music Man Project

Mummies of Miracles

Care for the Family

SNAP

Hadley’s Heroes

CP Family Network


Other Blogs

Mum on a Mission

Special needs Jungle

Downs side up

The Mighty

 

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.