The Importance of Respite and True Friends

It's very easy to say...

I need some respite, a bit of time off, a break, a change, a rest...

We all have very different lives.  

Some of us work, some seek work, others choose to stay at home with young children. Very few parents of children with additional needs can afford extra help, some rely on nearby family to lend a hand. Some of us are lone parents, some lonely within relationships, others are fortunate to find themselves within supportive partnerships, team-tagging their way through the special needs jungle.

But what we all have in common, as parents of children with a disability, is that we need time out in order to recoup our energy levels and enthusiasm. We need regular pitstops in order to be better parents and carers. 

All unpaid carers know we need to nurture ourselves, but time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it. Read why it is vital do press the pause button once in a while and have a look at our tips for doing so, in this post created in collaboration with Basubu Yoga Retreats, who know a thing or two about restoring the senses.

Being a special needs parent can be wonderful and exhausting in equal measure

School Camp for Children with Special Needs: Our Top Ten Tips

Last week one event made me more highly strung than a Wimbledon player's racket, and when it was all over, the headache, light sensitivity, strange metallic taste and exhaustion of a migraine befell me.

What on earth had made me so stressed? School report? Annual review? Meltdown in the supermarket?

No....   Natty's first school camp! 

Here are my top ten tips to avoid that headache when it's your child's turn.

Natty, who has Down's syndrome, returns happy from her Summer camp

Warrior Mums by Michelle Daly

I am very proud to feature alongside many inspirational disability advocates and campaigners in new book Warrior Mums.

A few months ago I met a truly inspirational lady, Michelle Daly via Twitter. In  nutshell, Michelle was the youngest person ever to become the legal guardian of someone with a disability in this country back in the 70s, and she has written an incredible story about her journey with Marie in her must-own book With a Little Help From My Friends.

Our Kids Don't Like Each Other... and that's just fine

This post was written by Sarah on her blog Things Mummy Thinks after her youngest daughter met with a little girl who has Down's syndrome and they didn't get along. I love this post, it's about how kids just take disability in their stride, and if that means not making special allowances, then so be it. 

It really is OK for children not to get along, whatever their needs and parents shouldn't worry.

What's on your bedside table?

What are you reading, trying to read, promising to read or wanting to re-read with eyes afresh?

What are you dipping into from time to time, or are so engrossed in you can't put it down?

Are you a Kindle or a paperback person?

Here's what's piled up on my bedside table, my Downs Side Up reading list if you like...

A Minor Adjustment - Andy Merriman
A book that changed my thinking on parenting a child with Down's syndrome when Natty was a baby. Humour and tears all roll into one. Read my interview with Andy here. I now want to read the book again, 7 years on, to see if my thinking has shifted.

Mongol - Uuganaa Ramsay
A book that paints a beautiful picture of life in Mongolia, and more crucially challenges our thinking of the word Mongol, and how it came to be used as an insult. You can purchase from Uuganaa's website Mongol Memoires.

Wonder - R J Palacio
The award-winning story of the world through the eyes of a young man with a facial disfigurement.

Sworn Secret - Amanda Jennings
I first met Amanda on a beautiful beach many miles from here... she is now a Twitter friend and very generous supporter of Down's syndrome charities. Her debut novel has been a smash hit! Give it a whirl, it's my treat when I want to escape all things SEN.

Standing Up For James - Jane Raca
Jane is another amazing woman. We met at a Mencap reception at No.10 (like you do). A campaigner, legal expert and author, writing about her fight for her son James who suffered brain damage at birth. Visit her site Standing Up for James here.

With a Little Help from my Friends - Michelle Daly
Michelle began helping to care for Marie, a 5 year old with complex disabilities when she was but a teenager herself. She went on to become the UK's youngest single woman to obtain legal guardianship. This is their incredible tale. Visit Michelle's inspiring blog Warrior Mums here.

All About US! - Brian Rix
Thank you Lloyd for sending me this fascinating history of learning disability and the origins of Mencap.

Pop over to our Pinterest board for more inspiration for 

Down's syndrome and special needs books. 

Readers' Stories - Andie Barker

Andie Barker sent in this poem she wrote in the early days after her daughter Hope was born. It is honest and full of love. It will bring a lump to the throat of even the hardest hearted.

Hope: Pretty in Pink

• I think she has downs I heard them say
  No my head screamed, oh god no way
  They passed her to me, I didn't look
  They put her to breast she started to suck,
  But something was wrong, 
  As a mum I knew
  Her hands feet and body were turning blue,
  
  
  Get the doctor I heard them call
  As the walls of my mind began to fall,
  I couldn't do this they must have it wrong
  Where was my princess I wanted so long,
  The doctors came with a look in their eye
  As they took her away, I was scared she
  would die
  
  
  Then it hit me like boom in my brain
  Pull yourself together you're a new mum again
  Fighting for her life among wires and things,
  Machines making noise ping ping ping
  She has to pull through, she has to stay strong,
  She's my flesh and blood, don't make me wrong
  
  
  Sink or swim my time was here 

  and now,
  Decisions I made would alter everything somehow
  For two whole minutes I had doubted me,
  Now I'm the proudest mum for the world to see
  Nobody wishes for a child with special needs But we get what we get, when we sow the seeds
  
  
  Babies don't chose to be born this way
  It's nobody's fault, believe in what they say
  So things will be different, things will be new
  But your new baby waits for nobody but you
  We named you Hope when we knew you were a gal
  A name you have lived up to it fits you so well
  
  
  You're not the end of the world as they led me to think
  
  
  You're our gorgeous daughter all cute wearing pink .