Autism Awareness Month - April 2012

April is Autism Awareness month.  Amongst friends and family it is something very close to home but not something I choose to talk about publicly very often.  I am not ashamed or embarrassed that Autism and related conditions affect my family, but it is personal and as it affects a child I would feel uncomfortable divulging to the world in depth details that may make things even more difficult as they make their way in life.  This is my personal choice, however I wanted to mark Autism Awareness month by highlighting the difficulties faced by families. 


It is important to spread the word and raise awareness and understanding to help make society more inclusive.  Autism affects around 1 in 100 people in the United Kingdom alone and around one third  of these people and their families are left without adequate support.

It is difficult to explain to people who have little or no experience of the condition but I was given this to read by a close friend and it explains the emotions and difficulties perfectly.  

Welcome to Holland - Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....

When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum, the Michaelangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland".

"Holland?!" you say, "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy.  All my life I've dreamed of going to Italy".

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy a new guidebook.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, "Yes, that's where I was supposed to go.  That's what I had planned".

The pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Facing up...

"I believe in being strong
when everything seems to be going wrong.
I believe that tomorrow is another day, and I
believe in miracles."
~Audrey Hepburn

When faced with a crisis or a life changing decision, it is often the time when you find out what people are really made of.  Unfortunately, at times you wish that you had not been faced with this reality and that you could carry on oblivious as before.  But sometimes you just have to face the fact that to do this would be a massive injustice to yourself and that you would be setting yourself up for further falls and a lifetime of unhappiness.

This month has been such a time, decisions and responsibilities have been placed upon me which I should not have to deal with alone.  However, after spending a few weeks contemplating the complexity of the situation, the emotional roller-coaster of somebody not coming through for me when I was certain they  would and the huge importance of the decision left to make; it is now time to get some clarity, accept the situation and what I cannot change and move on.  Anger and bitterness will not do me any good, as Buddha said:

"Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned."

In order to be able to do this however I've had to realise and accept:

• that not all people are the same.  Some will never be responsible or strong enough to deal with a 'fight or flight' situation.  Some people are just not built to fight.
• you cannot change someone's behaviour or attitude.  No matter how much you want to or try to help, unless they want this change for themselves it will never happen.
• this is not my fault! I am not responsible for other people's paths in life, only my own.
• sometimes you have to accept your own limitations.  Nobody can cope all the time on their own.
• sometimes the strongest thing you can do in these situations is not the easiest. It may cause you pain, tears and haunt you for a long time.  However, it is not a failure to accept that in some circumstances, as much as you would like things to be different, your current responsibilities are too great to take on any more.  

“Remember, if you ever need a helping hand, it's at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others.”  

 ~ Audrey Hepburn

As the great Audrey Hepburn said, you do indeed have two hands but to be able to help others you must first be well and strong enough to look after yourself.  People are often much stronger than they give themselves credit for, I have certainly dealt with a lot more than would seem possible if I had actually sat down and thought about it at the time.  However, there comes a point when enough is enough and you have to take that first hand to help yourself before helping others.  You never know it may well be the wake up call that they need. 

Ultimately we can only do our best at any particular time.  If we can look inside ourselves and know that we have done all that we can and have no more left to give then surely this is our best? Other people may see this as a sign of our weakness, but in fact it is probably the bravest thing that we can do, however painful it may be.  

"We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel that you are on the right path, but it's another to think that yours is the only path." ~Paulo Coehlo 

'Book of Happiness'

I was looking at my daughter's baby photographs the other night and it saddened me how long ago it seemed that they were taken yet had quickly she had grown up.  The reality then hit me that 2012 would see her 10th birthday. Yes, my little girl is going to be in double figures!  It upsets me that her childhood is slipping away and that we will never get that time back, yet when I look back it is all to easy to remember the numerous difficulties we have faced and continue to come across.  Being a mum to a child with additional needs certainly provides lots of these moments and can be a very scary and isolating place, it is all to easy to get caught up in the despair and anxiety of it all without looking back and appreciating the positives and fun times.

I wanted something that I can pick up and look at when times are hard or distressing and that will remind us of the good and happy times that we have amongst the rough.  Whilst looking through other blogs on here I came across Hanna's Verden where Hanna had documented her time in London with beautiful scrap books of her children and family holidays.  I am not sure if I could ever make anything as beautiful to live up to them, but I loved the idea.  I showed my daughter who also loved the idea (I thought she would as she loves anything to do with craft!), so this year we will be working together to create a scrap book of all our positive and happy moments! I think it will be called 'Our Book of Happiness' .

2012 is going to be a struggle both financially and with a fight to get my daughter the help and understanding that she needs and deserves.  However, I also think that it could be an amazing year. She has already thought of lots of things that could be included in the book: moving house, the Olympics, her 10th birthday and our family holiday to Florida.  I however, have to admit that I am looking forward to recording the little things I love about her: her imagination and beautiful smile and laughing with her friends, growing flowers and vegetables in our new garden and playing with her pets.

As in my earlier post, I want this year to be about 'going back to basics' and enjoying the simpler things in life.  This will mean tightening our belts financially although I am looking forward to a book full of happy memories to look back on by the end of the year. 

A x 

Back to work!

Although a bank holiday the museum (The Cardiff Story) was open as normal today therefore I was back to work.  Today however, the museum had a new facilitator for the morning as I took my nine year old daughter in with me! She loves coming to the museum (as do most children who visit here, very 'hands on' and interactive with lots of dressing up!) and probably knows the galleries just as well as me!   

She was eager to help any visitors who came in but was a quiet morning so ever the historian I was eager to take the opportunity to teach her something while she was there with me! She came across some ration books in one of the interactive evidence drawers in the  Cardiff's War section of the gallery so I set about teaching her about rationing and nutrition during the Second World War. Luckily she is eager to learn and with the help of the Horrible Histories book we went through the timeline of events and then looked at some local books of Cardiff during the war.  She was fascinated with the ration books as they are original and "very old" and was amused to find out that these "very old" books were dated the same year as Grandad was born, which created giggles a plenty! (sorry Dad!).  It was lovely to be able to show her photographs of places in Cardiff that she knows from during the war and to teach her about the experiences of children in Cardiff during the 1940s.

She then went off to 'work' in the Tourist Information office that shares our building, sticking address labels on envelopes, gossiping and being paid in cups of tea and chocolate!! What started off as a potentially stressful day turned out to be very enjoyable!!

The Cardiff Story Museum

http://www.cardiffstory.com/