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My Unique Child

If you are reading this I am guessing you are either a parent of a special needs child, you know someone who is or you are interested in my journey and experiences. This is not a forum for me to give professional advice - I am no expert. I am simply a mum trying to do my very best with the cards that have been dealt to me.

I will post links to sites that can give you professional advice and I will post articles on specific subjects occasionally. But in general I will just share my thoughts and the lessons I have learnt and am still learning on my journey. This special needs parenting lark is hard - and if I can make you feel in any way that you are not alone, or if I can give you ideas or strategies for dealing with issues more effectively then I have succeeded in my goal.

You have a very privileged role as a special-needs parent. You are your child's advocate. If you don't fight for him, who will? If you don't speak up or him, who will? If you don't cherish him, nurture him and love him - who will? It's no coincidence that you and your child are doing life together... you are the best person for the job of looking after him - no one else has the unique blend of personality, patience and skills that fit your child's needs quite like you do.

It's not an easy road; it has many twists and turns; ups and downs - but you will experience moments of pure joy on that journey. As you travel down the road of special needs parenting you will go through storms and get stuck in pot holes but you will also experience rainbows, pick wild flowers and see stunning sunsets. Only a select few parents are asked to go on this journey - what a privilege. So strap up, hold on tight, surround yourself with good friends and skilled professionals, take a big breath and lets go.

8

I Cried Today

I cried today. As my first born made his miraculous entrance into my life and gasped his first breath. My heart was overwhelmed with a protective love and I marvelled at his perfection.

I cried today. When the loneliness of being a new mum became my reality. When my everyday became a monotonous turnover of feeds, sleeps and nappies. When the incessant and inconsolable cries of my baby became my new normality.

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2

Is Christ another name for Santa?

In our family we take Christmas pretty seriously. I mean apart from the fact that I get lots of new clothes and handbags, it is the celebration of the birthday of this guy Jesus who is central to our faith.

Inspired by the question of a fellow tweeting mummy (@theboyandme) about how to explain Christmas to a toddler, I thought I’d ask Ben his thoughts to see how well I have done over the last 5 years…

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2

I Am Special

My name is Ben and I am five. Mummy says that I have a very special brain and that is why we were allowed to go on all the rides at Legoland without queuing. I think that I am all special, not just my brain. I have special eyes and ears and hair and even a special bottom that is extra good at trumping and that is why everybody loves me.

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1

Don't Miss The Miracles

After a particularly hard morning I managed to get Ben off to school, and decided to get some much needed coffee therapy at our local shopping centre. I parked up, got Fin into his pushchair and as I walked past the little play area in the car park I noticed a crying child sat on the bench. There were three other mums with their children in that park who were clearly not with him, but acting like they hadn't even seen him. After looking round to see if any of the countless adults walking past that park could be his parents I went in to him to see what the problem was. He must have been around 4 years old and he was sobbing his little heart out.

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5

Disabled? Me? Take a look at yourself!

Apparently my child is disabled. There are some days when I think about this 'diagnosis' and I laugh at how utterly absurd it sounds. How can my gorgeous, unique, loving, normal looking little boy be classed as disabled?

There are other days when I am so utterly drained by the end of the day that I draw some kind of relief that he is 'disabled'. Somehow it makes me feel slightly better. I am not just a failing mum, incapable of keeping my child under control, unable to command any level of respect and an utter failure at protecting my toddler or kids at the playcentre from his impulsive shoving or poking.

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3

Today

Today when you come into my room at 5.30am I won't grunt and turn over instead I'll welcome you with a smile and a cuddle

Today I will make your favourite breakfast and let you eat as little or as much as you want

Today I won't get uptight when you run around the house when I am trying to get you dressed; I will run round with you

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