I’m on the T.V

So a few weeks ago I blogged about my youngest daughter winning the Mayor Civic award  due to this amazing achievement Brodie and I were asked into our local tv station to share more about the award and Livvy.

Take a look at our interview here.

Be kind, I love to talk and Brodie bless her got stage fright.

 

 

If you want to learn more about Livvy’s Smile check out our website Livvy’s Smile and if you are interested in joining us to celebrate Livvy’s 16th Check out the facebook event here…

The crazy bunch of people I love.

So after I  had published my countdown post to Special Kids in the UK I found myself re-reading it from the perspective of someone who didn’t know the people I was writing about.

 

I wondered if I had given you the impression of a camp that was about disability and only disability.

 

Now after spending a crazy wonderful week there I want more than anything to give you a little more insight into who we really are.

 

Yes Special Kids is a charity which was formed by parents with children with disabilities for the use and support of other parents in the same situation.

 

It is true that this is the life we live, but it isn’t all we are.

 

We are fun crazy people that have somehow found ourselves in the world of disability.

 

Yet we aren’t just parents and carers of children of disabilities and our children are far more than just syndromes and conditions.

 

We are a diverse group of people.

 

From wine drinkers to tee-totals.

 

Drag queens to doctors.

 

We are sporty, creative, energetic,caring, imaginative and eccentric.

 

We have parents with full time careers and we have stay at home parents (a full time job in it’s own right.)

 

We are each unique and that’s why it works.

 

We are different but united.

 

Please don’t imagine this camp as a group of people sitting around a camp fire full of woe me for life.

 

You will find us sitting around that said fire laughing at the antics of our young adults, roasting marshmallows chatting into the small hours.

 

You will find us dressing up in weird and wonderful ways, wheelchairs transforming into race cars and families transforming back into the stone ages.

speshfest 2014(2)

Sharing life with others that understand that really get it.

 

Life is about living and the people that I camp with understand that more than most.

 

Special kids in the UK camp is about support and compassion but mostly it’s about friendship and laughter.

 

I am so blessed that I get to call this crazy bunch of people my friends.

speshfest 2014

 

So thankful that one day about 9 years ago i came across Special Kids in the UK.

 

I love these guys xxx

 

*Credit for the photographs go to members of Special kids xxx

 

My A-Z of Special Kids in the UK camp.

The last few days I have been having a fantastic time at Special Kids In the UK camp.

I wasn’t sure how to describe my time away until I wandered past a group of campers playing the A-Z game in a rather unique way.

So here is my time at camp from A-Z.

 

A – Amazing

B –  Beer o’clock

C –  Caring

D –  Drag queens

E-  Enjoyment

F-  Friendship

G –  Games

H-  Hugs

I-  Informative

J-  Jumping

K-  Karaoke

L- Livvy & Lucy- Mai

M-  Memories

N- New friends

O-Old friends

P- Pig roast

Q- Quality

R- Restore

S- Special

T- Tea tent

U- Ugly bug ball

V- Volunteers

W- Wobbly walkers

X- X-citing

Y- Young & old

Z-zzzzzzzzzzzzz

 

Is it my fault my child is disabled?

When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.

 

I blamed myself for such a long time as I knew how important those first days of bonding were.

 

When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.

 

I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child

who wouldn’t even look at you.

 

The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.

 

I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.

 

I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.

 

I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.

 

In the end I retreated, my own world was safer.

 

Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.

 

The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.

 

Was this my fault again?

 

Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome.  A week later the neurologist confirmed it.

 

I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.

 

I couldn’t have caused it.

 

Something inside of me changed right then as I read the research into the condition.

 

“Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old. ”

 

See I wasn’t wrong.

 

This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.

 

It wasn’t my fault,

 

This realisation gave me the courage to break the chain of lies that were in my head.

 

No more.

 

I was determined to do as I had been.  Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.

 

The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.

 

It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.

 

Yet somehow the comments from people and professionals had cast doubt in my mind.

 

Was it my fault that my daughter was disabled?

 

No it blooming was not.

 

It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.

 

I couldn’t be responsible for that.

 

This knowledge set me free and the fear dispersed.

 

I was then able to live life for the gift it was.

 

Livvy emerged slowly from her own world and her mischievous spirit started to show.

 

My other daughters just grew and bloomed.

 

Life was good.

 

Then in 2008 we lost my beautiful girl.

 

As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”

 

Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.

 

There was nothing I or anyone could have done.

 

One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.

 

Maybe it’s ignorance maybe at times it is spite.

 

I can only be responsible for my own mind and my own thoughts.

 

I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.

 

 

I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.

 

Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.

 

If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.

 

I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.

 

The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.

 

Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.

 

Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.

 

But with the right help, support and friendship your life can and will be a good one.

 

My life is so different because I got to be Olivia’s mom and for that I am truly grateful.

wonderful gift

 

 

 

 

It’s countdown time.

So the official countdown for Special Kids In the UK camp has started.

 

Though for many it began the moment we pulled away last year.

 

How and why is this camp so important?

 

So special to the members of this charity?

 

Well to be honest its pretty simple.

 

For the most part we live our lives on the outside.

 

Exclusion is not only for our children but us the parents and families too.

 

In an ideal world I would be writing about inclusion and community but when your lives consists of endless hospital visits, medications, physio, adaptions, assessments and so much more.

The conversations are rather different to many around you.

 

 Life is so very different. 

 

This is why this camp means so much.

 

For a week each year we are inclusive.

 

We all understand.

 

We live on the inside of our own special world.

 

I am so excited for this years camp.

 

I can’t wait to relax in a place where I know people get it.

 

Where friends have become family.

 

I may not know everyone’s name but I know they understand my life.

special kids 2

 

I love the fact that this time next week we will be laughing around  the communal  BBQ.

 

Watching the men become BBQ kings.

You have never had a sausage until you have a Special kids in the UK sausage.

Yes i really wrote that ha ha.

 

Kids will be dancing in wheelchairs and jumping on bouncy castles.

 

There will be wheelchair races with screams of go faster.

 

Wobbly walkers and fun running battles where often the older show the younger how its done.

 

There will be tea parties with strawberries and cream, cakes and more cakes.

 

Dvd nights and wine fuelled chats under the stars.

 

I cannot wait.

 

My children cannot wait.

special kids 1

 

I am bias I  do so love Special kids in the UK. 

 

Some of these people have been my friends now for over 8 years, they have walked beside me through the dark times.

 

They have held me when I have cried.

IMG_1689

 

They have laughed at me and with me.

 

Whatever the dally battle of raising a child with special needs brings I know that somewhere on that forum is advice and compassion.

 

I think Special Kids In the UK is unique, its not aimed at any particular syndrome or disability.

 

In fact many of our kids are undiagnosed.

 

It’s just a place that offers friendship and support whatever the situation or circumstance.

 

I love this crazy bunch of people.

 

We are so different yet so alike in our desire and drive to give our children the best quality of life we can.

 

So yes I am counting down the days to next week.

 

To when I get to pull up on that Field in Wem.

 

When I get to find my little place in this world that makes total sense.

 

The camping field of Special Kids in the UK.