We would like to thank Marie Griffin for her amazing fund-raising. Marie wrote:-
I have an 8yr old son called Kieron with CFC syndrome. In March I won £500 worth of prizes in a local competition and decided I would do my own fund-raiser for CFC and Costello UK. On the 16th July I held a party and a raffle and raised just over £2000. I hope this will help towards the funding of a CFC group which is much needed in this country
On the evening of Friday September the 10th we will be having a joint Costello Syndrome & CFC meeting. The aim of the meeting is to discuss with the families the future of support in the UK for both of these syndromes. A number of ideas have so far been proposed, one being an expansion of the Costello support group to grow and include CFC.
Thank you Marie for your hard work, and we look forward to seeing you and all of the Costello and CFC families at our conference.
Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.
It makes it all the harder when you are constantly seeing reminders of the life that you’re missing out on… family and friends with their ‘normal’ children who are running and babbling and playing… and it really drives into your heart that your child is just not the same as other children.
Last Friday for instance… I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.
Given their close proximity in age it’s only natural that the children are all friends and play well together… that is, all except Nicola.
Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn’t even sit unaided. She doesn’t talk, she doesn’t walk, she doesn’t run… and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.
Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.
Don’t get me wrong, I don’t begrudge their happiness with their healthy children. Not at all! And while I wouldn’t give Nicola up for anything in the world or change anything about her, I wouldn’t wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.
But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us… just when we need it most.
About a month ago we had a massive breakthrough in her communication… she looked at me and she said “Mum. Mum, Mum, Mum.” Of course, to say I was ecstatic was the understatement of the century… until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers… and it wasn’t really a word at all.
One step forward, two steps back.
Sigh.
But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.
Ok, so she’s almost two. I get that… waving for a two year old isn’t a big deal…
But for MY two year old, it’s a mammoth step! It’s phenomenal! It’s more of an achievement than man’s first steps on the moon or the discovery of the theory of relativity.
MY two year old daughter waved! She picked up her hand and waved! She communicated with me!
Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.
Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.
She responded to my waving to her by signing ‘good waving’ to me in Makaton.
She used her finger instead of her thumb, and it wasn’t entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. “Good waving Mum. I’m proud of you!”
The great power of the internet is the ability to get information and share ideas without barriers. This can be a good thing as our support network demonstrates. Costello syndrome is rare, and our membership is spread around the world. Without the web, our group simply would not exist.
Sometimes somebody in a far of land can make insensitive and insulting comments, and offend not only the local community, but communities around the world. On Sunday July 11th ago one such indecent happened in Australia.
Channel seven Australia has a show called weekend sunrise. Being in England I have never watched it, and was alerted about the indecent by one of our Australian members. During a regular segment about a school teacher who was suing the government over her damaged larynx, after constant yelling in order to control a composite class of Year 6 and 7. The regular guest Prue MacSween made some disturbing and insulting comments about children with special needs. I watched the segment on You-tube, (because channel 7 had pulled the segment from their website) to see what all the fuss was about, and was surprised that at no time during the discussion was any mention as to why the teacher was yelling in the first place, and is yelling appropriate behaviour for a teacher in the first place.
As the discussion progressed the following statement was made by Prue MacSween
Children with special needs should not be allowed to be in mainstream, classes with “normal” kids, • they hold them back (children without special needs) • Children with special needs should be “put somewhere and trained” and “properly administered to” • And that all boys are “retarded”
WHAT! did I hear that right. I watched the segment to the end, hardly able to comprehend that not only had a regular on the show just made one of the most insulting narrow minded statement on TV. The shows other presenters made no effort to apologise.
The TV company who make the show have said “Live television is always unpredictable. But clearly, Pru offended many parents with her remark”.
Sounds like an excuse, don’t the presenters and guests have a code of conduct, and if the TV company have taken the time to make the above statement, why have they not apologised to all the parents that have been offended.
On the other hand MacSween did apologise sort of. She made an apology on her twitter feed, she tweeted the following message:-
“I apologise to those people who were offended by my remarks on Weekend Sunrise, however, you have misunderstood what was said.
What a great way to apologise, use twitter, then take the apology back by blaming the viewers for misunderstanding her words. Right, that must be the reason why you can not take the time to formally apologise on air, your apology may be misunderstand .
Over a week has passed, since the show was broadcast, in that time a large and growing protest group has been set up on Facebook site called “Prue MacSween and Channel 7 Should Apologise” with over 2,300 members. The TV station has not apologised for the upset and offence, MacSween has not apologised. I wonder why this would be so hard to do. And sadly the only concusion I can draw is that there is a possibility that the station stands by the comments and is Institutionally discriminatory.
I would like to remind Channel seven and the production company this is the 21st century. Not the 18th, and perhaps if your researchers had spent a little time researching the original story, then maybe such bigoted and offensive views would not have been aired.
To help with future research about teaching, you may like to take a look at the following website BFI , and maybe the teacher in question should find a new profession if teaching results in her yelling in class.
Update 20/07 /2010 9.40 am
After the show aired and viewers complained to the station, the video feed from the show was pulled from the web. Have Channel 7 never heard of the Streisand effect? The video has now been re-instated and can be viewed on-line by visiting the following link : Sunrise Allstars The offending piece begins about 4.44 mins in, after the discussion about the teacher.
I would like to thank everybody who watched the Jeremy Kyle show this morning (15/July/2010) and contacted me with such kindness and support. Cath and I are touched that so many people took the time to contact us through the contact form on our website, or leave us a messages in our Guestbook.
Each day that passes Helaina is an inspiration to us, her smile lights up our days, and each day that passes is precious, to be savoured and enjoyed.
I don’t know what new challenge tomorrow will bring, if some new medical complication will occur. But what we do know the past 16 years has been a roller coaster ride.
Our aim is to help and support as many families as we can, and we can only do that with the support of the public making a donation to our charity, or helping us to spread the word about our work and Costello syndrome.
So if you have a blog, a website or are on Facebook or Twitter, please help by adding a link to us, or tweeting about our site.
God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God’s Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
“PEACE BE THINE”.
It broke our hearts to lose you, but you didn’t go alone,
For parts of us went with you the day God called you home.
In Loving Memory of Willa Clementine Hunt
An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.
I previously wrote about Helaina’s work experience Shortly after doing a few days in the local library she did a second session of
work experience in a local children’s centre. This time it was much more of a challenge, that said she had a good time, worked hard, and got a lot out of it.
The short video below was produced from the Power-point presentation that was made to document what she did and achieved.
We thank all of the staff and parents who attend the sure start centre for all their support.
