After a little time out – we are back!
Chatterbox has been running weekly speech therapy sessions as usual, but with one thing and another, the website updates have not happened.
We are back now though and decided that we needed to come back in the BIG way!
Therefore, I am going to give you some small clues over the next few days as to what we will be doing.
Clue One:
_”UNDERSTATED ELEGANCE OF A VINTAGE STYLE WITH A SLEEK AND SIMPLE STRUCTURE”_
hmmmmmmm – any ideas? Watch this space …….
HAPPY CHRISTMAS!!
A lovely team from St Pirans school in Maidenhead are running in the Santa Fun Run in Marlow this Saturday, raising funds for Chatterbox!
A team of children and parents will be dressed as Santa and will be dashing through the streets of Marlow, aiming to complete a 5k course. This will be the first ‘race’ many will have completed and it is fabulous that they have chosen our Group to support.
They are already over 1/2 way to there target of £1,500 – which is incredible.
If you are able to support us we would be grateful for any donation, not matter how small.
Go Team Chatterbox!
Chatterbox are proud to announce a very special screening of My Feral Heart.
DATE: Sunday 13 November 2016
TIME: 5.00pm
VENUE: Regal Picture House, Henley on Thames
Simply click on the link below to go directly to our page. Here you will be able to ‘Reserve a Ticket’ to the film. Each ticket costs £11.50, however if you wish to support Chatterbox, please add the word ‘chatterbox’ in the ‘Promotional Code’ field when booking. This will donate £3.50 directly to Chatterbox and will automatically put you in to the prize draw (which will be drawn at the screening).
My Feral Heart features a lead actor called Luke (played by Steven Brandon) who has Downs Syndrome and struggles with daily life after his Mother passes away. This film has been premiered in Los Angeles (LA Lift Off Film Festival), San Jose (Cinequest Film Festival – where it won Audience Award), Asia (Singapore Minds Film Festival), London (East End Film Festival 2016), Edinburgh (Edinburgh Film Festival), France (Cannes Film Festival) and now you have the chance to watch it in Henley!!
Please tell you family, friends, neighbours, work colleagues and encourage everyone to come along.
NB: Word of warning – I have seen the trailer and you WILL need tissues.
#Notsodifferent
Is it really that easy when you have a child with additional needs?
The school holidays can sometimes be very stressful for a child with Downs Syndrome. The ‘routine’ that school life brings, makes a child with DS feel secure, knowing that they can anticipate what is going to happen next (the next hour / day / week etc). When this structure is removed and what usually happens on a Wednesday is suddenly completely different, this can be very unsettling.
It can also be quite a challenging time for parents and carers. You are never fully relaxed when you are looking after a child with DS and always need to have your eyes on them (as I recently discovered when I took my eyes off my son for literally 5 seconds when in a large department store and in that time he saw his opportunity to run off, get into a lift, go down to the ground floor, run around a bit more, then go back to the 1st floor via the stairs! Leaving me is full, 100% state of panic mode – his explanation for doing this was ‘he wanted to go in the lift’!!!!
Most children with DS are also very sociable and given half the chance will talk to anyone (which is quite charming most of the time). School works with our children to help them understand the concept of ‘Stranger Danger’ however its a very difficult concept to accept, when you are wired to be naturally inquisitive and friendly.
Having said all of this, our children can help us relax.
They have a truly amazing way of appreciating the smallest things. Things we may miss in our normal, busy lives – a tiny spec of glitter on the pavement, a cloud in the shape of a butterfly, a funny picture in a newspaper. For this we should be grateful.
Enjoy your Summer.
Relax.
Appreciate the small things.
One of our Members recently attending a demonstration at the Houses of Parliament and I thought it would be really interesting to get her account of what happened:
“I got the train up to London on a freezing cold morning. I had on my yellow jumper as we had all been asked to wear something yellow to reinforce the Down’s Syndrome awareness colours of blue and yellow for the day. It was a very long time since I had been on a demonstration and I wasn’t entirely sure what to expect.
I got to the Houses of Parliament and was met by a large crowd of people all there for the “Don’t Screen Us Out Parliament Demonstration”. There were parents, grandparents and siblings of children with Down’s Syndrome, all there as well as several people with Down’s Syndrome. We had a variety of banners, balloons and flyers and made our presence known in front of Parliament for two hours. We got lots of attention from passers by, tourists and people going in and out of the Houses of Parliament as we chanted “Don’t screen us out”.
So why were we there? We wanted to send a message to Jeremy Hunt and the government that:
1. Proposals to introduce a new pre-natal screening test that is projected to lead to a profound reduction in birth numbers of people with Down’s Syndrome are highly concerning.
2. People with Down’s syndrome should be valued in our society.
3. The Government should be putting much more effort into supporting people with Down’s syndrome and their families, and ensuring the provision of balanced information for parents with a pregnancy diagnosis of Down’s syndrome.
Various people also spoke. First of all Sally Phillips (from Bridget Jones / Smack the Pony / Miranda fame) spoke to us over the phone from Pinewood Studios. Then someone from the Downs Syndrome Research Foundation and Saving Down Syndrome UK, and Lord Shinkwin who sits in the House of Lords and focuses on disability equality issues. Finally Heidi, a young lady with Down’s Syndrome who gave a fantastic speech!
I then had to leave but the group continued to the Department of Health, and to the Palace of Westminster to meet with MPs. This was the beginning of a crucial campaign for the equality of everyone regardless of ability.
For further information or to support this cause, please visit:
We have always been incredibly lucky at Chatterbox to have so many lovely supporters. We are often contacted by people who have heard about what we do and would like to help in some way and this blog post is just a very small way of us saying a very BIG thank you to a few recent people who have supported us:
Cookham Dean Primary School
Furze Platt Junior School
The Maidenhead Lions Club
Natwest Bank, Slough Trading Estate
Stoke Park Hotel & Spa
These lovely flowers are for you ………
You may not be aware but on Monday 21st March 2016, we will be celebrating World Downs Syndrome Day 2016. This day is recognised by the United Nations and will be celebrating its 11th anniversary this year. The reason that this day in particular is chosen is because people with Downs Syndrome have a triplication of chromosome 21.
Each year people with Downs Syndrome encourage their friends and family to wear different socks to signify that everyone is different, not just those who happen to have a disability.
We will be wearing our craziest socks and encourage you to do the same!
More information about WDSD 2016 can be found here: WDSD 2016
Chatterbox was set up by a group of parents who were all dissatisfied by the lack of speech therapy they received from the NHS, so took it upon themselves to form a Group where regular speech therapy could take place, in the school setting (so as not to disrupt the working day), with the support of the child’s Teaching Assistant.
Why is speech therapy so vital for our children?
Speech and language intervention is probably the most important focus for children with Downs Syndrome, both in terms of cognitive and social development.
We have found that in most cases, children of school age with Downs Syndrome, use spoken language as their main form of communication. This is often backed up by ‘Makaton’ (a form of key word signing), but by the time a child starts in Reception year, the aim is very much to focus on the development of speech, clear production of small sentences and articulation which in turn also supports the start of early reading techniques. Most children with Downs Syndrome have a much better understanding of the spoken word than production of sound.
Our Therapist works very closely with each member of our Group and gets to know what motivates and encourages them and what they find difficult. The Therapist works with the TA to set objectives on grammar, comprehension and production as well as articulation, phonology and intelligibility (ie. pace, tone of voice etc). Oral-motor assistance is also reviewed (chewing, biting, feeding, drinking) as this directly links to speech and is something which is closely monitored in the early years.
We are grateful for the lovely Therapist we use presently. Our children look forward to her weekly visit and she makes the sessions fun, lively and engaging.
Although Chatterbox is an independently run, voluntary group, everyone at Chatterbox is also a member of a local support group for families caring for some with Downs Syndrome called The East Berkshire Downs Syndrome support Group (EBDSSG).
This Group provides invaluable support for parents who have just been given a Downs Syndrome diagnosis in pregnancy, those who find out their baby has Downs Syndrome at birth and then offers ongoing support, advice and friendship throughout their lives, into adulthood.
The EBDSSG is a well established charity that currently supports 68 families in the local area. They are affiliated to the Downs Syndrome Association (charity #1147303).
For further info on EBDSSG, please take a look at their website – ebdssg
chatterbox ............online 