Contact us
Info for new members / about the group:
DOWNRIGHT EXCELLENT COORDINATOR
Phone: 07534 853271
Info about fundraising/ business:
DEBBIE ALLEN
deb@deeanddee.co.uk
Or leave a comment below and we will reply as soon as we can.
23 Comments
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We have moved to the London area recently. I am interested in getting my daughter (she is 3 yrs old) involved in your speech therapy programme. Will you please contact me with details.
Cheers,
Sunny
Hi Sunny. I have emailed you with further details.
My little boy, Andrew is now 4 years old and is due to start mainstream school in September. One of his main concerns is communication. He is having SLT in his nursery but I am not overly pleased with his progress. I would like to be able to contact other parents who have similar difficulties. I am also currently trying to get his nursery to get him statemented for school which is also taking much longer then necessary. Again, just to know there are parents out there who are in similar situation and to exchange advice would be wonderful.
Hi Catherine. I have emailed you with further details. Stephen.
I have just read the article in the Mail this morning about your organisatin, and think that it sounds amazing. Sadly we live in North Yorkshire, but it is good to hear that people have taken such a positive approach. My son is now nearly nine, and I went through the isolation, the worry and fear that was highlighted in the article, and I too ensured that he missed out on nothing, taking my son along to everything that his older sibling attended like Tumble Tots, Song Box and Gym Club, and as a nearly 9 year old he is a keen member of our local Cubs and swims twice a week. I think that it is wonderful that you have a group that can share information and work together rather than the singular fight that the rest of us parents have to go through. Not quiet knowing if they are getting it right!! Well done.
Thanks for your positive comments Heather. We all feel strongly that our children, as you do with your son, should not miss out on any opportunity available to other kids.
Greetings,
I suggest that the kids are given something to sing about.
I suggest a great song with aspirational lyrics which will give them a sense of achievement – even if the wall is two lengths of rope about a foot apart on the floor.
So, please check out Walking On A Wall at the above page.
If they need the backing track to sing it, I could send an mp3.
Cheers,
Ed O’Toole
Hi, I’ve just moved to London and was wondering if you had any volunteering opportunities. I’ve worked with children with Down’s before and volunteer on an annual basis, but I’m looking to extend this and do it more regularly,
Thanks
Sarah
Hi Sarah
I have replied to your comment via the email address you provided.
Regards
Stephen
Hi Sarah,
If you could give me a call 0207 7oo 6106 or 07846 533 001 we can discuss further.
Many thanks Debra Carlin
I read with interest the article in the ‘Daily Mail’ 26/10/10. We have a son with Down’s syndrome who is now 25. He has been a source of inspiration and never ceases to amaze us with his sense of humour and love of life. At the age of 15 he had to have an operation on his neck vertebrae to stabilise them as they had slipped and were beginning to cause paralysis. During his stay in GOSH he never complained and kept everyone going.He then had to wear a metal’halo’ for nearly 6 months but continued with daily life,as far as possible,and again was cheerful and happy. When he left school at 16, he spent 4 years at a residential college in Wiltshire.(We live in Essex) He loved the outdoor life. He has spent the last 4 years in a house with 3 others with learning disability,as he did not want to come and live at home. The house is wonderful and they participate in a variety of vocational courses, and community activity. Nicholas now serves on the partnership board which act as liason between the council and other disabled groups. Keep up the good work. There really is ‘Light at the end of the tunnel’ and is well worth all the hard work. Good luck with the group.
Anne
It is really inspirational to hear about people like Nicholas, and how they have thrived when given the opportunity. We hope that stories like his will become more common for all children and adults with disabilities. Thanks for responding to the article and best wishes to you and Nicholas.
Hi
I have a 3 year old boy little boy. Am not happy with the SLT he is getting from LA. Would love to get more info on joining your group and any advice on getting more help with SLT and to exchange advice with other parents
Hi Vicky
Where are you based. Our group meets in Islington, North London, although we have families from all over London and just beyond…
we are based in SE London but could travel to Islington. Are any of your events at the weekend as little one is at nursery during the week?
Hi Vicky
We have groups on a Saturday for children of school age – currently 5 to 9 year olds. We’re having a meet-up for families and a sponsored walk on Sunday 26 June on Hampstead Heath if you’d like to come along. There will be plenty of other families in similar positions who would be happy to chat/advise you.
Stephen
My daughter Moyo is 2 on the 19th of September, i would love for her to join the stay and play session if there is space
She was born at the whittington hospital and diagnosed with Trisomy 21 shortly after birth.
Hope to hear from you
Thank you
Hi Sola
Sorry for the delay – I’m sure it would be fine to come along to the Stay and Play and find out more about the group. I’ll send you an email.
Stephen
Hi, I am a Speech and language therapist who has heard glowing reports about the work you do and wondered if it owuld be possible to come and observe this work. I am currently managing a MDT who deliver therapy to Downs kids and am striving to improve the therapy we offer. I would be very grateful if I can come and visit you all. I have CRB and work both for the NHS and independently. Kind Regards, Hazel Ellis
I have a 5mth old with DS and I was hoping to meet other parents who are in the same position. Do we just turn up on Fri at 10am? Are there any forms to complete in advance?
kind regards
Mel
Hello Mel
The group runs termtimes only, so the next session will be Fri 20th April. No forms to do in advance. There is a ‘stay and play’, and parents will be in and out as their children attend Speech & Language Therapy sessions.
Hello, i’m Nataly and i’m a mother of 2 years old boy with DS. Actually we live in Italy, here is the education’s level for our children is very high. We are going to move in London, becouse of my husband’s possible work, but we have some questions about care and therapy for such kids there. For example: is it possible for them to study in ussual school with all other children? How much around the phisioterapy and all other necessary cares cost? if there is the sort of rasizm against them in England? Another our great problem is that actually my son dsnt speak still any language, but has started to understand italian. As me and my husband we both dnt speak English in correct way, we fear to create even more problems to teach our son to communicate with world around. Maybe i’m wrong to ask here, but i kindly ask all possible advises. Sure we want only the best to our son and maybe better for all our family to stay in Italy, at least for near future. I’m sorry very much if i ‘m wrong to ask here, but it was the first site about down syndrome children i have found, maybe i had to look for this kind of information in other places, i beg pardons if i’m wrong. Thank you very much! Best regards!
Hello Nataly, Thank you for contacting us at Downright Excellent. If you are moving to London and would like to put your family’s name on the list for your child to attend our speech and language therapy sessions, we would be delighted to welcome you. As a 2 year old, your son would do very well with other pre-school age children in our Friday groups. We also have other children in the group for whom English is not their first language – so this would not be a problem for your son. Most of the children from our Friday groups progress into mainstream schools and live quality lives with far less prejudice than was experienced in the past.
If you would be interested in further information – especially if your move to London is definite – then please get in touch again.
Best wishes, Debbie Allen, Chair, Downright Excellent