Support for parents of a Down Sydrome child

Replies

By keighleymum

Re: Support for parents of a Down Sydrome child
Mon 3 Mar 2008 17:07

Hello I have a 10 year old daughter who has down syndrome and additional communciation difficulties. I have had lots of expereince of the prejeudices many professionals have against children and people with down syndrome. Their expectations are often incredibly low and there is this inherent belief that they cannot talk properly any way so why waste resourses when a greater impact can be made on other groups ie stammering, EAL etc
If you want to pm me or email me let me know Id be glad to tell you about our experiences.

By Dawn Raider

Re: Support for parents of a Down Sydrome child
Mon 3 Mar 2008 20:34

My son has DS and is thirteen. His speech is intelligible and clear - I think because he has always attended mainstream nursery, primary, and secondary school. He has attended private elocution evening classes for 30 minutes a week on a 1:1 with a retired former mainstream qualified speech and drama teacher for several years, and this helps his pronunciation a lot. Speech therapy has not had much - if any - noticable impact.
I would recommend mainstream speech and drama classes - there is nothing wrong with good old fashioned methods. Specialist provision of any kind has an opportunity cost, (i.e. removal from mainstream) and that is rarely considered when carrying out formal effectiveness evaluations.

That said, kids who grow up in big families or lively inclusive communities, and are immersed in and surrounded by lots of real-life communication opportunities are bound to do better than single children, arent they?

By keighleymum

Re: Support for parents of a Down Sydrome child
Wed 5 Mar 2008 17:21

How did you find your sons speech theacher? I think this is defienetley something that would help as my daughter loves acting out dvds. and has a brilliant memory just additional speech probelms.
I have been unable to get a private speech therapist and have recently transfered her to a school where she gets weekly group speech therapy( best I could get after years of trying).
I would be interested in finding out how you found someone and what he did?

By Colesh1487

Re: Support for parents of a Down Sydrome child
Mon 10 Mar 2008 12:57

Thankyou for your responses keighleymum and Dawn! Much appreciated. And thanks for the offer keighleymum, if there is anything specific that I need to ask once I've looked into things a bit more I'll definitely be in contact!

Thanks again

By Colesh1487

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 12:21

Any carers of a Down's syndrome individual... I was wondering if many of you actually managed to have your own social worker? If not where did you feel you got most help and support from? The DSA? Other parents? Do you feel the NHS could be doing more?

Were you actually allocated someone to deal with your problems or concerns?

keighleymum, I tried to PM you but I could not really find a way of doing so! and there was no email address on your profile? Dont know if I have missed something or if I'm having a blonde day?

Hope someone can help! Thankyou

By Colesh1487

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 12:35

Oh and also, upon the birth of your child, was any counselling offered to help you come to terms with the shock?

By jeanette

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 12:50

Hi Colesh. I do think that a very important point is how A new parent is told that their baby has Downs syndrome. My own experience was horrific .Was told to forget her and buy myself a dog!! I remember what was said word perfect after 40 years!! I have heard that some parents are still being told in a more than unsympathetic way!!
My experience of care and support (there was none ) is to long ago to be of any relevance now, but can give you lots of info of the needs of older Carers who care for an older person with Downs Syndrome, but know you are interested in the very young and their new parents!!!!

By Colesh1487

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 12:58

Oh my god it is shocking how unsympathetic people can be?! It thankfully seems that things are improving now but it seems like there is still such a long way to go... A lot of the research I have done suggests that the moment parents are told stays with them forever.

Yeah unfortunately the exercise is that i have just given birth to a DS child... but thank your very much for the offer. And I'm sorry to hear that you had to go through such a hard time with so little help. Doing this assignment has really opened my eyes to what carers go through....especially in previous years!

Thanks again jeanette

By SarahD

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 16:41

Hi guys, just a gentle reminder - I know everyone here has posted numerous times and knows what I'm about to say, but please, please remember to guard your confidentiality. Please do not post any personal details - about you or the person you care for unless you are completely comfortable to do so. Please also remember that you are not allowed to post your email address on these boards. If you want to get in contact directly with Colesh, do send us an email at web@carers.org and we'll pass it on to her.

Thanks and have a great weekend

Sarah (sorry for being mum)

By EL

Re: Support for parents of a Down Sydrome child
Fri 11 Apr 2008 20:14

Hi, you asked if we thought anything was lacking that we would like to be implemented? to be honest common sense is lacking. My sister is 44 years old, every year she is visited and is subjected to an assessment to make sure she still qualifies for the benefits she gets. Now i can understand that maybe the first 10 years of her life could be suject to change due to educational /psyhcological support, but for her to still have to go through the unsettling and at times intrusive mental and physical examination at the age of 44 is an insult. Last year she was diagnosed with Dementia, she is detriorating quite quick, even though she is on Arisept(not sure of spelling) and had the dose increased she is still to through this cruel invasion of her privacy. Surely her files should be enough to say she will not get better, inprove or change, complaining to the authorities is like bashin your head up a brick wall. So if anything could be changed i would like it to be that people like my sister who have DS get the respect they deserve.