Does anyone have a child with SEN?

Question

we have a son of 10 who has a genetic disorder,learning difficulties comes with the sydrome,he also has slight hypotonia.Is anyone in the same or similar circumstances.It would be fantastic to chat with other mums as we get no help whatsoever with our son(apart from the special school he will be starting in jan 08)

Answer 1

I have a daughter with Downs.

I realise you must feel lonely.

Go to your social service office and ask for a list of support groups. You can try the local branch of MENCAP the address is in the directory or on their website.

Cheer up you will have many happy surprises.

Answer 2

No i dont but merry christmas to you and your son.

x

Answer 3

Hope this can be of some help.  The school I chair the governing body at is proud of it's record of positive results with SEN.  There ia a designated team of staff dedicated to seeing that the students are supported in all aspects.  Schools get an extra financial allowance for each SEN child.  Individual records are kept of their progress and teachers meet to discuss individual development.  The term 'value added' indicates progress and is audited by the Local Education Authority to ensure the school is working for the child's benefit.

Be sure to keep in contact with the SEN Teacher.  Parental involvement is appreciated and is to the child's advantage.

Answer 4

my daughter has a sen, she has severe learning disabilites, developmental delay, disease of the white matter in her brain and loads other problems, she is at mainstream school at the moment but moving to special school feb 08, if you want to chat feel free to email me.

Answer 5

hi Hun.....

yes two little boys. Thomas 6 and Joshua 3!!  both on the autistic spectrum.

Thomas has quite sever autism, and a high level adhd., he has attended a special needs school since 5 years and he'll always be in the special need system!!  it affects all areas of his development. physically he's amazing, tall , lean and very athletic. he never stops,he loves all sports and has even been bungie jumping!!!!  is on the go all the time.

self help skills are very poor. he's still in nappies and needs help with most things. communication is also poor. he understands makaton sign language, and uses the P.E.C's system. but the worst thing by far is his constant lack of danger...he'll run into roads, climb onto high ledges and jump, play with hot things.....i have to be SO vigilant  all the time!!!

he has Ritalin for the adhd and melatonin to help him sleep...........that's the problems............he's the most Innocent, beautiful, calming child i know!! biased i know, but he's SO gentle and loving...a cuddle from him means sooo much.

joshua is higher functioning..sometimes it's hard to notice but it's there. his abilities are the same as any other 3 year old....and in some areas he's advanced.....the only prob at the mo is he's very vocal! he tells people what he thinks and has no tacked...ie if your fat he'll tell you, usually loudly. can be embarrassing at times, wish i could hide a a hole sometimes!! he is also quite agressive and will lash out for no reason!!

all that aside he again is very loving and he's my little helper!!

life is mad. manic and very hetic!! good job i have bags of energy otherwise, it'd be too much of a stuggle. this is my life, they're my children and the most presious things in my life!!!

i'm lucky as i have a close family, and i have restbite care from the social services...can you not contact them for help with your son....sorry are you in the UK?

there are many of us out there, but it can be soul distroying at times!!!!  my emails always open....if you ever want to chat..about anything, i'm here!!!

when he starts sns you should be able to acsess more help and support!!

do you get disability allowance for him?

sorry rambling now. have a good Christmas x x x

EDIT...thumbs down troll, don't ever give me a thumbs down for talking about my kids...stupid sh*it!!!!!!!!!!!!!!!!

Answer 6

If you place a search on the computer for Every Disabled Child Matters or the name of the syndrome your child has (if diagnosed) then you will be able to find support from families with similar difficulties as your own.  I think the name of the other society/organisation which can help is called PRISMS.  There is also one specifically for families whose loved ones has an undiagnosed genetic/chromosome disorder.  I have son with profound and complex learning disability, severe autism, chronic epilepsy and severe (at times, life-threatening) challenging behaviour.  My son is now 19 but due to the severity of challenging behaviour which he can present with, we have always had major difficulties in securing and maintaining support services for him, i.e. schooling, respite, etc; We now cope alone due to transitional failure and will have to continue to do so until the Local Health Board have finished his proposed intensive care package of support, of a day-placement development.  It can be very difficult at times and I hope that you find the support which you need from a family facing similar difficulties as your own.  I wish you and your family well.