General Chat

well we went to the GP today & got a referral - feeling a lot easier about it now. Penny

Brilliant news Penny, I hope things start moving quickly for you all. Please keep us posted! Maz. XX

I am glad Penny you are getting help and yes it is hard when the kids are off school mine are bored to easy

Penny that is good news, I hope things start to move quicker for you now. Selina the change of routine is hard for my son to cope with. The first week is always ok but the second week is a nightmare, he is refusing to leave the house at all - even trying to bribe him with a visit to McDonalds but still he will not go out. Julia

Hi Selina they are fighting like cat and dog unless I keep them separated! both want to be on pc all day! Jamie keeps on and on and on about having friends over, then when they come he plays with them for a while, then expects them to watch him play the PS2! Can't afford to be going out all the time, so we have to be at home a lot. Thank goodness they have been away for 10 days (doesn't feel like it now lol) and are going to in-laws from Fri til Weds! Hope you are managing ok too?! If you are near London, then come and join us in Regents Park on Friday! Maz. XX

I know this is an old thread but thought i would nudge it and say hello at the same time (i wasnt a member when this thread started). Hope all you ladies with special needs childen are ok and all your children are getting the help they need Sharon mother to a child with Autism and SLD

Thank you Sharon for joining us and it is fine this thread needs aired a bit lol

Hi Val I think its a great thread, glad to hear all fine. i'm just hitting a sticky patch moving schools!! but I'm armed with all my questions for meeting on tuesday.

Make sure you ask all the questions and write everything down

Hi Sharon :-)) we are doing ok thanks! Jamie is having weekly sessions at school to help with his behaviour (anger management and calming techniques) so hopefully that will help things! Maz. XX

We have a condition called Fragile X Syndrome, in our family. Its a genetic condition, more common in boys than girls. We have 5 sufferers in our family. My brother has it quite bad, he wasn't diagnosed until he was 13, it was after that other members of the family were tested and diagnosed as either sufferers or carriers. Fragile X is as common as Downs Syndrome but still not many people have heard of it although it was first discovered in the 1970s, before my brother was born. He was hard work as a child, he would have violent outbursts, slow learning, behavoural problems and speech problems. My mother was once asked by a social worker if he was neglected because she noticed he was born 10 years after my sister they assumed he wasn't wanted. A teacher basically told my mum that his bad behaviour was down to bad parenting. This really upset my mum, I think my mum and dad were brilliant parents, firm but fair. If I see a child myself being extra naughty for his parents, I do not judge or criticize, as some might do, because the naughty, spoilt little brat who needs a good hiding, that I've heard people say numerous times, it may be they can't help it. My brother looks OK but mentally he isn't. Since he was diagnosed 15 years ago, we know how to handle him, and how to prevent him losing his temper and losing control over what might be nothing to someone who doesn't understand, e.g. we don't sing happy birthday to him, he hates the attention, if something doesn't go to plan he will lose his rag. When he was younger things at school improved as well because the teachers knew what to do to avoid him lashing out in temper, e.g. taking him to assembley first, instead of having to walk into a room full of people. He is not comfortable with crowds, although this has improved over the years. He has his humerous side, he makes everybody laugh and I mean laughing with him not at him. For all his problems, I wouldn't change him for the world. Not even for a day.

Hi Carol, my daughter has no physical disabilities as such but is very developed for a 10 year old, she has Autism, challenging behaviour and SLD, I learnt along time ago to ignore the stares when she's kicking off. Hi Selina, hope things are ok I havent spoke to you before but if i can be of any help let us know. hello to all special needs parents hope you are all well and remeber you are never alone Sharon

Hi Selina, nice to see you. I would say to keep notes of the things you notice, then ask for an appointment with the SENCo at the school and talk to her about them. You could also make an appointment with your Health Visitor. Do you have a date for the assessment yet? The Psychiatrist/Psychologist will want to talk to you as part of this, so it will be useful for you to have the information to hand. They will want to know about her history - from birth - and development and any past and present problems you have. Don't be embarassed about telling them things - they have heard it all and are great at talking to the kids about them. Even if you feel the problems are solved, make sure you tell about them as they may recur. Good luck :-)) Maz. XX

Thankyou Maz. My 7 year old grandson has just been confirmed dyslexic and although this is not in the same league as some of the children on this thread I have gained great comfort from reading the stories here. Jean x.

Hi Jean :-) I hope he can now get the help he needs, so he doesn't have to struggle any more. Tinted overlays, tinted glasses etc should all be available. Tell your daughter to arrange a meeting with the SENCo (Special Educational Needs Co-ordinator) at the school, when she is better. Maz. XX

n for puss to see Julia

another N for puss

My 10 year Son has got 'Moderate Learning Difficulties' He has to go a special needs unit every morning and then onto mainstream school at dinnertime. I have asked for a Dyslexia test to be done and the Schools say they won't do this. Surely it is my right as a Parent that If I think he has Dyslexia to be tested for it? A school psycologist was quick enough to turn up and say yes he's got a problem, but they never turn up to any of the meetings or explain what it is that my Son has actually got....they just keep saying 'moderate learning difficulties' which to me could be anything. Bless him, it takes him a good half an hour just to read a simple book and needs so much help with homework ~ which he does get from me, I don't feel like the schools are doing enough for him to be honest. Stella X

Hi Stella, Won't either school help you? Have you actually met with the SENCOs and/or the Educational Psychologist? There are several things that I think you can do. You could try going through your health visitor and/or GP. You can contact your local Parent Partnership www(.)parentpartnership(.)org(.)uk. Or you can get in touch with your LEA. In the first instance I would write to the schools asking for a meeting with the SENCO. Keep a copy of your letter. Then at the meeting you can go through your concerns with them. Try and write notes before you go so that you don't forget anything. Best of luck and please let us know how you get on - lots of people here with experience of struggling against the system! Maz. XX

My niece's son has dyspraxia and is age 5. He is still in nappies. Not knowing a lot about dispraxia, I am wondering just what sort of age someone with that illness reaches before he stops having to wear nappies? Would anyone know?