#406
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Hi,I'm a mother of 3. my 2 boys peter & paul have a diagnosis of severe autism they attend a special needs school close by. my daughter ava is being assessed for autism as we speak.....she attends a mainstream nursery whilst waiting for her diagnosis to be confirmed then she will attend the same school as her brothers
#407
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Hi Wendy
My daughter Eleanor is 6 and she has Coffin Lowry Syndrome. She has scoliosis, mild learning difficulties (mainly due to her autistic traits and difficulty concentrating and following instructions plus her scoliosis, low muscle tone and poor spacial awareness). She is a very bright, loveable, imaginative girl and it is very rewarding to be her mum. I also have Thomas, who is 4 and am expecting a third child in October.
I'm sorry to hear you're having difficulties with housing and hope that gets sorted out soon. It's so rare to come across someone who has a daughter with CLS, so I wanted to send you a message. Please can you tell me a bit about your experiences bringing up Sophie. It would be very interesting to know if they are similar to mine with Eleanor.
Take care
Susie
(12-01-2009, 08:42 PM)wendynogs Wrote: Hi folks my name is Wendy i am mum to sophie 24 who has a very rare genetic condition called Coffin lowry syndrome I have a 20 yr old called John with no issues well exept diabetes and i have a 5 yr old son Matthew no probs I also care for my two beautiful grandchildren sophies boys who have coffin lowry syndrome both are non verbal have learning disabilities and scoliosis they have little spacial awareness and autistic traits oh and connor prob has adhd they are both seriously high maintenance and life is not easy but they are beautiful boys and they bring out the best in people wherever they go. Connor is 7 and Tommy is 6. I have major problems at the moment getting housing to meet our needs which is how I stumbled on this web site .OH and I guess you would say Ime turning into a grumpy old woman as I am becoming very opinionated and seem to get on my soapbox more often these days am in to all green issues got my first allotment this year more politics and am very concerned by the amount of chemicals/ vaccinations and the impact on our beautiful chidren you see I am off again
lol
Wendy

#408
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hi im a mum to 5 beautiful children, my son sam is 3 going on 80 sometimes Smile he was diagnosed with hypermobility last year which over the past few months has started to get alot worse he is under the local child development centre and his consultant suspects asd we have not had a diagnosis or an appointment for over a year due to a long waiting list we were due to see consultant last month but was cancelled it gets so frustrating sometimes, sam goes to the local childrens centre nursery and really enjoys it as he has his own worker they are not sure he will cope in a mainstream school though due to the adult child ratio, and they have been fantastic, still feel very alone though sometimes and get upset wandering what the future holds for my special little guy, look forward to getting to know people on here and hopefully some advice
#409
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welcome all the new members and thankyou for sharing your stories with us Smile if their are any specific queries or problems you have dont forget to start a thread of your own, their are so many members out there willing to offer help and advice xx
#410
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Hi all, mum to 3. Live in Belfast. Malachy 5, Meabh3 and Conleth 16 months. Malachy severe autism, severe learning difficulty & adhd. Very active boy with lots of sensory problems. Diagnosed aged 20mths. He is severely delayed in all areas except gross motor skills!! Loves climbing running jumping spinning squeezing biting!! He is non verbal. Using a little PECS and signs for things he likes like lollie biscuit park! He is generally a happy boy full of fun. Problem being he requires too much fun too much of the time. We are looking into sensory integration programme for him at home as we need to try a calm his behaviour. Have looked a little into Brainwave but not too sure if it would work for him. He goes to SLD school and has a 1 to 1 there because of h & s. Dont feel he is getting best opportunity t learn whilst at school as most of his day took up with challenging behaviour etc. He is only recently diagnosed with ADHD. He isn’t on medication (yet). we're told by his psychologist that it might just take the edge of his impulsiveness but really not going to make dramatic difference. Just dont know what to do for the best!! Might send separate thread seeking advise.... Cat


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