This topic contains 174 replies, has 31 voices, and was last updated by  Anonymous 8 years, 9 months ago.

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  • #5395

    Anonymous

    Hi,

    not sure where you live but if you live in Northamptonshire there may be some support out there.

    If you need someone to support you at meetings etc you can ask for support form SN-IP (Special Needs – Involving Parents) they can go along with you to ‘fight your corner’ etc.

    Again not sure what school your child goes to but, if in a mainstream school, in Northamptonshire the school can ask for specialist support and advice from 2 specialist teachers who can go into school to observe a child and offer specific guidance in relation to your child’s autism.

    Finally I work for the Autism Family support Team who work with families in their home helping to develop autism specific strategies to modify or change behavours.

    don’t know if this is any help.

    Jayne

    #5363

    Anonymous

    Yes i live Near Kettering in Northamptonshire. My son goes to Montsaye Community School in Rothwell…….Who do i ring for support in and out of the home… My daughter any myself find it very difficult to cope.

    I have spoken to SN-IP and they have been helpful.

    Look forward to hearing from you and thanks.

    Just need some support.

    #5357

    Anonymous

    IPSEA google it

    nasreen[8)]

    #5389

    Anonymous

    Hi Jo,

    if you wanted support from the Team I work for -to help with strategies at home and in the community – you would need to be referred to us through a Social Worker from the Disabled Children’s Team (DCT)

    If you don’t have a Social Worker from that Team one can be requested for you by a professional who knows your child (GP, Consultant, member of CAFs etc) by completing an NACPC1 Inter agency referral form. They should know what it is.

    The criteria for support from the DCT has changed recently so they should be able to assess children with Aspergers Syndrome and attending a mainstream school. It doesn’t mean that you’ll definately get a Social Worker but it’s worth a try.

    Let me know if i can be of any more help.

    Jayne

    #5384

    Anonymous

    Hi Illy,
    Name doesn’t ring any bells, but I will make some enquiries and get back in touch. Speak to you soon. Carol.

    #5382

    Anonymous

    Thanks Carol, i also now have a letter saying i wil haveing an appointment with Dr Banhatti, no date yet though

    Hugs Elain

    There is always tomorrow!

    #5403

    Anonymous

    Hi,

    i will give you a ring but as I am not at work for the next few days I thought I’d reply to you as I am not sure when your meeting with school is taking place.

    Unfortunately i am not able to come along to the meeting with you as we are only able to work with families referred to us by the Disabled Children’s Team.

    Has anyone suggested you asking for support from Special Needs – Involving Parents (SN-IP).

    they can provide confidential advice and support for families who have a child with Special needs.

    I have worked alongside them a number of times with families and have always found them very helpful.

    They are especially good at helping parents make their views heard, understood and acknowledged at meetings reviews etc.

    don’t know if that’s any help.

    Jayne

    #5362

    Anonymous

    I have spoken to Dino Cirelli from SNIP, however they will not help until my sons statment is in place. (which is anytime next week).

    I have been referred to Family Support Team at Gainsborough Road Childrens Centre Corby, I have been assigned a helper called Christine York, but she does not work for the Autism family support team, can i ask her to get someone to attend with me.

    My meeting is this friday and i dont feel i have any support to put my thoughts across to the School. There will be the Board of Govenours, Head Teacher, SENCO all putting my son down. He has been excluded a total of 41 days from Sept-Dec 06. This is terrible and i dont feel that my son stands a chance until the School recognise that what they are doing isnt helping my son, just making him worse.

    Please help

    #5364

    Anonymous

    At long last i have now been assigned a Social Worker…. she is happy to attend meetings with me and do some work on helping us as a family at home.

    We have also been offered a group to go to through Childens and Adolesent Family Services in Kettering.

    I have had to really push and keep bothering people for months and months, but i got there in the end…

    My sons Statement of Special Needs is aslo nearly complete, its taken me 18months of pushing for this too. The school are also now getting a Specialist Autism Teacher in to help them understand my son and how to deal with situations correctly.

    My advise to any one is keep ringing and ringing till you get what you know your child deserves…. Its worth it..

    Thanks

    Thanks

    #5356

    Anonymous

    Hi Debs!
    Wow…do I hear what you are saying. My 16 year old becomes possessed by demons for 2 weeks prior to the start of her flow. She is low fundctioning and nonverbal. She becomes boisterous (making whatever sounds she can produce at the top of her lungs), pacing back and forth and in circles, grabbing (in particular- food items) hard to settle for sleep, awakes 2 hours early, pushes and shoves people to get her way, her oral stim fixation is super obessive, and is just completely disruptive and uncoooperative. As the weeks progress, she becomes grabby towards people’s hair and faces, throwing food, grabbing food with her fists, extremely impulsive and quite primitive. Once her flow starts, she is serene, cooperative and very pleasant. Of course, only to start the cycle again!

    We have just started an SSRI drug along with calcium and magnesium diet supplements. This is only the 5th day. The Dr thinks the SSRI drug..prozac, will help with the anxiety and complusive/obessive behaviors across the board.

    Good luck. I really understand what you are going through. It is so very, very exhausting. Not only to physically deal with the girl, but even just observing the behaviors!
    Donna

    Donna Rau
    daredona@aol.com

    #5398

    Anonymous

    Hi,

    my understading is that SN-IP should be available to work with children who do not have a statement yet as they can be called as the ‘named person’ for families going through the statementing procedure.

    Unfortunately Christine York won’t be able to get additional support for meetings etc from the Autism Family Support Team as we can only work with families who have been referred to us.

    If you would like input from us it has to be asked for by a Social Worker from the Disabled Children’s Teams. A social worker from this team is only allocated because you have a child with a disability and for no other reason.

    If you are interested in this Christine, someone from her Team or another professional who knows your son (GP) can complete a NACPC 1 interagency referral form and send it to the local Referral Team.

    I know it is long winded but it is the only way.

    Try SN-IP again, according to the literature I have they should be able to help you.

    Would you still like me to ring you?

    Jayne

    #5353

    Anonymous

    Hi sorry your having such a rough time. i also had a hard time getting a diagnosis my gp offered to refer us for a second opinion but in the mean time i went back to the first dr with a list of reasons why i thought my son was autistic although he still wouldnt give a def diagnosis his attitude changed a got me refered to other services and was helpful with my sons statement .my health visitor at the time was also brill.have you tried asking for second opinion?worth a try

    debbie

    #5354

    Anonymous

    hi not sure about private ,read a message on another forum were parent couldnt get private diagnosis reconised so didnt help in the long run.

    debbie

    #5275

    Anonymous

    The TEACCH approach was developed in North Carolina in the 1970s, and is now probably the most well-known and commonly used intervention in the UK. It is based on the conceptualisation that children with ASD are visual learners, and has developed a model of ‘structured teaching’ to teach to these strengths. Unlike some other approaches (e.g. ABA, Option) TEACCH does not aim to ‘cure’ or ‘remove’ autism – it considers ASD to be a lifelong condition.

    Research supports the benefits of the use of structure and visual supports to people with ASD; and where the approach is used within the home as well as at school, positive results have been reported for both children and families. However, little research has been carried out into the effectiveness of the approach. Some of that which has is internal research from Division TEACCH. Apart from that, there have been only a few small-scale studies in the USA and Europe, listed below, there is little published evidence on its effectiveness and outcomes, and further research remains needed.

    Howley, M., Preece, D. & Arnold, T. (2001) Multidisciplinary use of ‘structured teaching’ to promote consistency of approach for children with autistic spectrum disorder, Educational and Child Psychology, 18, 41-52.

    Hume K and Odom S. (2006) Effects of an Individual Work System on the Independent Functioning of Students with Autism, Journal of Autism and Developmental Disorders, 2006 Oct 27; [Epub ahead of print]

    Lanning, L. (2000) The Effectiveness of the TEACCH Programme. Norwich: University of East Anglia Social Work Monographs.

    Ozonoff S and Cathcart K. (1998) Effectiveness of a home program intervention for young children with autism, Journal of Autism and

    Panerai S, Ferrante L and Caputo V. (1997) The TEACCH strategy in mentally retarded children with autism: a multidimensional assessment.
    Journal of Autism and Developmental Disorders, 27(3):345-7.

    Panerai S, Ferrante L and Zingale M. (2002) Benefits of the Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) programme as compared with a non-specific approach, Journal of Intellectual Disability Research, 46(Pt 4):318-27.

    Siaperas P and Beadle-Brown J. (2006) A case study of the use of a structured teaching approach in adults with autism in a residential home in Greece, Autism, 10(4):330-43.

    And others, Hope this helps

    #5330

    Anonymous

    I too, have wondered a lot about why TEACCH is so popular in the U.K.

    Gary Mesibov and his company obviously are making a living by promoting the teacch concept but in terms of being referred to Gary Mesibov for “research” or understanding any “efficacy” of teacch, this is far from scientific as Mesibov has a financial vested interest.

    I read the recent article by Patricia Howlin who states there is not enough evidence that teacch is effective in teaching autistic children (by the way, i am the mom of an autistic child) and I too would love to know why the UK is using a system for teaching children that has not been proved.

    In terms of determining whether children make any gains with teacch, its very hard to establish in the UK because not much else exists in the schools except teacch. If we do not know what “sour” tastes like, how can we know when we taste something that is “sweet”, i.e. compare?

    My own personal opinion is that teacch is not appropriate for many autistic children, is outdated and provides a very damaging cookie cutter approach to our children, who are all so very unique from each other.

    My own child is not visual, he is very aural. He hates picture schedules and has very good receptive ability. Further i do not believe, like many other parents, that autistic children should be considered living in their own “culture”. Very few teachers will ever understand what it is like to “live” with autism and i think teacch provides a method for teachers to deal with a “condition” that they are often fearful of and simply dont have the time to explore on an individual basis.

    I believe teacch offers a panacea to parents, especially parents who are new to the diagnosis who do not know which way to turn and who will grab anything that is handed to them, out of sheer desperation.

    teacch fits this bill, in my opinion and in this year, 2007, i am amazed that it is still being used almost exclusively in the UK when other countries have moved on from it. We in the UK should be using the best educational interventions in the world, and teacch is not it. The fact that we are “winging” it with teacch, an unproven and unscientific mode of educational intervention frankly stuns me.

    the proof will be in the pudding in 10 or 15 years time when a study will inevitably be done tracking the children who had teacch used in their schools compared to other approaches. I only hope the schools prepare themselves for the onslaught of condemnation from the parents.

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