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Deb's picture
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Deb


Hi

Mon 9 Mar 2009 2:48pm

Hi there i am a stay at home mom carer to, two teenagers on the autistic spectrum first there is my son whi is 18 next month who was diagnosed at the age of nine with semantic pragmatic language disorder ,anxiety issues ,ASD traits and learning difficulties he is at college at the moment on a learning supported course from a non verbal 4 year old he has come a long way i am very proud of him

then there is my daughter who is 16 this year she was diagnosed at the age of three with severe autism ,severe learning difficulties ,challenging behaviour she is non verbal and also has epilepsy she currently goes to a specialist school as a day student because local special school  couldnt cope  that was like hell on earth period in our lives ,now the lea are trying to move her back to local school so we are fighting to keep her at her current school where she has improved so much  but of course it costs more money than the lea want to fork out !

and me i am married my whole life is engulfed by autism ,i dont think i have a life out side infact i would say i have picked up many autistic traits , i am hoping this place eventually will become a place of support for me and i also hope i can offer others support too   

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  • paula@talkaboutautism.org.uk's picture
    Hi Debs, welcome to the community and thanks for posting such a great introduction. : ) We're hoping the forum will become a place for people like you - not only to discuss autism issues, but to get your head outside of it - as you say, many feel engulfed by it. That's why we've included a The Social area (http://www.treehouse.org.uk/forums/general-forums/take-break) - for relaxed chat and getting to know each other. Feel free to post in there to say hello or talk about your other interests. If you can, it would be great if you could make a post in the Education section (http://www.treehouse.org.uk/forums/education) about your experiences of education. It sounds like your experiences might be useful for others to hear about. Anyway, I hope you find the community useful. Please visit back often! Remember there is not a link to the community from the main part of this website (as we are not launching the comunity area publicly yet) so please bookmark or favourite the link : http://www.treehouse.org.uk/talk-autism. Let me know if you have any questions. : ) Paula
    Paula Barrett Community Manager talk about autism paula@talkaboutautism.org.uk
  • MarcoS's picture

    Hello Deb,

        Having one child with autism is already hard enough, when I see parents with more than one, I am amazed at their accomplishments.  We love these kids.  But resources (time, money, etc..) is really what they need.  As much as we give them a lot, it seems it's never enough. 

       I'm sure, as this community will grow, you will find plenty of resources and support.  I, for one, will be more than happy to give support. 

       Welcome tot he boards.

     

     

  • Nianya's picture

    HI Deb,

    Totally undestand, I live, eat breathe and sleep (when I can) autism and related issues; I haven't picked up my children's traits, I think they inherited some of them from me.

    Nianya

    Writer, editor, publisher, photographer and mother of two autistic children

    www.magicalmischiefmaker.com

    Nianya Writer, editor, publisher, photographer and mother of two autistic children www.magicalmischiefmaker.com
  • mum2two's picture

    Hello Debs,

    I am another Deb and mum to two boys with ASD, mine are slightly younger than your boys though at 9 and 10.

    Look forward to getting to know you 

     

     

  • ShelaghM's picture

    Hi Deb

    Looking forward to chatting with you

    Shelagh

  • NJH77's picture

    Hi everyone, have just joined up ! Am a mum of 2, a daughter who is 10 and a son who is 22mths .... Have always had concern's about my son but was always told not to worry, thats was until he started nursery, i explained my concern's to them (poor eye contact, constant rocking,will not respond when his name is called,no words spoken or even atempted,likes to play alone,does not really like to b held or shown any love,does not like to be kissed,very strong willed,loves slamming doors,great strength for someone so small)  They have now referred us to Early Years Child Development and Teaching Support, i can not fault anone as yet they have all been brill... He was monitored Thrursday just gone at nursery, then we had a home visit where the feedback was explained to me.. I asked the support worker to b honest with we, she said yes he does show the characteristics for a child with autism, but that he has to be diagnosed by a pediatrician , which we have on the 12th Oct plus a pre-assessment by a nurse (who is coming to the house)on the 21st Sept.

    Of course like all parents, i want the best for my children. Just feel so confused & upset.

    What shall i expect from out hospital visit? Will they diagnose then? I just want to start getting the ball rolling, so Theo gets all the help.

    I am a little confused, as after reading many articals, it seems that Theo maybe to young to diagnose? But then i have been told it will be good to get him diagnosed early so he receives all the help and support !!

    PLEASE COULD someone give me some advice.

    Many Thanks

     Nicole x

     Nicole x
  • bumblebee's picture

    Hi Nicole,

    I am a mum to 3 children aged 4, 11 and 13, all 3 have diagnosis of Autism or Aspergers. I answered a similar question about the assessment yesterday, so I will copy and paste the relevant bit below! My Daughters were aged 6ish and 11 ish when they were diagnosed, but they were diagnosed with Asperger Syndrome and coped well in the first stages of nursrey and school. My son was 2 1/2 when he was diagnosed. When he got to 15 months, it was like he was switched off....it's really hard to explain, but he lost language and interest in people etc...he also regressed physically and his co-ordination began to concern us. After having our daughters and because I work with children with Autism, I recognised his regression and behaviour as being typically autistic. At about 18-20 months, he began to have absences and this really worried me so I got im referred to speech & language therapy and then a Paedatrician and with the evidence of both reports, he was diagnosed as having ASD....actually, I am beginning to repeat what I have copied/pasted below so I'll stop rambling now!! 

    ...............We were referred to a Paediatrician who was lovely. She asked us stuff about pregnancy, birth, feeding, sleeping, early play skills, interests, eating habits....lots really, but nothing scarey!! She was great with the kids and it was really child friendly. She then referred onto an Ocpational Therapist who assessed their skills through play so they didn't mind at all and really look forward to going to see her!! There have also been Speech & Langauge assessments which again are done through play and are child centered....they need to get a good impression of skills and difficulties, but it is done using toys and fun stuff.... With all 3 children, they asked for education/school and any other agencies involved (like and educational Psychologist or Speech therapist) to provide reports of their assessments so they can get a holistic view of the child's behaviour as it is not enough to just observe and diagnose in one consultation with a paediatrician, but they do all this so you don't need to worry (although if the nurse is coming over beforehand this maybe enough). Reports from other people involved can show up areas of particular difficulty or add to the final diagnosis This was our expierience and so far all have been positive in the sence that they engaged my children and the children seemed to enjoy their time with the experts. .............

    I hope this puts some of your worries to rest.....and just to let you know, My daughter who has Asperger Syndrome, has offered to answer some questions from parents tomorrow, if you have any questions that you would like to ask her about how touches/smells/sights/noises etc....affect her (as it seems to be a large area of concern for you about your son) then please post them and any others you may have either here or under 'general autism' - 'autism expert'. It may give you a bit of insight from our children's perspective......Take care, keep in touch......      

    Claire - Community Champion

    Claire
  • JosieB's picture

    Hi Nicole

    Just popped in to see "Hi" and welcome you to the group.  I see Claire has responded with her experience of the diagnosis journey and it was the same for me with my youngest who is now 14, but whose autism was picked up in Nursery School when he was 3/4 years old (he was diagnosed with Aspergers when he was 7 years old;  the delay was due to a very long waiting list and shortage of Paediatric specialist at that time).  I understand that the diagnosis are made much quicker now and as far as I am aware they are now aware that the sooner the diagnosis the better.

    Look forward to hearing more about your family.

    Josie - Community Champion

    Josie - Community Champion
  • Snowdrop's picture

    Snowdrop

    Hi Nicole

    Welcome to the group, I am a mum to a 4 year old who was diagnosed with Autistic Spectrum Disorder on the week of his 4th birthday & I also have a 7 month old son.  My health visitor began to worry about my son just b4 his second birthday & the nursery had concerns too.  Mainly his speech & language delay, wanting to play alone, lining toys up etc.  He was assessed at nursery like your son & they then referred him to see a paed at the hospital.  Dylan had 1 appt, then reports were gathered from nursery etc & then on his second appt he got his diagnosis.  Dylan just played with toys at the hospital so no stress for him.

    I look forward to talking more with you in the future, one hint I would give you is to read through old posts on this site as there is so much useful info on them from parents who are or who have been in your situation & comments from parents of older children help prepare you for the future.

    Tracy

    Tracy - Retired Community Champion
  • NJH77's picture

     Hi Claire & Tracy

    Thank you for taking the time to read & reply to my post.... Just thought i would drop by quickly and say hi, saw our support worker today, and what a lovely lady she is ! Answered all my worries & concerns that i had playing on my mind, said that if we feel we r having a bad day, then all i need to do is pick up the phone and call her !! So a lilttle happier after seeing her !!

    Hope yourself n children keeping well  

    Nicole x

     Nicole x

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