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Not sure what to do!

mozlady

Hi,

My 6 year old was diagnosed with Able bodied Autism a month ago. We just dont know what to do. We always knew that something was diferent but now we have had the diagoisis we just dont know what to do next.

We seem to be suck im limbo waiting for reports from the hospital and it's very frustrating. Has anyone got any advice to offer us cause we are not sure what to do next. His behaviour is hard, we try to understand what hes going through but we come accross stummbling blocks all the time wondering how to deal with things. We cant take him out anywhere because he is a knightmere and the looks and responses we get from other people is awful. We have no support from family and friends and we feel so alone.

Any help would be greatly appreciated.

Moxlady

  • Thank you for all your advise everyone!.

    It sure is nice to know that people are going through and been through what we are experiencing. My little one is very angry and confused all the time and we really struggle to cope with his moods. He dosn't understand them either and it is so hard to get him to understand them. Well, if we can't understand them - how is he meant to. lol We realise that we are at the beginning of a journey with him but understanding that he is still our little boy and he is no different now than what we was before the diagnoses.  For us that has been a big one to come to terms with - small steps we keep telling oursleves.

    Your advice is much apreciated, much love to you

    Moxlady

  • Dear Mozlady,

    I hope that you'll find the site a real support in not being quite so alone. I put my first post here, a couple od days ago and it was really good to have that contact and know others have helpful ideas or a sympathetic ear. 

    Our little one is 5 and was recently diagnosed, although I too knew, when we actually got the diagnosis it hit me REALLY hard. We too don't have family to help and yes it definitely can be hard work.

    BUT you will definitely get there. I've found over the last couple of months that bit by bit we've changed, our social life and activities change and we are taking new steps in a slightly new world with some friends and relationships and rather than "can't take him out anywhere" have found little by little new adjustments that work and new places to go. 

    A slightly cheesy phrase that I actually liked and that helped with others reactions was "people who matter don't mind, and those who mind just don't matter" and a paediatrician said when your child is being off the wall try to remember they may actually be doing the best with the situation they've been given. He said to think rather than oh my how awful, people are staring etc to think my child may be doing that because their brain doesn't like noise / pressure / crowds / spontaniety etc and so they're doing their best with where they are.  

    There are times I too think Oh my goodness !! but it really helps to find other families little by little who love, respect and understand raising a child with ASD and just one good bod who you can feel "safe" to visit etc, is worth a million.

  • Hi Mozlady

    Thanks for posting.  I am so sorry to read about the problems that you are experiencing at the moment.  I can really understand how you are feeling and the confusion that you are experiencing.  I felt just the same when my son was diagnosed.  

    I have put a link below to information about what to do after you have received a diagnosis.

    www.autism.org.uk/afterdiagnosis

    Everyone on the forum is here to help and support you so please continue to post if you have any further questions or need to let off steam

    Good luck 

    ColinCat

     

  • Hello there,

    If in the UK, there should be support services you can access through your child's school - excuse me if I'm making assumptions - but if he is in school in th uk, speak to the Special Needs Co-ordinator about what's available, as unfortunatley it does vary depending on where you are in the country. Hopefully some or all of the following

    1. A home/school liaison book to celebrate successes and share concerns. 2. Outreach Support Service for school and for yourselves (including home visits if needed), from Specialist teachers who can offer advice and support, especially around behaviour and getting out and about issues 3. CAMHS, (Child & Adolescent Mental Health Services), accessible through your GP or school support services may be able to give support and advice 4. SEN services at your Local Authority can help with school provision etc, and will also be able to steer you in the direction of Parent Partnership Services, which can guide you through what's available in your area 5. In my experience, for many people what helps the most is talking to others in the same situation, so if you can find out if Earlybird or Earlybird+ are happening in your area (parent partnership would know), this would be good.

    Finally, hang on in there, I really feel for you reading your post. Effective communication is often key to reducing behaviour problems - I'm guessing a Speech & Language Therapy report may be one you are waiting for? If not, push for this, as once you & your child can engage in effective 2 way communication at whatever level is appropriate, I think you'll find you take huge steps forward. I hope you soon find the local support you need to help you feel not so alone.