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Hello - new to the NAS

missemma04

Hi, I'm Emma,

Step mother to Eve for the last 13 years, who is severly autistic in addition to other difficulties she has as a result of an undiagnosed genetic condition.  She is at the severe end of the spectrum - no speech, mental age of 2/3, tantrums like said mental age, rocking and flapping behaviour, no patience, routine and task centric etc. etc.  I recently became aware of the NSA through fund raising for them, running the Great North Run in September.  I've joined the forum for some help, support, advice etc.  She's with us (me and my husband Andy, her dad) every weekend and has been for the last 13 years.  She'll be 14 in December.  Her behaviour is becoming increasingly challenging and difficult to manage - her physical age combined with her mental age is making that worse.  I'n here for any support and advice from the forum!

  • Hi missemma,

    I am a mum to a 14yr old with Asperger's who is high functioning (a geek!) but with massive anxiety and social issues. However, I also work with students like your step daughter in a local special needs school. I have to say, it's the hardest but the best job in the whole wide world! I think I will be there till I retire!

    I often wonder how the parents cope, as my child is very different, but I guess I find a way of coping so these parents must do too. Recently I was on a training course lead by a charity called The Challenging Behaviour Foundation. Are you in the UK? They are based in Kent but you should google them. Their training was brilliant and their knowledge, outstanding. It might be worth getting in touch with them.

    Eve (and your husband) are very lucky to have you!

  • its obvious how much you love her, im the same with my partner, he can be, lets just say, a 'challange' sometimes, but if you love them and know they cant do much about that part of them, you accept it and learn to live with it

    they have a unique view and i have always said thats what made me fancy and fall in love with him

  • Wow!  Thanks some one!

    She's been in my life since she was 6months old so she's my norm.  And you know, you would cope.  You have no choice.  We at least get some respite as she's only with us at weekends, but it's getting increasingly difficult to take her out and about as her behaviour is so unpredictable.  She has a normal happy healthy older brother who's also struggling with her behaviour now - she's spoiled so many outings over the years.....

    I love her dearly.  Despite her erratic beahviour she can be the cutest, funniest child. 

    Emma x

  • you are another one of the people i say wow, i admire you so much, i sometimes feel lke such a whinge seeing as at least my partner is a grown adult who at times can be reasoned with, a child, i couldnt cope with and i think its amazing that you do

    i cant help much on the having a child with autism, but i think i do ok with being able to listen, talk and give lots of peppy words ,and feel free to give me some back tooLaughing

  • Hi Emma,

    My name is Shelley.I am also new to the site despite being a mother of a 21 year old with Aspergers! I just thought I would say hi and hope you find lots of help and support.