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Need advice as have concerns about my daughter.

Modgiemoo

Hi, I thought I'd come here to ask for advice from other parents.  My eldest daughter is 8 yrs old, she will be 9 in Feb.  She  has had no particular health problems, in fact pretty robust constitution. there are a few things however, which cause me concern and have tempted me to question if she has some form of autism.  The biggest thing is her lack of progress in reading/spelling/writing in school as compared to her peers.  We have had her eyesight checked and her hearing checked.  In 2009 her hearing test showed below normal but just recently it was fine.  Since nursery she has chewed/eaten non food stuffs, plastic pegs, paper, chalk, bluetack etc, her favorite being paper.  I have watched her deliberately seek out or go for paper and sneak a tear off and either conceal it or put it in her mouth, (if she thinks no-one has noticed). She acts very immature compared to her peers, she will make strange noises, does funny moves and becomes quite hyper.  She doesn't play games with us as a family in the same way her little sister does.  Her younger sister focuses, pays attention and works out the strategy, DD1 doesn't sit still, always fidgeting.  She is very easily distracted, very giggly, tends to have wetting accidents when laughing.  I have made an appointment to have her assessed at Jordan's Eyes in Ayr, partly to rule out dyslexia or the need for colored lenses, but they also look at the autistic spectrum.  Regardless of the outcome I just want to know we are doing all we can for her.  I'd appreciate anyone's views/thoughts on this.

Thanks

  • Hi, just wanted to say that you are doing absolutely the right thing. I ignored my daughters odd behaviours for a long time, thinking they were just quirks and she'd grow out of them. She's always had problems with clothing, odd routines and disturbed sleep, she's almost 12 and just after her 11th birthday I went to see my GP who refered her to our local child mental health team, this didn't seem to get me anywhere and I was constantly fobbed off. It finally came to a head at the begining of October when her clothing obsessions became so bad she was causing herself physical harm (she wears her 4 belts and bra so tight they had caused her cuts!) I took pictures and took them back to my GP who rang the head child psychologist and basically shouted at him down the phone 'this child is displaying classic Asperger symptoms and your service are doing nothing for her!' Thanks to my GP she has now jumped the waiting list to see the psychologist by about 2 years!!  I ignored her behaviours because she's highly accademic and only ever had problems at home.

    I guess what I'm trying to say is I wish I'd looked for help earlier and also it's a long slog, don't let people fob you off. You know your child best and if you feel that things aren't right push as hard as you can. Good luck and keep us posted.

     

  • Hi there Modgiemoo,

    Just to reassure you that, as Longman says, we do care, but may not have pat answers for you. I do remember. though. how awful the wait was before an appointment, and wondering how to speed things along. That was 25 years ago!! Our son ate everything he could lay his hands on, even once a glass full of used fat drained off from frying pan etc! We couldn't understand why he did these things, and only got a diagnosis of autism on paying privately when he was 10, by which time we were desperate.

    I understand from other people that things have got a lot better since the 80s/90s. but do not hesitate to document all the things you've mentioned and your questions. Make sure they answer your questions satisfactorily. as we have since realised that we should have pushed for the right help much more. It IS out there, your daughter deserves to have her needs met, and you need reassurance and a helping hand to be able to make sense of it all. Living and bringing up a child with particular challenges is really hard at times, and can demoralise and tire you out. Like every parent you are trying to do your best and need some guidance from professionals, so do not be fobbed off. We so often were. in hindsight. The persistence will and does pay off! Our family is living proof of it: We eventually got our needs met and are all the better for it. Good luck! 

      

  • Might be worth looking up websites that address an eating disorder called PICA. It could relate to autism but other things as well.

    The possible reason the community isn't as responsive as usual is that autism related unusual eating is about sensory perception, and children might eat odd things because of their texture or character or to better understand their perceptions.

    This seems more extensive so possibly people are unsure how best to respond. I'm sticking my neck out only because I'm concerned you find yourself unable to obtain answers.

    Hope things sort out.

  • I'm impatient and until we have been to this appointment and see what is said there and possibly then go to the Dr to get further investigations...  I'm scared and worried.

    Thanks

  • I'm sorry no one has responded to you yet Modgiemoo, it's important to bear in mind that this is a very new, very small community that is still growing - so sadly there will be time where people haven't yet had a chance to respond to your message.

    It may be worth speaking to the service mentioned above and also exploring some of the larger, more established community services mentioned on our 'Other communities' page - to see the response you may get from a larger group of people.

     

  • Very disappointed, I thought of all places this would be the one to get some support and advice but obviously not.  

  • Hi Modgiemoo,

    Just going to move this discussion over to the parents section of the website, so other parents might be more likely to respond.

    And whilst I'm replying I thought I'd mention our parent to parent line, which provides telephone support from other parents. You may want to consider calling them to see if other people have beeen through similar situations, as well as the experiences people may share here.

    Here's the link about the service -
    http://www.autism.org.uk/p2p