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Need some help and guidance with NOT being diagnosed with Autism.

4390evans

Hi everyone, 

Im in a bit of a panic here so I am hoping someone can help me.

Ive got a child of 2 who at 6 months old went through major heart surgery, she was a normal smiley happy baby. When she came round from surgery she was still very groggy and when I went to touch her she recoiled back in horror and there was something amiss for a while after that. I put it down to her being traumatised from the surgery and the pain afterwards. We had to hold her back doing alot of things a normal 6 month old would be doing at that age like rolling, sitting up etc.... I think she didnt trust me for a long time afterwards and its took us a long time to build that bond again. I have always known she has been a bit behind and I do blame the op, but she has excelled at everything like walking, crawling, getting up stairs eating etc the only thing that is a bit off is her eye contact and talking. She is nearly 3 and can say 5 words. She knows what she wants and will take you to it but she is just refusing to say most things. Yet she will make sound like words. Her eye contact is getting better. She is in daycare for 4 hours a day and has lashed out twice bit and pulled hair. She understands what you say to her, mostly. She attempts to get heself dressed. 

So the daycare tried to say she had trouble eating (rolling stuff round in her mouth, or holding food in there before swallowing) we had someone look at that as we have never experienced this problem with her and the peditrician agreed with us there was no problem at all.

We were recomended to go see another peditrician at the hospital we went to the appointment the other day and at this 20-30 min appointement he is wanting to get her looked at for Autisim which I think is ludicrous! All because she didnt give him eye contact?! Over the next 3 months he will be sending people out to assess her and report back to him. 

I felt he wasnt listening to me when I was saying that she was just delayed and I needed help for that. He was more concentrated on Autisim. 

I need some help to fight this as I dont know where to start, I know my child has not got Autisim, she is slow but does not have Autisim. Im going to fight this all the way but in the mean time I need to know what help I can get and who from for a child who is delayed. The peditrician said he cant offer me any help till he gives a diagnosis, is this right?

So sorry for the long post guys xx

Parents

  • Oh, I agree entirely, new people couldn't possibly know that their questions have been asked before, and answered, and debated...

    I've tried reading through back threads and their posts, and there's lots of stuff there that I found valuable when I was looking for things, but I was finding it more by accident than design. Sometimes, just knowing that there is variation of opinion can be helpful when it gives me a choice of which side sounds best to me. Bob mod previously said that the way the site is used now has moved significantly away from its' initial conception and use.

    That's why I thought that something like FAQs might work best - when we see a recurring theme, links to past answers, and the variety of people who posted them can, I think be comforting.

    My main thought, though, was that I think that Bob mod's suggestion of a consultation that includes us is a great one, he recognises that times, and needs, are changing, the site probably needs to change too, and maybe this would be one way to avoid some of the missunderstandings about us, and the resulting conflicts.

    In the case of this thread I, like R'socks, thought that things had gone pretty weird pretty quickly - I thought I'd lost the ability to read! Reading past posts was one of the things that helped me understand the way we speak, and helped me to feel comfortable with expressing myself.

    I hate to think that someone who we could help might, or has, quit the site just because of these issues. I'm sure that none of us want or intend any such thing to happen. I was looking for a way to prevent our trying to help being misconstrued, as it appears to have been in this case

Reply

  • Oh, I agree entirely, new people couldn't possibly know that their questions have been asked before, and answered, and debated...

    I've tried reading through back threads and their posts, and there's lots of stuff there that I found valuable when I was looking for things, but I was finding it more by accident than design. Sometimes, just knowing that there is variation of opinion can be helpful when it gives me a choice of which side sounds best to me. Bob mod previously said that the way the site is used now has moved significantly away from its' initial conception and use.

    That's why I thought that something like FAQs might work best - when we see a recurring theme, links to past answers, and the variety of people who posted them can, I think be comforting.

    My main thought, though, was that I think that Bob mod's suggestion of a consultation that includes us is a great one, he recognises that times, and needs, are changing, the site probably needs to change too, and maybe this would be one way to avoid some of the missunderstandings about us, and the resulting conflicts.

    In the case of this thread I, like R'socks, thought that things had gone pretty weird pretty quickly - I thought I'd lost the ability to read! Reading past posts was one of the things that helped me understand the way we speak, and helped me to feel comfortable with expressing myself.

    I hate to think that someone who we could help might, or has, quit the site just because of these issues. I'm sure that none of us want or intend any such thing to happen. I was looking for a way to prevent our trying to help being misconstrued, as it appears to have been in this case

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