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Forum: Children with Developmental Delays and Disorders

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  #1  
February 1st, 2008, 12:36 AM
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Join Date: Oct 2005
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My son has not as yet been diagnosed, but from being a baby we all thought he was deaf, he did not speak at all, he didn't even babble, he went to theatre to have grommets fitted only to find his ears were dry and he didn't need them, then they did a hearing test while he was asleep by measuring brain waves for hearing sounds, it turned out he was 60 dB deaf in one ear and 70 dB deaf in the other, we went to have his hearing aid fitted a couple of weeks later and he passed a hearing test with flying colours, he was still not talking or making sounds at this point (2 yrs) speech and languge referred him to paediatric consultant with a suggestion of ASD with the same suggestion coming from nursery school, he was placed in a child development unit 2 days a week for 13 weeks. Just before starting the CDU he started talking which was a very profound moment because his first words were "I don't want to get in the bath, I want to get out." now when you go from nothing to complete and clear sentences it's hugely moving to say the least LOL. We have been to see the consultant yesterday as he finishes CDU on Monday when we have a meeting scheduled for the world and his wife to come along to and I already know the outcome from being to see his consultant yesterday, the outcome so far is he has made fantastic progress in the last 3-4 months, not enough for them to say that he does not have ASD but then he is not as bad as some others suffering from this disorder so they cant say that he has got ASD either, we go to see the consultant in 4 months time and he says if he's still dithering he's going to do a one to one test with him to find out once and for all. OK so why wait? I have waited long enough, the end of the 13 weeks was supposed to either say yes he does or no he doesn't, I know ASD can be quite hard to diagnose but please I am losing my freaking mind here. Things he does that suggest ASD, I don't know, so he lines all the shoes up and his cars and likes his room tidy to sleep, he has night terrors and sleeps appaulingly, he has his ways and I guess I'm used to them, he's my little supa dupa star, he mostly avoids eye contact, especially with adults, he doesn't react to much, but then sometimes he does.. He is a complex little boy who has speech and language difficulties but they are getting better, he does have problems with communication and is very much a loner although occasionally interacts with his peers. He is in the gray area that is neither ASD nor not ASD. He also tends to repeat alot, but then so does my older son (9) who probably has ADHD with oppositional disorder (again many meetings that are fruitless, he has it they just don't like to label here but untill he gets a label he doesn't get the correct help) I pull out my hair in annoyance at the british system!

Any input ladies?

Jay xx
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  #2  
February 3rd, 2008, 03:28 AM
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Wow, that's amazing his first words were a sentence. Your description does sound like autism to me. My son is much the same way. He appears deaf at times he just doesn't notice things going on around him when he is introverted or absorbed in something. I'm sorry your british system sucks
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  #3  
February 4th, 2008, 12:34 PM
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It can only go as fast as the system, and it's never fast enough when you're looking at a child who could be becoming more lost and it seems you can't do anything about it. With the labeling and services that way, you can't, and I'm so sorry. I just posted about having to wait three months to see a neurologist, and then the appointment was a waste for us.

There are things you can do with him at home though. There are so many books out there that can help you understand his thinking better, and you can do ABA (Applie Behavior Analysis) at home. However, you might have quicker results and less frustration if someone else does it, but when you have nothing else at the moment, you can do it yourself.

Hang in there for your little guy!
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