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Advice please! Support for a mother with an Aspergers ds

(11 Posts)
ponygirl Thu 18-Dec-03 16:17:50

Hi there. I'm really concerned about a friend of mine whose ds1 was diagnosed in October with Aspergers Tendency. Her child is 4 but she's been concerned about him since about 1.6; GP and HV were completely useless and she only got him assessed at the pre-school because the woman who assesses was there to observe another boy and the playleader asked her to look at friend's ds1. HV told friend of diagnosis during her ds2's hearing test "BTW xxx has AT" and gave her no info. She was referred to speech therapist who has been more supportive and he now attends a group therapy class and apparently there will be a classroom assistant when he starts school in September.

I'm most concerned about his mother tho' at the moment. Her dh works long hours, is often away overnight; her ds2 is 12 months, and apart from sessional care at pre-school she has virtually all of his care unsupported. He's a bright boy but his behaviour is frequently very difficult; he eats very little (but is very strong), his sleep is disturbed (7 or 8 wake-ups in the night, mother usually sleeps in with him) and he needs constant supervision (far more than even most 4 yr olds). Can anyone suggest any support for her? I'd direct her here but I don't think she has the time to look thoroughly on the internet for advice: ds1 is up from 4 or 5am and sometimes is takes until 10pm to get him to sleep. She said to me this morning that she's just had enough and I really feel that she's at the end of her tether. Is there any help out there for her?

Sorry I'm rubbish at the jargon - I'm new to this. Thanks for any help anyone can give. I've had a look at some of the threads but couldn't find very much where a child is so young.

Jimjambells Thu 18-Dec-03 16:35:55

Well first she needs a proper dx! Asperger's tendency is not a diagnosis and coming from a HV is worth absolutely nothing (you may as well ask the cat to diagnose). He needs referral to developmental pead for proper assessment, and may need to be statemented.

For support the best way is to join local groups. You don't need a dx to join groups but there is a lot of support there. it might be worth checking to see whether the NAS is active in your area.

I'm not very experienced in AS, but others on here are and I;m sure they can offer more help. Tony Attwood's books are good, as are Luke Jackson's.

coppertop Thu 18-Dec-03 17:26:22

I'd definitely start by getting a proper diagnosis from a Paediatrician. From there she could get info about practical help. Ds1 is 3yrs 6mths and has Aspergers. We get a lot of help from the Early Years Inclusion Service too. I also have a 10mth old so have a lot of sympathy there! Her HV might know of local support groups too.

maryz Thu 18-Dec-03 18:19:00

Message withdrawn at poster's request.

ponygirl Sat 20-Dec-03 15:46:24

Thank you every one for this. The proper diagnosis seems obvious, but she hasn't been able to get the GP to refer her. Thanks maryz for the recommended websites - I'll search for them. It's good to have somewhere to start.

Thanks again.

twiglett Sat 20-Dec-03 15:55:37

message withdrawn

twiglett Sat 20-Dec-03 15:56:09

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ponygirl Sat 20-Dec-03 17:07:38

Yes, I think it's definitely time for bolshyness. I have the same gp and she's really reluctant to refer anyone for anything. My dh went to her for a really bad back which was at its worst first thing in the morning so he had to get up and she told him he should probably be getting up earlier anyway!

coppertop Sat 20-Dec-03 17:12:51

ponygirl - forgot to say that if your friend ever wants to talk (via e-mail) to someone going through a similar situation, she is more than welcome to contact me via mumsnet. Our AS ds1 is a similar age and sometimes it helps to have someone to rant to who understands what it's like.

ponygirl Sun 21-Dec-03 21:03:55

Coppertop, thank you so much, that's really kind. I'll mention it to her. I think part of the problem is that she feels so isolated, she doesn't know anyone who understands what she's living with. Maryz put her finger on it about believing her. I think most people think she must be too soft with him, not that he is particularly difficult. She certainly thinks so. I'll admit I wasn't sure myself at first but now, my 3 are a walk in the park next to her ds1.

coppertop Sun 21-Dec-03 22:14:37

I know how lonely it can get sometimes. Even with dh there to help I still find it hard to cope sometimes. It doesn't help much when you hear comments like "All that child needs is a good smack" or "He just needs more discipline", Your friend is very lucky to have an understanding friend like you. If she e-mails me but doesn't get a reply within a day or two, could you let me know on here? My e-mail has been playing up a bit recently and I'm hoping to switch accounts soon.

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