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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Help!DS just diagnsed with aspergers.Feel like really bad mother...

68 replies

Yummymum1 · 12/04/2007 19:57

as he has always been a difficult child and has constantly tested me and the boundaries.I have always been aware that he is different to other children but nothing i could really out my finger on.As a result tiredness,anxiety as to what was wrong(is he a psychopath,why doesn't he care i'm upset etc)and just being fed up with battling has meant i've not always been as patient or understanding as i could have been.He was diagnosed yesterday (age 6)and i've now done some reading and found they have low self esteem and need plenty of reassurance they are loved,both of which i feel i could have done better at!Is it too late to turn it around now i understand him more?Will it all be alright?I feel awful that i have failed him and confused him more than he already is.Need some reassurance please from anyone in similar sit.Thanks...

OP posts:

Mousie · 27/04/2007 06:28

oh yes and school has no special needs provisions for aspergers/ dyslexia etc... so what would I have to do to make things bette for her out of school (we can't afford to send her to a private school). and can things really help these children??
sorry rambling, early morning distress...

AttilaTheMeerkat · 27/04/2007 07:03

Hi Mousie,

I would visit your GP and ask that your DD is referred to a developmental paediatrician as a matter of course. She may also be referred to a CDC - child development centre.

The scenario you describe about her behaviour being good in school but not at home is exactly the same as a Mum I know of whose child has AS (also with no special needs support of any kind). Many such children tend to bottle it all up during the day and can just about cope with their frustrations but when they leave school take it out on their nearest and dearest.

Would not count on on the school to do anything anyway - it will need to come from your good self. This will certainly be the case if you feel your DD needs extra support (e.g a Statement of special educational needs) in class. You as the parent can write to the LEA in question to ask that your DD is assessed with regards to getting a Statement.
I would seriously consider this option as a matter of urgency.

The NAS (National Autistic Society) is also a good point of reference to check as well.

Mousie · 27/04/2007 11:11

i know school are very unliekly to help. just wondering what help i can getin place out of school. will go and see her gp asap. thank you. i take it i should go on my own and not take my daughter along.. at risk of further exciting and confusing her

KateF · 27/04/2007 11:21

Mousie - I have just bitten the bullet and phoned my GP. He is going to phone me later to talk about dd2. School are obviously going to be useless, they have given her a sticker chart fgs - she is not motivated by stickers at all and she's been there nearly 2 years, you'd think they might have worked it out by now . She is refusing school again and I am at the end of my tether.

Mousie · 27/04/2007 11:27

kateF. you sound like me. it is agony when life is hard and then some days are ok and i begin to think maybe i am over reacting, imagining it, that all children have hard days. but in my gut i know i am right. let meknow how you go (shall I cat you?) I am trying to get through to my gp now - always engaged... good luck. thanks for all support here. has cheered me up and also encouraged me to get cracking on some course of action other than pulling my hair out and crying down the phone to my dh (who is trying to work) and thinks I am over reacting. He obviously doesn'tget to spend as much time with dd

KateF · 27/04/2007 12:03

Mousie-I'm not set up for the CAT thing but please feel free to email me on catherinefagan at ntlworld dot com.

Original poster

Yummymum1 · 27/04/2007 13:23

Hi Mousie.Have you managed to get throught o gp yet?
In our case i rang the health vis to ask for help with ds as i felt we had no relationship because he was so difficult.and also i wondered if he had some sort of autistic tendency.She then referred me to the school nurse who came out to see me alone and then she referred me to the paed specialising in these cases and then we got the diagnosis!!It is difficult as you know something is not right but it is not obvious enough to be easily spotted esp at school.DS is great at school and at parents eves it was as if they were talking about a different child!!When he came home he was horrible!!
I did mention my concerns in his first yr and the special needs person spoke to his teacher but they didnt feel there was anything too wrong so that was that.Its hard but you have just got to keep on till you get it sorted.Good luck!

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Mousie · 27/04/2007 13:44

yes i have an appointment with doctor monday. i have had lots of contact with health visitors over the years but generally was suggested i took parenting classes rather than anything with her.. which is fine up to a point. it is such a vicious circle with her challenging me so specifically. she is definitely worst with me than anyone else. so it is gp first - ask for developmental paediatrician and go from there. you are right at school it is hilarious as they talk about this conscientious, docile i. they keep assuring me her fine motor skills will come.... they haven't yet.. and her friendships are strained and not really functional (compared iwth my younger ds who is much more social and at ease. it is all very painful to watch. support here great by the way

KateF · 27/04/2007 16:19

It's like we're all talking about the same child! I had to take dd2 to school with her uniform in a bag today because she would not put it on but apparently once I handed her over she was quiet and well behaved all day. GP rang me back but is taking the line that if the school are not worried there's not much needs doing . Anyway he agreed to see her next week so I shall try to be firm and insist on a referral.

AttilaTheMeerkat · 27/04/2007 18:03

Hi Kate,

Re your comment:-
"GP rang me back but is taking the line that if the school are not worried there's not much needs doing . Anyway he agreed to see her next week so I shall try to be firm and insist on a referral".

If you ask me your GP is talking out of his behind, certainly though some schools are completely useless when dealing with such children who have difficulties. The school are not "worried" simply because she is compliant. School will therefore never refer but its down to you to get her referred onto someone who knows more about these issues. As her Mum you know there is something wrong, don't let your feelings of unease be overridden or talked over.

You certainly need to insist that she is referred to a developmental paed and do not take no for an answer!!.

You are your child's best - and only - advocate. Never forget that.

Mousie · 27/04/2007 18:22

a slight twist here - how can you work out whether a child is dyslexic, dyspraxic, autistic or has aspergers - there seems to be quite a lot of overlap from what i can see. i feel quite helpless faced with all the websites and literature. am going to be very firm with my doctor on Monday and insist on something. what i need most though is guidance on what i can do to make her life happier and mine easier. improving her performance at school wouldn't hurt too, but that is a bit too competitive mummy... but it is hard having a child who can't do what everyone else's children seems able to do. maybe her compliance is her worst enemy in a way...

KateF · 27/04/2007 18:23

You do a good job of putting some backbone into people Attila . You are perfectly right of course, no-one knows her as well as I do and I have medical training too (not practiced for years but still...)I have been fobbed off for nearly three years now and t's not going to happen any more. My worry is though that she'll behave angelically at the doctors and make me look a fool.

Aloha · 27/04/2007 18:39

You don't need a statement to get extra help. My ds is on school action plus, which means he has more hours of classroom help, plus the senco and his helper who has experience of Aspergers work very well with him in the classroom. Children with Aspergers can be infuriating - the 'forget you saw it' thing sounds like my ds! He is going through a phase at the moment of being very stressed and upset by having to make the tiniest decision - eg to have chocolate or strawberry ice cream in a cafe. And not only must I choose for him - which is nerve-racking! - but I must order without his hearing so it is a true fait accompli when the ice cream arrives. It's so mad!

KateF · 27/04/2007 20:54

Is the choice thing typical of Aspergers Aloha? dd2 is incapable of choosing so much as a pair of knickers from her drawer! I have to help her narrow things down or give her a choice of two. When her teacher sent her into the library to choose a book she came home in such a state saying she didn't like her book but she just grabbed it so she could get out . Teacher has since been very good about helping her with library day but it's an example of something she has difficulty with which would not necessarily be noticeable by the school.

Aloha · 29/04/2007 19:50

I'm sure the choice thing is part of ds's Aspergers. He insists not only that I or dh make the choice for him, but that we do so he can't hear us ordering (ie vanilla or strawberry ice cream) or telling each other to, say, get his green t-shirt. He clamps his hands over his ears and looks positively panic stricken.
ds also flaps his hands about and sometime runs in small circles, like a dog
I wouldn't say my ds was badly behaved or out of control or anything remotely like that. He can be very tricky, but that's because of stuff like his irrational fears and inability to choose, his conversations which can be more interrogations (exhausting in the extreme) and his singleminded focus and lack of social graces - ie dh will say, (ie) 'Look ds! Look where a moorhen has made a nest here!' and ds either just carry on with what he was saying before, or say, 'no, i'm not interested thank you'. It can be very dispiriting.

KateF · 02/05/2007 21:28

Mousie-how did you get on? My GP took about 30 seconds to decide to refer dd2. Apparently there is no developmental paediatrician locally so I think we are being referred to the Child Psychology service. Partly I am relieved that dd2 is in the system now and that I have taken the first step but I also feel really sad because I have to accept that she is not going to "grow out of it". Hope your GP was helpful too.

Mousie · 03/05/2007 23:33

hello. exactly same for me. gp was great - listened to me blather for a few minutes and then said he would refer me to the right paediatrician, no sense in which he didn't believe she had "issues". had seen him previously about digestive issues for her so this was in some ways a natural follow on. she has been complaining about tummy pains for the last year or so - mainly i think to try and get out of going to school but i wnated to get it checked out nevertheless.
so the ball has started rolling. like you feel scared and worried by what this means - and the fact that it is real, ongoing adn chanigng, not just a phase i am imagining. what i really want to know is not so much what she has got, more what we can do about it...
at the moment she is obsessive about me not seeing many many of the things she does. we are in separate rooms most of the time as a result which does have its advantages...!

Original poster

Yummymum1 · 10/05/2007 11:06

Do you think that the reason i am feeling totally run down,tired,emotional,everythings too much, no energy etc is due to the asperger dx of ds recently or nothing to do with it at all??
I have an appt to see dr tomorrow as i feel so miserable and its not like me at all.I have been feeling like this for several weeks now and enough is enough!!
I just wondewred if anyone who has had child dx felt like this or if its just me.
Going out tonight with a newly formed support group for people with the same for pint and chat.Hope i dont cry all night!!

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