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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:
PeachyChocolateEClair · 12/04/2007 20:01

Hiya yummy mum

OK take a deep breath

I also have a child with AS there are quite a few on here, we can help you through this if you want. We can't take the AS away, but we can support you whilst you oearn to accept it.

The time after a diagnosis is a time of grieving, even if you knew, as we did, that it is imminent.

How old is your little boy? I ahve a seven year old ds with AS, an NT 6 year old and an ASD almost 4 year old.

Have you spoken to the NAS? They have a fab website and information line, and the local ones might send someone out to see you- they did us, she was great. you can also apply for DLA and Carers Allowance if you work below acertain number of hours a week.

jenk1 · 12/04/2007 20:12

yummymum1 sending you hugs.

i have a DS (10) who was dx,d last year with AS and a DD (3) who has semantic pragmatic disorder and most likely to get an ASD dx at some point.

This is a strange time-the time after dx, a whole load of emotions will happen to you and its important for you to take time for yourself.

please ask any questions that you want as peachy said there are a few of us on here with children with AS, oh i forgot to add i have AS as well.

Original poster
Yummymum1 · 12/04/2007 20:16

Thanks peachy.
You are right ,it is like grieving.He is 6 and i know that the diagnosis doesnt change anything,he is still the same as he was yesterday morning but i just feel so sorry for him,for what his life might be like.Have you read any books that you have found really helpful on helping children with aspergers?I have looked at a few on amazon but want to get something really helpful.

OP posts:
Original poster
Yummymum1 · 12/04/2007 20:31

Wow jenk,you must be busy!It puts things into perspective here.How is your ds at school?Are things better or worse than when he was younger?How do you find life?Have you learnt how to understand things that are confusing?Sorry,there are a lot of questions.You dont have to answer but want to understand what his life might be like .

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Aloha · 12/04/2007 22:04

Hi, my little boy has Aspergers. I think a diagnosis can help everyone in the family, as you begin to realise what he can and can't help. Doesn't mean you'll never feel frustrated, shout or be what ds calls 'a big scary were-mummy', but it makes things make sense. Also, re the upset thing, I honestly don't think that they know how to react when you are upset. It's not that they don't care - they don't really feel it themselves, and they don't know what the social rules are about expressing sympathy. But they can learn!

PeachyChocolateEClair · 12/04/2007 22:06

No the upset thing isnt deiberate- but i find it really ahrd when they dont realise.

I found autism for dummies and excellent starter, there's also a book of tips but I lent it to someone on MN- flamesparrow, she might be able to give you the reference so you can get a copy? I will have a lok though

PeachyChocolateEClair · 12/04/2007 22:08

here it is

tehres also the complete guide to asperger syndrome by tony attwood, I would start with those two- one pratical, one informative, iyswim. amazon stock both.

HTH

Aloha · 12/04/2007 22:10

There is quite a span with Aspergers. My ds tells me he loves me all the time, as it happens.

mummy2aaron · 12/04/2007 22:13

If you were a bad mum he would never have come this far so as to get a diagnosis hun. We can't be perfect all the time we just do our best and when children have special needs the job is even harder. You will both be ok give yourself time to adjust to the idea.

Jen - I didn't know you had as hun, and here is I am mithering you about my probs and you have more than enough of your own.I hope you know what a special person you are - you have helped me a lot.

luckylady74 · 12/04/2007 22:34

hi yummy, i have an as 5 yrold and he was dx last june. i promise you will feel better - it takes time and it is exactly like grieving at first i was angry, despairing, couldn't bear being around nt 4 yrolds, ate a lot and couldn't sleep , and argued a lot with dh.
i feel recently we've turned a corner and with the help of a pysch the paed referred us too and a therapy programme we organised, we feel like we're addressing some of the behavioral issues and at the very least accepting our son and therefore handling him better.but it takes a long time.
please don't beat yourself up for the way you've been in the past -you were just responding to him in a perfectly normal way and were not to know he wasn't an average child -just thank god that dx has happened now. i spent 2 years from when his behavior really kicked off - blaming myself for my ds's behaviour - why did i have twins and ruin his life - i didn't talk to him, why hadn't i noticed he didn't point or talk to his peers - but then really why would i have noticed. i shouted and used the naughty step to no avail - now i know why!
i really hope you find all the books useful -i found searching past threads on here invaluable and had very patient help from all on here. there is hope - we've had our first calm holiday in ages!
big hugs - first i've offered on here -

coppertop · 12/04/2007 23:23

Yummymum You haven't failed him at all. AS can be so subtle sometimes that it's not always easy to spot. IIRC the average age for a dx of AS is around 7yrs for that very reason. I'm convinced that if ds2 (AS) didn't have an older brother with autism he wouldn't have a dx yet either.

You haven't failed him at all. Be kind to yourself.xxx

onlyjoking9329 · 12/04/2007 23:24

Hi and welcome, i don't have any children with aspergers thou i do have three with autism and i know how hard it is getting the DX, but the DX will help you to get the best support for your son.
i have heard that the tony attwood book is very good.

kitegirl · 13/04/2007 10:57

YOU ARE NOT A BAD MOTHER
YOU ARE NOT FAILING YOUR SON

welcome to the board. there's lots of us here, all doing the best we can to help our children, just like you!

Original poster
Yummymum1 · 13/04/2007 18:30

Wow,im overwhelmed with all the support from you all.Thank you SO much for all your kind words and reassurance.It really helps to speak to other mums who know how it is as for so long you think it must you as your child isnt responding in the same way as their friends.I know I cant change the past but i can change the future and have started as i mean to go on and make things better.You are right aloha,he will frustrate me still but at least i might be able to understand his way of looking at things.
Thank you again everyone.I think i might become a regular on here for advice etc.Thanks for the recommendations on the books peachy.As it happens they were the very 2 that i had thought looked really good.I hope you have all had a good day

OP posts:
PeachyChocolateEClair · 13/04/2007 18:35

Yummymummy

Can you e-mail me? peaches and cream 04 at bt internet dot com ? We have a small support group on Yahoo of the MN SN parents, you'd be very welcome indeed.

jenk1 · 13/04/2007 19:41

yummymum1, no probs answering any questions at all.

DS is in some ways better than he was when he was younger as to his tantrums etc, we have learned what triggers them and what makes him anxious and that has helped enormously.
As for schooling im afraid i dont have a good story to tell, lots of children with AS manage in mainstream with support but DS has been out of school for 18months, his anxiety and the fact that he was bullied got too much and he became ill and was signed off medically by CAMHS, we are hoping to get him in an independent school this year.

As for me growing up, well for girls it is different to boys having AS because girls are very clever at appearing NT and blending in, certainly i was.

A lot of things were confusing for me growing up, i never understood when i had upset someone through my words or actions BUT since i haved been DX,d and read up on tony attwoods book (brilliant definately buy it) and i have regular counselling from a psychologist, it has helped enormously.
The fact that your DS has been dx,d so young is really good cos you will be able to help him enormously with regards to helping him understand his emotions,anger,anxiety,socialy acceptable things,whats not acceptable etc etc.

There is so much information out there now, to help people with AS/ASD.
Have you been in touch with your local NAS branch? cos they will send you all sorts of info out and you can go on courses which are really good, i can recommend the Help! course which is for parents of newly diagnosed parents, helped us enormously, but i applied most of it to me!!!!!!

HTH

jenk1 · 13/04/2007 19:42

help course which is for parents of newly diagnosed children i meant to say!!!!!

Original poster
Yummymum1 · 13/04/2007 20:03

Thanks peachy,i will email you but prob not tonight as i feel a bit overwhelmed with it all,but i would def like to be involved.
Thanks jenk for your answers.Im so sorry to hear about your son.That must have been very distressing for you all.I hope things improve for you all soon.
I have tried to help ds tonight by making faces in the mirror together of different emotions to try to help him read people better.Actually i feel that things are already better between me and ds just by looking at him in a diff way and i feel for the first time since he was born that i am falling in love with my son all over again(in a mother/son way!)and discovering a new person which will be challenging but exciting

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Oxygen · 14/04/2007 20:29

Yummy - the book that Peachy lent me is excellent, would you like me to send it on to you (if that is ok with you Peachy). I have been given book vouchers, so will go and buy my own copy - it seems right that it should help someone else iyswim.

Oxygen · 14/04/2007 20:29

Oh, tis Flamesparrow here btw

Original poster
Yummymum1 · 14/04/2007 20:37

Thanks oxygen,that was really kind.We actually went ahead and ordered it from amazon yesterday so it should be here next week.From the look of a couple of pages on the web it looks really good.

OP posts:
Oxygen · 14/04/2007 20:40

I am still 50/50 with whether or not DD is AS, but even if she is not fully, she has enough traits for it to be a godsend.

You suddenly understand so much about why they are like it, and how to handle so many situations.

Original poster
Yummymum1 · 14/04/2007 20:47

Yes i think that is it.When i was at my wits end with ds and rang the hv for help and referral etc it suddenly was real that he may actually have a dif outlook on the world and i was suddenly able to calm down and accept that there may be some things that he just cant help and i just have to accept that.

OP posts:
Flamesparrow · 14/04/2007 20:58

It is a slow process for us to remember why she's being like she is (the meltdown because I just chucked all the furniture in the dolls house because we were in a rush and just needed it away... she needed it done in order) - as the sobs started and I could see the distress, I promised faithfully that when she got up it would have been put right for her, and she calmed down.

I'm hoping that with time, and reading more books like that it will become more second nature to me and she won't have to get distressed for me to remember

MN has been a great source of support for me, peachy especially is my angel.

PeachyChocolateEClair · 15/04/2007 12:48

Flame hang onto it and just pass it on when someone needs it, that would be wonderful! Good to see its making a difference.

Yummy, have you come across this place? www.bibic.org.uk? Not for everyone, has been a double Godsend to us.