Active discussions

Please or to access all these features

Talk
SN children

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

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 · 15/04/2007 12:50

Me? Angel? PMSL- wish you'd convince MIL of that LOL- convinced I am the Devil for sure.

flyingmum · 15/04/2007 18:26

There's a really sweet book called 'All Cats have Asperger's syndrome' which I think is written for parents. I found it at Christmas and bought it for my chap (who is now 12) cause he likes cats and knows he is an aspie. One thing I wish I had known is that all aspies and ASDs ar different. I read some books (rather ancient ones from the library) early on and frightened myself to death. I think there has been a growth of information and literature recently and and people moving away from the association of autism with savant or pooh smearing, furniture ripping behaviour which characterised some of the media coverage of autism in the 70s and early 80s.

We have good weeks and bad weeks and we used to be governed by my son's tantrums (which were very loud!) but over time things have got better. He used to repeat stuff endlessly but I noticed that he just doesn't do it anymore. He's pretty good with change but every now and again gets a bit wobbly about stuff. I was very busy yesterday and so he made he and his brother's tea (scrambled egg) from scratch with no help whatsoever. He also made his bed with clean bedding (sheets, duvet cover, etc) all by himself the other day with no paddy (he's very very dyspraxic so this is a major thing)so they do progress and it will get better.

Best of luck

Original poster
Yummymum1 · 15/04/2007 18:52

Thanks flyingmum.I will have a look out for that one.Your ds sounds amazing!I cant wait for the day when mine can make their own tea and change their beds!!!You say your ds knows he has aspergers.What age did you tell him?

OP posts:
Original poster
Yummymum1 · 15/04/2007 18:54

Have had a quick look at thta site peachy and it does look like it might have some good stuff on it.There is certainly a lot of info out there and so much support from all you MNetters!Thank you again all of you,it means so much

OP posts:
PeachyChocolateEClair · 15/04/2007 19:40

the thing I mentioned earlier

Seriosuly, i'm not going to pretend AS is easy always, indeed my ASD child is easier in many ways as he doen't have the cunning / anger that his older sibling has (I know that may change! Hope not though)
there are enough threads on here when DS1 is having a meltdown and he is a danger to himself and others then, though I have learned to restrain him now.

if you consider bibic, give them a call- what they fail to emphasise is that when you amke contact they get an expert to call you and do an hour long free interview to see if they can help, then they leave it to you to decide. Both mine are registreered there, and I worked alongside them for a short while in my previous life. They also help a lot with funding, if you ask!

flyingmum · 16/04/2007 18:05

Thanks Yummymum - I think he's lovely most of the time and then there are the other times . . .Frankley he can drive me absolutely potty. To which he usually replies "now mother, your getting stressed and winding me up" I dreaded telling him he was an aspie but it was really easy. I had told him in year 5 about his dyspraxia because that was when he really noticed he was very different to others and got really down about school work because he just couldn't write anything and anything he did do was rubbish. Then in year 6 we decided to go down the special school route and he had to do trials and things at various independent special schools and he also had to go to various assessments. When I told him about the first school we looked at I said they took people with dyslexia, dyspraxia and aspergers and he said "oh is that what I've got" and I said "yes" he said "thought so" and that was that. I had been dreading it and he just accepted it. Hey ho!

Mousie · 20/04/2007 21:58

this thread makes me want to cry.

my six year old is unusual - and difficult and this week going back to school has been a nightmare. I have had her assessed and she doesn't come out as aspergers - though scores highly on some factors. I am confused as I was sure she would hit the box - not that I wanted her to, it's just I wanted a reason for all the stress and trauma we are experiencing. I have spent years feeling it is my fault as an impatient parent that I can't get a calmer life going at home for us all. I supposed I thought a diagnosis would let me off the hook a bit. in my gut I know there is something there but have no idea where to find help or my next port of call. can any of you wised up people give me any suggestions. hope I haven't hijacked this thread too much. sorry.

CoteDAzur · 22/04/2007 18:27

Yummymum - There is a very good book called The Curious Incident of the Dog in the Night Time that was number 1 on bestsellers' lists several years ago. I think it would be a great read for you at this time, as it is written in the voice of a kid with Asperger's Syndrome, and hence illustrates brilliantly how AS people view the world.

My personal experience with AS is only through a friend who has been diagnosed a while back. He is a very successful lawyer. I wanted to tell you this to put your mind a bit at ease about what his future is going to be like...

Hugs and warm sympathies...

Original poster
Yummymum1 · 23/04/2007 13:57

Thank you cotedazur.We are already reading it!
I think you are right it will be insightful and will help us understand the way he works a bit better (hopefully!)
Thank you for your ray of hope re friend.I am sure ds will be ok as he seems to be learning the "right way" of things and as the paed said a lot of people with as do go on to become fantastically good at something which is great.It is just socially i worry but even that doesnt seem too much of a problem at the moment

OP posts:
Original poster
Yummymum1 · 23/04/2007 14:05

Mousie,I totally understand how you feel and am sending my sympathies to you.
When we started out on the route to diagnosis the school nurse came to see me and asked about ds.When she had got a picture of his ways and behaviour she said she suspected aspergers but some of his behaviour went against it.
Because she had mentioned as i looked it up and found that it did describe ds very well but there were many areas where it wasnt him.But since that day i have been much more accepting of him as he is and i think you should take comfort (if you can call it that)from the fact she does score highly in some areas and take it from there.If it was me i would read the asperger books and apply the bits that are relevant and you may see a whole new side to your daughter and a calmer life knowing that there are some things she does that really wind you up but that she cant help!Good luck to you all and this site is so supportive i'm sure you will find the help you need!

OP posts:
CoteDAzur · 23/04/2007 16:54

yummymum - here is an old article from Wired magazine that you might find interesting:

The Geek Syndrome

Yes, AS people are notorious for social difficulties, for example, because they can't understand why people get pissed when they make totally factual comments that the other person finds insensitive. But that does not mean they will not have fulfilling social lives!

That guy I told you about is actually living with a brilliant and stunning girl who moved from Canada to London to be with him. They were introduced by a joint friend, through a mail. They e-mailed eachother for several months and then met in person. My friend said the e-mails at the initial stage of meeting someone was much easier than meeting in person.

Back when AS people were called "nerds" or "geeks", I think there was perhaps a bit less stigmatization. Everybody understood they were a bit different than the rest, would not fit in, would rather go to the library than a social gathering, but that was OK. They were not considered inferior or suffering from a "condition" with a name, just DIFFERENT...

Original poster
Yummymum1 · 23/04/2007 17:07

Very interesting cotedazur.Thank you.You have reassured me greatly today as the Tony Atwood book depressed me over the weekend with its gloom about the teenager and young adult with as and all their difficulties meeting girls.I just want him to be happy and fulfilled and with a family (but that is what I wantfor him)but if he is happy on his own then that is fine.
Its hard not to worry though isnt it?

OP posts:
KateF · 24/04/2007 17:06

Mousie, I feel for you as I have exactly the same with dd2 (nearly 6). I am sure she has mild AS but I can't get the school to refer her despite her difficulties. They are sure it's a "home problem". Am thinking of having a private assessment done as I have seen mentioned on MN but don't know how to go about it.

AttilaTheMeerkat · 24/04/2007 17:12

KateF,

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.

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.

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

You need a diagnosis first and foremost.

KateF · 24/04/2007 17:26

Thanks Attila - I will make an appointment asap. This has really gone on long enough and I just want to be able to help her cope with life better. School have said " even with a diagnosis she won't get a statement and so no extra help" . I think she may be dyslexic too poor mite - I don't want life to be this hard for her

AttilaTheMeerkat · 24/04/2007 20:53

Hi KatieF,

Re your comment:-
"School have said even with a diagnosis she won't get a statement and so no extra help".

How do they know exactly?. That's a bloody defeatist and unhelpful attitude from the school.

I would get a paed on board and then apply to the LEA yourself for the Statement. Do not let school have anything to do with the Statement application. You as the parent have far more power than they do in this regard as you can appeal the decision if the LEA say no. School cannot.

BTW IPSEA are very good in this regard and you may want to look at their website too which is www.ipsea.org.uk.

HTH and good luck!
Good luck.

KateF · 24/04/2007 21:11

Atilla-thanks for all the info. Example of dd2 this evening: reading an ORT book which parallels the Goldilocks and the Three Bears story. Question at the end of the book asks why the story is like Goldilocks
dd2: "It isn't"
Me: "Why do you think that dd2"
dd2: "Well, Goldilocks isn't a dog and she eats porridge not cake and there are bears not people and it's a cottage not a tent......."
Me: " Yes Darling (aaaargh)"

Dinosaur · 24/04/2007 22:04

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Mousie · 26/04/2007 12:26

thanks for support here. KateF. I know how you feel. I am going to get a couple of the books and do some more reading. Today has been truly grim, yesterday was fine. It is such a cycle I am not quite sure of anything. I had her privately assessed which was expensive and not totally helpful. I sort of wished I had gone NHS route but hven't foudn any openings - she can pull it together quite well for outsiders... and it becomes hard to trust my gut.

Mousie · 26/04/2007 12:47

YummyMum - just one thing and hopefully this will be answered in the books I intend to order today. When my daughter is passionate and obsessed about something do I go with it, or try and rationalise her out of it.. today she was going crazy because I saw that she had got herself dressed and it was meant to be a secret. She told me I had to forget I had seen her. Stupidly I decided not to agree with this and told her I could pretend I hadn't seen her but I couldn't forget that quickly. She was inconsolable for ages - It would have been far easier just to agree to forget but somehow I didn't want to endorse her way of ordering me around/ seeing the world, so I didn't. and got hell.
I don't know how I am meant to respond to much of her behaviour. she gets so angry at the tiniest things - hitting, screaming, meltdowns.. if things go slightly awry..

KateF · 26/04/2007 17:17

I know exactly what you mean MOusie. I tell dd2 that she cannot rule the whole family with her obsessions so she can't make us all late for school etc. but otherwise I try to be sympathetic about what is bothering her. When it takes half an hour to find a pair of socks that "feel" right I must admit my sympathy starts to run out!

Mousie · 26/04/2007 17:27

yes it is quite exasperating. the school run is a thing i dread - mainly because it is a longish walk on which anything can happen. and does

caroline3 · 26/04/2007 20:19

Hi just wanted to add my support.

My ds was diagnosed last October aged 6 (now 7). I always knew something was not normal about him however.

I was very upset about things at first and found this site mega helpful. I also read several books ordered via the NAS website. Things have calmed down a lot now and after A LOT of aggro with the school ds is getting a lot more support in the class room and also three social skills sessions each week. It was only when I started getting assertive (and a bit aggressive) that things started happening. I have found that I have had to be very pushy and annoying to get anywhere. You just need to stop being nice and worrying about pissing people off at school. No one else can fight for your kid after all.

The social skill sessions have helped a lot and also I think I have started to accept DS as he is, part of this is not expecting him to be like all the other kids in his class. Telling other parents has helped me a lot as well. It is a long road and I know there are going to be a lot of problems along the way but at least I think I can see the way forward for the time being at least. Keep posting, the mums here are absolutely brilliant!!

Original poster
Yummymum1 · 26/04/2007 22:00

Mousie,that sounds just like my ds!!
Before we had the diagnosis and i just thought he was being difficult i would have done the same as you did today and would have suffered the consequences!!
However knowing what i do know i tend to go along with his foibles and peculiarities as i guess at some point he will grow out of them and it wont be such an issue.I know that in their place there will be other things but having cut him some slack and chilled out about a lot of things, our home life has become so much calmer and a nicer place to be!

OP posts:
Mousie · 27/04/2007 06:20

my slight problem is that dd is immaculately behaved at school. she isnt' briliant in any sense. her motor skills are atrocious, maths is a foreign language to her etc.. but she is very well behaved, in awe of discipline, etc etc,, so she causes no trouble and everyone thinks I am mad to struggle with her. at home she is often a total nightmare.

thanks for support, so if I go to my doctor and try and get her assessed again on NHS what do I say? who do I want to see first of all? I has been behaviour specialists and health visitors up to now...