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A comment Jimjams made has really got me thinking

(29 Posts)
Blossomhill Sat 23-Apr-05 20:42:44

I can't even remember where or why she had posted this comment but it was along the lines of that a pead. she had seen said it was the parents with HFA/AS kids that suffered the most stress. The reason being that there children could do everything that the mainstream kids did but obviously were "different".
Now again sorry if that isn't exactly what you said Jimjams but it has made so much sense to me and I keep thinking about it.
Dd doesn't have either of those dx but is along the same lines of language disorder/communication disorder that type of thing.
Well we were at a party today and I was thinking how true the comment was. I see my dd as being so close to being nt but just not enough, she doesn't seem to fit IYKWIM
At this party she was trying so hard to play with the other kids but was just acting slightly different and I think only I really noticed.
I don't even know if this makes any sense but thought I'd post anyway.

Merlot Sat 23-Apr-05 20:52:35

I think IKWYM Blossom - the phrase `when two worlds collide' springs to mind

My little ds2 is too young for us to really know whether he will be in Mainstream schooling or a Special School. But my thoughts are like this:- when we socialize with children who have special needs then I feel very safe and secure (and relatively stress free), it is only when my son is in social situations with other children all of which are NT, that the reality (and stress) of it all comes crashing home.

I'm guessing here, but if your child has ASD and is in Mainstream, then they are so near (to being NT) but so far, iyswim and that must be the permanent torment?

rivers Sat 23-Apr-05 21:03:38

This comment had really stuck in my mind too. My DD has a tracheostomy and cannot speak but is also NT. I also feel so secure when with others that have children with SN, as no one stares at her and just accepts her as she is. I am dreading her starting at MS school as it just seems to show up her differences and like Merlot said it is like we are so close to just fitting in but so far. Can't believe you raised this topic BH as I had just been talking about it with my DH!

LittleNjataNoMates Sat 23-Apr-05 21:12:48

I think its even harder for the mum than for the child. You feel every little possible hurt for them so badly. I know I feel so upset when my lads are ignored or just not fitting in, I want to bash all the other kids over the head and force them to make my kids the centre of their world!!!!! Whereas my lads dont even notice and wouldnt care if they did. So thinking about it, they are much more lucky than, for example, a child who is aware of the differences. That must be so upsetting and I feel awful for anyone in that situation.

onlyjoking9329 Sat 23-Apr-05 21:14:34

tis a tricky one this i have twin girls with asd in special needs school and one son with asd in mainstream, when the girls meet up with there school mates its brill really comfy and safe and all the parents are great and my girls love school, with my son i always feel he is the odd one out at school and IF he spends any time out of school with his school mates he is noticably different, he is not aware of any differences thankfully and he does benefit from being with nt kids, but i know there will come a time when the differences are too much and he will move to his sisters school, i think its like this.... we all tend to choose to spend our time with people like ourselves where we can understand each other and feel that we belong i sometimes wonder if i am being unfair to my son.

Blossomhill Sat 23-Apr-05 21:28:08

I had a long chat with my mum today and said I honestly feel like buying a huge mansion somewhere on a Scottish Island and locking ourselves away into a secure world where dd doesn't "have" to conform. I then said to my mum that as I won't always be here dd needs to learn to stand on her own 2 feet.
I also find when I am around other little girls the same age it is a painful reminder and almost heartbreaking at times.
Dh and I have both said we wouldn't have dd any other way then the eccentric little girl that she is. I just wish the rest of the world felt the same
Sorry I really am not feeling sorry for myself. Just very sad that life is going to be hard for dd!

LittleNjataNoMates Sat 23-Apr-05 21:35:38

oh, B! TOTALLY understand you! Of course you're sad - she's your precious child! It's not feeling sorry for yourself to be sad for her!

I'll bring dh & lads & come to remote island with you.... xxxxx

Blossomhill Sat 23-Apr-05 21:38:29

Yes please LJNM xxx
I think I know you from another site. I was K?

rivers Sat 23-Apr-05 21:45:27

I don't think you are feeling sorry for yourself at all BH, it is one of the hardest things in the world when you think of the future for your DD and you know it is going to be tough. I wish more than anything that DD could fit in with other children and I wish I could protect her from the time when she realises she is diferent from others. I suppose all we can do is be there and support them through it all and you sound like a great mum and a great support to your DD.

TheRealMrsF Sat 23-Apr-05 22:12:29

blossie- i have the same thoughts too......i will not be on here much tonight....but will catch u soon!!!!

Jayzmummy Sat 23-Apr-05 22:34:22

I think i may have retold this before on MN...not sure but here goes....

When we were at BIBIC we were with another family who had the most beautiful daughter. She was a little princess in everyway...big blue eyes, lovely blonde hair that fell in the perfect ringlets. She was non-verbal and had severe Autism.

I sat one lunchtime chatting with her Mom.....all the time I was thinking to myself "bloody hell I am so lucky...J doesnt have half the problems that your daughter has....J can ask for a drink when he wants one...your daughter doesnt even know the difference between night and day"....infact I was feeling rather emotional and truely believed that I shouldnt have been at BIBIC in the first place.J's problems didnt seem important when he was stood next to this little angel who really was so very unaware of her surroundings.

The next day we were just about to leave to head home when the mother approached me and said this....." Your life is 10 times more difficult than mine. Everyone can see immediately that my daughter has problems....but with you ...they look at your son and think what a brat. I would never be able to cope if my daughter was like J, I dont know how you do it."

So I guess that yes we do have it more difficult when trying to get our childrens educational requirements met or when trying to fight for dx....our children are percieved as being little sods....all I can do as a Mom is offer J the best I can and in the meantime try and educate those around us that ASD takes on many forms and affects children in so many different ways.

Glad your back Bloss.xx

Abacus Sat 23-Apr-05 23:46:24

Blossomhill, my heart goes out to you!

I know EXACTLY how you feel. It is so hard when our children look normal - they call it the "invisible disability" and my goodness it is!

The stress I have suffered and my DH and DD is unbelievable - we had a badly brought up child - we did not he has Aspergers!

He wants friends, he needs friends but he cannot keep them - he does it all wrong and my heart bleeds.

Being in mainstream is so hard for him - a teacher who has been copied in on the officlal diagnosis but won't accept it - a SENCO who knows nothing about Aspergers - it is a nightmare and such hard work - you feel you are battering your head against a brick wall (and so is your child sometimes - actually battering through frustration!).

I too wanted to run away, buy a house in the middle of nowhere and just let my son be himself and to let me just love him to pieces.

newscot Sun 24-Apr-05 06:32:36

Blossomhill, this is exactly how I have been feeling. I see myy DD (language disorder) trying SO hard to fit in but not quite making it. She is so sociable and tries so hard it just breaks my heart. She is aware that she is different and I know she gets stressed. It just eats me up. I'm sick of looking forward to social events only to come home feeling depressed when I see her with other NT kids and know things aren't quite right. I compare all the time and know I shouldn't as it achieves nothing. I hope maturity helps.
When I have time will tell you the very positive story of DD's cousin (similar problems) However baby now calling me.

Any hints for something to take the never ending dull pain of it all away?

KarenThirl Sun 24-Apr-05 07:30:14

Funny, I'd been thinking the same thing yesterday, about J being between two worlds. I was thinking of contacting NAS to see if there are any summer activities J could attend during the holidays, but then wondering if he would truly fit with the other children there as J isn't obviously autistic. On the other hand, he had a (very rare) visit from a friend in the morning and although it went well by our standards, I had to intervene a few times to calm down very trivial matters that were about to escalate into full-blown tantrums. Where does he belong? At the moment I only know that he belongs with me and the future is a blur. My heart sank on Friday when he came home with an invitation to a fancy dress/disco party (rare indeed), and I knew we were going to have the usual conversation about whether or not he would go. He loves the little girl whose party it is, and wants to mix with the other children, but he hates discos and isn't keen on dressing up, so he didn't know what was the best thing to do. It made me think of all the other children in his class with the same invitation, getting all excited and looking forward to it while J's struggling with it. Tough, isn't it?

Blossomhill Sun 24-Apr-05 08:52:21

Abacus - yes I feel the same. I just want to love dd to pieces. the thing is I already wrap her in far too much cotton wool as it is, which probably doesn't help!

Newscot - It sounds as though are dd's do have similar difficulties with the language disorders. The thing is LD are virtually unheard of so nowadays if I have to explain I normally just say she has communication difficulties (which she does too)!!! Also when you do have time I'd love to hear about dd's cousin, I need to hear some positive stories!!!
As for taking the pain away. Well I am having counselling and it does help. The counseller said to me that she could sense so much sadness from me which is true. I am known to get really angry too. Although I have finally come to terms that this isn't going away ans progress is being made in very small steps!

Karen - Yes I know that heart sinking feeling Felt like that when dd was asked to play at someones house but I was very upfront about her LD and it was fine, apparently!
The good thing with dd is that she is in a unit attached to a mainstream school so spends time with other ms kids and then in the unit with theotehr sn kids. I think (and hope) it makes her feel safe! Hope ds goes though, and has a good time

coppertop Sun 24-Apr-05 09:44:34

I understand how you feel too. Ds1 seems to be really keen to fit in with the other children in his class. His teacher is great with him and understands that he wants to be like everyone else. When he first started using visual timetables at school she was careful to make sure that the whole class used them too so that ds1 didn't feel as though he was being treated differently. Ds1 also likes to be as independent as possible, which makes life difficult for his LSA. He will often reject her help and get on with things for himself. He often surprises her with what he can do unaided but there are also times when he really needed that help.

Social occasions are a minefield. He sees everyone else being invited to parties and outings but gets nothing himself. He notices this and tells me about it. The school holds a disco every few weeks or so after school. He was disappointed when he missed the first one so with a sinking feeling I let him go to the next one. The worst bit was queuing up with all the NT children who were there without parents and chattering away about the discco. I just knew that ds1 wasn't going to be able to manage alone. He asked to go home about halfway through. The lights were too bright, the music was too loud and he didn't know any of the dances. He told me he wanted to go home because "No-one will play with me, Mummy." In fact a few of his classmates had come over to say hello etc but ds1 didn't understand the unspoken social rules about following them and joining in etc. There have been discos held at the school since then but ds1 hasn't shown any interest in them whatsoever. I think once may have been enough.

The only time I've felt truly relaxed at a social occasion was when our local support group organised a family evening. Ds1 had the time of his life and there were no odd looks if he started flapping because he was so excited or when he was so thrilled that he literally forgot how to put a sentence together. He's comfortable with other childre with ASD but also wants to be with NT children.

Ds2 is still at the stage where he's not bothered about what everyone else is doing. When I took him to visit his new playgroup it was obvious to me that he was somehow different to the other children but as it so obviously didn't matter to him it didn't matter too much to me either.

Blossomhill Sun 24-Apr-05 10:02:36

Coppertop - your ds1 sounds familiar to dd in that somedays she is fine on her own and other days she needs so much support and prompting to stay sitting down etc

Dd went to her school disco but spent quite a lot of time in the unit sitting reading (surprise, surprise it's her favourite hobby!)
It is when you come face to face with situations like this that you do see the social gap and in a way I feel it widens as they get older

monica2 Sun 24-Apr-05 12:58:30

Hi all I am a newie here, this thread has really caught my attention, my dd (AS nearly 10) is very insightful regarding her difficulties which can be a positive thing but the down side means she really struggles to accept why she can't be "the same as the other children". She asked me this week if I could "order her a new brain", and has said in the past things like "God must have hated me to have made me like this". I am currently working through a self awareness programme which addresses some of these issues but it's a real battle to get her to sit down and start. Most of the time we are not allowed to say the AS word! She desperately tries to "fit in" and says she can "control it" at school but most of her class have just returned from a 2 night residential trip which she acknowledged would just be too much for her to deal with.

Tiggiwinkle Sun 24-Apr-05 13:11:23

monica2-my DS is 6 and has only just been diagnosed as AS.
We have not told him yet-still coming to terms ourselves. But the other day I was taken aback when he suddenly announced that he "did not like his brain". Whan I asked him why not, he said he felt like this because his brain makes him "hurt people" and he really does not want to hurt them.

monica2 Sun 24-Apr-05 13:43:53

Tiggiwinkle - your ds sounds very similar to dd, I find it really difficult to say the right things in those situations. I have found an excellent book recommended by dd's asd support worker that has really helped her in dealing with her anger, "A Volcano in my Tummy" Whitehouse and Pudney. There are loads of games to work through many addressed at age 6+ which focus on the child acknnowledging triggers for their anger and alternative strategies for them to use. This has also helped dd's self esteem by reducing those moments she feels bad about something she had done.

RnB Sun 24-Apr-05 15:00:35

Message withdrawn

JakB Sun 24-Apr-05 15:06:48

Ah RnB,love, I know what you mean . DD is gloriously unaware of peer groups etc and couldn't give a hoot what people think of her . It must be so hard when your child with AS actually tells you how painful they find different situations. Monica2- I have tried to CAT you! (but you are not accepting messages)...

JakB Sun 24-Apr-05 15:11:18

And meant to say, WELCOME monica2, we're a lovely bunch here! (sorry, distracted by DH shouting from downstairs, 'are you on that bloody mnet again'...

coppertop Sun 24-Apr-05 17:56:37

Welcome to mumsnet and the SN board, monica2.

Vix4boys Sun 24-Apr-05 22:44:08

I hate meeting with friends who have children DS2's age (3) now as I can see the difference in them and it breaks my heart. I see them chattering to each other and playing together and he just wanders round the room looking for doors to play with or flapping and screeching.

I feel so worried about the future, but he is completely oblivious at the moment, happy in his own little world.

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