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Newly diagnosed AS - how to forgive/stop resenting?

30 replies

phoenixagain · 18/10/2010 13:15

I have lurked here for a while but today I find myself struggling to cope with my 11 year old AS DD and wonder if anyone else has been through something similar?

After years of being told by primary school teachers that my daughter was well behaved at school and high achieving academically I sought diagnosis as I knew something was wrong. My DD's behaviour was incredibly difficult at home and she was so different to her peers......

I was glad to get the AS diagnosis as it explained everything. Since we received it in the summer I have exhausted myself with reading all the books/websites/researching possible support groups and activities for DD etc etc.

BUT - after feeling bereaved for a while I now feel such resentment at the level of dependence my DD has on me. High grades at school in some subjects, but she can't remember how to get dressed every day? I find her need for me absoulutely suffocating.

I have worked really hard to help her transition to secondary school. Have been to meetings and phoned and e-mailed to try to get her needs understood (don't think they like me much, but they don't have a clue about AS so I have to stick up for DD).

For 5 weeks DD has refused to approach any adult at school with her problems, but at the weekend went straight up to a member of staff in a supermarket who was promoting crisps and asked to try the new variety.... When I query this with her she has a meltdown as she can't cope with any kind of critiscism.

In short, I just resent her dependence and can't forgive her behaviours even though I know its not DD's fault.

I am a SAHM and had hoped to go back to work by now, as younger DD is at school now. Instead I just see a future of looking after someone taller than me who acts like a toddler.

I haven't told anyone about the AS as no-one seems to understand it in someone so high functioning. DH is a good man, but I am coming to terms with the fact that he is also an aspie and depends entirely on me to sort out everything for my daughter.

Is this resentment part of the journey towards accepting it all?

Thanks to anyone who has been through this and feels like posting about it.

Sorry if this font size is too small - new computer issues ..........

OP posts:
LesbianMummy1 · 18/10/2010 13:34

Hi you have just summed up exactly how I feel my dd is 9 and although not got full diagnosis everybody thinks we are heading that way paediatrician already convinced we will be there very soon.

She is not so academic but also been told she is never naughty at school. I do not think she is naughty but I feel she is so frustrating at times e.g. I have shown her five times today which way up her knickers go whilst ds aged 4 has dressed completely tidily and independently.

I tried to take her somewhere yesterday she has been asking to go to and within ten minutes she was in complete melt down and i felt torn because she wanted to go home but ds was loving it and there was only 45 minutes left. I felt awful for resenting her but I felt like it was only me with a child creating a fuss.

phoenixagain · 18/10/2010 13:52

Thank you for your honesty LesbianMum. Its not just me then....

I feel terrible not being more patient and understanding with DD. Most of the time I manage to pull it off, but sometimes I just can't hold it together and I tell DD off when it is not her fault she is how she is. Then I have a hellish day of guilt.

Your "knickers" problem is very familiar to me. You are not alone.

OP posts:
auntevil · 18/10/2010 13:54

If it's any consolation phoenix my DS is 7 and dyspraxic and has real issues dressing too. He has often told me that he is never moving home, but that it's ok as he can go out to work and he will spend some of his money on bringing me nice things.
To make issues worse, both of our last 2 house moves have been to neighbours where there has been a son in their 40s still at home. Doesn't bear thinking about.
On the bright side, there are some AS mums who post on SN that have kids of their own, filling in the same paperwork that you have done, speaking to the schools about the same issues. Your DS is high functioning, do not lose hope.

Ineed2 · 18/10/2010 16:58

My Dd3 fits this description too pheonix. She rarely goes anywhere without me, is totally dependent on me, has massive meltdowns, is very hard work. But perfect at school apparently!! It has take 3 years to get her used to the fact that I go to guides one night a week without her. She used to get sooo upset.
I am doing lots of reading around how AS/HFA children camoflage their difficulties at school and then go into overload at home.

phoenixagain · 18/10/2010 18:10

I need 2 - I can find lots of information on the masking/camouflaging coping strategies of AS girls at school, from Tony Attwood onwards. My problem for years before diagnosis of DD was that no-one who works in education seems to know about it Sad

OP posts:
HelensMelons · 18/10/2010 18:36

Hi phoenixagain, would a referral to occupational therapy help, in terms of getting her dressed; are there any support services in your area that could help you and her to become more independent?

I s'pose resentment could be part of the grieving process or it could be that you feel overwhelmed atm?

We have transition next yr ds2 in p6 this year and already feeling it a bit.

londongirl4 · 18/10/2010 19:23

I would say that this behaviour (angel at school/devil or toddler at home) is typical of HFA/ AS girls. Certainly true of my HFA DD 7.

Sounds like the frustration and isolation you're feeling is part of the grieving process as HelensMelons says....I've been in bits for the last 2yrs since dx, only really just coming to terms with it.....do you have a local group for autism mums, I found that really helpful?

Ineed2 · 18/10/2010 19:41

Yes pheonix I have that problem too, I have been trying to explain Dd3's issues to school for 3 years and no one believes me so I am gathering information written by professionals such as Tony Attwood to back up what I am saying. Our biggest problem to date is that the paed has been taking more notice of school than she has of me, so their opinion of my daughter is carrying more weight than mine!!
I struggled with Dd1 with no dx, she was very difficult to live with so I can sympathise.
I don't know about you but I just get sick of hearing my own voice repeating the same mundane instructions day in,day out....

colditz · 18/10/2010 19:43

I don't know, I still feel resenty myself. As in "How come you can program the Sky box but you can't pick up your fucking fork?" (not that I say that but I think it almost daily)

siblingrivalry · 18/10/2010 19:54

I know exactly where you are coming from too.

My dd is almost 10 and has AS. She is totally fine at school and when I tell them about things at home, the teachers look at me as if I am describing a different child.

Please don't beat yourself up about feeling down. I have also been wishing I could return to work recently and have had moments when I have resented the AS because it dictates so much of our lives. It's bloody frustrating.

I struggle most with dd's need for order and tidiness (she's forever moving stuff before I've finished with it) and with her lack of empathy. I spend a huge amount of time reading social stories and trying to explain to her why she isn't the must hard done-to person in the world Hmm

My dh is also aspie and I know that it's a double whammy -I feel for you, because my dh is unable to offer me any kind of support at all. It's really lonely at times.

Keep posting on here -we are all here to listen and to support each other.x

cansu · 18/10/2010 19:55

I think most people must feel like this. Whilst I fight daily for my dcs to get the help they need, it's hard not to feel resentful sometimes about how tough our life has become. I also worry about the future at times and have to consciously force myself not to go there as there are no answers to the kind of problems I will have to deal with. I get very down about ds1's toileting (still in nappied aged 9). we are trying to train him and are getting lots of support from school, but I wonder if I will be doing this when he is 18 tbh.

mumslife · 19/10/2010 09:03

This reply has been deleted

Message withdrawn at poster's request.

LesbianMummy1 · 19/10/2010 09:41

Hi mumslife yes I get meltdowns with dd often in shops or places where there are crowds. DD can not dress or use a knife and fork.

sibling rivalry I wish my dd was tidy she just creates chaos wherever she goes.

colditz that sounds very familiar

phoenixagain · 19/10/2010 10:04

Thank you to everyone who replied yesterday and let me indulge my self-pity.

I think I will recognise this resentment as a symptom of letting things get on top of me/getting too tired/not doing enough for myself. I think it was a warning sign as all I have been doing recently is trying to get my head around my new life as a special needs mother (which is better than pre-diagnosis when I thought I was just a bad mother Smile.)

Grin @ colditz. Yes that sums it up!

DD has had OT for getting dressed issues but her motivation to get dressed in itself is entirely lacking. Visual aids haven't helped as she doesn't see why she should refer to them. I am taking it day by day.

Sibling Rivalry - it helped to hear that you had the double whammy too. Talked to DH last night about grieving for the child I thought I had and the person I thought she would be and DH commented that future time DOES NOT EXIST AT ALL for him and he never had any thoughts in the first place about what DD could do/be/achieve Shock. Have been together many years but his aspie side is only just coming out.

I have found a support group and am going to my first meeting this week.

Mumslife - good to hear how well you cope with life. No I haven't had meltdowns in the street yet. I imagine it could happen though as for years we didn't even know that there were any issues with DD, and then for the past 2 years things have got worse and more noticable month by month.

OP posts:
LesbianMummy1 · 19/10/2010 10:15

Does anybody know if you can go to a support group before written diagnosis? I have looked into everything and see no reason for verbal diagnosis to change but everything just seems to take so long.

phoenixagain · 19/10/2010 11:26

I think you can LesbianMummy1 - judging from a conversation I had the other day relating to the group I have found. I think its understood that diagnosis can be a very long road to travel.

OP posts:
amberlight · 19/10/2010 11:43

"How come you can program the Sky box but you can't pick up your fucking fork?" (not that I say that but I think it almost daily)"

"Because it's a different skill set, Mum, and the fork is horribly cold to hold, and has sharp spikes that end up digging into my mouth if I get the 3-D positioning wrong, and if I don't get the angle right the food drops off... and then there's the sensory avalanche from trying to eat whatever is on it - hot/cold, rough/smooth, salty/spicy/sweet, etc etc and the noises of eating it and the smells of eating it...Blush

...whereas just programming a box means moving one finger and using my brain as a computer, which is what it wants to do."

Yup, it is hugely difficult to understand our world and yes, parents get hugely exhausted in the process. The more specialised help and support you get, the better. Definitely.

siblingrivalry · 19/10/2010 11:57

I love to read your perspective, amberlight, thank you.
Interesting, as an aside, that you commented on the noises of eating -we need background noise during meals because dd can't tolerate the noise of other people eating (sorry to highjack phoenix!)

Phoenix we only really became aware of dh and his AS after dd got her dx. He thinks I'm mad for feeling sad about dd's AS at times -to him, that's just how it is.
I have actually started adapting and using some of the strategies we have for dd with dh -such as writing down what I would like him to do in a really clear, non-ambiguous way.

I have also been known to tell advise him to go upstairs to our room for a breather when he is getting agitated!

phoenixagain · 19/10/2010 12:13

Grin @ siblingrivalry - that is EXACTLY what I have been doing with my DH too. I have recently given up with verbal instructions and only write lists now! Our worst ever row was over him messing me about and wasting my weekends because he will not plan anything and is totally spur of the moment. I thought he was just being selfish.... sibling My DH has no problem with DD's diagnosis either and hasn't mentioned any problem coming to terms with his own AS traits. Maybe its a relief to him??

amberlight - loved what you put about the fork/eating. Any thoughts about getting dressed in the morning?

OP posts:
amberlight · 19/10/2010 13:02

I don't know about MN royalty - I might push a hoover round occasionally though? Blush

Getting dressed in the morning? Do I have to get dressed? Who invented getting dressed anyway?

OK, how about this...imagine the worst thing in all the world you hate having to do. Dentist? Docs for one of those Intrusive Visits? Whatever makes your mind go blank and makes you forget to book the appointment or deal with it...you can always find a thousand excuses not to go through it?

Getting dressed is like that, for many of us.

Here we go with Amber Gets Dressed in the Morning: Brace yourselves...

There I am in my nice smooth nightie and soft fluffy dressing gown. They aren't tight, they don't dig in, they don't scratch.

I have to decide what to wear: this is a social dilemma of mega proportions, because there is a Correct Thing To Wear for every social occasion, and getting it wrong gets us mocked or excluded. So a plan has to be formulated - colours, materials (soft, no labels to dig in, no seams to dig in, no scratchy wool etc).

Knickers! (and the same to you, they cry...). No, I do mean knickers. They are often screamingly painful to put on, because they are tight and have elastic which feels like pulling knives up my legs.

Bra - not something for younger children, but who in their right mind invented something that is pure pain to wear? It digs in, everywhere.

Top - feels like scraping sandpaper over myself unless it's one of my absolute softest ones.

Socks - don't get me started on socks - they are HELL to put on and I can feel the seams in them. It hurts.

Trousers - always always black wide leg trousers unless it's my one pair of brown ones. It's my 'thing'. No point trying to get me to wear a skirt as I just won't. Some will.

Shoes - arrghh. See Socks for details.

And through all of it, there's my problems with co-ordination, which not all of us have, but many do. The clothes fight me. I can't fold them, either - I make a total mess of it, which is stressful because I like to be neat and I can't be neat.

By the time I've got dressed, it feels like I've done ten rounds with a sandpaper-covered heavyweight boxer. I just want to get back into bed and stay there.

Facing that every day takes big courage. To oother people it looks and feels like we're just messing about, but we're not.

Worse still, not all of us can express any of it, because the bit of our brains that feels pain doesn't really connect to the bits that talk or work out how we're feeling. Same reason as why many of us panic over tiny cuts but don't notice huge injuries - the brain bits are not connected the way you expect them to be in many cases.

How to solve it? Take it back to absolute basics and try very soft looser-fitting clothing in a very low-sensory environment - low lighting, not a lot of noise, no labels in it, avoid things with rough seams. Clothing that looks and smells the same as yesterday is hugely less challenging than something very different. Smell is a big thing for many of us - are you using a very powerful washing liquid etc? Would a milder smell make clothes less scary?

Pictures of the right sequence to put things on certainly help, too.

If none of that works, I have more ideas. Grin

auntevil · 19/10/2010 13:26

Thanks - again - Amberlight . It really does help to try to get into the mindset of eating and dressing. had to lol with colditz as i imagined hundreds of people at dinner time all having the same thought - inserting DS, PSP, Wii,x-box, computer etc .
ideas re socks would be good. DS usually comes back from PE with no socks on.
I think you've also probably explained why he wears so many things inside out - no seams! also why if he chooses something at the weekend it's jog bottoms, baggy t-shirt and crocs - in all weathers!

amberlight · 19/10/2010 13:29

auntevil, oh yes - no socks and something baggy worn so the seams can't get to me would be heaven!!!

Mealtimes - forget forks etc. Go with a squashy warm-to-hold easy to use spoon if necessary. Sod whether it's good to look at. If it works for us, go with it. Saves so much stress on mum and dad Grin

The noise of food being eaten is amazingly loud. Apparently other people can't hear it/filter it out somehow (how do you do that?! Hmm) . Imagine being in a quarry next to a rock crushing machine - it's like that. A young friend of mine wears headphones at the table so she can't hear the others eating, as she can't cope with that, and the sound of her eating too.

siblingrivalry · 19/10/2010 13:33

You have given me a much-needed reminder, amberlight
I snapped at dd this morning after she had stood for 15 minutes readjusting her polo shirt. Blush
I forget sometimes quote how uncomfortable she will be feeling if her clothes aren't 'right'.
Thank you Smile

auntevil · 19/10/2010 13:38

We have the reverse when eating - and doing everything. DS can't stand silence - so he fills the void. He often hums and eats if it's too quiet.
Maybe i can see why he might be still at home by 40 - Not really date material if DS turns up in joggers, sloppy t's, crocs and eats food half leaning in the plate, with food all over him and occasionally head to plate when eating [hhmm] Just as well he's a charmer!

amberlight · 19/10/2010 13:44

auntevil, I can't stand silence either - but it's because then I can 'hear' the pain of other things. The noise (of a sort I can cope with e.g. music) helps take away my brain's ability to 'hear' the pain so much.

We can get round date problems using Cunning Plans. I use them myself. Well, meals out with dh, I should say!!