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Here are some suggested organisations that offer expert advice on SN.

I feel like the worlds worst Mum for wishing it was different.

(38 Posts)
Muddlewitch Mon 03-Oct-11 13:22:44

I don't know where to start really.

DS1, who is 11, has always had quite extreme social and school issues, and is now thought to have Asperger's (which I have known for years.)

I have been looking for some support from local organisations and am reading through all the lovely people with children with Austism and Aspergers, doing such a great job. And they all say they wouldn't change the condition, wouldn't want their child to be any different.

I love my son to bits, I really, really do, but I don't feel like that. If I could change all this I would. In a heartbeat. I wish he didn't have the problems he has, and that every day wasn't so hard for him, for my other children, and for me. I fear for his future and am exhausted by 11 years of fighting for help. And I do wish he didn't have it. I'd give anything, in fact.

And it makes me feel like I failing him.

saintlyjimjams Mon 03-Oct-11 13:33:23

Read some Donna William (google her website), she makes a useful comparison between condition and culture - speaks a lot of sense.

My son is severely autistic and yes I would remove his condition (he's 12 now) if offered the chance. At the moment things are going very well for him and he has a very good life with a lot of hope (he'll always be severely autistic and will probably never talk - but he's made huge progress in the last 18 months - 2 years) which means I don't think about it that much and it doesn't really bother me in that it doesn't really feature in my thoughts. If you feel wretched about the condition then it suggests that things are not working at the moment, and there's nothing wrong with wishing they would or that things could change and be easier.

So I'd set aside the guilt at what you're feeling - that's natural - and focus energies on how things can be improved (whether that's battling authorities or finding something that works - for us finding an activity that ds1 loves and can do was the life changing moment).

eaglewings Mon 03-Oct-11 13:37:30

Hugs, you are not the worst mum in any wat

I wouldn't change my DS, but I'd love him to find it easier to make friends etc

Having a dx and statement changed our lives

zzzzz Mon 03-Oct-11 13:42:16

I think about this too. I'm guessing we all do on some level. My son has a huge a pervasive language disorder...he is 6 and I would cut off both my arms if it would let him talk like other children. I want to hear all his thoughts. I want to know he gets how much I love him. I want to see him academically where he should be. I love my son through and through and would do anything for him, but I do not love his language disorder and I do not think it makes things better for any of us.

I feel no guilt at all about this, for me it is how it is.

All mothers want to make things as easy as they can and as happy as they can for their children. I don't see people queuing up to get a language disorder or asd or any other of the sn represented on these boards so I think I am not alone on this one and neither are you.

tabulahrasa Mon 03-Oct-11 13:44:33

You're not failing him by wishing he didn't have it, not at all.

I wouldn't change my DS, except, it's so hard for him, that's not what I'd keep if I had a choice...it's more that his AS is so hard to separate from him - that I'm not sure entirely what he would be like without it.

He's pretty great really and I wouldn't want to lose any of that, but I hate that it makes him unhappy and that everything's a bloody struggle.

What you're complaining about isn't him, it's nothing to feel guilty about - it's the fallout that's horrible, and it is.

Of course if I could magically make my DSs life easier and I could fix everything for him I would - but I also feel that I don't know the child he would have been without AS and I'd miss this one if he wasn't there.

If that makes sense, lol

There is absolutely no right or wrong way to feel about something like AS, it's going to depend how it's affecting you all and nobody knows that but you.

TalesOfTheUnexpected Mon 03-Oct-11 14:04:33

If I could wave a magic wand and cure my sons, I would. I got told they had one problem, then another problem, then one of them got another problem. I was thinking "Are you serious? Can it get any worse?"

Knowing what I know now and having to deal with their needs, I would turn back the clock, and never have had them in the first place. (That probably seems a bit of a harsh statement, but it's honest and how I feel sometimes).

I love them, I care for them, I adore them but I wish it was different. Every day is a battle and I worry for their future.

You are not the worlds worst Mum, and you are definitely not alone in how you feel.

BakeliteBelle Mon 03-Oct-11 14:07:48

I think organisations tend to opt for the most positive comments, not surprisingly. Don't imagine for one minute that this reflects a reality where everyone is feeling really good all the time about their child's disability. THEY ARE NOT!!!!

When I had DS, I just wanted to stop the world and get off but no-one let me express that (apart from DH who felt the same). We are encouraged to feel positive, but if we are not allowed to voice the bleedingly obvious negative aspects of having a disabled child, those feelings don't just evaporate.

Many years on, I don't wish DS any other way. Time - and enough help - has healed, but I had a decade of wanting things to be different

intothewest Mon 03-Oct-11 14:18:33

If I could cure my DS of his disabilities I would.

I have no guilt about feeling this way.

I adore my DS,but he is going to have a difficult life ahead of him and will always need to have a carer.

...but life is as it is and that's why we get on with it and make it as good for him as we can.

That's what you are doing and that is why you are NOT failing !

Muddlewitch Mon 03-Oct-11 21:56:19

Thank you everyone, your replies have really helped.

MangoMonster Mon 03-Oct-11 22:16:51

You're not failing him and I'm sure most parents would change difficulties their children face. I feel the same and it's not bad to feel like that as long as your facing reality and bring proactive as you obviously are doing. I wish it would all just go away sometimes and that thugs would be so...it's normal and doesn't make you a bad mum just human.

swanriver Mon 03-Oct-11 22:52:36

Ds2 who has just been diagnosed with ASD aged 9, has gone off on a school trip this week, with his twin sister. He is really looking forward to it. The teachers have reassured me that children with worse needs have flourished on the Outward Bound course.

What I didn't realise is how much I have relaxed this week just knowing I don't have to deal with him for four days. I think the little tensions build up and up until you don't even notice you have a permanently cricked neck/brain.

When his older brother went off, I spent all week worrying about him and how he would cope (he is NT..sort of) But today I've just felt a wave of relief re: ds2 who I love tenderly. Just ... a break...

In our ASD group, there is not many people saying they wouldn't change their child, quite the opposite. Sometimes conversely I've felt like only person that liked my child the way they were and felt astonished by the negative emotions. But deep down I felt the same way as them, just have only just admitted it to myself. Dealing wth all the frictions, all the limitations of our existence have undermined my confidence.

I still think love is the only thing that is going to get us through this, and as long as you keep this sympathy with your child, and keep listening to his point of view (in the best sense) he will pick up on that and there will be somethign precious between you and no other child, however NT, could replace that bond.

swanriver Mon 03-Oct-11 22:59:03

Some of the simplest things you think will be part of daily life as they get older, sending your child to play at someone else's house, being in someone else's house without wondering what your child might do or say next, leaving them in school playground to make friends...
but you can't factor in those simple assumptions.

I suppose the best remedy has been to imagine some of things my child does, those special things that not many children can manage, his utter absorption when he is interested in something, his fierce loyalty to his parents, his seriousness, his exuberance, his unconcern for what people think. That helps a lot to remind me I wouldn't change him.

cory Tue 04-Oct-11 09:14:58

Bless you, OP, wanting an easier life for your child is not the same as rejecting him.

In a way, it's probably easier for me because my dcs' SN is not a common one, so I am not faced with some kind of common consensus about what I should feel about it; I can feel whatever I do feel. Also, dcs themselves are able to have a very clear opinion on the subject - it hurts and limits what they can do, so they'd rather it wasn't there.

But even I have sometimes felt a bit left out during discussions on here when posters claim that disability is only about society and if only we can change society then disability won't be disability. There is no way of changing society that can make my daughter enjoy being in pain. No amount of dressing it up will conceal the fact that this is an undesirable state of affairs that human beings try to avoid.

We get on with it. We do the best we can. That's being a good parent. Denying that it's hard won't make you a better one.

BagPuss71 Tue 04-Oct-11 13:49:28

My son is 7 and has ASD, high functioning. He is a gorgeous boy, very loving and I'm very proud of the progress he is making whilst at the same time coping with ASD. I love him to bits.

Whilst I have known of his ASD for a long time and I accept it, I would wish the ASD away because it causes him such awful anxiety and such distress. Of course I would remove that if I could.

unpa1dcar3r Tue 04-Oct-11 20:56:30

Muddle
Bless you.
I think most of us want things to be different. I would like my boys to live in a utopian society which didn't reject disability the way it does, but it aint gonna happen. For that reason alone if someone came up with a cure for Fragile X syndrome I would bite their hand off for it for my darling boys. Just to makes their lives better. Not mine cos I adore them (although not the grief that goes with caring for them) and they are the sweetest most innocent boys anyone could hope for.
They're not out nicking cars, taking drugs, impregnating underage girls, demanding £90 trainers...they're happy to have a bar of chocolate and a bag of chips bought for them. Youngest (13 this month) still sits on my lap most nights for his snuggles.

LunarRose Tue 04-Oct-11 21:45:57

Read this, it really helps Welcome to Holland

Also look out to see i the Insiders Guide Course as made it to your area, (they started out in Brighton) no-one offers you counselling for the diagnosis, but if they did it I don't think it could be better than the course.

Hugs
x

cory Wed 05-Oct-11 08:57:24

I'm not fond of the Holland thing, mainly because it assumes that Holland is going to be a place where you can live comfortably, if differently.
"at a slower pace" doesn't actually sound unpleasant.

But what if they turn up at Amsterdam airport and put your child on the rack until she screams in pain and you realise that this is part of everyday life in Holland- then surely your natural reaction is going to be to want to get back on that plane again?

"The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease"

That depends on the condition in question.

BakeliteBelle Wed 05-Oct-11 09:00:57

I think we need to write another one - 'Welcome to Afghanistan'

LunarRose Wed 05-Oct-11 12:28:35

I don't think that autism would equate to "some horrible, disgusting, filthy place, full of pestilence, famine and disease" and that is exactly the point of the poem.

I find the equating autism to the horrors of war is unhelpful in the extreme and quite quite vile

tabulahrasa Wed 05-Oct-11 15:07:37

I think the 'Welcome to Holland' thing is very much dependant on what condition you're talking about, how severely your child is affected and what state you're in at the time...

there is already a Welcome to Beirut if anyone finds that puts it better.

I think that how I feel about it isn't necessarily the same way that other people feel and to be honest isn't even the same as how I feel on a different day, lol. I think it's absolutely fine to feel that it's different, but ok, it's different and a bit bad - right through to feeling like it's a tragedy... and even to feel all those things all at the same time.

What isn't ok is to feel guilty about not feeling the right way - you feel how you feel about it, no-one needs a whole new set of guilt about it to go on top of everything else.

BakeliteBelle Wed 05-Oct-11 16:34:08

lunar...Wow, I don't think I am being 'quite quite vile'. The idea was an update on the Welcome to Holland and the welcome to Beirut (now that Beirut is no longer a warzone...). I find the latter a really helpful and humorous piece that validates my feelings that sometimes, this experience is shit. I absolutely hate 'Welcome to Holland' and find it did not reflect the extreme experience I had of having a very severely disabled child with challenging behaviour. I find it the equivalent of those comments from people you get along the lines of, 'special children are sent to special mums'. Too easy, too dismissive.

My son is not autistic, but I know those with autistic children who also loathe 'Welcome to Holland'.

LunarRose Wed 05-Oct-11 21:16:29

I'm sorry but I just read the welcome to Beirut, or at least as much as I can stomach. Apart from the very last paragraph found it quite horrible, but different things will appeal to and help different people.

BUT I very strongly feel that Autism is not a death sentence and I personally find comparing it to a war (the poem does this directly) vile and disgusting.

Don't assume this has anything to do with how severely affected DS is or the degree of challenging behaviour I do, and will, have to face in the future.

I know I'm probably on my own in this, but even with the challenges in DS' life personally I don't think I would want to cure him, (Although I sometimes think differently when the going is hard).

The problem is this I honestly don't know where DS ends and autism begins, it's so intertwined in who he is. But I would want try and change the whole world round him to make his life easier, comfortable and happy.

That there will always be mixed feelings towards diagnosis and life with autism, but if you can't put those feelings to one side you may never be free to enjoy the very special, the very lovely things about "Holland".

MangoMonster Wed 05-Oct-11 21:23:01

lunar I think you're right, it really does depend on the individual situation and your own perspective, everyone feels how they feel... Can't catergorise it.

Lougle Wed 05-Oct-11 21:42:16

I think it depends. It depends. It depends....on what I am looking at.

When I laid beside DD1 on her bed tonight, and she told me about using 'mato Tureeee' to make her pizza, well my heart just melted. My little girl, using the language as best she can. Yes, she gets it wrong. Yes, half the world doesn't understand her, but I do, and I love her all the more for it.

When I looked at DD1 playing with her 'toy library toy' - a plastic caterpillar on wheels with springs along the top holding plastic balls, and a piece of string to pull it along. Clearly a toy aimed at 9-12months, yet my almost 6 year old looked at it with awe and wonder, cherishing it. I loved her all the more for it.

When I saw her climb on a 2ft high table to copy her 2½ year old sister and jump off it, then realise she couldn't jump, knelt down, rocked backwards and forwards trying to work out what to do, reversed, turned around, delicately eased her knee of the table and lean forward to balance, then finally touched the floor, straightened, and gave a triumphant bow because she had 'done it'....well at that moment my heart broke. Again. My nearly 6 year old can not jump. She has to watch her 2½ year old sister do things that she cannot do, and is convinced that she can do them, just because she wants to.

When she starts to pull her hair and screech with frustration because we cannot understand her words, her unique language for things she wants. It hurts.

When I look into the future, and think 'where will DD1 fit?' I don't have hopes and dreams for her, because I don't know what is realistic. I have 'what if's'. What if she could read as an adult? Will she read? I don't know. What if she could write as an adult. Will she write? I don't know. What if she could live semi-independently? Independently? Will she love, marry? I don't know.

I read 'Welcome to Holland' in a burns unit when I was a student nurse, and found it profoundly moving. It resonated with me. I have to say, though, that this side of the fence, I'm not so sure.

I think that actually, I wouldn't mind Holland, if only I knew what to expect. But it feels to me that instead of hearing 'Welcome to Holland', a Country that is well known and researched, I have heard 'Welcome to Faskldfjseijrwens', a country that no one knows how to spell, no one knows anything about, and no one can tell me anything about, except that I should be grateful that I'm here, and not somewhere worse sad

LunarRose Wed 05-Oct-11 21:48:53

lourgle - grin @ 'Welcome to Faskldfjseijrwens'

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