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The realisation that it doesn't matter what I do, how much help, therapy, support and input i have

(29 Posts)
bialystockandbloom Thu 18-Aug-11 22:48:33

Ds will always be autistic, and the older he gets the more apparent it is, the more other children realise he is different and odd, the more he realises he is different and odd, and doesn't understand it, and the more ostracised he will become sad

He is starting school in September, perhaps I'm just getting nervous about this, and in the process of appealing his rubbish statement, and also we've had a hitch in our ABA programme as no tutors, plus a disastrous playdate yesterday where ds was horribly bitten (by a severely dysfunctional but nt child, a long story!), so maybe a combination of depressing factors. But his disabillity, and condition have been so much more evident to me in the last couple of weeks, and it is all I can do to stop crying all the time when I think about my lovely, trusting, naive little boy thrown into a harsh south London playground, unable to cope, to interact, to even know if children are being nice or nasty to him.

Doesn't matter how much we 'practice' playing superheroes etc, he will never genuinely 'get it', just go along with the games without understanding them in the way nt children do. I wonder what's the point of us bothering, but then of course we can't 'give up' on him.

Please someone tell me to get a grip.

bialystockandbloom Thu 18-Aug-11 22:54:50

Sorry, a really self-pitying, wallowing post there. blush Just feeling a bit fragile and bleak this evening. Things not that gloomy really.

silverfrog Thu 18-Aug-11 23:05:57

oh, bialystock. I remember the starting school fears so well. we had to put dd1 into a place where we knew she woudl fail, with no ABA (either at school or at home).

I used ot drop her off, come back home and weep for her. she was always on her own, never interacting - when I knew she was capable of this at home - not even with the teachers there.

but she did cope. and she was happy enough in her own way. she found some pictures of her time there last week, and spent ages going through and labellign everyone, and telling me about things that had happened there.

yes, your ds will always be autistic. that cannot change. and yes, you will always worry. do you have other dc? ithelped me a lot that I had dd2 at home to distract me away from continuous worry about dd1.... and I now find I am goign through all the same fears with dd2 about to start school in september. I think it is, at least partially, "just" the job of a parent, tbh. there are a million little things I am fretting about for dd2 (and dd1, as she is changng school in Sept too) - of course no one at school is going to "get" our dc the way we do. and they will have challenges.

but, with the support you can give him, he will meet those challenges head on.

it has been a long time coming for dd1, but these days she is capable of joining in a game, and understading it for what it is - she has just turned 7. I never thoguht we woudl get to this point. but today she has:

played a few traditional playground games (what's the time, mr wolf?, tag etc)
joined in very convincingly with dd2 playing an imaginary game where they drove to the shops, went shopping for random objects, went to a cafe for lunch, and drove home again. she participated fully (as fully as she was able, admittedly, but fully nonetheless) in all phases of this game, from deciding which way to drive what to eat, what to buy etc.
spontaneously opened/shut and locked/unlocked the imaginary door when dd2 wanted to put their nanny in jail blush grin - I was shock at this as had no clue she would understand the game at all, let alone be able to mime the actions without prompting

and more.

it will be ok - mostly because you will make sure it is ok. yes, more fights and challenges, but ones to meet head on smile

insanityscatching Thu 18-Aug-11 23:06:09

I'm not going to tell you to get a grip because I think everything you write you have justification for. I still feel like you do somedays and it's more than thirteen years down the line. Usually because I've hit a rough patch or more likely lately that the future I tried not to think about is up close and personal. I don't know what to advise though sometimes I just wallow until I find the strength to go on.Maybe you need to wallow too..

Trixiebix Thu 18-Aug-11 23:22:47

What you are feeling is perfectly normal. I so relate to it- I find I swing up and down continually! Sometimes I am full of enthusiasm and positivity and other times,like you, I look at my ds and think 'how could this have happened to us'? My ds is 11 and only dx with AS 6 months ago. We didnt even see it coming-school brought it to our attention( still cant believe it sometimes). Our lad is quite mild but I still think, like you, it doesnt matter how mild or how much we do it will always be there. I often look at my ds when he's walking in front of me in town etc and think how noticable it is that something's not quite right and it breaks my heart. At least your ds sounds very young and the younger he has a dx the better hope there is for him to lead a fairly independant life, so you should take heart from that. Its like grieving for all the dreams, hopes, aspirations etc that you had for him. All this is probably not much consolation to you but you are sooo not alone and you know that whatever you are thinking now, when he needs you you will be there , fighting his corner all the way. Please cheer up- there's thousands of us in the same situation. Keep plodding on for your lovely ds <big hugs>

bialystockandbloom Thu 18-Aug-11 23:31:15

Thank you for the replies.

Think you've both hit on the same thing - the fact that school is looming. And the last few weeks have just been a bit rubbish - ds's brilliant ABA tutor left (we knew it was coming, but haven't managed to get a replacement yet) and he's been unsupported at nursery. I pick him up and it might as well be rewind to a year ago - he's just been left to his own devices, repetitively "playing" in a non-functional way, no interaction, and his behaviour is so much worse on nursery days. And just feel guilty I'm putting him through the strain and stress when he's so much happier just at home with me.

Also DP is no help whatsoever (insanity I nearly posted on that other thread - what you said was absolutely how it is for me, I could have written your post).

silverfrog yes I have dd too, who is gorgeous, and my only ray of light at the moment. She does help, but also serve to remind me of how different ds is - she is approaching 2yo, and looking at her I can't believe now (with hindsight) how I didn't spot the signs earlier with ds.

Thank you for your encouraging words though - they do help.

Think I do need to wallow. I haven't done so since ds was diagnosed - not once. Have no-one to wallow to, except to myself (and MN!), and have to keep going for ds.

bialystockandbloom Thu 18-Aug-11 23:38:29

x-posts trixiebix thank you too. It helps knowing I'm not alone. I suppose it is the fact that he is starting school and I won't be there to protect or help him, he'll just be so vulnerable. I'm sure it'll be fine really, it is (hopefully!) a good school and we are doing all we can to make sure he has the best support possible.

It is just so fricking unfair and downright bloody rotten for him that he has this, and his life is going to be so hard, and I just don't think I've ever just stood up and shouted this at the top of my voice like I really need to!

EllenJaneisnotmyname Thu 18-Aug-11 23:58:06

Hi Bialy. It sounds really crap at the moment, I'm so sorry. I think the transition to school is really scary, putting your child into the hands of MS teachers and TAs. But I truly think it's sometimes worse for us as parents than it actually is for our children. They quite often cope at school fairly well. We really want them to be able to join in with all the others, but at least initially, if they are happy enough to go to school, the social side of things will come, especially with sympathetic TAs. It only takes one child to 'get' your DS for some sort of friendship to happen. With my DS it started with an older, more socially skilled girl who liked to mother him. Then he found a boy who was also a bit on the edge of things. And my DS's best playmate/enemy is his little brother.

WilsonFrickett Fri 19-Aug-11 00:09:45

DH was just giving me a right slagging commenting how different it (I?) has been this week as DS went into primary 2, compared to last year when he started school. I went to a very dark place with the anxiety. Because it was a shit time.

BUT he is doing ok, actually. And one thing I would say, seeing as you mentioned South London playgrounds - we are in a very urban school that I was extremely catsbumface about before DS started. It's brilliant. Loads of English as a second language (so his language doesn't stand out), one AS kid who was asked to leave previous school as teachers couldn't cope (our school does not give up on children), loads of in-class support (because almost everybody needs something).

We are moving house (long story) and I have given up on my preferred Coastal town because the school is full of PFB Tarquins and Tarquinas - and DS would stick out like a sore thumb there, even though the education would be 'better'.

EllenJaneisnotmyname Fri 19-Aug-11 00:53:55

I think it's been discussed a lot bit on here that Ofsted 'outstanding' schools aren't generally the most inclusive and supportive places for our little darlings. Amazing how your priorities change...

coff33pot Fri 19-Aug-11 00:55:51

oh Bialy
I am sorry to see you are so down sad
We are their protectors and that is why its hard to send them to a new place and we are not there to pick up the pieces if it goes wrong from time to time. I hate sending DS to school everyday. It so easy for me to just keep him at home where he is safe. But the thing is at some point in the future my DS is going to have to face challenges and no doubt through his whole life. The way I look at it and keep taking him is that he is young and will somehow learn how to shrug off the negatives from people or at least learn to avoid difficult situations. If I keep him home he will learn social skills but at a much slower pace than at school among other peers as normal day to day situations dont always happen at home. Its real hard isnt it xxxx

And I am not going to tell you to get a grip either.....Our grip is allowed to slip once in a while and mine does like a yo-yo smile

daisysue2 Fri 19-Aug-11 01:16:14

Starting a new school is always emotional but as has been said they do cope quite well and just finding one or two friends is all they need to cope. My dd is going into year 7 and I can't believe she will be in a mainstream comp. We were told that she would have to go to special school but she has come on so much. I'm sure she will cope with the next thing that is thrown at her as she always does.

We tend to worry about how we would feel in the same situation of being bottom of the class, other children laughing at us, having few friends, not understanding what is going on. But as long as they have sympathetic TAs/LSAs who will protect them they do cope and they learn to fit in.

In reception my dd said yes or no and that was it. She is now functioning with her Speech at pretty much slightly below average ability and higher than average in one area, although her memory is very poor still in some areas. I always thought she would progress so slowly that she would never really be able to fit in. She and it is through all the time we have put into her therapies. It's not easy but they do work. Some areas wont change but other areas are just developmental delays and they can improve.

Don't think that Autism is never changing, my dd has learnt empathy, she also knows how to bitch with the best of them. All skills I taught her so she could fit in.

For years I had kept her over protected but then I made a decision that I wouldn't molly coddle her, and that she needed to grow up quicker than other children as it would take her much longer to learn skills that would mean she could fit in. I prepared her for what was just around the corner rather than dealing with it when it happens. In the way they do in the transition to new schools for children with Autism.

I find it hard now for her to keep her own identity as she wants to be one of those girls who looks and does exactly as everyone else does. Now I'm talking to her about being individual and that it's not a bad thing to be a nerd. How did we ever come so far.

dietstartstmoz Fri 19-Aug-11 10:14:30

oh Bialy, I could have written your post. We are in exactly the same situation, DS2 starting reception in 2.5 wks and I have been a wreck for the past few weeks and keep crying. Both DH and I have said we think his ASD traits are getting worse, it was his birthday this week, and he's so young for his 4 yrs. He's like a 2 yr old in many ways and I am heartbroken that he is Autistic and always will be. I feel I don't have anyone to talk to and as he gets older the huge differences between him and his peers become more apparant. It's so bloody unfair isn't it. We'll have to provide some support to each other. Thank goodness for mumsnet.

bialystockandbloom Fri 19-Aug-11 10:19:33

Thanks everyone smile Just going through a bit of a stressful and difficult time atm, with appealing statement, starting school, etc, and DP no help whatsoever (hasn't even read the appeal document I've spent the last month doing) but that's a whole other story.

Feeling heartened by the positive outcomes here. The school he's going to isn't an awful sink school or anything - but compared to the idyllic lovely little nursery he's been at it seems pretty scary. But then again, the lovely nursery is full of Tarquins and Tarquinas, and is the one that people fight to get into round here, but for a child with SN it's pretty appalling - without his ABA shadow there ds just flounders aimlessly and they have no idea what to do. So thank god he's leaving! I think we have made the right decision about the school he's going to <<crosses fingers>>

Daisysue I suppose I have spent the last year (since dx) doing everything possible to equip ds with the skills and knowledge he needs to 'fit in'. I think I'm doing the right thing with this, for the reasons you say. But it just struck me that other children (four year olds) are realising he's different, and I think am I kidding myself? To me his progress has been amazing, and he is amazing (and works so hard), but sometimes I feel guilty that I'm pushing him like this just to 'fit in', and worry that it's making him more anxious. But your post has been really helpful, thank you.

bialystockandbloom Fri 19-Aug-11 10:20:32

dietstartstmoz sorry x-posts. Have to dash out now but will post later smile

graciousenid Fri 19-Aug-11 12:59:53

baily I don't want to hijack but I'm feeling pretty much the same atm - problems (again) with ABA programme & this time I honestly feel like I don't have the strength to pull it all back together. School (lack of) & nursery issues. Just exhausted & self pitying (this morning I cried because I've hit the wall & ds' autism has ruined my life - that's the nasty headspace I'm in, I actually don't want to pull myself together I feel like stamping my feet & shouting 'it's not fair'). So fed up with being the one who holds it together.

dietstartstmoz Fri 19-Aug-11 13:15:21

Gracious Enid-I know how you feel. We are not doing ABA, but just general frustration with everything, therapies especially speech therapy which I find awful and it upsets me when we have been. DH has taken Ds this week as I couldn't go. I have been doing lots of crying and 'it's not fair' this week. Our DS2 is so lovely and it's not fair that he has ASD, that any of our children have ASD and it effects them so much. We have an older son who is NT (with some traits) and everyday I am so aware of what we don't have with DS2, and what we're missing out on as he is ASD. I want him to have what his brother has, being happy, having friends etc. I have been doing lots of crying this week, we're 5 months since dx and it's awfully hard some days.
You shout and stamp your feet, and i'll join in as well.

WilsonFrickett Fri 19-Aug-11 15:09:29

It's OK to be angry and it's more than OK to shout and stamp your feet. We do talk a lot on here about accepting DX's, seeing them as part of the child, but it's OK to hate it too. Some days I do see that my DS problems help make him what he is, other days I hate HATE hate that he is like this and I would do anything to make him ordinary. Not even normal. Ordinary. Pah.

daisysue2 Fri 19-Aug-11 17:40:36

Don't worry about pushing him to fit in, and that other children see him as different,the alternative is worse - a child that will never ever fit in when they are out of your and schools protection. One of my nieces has special needs but has never been pushed and the difference between her and my dd is getting bigger and bigger.

There is a window of opportunity now for you to get as much done with your ds, I think with SaLT they say after 8 they can't change certain areas of their speech anymore it just about giving them strategies to work with.

Reading is the most important thing for any Special Needs child in mainstream school is to be able to read. If they can't read they will always be unable to work independently. So if you can get your child reading it will make a massive difference to their life. It's also a relatively easy skill, compared to some others, as it is gradual and repetative unlike maths which jumps from one topic to the other. We pushed and pushed our dd to learn to read and she is a competent reader and so can take part in lessons.

TotalChaos Fri 19-Aug-11 19:05:44

I found the worry about DS starting school worse than dealing with his actual SN at pre-school age, the patchy approach to early intervention does make you lose your confidence. As others have said, I have found a less "naice" school v good for DS, it's small and caring, so although it's not got a perfect handle on DS' SN, the general positive attitude and focus on language in foundation stage really made a difference. And being at a less "naice" school, there isn't a competitive vibe. THe pre-school SN experience is isolating - but your DS will not be the only kid in his class with some degree of SN (figure for some sort of language/speech problem is about 1 in 120 I believe).

Think its completely normal to lose your grip every so often, have a good wallow, then pick your self up in a day or three.

TotalChaos Fri 19-Aug-11 19:06:39

reading is v. helpful with improving language as well IME, as it's added visuals for new words iyswim.

bialystockandbloom Fri 19-Aug-11 19:36:39

I think the thing that's got to me recently is that ds has worked so hard and made such amazing progress, and we've been working so hard on getting him on a par with his peers with games, all the 4yo boy superhero stuff. He is soooo sociable and wants to play, but just gets it wrong. And I've realised some of other kids are realising he's different/odd etc. So I've just thought what's the f***ing point? Hard for him, a real strain for us (me, particularly), and it's still not going to be enough. Huge fear of course about 'big' school, bullying and all that.

But I know I am doing the right thing - this is just a mini-wallow, after what has been a really, really tough few months.

Thank you to everyone for all the amazingly supportive posts.

Sorry that some of you are also in a rubbish place atm. graciousenid I have felt exactly like you describe for weeks and weeks. It is really bloody hard doing this, and I don't know your situation, but I basically don't get support from anyone really, particularly emotionally. It's not bloody fair - on them, or on us. 99% of the time we have to hold everything together, but it's hard. And it's not like we know what we're doing (or is that just me grin). Every day brings new, unchartered territory, and there is no-one to tell us what to do (except for our ABA team who we have to pay to help us). NOT FAIR!! <<stamps>>

On a more practical note, thank you TC and daisysue for the tip about reading!

FauxFox Fri 19-Aug-11 20:19:00

Don't be too quick to think the other kids at school won't want to be his friend - DS is going into year 2 in Sept, has ASD and has a girlfriend who has loved him since day 1 and refuses to be put off by his lack of interest and chases/tickles/cuddles him all the time. It took over a year for him to reciprocate but he says hello to her now and responds to her questions smile He has been invited to plenty of Birthday parties and has quite a few other boys who are willing to come for a playdate and say hi to him if we see them at the park etc. We are doing a holiday club thing and one of the boys there who was a bit of a tearaway and suddenly started taking an interest in DS (to my surprise) he then asked me if DS "had that dumb thing" same as his older sister and proceeded to try and help DS do basketball dribbling! The world is not as cruel as you might think.
Good luck with everything x

bialystockandbloom Fri 19-Aug-11 20:48:54

fauxfox how lovely smile

EllenJaneisnotmyname Fri 19-Aug-11 20:59:33

Yeah, a bit of 'mothering' isn't to be sniffed at. smile

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