Still coming to terms with the "difference"

[theDudesmummy]

I know this exact thing has been mentioned many time on the SN threads, and I kind of even thought I was beyond this already, but yesterday we (DH and me) had a hard few moments regarding that harsh realisation of the "difference" between our DS/our life and other people's children/lives. I can't really moan, our DS is ASD and non-verbal but has no other apparent problems and I know there are many others on here with much much more difficult lives...
However...

We went yesterday to a lovely little cafe in a nearby park, where I have in fact been with DS before for a nice weekend brunch. It is enclosed so you can sit down and he can't run away very far etc. It is the kind of place where there are many happy families and yummy mummies with their babies and toddlers, all drinking babyccinos and lattes, or chardonnay, and eating organic food etc. Lots of kids running around and parents all looking relaxed. Well our DS started, as he sometimes does for no discernable reason, screaming and bashing his head hard on the concrete path. Gasps all around from the yummy mummies and "Oh my God" from one, lots of disapproving looks. Our food and coffee, which had just arrived and was untouched, was abandoned and we just picked him up and left, me in tears.

Don't get me wrong, I don't care about not being able to have the food and the coffee (obviously), or even really what anyone thinks of us per se. We did not leave because people disapproved, we left because it was unfair to the other customers: people were trying to have a nice brunch and having to see a child braining themselves on a slab of concrete and hearing unending high-pitched screaming is not conducive to a pleasant atmosphere. I was just upset by the difference of it all; the other toddlers all running around laughing in the sunshine, the parents sitting relaxed and chatting, and us bundling a screaming child with a bruised forehead out of the place with people staring at us. It is not what you imagine when you have a child, is it? I always imagined myself as one of the loving happy mummies sitting with my latte and indulgently watching my child playing happily in the sunshine and running up to me saying "mummy mummy".

I am being rather selfish and self-indugent aren't I? And sorry about the long post. But it is very hard sometimes (only recently diagnosed, still really coming to terms with it).

It is hard when "the difference" jumps up and hits you in the face. It's like being emotionallly winded!!!
It happens out of the blue even when you think you have come to terms with things.
Sorry you had your outing cut short - any idea what was the trigger for the meltdown?
I took my ds to the nurse of friday for a jab - had to carry him in kicking and screaming from the waiting room - he didn't want to leave the bead frame. We had to wait again after he had his jab and when it was time to leave he had a huge meltdown in the middle of the waiting room. Noone would make eye contact with me..............eventuallly he let me pick him up and then turned to the full waitng room, waved and said a really cute "Bye". ARGH!!!!!!!!

Yes it can be hard, thanks for the reply! The trigger on this occasion was probably something to do with me taking him off the table which he was insisting on standing on, but it can be anything (or nothing...well of course there always has to be a reason for behaviour, but it's not always possible to work it out, so leaving you going "what the hell did you do that for?", when everything seems all nice and going well and suddenly there is a bang and the head is being smacked on the wall or ground...)

We are just about to start an ABA home programme so I suppose I have some hope that things may start getting better at some point...

I think I have been too moany now! I suppose I felt that wicked stab of envy when looking at all the other familes in the cafe, and thinking "you have no idea, do you?" as they gave us "that look" and then turned smugly back to their perfectly behaved little children! ...I am over it now, I don't want their children,! They can keep them and I will keep mine thanks very much!

I find I have good days and bad days-every now and then I will have a moment where it hits me-I had one at the doctors last week too-DD was happy enough but just talking in jiberish and rolling on the floor, trying to talk to people but they didn't understand her and one or two looked embarassed/sorry for me.

In fact I avoided our school fete because I knew it would be one of those things that brought home the differences and am 8 and half months pregnant and couldn't face the stress of it all.

I am back to focusing on what I can do now-like you with the ABA, I find when I start looking at things that will help it usually means I am feeling more positive. But it is tough sometimes. I have found spending time with other mums of children with SN helps as I feel less alone. Don't know if that is an option for you but our area has a few groups I can go to and it has helped me find out more about local services.

Those moments just seem to hit you so hard, and when you are least prepared for it. I've had a few of them lately, simply because we're struggling right now.

I do find I have to push myself to think about positive stuff instead. And focus on what we can do, rather than can't.

(((thedudesmummy)))

in some ways, it gets easier as children get older. Because if an older child is in reins, or clearly non-verbal, or wearing ear defenders or stimming in some way, it's dead obvious to everyone that the family in question isn't in Kansas like everyone else.

The looks never stop, but one stops noticing them so much (if at all)

and every so often, someone (usually an older woman) comes up and says something so accepting, so supportive, so loving, that you are completely knocked sideways (and go home in tears - so that part doesn't change!)

Thanks for the nice replies. You all really do understand! I am not really as generally sorry for myself as I came across in my first post. I do accept where we are and who we are, and I don't go around wishing things were different on a conscious basis (I don't have the time to, especially now with the setting up of the programme on top of everything else, what a lot of work!). I don't really care if people stare, I have plenty else to focus on. This was just such a contrast moment between "us" and "them" (and until recently I would have been one of the them and not of the us if you know what I mean) that it hit me unexpectedly!

Yes Leonie I suppose I worry about that at bit. DS is only just nearly 3, and very small for his age, so the fact that he does not talk and behaves oddly does not really stand out so much yet. He looks like he could be only just two (he wears age 18-24 mth clothes), and he has a very cute and angelic look, so people mostly think he is really just a baby. I am not sure how I am going to feel when he is big and he is still doing these sorts of things (I can hope he won't be I suppose).

BTW I told my DH about a post I had read on MN where the parent said something (to a disapproving onlooker during a tantrum) like "oh, do you have a cure for autism then, please let me know what it is". He went and then said that to a man in the supermarket the next week! I am not sure I would have had the guts (unless I was feeling very cross).

Don't ever apologise for feeling like this. It's the most normal thing in the world. IME if you are kind to yourself and tell yourself you're having a very natural and understandable reaction to the cards you've been dealt then sad episodes pass a lot quicker than if you beat yourself up and add guilt and shame to the mix.

Ds1 is 5 and was diagnosed with asd at 2. He has had 3 years of ABA and is progressing very well, so much so that most of the time I am nothing but proud of him and his achievements. However, as leonie said, sometimes the pain hits me like a sledgehammer. Often when I'm least expecting it. It all feels so fucking unfair, and I feel completely overwhelmed and suffocated by the ways in which our lives are restricted and just different to those of everyone else I see around me.

In some ways it's easier now that ds1 is so much more obviously autistic, and I don't get the double takes from onlookers. But in other ways it's harder as the gap between him and his peers gets ever bigger. I see his peers playing in the playground when I go to collect dd and sometimes the pain is unbearable as I think of my largely non-verbal ds1, who has no interest in other children.

Also the older he gets (as well as his two siblings) I think of how our lives should have been getting progressively easier, but ds1 will likely always need a high level of supervision. And the future? I really, really try not to go there

God it hurts

But NOT all the time. Not even most of the time. The gaps between sad episodes have definitely become longer and longer. And there's the good news!

It's silly of me, but I actually inwardly rage at those adults that DS2 will cheerfully say "oh hello!" to when we're walking by and they completely blank him. It's usually just out and about in town that this happens, but how hard is it just to say "hello" to a child and smile nicely FFS. Because when they don't respond he'll repeat it a couple times. Makes me sad.

Lovely parents, students, and teachers for the most part at our school - almost all of them say "hello" to him and smile at him. (I'd say I don't know how everyone at the school knows him, but as he's shown up in practically every classroom at some point when he's left his own class, I'd say he's pretty well known there. )

I get you too Dude

I looked at other people's FB pictures today where their "perfect" children had spent the day at the beach while we haven't left the house since we got back at 10am yesterday. I was just saying to DH, I just want us to be "normal". That's not going to happen. That hurts.

Well done Leonie's DD! Triggles my DD says hello to everyone too! And similarly at school everyone seems to know her name Its lovely to be so friendly, I hate when people ignore her too.

used2bthin I do get itchy to smack those that roll their eyes or make pained faces or gawk at his Mac Major and whisper to someone next to them when he says "hello" when we walk by.

I know, I am same tbh! Also those people who tut when DD gets in their way by accident (well by virtue of being unaware of others around her but same effect)often I have said sorry then when they tut I will turn and tut back at them

Oh ((((dude)))), I get you. How are you feeling now? I hope you have had some chocolate or wine and enjoyed your boy for the rest of today,

I have this, much more rarely now, as DS has mild learning difficulties as well as a life limiting medical condition.

It's always the christmas play that gets me. I will stand at the back of his school in absolute floods and for those times, I cannot stand all the ordinary parents and children in the room, who don't have to endure what DS does just to be alive. Other parents always think I'm overly PFB. If only they knew.

Your boy is amazing for a million reasons and more, I don't need to tell you that. But acute differences always hurt, but it will lessen over time.

Hi Dude's Mummy, your post resonates with me so much. I wouldn't change one atom of DD (3.4) at all, but the differences between her and her peers are becoming more acute. I met a neighbour of my parents yesterday, whose child will be at pre-school with DD in Sept. She asked my DD some very age-appropriate questions about it, and told her how much her DC was looking forward to starting school etc - all very lovely , but completely over my DD's head!

I sooooo get you the dudesmummy. You are certainly not 'selfish or self-indulgent' - in my experience mums with DC with an SEN are the least selfish people around. I have 2 DS, DS1(5) with ASD and learning difficulties and DS2 (2.9) currently waited for final stage of ASD assessment.

I admit I got very depressed when DS2 started showing some signs because I had been so looking forward to being one of those mummies who didn't need to worry and could enjoy all those simple wee things like trips to the park, cafe without it being a nightmare experience. I have really struggled at times with the same feelings as you, although I must admit I have felt real anger and bitterness at times, especially for mums who don't seem to appreciate what they have.

But I have realised it is a very long road ahead and no one knows what the future holds for our children or anyone else's children. We just have to do our very best. Also be good to yourself, treat yourself to wine, chocolates etc., wahtever helps you feel a bit better because you will have plenty of your own happy mummy moments ahead too, I promise!

Also, thedudesmummy, I forgot to say that I feel a million times happier and more positive since recently starting an ABA progamme with DS2 (2.9) (similar age to your DS). I know its not going to be a quick fix but I've been busy meeting tutors, getting room set up, materials ready and it feels good to be doing something practical every day that will help. Before that, I kept watching him every day, analysing his behaviour, comparing him to his peers etc. Now I've just accepted he has difficulties in certain areas and we are all going to work hard on improving these.

Hopefully focusing on this this will help you too. Hope you are being good to yourself and having a happier day with your DS today!

What lovely people are on this thread! I have recovered my equilibrium now (and yes both chocolate and wine were involved over the weekend!), and this thread has really helped! My DS is just lovely and he has the best laugh/giggle in the world, which occurs far more often than the sceaming. I need to keep remembering that. I also feel very positive about the ABA programme (CalinRua I will PM you if I may).

Havent had tmie to read thread (sorry) but - its not selfish or self-indulgent. It just bloody hurts.