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Pretending not to be bovvered

(35 Posts)
nenevomito Mon 01-Aug-11 22:18:54

Tomorrow I have our first appointment with the paediatrician. DH forgot, so its just me going alone with DS. I am pretending not to be worried.

I am worried that he'll act 'normal' all the way through so they send us away without help. This is boy who had a melt down and tried to hide himself under my shirt as he was "scared of the people" when we went somewhere crowded.

Is it wrong that I want him to have a 'bad day'?

It doesn't help that the GPs wanted to know why I was bothering to take him as they are still firmly in the "nothing wrong" camp.

I'm tired and need to go to bed now. Just wanted to get that off my chest.

BialystockandBloom Mon 01-Aug-11 22:36:13

Good luck babyheave.

It's horrid. At our social communication clinic appt (where ds got his dx) I was actually the opposite, and half hoping he'd be having a good day and I'd be dismissed as an over-anxious parent. (Sadly not the case.)

Just make sure you remember to say everything you want to raise, all the issues, even if ds isn't presenting them at the time.

I know others have had different experiences, but ime the initial paed visit seemed pretty superficial but we still got referred to the social comm clinic - largely due to our views as parents, plus the concerns of nursery. Push for a further referral if you think he needs it - don't be fobbed off.

Hope it goes as well as can be expected - let us know. Good luck smile

InfestationofLannisters Mon 01-Aug-11 22:40:45

No it is not wrong to want your DS to have a bad day. At all.

Sleep well and good luck tomorrow.

alowVeraWithPurpleTwuntyPants Mon 01-Aug-11 22:51:29

Good luck.

No not unreasonable, I had portage come round last week for an initial visit and dd was an absolute darling. I felt slightly terrible saying "this is not like her I swear".
Luckily they are trained to know what they are looking for. The peads especially.

purplepeopleater Mon 01-Aug-11 22:52:49

No its not at all wrong in wanting your DS to show his colours smile

Good luck tomorrow got everything crossed for you x

insanityscatching Tue 02-Aug-11 07:41:09

Hope the appointment goes well today.

auntevil Tue 02-Aug-11 08:57:13

Babyheave - hope all goes well/badly. Like alowVera says, 'they' know what signs they are looking for. I had a home assessment recently where my DS was quite restrained and perfectly behaved - then got up, knelt on the coffee table and put his head on the floor.

TheNinjaGooseIsOnAMission Tue 02-Aug-11 09:05:29

hope all goes well babyheave

IndigoBell Tue 02-Aug-11 09:07:14

Good luck.

Have you written a list of his 'quirks' so you don't forget to mention any?

Message withdrawn at poster's request.

nenevomito Tue 02-Aug-11 13:43:24

Well I am back.

DS didn't have a bad day. He was having a good day. However the paed said "its obvious that he is on the spectrum". God knows what she would have said if he was having a bad day then.

She was lovely, but very blunt. He has, (now how did she put it), difficulties that are apparent and consistent with an Autistic Spectrum Disorder. He has ASD. Its obvious he has ASD. It is high functioning, but he's Autistic and there's absolutely nothing I can do about it.

I can't change it, I can't get rid of it, I can't pretend its not happening. All of the "we think that" and "we think it suggests that" and "But we can't diagnose that", which we've had so far from people who can't diagnose, but still gave you the little glimmer of hope that maybe there was nothing wrong and it was going to go away has been blown away by the paediatrician who can diagnose, stating, very starkly that he has Autism.

So I've signed the form that agrees for the multi-disciplinary team to meet and confirm said diagnosis. She said there was nothing that could be argued with on any of the assessment tests or evidence to say that it wasn't ASD and that it would be passed as such. I am guessing she wouldn't say that if there was any doubt at all.

So officially: My son has ASD.

I called my DH who said "why are you upset, its not unexpected, you knew it was going to be that". Knobber. Maybe if he'd have been the one sitting though the assessment he wouldn't be so bloody blasé about it. Maybe I am being harsh though and its just his knobbish way of dealing with it.

On the bright side, my DM was waiting outside and I got her to come in so she had to listen to the paed. The Paed took her through it and was very blunt again that he was autistic and there is no argument. I think, at least, now she will start to accept it as well and will be on my side a bit more so I am not having to deal with her denial.

So there you go. It doesn't matter if you expect it. Its still a kick in the guts when it happens, regardless.

EllenJaneisnotmyname Tue 02-Aug-11 14:04:16

Oh babyheave. I'm sorry that last bit of hope has been extinguished. Like you say, even though you expected it and wanted him to play up and show all his behaviours, it's still horrible to actually be told. I 'knew' months before DS's DX but still cried when I got home.

Your DH is coping with it differently, I expect he will understand how you feel, he may need a little help. smile

Do you have anyone to talk to, just have a cup of tea with? We're here with virtual brew biscuit and tissues.

StarlightMcKenzie Tue 02-Aug-11 14:20:25

What I usually say on threads like this is that a slap in the face doesn't hurt any less because it was expected.

Your Dh sound better than most tbh. Men seem to have trouble accepting there is any problem with their offspring as it casts doubts over their virility or something. And your DM seem great too. Given that so much of the prognosis tends to be linked to parental accePtance and input your ds is very lucky.

BialystockandBloom Tue 02-Aug-11 14:39:40

It doesn't matter if you expect it. Its still a kick in the guts when it happens, regardless.

Too true. I'm sorry. It sucks.

But there comes a point when at least some of the time you can tell yourself that having ASD is kind of like wearing glasses or being left-handed. It means you are a certain way, and life and the environment (and people) around you have to accommodate that, but doesn't mean that's all that you're about.

He is still your lovely little boy. Having a diagnosis doesn't change who he is, it simply gives a description of behaviours in recognised terminology.

The other thing to bear in mind is that at this stage there is no way you can predict a longer term prognosis.

DHs are almost unaminously knobbers at times like this. Nearly a year after dx and my DP still talks about ds's future like he's somehow going to 'recover'. Despite ds pfn in some circumstances, and despite learning mechanisms for coping and learning, he still has autism and always will.

Next thing is looking into what you can do to help ds. But one step at a time. Have a great big brew or wine.

coff33pot Tue 02-Aug-11 14:52:08

Babyheave I am really sorry and send you the biggest hug and a double baileys to go with it.

It isnt easy hearing that your child has ASD from a proffesional even though you know deep down what the answer was going to be x I have been told so many times that it is likely DS has AS but I still bawl my eyes out everytime an appt letter comes in the post. I really feel for you right now.

With regards to DH...........it will be his way I expect. I am the worrier and DH just says no need to deal with an issue till it arises and shrugs it off. But I can tell you at the pead appointment I had when she said she was referring him to OT and that he is likely to get his statement I saw the relief flicker in his face and he picked up DS and hugged him tight. That was the only reaction I have seen to all this and was just a few seconds. He is shutters down again. I think its a man thing. Its happened, thats how it is, so we get on with it sort of feeling.

Its good that your Mum heard and the pead took the time to explain. At least now it has been spelt out for her by a proffessional and its not up to you to break the news and it was great that she was outside waiting for you. Take it easy and pamper yourself later. Doors have now been opened to help your DS x

nenevomito Tue 02-Aug-11 20:23:03

Well I am feeling pretty let down at the moment. By my DH who is absolutely fine - he said that it was a relief for him as we already knew so doesn't seem to get at all why I'm upset.

However the prize for the worst reaction goes to my so called friend who I text from work to update her and her response?

Cool :-) - followed by a non-relevant question.

When I checked (just in case she'd misunderstood) no, she'd understood. Just shock how anyone can think that's a good response.

I'm not going to contact her again until I've calmed down so won't make things worse.

StarlightMcKenzie Tue 02-Aug-11 20:36:08

SN is something that happens to other people. You would not believe the range of responses I had from people I needed support from. It was possibly well meant and the result of feeling at a loss what to say but still.....

StarlightMcKenzie Tue 02-Aug-11 20:39:37

When well meaning friends try to point out the bright side of discovering your child has ASD they often develop a romantic vision of a millionnaire' success from being good at computers/painting/engineering/accountancy whatever and sell your child to you as a lucky pension. hmm

EllenJaneisnotmyname Tue 02-Aug-11 20:42:14

Just deleted a load of nonsense about why she might think it's a 'good thing' but it all sounded so trite that I gave up. Needless to say, she doesn't understand the implications. You'll have to pin your DH down at some point soon and explain how you are feeling and why.

We understand. It's not going to go away but it will get better, he will continue to develop and will continue to amaze you. Every small piece of progress he makes will be so celebrated and doubly precious. I hope you remember that you are allowed to be upset. It was 8 years ago for me but I can remember it like it was yesterday. But it really does get better.

StarlightMcKenzie Tue 02-Aug-11 20:53:08

Yes and ASD is a develo

nenevomito Tue 02-Aug-11 20:53:34

Strangely the best response from folk in RL was from my boss, who I would just like to say was absolutely brilliant in the face of the gibbering wreck that faced him this afternoon. He got it.

Its the finality of being told that your child absoltely definitely positively has SN and there is absolutely sod all you can do about it.

Starlight - yes that seems to be the stock 'pat on the head' response. I'm not going to keep a tally of how many people have said it as it would be too depressing.

Ellen - Her response was that it was a good thing as he could get help, which is all very well, but it doesn't help with the fact that I don't want him to have it in the first place.

I will be OK. Right up until the next meeting, probably!

barbiegrows Tue 02-Aug-11 20:58:25

Hi Babyheave -

I can understand that this diagnosis has been a shock to you, even if you half expected it, it will still bring you down to earth with a thump. When my dd was diagnosed part of me was very RELIEVED. At last I had an explanation of what was going wrong - why she couldn't do things and why she did things she should't do all the time.

The system is kind of set up to make sure that a medical diagnosis is what determines who your child is. ASD is a label, it means your child's brain works a certain kind of way. Essentially he is defined by WHO he is, not WHAT he is. You know that, I know you know that, but I'm just reminding you because at times you will wonder why other people don't.

And yes, men don't deal with disability in offspring well, don't expect too much from DP. Sorry to have to say that but there are statistics. How old is DS by the way?

Try looking up the "social model of disabiity" and you may gain some strength.

Also, another handy hint - don't talk about DS's issues in front of him. I see countless parents do that. Not good.

BialystockandBloom Tue 02-Aug-11 20:59:58

<thunk as jaw hits floor>

That has to be the most bizarre reaction I've heard. What on earth can possibly be cool about your child having autism??

Like everyone here, when it turns out your dc has SN, you do discover who cares, who doesn't care, who tries to support even if misguidedly, and who genuinely does support, but that comes into a category all of its own. Silly cow.

You know that we all know how you're feeling. Virtual support not the same I know only too well, but can be crucial at times.

Agree that DH needs to be kicked into a helpful shape.

barbiegrows Tue 02-Aug-11 21:15:12

Somebody said having autism is 'cool'?

I have been involved with many children with autism over the years and seen them develop through childhood. One that springs to mind was completely non-verbal at 5, but now at 11 he knows his times tables like the rest of them, went on the school journey, etc. Things can get better with the right help.

TalesOfTheUnexpected Tue 02-Aug-11 21:26:36

Hi Babyheave

As others as said, it's both a relief and a kick in the teeth to have something like this confirmed. Sometimes, people just don't know what to say. They don't know how to deal with it, so they say stupid things and put their foot in it.

People forget that you long for a baby, they are born, you are thankful they have all their fingers and toes. Never does it cross your mind until later that something else might be wrong. It's a right wallopping blow and a diagnosis does not make it better.

Prepare yourself for the ever-so helpful friends that will say (after spending all of 5 minutes with your child) "well, he seems ok to me". I just want to punch them in the face! So far I've resisted my urges and it has got easier.

As for your DH, well, I'm no expert in that particular department so I'll keep my nose out.

You're on the right track. It's devastating, but you can get through this and it's ok to feel sad.

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