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Am I seeing something that isn't there? All advice/opinion gratefully received.

100 replies

RandallFloyd · 18/02/2014 19:52

Ok, DS is 2.6. He's lovely, lively, funny, is average at talking and sleeps well. He was a little bit late at sitting/crawling/walking but all within 'normal'.

I just have a gut feeling that I can't shake. I've had it since around 12 months but it's really hard to describe why without sounding like your average PFB'er. (Which I freely admit I am!) I've looked at the mchat test but it's difficult to put the way he is into yes/no tick boxes iyswim.

He doesn't like people; adults or children makes no difference. He finds himself a safe place, usually behind a sofa or in a corner, and watches. Then comes out slowly when he's ready. He's ok once he gets to know them but even after a couple of hours I can't leave the room even for a minute. He's fine with close family though.

He's brilliant at independent play, happily amuses himself for most of the day. He plays 'pretend' but it's acting out scenes from cartoons he's watched rather than abstract imagination.

His favourite toys are his Alphablocks and his numbers. He will play with other things but the letters/numbers are always involved. In all honesty I don't think he'd care if I got rid of everything else. He spends his time lining things up and arranging them in order.

He spells out short words but these are ones he's seen on Alphablocks episodes so not 'spelling' as such. Usually 3, 4 or 5 letters but he also spells out 'alphablocks' and 'alphabet'. He has some flash cards and can sound out most 3 and 4 letter words. Once he's laid his things out he gets very upset if you move them or if they fall over. Very upset.

He flaps his hands when he's excited. This can be for any reason, a song, a cartoon, reading a story or just whilst he's playing.

Bloody hell, that's already an essay Blush there's more, but if anyone can be arsed getting through that lot for now I'd be more than grateful!

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PolterGoose · 08/03/2014 18:04

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RandallFloyd · 08/03/2014 18:15

Evolution? Blimey, I'd have to do some serious studying to have that conversation!

I'm not looking forward to what's coming but it will be nice to not have to politely smile & nod when people tell me I've made him clingy by 'never letting him out of my sight'. And that I just need to take him to a mothers and toddlers a few times Hmm

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Levi174517 · 08/03/2014 19:03

I know everyone is entitled to their opinion but people who say you made your son clingy aren't worth listening to. You give your son the unconditional support he needs. There isn't a one size fits all approach to parenting - you are right do what's right for you and your child.

There will always be someone with no experience of your problems who knows best and doesn't mind telling you how it supposedly is. Ignore, ignore, ignite.

Levi174517 · 08/03/2014 19:04

Oops. That's a typo. It's meant to be three ignores. Setting them on fire might be a bit extreme no matter how sanctimonious they're being.

RandallFloyd · 08/03/2014 19:11

Arf @ ignite them Grin

None of my friends have children unfortunately so I get a lot of rather helpful advice from them. Its also a widely known fact that me not being able to leave DS with anyone other than XDH is because I'm such a martyr.

I've given up arguing, it just digs me in deeper, I just change the subject.

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RandallFloyd · 11/03/2014 20:07

Shit, now it really is real.
Why am I feeling so anxious?

I'm as prepared as I can be; I've done tons of reading and research; I've got loads of notes; I'm seeing a good, approachable GP; I know I'm not leaving there without a referral. So why am I shaking like a shitting dog?

My stomach is in knots. I may have to resort to wine at this rate!

(I'm not usually given to such melodramatics honestly Blush)

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PolterGoose · 11/03/2014 20:46

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RandallFloyd · 11/03/2014 21:01

Thank you Smile
Times like this being an LP sucks eggs.

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PolterGoose · 11/03/2014 21:05

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RandallFloyd · 11/03/2014 21:20

Thanks Polter, that's really kind of you.

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AlarmOnSnooze · 11/03/2014 21:39

Good luck tomorrow, Randall ('tis NBC). I hope all goes well.

RandallFloyd · 11/03/2014 22:15

Thank you.
Love the new name!

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AlarmOnSnooze · 11/03/2014 22:22

It's my dream wish at the moment! Have a coursework deadline (which is why I'm on here Grin) and have got dd2's first assessment on Thursday - that'll be all 3 of mine in the system then! Snatching 5 more minutes in bed is just Not Happening...

RandallFloyd · 11/03/2014 22:46

Blimey, that's a pretty full schedule there!

How long did you wait for the assessment once you'd been referred?

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AlarmOnSnooze · 11/03/2014 22:55

We're going private for dd2 as she is so subtle that we wouldn't get anywhere with nhs route. we were lucky, and called up in January and got an appt for March, so not too long a wait (we've been 'watching and waiting' with dd2 since she was about 18 months - she's 7 now!)

basically, her schoolwork is beginning to be affected (scores off the scale and G&T across most areas, yet her actual work output in class puts her in the catch-up stakes and she is now in the lowest groups for maths and topic work) and so it is time to see what can be done for her.

RandallFloyd · 11/03/2014 23:16

That sounds tough for her. It's good she's got the advantage of your knowledge and experience behind her, sounds like she could have easily slipped thought the next otherwise. You obviously know your stuff, you could probably tell the doctors what to do!

Good luck. Fingers crossed it gets her access to the best support she can get as soon as possible.

Private isn't an option for us unfortunately so we're stuck with the good old NHS Wales. I can't complain as we're very lucky to have such a system but lord knows it's not jet propelled!

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AlarmOnSnooze · 12/03/2014 01:09

No, jet propelled is not how I would describe it! I remember the waiting with dd1 (and am in the middle of it now with ds) - frustrating, but there are ways around some of it (basically, make yourself the nicest, politest, pain-in-the-arse possible, and keep pestering 'checking' that you haven't fallen off the bottom of waiting lists - sometimes, this can have remarkable results in gaining last-minute cancellation appts Grin)

dd2 will be ok. for now. we've gone private because 1) we've waited long enough umming and ahhing about her and 2) would ideally like some answers before she starts Key Stage 2 in September, since this is when academic stuff will ramp up another notch. She may well still slip through the net (and her school certainly think we are bonkers for thinking something is 'up'), but we have managed to get the best person for the job on the case (experienced in high functioning, subtle cases, and most importantly how ASD presents in girls) so we are doing all we can - which is all that each of us can do.

Hope tomorrow's appt goes well for you.

Levi174517 · 12/03/2014 01:18

Hope all goes well. I'll be interested to hear how things go.

We've got an appointment on Friday to get DD referred for possible ASD. Initially it was DH who made the appointment but it seems I'm quite high up the Control Freak Spectrum so I'm going too. I only trust myself to make sure the GP knows all DD's ASD traits.

Good Luck Smile

RandallFloyd · 12/03/2014 10:08

Well it went better than expected.

She did labour the fact that he's 'only 2' and she was keen to tell me that he's by far the youngest child she's ever referred, but we got the referral so that's all that matters.

She listened to everything I said and took a lot of notes. She also said that coincidentally she's been doing a lot of reading about Aspergers recently and that the sites I mentioned looking at were, in her opinion, pretty good.

The main thing I was pleased with was that she told me it was obvious I'd done lots of reading and I obviously understood what I'd read. She was careful not to give her own opinion but she really gave the impression that she took me seriously.

She's referred him to the community paediatrician and also is going to report it to the HV (who I don't have much confidence in but I'll take whatever I can get!) so I guess now we just wait.

Thank you all so much for all your help. If I hadn't taken in a list I would have forgotten to mention so many important things. I waffled on about his speech for so long that I almost didn't mention his stims at all!

If it wasn't for all your help there's no way we would have got here, I honestly can't thank you enough Thanks

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PolterGoose · 12/03/2014 10:13

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AlarmOnSnooze · 12/03/2014 11:10

well done Randall. First hurdle over. Definitely time for Brew and Cake

RandallFloyd · 12/03/2014 11:57

Thank you, I couldn't have done it without you Thanks

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Levi174517 · 12/03/2014 12:01
Grin

So happy for you. Glad the GP listened to you.

Brew and Cake now Smile

LithaR · 14/03/2014 19:45

I'm so glad you posted this thread. Not to gate crash but I've had these same vibes about my own ds. Trying to get help for him has only resulted in language and speech therapy referral that I'm still waiting on. He's four now and its becoming more obvious to me that something isn't as it should be. Luckily at least his school has been more proactive but having read this thread I feel I need to push for more from the doctors.

Thank you OP Thanks

RandallFloyd · 15/03/2014 08:29

I would say trust your instincts. You know him better than anyone else. Go back to the doctor and tell them everything, surely they can't ignore you if the school is on-side too.

The way I see it, if there's nothing wrong then no harm done but why take the change of missing something? I get a lot of 'well, they're all so different aren't they' type of comments, but actually no, they're not. Development is a hell of a lot more text book than I ever thought it was. There are small variations, of course there are, but on the whole it follows a pretty standard pattern.

I don't know why people, professionals included, are so insistent on denying these types of issues. If it was physical they wouldn't. If your 2yo wasn't walking they'd be doing something straight away but you tell them he isn't making eye contact and they dismiss it out of hand. It's so frustrating.

If it wasn't for the help I've had on here there's no way I'd have had the confidence to talk to the doctor like I did and I can almost guarantee I'd have left there with a 'he's very young, let's see how he is in a year' type of response. Thanks to MN I went in knowing I wasn't leaving without a referral and I think the doctor felt that too! There's still a long way to go and I'm quite sure it was the first of many hurdles but it's really given me the confidence to keep going.

There's no way I'm knowledgable enough to give advice but what worked for me (as I was advised to upthread) was doing lots of research and learning the proper medical terms for things. The doctor's attitude changed completely when I started talking in her language.

The help I've had on this thread really has been invaluable, I couldn't be more grateful, I'm so glad it's helped someone else too.

Good luck, let us know how you get on Smile

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