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Here are some suggested organisations that offer expert advice on special needs.

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42 replies

BeyondTheVirtualActivist · 28/04/2014 15:42

HV came today for DS2s 2 year check. I gave all of my concerns re both of them and she agreed that she can see my concerns but imagines in ds2 it is all frustration due to his lack of speech and then normal toddler/brotherly behaviour for the rest. She has agreed to come back in a couple of months and see how we're getting on though, which is something.

I'm gonna take a wild stab in the dark that this minimising isnt uncommon for everyone here?

And I've had a thought. Do you think it will be easier to put across my worries if i get my concerns about my own aspergers confirmed, so i can say "i know this shows xyz because i do it?"

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BeyondTheVirtualActivist · 28/04/2014 15:52

Just so its all in one place Grin

DS2
Late to wave
Speech - nothing til march, only a few words now. No sentences.
Screaming
Doesnt call me mum or DH dad (my mum nan etc) first names for all but me
Almighty tantrums
Plays alongside other children, completely disinterested in them
Very independant, wants to do everything himself
Doesnt ask or point for things he wants, he pulls (if he can do it himself he will)
Ignores me calling or asking him to do something
Head banging - since he first bum-shuffled along
Biting himself, other people, things
Fighting. Cant believe how violent they both are
Hypermobile anyway and clumsy
Grinds his teeth
Rubs things between his fingers and rubs bare feet on things

For ds1
Best talking to adults, disinterested in children, plays alongside too
He talks so loudly!
Chewing things - emery boards, paper
Ignoring me
Tantrums. Not so epic as DS2's, but over the tiniest thing
Obsessed - will watch one thing on a loop on netflix, play on his tablet all day
Again, hypermobile and clumsy

DH, for someone who thinks im paranoid, has seen the gp himself to query adhd. Gp says she doesnt believe adults can have it and sent him on his way.

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PolterGoose · 28/04/2014 16:19

This reply has been deleted

Message withdrawn at poster's request.

BeyondTheVirtualActivist · 28/04/2014 16:31

Sounds silly but i'm wary of what to see my gp about as i'm there so often. I only this week asked for a genetics referral for me and ds1 for our hypermobility. Shes good, and pretty much accepts my self diagnosis and refers to whatever i ask for me, but i'm worried that (even though everything i see her for is confirmed) she'll think i'm just melodramatic.

Have done mchat for ds2 and it comes up as risk of autism. Guess ds1 is too old for it though? (He's 3.6)

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PolterGoose · 28/04/2014 16:33

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BeyondTheVirtualActivist · 28/04/2014 16:34

She has said that for now as ds2 does understand other people taking, to take him to a p&t speech group that is run by the hvs, rather than refer to salt.

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BeyondTheVirtualActivist · 28/04/2014 16:34

Thats the hv btw, not the gp

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NeverendingPotato · 28/04/2014 16:40

I was fobbed off at ds2's two year check and ended up just going to the GP, I took along a highlighted print out of the m-chat as well so she could see where the concerns were, but was of the impression if I thought there was something then it should be looked at.

NiceCupOfTeaAndASitDown · 28/04/2014 16:51

I was also fobbed off at DS's 2 year check, looking back at my list of concerns (he's 3.2 now) they all pointed in the direction I think we're heading but I didn't know what I was looking for - like pp say keep a diary and do as much reading here, online and in books as you can. it sounds like you have a good GP but another way in is to see a SALT - I recently went to a drop-in (SALT not HV run) and after voicing my concerns DS has been referred for a multidisciplinary assessment. it was such a relief to talk to someone who understood where I was coming from (DS has brilliant speech but non-verbal and social communication is odd and he repeats things he's heard a lot) - could this be an option for you? I just looked up the services in my area online and turned up. otherwise you should just be able to ask your GP for a referral to a developmental pediatrician with a brief summary of your concerns. I think it's fairly normal for people to have an idea of what they're presenting with when they see their Doctor these days, especially when it comes to their DC Grin

chocgalore · 28/04/2014 17:36

Do the M-chat as see if it flags anything up.If it does, then take it to GP and ask for referral to dev paed. Sideline the HV (I wasted a year dealing with our HV before I got referred voa GP)

Get a hearing test sorted just to rule out any hearing issue (glue ear etc).

BeyondTheVirtualActivist · 28/04/2014 17:50

Just did the mchat for ds1 too, even though he's older than I'd guess it works for and he still came out as medium risk.

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BeyondTheVirtualActivist · 28/04/2014 18:24

Oh balls. Realised i forgot to mention that ds2 doesnt seem to feel heat. He'll climb into my hot bath no probs and can eat vindaloo!

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chocgalore · 28/04/2014 18:35

make an appointment with the GP take mchat with you and insist on referral

MiniSoksMakeHardWork · 29/04/2014 11:03

Our referral was put in by gp. Hv put everything ds1 did/does down to the arrival of dts when he was nearly 2. Despite me raising concerns since way before then. It's only been since seeing paeds and others that Hv has finally caved into doing a caf for us. I still think they are reluctant as so far everyone we've asked to be invited has not been - children's centre and home start coordinator.

Book a double appointment when you do go and see them. At least then it gives you plenty of time and you can always book a follow up if needed.

BeyondTheVirtualActivist · 29/04/2014 11:45

I will see the gp, going to keep track of behaviours and stuff for a bit first though, so i have my side ready prepared.

Me: "ds1 will you please leave the poor fish alone"
Ds1: "the fish are not poor, we have got money"

Just said it right now, otherwise i probably wouldnt have noticed. Should it go on my list or is that paranoia talking?

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BeyondTheVirtualActivist · 29/04/2014 11:47

By the way, the way i'm thinking i'll approach it with ds1s nursery, is that i have suspected asd and have noticed some similar behaviours to mine in ds1, so could they keep a special eye on it. That sound sensible?

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BeyondTheVirtualActivist · 29/04/2014 16:05

Re ds1s chewing, is it worth getting any of the sensory chew toy things? Or any recommendations for something bette? He also sucks the necks of his t shirts.

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BeyondTheVirtualActivist · 29/04/2014 16:07

Another btw... HV said chewing is common in a 3.6 year old and "called something but cant remember what". I'm assuming she means pica?

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BeyondTheVirtualActivist · 29/04/2014 16:53

Another thing re ds1 (just putting everything in this thread so i know where it all is)

He doesnt listen to people telling him they dont want to be cuddled, will keep squeezing ds2 even when he cries and climbs on me when i ask him not to too.

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BeyondTheVirtualActivist · 29/04/2014 16:56

Oh and (sorry for a million posts!) one more thing re ds2 and heat perception. He was drinking tap water earlier and told me it was hot, and was blowing it.

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PolterGoose · 29/04/2014 19:09

This reply has been deleted

Message withdrawn at poster's request.

BeyondTheVirtualActivist · 29/04/2014 19:25

Nope, but thanks for the reminder, i did mean to post to ask for any reading recommendations :)

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WaveorCheer · 29/04/2014 19:30

You've put one of their names in the first post by accident, worth asking mnhq to remove?

BeyondTheVirtualActivist · 29/04/2014 19:31

Oops, cheers, I'll ask now :)

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WaveorCheer · 29/04/2014 19:31

I think you've got enough to approach to GP for a paed referral now tbh.

It will be a wait till you get a date, so you could use that time to start gathering evidence.

BeyondTheVirtualActivist · 29/04/2014 19:36

(No huge panic btw, their names are on my usual profile anyway)

Really, you think this is enough already? Thats quite a relief as i am really paranoid about being, well, paranoid. But i am not coping at the moment at all, so its quite a relief if people can see possible issues in what i've written already.

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