DS' 2 year check with HV - big elephant in the room...

[DameGladys]

...was obviously ASD.

His 2nd birthday was 2 weeks ago. He's not talking though makes lots of sounds. He has a reasonably long list of nouns but not using them consistently or even particularly meaningfully. They're mispronounced or idiosyncratic and not terribly consistent.

The main worry, I think, is his understanding. She asked if he could be asked to, for eg, go and pick up a toy and bring it to me. I nearly laughed as he's so far from being able to do that. He doesn't really respond to his name . What I find odd is that he doesn't ask for anything - no 'I'm hungry/thirsty' or equivalent.

There's loads more of course though also lots of things that are less consistent with ASD. I expected most of it but the one thing that got me was her concern about his walking on tiptoe (he's always done this). I had somehow missed that this can be associated with ASD. However, he doesn't show any other indications of hypersensitivity - very touchy feely and huggy and loves physical stuff. More verging on hypotactility if there is such a thing.

Ok, now I'm not sure why I'm posting this. I have no idea what I want anyone to say. I just feel a bit all over the place and want to speak to others who have been in similar positions.

He's been referred for speech and language and to see someone (again) about the tiptoe walking. But I guess I just feel like I should be doing something in the meantime. How can I help him? I don't feel like I'm up to it tbh - especially when reading old threads on here where you all have be so clued-up and assertive. Help.

If does not request verbally or otherwise - PECS might be worth a try. You could google PECS and get lots of info - or try to see if you can go a training course ? Don't let anyone put you off by saying it's too soon. You need to get some communication started. My DS1 was similar at 2 - but he requests verbally incessantly now ! PECS wasn't a good fit for us actually but every child is different and it is mainly for children who don't request (yet)

Thanks very much. I'll have a look now.

My DS1 was very much as you describe in your OP at 2 (he is now 4.8), and you are ahead of where I was ( was convinced DS1 could understand instructions when he really couldn't).

You may find the Hanen Book More than Words useful - it does focus on ASD but even if your son isn't on the spectrum it is a good book wrt helping extend a child's understanding and encouraging requests etc. I was fortunate to be lent one on a course I went on, but may be worth asking your HV if she can track one down for you to borrow before you buy.

How long is the wait for Speech & Language Therapy? If it is very long and finances permit it may be worth getting a private SALT to assess him, if only so you can get some advice now - www.helpwithtalking.com/.

DS1 had a sensory assessment by an Occupational Therapist and she said a child can be over and under-sensitive to different things so if you can get on a waiting list for a sensory assessment I would.

Hanen is a life saver. It really helped us to learn how to help ds1

Also worth getting on a list for a hearing test.

Thanks all. This must be affecting me more than I'm pretending as I'm crying just at the fact that you're all replying. I don't cry much these days usually.

I know a little about ASD from lurking on here, doing a bit of research since I started having concerns a few months ago and also some research I did a while back when the penny dropped about myself and other members of my family and their Aspergic traits .

I've got to go out to lunch now but will be back later to go through all your recommendations in slow pedantic detail as is my wont .

I'll post a bit more about what the HV said too. Basically apart from the SALT referral she just wants to see him again in about 3 months to see what's changed if anything. Oh yes and the tiptoe thing which is now going to be an appointment with 'surgical instruments' presumably to get some kind of insoles.

I'm so thankful for mumsnet honestly.

I agree with Starlight, little point in waiting 3 months to then quite likely get referred onto a paediatrician's waiting list. You can always cancel the appt if you feel it isn't necessary by the time it comes round, and it is always your choice whether you wish to proceed with any kind of dx. I'm glad we got the dx for DS1 but appreciate not everyone wants to go ahead with one.

Also agree on the crying - go easy on yourself.

dont wait we did that once with community paed 3 months later i demanded consultant there and community wanted to leave again she over ruled him.Mind not that she got ds dx right bu it was wnough to start getting him some help for nursery etc

I agree with everyone else. I would ask for a referral to see a Paed rather than wait another 3mths for the HV to see him again.

The physical, touchy feely stuff sounds like my ds2. He almost craves strong physical contact, whereas his older brother avoids it like the plague.

You've had some great advice, already, so I'll not waffle on. Kids on the spectrum can also be hyposensitive to touch and movement, or a mixture. DS1 is very much into whirling around and bouncing off the walls, touching everything with as much of his body as possible and giving and asking for great big bear hugs and squeezes.

And it's really not too early. We asked for a referral for DS2 around 20 months, when it was clear his development wasn't in line with what it should be.

I will add, in case it's not been mentioned, that it might be worth asking for a referral to portage - they can help you with play skills, for example, and with motivating toys for if you want to work on communication etc.

Dd2 was referred at her 2 year check up (first to SALT), she was diagnosed when she was 3. We have been very lucky as dd2 was referred to a SN nursery by the SALT when she was 3, the nursery introduced her to PECS and music therapy, she's now 4.3 and talking, asking for things and will complete very basic commands. She's still 1.5 years behind with speech and understanding but she can communicate with us now (which is great).

I have 2 dd's on the spectrum, one is very cuddly (dd2) and the other isn't. Dd2 has just started saying 'big squeezy cuddles' to me and loves preasure/strong physical contact.

Just to agree with what has already been said.

On a more personal note.. None of us were clues up and assertive when we started out .. So don't worry about that bit.. You'll get to the point very quickly where you are helping others, looking back and suddenly realising you seem to know huge amounts about it and that you know far more about what your child needs that most proffesionals!

And I think that we all have researched obessively, usually to try and fight our dc's corners. Mummy instinct will see you through and there is mnsn corner when your up to your eyeballs ( we have great cake!)

Thank you thank you everyone.

Yes to hearing test - I don't think it's that but surely good to rule out. The HV seemed satisfied by the fact he'd had the newborn screening and some of my descriptions indicating good hearing. However, the more I think about it, the more I think she should be automatically getting children like these tested. My BIL is an EdPsych (handy) and he sees a lot of children who have got through a surprising number of years without anyone realising they had very poor hearing.

The HV mentioned portage and gave me a leaflet. It seems daft to wait on that one so I'll phone her and ask her if we can go ahead asap.

Following all your advice, experience and stories, I think I'll also ask for referrals for a hearing test and to get an appointment with the consultant she talked about.

I've also been planning to go to the GP to try and refer him for a sight test as his sister is extremely long-sighted. No sign that he is (ie obvious squint) but surely the family history would make it a good idea. Not that I think this has anything to do with his communication issues, but just splurging here! Sigh.

I so appreciate all your advice.

Agree with whats been said. Its amazing how quick you go from is he / isn't he? to old hand on here.

Google MCHAT and score it. I found that useful to know what signs to look for. Of course it is depressing when you start ticking every box but good for going to the GP armed with warning signs.

Don't wait there is too much delay in getting provision as it is.

Welcome Dame Gladys,

my Ds2's receptive language was also very poor at that age (and until about 3.5, if I'm honest, but now he's catching up fast).

Hanen is terrific - turn those fears into action and all that. I'd get More than Words but also It Takes Two to Talk if you have the cash.

Ask what is involved in the hearing test, by the way. DS2 was given an inappopriate test involving requests to follow complex instructinos (he didn't understand) punctuated by loud noises (he was terrified).

Think of it as your first step into assertive mum-dom! Your boy may have quite a lot of appointments in the next couple of years - if any of those involve something he might find distressing,(they lifted my son up on to a mid-air weighing machine - it took me a year to get him back to that doctors'), consider asking for it to be done a different way.

LOL about us all being assertive - my first ever thread on this board does indeed sound assertive but that's because online no-one can see you shaking.....

My advice is: remember you were the expert on this child before - you are even more the expert now, and

• discipline only at the level of his understanding of language, not at the hypothetical level he "should" have, and
• seriously consider getting a camera and taking photos of all common destinations/people in his life and displaying them all over your walls so he has a better chance of knowing what's happening next - kettlechip used to have a folder of photos in her car - his ability to learn from what he sees may well be perfect, iwith the ability to process language being affected.

It's kind of like you're walking along a path with the other mums and you realise your child's stuck in a tunnel - you've no choice but to go back and get him, even if that means walking very slowly .

Hi Dame Gladys, I just wanted to say Hi and welcome. Ds1 is 2.5 with a global delay / suspected ASD. I'm still trying to get to grips with it all and have found MN invaluable for ideas of how to take matters into your own hands.

One thing I wish I'd realised earlier with ds1 is that he needed to build up his attention span in order to be able to learn stuff. I found that getting him to sit at a table, even for a few seconds, and focus on a game like rolling the ball to each other, taking turns, has really helped. He protested a lot at first but now he can sit and focus for up to ten minutes and his receptive language has really improved. It might not be appropriate for your ds but it definitely helped us so I thought I'd mention it... x

I'm still here after a busy weekend!

I've ordered the Hanen book. DH has been taking photos of DS'stuff and general things and printing them out on cards. DH was obviously desperate to DO something so I let him get on with it, not thinking DS would be very interested/motivated. But I was amazed how excited he gets about these cards and how he suddenly started saying words he's never said before when we look at them. So that was nice.

I'm working today so he's gone to nursery with his sister and I had a chat with his key worker. She was nice and they seem keen to work with him in any way they can. He just goes 2 days a week and does enjoy it - has never had any problems per se. But of course they're aware of his level of communication etc.

I'm about to try to phone the HV about the various things I've already mentioned.

Thanks for all your messages - this SN section is definitely the friengliest I've seen and I've been on MN for a good while under different names.

I liked the idea that, metaphorically speaking, we've charged ahead and not noticed that DS was a way behind us. So now I can go back and walk with him at his pace.

friendliest even