here we go again (?)

[phlebas]

ds2 is one next week & I'm fairly (absolutely) sure he is losing skills. He doesn't respond to his name any more, he doesn't wave any more, he is refusing solids - a month ago he would enthusiastically eat anything, whip around at the sound of his voice & respond to & initiate waving appropriately. Motor development is fine, babbles away but no words or signs, hearing is fine (had that tested you can self refer here), he dos imitate to some degree but hasn't learnt to clap yet, he's healthy. He is so much like ds1 - happy, friendly, loves music - who is 5.5yo & has ASD.

I can't imagine anyone being willing to assess him at this age & even if they did I'm aware that there won't be any services (we might be offered portage when he's older but they quickly dumped us when I demonstrated that I was reasonably skilled at playing). Is there any point in approaching GP just so our concerns are in his record (we do not have a good relationship with our GP)?

I've emailed ds1's ABA consultant to ask if he or anyone else he works with very young children who are at risk or showing subtle signs of developmental disorders. I need some guidance.

Bollocks.

Oh Phlebas!

Don't know what to say really other than if you're right he is lucky to have been born to you.

Star is right - your ds is lucky to have such a proactive mum.

Phlebas...

I didn't want to read and run.

My Ds has ASD&ADHD. After being through the system you, as all the parents know its strengths and weaknesses.

Your Ds is lucky to have you, most people wouldn't comprehend what they were witnessing. I cant see why ABA wouldn't be able to be adapted, emailing the ABA consultant is a start, maybe he knows of someone who can offer more information.

You've nothing to lose by contacting the G.P/H.V but as you appreciate already they are only means to getting into the system not helping your Ds.

I really wish i had some useful info to offer...

Take care.

Something very similar happened to dd age twelve months.She lost everything, couldn't wave , clap, smile or say the words she had in fact was silent. Gp referred her to ds's paed at 13 months, once chromosome checks came back clear she was referred for MDA at 17 months. She got a moderate to sever autism diagnosis a week after her second birthday (would have been the month before if paed hadn't been on holiday) I started early intervention at 17 months using what I knew from having ds. Now at 9 she's just brilliant, the intervention paid off in spades.
See your GP and demand a referral to a paed would be my advice.

I'd imagine, given your history, that they would willingly refer, tbh. Push, push, push.

right will go to GP for referral - they are down to 1 paed from 3 so waiting times are unbelievable. The change in him is really clear - other people have noticed too - ds1 lost skills somewhere between 15 & 18 months.

oh, I am sorry to hear this,, phlebas.

I hope you get results form the gp/referral - agree with others that with family history, you should get taken seriously, and less 'wait and see'/languishing on lists.

ABA cons (still same one?) should have some ideas. I know when dd2 was small, he was full of ideas as to how to get her going/test out certain areas. dd2 has been involved in dd1's ABA since she was about 14 months old... not really the same as a targetted programme for her, but we did (and do) have some concerns which have been/are being addressed, so it is certainly possible to 'work' with a child so young.

Do keep making noises at all the right people. 18 months is when toddlers can be screened for ASD, so insist on a referral at his 18 month check up. If your HV is any good, they can do that for you.

have GP appointment on Tuesday, we haven't heard from consultant yet but will try phoning him on Monday. Been working on waving all week, he's waving again. No improvement at all on responding to his name (which was ds1's first red flag) - we were all delighted when he started doing it (6/7 months) & I'm beside myself that he isn't any more.

It is his first birthday tomorrow - dh & I have both had lots of tears today. Something isn't right any more & it is agony to watch, we're terrified :(

Oh I am so sorry, and hope of course that this is just a temporary blip and your fears are unfounded...

But if it turns out to be the case, you can absolutely start doing ABA with a child this young (one of my tutors worked with a 15-month old at one point) even on a very simplified scale. Doing it already with ds1 you'll know the drill (reinforcement of desired behaviour etc). You will be able to turn around so much behaviour (or even stop it in its tracks) working at such a young age.

Life is fucking unfair sometimes, and it sucks that some people get dealt rotten cards more than once. But, and I hope this isn't a really crass thing to say, but please try to think positively. as recognising the signs so early and acting on this is the best thing you could have done.

I hope you can all enjoy his birthday tomorrow, happy birthday to him

I agree with lougle, gp will probably refer you, we got referred and dx push through pretty quick with dd2 as we already had a dx for dd1.

I know its hard (have been there), we were devistated when out gp sugested that dd2 may be on the spectrum too, although you know what to expect going through a dx it doesn't make it any easier.

You are doing all the right things and your ds is lucky that most things he needs will already be in place for his brother and he has a mum who can help and support him.

Talk to your gp and HV, i'm sure they will take notice.

Don't mention asd. Don't. It's not considered urgent. Talk about the skill loss, it can also mean scary metabolic or neurological things so you'll get seen faster.

Pathway variability

You know the hanan and early bird stuff already and are getting ideas re ABA. Even with surveillance and diagnosis the NHS will have sod-all to offer initially as you know. Im wondering, are you anywhere where you can get charity intervention? Music therapy and/or OT style stuff comes to mind.

thanks for that link maria - have flicked through - will read it more carefully when I'm a bit calmer :/ I am going to stress loss of skills rather than OMG I think he has autism because on past experience GP laugh me out of the room if I say that :(

we're assuming there is a problem - dh keeps saying that he's v. young if we start working with him now then he won't have had time to become as delayed as ds1 was, he won't have developed so many barriers to learning or as many maladaptive behaviours/anxieties/phobias. There is the issue of ever diminishing physical/financial/emotional resources though - ds1 is having nothing (apart from me atm) as we have no money. Hoping to start weekly OT with him in September. I am so overwhelmed by this that I'm not thinking clearly.

thanks Leonie, from that website at 12 months:

Use a few gestures, one after another, to get needs met, like giving, showing, reaching, waving, and pointing? - not pointing, wave is often to get attention rather than in response
Play peek-a-boo, patty cake, or other social games? - yes
Make sounds, like ?ma,? ?ba,? ?na,? ?da,? and ?ga?? - yes
Turn to the person speaking when his/her name is called? - not any more.

Now we're doing that hypervigilance thing - does he look okay today? Is he unhappy? Did he smile more yesterday? etc etc exhausting. dd2 woke his up earlier then he wanted & he's grumpy now - course that means I'm freaking.

There's another reason to get him checked as well as asd etc.

If he had a grumbling infection or glue ear or something, he could be miserable and distracted and not able to use his skills. Even mild hay fever can block them up a bit so they sleep badly and act weird.

Ds1's ASD looks much more severe when he's full of pollen (tho oddly much less when he's properly full of bacteria )

GP was predictably useless - he was fine at HV 12 months developmental review (yup the one where a nursery nurse wanted to know if we had a carseat & stair gates), wants to wait until 18 month review FFS. I told him I want M-CHAT done at 15 months (my dds passed at that age). Going to discuss with another GP.

Our ABA consultant does work with babies (usually siblings of affected children - "normal" parents don't pick up the subtle signs we do & even if they do people don't listen). He's coming up in a couple of weeks to do a morning with ds1 & an assessment with ds2.

I'm feeling happier generally - we have a plan, ds2 is still gaining skills (stair climbing etc) & is waving /responding to name - but not as solidly as I would like. I still think something is going on.

oh phlebas - how frustrating. would try another GP - we had a similar situation with DD and I irrc it was the third GP in our practice who finally took me seriously enough to refer me (for my own piece of mind, so he said but at least we had the referral).

I guess it's no surprise that GP would say wait and see. They're really no experts in ASD - doubt they could recognise the signs in many 5/6/7yos let alone 1yo.

But, as you say, at least you can do something yourselves - which tbh is better than anything else anyway (even when you do get into the 'system' there'll be a long old wait to see someone. Then a longer wait to get a dx (if you get one). Then given, erm, fuck all in the way of concrete help to do anything.) In the meantime go back in a few months if the concerns are still there.

I know it's an utterly bittersweet consolation but at least you are way, way, way better placed to make a difference this time.

If money is a problem, is there any way whoever looks after ds2 (whether you/childminder/nanny) do any tutoring yourself with guidance and supervision from your consultant/supervisor?

Whereabouts are you?