Panic! I think DS is in the midst of an autisic regression

[sadminster]

DS is 2.9 being assessed for a severe language delay, has a number of 'autistic traits' but he seems to be getting worse very quickly.

A month ago I have video of him grinning, turning to us and pointing out an aeroplane flying over, dancing, laughing, patting his baby sister (saying 'gentle') & laughing when she burped. Now he is withdrawn, more aggressive, looks ill & tired, everything as to be coaxed out of him, only language is labelling. He suddenly has eczema and horrible stinking loose stools. His concentration is definitely worse.

Anyone got any idea what I should do?

[sadminster]

he's sat under bed doing a puzzle now (silently) while I feed dd2. Watched a video where he ran through all his words (only time he's really animated), some shared attention. Ignoring everything I say.

[saintlydamemrsturnip]

sadminster I really remember being in your situation and really really willing ds1 to talk. In some ways we're not a happy ending because aged 10 ds1 doesn't talk, however he communicates well and is very interactive. And is less challenging and more able in other ways than some children I know with a lot of speech.

I suppose what I'm trying to say is try if you can to forget the speech. The vast majority of children do end up with speech, but if they don't you won't actually care that much anyway. If I was given the opportunity to wave a magic wand and choose one thing to make life easier for ds1 I wouldn't actually give him speech I would cut out his OCD type behaviour - it's far more of a PITA and more disruptive to him than his lack of speech.

If you go for private SALT do make sure the SALT has god experience with children being assessed for ASD. Another option would be to look into doing a Growing Minds course- I mention this because I have heard on the grapevine they are coming to the UK early next year and have heard they may be running a parents beginners course (usually 3 and half/4 days) (It all depends on having enough interested people- they don't need many- our group was small). It may cost the same as 6 weeks SALT and I would recommend it over that because honestly Steven who runs it is so experienced and just sees things so clearly. His wife deals with the kind of 'dealing with it' side of things- I was very dubious about that before going, but honestly I think it was life changing for us. You don't need a diagnosis to do it and it would be worth considering. Perhaps talk to them if you're interested so they know there's another interested party. You don't have to sign up to anything. They're very good at giving you a) things to do (that work) and b) hope! They're trained in different therapies, so fit the therapy to the child rather than the other way round.

Sorry this is like an advertorial. I just recognise myself in your position then and I considered GM at that time, didn't do it, but went for it 4 or 5 years later and then wished I'd been earlier. Thinking about it here's a review I wrote about them a few years ago. We haven't been working with them for a while now (no cash) but their effect still lasts and if they do come next year I am fairly certain I will try and do the top up course.

[saintlydamemrsturnip]

Oh actually thinking about it TRUE who are linked to in that Growing Minds review are fairly near Reading (Woking) and may be really helpful for you.

[lingle]

good morning Sadminster.

I'm very sorry indeed to hear that you lost your child.

I don't know anything about the diet stuff but good luck with it.

"Auditory inattention" sounds like a useful term - maybe not one that you can make use of in the current crisis, but one that tells you which bits of his foundational language need strengthening. It seems to me like you've made a lot of progress - getting beyond the superficial expressive speech problem, looking hard at the understanding problem and finding that you need to work on the attention to auditory stimuli.

Could the family member who challenged you be coopted into taking the daughters on some nice day trips during the hols? Perhaps their intentions are good (or if they are like my mum they at least think they are good) even if they blunder hopelessly in what they say.

It's clear how wound up you are and I wish I could say something to make it better but it doesn't work like that does it?.

[TotalChaos]

saintly - do you think that some of the donna william's website stuff on sensory issues might be useful reading for sadminster re:auditory inattention issues?

I completely agree with making sure that any private SALT is familiar with young kids with ASD type language problems. I've no experience of AIT programmes - I think a few people on here have tried The Listening Program with their kids, with mixed results, some finding it helpful, some finding it positively unhelpful (but that is slightly different from the Johansen one)

[lingle]

hi sad, how are things.

[lagaanisace]

Am feeling very indignant for you on account of your family's reaction!

Just wanted to add my support at such a difficult time...

[sadminster]

Thank you all so much - I feel like I'm completely monoplolising the forum but it is really helping.

It's mixed - he's doing fine with GFCF (better than I am ) nappies definitely less vile, skin so-so, sleeping really well no bedtime tantrums but he could really do with a nap in the afternoon, by 2ish he looks like death.

My mum, who hasn't seen him for a while came around today. She said he's like a different boy - good eye contact, very smiley & engaged, bringing books & toys over to show, lots of pointing (although most of the time he's only looking at the object not us), babbling more as he plays, lots of joint attention when we look at books (only if he initiates it) or watch a video. He pointed at a crab & said crab today (very odd) & is responding to 'look!' and 'no!'. Waved 'bye-bye' spontaneously a few times in the last couple of days & noticed the postman at the door.

Still completely ignoring his name & all instructions ... gets very angry if I try forced choices or 'show me'. Lots of wrapping himself in blankets & squeezing into tiny spaces - gets upset & covers his eyes if anyone sings. Lots & lots of silent time - especially when he's tired. Weather isn't helping - he's much better when we get out. Definitely not so interactive with dd1

I don't know - I think I'm too close to judge. We're going to BIBIC at the end of August, hopefully they will give us some ideas about the auditory stuff & SALT.

We don't have TV, but ds recently has started watching a couple of Baby Einsteins. He is extremely animated & vocal when they are on - pointing, talking, sharing with us - which fits with his visual learning (the other times he's animated is when we're drawing together - a couple of hours a day or if he has a book he loves). I've been sitting with him while he watches them - it's fun - but then feeling v. guilty because I should be doing something more 'therapeutic'.

Looking forward to the weekend & having other adults around.

mrst - I found your blog really useful, thank you. We're definitely interested in ABA - I'll start a thread about Growing Minds

[lingle]

It must be pretty hard to "follow his lead" when you've got a folder and lots of mumsnet threads bursting with ideas of what he "could" and "should" do......

I guess you have to be really careful at the moment not to interact for the purposes of "testing/checking" ....

[sadminster]

"I guess you have to be really careful at the moment not to interact for the purposes of "testing/checking" ...."

Yup SALT told be to play with him because 'you enjoy it' ... which is great but still scared of doing the wring thing/missing the vital step

He started doing a brilliant all done gesture yesterday - very cute!

[jabberwocky]

sadminster, the blanket, small places and getting upset with singing is consistent with sensory overload. I know we have recommended lots of references to you and you may be overwhelmed but if you get a chance, the Out of Sync Child is very good for learning more about sensory issues.Right now just having a designated place that he can go to when he is overwhelmed may be the thing to do while you are still getting sorted with all of these new things we have been suggesting. The good news is that starting at such a young age he can be desensitized. ds1 was much the same as far as being easily overwhelmed when he was the same age. now at 5.11 he is MUCH better. An easy thing to do to help with sensory prob's is brushing. You take a little rectangular plastic surgery/baby brush and stroke rather firmly up and down the arms and legs. FWIW I never did the oral swipe step mentioned in the link but we did do joint compressions.

ABA can work wonders with some kids. Others respond better to floortime therapy.

You are doing great, btw!!! You have taken on so much in such a short amount of time and it sounds like you are already getting a positive response. Hang in there

[saintlydamemrsturnip]

Agree with jabberwocky about sensory overload etc. Growing Minds will actually help with Floortime as well. (They were orginally Son Rise therapists). We've used a mix of ABA/Floortime at different times. The Floortime repository (think there's a link on my blog- let me know if you can't find it) is a great place to find videos of floortime (or you tube!)

If he enjoys watching the videos that's fine. You can even 'do' Floortime when he's watching videos (by getting in the way- I do it with ds1) . But I wouldn't worry too much about that. Just comment on what he's watching.

He sounds as if he is doing really well tbh.

[lingle]

"play with him because 'you enjoy it' "

exactly. I'm a "floortime" gal myself and guru Greenspan (the guy behind floortime) says what a child needs is spontaneous joyful interaction with their parents - "rote" interaction doesn't do it. His key (lovely) word for what you do with your child is "woo" them.

Basically, if it's spontaneous and genuinely connected to both your emotions, it's good. If it's rote or testing or bombarding with questions, it's bad.

Stick in some awareness of his auditory inattention and visual strengths, stir well, then have a relaxing cup of tea and only smile at him if it's a real smile going all the way to your eyes.....

[sadminster]

I got a Greenspan book today - I need to stop buying books though I'm not talking anything in anymore.

Am going to start new thread about ABA stuff ... more I read more I'm confused.

[TotalChaos]

you've done loads this week. give yourself a break from the reading/info gathering, you sound overloaded.

btw DS was the same with dvds, chattering along to the visuals.

[saintlydamemrsturnip]

The problem is it can be impossible to just play enjoyably with a child if they won't engage with you. I agree with tc. Take a bit of a break and just follow him commenting on what he does. It's a marathon not a sprint so don't be too hard on yourself.

[lingle]

point taken.

[sadminster]

I'm trying to think of what we play - blowing/popping bubbles, blowing out candle, drawing, playdoh, puzzles, cars/animal/trains (involves crashing them, posting them etc), building stuff (lego/bricks) looking at books, tickle games, catch, peekaboo, chucking soft toys around , bouncing, videos. All bloody day.

I am desperate for the portage people to come & give me some ideas.

[saintlydamemrsturnip]

god that's brilliant! Ds1 wouldn't do any if that stuff! Honestly just carry on you're doing fine - that's a really good starting point.

[saintlydamemrsturnip]

Oh if he likes posting the one thing ds1 did like aged 2 was posting cards - we bought some photo cards then as be posted them I just said the name of the object on the card. He does have a very good receptive vocab for nouns and I think that came from that game.

[sadminster]

I like that idea MsrT!

It sounds like a lot but he doesn't change the games - quite happy for me to play differently then that becomes The Way To Play ... but nothing comes from him.

So tired,he was up at 6am crying & wanting bubbles. dd2 had an awful night.

[sadminster]

he ignores everything we say.

[saintlydamemrsturnip]

Floortime is very good for extending games. One of their basic staples is called playful obstruction - you follow what the child is doing then get in the way ( but playfully). Eg they're watching the tv you playfully stand behind them then slowly but with lots of warning bring your hands in front of their eyes. Ds1 responded really well to this - it also helps teach dealing with frustrations without flying off the handle and I noticed that things taught using this method ( such as finding the on off switch to a video recorder 'in oh is this button oh no in oh how about this one' ) were retained far quicker than anything else I've used with him - I suspect because be was fully engaged ( whereas he spends his whole time avoiding engagement as much as he can fet away with when we're doing something directive doing the bare minimum for the interaction to progress).

[sadminster]

Have had the most unbelievably awful day. I can't manage him into the car seat any more & am covered in bruises from being kicked. How the hell am I supposed to do this for the next god knows how many years.

Noticed today that he is covering his eyes (as he does with singing) when he sees pictures of people's faces but not pictures of objects. This is all new - a month ago he was totally different.

[saintlydamemrsturnip]

You will manage honestly and things like the car seat will get sorted. How many good friends do you have at the moment? Someone you can let it all out to makes such a difference.

Stuff like enjoying bubbles is majorly good stuff so try not to lose sight of that amongst all the other challenges.

Xxx