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 Now he is withdrawn, more aggressive, looks ill & tired, everything as to be coaxed out of him, only language is labelling.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?

[jabberwocky]

How are you today, sadminster? I know everything just seems impossible sometimes but you are doing a terrific job. saintlydame had a really good point about it being a marathon not a sprint. You have to stop sometimes and remember to take of yourself so that you can do these things and not get run down. Get out by yourself even to take a little walk and think about something, anything else for just a few minutes.

[sadminster]

Up at 4am feeling sick & heartbroken - awful sinking feeling when I remember what is going on.

I think in a safe environment ds is pretty happy ... but he isn't learning anything. I don't know how to help him. My dd1 sat n the bed last night & told be about tiger snakes, Peter the Great & a new soup recipe she's thought up. It was really hard not to cry - ds won't look at me, he can't tell me anything. He is so completely different from what is 'normal' how come I only realising that now, when he's almost 3?

[lingle]

It sounds like the emotions are almost overwhelming sadminster . One thing I'm not quite picking up on is the extent to which you feel this is a change from a month ago versus a delay that was already there a month ago. Do you know yourself? or are you too close? The professionals could pinpoint this for you I hope.....

I've had times in life waking up feeling like a truck just ran over me and thinking "why?"...."oh yes, I remember...".

[cyberseraphim]

I was just thinking too about that advice - someone said to me 2 years ago that 'you feel like you have been hit by a train so it will take time for the world to come back into focus'

"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. "

That does sound good at least written down like that. Certainly a huge amount to build on. What are the professionals main concerns and are they the same as yours ?

[sadminster]

I'm not coping at all. I'm really not. I'm too close to know anything. This has completely destroyed my confidence as a parent.

Main issues are

• language - lack of
• play skills - 'immature' no imaginary play
• auditory issues.

[lingle]

you're overwhelmed .

You won't always be, you know.......

As for DS, I'd settle for "pretty happy" for a few weeks..... learning can come as the family settles again perhaps?....

[cyberseraphim]

I wasn't trying to be Pollyanna and say ' be glad he can blow bubbles' but the range of things he can do for an ASD or suspected ASD child of that age does sound encouraging. Experts will always tend to pick on the negatives and weaknesses so you have to get used to that -and to see past it as much as you can.

There are telephone/counselling helplines run by the NAS

www.nas.org.uk/nas/jsp/polopoly.jsp?d=617

maybe it would help to speak to someone about how you are feeling ?

[morningsun]

sadminster I can't advise you on ds issues with the knowledge of these ladies on the sn board as I don't have their experience

but I do have experience of loss,and when you have had a terrible loss,it is terrifying to think that might happen again and maybe your current emotions are also connected with the loss of your son.
You sound distressed and overwhelmed,please look after yourself,ask for emotional support and maybe trauma counselling.

Whatever issues your ds has,they are not your fault,he has not disappeared forever and he is still your same son,and you don't have to do any more than you are doing.

The panic you are feeling~do you feel he has fundamentally changed in a way that could indicate a health issue,or is it a worsening of how he has always been~try to put it into words so we can help you to think about it.
Take care xx

[morningsun]

sorry~I think I've read all the thread but excuse me if you've said this

Has he had a recent hearing test?
Has he had ear infections?
Is he healthy re weight etc

What did the GP say when you took him to be checked?

[sadminster]

god you're all being so kind.

I took dd2 for her first set of vaccines today (cried a lot (me not her)), sobbed on HV a bit more too. I think I have some 'issues' (hollow laugh) related to all that we've been through recently that are making me less able to cope. I need to start eating & sleeping again. I'm finding it v. difficult to connect with friends - hearing about everything their children are doing is painful sigh. Nothing much else seems t matter to me.

Both grannies & CM have said ds doesn't look well - he hasn't got a temp & obviously can't tell us if he's hurting. Seeing GP again tomorrow (I practically live there) - I'll ask him to check his ears & throat again. We have (another) audiology appointment on 10th August.

I'm muddled ~ if he was talking I wouldn't be so freaked about everything else. He is definitely very different to other children of the same age & has always been. But we (his whole extended family) have always regarded those differences as 'just ds', we love his eccentricity. What is difficult/different now is that everything is on his terms - there's no reciprocity (not that I'd expect much empathy from any 2/3yo) he'll smile/hug/play when it suits him & if it doesn't he'll just walk away & completely blank us. It is so exhausting - I'm scared to miss those moments of eye contact or attention in case he just decides it isn't worth the effort.

I am terrified for dd2 too.

[cyberseraphim]

Your concerns about speech are understandable and anyone who dismisses them is not thinking in practical or realistic terms. It's also very natural to want to back away from friends with children developing typically as it will only intensify your own concerns. Get everything checked physically at the GP/Hearing checks and take it from there - very slowly. When will you know the outcome of the assessment for his language delay?

[morningsun]

yes,try and rest,eat well and open up a bit to friends~sometimes other"perfect"families have been through things too and you can just say "Oh I'm very concerned about ds not talking yet~we're looking into it and it's rather stressful"
try not to think and pre empt what might happen ~for any of the dcs
when you say you have lost confidence as a parent~that is because you are having so many things go wrong.However that is due to circumstances,not you as a parent.

You sound like a brilliant parent,but don't forget if you don't try to calm down and look after yourself you could become exhausted.So take as much help as you can and try to sort out any possible health issues for ds,and be calm and don't expect anything from him for a bit~think of him as being too tired/off colour to communicate.
Also fear is closely related to anger so when you feel cross with him it's really down to fear~a natural feeling.

Give it time,it will get sortedx

[fanjoforthemammaries7850]

sadminster..i really feel for you, my DD is the same age and going through something similar, it is extremely hard. You sound like a wonderful dedicated mother who is doing really well.

[saintlydamemrsturnip]

"I'm finding it v. difficult to connect with friends - hearing about everything their children are doing is painful sigh."

God no, keep away from people with children the same age for a while (well unless they're understanding and you feel some benefit) I used to come home wanting to chew my own arm off. Don;t feel that you 'should' be able to meet them. Do if you want to, don't if you don't want do but don't be guilted into it. Childless friends can be good as they have no idea what children are 'meant' to be doing and are often much better at interacting and easier to talk to!

However, friends in the same situation are worth their weight in gold, even if you just chat to them on the phone a lot. In the early days I 'met' a mum online whose son was the same age/going through the same thing and we chatted a lot on the phone, emailed each other, compared stories and my goodness it was helpful. We have met up in real life and still exchange news every now and then. Do you think your HV could pass your email address onto someone in the same sort of situation as you? Just finding you're not alone is such a help ime.

I do remember feeling the same way about speech as you, and saying the same things, but honestly even if it doesn't happen (which is very unlikely by the way - there's not many of us with non-verbal kids) it won't matter to you so much.

[saintlydamemrsturnip]

[fanjoforthemammaries7850]

good plan, must sign up for CAT.

[saintlydamemrsturnip]

Honestly it's my friends in the same situation who have kept me sane. I have another friend I met online, then I moved by coincidence just around the corner from her. She has a child with a similar level of difficulty to my own and we talk almost every day on the phone, and of course get together sometimes. She's a very very good friend and 'gets it' because she's living it. We often say we keep each other sane.

[fanjoforthemammaries7850]

that must be lovely...all my friends/acquaintances/relatives have NT children..

[izzie123]

One thing that hasn't been mentionned that you may want to talk to your GP about is the possibility that it is linked to epilepsy. Somes types of epileptic syndromes don't necessarily present with what is normally thought of as epileptic seizures and because the brain is constantly having epileptic activity it can lead to the child withdrawing and losing skills. Have you noticed hime staring, or seeming absent/day dreaming for a a few seconds/minutes or going into states of altered awareness? These could be absence or partial seizures. If you think this may be the case, then ask for an EEG.

[sadminster]

thanks izzie, I'll mention it to the GP (for all the good it will do).

DS has had a great couple of days - CM yesterday, at home with us today. We did playdoh, drawing, Lego, bubbles (his favourite things) then he & dd1 played in the paddling pool for ages & then played rough & tumble for an hour. No language at all - he's babbling constantly & lots of shrieking. Had a major strop when I tried to do a puzzle with him this morning. No longer bothered when dh leaves for work - used to signal 20 minutes of sobbing.

I was totally depressed by something I read about shared attention in children with ASD 'just' being another way to use you as an implement. Panic is subsiding though .. kind of grim sadness now. Totally doubting our ability to organise an ABA program too.

My SALT is on holiday for the summer, HV is off sick so I haven't managed to find out what's going on with the NHS referral. God knows how long the paed will take (choose & book).

Poo is just as horrid as always [pretending I wasn't hoping for a miracle]

[TotalChaos]

sorry it continues to be a stressful time and you are still in the dark about referrals/timescales etc.

agree completely with the saintlydame about childless friends - you don't get the "oooh look at darling Johnny's wonderful telephone manner/pretend play" forced upon you, and IME childless friends don't tend to underplay things, as they will trust your judgment and will respect that if you are concerned, you will have good reasons.

[saintlydamemrsturnip]

Oh my that shared attention as an implement thing is rubbish. I carry out research into children diagnosed with severe autism and without wishing to downplay the challenges ( there are many of course for the kids) I see plenty of moments of shared attention for enjoyment and for referencing and for lots of other things the children are not meant to be able to do.

[sadminster]

mrsT thank you for saying that ... I think it was one of the most upsetting things I've read. I really hate the way medicine/science talks about people with autism.

NHS SALT manager called at 6:15 - wants to come & do home visit (her & the original SALT) next week. She sounded v. defensive re our second opinion.

[saintlydamemrsturnip]

It in part arises because so much testing and research is done away from the child's natural environment. So the child is seen at their worst. All the research I do is naturalistic ( it sort of has to be for the most severely affected) and a big theme is unexpected ( in terms of the research literature) competencies. But there's a lot of it! My view of autism at the severe end at least is that many children ( and presumably adults) work very hard to communicate despite their very great challenges.

[sadminster]

We had a terrible night with ds - he flipped out at the drs, went to sleep late then woke every hour pretty much. He whining downstairs now ...mornings are really difficult. He'll refuse to eat anything until mid morning & be in a vile mood the whole time. Don't want dh to go to work It is so difficult to be continually patient & good humoured.

There's a sn nursery here that they can be referred to without a diagnosis, will try & speak to someone about that today. Apparently CDC referral has been sent.

dd1 (nearly 9yo) is starting to react to all the stress too.