Struggling with coming to terms with just how autistic DS3 is...and tired of putting a brave face and a positive spin on it all the time

[SixSpotBurnet]

Yes, DS3 (just turned 4, ASD) has made progress - definitely.

But a nasty virus at the end of last term has really knocked him back - a lot - and we are really having to face up to just how autistic he is.

He has virtually no communicative speech or language. He was using PECS a bit but that seems to have gone into reverse since the virus. He was eating a reasonable amount of food, including some (heavily disguised) green vegetables and meat - now we're back to sodding marmite ricecakes. He has finally (as of last week) given up drinking milk from a bottle, but is now drinking very little indeed, of anything.

He does use the potty for wees but still has lots of accidents and we are as far away as ever from getting him to sit on the potty or toilet.

He has started to get terribly upset about things like the washing machine, which never used to bother him, and screams ear-piercingly if he can hear them, and even more ear-piercingly when they stop.

He picks at his face constantly and it is coveroed in large bloody welts that never get the chance to heal.

Despite lots of brushing, swinging etc as recommended by OT, he is getting worse, not better, about things like having his nails cut.

I know there was a risk that he would be somewhere on the spectrum but I never, I'm afraid, in my wildest nightmares thought he would be this autistic. It all just seems like such a mountain to climb and I'm not sure I'm equal to it.

Sorry to whinge.

It gets better. In the early years its hard because you don't know where they are or where you're headed, but once you get that sorted it's less of a roller coaster.

The correct school placement is essential.

And being around other families with children as affected as your own is essential or you'll end up wanting to slash your wrists.

I'd really recommend reading Lucy Blackman's book (published by Jessica Kingsley) I read it when ds1 was 5 and it was mind blowing. It really helped me understand why he behaves the way he does and also has given me an understanding of what learning disabilities actually are. It is my desert island book and one I read fairly regularly because as he changes I need fresh insights into why ds1 behaves the way he does.

If he remains non-verbal as he grows (and he sounds to me as if he may well not as he has some speech already) do look into the typing thing. I met someone recently whose non-verbal brother in his 40's ghas started typing.

Remember underneath it he's just a little boy trying to make sense of a very very confusing world - and whose sensory processing is not working properly at all.

Physically severe autism gets harder as they grow ime, but mentally it gets more even and a little easier.

I'm so sorry you're feeling like this - and you're not whinging! It happened to us at about the same time - when DS2 was 3.5 or so - I suddenly realised that I could no longer describe DS2 as mildly autistic just because he doesn't have behaviour difficulties. His language problems alone put him in the severe category.

I do think some of the recent behaviours could be because of the virus though. DS2 always regresses temporarily when he's ill, and I'm sure I read a thread on here a while back where lots of people said their autistic DCs did the same thing. His immune/nervous system has probably been knocked out of kilter with a consequent negative effect on his sensory system. Not that I'm belittling how you feel btw - I know how the 'mountain' feels.

Or the medications.Ds1 is barking after all the colours and sweetners in calpol....

SSB, sorry to hear you are having an emtionally tricky phase. I too remember this realisation when DS was about the same age. I could never "blame" any regressions or just lack of progress on illness or medication as he was almost never ill and wouldn't take any medication but he still had the classic peaks and troughs, two steps forward and one step back. I think it is quite typical and you think they are stuck or going backwards forever but they aren't. I can't honestly say it gets easier but you do adjust, accept and manage. As long as you feel you are doing the best you can you can't ask any more of yourself. Jimjams is right about school placement, where are you with that? Any progress?

Do you have an ABA program going? This is one excellent way to try to move things forward, and if anything at all works, ABA should. A school placement is important, and if it is an ABA school, it would be best.

The nice thing about having a home program is that it gives you something to work on all the time as well. If you don't have a home programme then I would still try and work on imitation day after day. It makes such a difference to everything (behaviour, socialisation, chance of developing speech etc). I know I bang on about it but I see it as the key skill really, and the key to accessing the world at all.

You're not whinging. It is hard. Now I know that no two children are the same, but your post made me think of ds1, who at that age had no expressive or receptive language, who screeched ALL the damn time! Who bit, kicked, slapped, headbutted...who screamed the bloody house down if the hoover went on, had to have plastic plates and cups because he would smash anything smashable, was still in nappies....

Sound familiar?

Well, he is now 9, and he talks - ok, it is 'weird' but he communicates well! meltdowns are few and far between, he is fully toilet trained (came out of nappies at six years old) he is so calm (most of the time!) and friendly and loving. He is a different child! Ok, there are still lots of things as I'm sure you can imagine, but compared to how he used to be, wow - it's brilliant!

But when he was your child's age, I felt there would be no end to it all. I asked his home visiting teacher what the future night hold for him, based on her experience (unfair of me, I know). She didn't want to (obviously) but when pressed did tell me to prepare myself for the fact that he would probably never be able to do anything for himself, would never talk, or live an independent life, that he would most likely be in residential care for his whole life. We thought he'd NEVER come out of nappies for one thing!

Well. Last week he went to the shop without an adult for the very first time. (he went with his 10yr old cousin). I was KACKING myself!! but he was fine.

The point is that it seems like what you see now is what it will be like forever, but you never never know. They can surprise you!

My boys have both had (and continue to have) huge amounts of support, home visiting teachers, me bugging the very life out of them on daily basis , very structured programmes for them...it may not seem like it, but in the long term it makes a massive difference. One day you look at them and it hits you just how different they are, how much they've progressed.

Never give up. I know every child is different but there can be hope.

xxxxxxx

I don't have any advice at all but wanted to give you a great big hug (shhhhh, don't tell anyone, you will ruin my image)

xx

Aw thanks everyone (and lol at OO not wanting to ruin her reputation, Salford 'ard case or wot!).

School placement is next term's big thing. Am asking Learning Trust to review his statement as he needs more hours with autism specialist teacher.

Will post more later, and if anyone sees Silverfrog, could they ask her to email me on [email protected] ? I want to find out more about her dd's VB programme. Thanks!

My sympathies. Life is very tough with an ASD child - everyone on here will agree with that so don't feel bad for airing how you feel. Sometimes it's easier to take each day/week by itself - in fact, sometimes it's the only way to get through a difficult patch. Perhaps your ds is going through a phase right now and will start to pick up again when he starts school in Sept.

SSB, I've just seen this - sorryyou're hving a hard time of it.

I'll email you later on - have to do dinner for starving hunter-gatherer dh...

Hi SSB [big hug]

Hi SSB (is that a type of moth?) Sorry to hear you are having such a hard time. Snap with washing machines and DD isn't even ASD (we don't think). DD is usually not fussy about food but is always worst when she has been ill. I think it's to do with how much they can cope with. I hope things pick up with school. Anyway, from me too!

Thank you all - I feel better now. We had a good day yesterday - after a bout of screaming at the toilet early on, he was in pretty good form all day after that, used the potty successfully for wees all day, played nicely, interacted quite a bit with his brothers etc. And he didn't pick his scabs all day ( and they were still intact this morning). It all cheered me up a lot.

Plus DS1 survived a dental appointment to remove two baby teeth that failed to come out by themselves, so that has been a huge relief to everyone as we were all dreading that. We found a very good dental service in Tower Hamlets that specialises in treating nervous patients including those with SN. Might be useful to someone else...

Here is an email I just received from DH, who has been combining playing "Escape from Colditz" with DS1 and DS2 with looking after DS3:

"DS3 wanted to play too, but was persuaded to have a side game with the PoW pieces who were not participating in the main game. He did some good counting with them. Not sure if any escaped."

Hi SSB. I was sorry to read your first message, but happy to read the more recent ones - and so well done on ds1 and the baby teeth! Brave boy!!

(I've just had the morning of misery with dd and the dentist - complete mule-like x-ray refusal - I'm in shock. Lovely dentist has however given me pretend mouth-x-ray things for her to practise biting on for the next 6 months ...)

Sweetie, I am so sorry: I have only just seen this thread.

I hope today is the start of an up trend.

Another good day today, although there was a very over the top bout of screaming at the loo and I had to carry him away bodily in the end as he was beside himself.

But he has been drinking watered down juice and even ate some rice pasta for tea so things are definitely looking up. And we had a lovely time doing a puzzle and counting this afternoon. And we have a mutual adoration of the Fleet Foxes, which is a nice discovery (and he and DS2 have a mutual adoration of Green Gummibear which is not so classy).

Bink - it's always grim isn't it when it's your nt dc who suddenly goes postal on you? Makes me feel really unsighted when DS2 does this sort of thing. I'm sure she will be okay next time around though. DS1 had to have several attempts even to have the x-rays, eventually succeeded in the dark and spooky confines of the Royal London's basement x-ray department, as featured in Radon Daughters, don't know if you've read it? (It's not that good, but I do remember the bits about the x-ray room veyr vividly.)

Glad things are looking up a little.

we are struggling here at the moment - dd1 is havign reall issues with dh - won't go to him/with him, screams if we even suggest it, won't let him read stories, etc. She won't even let him talk to me (or me to him). It is wearing.

Oh silverfrog, that sounds tough. Hope it's just a short-lived phase.

What happens if she just finds herself alone with DH - without you having said anything, iyswim? DS3 can be funny with DH if he sees me going out, but if we don't actually draw attention to the fact that I am going, he's usually absolutely fine with DH.

oh, hopefuly it will be short lived, but I have my doubts. She gets like this whenever she is havign a developmental wobble, and we've been doing loads of stuff with her recently. We have another VB appointment for next friday, so her consultant might have some ideas

she warmed to dh well on Saturday afternoon, and they had a good 30 minutes fun and laughter, which was good.

she is ok with dh if I go out (well, she may not like it initially, but settles well and they have fun). It is more the sharing of me when we are all together, iyswim.

And since dh works stupid hours in the week, I am loathe to split up all the time at weekends - would be nice to see him in daylight sometimes

Hi SSB!! Have been thinking about you and DS3 this afternoon and that you said about being on the SN threads. I'm not stalking you, honest, just wanted to send you big big hugs for the tough times and big for the better times as I can't really begin to understand what you cope with just hope you and your family get all the support you need. You seem to be doing pretty well to me though and if all else fails there's always that big glass of wine at the end of the day!

It's good to hear that things are looking up a bit, SSB. Fingers crossed for you that it keeps getting better. xx

LOL at Mr SSB's e-mail about your ds3.

Thanks citronella and coppertop .

Silverfrog, hope your consultant can make some clever suggestions!

DS3 often screams when DH talks to me, and has started doing it when DS2 talks to me - maybe in his case it is also something to do with not wanting to share me with others - who knows? He used to get very upset if DS1 or DS2 hugged me (not that DS1 does it very often, but DS2 is a very huggy boy) - maybe screaming when someone else is talking to me is a different manifestation of a similar thing? Who knows?