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Autism in 2.5 years old- is there any hope?(13 Posts)
I'm writing this out of despair as I sit here with DS2 after him keeping us awake since 2am.Last week we attented the initial appointment with him where autism was mentioned,paediatrician is not due till February but I suspect the diagnosis is just a formality.
Over the last few months I watched my beautiful son disappear.It's like living with somebody with dementia.The regression that took place is shocking.My child is no longer with me.Gone is babbling,smiles,first couple of words.Now we are left with blank stares,screaming,crying,kicking and physically present but mentally checked out child.There's no communication coming from him at all.
Our life is hell.DS1 started crying recently covering his ears as he can't take any more of his brother crying (his own words)and asked me if we could swap DS2 for another boy.He's becoming more and more withdrawn.
I'm at loss what to do and if there's anything that I actually do to improve the situation. Does it get any easier? I'm losing the will to live because I'm so mentally and physically exhausted.
If your child is autistic then there is no hope that he won't be. There is every hope that he will sleep better, his brother and parents will learn to love who is not who they wanted him to be, and obviously that he will sleep and interact better.
I'm sorry you are finding it so hard. Being sleepless can make things seem very bleak. My own opinion is that all behaviour is communication, so if your DS is crying a lot of the time he is probably finding things very hard too. Be kind to yourselves and treat this as the huge change for all of you that it is.
DS is 11 now, the middle child of 5 and a joy.
Your DS2 sounds very stressed. You all do. What calms him? Does he calm when he sees running water? What about cars? Play dough? Tubs of rice to run his fingers through? Something to shake and listen to? A soft blanket to lie under? A tight hug?
There will be something that calms him. Find it. For DD1, water, tight hugs and being rocked while singing 'rock a bye baby' were all hugely calming.
You will get through this. I promise that he is communicating. You just have to learn a new code. At the moment, all his cries seem the same, much like a newborn baby. But soon you'll start to work out the triggers and become good at differentiating what caused the latest set of tears.
Try not to overlook the very basic 'newborn' needs, also. If he's suddenly crying, consider too hot/child; thirsty/hungry; clothing too tight somewhere; clothing wet; pants soiled - when they can't tell you what's wrong those things are really frustrating.
The best thing we did was start ABA when my autistic son was age 3: not a 'cure' but just a very good teaching method for the skills he needs to learn (or relearn). Good luck
Try this website
I could have written your message 5 years ago. DS was diagnosed just before he was 3, and 2-4 years old were the toughest times for us - stress of diagnosis, lack of sleep, worry about the future, and a tough daily life (DS was non verbal and we found it really hard to understand what he wanted - many similar behaviours to those you describe).
Like sickof above, we started ABA when DS was 3, and it has really changed all of our lives. It has been a long slog and DS still needs full time 1:1 in school, but he is honestly a joy to be around now (something I could not have said when he was 2!). We have a relatively normal family life, we go out without having to worry about him running off, we can eat in a restaurant, he plays with his twin sister, he is in a mainstream school and has lots of friends. We are also starting to appreciate some of the qualities he has that go beyond most NT kids (or adults!) - a photographic memory for example...
So yes, there is hope. We still don't really know what secondary school will bring, whether DS will be able to work/live independently... but for the moment, we're marvelling in all the things he can do - new words he has learned, improvements in his reading, riding a bike, learning to swim.
I hope that helps a little.
Just re read your op and if you haven't been to see your GP already, I would suggest doing so - DH and I both took antidepressants for a while at around that time. Low dose, for a few months - but they really helped! If only so I was able to focus on getting DS the help/support he needed without bursting into tears in front of each person I saw
My son is now 4. Yes it does get better. It's a bumpy road, and will still be very bumpy for many months and years. I would try ABA, personally I think the kind that is responsive to your child and fits around him, rather than too rigid. Take advice, even this, with care, don't be afraid of getting the help you need or of saying it is tough. Just crisis manage for the moment and be good to yourselves until you get your head above water. Take it in turns to cope with the sleeping for example. You are not alone.
Have you read any books on sensory overload? It may be some cause of his distress alongside trying to communicate.
What's he like with pictures? There's a communication system called PECS (picture exchange communication) which can work for non verbal or language disordered children. You could start with using a picture of a cup and showing it to him with a drink. The idea is he starts to recognise what the picture represents and then you teach him to give you the picture when he wants a drink. So he can communicate.
If he can recognise and likes pictures could you have a daily routine up for him to see what's coming next?
With regards sleeping there are many things you could try. White noise in background, heavier quilt, lighter quite, lava lamp or other lighting.
I'd try one thing for a few weeks and see if it helps before trying something.
Unfortunately there's a lot of trial and error (OT/salt etc can give you professional advice and ideas) but you do find what works for you.
Thank you very much for all your messages.Gives me hope our life is not always going to be as hard as it is now.
Picture communication was mentioned during initial meeting with speech therapist.I also got some tips from them that came by post-gave them a glance but couldn't read them properly yet.
I'm still trying to get my head round it and what it means for our future.I will try my best to help him/ get him help but also have to consider his older brother who is massively stressed out by the situation and possibly feeling sidelined by his wee brother's needs expressed by loud screaming.
Thank you very much everybody
Have you looked into PANDAS? Just wondered as you mentioned the sudden regression. Did it follow some sort of illness or infection?
My son is 16 and severely autistic, he regressed too. It's heartbreaking to watch.
Big hugs. My dd is nearly four and her and her six year old sister have asd. I found the years up to five and a half really awful. My youngest is very hard as she's non verbal. Her sister at the same age was hell on wheels. Screaming, hitting, wouldn't wear clothes, wouldn't walk. Highly unpredictable. We saw a lot of regression in my youngest after a bad case of chicken pox and she was later diagnosed with coeliac. It's really hard I won't lie. I'm angry or sad or filled with grief but my six year old has come so so far so I hope her sister will do the same. My six year old now speaks perfectly, has lots of friends, is in mainstream although has ft 1:1 (both her LSAs adore her). She has made progress I never thought possible and in many ways is easier than nt kids her age. She still has her struggles but is a lot easier. Hang in there. My youngest spent most of today screaming and can't be calmed and has to be left alone. It's soul destroying and I have very little soul and often say by the time she's at school I'll need a padded room.
No ABA for us, but my son is a joy now at 10. We persevered with eating out, holidays etc. and now we can take him out to most places with no problem. He still requires one to one in school, and is very behind academically, but life is relatively easy, compared to a few years back.
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