Finding it hard to be hopeful...ASD DS aged 2

[monkey2010]

Please help me find a bit of hope.My 2 year old has lots of ASD traits, no diagnosis yet. I am finding him so difficult to be with. He is constantly frustrated, trying to dangerous things, on the move and unable to play. I really struggle at the weekend to know what to do with him. He gets bored & frustrated at home, wont tolerate going to a cafe, just wanders round the park / soft play or plays with doors. At times I don't know how Iam going to cope as he gets older. Will he become even harder to manage?

Has anyone's children been similar at this age? What helped you cope?

I work part-time and he goes to nursery and I'm often dying to go to a work on a monday. Life feels awful and I need hope that it will get better.

Our ds2 is now 4.5 and is hf asd. At aged 2 he was a nightmare. He had delayed speech and was frustrated as he couldnt express himself and usually ignored us and our instructions. He was dangerous and we literally could not leave him unattended. It put a huge strain on our marriage as most weekends we were stuck in watching him and trying to stop him hurt himself. They were very dark days indeed aind i was desperate. I didnt go to the drs for tablets but looking back i should have done. But now life is different. He is still hard work and some days i shout too much but he has improved loads. Asd is a developmental delay and im sure your ds will make progress at his.own pace. We still know our limitations with ds and there are things we cant do but there is so much more we can do now. But it is very hard. Do you know any other families by you who are going through similar?

Are you able to communicate with him. If you are not already using MAKATON signs and symbols with him I would go to your local children's centre and try to get on a course. In the meantime use lots of visual stuff like photos and pictures to help him communicate. This might help with the frustration.

Use stair gates to make your home safe for him. Does he like playdough/sand /waterplay! Lots of children do, I know sand and water are not ideal in the house but if he engages with it you might get a bit of breathing space.

2 is a really difficult age with and without SN's, try to be kind to yourself .

It may not help at all but I really liked 'More than Words' which is a Hanen SALT book for DC with ASD. Nothing in it would harm a child who doesn't have ASD! www.winslow-cat.com/more-than-words.html Not cheap but I felt like I was actually doing something rather than being helpless.

My DS took to PECS really well at 3 yo. If you haven't heard of it, it's a picture exchange system of communication where you can ease some of the frustration by giving your DS some control back in his life by giving him choices. eg, What juice does he want, apple or orange? Food and drink were the first examples as they were very motivating.

Others on here have knowledge of ABA which you might want put in a search.

What help are you getting? Portage or help for your DS at nursery? SALT?

Hi, I don't have much to add to the above posts but wanted to let you know that I too have been there! Even though he is a very passive child, i found ds1 to be sooo energy-sapping at that age. I was wearing myself out to try to get and maintain his attention or to find out why he was screaming as he too had no communication at all. PECs made a big difference to us, and later makaton, and now he's on the cusp of being verbal thanks to ABA (age 4). Make sure you are on all the lists for referrals (ASD assessment, SALT but also occupational therapy if he lacks play skills/may have sensory difficulties). Are nursery being helpful? Its not too early to start statementing process and its good to start now as it takes ages. I applied when he was 2.9yrs and have just started getting support paid for now! Agree about more than words, and also there is a book by Julia Moor about playing, laughing, learning with child on autistic spectrum, it has lots of practical ideas. hth

Thanks for your replies. He has got some words and can communicate his needs well (usually by screaming). He is having SALT and will have Portage soon.

For things he likes, it's hard because he is always on the go so will never play with things for more than a few minutes. Likes to be read books, loves numbers but mostly doesn't like toys...doors, keys more enjoyable to him.

Dietstart -yes, putting a huge strain on our marriage for the same reason. Having to do shifts at the weekend and makes both of us so emotionally & physically tired.What helped your relationship?

Hello - my DD is still 2 and recently diagnosed with ASD and has been very difficult to live with, very difficult to take anywhere. So I have often felt 'please tell me this will get better, it's awful'. I've often felt really desperate.
BUT I wanted to post just to say that as her language has recently started to improve - she's finally started to realise that communication might be worth doing, things ARE gradually improving - they are better than they were 6 months ago. So even looking at it short term, things will improve.
Certainly for us, having her start to respond to questions (even just 'more?' and getting a yes or no, for example) has made a huge difference. Sorry, I don't have other MNs longer experience, and life is still a challenge, but I wanted to let you know that already life is improving as she gradually progresses and understands more, communicates more. I really hope you find this too.

Hmmm...ds delayed in walking (18 months) so trampoline is one for the future....!

Monkey - sorry our posts crossed over, so hadn't seen your reply about communication. My DD also used to scream about everything - but since she's talked more, we've gradually had much less screaming. Screaming is very draining.

My DD also loves books and numbers, but didn't play with toys until Portage came 8 months ago and have gradually taught her how to play. It's taken a while, but for the last few months, she's finally started to sit and play with toys (in her own way) for a while, which along with reduced screaming makes a big difference to how I feel about each day. I hope your Portage person comes along soon, and is as good as ours has been.

The Hanen book isn't just for non-verbal children, it lists a few stages of communication, suitable up to 6 or 7 yo. Definitely recommend it. It really helped with improving my DS's play and our interactions.

Thanks Grey24. It is great that you are able to see the positives...I can somedays but this isn't one of them! I am still trying to accept this new life we have compared to the one I imagined when I was pregnant,DS my first. Mumsnet has been a great source of support to me on bad days.

Send me a message poster if anyone wants to chat anymore.

Yes DS was exactly the same. DS (5) still struggles to play and occupy himself but his range of activities has widened and he will stick with one thing longer. He also loves computers and at that age would play with vtech toys, and the computer for long periods, which obviously isn't to be recommended but if the alternative is marriage breakdown, then excessive computer time is something I can live with. DS could use a computer mouse from age 2 and could do games on poissonrouge.com which is very cause and effect. He also loved marble runs, a pop up ball popper toy, cars that go down ramps.
We would also just take him out in the buggy, he was usually fine in the buggy if he had a blanket to hide under and although I felt bad that I wasn't interacting with him / he wasn't learning, it broke up the day to just get out. Or even a drive in the car.
When its not your shift try and do something for you, not just chores, something thats a total break.
Swimming was ok. Also some SN groups run soft play / bouncy castle type sessions at weekends where door opening is considerable normal.
Could you have lunch with your DP during the week when your son is at nursery? Weekends and evenings were a disaster for us as we were so tired, so lunch can sometimes work better.
We did ABA (applied behaviour analysis) from just before 3 and we did most of it ourselves just getting a supervisor to train us. Its not restful, DS needed it to be quite formal structured therapy at that age, but does give you skills to teach him which when you see progress makes you feel much more hopeful.

monkey I know exactly how you feel, can only sympathise. My DS is also 2 years old and althouh I am very sure he is on the spectrum we do not have an official diagnosis as yet.

He is very hard work sometimes and we do get quite exhausted with the constant watch we have to keep on him. basocally you have to be with him and stopping him from gettng into trouble or hurting himself every minute that he is awake. He will climb up onto anything, runs away from you when you are out (and just keeps running headlong, does not turn back to see where you are etc), there is screaming (well, sometimes the most grating screeching), violent head banging, even on hard floors and walls resulting in bruises, and he just won't/can't understand instructions etc. The door fascination also really rings a bell with me. Also turning off all the switches in the house so all appliances and lights are constantly having to be turned on, reset etc. Some days are worse than others and I am hoping that it will get better one day.

I got him a trampoline for Xmas. He used it to climb up on and get on top of a shelf, so we have had to take it away.

PS I have ordered the Hanen book (already have their other one It Takes Two to Talk) and waiting for it to arrive. Waiting for both private and NHS assesments, and considering options including continued SALT, OT, and possible ABA. I feel we are doing all we can right now, but the whole thing is very wearing, and frightening, sometimes.

Dudesmummy, I'm not sure how different More than Words will be to It Takes Two. It's basically the same program but More than Words is aimed at DC with ASD and the other at other speech delays. I hope it's different enough to be worth the cost, sorry.

Well, I am trying to do all the reading I can at the moment so I am sure it will be worth it! Even if it is just a little bit different from the other one. I think the way I am dealing with the worry and frustration is by doing as much as I can at the moment to inform myself really well. It helps and feels like I am at least doing something...

The way I see it,

"It Takes Two" effectively assumes that your child is ready and willing to communicate.

Whereas "More than Words" is the starting point if you can't make that assumption - it goes deeper.

Ok, that is helpful, still waiting for the book. Like others here, I think my DS is very very frustrated by our inability to understand him, and that is driving a lot of his "difficult" behaviours. I know he does want to communicate, but he just does not seem to have made the connection that speaking would be a way to do it. So he tries pulling you, pushing you, screaming, banging, throwing etc etc. Like the OP, I am hoping against hope that things will get better. They are pretty hard right now. I wish he would just get the idea that we are here and love him and want so much to hear what he has to say and what he wants.

Can i third the trampoline idea?...if your son can take to it safely..it could be a life saver...worth a try anyway. Ds loved his from about 18 months upwards. Just one of those small ELC indoor ones with the handlebar.

I also spent quite a lot of miserable days in a wet park while ds just seemed to wander aimlessly . It's grim and lonely...you have my sympathy
lol...and then he discovered trains and the building and knocking down of bricks and the building and knocking down of bricks and the building and knocking down of bricks. Be careful what you wish for

He's now 14

Is there a support group near you? Someone else in the park also with a 'how did i get here' look on their face perhaps? People (and forums like this) helped me a lot

Sorry to hijack, just to say that DS1 2.8 dx GDD ASD sounds similar, I have started reading more than words, started ABA but not much luck yet. ((hug)) and thanks for the post, have learnt a lot.