Feeling deflated and shattered. Autism.

[Hereshopingforimprovement]

DS almost 3 with Autism and virtually non verbal is going though a particularly bad phase of meltdowns and worse than usual (although always terrible) sleep. I'm knackered and deflated.

Yesterday he had two huge meltdowns, one on the middle of the road (quiet street with no cars at the time thank goosness) and once on the pavement right beside the main road where he tried to run onto it after trying to bite my about 20 times .

I'm struggling to know what to do in these situations, I was terrified and afterwards I felt like a terrible mother and everyone was staring. I did eventually get him calm but he's huge and very strong so I'm worried what will happen when he gets bigger. Does anyone have any advice?

Hi OP I'm so sorry you had such a bad day yesterday, please don't feel like a terrible mother! I've been there and the meltdowns near roads are alway scary.

Do you think it could be sensory issues that are causing the meltdowns? Just wondering if it may help if you had him in a pram? My ds is 4.5 now and we still sometimes use a pram if he's tired or feeling overwhelmed, simply because it acts a bit like blinkers and I think he feels safe in the enclosed environment.

He's very under sensitive to sensory input so I don't think it's noise etc. It seems to happen of there is a sudden change of plan or direction or if he doesn't get what he wants but they aren't like tantrums they are full on head banging, biting himself, kicking, hitting and screaming meltdowns where he has no control whatsoever.

That sounds familiar! I feel like I'm constantly having to pre-empt what is going to upset my ds.

A couple of things that sometimes work for us (although obviously not at the point when he's actually having a meltdown) is distracting him with something he loves like chocolate. That is before we get to something that I think he might run off to. Also when we need to turn around or change route, I tell him what we are about to do in very simple language and then count down to turning around. Do you use any visuals with him? My ds is usually a bit too distracted to react to visuals when out but maybe they could work in your case?

During meltdown it's just a case of keeping both of you safe. Easier said than done as my ds seems to develop super human strength when having a meltdown.

I'm just so worried about him. The paed didn't exactly fill me with confidence when she said to wait to get ed psyc involved till after he starts at nursery in case they change their minds about taking him as he's out of zone. I don't think his dad realises how much he is affected, he tries to sweep it under the carpet but cannot handle him at all when he is in meltdown. I am so scared for the future.

I'm sorry you're having such a tough time. I think it's often harder for the non-primary carer to deal with challenging behaviour because they simply don't spend as much time with the child.
Is this the first time your ds will be going to nursery?

He's in private day care a couple of days a week but he's been going there since he was 10 months old. I am terrified about school nursery, I just don't think he will cope with any structure. He has very limited understanding and doesn't cope well in structured environments. He doesn't take direction and has huge meltdowns when he can't do or go where he wants. He is also prone to running/bolting and dangerous climbing.

We kept our ds in his private nursery as I didn't think he's be able to cope with the change. Have you started the EHCP process?

Hi here's hoping. Just wanted to say you sound like you are a wonderful mum in a hard situation. My DS is 4.4 now and 3 was our hardest Yr. Meltdowns freuqbet combined with now longer beinf a little toddler are tough. We still have our tough days but generally things are easier than they were. We also use strategies like Liv, try to distract with most loved items before something triggering happens or is required and always let them know there is an obvious end point to the difficulty of you can. For example little sand timers that he can see running out. So he knows when he can finish /return to comfort. We even use them for introducing new items of clothing for example sun hats and bud up the time of wearing gradually. Keep hoping :)

We are in Scotland so the process is slightly different here but paed advised to wait till he has started before calling any meetings as they may suddenly decide he no longer has a place otherwise as we are out of area. She thinks school nursery will be good for him but I am really worried.

I don't know anything about he Scottish system. Are you saying that the pead doesn't want you to tell the nursery about your ds before he goes incase they take his place away?

a very structured setting can be helpful as long as it is tailored to your child's needs. So it they were expecting him to sit down and listen, that's bad structure, but if they did the same routine every day and that routine was singing or bricks or washing up the toy cups or reading a story to him, well you might find he liked it and felt safe. My ds went to a Montessori nursery and thrived there, the practical structured activities suited him very well. At Reception he found it much harder because there was more expectation of free play - and I had to take him out at lunchtime because it was all too much. Also ratios are the key thing, ds needed a quite high ratio of adults to children.

I don't know if you have come across the Out of Synch Child? my son varied between under and over sensitive, so liked deep pressure and loud noise (think heavy beat music) lots of climbing and running, but also hates the textures of some food and having his hair cut for example, head touched. It can go from one to the other.

Second use of a buggy, you can get ones suited to older or heavier children, it can be a safe space and make all the difference between being able to get out and feeling trapped or angry with your child for running off.

Ds was a bolter. He is about to take his Gsces now, and planning to do politics A level. The future can hold all sorts of opportunities, don't despair.

Liv that's pretty much what the Paed said. The nursery we applied to is not only out of zone but it's out of council area too. We have got a place as it's not quite full but because we are effectively last on the list the Paed is concerned if we go in and have a meeting his place may suddenly become 'unavailable'. The nursery are aware he has autism but they aren't aware of any details. I know the school have experience with autistic children but I am now concerned after the Paed saying that

Wow I'm not surprised you're feeling a bit stressed about it. Hopefully it will work out for you and they can get the EP quickly to support your ds properly. I hope you are having a better day today!