Has anybody’s child with autism been like this and made progress?

[L0ts]

I guess I’m after some words of solidarity. My four year old has always been the kindest and most gentle little boy, he really is lovely and wouldn’t hurt a fly. But recently life is getting more and more challenging and I realise that for him it is probably worse than it is for me because I can tell he’s so frustrated.

So he isn’t non verbal but he does not communicate at all, he knows some very basic phrases and instructions but I would say 75% of the time he has next to no idea what you’re saying to him. I’ve never been called mommy, never been asked a question, I’ve never had a conversation with him at all.

He does well at nursery, as in he doesn’t mind going, last year he loved playing there but I think recently they’ve said he just paces the classroom, he isn’t interested in doing anything at all. He suddenly hates baths, won’t walk anywhere outside, usually a lover of parks and soft plays but won’t go anywhere at all. He is still in nappies, I wouldn’t even know where to begin with potty training, he doesn’t understand anything about it. He had just started telling us when he had pooed but now is suddenly taking the poo out himself and getting in a very obvious mess when he does.

All he likes to do at the minute is sit on his tablet and watch YouTube. Which I don’t stop him from doing because any interest is an interest at this point and he’s heartbroken when you stop him. It’s almost like a safe place for him. He has made some progress since a year a go, no longer breastfeeds for comfort, no longer sleeps in our bed, no longer needs assistance to fall asleep, no longer opens every drawer in the house and empties its contents etc. He does have more of an understanding of things than a year a go I suppose but it is nowhere near what it should be at all, not even close.

Please, has anybody had a child with autism be like this and make progress? I’m desperate for some positivity, I am quite literally sat here in floods of tears.

How did your little one finish up the school year @L0ts

@RiverRock22 Hello! He is still doing really well at nursery (he has about 3 weeks left now I think). They have what they call ‘work time’ with him and try in 5 minute intervals to do some sort of activity with him and it’s usually 50/50 to see if they can keep him focused long enough.

He has had his EHCP sent off and that was done maybe 3 months a go, school are confident he will be accepted and it will be in place before Christmas. He has good days and bad days there but the good do outweigh the bad. I think when I wrote this he was having a phase of doing nothing but sitting on his tablet, well that has changed. He is back to playing all day every day which is just lovely.

He now can understand more phrases such as ‘Do you want to get out?’ When he’s done on the swing, seesaw etc at the park. He’s a lot better with walking and holding your hand, although not for very long periods but it’s enough for now. He repeats A TON more things to you and even now will say ‘mommy’ to his dad when he wants me. He has now learnt how to take his shoes off too which to me is amazing.

I look back at a year a go when I spent my days and nights worried out of my mind over him starting nursery, I really thought he wouldn’t go and that would be it. But I would say it’s been a huge success despite the bad days. I am now worrying about reception and what that will bring but trying to picture myself in a years time reflecting on how far he has come.

Oh we also have managed a few poos on the toilet too which gives me confidence that toilet training will happen in the next year or so. Can’t wait to kiss goodbye to nappies 😂 He just overall in the last 2-3 months seems way more aware of everything happening. He spent 3-4 years in his own little world and now he seems to be finally coming out of it. It has come with more tantrums and meltdowns but they aren’t excessive and I’m still trying to see them as a good sign tbh.

I just reread my original post and wanted to add he also now LOVES baths again, I have no idea why he went through that phase but it’s back to normal. I also wrote he didn’t understand 75% of things you said to him and I honestly think that’s now decreased down to maybe 60%. He also scripted all day every day tbh, or he at least did a year a go, there was no meaning behind his speech at all. But now I hardly hear him script actually, he can occasionally but nowhere near as much as he used to.

He has had his EHCP sent off and that was done maybe 3 months a go, school are confident he will be accepted and it will be in place before Christmas.

If the EHCNA request was submitted 3 months ago you should know whether the LA is going to issue or not and if they are have a finalised EHCP well before Christmas. By week 6 the LA must inform parents whether they are going to assess or not. If they aren’t going to issue they must inform you by week 16. If they are going to issue they must finalise by week 20 and in order to do so they should send a draft by week 14.

@FloatingBean Sorry yes they have said they are going to assess. If truth be told I’m very new to it all and admittedly don’t understand it a great deal. I said in a previous post that since I had baby number 2 in January dad has sort of taken over school runs and meetings etc. and he is pretty useless with relaying the information back to me. Once September starts I’m hoping to get in to a routine and get back in to being more involved. Had a very bad c section recovery which took a really long time and was hit a lot harder than expected when second baby came along, a lot of post natal anxiety/depression.

Has all the right advice e.g. EP, SALT, OT been sought? Anyone asked for advice and information must respond within 6 weeks.

@FloatingBean Kind of making me feel
pretty pants that I don’t know the answers to these questions or really what you’re talking about. I wrote a very positive update but now feel kind of shit. We have a meeting with the school SENCO and who will be his new reception teacher in September next week so I’ll be sure to ask all the relevant questions. He does already have regular SALT session by a lovely lady who visits him at his school.

I was trying to help. Your post included content that indicated the LA were in breach of their statutory duties. My posts were trying to elicit more information so that I could advise you further.

Unfortunately, DC whose parents know the system, what should happen and can advocate for their DC get better support. It shouldn’t be like that, but it is and it isn’t going to change any time soon. If LAs are allowed to breach the law unchallenged they will continue to act unlawfully.

Sadly, without an EHCP DS may not receive the support he needs as the only way to legally guarantee the provision is via an EHCP.

Hi L0ts just wanted to say well done to you and DC for the progress you’ve made. My DS is very similar and also will be starting reception in September. I hope all goes well for both of them. Xx

@FloatingBean Sorry to derail the thread but I am also going through the EHCP process and am swamped by it all, I'd really appreciate some advice from someone who's been through it.

We had a EHCNA agreement to assess in March and I was advised by the LA that there would be a significant delay due to a lack of Education Pyschologists. After a long wait we now have the EP assessment in 2 weeks, is there a reasonable chance the EHCP will be approved and in place by September? I also have no clue about what the EP assessment will involve and feel like I'm going into it blind.

I also have the SALT contribution for the EHCP and there are parts of it I disagree with, the last time the SALT saw DS in was in July '22 and she wrote her contribution based on a brief telephone call with me in April '23. Would this have much weighting in the EHCP as a whole and should I make a fuss and get it changed? We also have a separate SALT assessment in the next few weeks but I don't know if the EHCP contribution would be relevant to the assessment.

@LittleCoffeePot The EHCP timescales are statutory, the LA must adhere to them and if they don’t you can enforce it. A lack of EPs is not a lawful excuse. If the LA genuinely can’t assess in-house within the timescales they should commission an independent assessment.

Email the Director of Children’s Services informing them they are in breach of the statutory timescales and if they don’t complete the EHCNA and inform you whether they are going to issue or not and issue a draft if they are ASAP you will be forced to pursue judicial review proceedings. If that fails contact SOSSEN (or another firm as SOSSEN has a waiting list at the moment) for help with a pre-action letter.

Timings will be tight, but there is a chance you could have an EHCP by September if you pressurise the LA and threaten JR. Don’t 100% rely on there being one in place though.

The EP assessment could include asking you questions e.g. DC’s history, family life, strengths/weaknesses, support already tried, what works/what hasn’t, future plans. It may include observing DC &/or tasks/interaction with DC. They will also likely speak to the education setting if DC attends one.

When you email the Director of Children’s Services I would mention the SALT report not being adequate.

This sounds so like my DS who is almost five. Apart from the walking outside, my DS loves walking outside but has no danger awareness and will sometimes just pull out of my hand or my DH hand and run off it's scary.

DS like yours has no real speech, single words sometimes but v rarely yet can sing the nursery rhymes under his breath, counts, does abcs, shapes etc, just like yours. But I've also never had mummy or anything like that. The phases of difficulty also come and go like your DS.

Potty training is also a no go for us. We have been trying since he has been 3.5 but it's like he doesn't even care. It's hard. I'm sorry you're so upset, I have days like that too. Cried myself to sleep the other week quietly so I wouldn't wake DH and have him worrying about me. He seems to be able to cope better as he isn't a worrier like me and focuses day to day.

Big hugs to you, you're doing a amazing job mama!

Reading this was like reading a paragraph on my son.
Exactly as you stated was exactly how my son was, he's turned 6 this year.
He has a full-time 1-2-1 in school, was very mute untill 5, still can't communicate his emotions BUT he's now made friends, enjoys playing in school, doesn't enjoy learning (unless they are his interests) but he is actually thriving in school now. Ear defenders have changed school for him, have you tried them for your little one?
What fits one doesn't fit all, just a suggestion.

Home life is completely different, some weeks he just wants to be on his iPad, doesn't want to go out, doesn't want to do anything at all and won't even communicate with me.
Other weeks, he wants to go soft play, he wants to venture out and talks my head off.

This is just some word of advice and it's easy for me to say BUT I have been exactly where you are.
I spent so many days and nights crying and worrying that my son wasn't as the 'book' states he should be, but our kids will do it in their own time when they are ready, not when the world says they should.

It's so so hard to watch our kids struggle and I'd be lying if I said I still don't get them odd days, I do.
Your son has come on so much in a year, the sleeping alone is amazing. Well done mama 👏🏼next year you'll look back and realise how much more he's done.

Please be kind to yourself, you're doing your best and it's enough. I promise as each day passes you will see light. ❤️
^^

@Peanutbutter7 could you please share your potty training technique?

For the DC who can recite rhymes but not use words like "Mummy" - they could be Gestalt language processors, this is very common with autism. I've found this page hugely helpful and interesting on the topic if you'd like to learn about it:

https://www.instagram.com/bohospeechie/