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SEN

Here you'll find advice from parents and teachers on special needs education.

Please can someone help ? 🥲

6 replies

Milomiles123 · 25/09/2025 14:00

Hi this is going to be quite long so thank you for reading! I really need some clarity/advice/opinions about my nearly 2 year old.
So since being baby he’s always seemed ‘different’ ie feeding issues, tube fed, food aversions. Then when he hit about 9 months we noticed he didn’t respond to his name and span wheels and anything really a lot! As he hit 1 year he had repetitive movements like head shaking, pacing, banging objects together and dropping them repeatedly to hear the sounds they make and this was like hours of the day. He never played with toys. As he aged signs of autism kept coming. So I’ll list them here:

  • stimming- spinning, eye tracking, arm flapping, head shaking, tiptoes but not all the time, pacing, vocal stimming, fingers flicking, standing on his head, repetitive jumping, covering ears (sensory not because of sounds), flicking his head, mouthing everything, clapping, rocking. They come and go/ swap and change but they’re ever present.
  • no response to name (better now but still limited) , no pointing, no following a point, limited gestures- he learnt to wave then regressed now it’s back same with blowing kisses but they’re always when prompted never spontaneous, doesn’t shake head yes or no, clapping is rare but he uses it to stim sometimes. He can sometimes high five.
  • interest in toys is very minimal it has got a little better but he still mainly spins wheels, like to push things like bikes but not ride them, he now likes light up and musical toys like baby toys he’s very motivated by music but for the most part he just makes a mess and dismantles things. He never used to pretend play but now he talks on a phone but that’s the limit to his pretend play skills.
  • when in public he’s always been a nightmare and it gets worse and worse as he gets worse older. His running off is UNREAL he needs to be in a pram and harness 24/7 he will not come back and absolutely will run into roads (we’ve had near misses before), he’ll be into lakes and water without a second thought. He doesn’t engage with like the park he won’t go on the equipment he wants to just run round the edges, if you go to the farm he’s not interested he’s just running off. We have like 1 safe space to go.
  • his climbing is rediculous and so dangerous he cannot be left anywhere for even a minute. He’s always engaging in dangerous behaviour like we had to get rid of the trampoline but he insisted on running round the outside edge instead of bouncing and he ended up in hospitals with a head injury. He’s always throwing himself around and enjoys being squashed, thrown and span ect.
  • he is so obsessive with things and always has been. If he gets fixated it’s all he can do you cannot distract from it. Ie if he’s climbing on something you can tell him no get him down a million times but it will not stop till you physically leave or remove whatever he’s trying to do. Same with food if he gets stuck on a food (at the moment ice cream) it’s all he wants he asks for it 100 times a day and won’t have anything else. One time it was lollipops and he realised they sold them at a specific park. Once he found out he wouldn’t do anything at the park other than try to get these lollipops and we had to stop going.
  • personal care is horrendous. Nappy changes, clothes changes, teeth brushing, showering it literally takes to people to restrain him to get it done
  • his understanding is incredibly limited he understands the item blanket and dummy that’s all and now can get them. But he cannot follow introductions like ‘get the ball’ ‘give it to me’ ect.
  • he can get extremely distressed in new and busy places and will want to leave it’s always been the same and if children get too close he gets upset
  • his eye contact seems good on first glance but only if he’s initiating the interaction. If you get closer to him and try to talk he won’t look at you he will keep moving his head or if he’s playing he doesn’t look at you he looks at what he’s doing.
  • doesn’t eat or drink much at all. Literally about 3 foods and often goes a whole day without eating. He’s severely iron deficient. Under dietician and often loses weight.

there are probably more points here but this is the main.
so onto my issue-
although he has all these difficulties he has some great strengths. He likes adult engagement to a level. If you’re trying to play a game he’s not interested but he does like to come up to you and babble and if you chase, tickle or make silly noises he’s so engaged with you. But when it come to kids not so much although recently he will occasionally briefly babble at them. If they get too close he gets upset and runs away. He doesn’t ‘play with them’

more recently Romans language has exploded! He was virtually non verbal till the beginning of this month with the exception of ‘ta’. However he’s always been able to sing songs, count to 10. Now all of a sudden he is copying what you say. If you cough twice he will cough twice. If you say something in a singy tone so will he. He will copy things from the telly. Now all of a sudden he can say ‘bye bye see ya later’, ‘here ya go’ , ‘hi are you okay?’ Like whattt! For the most part he doesn’t know what they mean but with ‘bye bye see ya later’ he will say it randomly but also will use it contextually. Although he sticks to this one phrase. I’ve heard him saying ‘I digga i digga’ over and over and over. He’s heard it off the telly. The other day the neighbour waved from the window and they said bye bye see ya later to each other. Now every times he gets in the car he’s repeated it and waving at the window religiously like is this typical? Like for the most part the things he says he had no idea. But he does have some function words too now. He can say ice cream, thank you, uh oh, sweet sweets. He had said other words before shoe, car, choc choc, yog yog. But I find that he loses them once he loses interest in them. Now he’s obsessed with ice cream but I predict once he’s not the word will go. The thing is he can’t answer a question like ‘what’s this?’ And answer that’s it’s ice cream. He also doesn’t use words like mum, nan, juice, more, up, down ect. But he can copy them. If you shout the dogs name he’ll shout it but he won’t use it himself.

my problem here is now I’m not sure if he’s autistic at all. People are passing judgement like at a group today saying he’s talking now and it’s typical because kids just learn language differently. Like at first glance he can seem typical he’s not stood in a corner by himself he can be bubbly and happy with adults and he can use these words randomly which to others Seems like he knows what he means. Like he did say to a woman ‘hi are you okay’ so he used it right but has no clue what it means. If you ask him he can’t answer it. I don’t even know what I’m asking but I’m second guessing everything. Like maybe he’s just quirky and was a late talker. Or is this echolilia? He’s due his 2 year check and referral in 2 weeks and now I feel like she’s going to think the same as the woman today. 😩 I’m sick of having to decode everything all the time.
thank you for reading, sorry it’s so long, I think I really needed a rant!

OP posts:
Milomiles123 · 25/09/2025 14:10

I should also add he’s got quite strong imitation skills. He can copy things you do and uses things like items correctly. If you put your arm up he can do it. If I pretended to feed a doll he would probably copy but it’s not something he would do off his own back. Like with the language if I say to him one minute he’ll say it if I say come here he’ll say it. Do all kids do this?

OP posts:
NellyBarney · 25/09/2025 15:40

Are you worried that your ds won't receive an ASD diagnosis and subsequently no support because he now speaks some words? Please don't worry about what another mother at a toddler group says. Many people think that they are kind if they say things like 'Don't worry, he is just a late bloomer' or 'All children develop at different speeds but get there in the end in their own way'. It's not kind though, is it, because it negates and invalidates the real struggles parents of children with SEN and/or disabilities face. Professionals will be able to spot signs, whether it's for ASD and/or something else, but it sounds very likely he is autistic. Having some words definitely doesn't rule out autism. I would prioritise seeing an Occupational Therapist to see what could help your son with his sensory stimuli seeking and how to keep him safe. They should come and visit your home to ensure it's safe and recommend aids like e.g. weighted blankets. Has your son been seen by a SALT yet? Is he going to nursery yet? He sounds like he needs an EHCP. An EHCP is more important than any diagnosis in practical terms, as it provides support in nursey/school and also any additional therapies needed, but of course, a diagnosis helps understanding his needs so good to focus on both. When you say you are seeing someone in 2 weeks for a referral, I take this to mean referral for ASD assessment? You can ask to be referred via the Right To Choose pathway to a private provider for free and can check their waiting times beforehand. In many cases, it will be much quicker that way, depending where you are. But you don't need to wait for the outcome before you can request an EHCP Assessment. You can also apply for DLA.

Milomiles123 · 25/09/2025 20:36

@NellyBarney thanks for replying, yeah that’s pretty much it I’m worried everyone will only see the positives and not the struggles he has and silly comments like she made just fill me with worry. Like you say it completely takes away from the daily struggles. I’m also just confused by the language in itself I’m not sure if it’s echolalia or something maybe? When the health visitor comes in 2 weeks she’s going to refer him to the services (hopefully) but it’s a lengthy wait. He’s starting nursery in January, again I’m scared they will not see what I say after seeing how these people view him. Hopefully they do put all this in place though, I’m going to look down right to chose thank you! I jsut need to find one that’ll assess a 2 year old as a lot don’t. But yeah exactly that she’s coming to refer him for assessment ect as they have denied all previous referrals due to not being 2. But I do receive dla for him already. I’m just in a mental battle every day and looking for some clarity it’s really affecting my mental health 😒 again thank you for replying! 🙂

OP posts:
OhMaria2 · 27/09/2025 19:26

This sounds like my son. He started speaking fluently at about 3 and a half but still not to the sane level as other children. He had all the same behaviours that your child displays. Autism can look like many things, dont let it put you off going for a diagnosis. You also DONT need a diagnosis to find and join Autism or social communication disorder playgroups and societies or attend sen specific sessions and quiet hours.

Milomiles123 · 28/09/2025 19:53

@OhMaria2 oh really that’s amazing and thank you. I think people giving their opinions who don’t really understand has confused me abit. I definitely will be going ahead with the diagnosis process when the HV comes in a couple of weeks. We do attended a couple groups it’s great for him. Can I ask if and when your son started pointing? Thank you for replying!

OP posts:
OhMaria2 · 28/09/2025 23:21

I cant remember when he started pointing. Everything was delayed and I just remember being really concerned all the time at every stage. He appears low needs in his nursery settings because he is happy and in a routine, but we cant go out for meals, the park is a nightmare of trying to escape, we've never been on holiday etc and yet we are still being told he'll grow out of it, its normal for his age. We're just ploughing on but we do feel a bit stuck between two worlds. Good luck with everything!

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