Where does autistic DS fit in?

[MashaPotato]

I’m having a really tough time at the moment 😥 I’d really appreciate some advice from anyone who has an autistic child. DS is 2 and it’s looking very likely he had ASD with ADHD (not officially diagnosed obviously as still very young but under investigation with paediatrician and there’s no doubt in my mind).

Home life is generally good as we know pretty well now how to deal with his behaviour and meltdowns etc. Lockdown really has been a blessing for us to be honest. But this is where I’m really starting to struggle. Since lockdown has eased we’ve attempted starting pre-school/nursery - disaster. We’ve tried a toddler group - also disaster. Baby football - again, disaster. We’ve been doing swimming lessons which he’s enjoyed but even this is starting to become a nightmare because he just can’t listen/follow instructions, is so clingy to me, and to be honest it’s just so disheartening to see how behind he is compared to all the other children in his class. I feel like I want to be able to take him to these kinds of things but there really is no point. Do autistic children just have to miss out on these kinds of things? My heart breaks thinking about the future and how much harder this is going to get as he reaches school age etc. Right now I feel like he’s just going to get left behind and forgotten about because he doesn’t seem to have a place in the world. Please tell me he does 😔

Aww sorry you are feeling like this.
My son is Autistic and he was a nightmare at that age mainly due to sensory issues and not liking being around others things have greatly improved, he's 9 goes to a mainstream school with support and enjoys joining in with others - still hates football though.

Is he under a child development centre? Can you find a really good nursery, pre school that has a good sen provision? My lo went to the council run one that has an sen department - he started in the sen room with 121 support as he developed he was moved into mainstream nursery again with full support - this is before any diagnosis.

Have a look to see if there is a parent partnership organisation locally to you I found them really helpful and a good source of activities and interventions that are available locally.

He enjoys boxing, swimming (had private lessons) dancing and musical theatre now.
Whilst he’s always been on the outskirts of friendship groups he’s always been included at school and is liked as he is a bit of a class clown & very kind. In this part year he’s made a best friend and is going on his first sleepover next week!

Like you I was deeply worried when he was little, but with help and support things have improved- I still worry for his future of course and don’t know if he’ll ever be able to live independently - but right now he’s loving life.

Thank you so much for your reply! I’m glad to hear things have improved for you son with the right help and support. It’s such a worry isn’t it, the future always feels so uncertain. I’m really struggling at the moment with finding organisations that can help us, I don’t know where to even start! I feel likely we’re undergoing so many ‘assessments’ but not actually getting ‘help’ or directed anywhere 🙆🏼‍♀️

I’d absolutely love to find a nursery with an sen department but these seem to be non existent in our area! Or at least impossible to find 😖 xx

It is hard and I know exactly how you feel!
Google Parent Partnership for your area I think they are nationwide - they are really good and helpful in advising what he is entitled to and what’s available.

Also look on your councils websites for disability services - you can contact any of the services without a diagnosis - they should be able to let you know what’s on offer.

Contact the National Autistic society again they can advise on what he’s entitled too and where to get help.

He’s only very young right now so any help that’s available take it.

Think about what he does like doing. Mine would never sit still so we used to go for lots of outdoor treasure hunts, park - he was/is obsessed with the swing and would spend hours on it also obsessed with animals so visits to safari parks/zoo etc.

I remember attending a particularly awful toddler class all the other children sitting in a circle singing songs - mine running round with the toy brush sweeping the floor 😬 we didn’t go back it wasn’t for him.

How’s his speech? Is he under salt?

Also ask your health visitor for recommendations of available services.
Don’t be afraid to ask for help, he’s entitled to it.

Oh and call or email your councils sen department and ask if there are any councils run nursery’s with sen provision. Good luck xx

This is honestly so helpful! I can’t thank you enough!!! Your experiences of toddler groups etc sound identical to mine, even being obsessed with swings - that is my son!! I’m definitely realising now I need to be more picky with where I take him. He’s much better suited to soft play where he can just run around and let off his hyperactive tendencies.

Speech wise he doesn’t say a word and this is a huge worry of ours. He literally said mama for the first ever time last week so I’m hoping that will continue. We’ve been referred to salt but still waiting..

Thank you so much for all your advice 🙏🏼 I really hope your son enjoys his first sleepover! Xx

Aww I hope you get somewhere with it, I’d imagine things will be more difficult than usual due to Covid.

I was told by occupational therapy that my son is a movement seeker - the moving calms him down, He never keeps still even now somethings always tapping or jigging somewhere 😂 but it explains why he likes the swing etc. One thing that was good for him was a space hopper - he could bounce about or even just sit on it and move about a bit if that makes sense.
Soft play is great for them they can definitely burn off some energy, if you go with friends try to organise with only 1 child so he’s not overwhelmed.
Oh it’s fab hes said Mama 😊 how lovely! and try not to worry I know the spectrum is huge and they are all so different, mine didn’t speak until about 3.5 - can’t shut him up now!
You could research some salt techniques whilst waiting for an appointment that are appropriate for his age.I seem to remember them using a large cloth bag with familiar items in and pulling one out at a time and saying the word. - try to get him to look at your mouth whilst saying it and hand him the object or put in front of him if he won’t take it.. only do for a couple of minutes at a time,
I remember a magnetic fishing board game too - if you can get him interested - and ask him to catch a ‘blue’ fish etc and show him what to do.
Also if he understands enough - you could try some basic makaton techniques - look on line or watch Mr Tumble for some ideas.

He’s so excited about the sleepover - although I don’t imagine there will be much sleeping going on xx

DS is 5 and now and at now life feels very different to when he was 2 and I felt like you.

I remember trying a baby football session, dh is football obsessed and would adore DS to play, we did one session and it was awful and a just cried all the way home.

We did tumble tots from 6 months to 2.5 years and by the time we finished as DS was going to preschool I felt like I was the only one whose child wouldn't listen and cooperate and I dragged him out kicking and screaming , I often cried on the way home from then too.

Swimming, he loved it but it got to a stage that he couldn't follow the same instructions as the other children. It was disappointing but we did persevere and the teacher who'd know DS from a baby was fine with him doing his own thing.

All of this together with the loneliness, upset, anxiety over having a non verbal child and watching how far behind he is next to their peers. It changed me as a person and I'll never be the same. DS is will be an only child.

I too found myself at soft play, parks, informal playgroups. I went to an ASD playgroup run by the local children's centre which was small and welcoming with no judgement. DS started at preschool and after a term or so loved going.

Fast forward to now, DS doesn't have a diagnosis and goes to a mainstream school with a speech and language resource. He's thriving at school and has made some lovely friends.

He is the complete opposite of the child that I cried with as I walked home feeling so lonely. Not only is he talking but we still swim and he follows instructions and joins in, we've started football again and he loves it and follows instructions. I'd have never believed it 2.5/3 years ago this is where we'd be. I don't know whether he'll get a diagnosis, we've been on the waiting list for 2.5 years and he's changed so much, life is so much more settled and enjoyable.

Don't try and put too much pressure on the both of you, do things that you know he'll enjoy which by default you'll enjoy. It's easy for me to dish out advice as I don't listen to myself but I spent a lot of time worrying about DS, to the detriment of my mental health, and I worry now, ironically, that I missed out on so much of his toddlerhood being sad.

This has really helped me reading about your experiences thank you so much @ChristmasCovid and @INeedtobealone xx

Your experiences sound so so similar to mine and I completely agree on the loneliness feeling. I know there are others going through the same thing but I’m surrounded by family and friends with ‘typically developing’ toddlers and my god it’s absolutely crushing to see it. It’s really helped me to read about your sons and it gives me some hope that one day he might talk and things might get better! I’ve just got to focus on now and do what suits him/makes him happy. And go with however the future unfolds xx

Going through something similar @MashaPotato, my son is nearly 3 and awaiting diagnosis. I often feel like we don't belong anymore and I worry that feeling is only going to get worse as he gets bigger and harder to manage.
Seeing my mum friends from baby groups and their kids is soooo hard now that I've really pulled back from most, it's just too depressing seeing what they can/are doing v. Our life.
It's nice to read the comments from the other posters and see there us some kind of hope.

OP we have a child similar to yours at our nursery, a handful , likes doing their own thing , has certain obsessions
we try to follow and use their interests with them as much as we can rather than make them fit into our world/way of doing things. that way its less stressful all round
Instead of swimming lessons why not just go swimming with him hes only 2 and many most kids at that age struggle with/ignore instructions (ive worked with loads)
as the saying goes 'comparison is the thief of joy'

Sending a big hug to you @Rosebud100 I completely understand how you’re feeling. I’ve really taken a step back from friends and family for the same reasons. It feels very isolating but that’s better than how gutted and upset I feel every time we meet. I sometimes wish I could stay in lockdown forever just so I don’t have to face people 😔

Thank you @simonisnotme I think you’re right about swimming. I need to take the pressure off from doing ‘structured’ sessions. I really hope to find a nursery that is accommodating to his needs, we had a complete disaster trying a preschool last month and it’s really put me off!

maybe put the question onto your local FB group page, or try and see if a primary school has a 2yr olds group that you may qualify for
everyone has a place you just need to find the right one for him and you

Can I ask you ladies how/when you had any luck with potty training? This feels like such a daunting milestone for us, I don’t even know when to attempt starting. I feel like it’s going to be impossible due to DS not being capable of listening to us or understanding/following instructions! Xx

We potty trained DS at 3.5. It was our first attempt as we really didn't think he was ready before then. I too was daunted but leading up to it we spent about 6 weeks only changing his nappy in the bathroom, showing him the PECS symbol for toilet every time we changed him and put him on the toilet before his bath every night. He did his first wee in there, I think by accident, after about a month.

He had shown signs of readiness, hiding to do a poo, nappy being dry for a few hours at a time then suddenly very wet.

We followed the Oh Crap method, with added chocolate buttons, and within a week we were done and DS has been very reliable ever since. We did it at Christmas, sounds mad but all our family commitments were over by the end of Christmas day so we started Boxing Day. Dh was off, plus it was the longest stretch away from preschool other than summer, plus DS was off to school that September so we had to give it a go. We were stuck in, ironic now with COVID, but lots of new toys to play with thanks to Christmas and tv to watch.

Hi, how’s it going?
He was about 4, he started showing signs that he knew when he was going for both a wee & poo.
We introduced a potty and he got a love heart if he went on it, tbh he was really good and got it within a week, I honestly think if we had tried earlier it would have been a disaster, although I did come up against criticism from grandparents at the time asking why I wasn’t training him before.
I’ve just remembered actually he went to stay with mil for a few days at about 3 - she clearly decided he needed to be trained and bought a potty & pants. I remember FaceTiming him & she told me he’d had a wee on the potty & there was no going back to nappy’s. when I called again the next day he was back in a nappy - I never asked as didn’t want to gloat but I can imagine the mess he created 😂😂 at the end of the day he just wasn’t ready.
Don’t rush him it will only cause stress for all of you, look out for signs that he’s aware that he is ‘going’ maybe have a potty in the bathroom so he get used to seeing it etc.
He’ll get there, like I say mines 9 now and the fact that we wasn’t trained till a little later than average has made absolutely no difference. xx

@MashaPotato I am in exactly the same situation.
My second DD is 2 years old. She has most signs of Autism and ADHD, she is not talking yet. Even non verbal communication is none existent. She still can't wave bye bye, she doesn't know how to point.

I took her to a music class, biggest disaster. We tried swimming, gymnastics, nothing works.. I always leave in tears.

We started pre-school last month, this week the nursery manager had a meeting with me that they can't keep her anymore for safety issues. She climbs everything, she screams, she keeps trying to open all the doors non stop. I am heartbroken and feel so so so lonely.

We haven't got any sort of help. GP referred her to a paediatrician who rejected the referral due to her age.

I can't find any local groups or mums to talk to. I read your post and all the replies, I cried but then I felt slightly better reading about the kids who are much older and who are doing better.

I do believe each child is special, and each child should be giver a chance to explore and learn, even if that means a different way.

I am not looking for another nursery for her, I have no idea what to ask when I talk to them? Whether they can cope with her? Whether they've dealt with kids like her before?!!!

@MashaPotato I wouldn't worry about potty training yet. My son is nearly 3 and has started to indicate when he wants to wee/poo and has actually used the potty a few times his week so we are going to give it a go, I wasn't expecting to start so soon tbh. There is no rush though, other toddlers I know his age have only recently been potty trained!

[quote motherof2daughters]@MashaPotato I am in exactly the same situation.
My second DD is 2 years old. She has most signs of Autism and ADHD, she is not talking yet. Even non verbal communication is none existent. She still can't wave bye bye, she doesn't know how to point.

I took her to a music class, biggest disaster. We tried swimming, gymnastics, nothing works.. I always leave in tears.

We started pre-school last month, this week the nursery manager had a meeting with me that they can't keep her anymore for safety issues. She climbs everything, she screams, she keeps trying to open all the doors non stop. I am heartbroken and feel so so so lonely.

We haven't got any sort of help. GP referred her to a paediatrician who rejected the referral due to her age.

I can't find any local groups or mums to talk to. I read your post and all the replies, I cried but then I felt slightly better reading about the kids who are much older and who are doing better.

I do believe each child is special, and each child should be giver a chance to explore and learn, even if that means a different way.

I am not looking for another nursery for her, I have no idea what to ask when I talk to them? Whether they can cope with her? Whether they've dealt with kids like her before?!!! [/quote]
@motherof2daughters
Hi I hope you don’t mind me replying to you, so sorry to hear you are going through such a bad time.
Please don’t give up on nurseries for you daughter, google your local councils SEN department and contact them to see if there are any council run nurseries with sen provision- there should be and the sen department will be able to point you in the right direction.
Contact your gp again and ask to be referred again to a child development centre - make sure you let the go know how much you are struggling.
Contact the national autistic society- for help and advice
Have a look to see if there is a parent partnership organisation in your area.
All the best x

I’ve just looked on my local council SEN section there are contact details for a early help support team.
Have a look on your councils website to see if there is something similar in your area x

Thank you all so much for your help and advice, I really appreciate it 🙏🏼

@motherof2daughters I can really empathise with you 💖 The worry and the loneliness is crushing. It’s such a difficult age because so many health professionals try to fob you off, but as their mother you just KNOW when something isn’t right. I really would contact the GP again and push to be referred again. Surely they have to take it more seriously now because of your pre school experience. Is your health visitor any help? We’ve recently had our ‘2 year check’ with the health visitor and I think they’re taking our concerns much more seriously now as DS failed on so many of the questionnaire questions.

I’m here if ever you need to chat. I don’t feel like I have anyone IRL who understands what we’re going through, but it helps so much to vent at someone who does. Please PM me if ever you need someone to listen xx

@MashaPotato
Many thanks. I don't know how to PM, I'm using the App? I definitely need to chat to someone going through the same.

Sometimes, it's the setting that's the problem. DS is autistic and when he was your son's age I had to abandon a baby music session because it was all very po-faced/do as you're told and frankly I was embarrassed because all the other children were compliant and he was a wrecking machine. Tried a different class (actually a very churchy one which wouldn't have been first choice) and it really suited him, he loved every second, bonded with several of the helpers, joined in most of the time, got on with other kids. Also went through the same thing with swimming lessons - with a couple of teachers he thrived, was full of joy, able to follow instructions, others were a nightmare and he ended every lesson in tears. Library sessions worked very well for him most of the time - the storytime ones especially, though crafts and singing were hit and miss. I learnt eventually that if I was saying no all the time, it wasn't the place for him but that didn't mean I had to abandon all activities.