To be sad DS isn't like DNiece/ Dnephew

[SleepingStandingUp]

We were at a famy party the weekend. DS, just 4, barely coped walking down the aisle as a pageboy and then had to be taken out of the church as he got really upset. He was loved and reassured, taken outside to walk it off etc. DNi and DNe both 12 months younger say perfectly.

He was largely OK for the wedding breakfast but evening reception was too much as soon as the music started. He had to go home. Again lots of reassurance and comfort. Needless to say DNi and DNe stayed til the end, played lovely, DNi even managed a nap! She also. Ade friends with some other children. DS def wouldn't have

And it's not just my prodigal niece and nephew. Took him to the park with friends, they all played together despite not knowing each other, DS played alone despite "knowing" them all.

It just makes me so sad for him. I want him to be a happy, secure boy who can make friends, cope with different environments etc.. He'll happily say Hi to strangers we meet, so it's not that he's shy. At nursery he'll let other kids play with him but he never really instigates it. He never tells me about any special friends.

I just feel like there's so much he's missing out on. He refuses anything like the kids fairground rides, ice cream, bouncy castles etc as I think they're too overwhelming for him and I'd never force him. I haven't taken him swimming because I don't think he'd cope with the noise. We did panto with school and he got hyterical literally from the first minute so I took him out, so we don't go to the theatre or cinema with him. I just feel like I'm failing to give him all these marvelous opportunities.

We'll go somewhere and he'll quote vocally tell me when he's had enough (thank God SeaLife didn't cost us full price!) and we try and balance his needs with practicalities so if we can't go immediately try and find a way to make him feel safer until we can etc.

I praise him when he tries stuff, we do lots of positive praise and he loves MacDonalds so it isn't all noisy places(!!!) so then I think is it just him being demanding? But Maccies is one noise - people rather than say loud background noise and people so there is a difference.

I just want to make him happy. He's 4, he should be having all these wodnercul experiences.

Ds1 is now 16 years old but he didn't like labels in clothing, or buttons even if you didn't have to fasten them. If you tried trousers on him that have the cardboard label attached to the waistband I used to have to put my fingers over the cardboard so it didn't touch him.

He would stand on the side lines at parties just watching all his friends run around, He refused to have his own birthday parties. I couldn't take him into the bodyshop as the smell was too overwhelming.

He certainly isn't shy he is just introvert. Every teacher at every parent's evening has told him he needs to put his hand up more in class (don't worry we had a way of arranging a compromise on that one)

But the one thing I always tried to convey was that I accepted for who he is not what other people thought he should be. My pat response to people saying why isn't your son joining in was why does it bother you so much what my child does?

I bought The Highly Sensitive Child book as I was that child myself and I still had no idea how to deal with it. Basically my parents said why aren't you more like your sister? So clearly I couldn't use that with my own son.

But, Ds2 is an extrovert, doesn't stop moving or talking. He's 13. When he was 4 he told me he could take himself to school and that I didn't need to be in the playground with him chalk and cheese.

Ds1 never lacked friends. There are plenty of introvert children it is just the extroverts are so loud we overlook them. Your son sounds completely fine, they are just little.

Mine were very similar at that age. And at 7 and nearly 9 they are now happy at school, have friends etc. They would still hate/refuse to do what you mentioned about the wedding, and would not find it easy to play with others. There's nothing wrong with them, that's just who they are.

@itscallednickingbentcoppers I think it's def true were more alert and aware of any perceived thing in case it's something rather than just assuming everything will be fine. When it so often isn't, it's hard to not be hyper aware.

@susan82 sending you a big hug. You're very welcome to hope on and I hope some of the replies have helped xx

@Crapplepie thank you x

@Cath2907 yeah he's a nightmare to feed too. He's still on tube feeds for half his calories, will only drink water and is very limited on his foods. He ate peas at the wedding though, bringing our vegetable tally to.... 2. All hail sweetcorn. Can't tolerate wet except for beans which he eats similarly to peas - rescued singley from their doom. Ice cream is too cold, youghurt too wet etc.

@Paihia2019 any idea how I'd get him tested for sensitive hearing? The different sounds from diff directioms is more of Nan issue that loud sound per se.

@Safirexx thank you

@BarrenFieldofFucks I agree there's nothing wrong with them. If anyone asks me what's wrong with him (physical stuff) they get bluntly told there's nothing wring with them as he's perfect. I hate the w word.

he's in nursery and the SENCO is involved as he has an EHCP for medical things, so I assume someone would have picked it up.

Please don't assume that anyone other than a child psychologist is qualified to make a judgement about ASD. Other professionals often miss it or, worse, declare that the child doesn't have ASD because they are unaware of how little they know about it.

OP, your DS sounds just like my DD1 who was diagnosed with AS aged 12. She was 'within the bounds of normal' in every way until she started high school and fell apart. Then we looked back and realised she had been struggling for years.

DD2 also has AS. She hates busy noisy environments and eating out but can cope with McDonalds because they all look, smell and sound the same and the food is identical, whichever one you go to.

Please read around ASD and see if you think it fits him. Even if you decide not to pursue an assessment at this stage, some of the strategies and the additional understanding of how he experiences the world could be helpful.

Children with ASD tend to struggle more socially as they get older so, if you feel this is what is happening for him and he does struggle more, especially in school, please don't wait around for too long before asking for an assessment.

Thank you to everyone for their kind words. Sometimes his differences are put up in stark contrast and its confronting. The fa t that the one person who spoke to me at the wedding about DS and knowing how hard it can be etc has a son with Aspergerd just kinda reinforced that, even though I don't think he's on the spectrum.
I'm going to speak to our lovely SENCO lady who will sit there kindly whilst I have a cry and whom I trust to help. I have little faith in the GP etc as, as someone uptbread said, everyone is so focused in his physical stuff thry just assume he'll be fine once all that is sorted. I don't believe it's that simple so I need to speak up for him

Even if you decide not to pursue an assessment at this stage, some of the strategies and the additional understanding of how he experiences the world could be helpful
This is really true actually. I have done some of the online tests and because he's ok with eye contact, relies on us for comfort, needs me to be watching and paying attention to what he's doing etc we score only borderline. But those bits he ticks, well all the more helpful strategies the better eh?
I'll take him to the library in the week (on our list of favourite places but jeez the kid suddenly gains volume lol) to look for some of these book ideas

Sensory Processing Disorder (SPD) is over or under sensitivity to outside stimuli. These can be one or more such as auditory, taste, scent, sensation etc. The NHS doesn't directly recognise it - I'm not really sure how to explain this - but private Occupational Therapists or educational therapists etc can diagnose and provide support.

Your DS sounds a lot like mine, except that DS was growing out of/finding coping mechanisms by himself a bit earlier. However, from my research, it's pretty clear that while my DS has an SPD (and this has been confirmed by OT), it's relatively mild compared to many other children. And we are therefore lucky in that coping mechanisms etc are easier to find and implement.

This is quite useful: www.facebook.com/sensoryprocessingdisorder/

If he's starting school this September, it's worth discussing with the school ahead of time. And I'd definitely consider getting a private assessment done. Even if that's all you do, they will provide some ideas and guidance which can be very helpful and if your school is any good, they will be happy to also implement some of those in the classroom.

He sounds very very similar to my DS. He was finally diagnosed with ASD at 8 after a private assessment as noone seemed to think he had it they just thought there was something a bit "off" with him. Don't expect school/SENCO to pick up on it as he is so young. It's not always entirely obvious but I look back now and think "how did none of us see these issues for what they were?!". My DS has gotten much less sensitive and much better socially as he has gotten older. He's at secondary now and has friends, enjoys school and actually wears a proper uniform with a tie (I never thought that would happen!).

Your DS may just be very sensitive but with everything you have mentioned I would get him assessed.

My 8 year old still only drinks water. I mean only. No hot chocolate, no juice, not even a slice of lemon in a glass of water. She refuses to try and I haven't bothered pushing this one. At 18 month sold she still projectile vomited her entire meal if there was even a hint of texture in it. I remember crying to the dietician in happiness the first time she picked up a biscuit herself. She wouldn't touch her own food and never put anything in her mouth. She had terrible reflux and they said it was just the after effects of that.

Last night she had jacket potato with butter on, 2 slices of margherita pizza, a large helping of sweetcorn and a chocolate chip cookie. Hardly going to win meal of the year but it still makes me smile. She also eats peas, broccoli, sausages, home made pie, sweet potato, pancakes, bananas, carrots, spaghetti, burgers and lots of other "normal" things. Banana is her only fruit but I am still amazed and delighted when she scoffs a McDs double cheese burger!

I also have an unusual child. After going through many of your emotions and grief, OP, I came to a realisation that changed everything. It was acceptance. Accepting my child for who she is in all her differentness. She is not unhappy overall. She is imaginative, introverted, loves reading, has left-field questions and thoughts - she is unique in all her odd and strange ways. I had to let go my expectations for what makes for a happy life (gregariousness, sociability) and my pride actually (to see an outgoing and confident child that I had succeeded in bringing up) and accept her. I shed many tears after this realisation. The angst has since gone, and I support her when things get difficult, celebrate with her when things go well. Just that.

Hugs OP.

All DCs are different. I have 3, all very different. Sometimes it's just their personalities.

All I would say is, although obviously it's good to notice other DCs behaviours as we do not all live in a bubble and we can learn a lot from observing how other people do things/what they do etc, with their DCs, on the other hand, comparison is the thief of joy and it's so true. I long ago learned to accept that one of my DCs in particular can be awkward and contrary in certain situations. It's just how she's made and I gave up wishing long ago that she could just be like X or Y in certain situations. I also accept that she is absolutely awesome in hundreds of different ways. That's just how she's made too.

If they are having a meltdown then I try to manage that, but if during the meltdown they would (for example) call people names, or kick out physically, then that is not an acceptable part of the meltdown though and I would always call that out. Your DS is still little at 4, but just a nod of advice going forward for an older age. I refuse to condone bad behaviour - that is, disrespect or aggressive/rude towards others - in the name of general meltdown/tantrum. Bad behaviour is bad behaviour no matter what (although there are degrees of it - for example a tired sick child displaying bad behaviour under provocation from a sibling is not the same as a perfectly ok child going out of their way to spoil something for a sibling. I do use common sense. However I would still call out the bad behaviour but in different ways, for those two examples.

Keep your eyes on your own DC and off other people's perfectly behaved DCs. I have developed a pretty good mental blind eye and thick skin for this! I know I am pretty good also at managing my DCs as best I can so I just crack on with that.

Sometimes a no-nonsense attitude can help. For example at a party if DC is refusing to participate in party game because they don't want to/would rather play with the balloons instead then I'll be very matter of fact about it that it's a party, that's what we've come to do so let's get on with it - rather than cajoling or persuading. Obviously if they are seriously meltdowning then a different tack is required, but sometimes we can fall into the cajoling/persuading/wheedling thing when a brisk "Let's get on with it, come on, up you get" attitude is better.

I find explaining a lot before an event helps. For example, even if your DS knew the drill at the wedding in general, I would continue to remind him up to the moment. Lots of repetition of the expected events and relating behaviours required. It's not failsafe, but it means they feel more in control of the events because they know what to anticipate.

Also, consider a reward chart. Reward what you want to see more of in terms of social skills. Start small. It could even be a sticker for passing a toy for another child, it needn't be playing for the whole event together.

the SENCO is involved as he has an EHCP for medical things, so I assume someone would have picked it up. They just put it down to him just being behind in his social skills

Your DS sounds a lot like my DS, who was diagnosed as autistic last year, aged 9. I suspect he also has ADHD.

Please don't assume that because he's being seen for other things, anything else going on will be picked up.

I asked DS's Y1 teacher if she thought he had ADHD. She said, no, nothing to worry about, he's just a bit socially immature - like his best friend, and they'll both grow out if it. (Best friend now also has an autism diagnosis, aged 10). I pushed it to the back of my mind for a while.

I asked his Y2 teacher if she thought he was on the spectrum. She made it clear she didn't (and the subtext seemed to be if he was struggling with stuff it was probably our fault somehow. She didn't like us much)

In year 3, I saw the SENCO and she said she thought it unlikely he's on the spectrum as he can make eye contact fine. (This is bollocks btw! Plenty of autistic people have no problem with eye contact!)

In year 4, I got some good advice from MN, and referred him via the Dr myself. The school got a new SENCO and once they learnt he'd been referred for ASD started to take us a bit more seriously.

In year 5, he finally got diagnosed as being on the spectrum. And it's much more obvious now, no one argues with me about whether he's ND or not now! (Bonus prize - I discovered I have ADHD!)

DS has always struggled making friends. He had no special friends in nursery, I totally recognise your description of parallel play. In reception he made a friend, but they grew apart in year 2. They were very similar in lots of ways (he's also autistic) and they argued lots!

He then had a friendship of convenience with a boy who'd been excluded by the "cool gang" so they were both the outcasts, essentially. This boy found new friends when they moved up to juniors and DS went most of year 3 without any close friends. But, then he made friends with a boy who's gone on to become his best friend , they're inseparable now. I'm so pleased for him. DS's friend also has some sensory issues. I think with kids with ASD especially, it's often a case of finding their "tribe".

^^ Bloo said it so much better than me!

Acceptance. Still choose your non-negotiables over behaviours, still keep an eye on any interventions that might help, still be open to learning new techniques - but for their benefit and comfort, not to make them conform. Overall, accepting your DCs as how they are and letting go of the angst that they aren't like this or that is better all round. And know the difference between what they can and can't help and don't apologise for what they can't - for things like finding situations overwhelming, not joining in playing etc - learn not to apologise or discuss it at the time with others just to show that you know your DC are different, or try and voice what you think other people are thinking, or comparing with other DCs present, so they know you know, IYSWIM. x

OP, from what you’ve said I would push for formal ASD assessment - those saying that all the professionals involved wouldn’t miss it may not have experience with complex needs. In my experience my sons had lots of professional involvement from people who focussed very much on their own specialism and disregarded all else. If I hadn’t pushed for it, neither of my boys would be diagnosed yet, especially as they’ve made good progress at nursery, with support from SALT and portage etc

Have you had help from portage? They’d be fantastic in your situation.

This doesn’t mean that your DS has ASD, that requires proper assessment but social delays and communication delays really mean that specific assessment from an MDT is needed.

The book An Early Start For Your Child With Autism may really help with strategies even if he is not on the spectrum since socialisation and communication skills are way up there on the list of things they’re working on. I found it really helpful to a) work on those things with them and b) reading the material may confirm for you that it’s unlikely to be ASD or vice versa (when I got the book I was sure one of my boys was autistic but reading the book was like reading an exact description of his twin - they present very differently but are both on the spectrum).

I’d also add - if your child’s physical disabilities involve a sensory issue (visual impairment and / or hearing impairment) then early ASD diagnosis becomes even more unlikely and more difficult because those conditions themselves can cause the difficulties usually associated with ASD. It’s quite a minefield. For example, before DT2 was diagnosed with ASD his ophthalmologist ordered an MRI scan of his brain.

The scan showed a specific type of brain damage. The ophthalmologist said it wasn’t relevant, as did his paediatrician and endocrinologist - but what they didn’t specify was they meant it wasn’t relevant to the issues they were seeing him for, not that it wasn’t relevant overall and they really don’t communicate with each other.

You're building really great foundations for his confidence and esteem. As he gets older, you will see him reap the benefits of your love and patience.

You sound like a bloody marvellous parent.

Have you had help from portage? They’d be fantastic in your situation we did, but he doesn't qualify now he's in nursery so not had them for over a year now

if your child’s physical disabilities involve a sensory issue no, he's on o2 and is tube fed

Thank you Cobbler and everyone else for your supportive and helpful words

Oh OP I could’ve written your post 12 years ago. My DS didn’t like joining in things, in fact he was probably worse - there’s no way he would’ve walked down an aisle as a pageboy. We used to take him to a football club every week and he’d stand on the side and cry.

But he’s very different now, in fact he’s been player of the year for the last few years! He still will only join in with things on his own terms, e.g. he won’t go to parties where there’s alcohol (possibly no bad thing) and he’s reluctant to do new things unless his mates are going too.

I think the important thing to realise is that kids are all different. Please don’t compare your DS with others. He sounds lovely and sensitive. Don’t worry about him missing out on wonderful experiences, he’ll have his own wonderful experiences in his own way. Keep doing the things he enjoys, encourage him to branch out gradually with your support and guidance, and he’ll expand what he’s into.

It’s a good sign that he plays with others at nursery. And also great that you’re so reassuring and encouraging. I have to admit to my shame that I’ve told my son off for not joining in and feel terrible about it. It was pointless anyway. He just did it when he was ready, as I’m sure yours will too.

Thank you x