To ignore hints about problems ?

[Babieseverywhere]

My 8yo DS has no friends.

He has one classmate who he will play computer games with at his house but does not play with this child at school.

School say he is happy and has lots of friends at school, which is reassuring but no play dates or party invites since reception.

I have stopped trying playdates at home as DS sits on the stairs upset until guest child goes home.

So I decided to stop attempting play dates and send him to clubs which have activities instead.

I send him to an after school club which is run by the teachers. The teacher said he enjoys it. DD1 also attends this club and says her brother messes around and doesn't follow instructions. However the teachers have not reported anything, so it must be minor.

DS also goes to Cubs and a computer coding class. This is where the AIBU bit comes in. Both clubs have mentioned that he is enthusiastic and runs around a lot. They ask if he is doing ok at school/home.

AIBU to just nod along and say everything is fine (which I have done several times now) when I am pretty sure they are hinting he is causing some level of problem because I am terrified they will stop him going and he will be gutted ?

This is a long shot, but somethings about your post resonated with me as far as my own DD goes, especially fidgeting if sitting at a computer screen & not wanting friends around at home. When younger she would leave them to play in her room & go off & hide too.

She has 2 diagnosis that are linked & either could be relevant as symptoms can cross over a bit.

She was first diagnosed with Ehlers Danlos Hypermobility, aka Joint Hypermobility Syndrome - Google "The Beighton Score" if he can do some of that, then get a referral to a good EDS aware Rheumatologist.

Later as things got worse, we realised more was going on & with having Pernicious Anaemia in the family, pushed for testing for that long story short, she was eventually treat with B12 injections which made a huge difference to her health, including strengthening her hypermobile joints.

Symptoms of both can include Sensory Processing Disorder, discomfort or pain in joints etc, plus other symptoms that can make sitting still uncomfortable. I have it too & cant sit at our main computer as the angle I have to hold my head at would cause me problems affecting my head & neck & trigger a kind of painless migraine that sends me a bit loopy - pretty hard to explain for an adult, never mind a kid

Symptoms also wax & wayne & can mimic ASD in some ways, my DD has ASD traits at times, but not always. She also struggles with certain pitches of noise which can come on suddenly, affects concentration & is really distressing for her

He was assessed over many months, I am sure if anything was very wrong it would of been picked up. The senior ASD consultant explained that masking doesn't happen in the way I thought it did, all issues have to be seen in two settings, home and school to ensure accuracy in assessments. Luckily DS is happy and has loads of friends at school according to the teachers.

I accept that he is a bit quirky at times, like closing his eyes whilst walking behind me whilst walking down the street, he walked into a railing doing that today. It was because he didn't want to go to the Remembrance Parade so was being silly, sitting on the floor before the walk and being sulky and he hated the Salvation Army drums, (loud noises hurt his ears). All he wants to do at weekends is be on his computer. Once we got walking and the band was further way, everything else went smoothly.

I do worried that he still is very frightened to be on his own anywhere, anytime. His sister who he shares a room with had a sleepover at a friend at the weekend. He went to his bed with light on and door open with his two little sisters in the next room but as soon as they fell asleep (went quiet) he got frightened. He screamed so loudly, we jumped downstairs. He ran downstairs very upset, his heart going so fast and visually upset. This is a frequent occurrence. He thinks he hears things, that he doesn't. That things are watching him and will hurt him. I am very careful about what he watches and reads to avoid further upset.

We have dreamcatchers and we do positive thoughts before sleep, think about what we want to dream about as we try and go to sleep. But 4 out of 5 times nights he ends up coming though to our bed and waking me up. I have to stay awake until he goes to sleep. I read a book overnight last week when he was feeling unwell and kept waking up !

He is due to go on a cub sleepover in a fortnight and he really wants to go. Santa will be there and he is so excited about going. I am going to have to mention his poor sleeping patterns to his cub leader aren't I ? If he is in a big room and anyone else is awake he will be fine. But it would be unfair to send him without giving her a heads up.

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I can't honestly see how he can be happy and have loads of friends at school with the behaviour you describe. It obviously isn't just at home if other settings have mentioned it. What does Camhs think you have done wrong in your parenting to give your child a sensitivity to noise, for him not to be able to sit still or tolerate friends over to play?

CAMHS just kept telling me that the way I was handling particular events with my DS was the right way to do things and if I kept parenting in the same consistent way, he would behave better for us at home and become happy to invite school friends home for playdates.

Although they were clear it was my poor parenting causing these issues, they never once said, what I am doing wrong. I find this very confusing and frustrating.

That sounds quite contradictory. So you are parenting badly but keep it up and he'll improve???
I think you at least need to speak to someone at camhs for some clarification.

After a couple of months of weekly talks to a nice CAMHS person who could offer nothing more than I said, I thanked her and asked her to close DS case.

We love him and I am sure in the long term he will be fine, just need to get him though school as happy as possible and he will find his tribe when he is older and college aged, like I did.

Talk to the national autistic society for some advice, I think there's something else going on here which needs to be resolved before he starts secondary school and puberty. It would be unfair to send him to secondary school with the issues that he suffers from atm & puberty usually makes ASD more intense in certain individuals.

www.autism.org.uk

Your Ds needs to be equipped with social communication skills to deal with the world appropriately and not left to find his own way/tribe because what if he doesn't or can't? He is a child and needs to be guided and helped through the difficulties that he is experiencing.

As the behaviour has to be observed in two settings, could you push for reassessment , with one of those occuring at his clubs rather than school.
It is very common for bright kids to be able to mask some of their symptoms while in school, but it's also completely exhausting mentally and emotionally. This is well known and I'm quite shocked it hasn't been acknowledged by the people carrying out the assessment.

OP, I don't know about anyone else but as an observer (totally impartial) it's quite frustrating to read all these posts asserting that you believe your son to be 'fine' and the issues to be down to your poor parenting, only to read in the next sentence that there is a further concerning behaviour to add to the list

Your son is clearly struggling with some social aspects. I am glad to hear that he behaved better at coding club - that doesn't rule out SN by any means, as SN children are often able to respond to clear instruction as well as NT children.

You are now saying he sits on the floor and refuses to move and he climbs into your bed 4-5 times a week because he is scared to be on his own. In the nicest possible way, these behaviours are atypical. Do YOU believe these behaviours are a result of your parenting? Does he have clear boundaries, rewards and consequences that, in an NT child, might stand a reasonable chance of working? If so, and these are not working, you probably do need to continue to pursue assessment and help for him. If not, you need to put these in place for him.

OP it sounds to me as though you parent your child very effectively and are sensitive to his needs.
You have some great strategies to share with the after school clubs- maybe the coding club could give him a quick spinning break at regular intervals to help him manage the siting still.

I eventually managed my DS behaviour as though he had ASD, even though he wasn't officially diagnosed. Ask school to do the same- say 'he responds better if you do X,y,z. Try it and see'.

I understand how you feel about the assessment route- experts have made the assessment therefore no further investigation is needed. I would say, however, that these things express themselves differently at different ages, and that the assessment process is not perfect. Perhaps in the future you could think about it again, especially as other settings are reporting problems too?

Secondary schools are sometimes receptive to giving children extra support for the transition, and this could be a good opportunity to raise awareness of your child's additional needs.

Triffleorbust He only sits down as a protest as to where we are. I whispered in his ear, that he had to stand up, else he would lose computer time for a week. He got up.

DS's behaviour is typical for him. All behaviour I have posted about was told to the assesser's and I was told was completely standard (within a poor parenting framework) I believe the experts and had already completed an parenting course before I seeked assessment, as I must be responsible for poor behaviour in my son.

That said I don't feel the poor sleeping and being afraid to being on his own is anything more, than being on the anxious side of worrying. He will grow up and stop worrying as much I am sure.

Behaviour at other clubs is not admissible at assessment. It had to be home and school.

So the facts that our dentist threatened to drop him from their lists due to his behaviour. That the swimming club had dropped him back a class and we're not happy with his behaviour. Doctors asked us to leave their waiting room etc. Is not relevent.

The consultant spilt it into 'behavour with mother' and 'behaviour away from mother'. He only behaves badly near me. My youngest daughter is very head strong but all my daughters behave well and have friends etc.

I know I need to stop worrying about little things which will pass in time whilst he grows up. I take comfort from knowing that he behaves better when I am not with him.

I did talk to the Austisic society several times before and during assessment. Very helpful and supportive people. However having had this concern ruled out, I would never bother a charity about a child who does not fall under their remit.

I might ring up CAMHS and ask further advice. I do need to confirm the refusal to eat on an rare occasion and verbalise of 'I don't deserve to eat, don't give me food' are simply a different tack on the now familiar 'I would rather die than do X' I have been following the same strategy of gentle calm acknowledgement and then switching subject to more positive one.

They left the referral open if I want to recontact them. I just wanted to have that link in case things escalated again. But to be honest, he negatively verbalises more and is a lot less physical, as he gets older. Thank goodness.

I'm surprised the insist the assessment must be at school, since lots of school age children don't go to school and manage to get seen in other settings.

What you are describing over and over sounds nothing like bad parenting. You've found lots of strategies to help him. That's good parenting.

I really think you need someone on your side. Who understands you're not a bad parent and don't have a naughty child.

You need a reassessment

My boss is constantly telling me I have deficiencies such as being negative. I'm not negative, I'm realistic and try to bring a solution to any problem. Previous bosses have appreciated and praised this approach. New boss is an American Pollyanna cheerleader type who hates it.
I've asked her to provide concrete examples of my negative behaviour so that I can act on it to improve. She can't give me any.
Thus I conclude that since previous bosses have not had the issue, and she can't define it, the problem may be her relationship with me rather than me

You've had no similar issues with previous children. Camhs can't give you examples. Please entertain the possibility that camhs may be wrong.

You're still doing it, OP. But okay, if you insist.

This has been the most frustrating thread i think I have read on MN!

CAMHS have left your son down, the school has let your son down and you sound like you have completely given up and accepted it being your fault!

I can only imagine can bloody hard it must be for you but really you need to keep fighting for your son. It really does sound like there are some other massive issues at play here and just ignoring it until he is college age is frankly cruel!

I read half the thread, didn't have time to get to end, but wanted to contribute as I have some experience.

My DS1 age 11 was diagnosed with ADHD Inattentive type about 18 months ago. My DS2 had ASD, he is 9 and was diagnosed at age 2.

As other posters have said your description pings up a lot of red flags. I know you have had him thoroughly assessed and none of us were in those rooms with you so we have to accept that. There are kids who may not 'fit' the current diagnoses, but show signs of behavioural dysfunction and sensory disfunction. Perhaps your son is one of these? It's possible that he's quite bright & is compensating so his scores are not low enough for a diagnosis.

As for the fidgety behaviour, I see a lot of that in my older boy. I would suggest a course of sensory integration with an OT. Not cheap, but it has really helped my boys. At the end you will be given a Sensory Diet report, which you can follow at home.

The theory is that their their nervous systems can't manage sensory input, it makes it hard to concentrate, hard to regulate their behaviour. Sensory Integration exercises help normalise their nervous systems and help them cope better. We're not talking anything crazy, usually deep pressure, swinging, often skin brushing and joint compression. After a while you'll recognise what your child responds to. Mine thrive on deep pressure, but skin brushing was a no no.

Also, perhaps it would be helpful to stop looking at the fidgeting as a 'problem' and instead see it as something he needs to help himself concentrate & regulate. Tell clubs that he needs movement breaks- especially the codeing club.

I used to come down hard on my ds1 for fidgeting, but he needs that to concentrate. He needs to jiggle and needs background input (e.g. Radio on) while he's doing homework. He may look like he's not attending or concentrating, but that may not be the case.

HTH & good luck

The fidgeting thing - I agree it can help concentration. You just need to find a way to let then fidget discreetly.
DD1 (ADHD) figets. I have bought her countless fidget toys (and chew things -she chews as well) but she'll find something like a stone she prefers fiddling with - stroking it etc. And it does help her concentrate.
You have to find something that they can play with without disrupting a lesson/group - you can get things like bracelets/rings/stretching figures/stress balls.
I think I have ADHD - I recently noticed I keep my arms crossed/sit on my hands to force myself to appear to sit still - but will be non-stop wriggling my toes in my shoes!
I also used to wear a plain ring on my middle finger (I lost it ) and I fiddled with that constantly (so much that people noticed and commented).
People have also noticed I rub my face a lot if I have to think. On my own will drum my fingers etc too.
Again as others I think you really need to go for a reassessment - you now have cubs and Code club to back you up.
Getting a diagnosis was a relief for DD1 - as she said it is not an excuse it is an explanation. If your DS is struggling (and he seems to be) he is likely to start blaming himself for being useless, stupid, lazy etc -finding things tough that others find easy. And that will damage his self confidence - might lead to MH problems as an adult. Instead of understanding that some people are less well adapted to our artificial modern life. And being different will have its advantages - he will have other strengths, he just needs to learn what they are and to play to them. (And school is the worst environment for lots of children who are different!)

It sounds from your posts as though you know camhs are wrong but have given up. You aren't with your son.at the after school club for eg when he plays up.
You have come on here asking if yabu to ignore your sons problems and have had a resounding yes! My son has diagnosed asd and has nowhere near the struggles your son has. He enjoys playdates, he knows not to hug people he doesn't know well, he can sit and do homework etc. You need answers op. If camhs can't tell you what aspects of your parenting have caused this behaviour in your son then you still don't have any. No matter how long they took assessing him.

I don't know what to do. I can't be that mother anymore. I just want to hug DS, chill and to not worry.

babies - just make an appt with the GP -maybe without DS at first and say about the assessment and what you are now being told by clubs etc. Tell them how you feel - you can't face a fight etc.
Depending on how long ago the assessment was maybe there are some things your DS should have 'grown out of' and he hasn't. I said for DD1 it was almost too easy ...because there was so much information from various places - and also a lot of lack of focus etc was put down to immaturity but by 13/14 it couldn't be.
No harm in asking for a new assessment ...

I totally empathise about the assessments. It can be so wearing especially if you're forcing your DS into situations that distress him. Considering how terribly you were treated the last time, it's completely understandable that you would hate to subject your family to that again.

I've had years of it and I still dread every one. My DS2 has a short hospital stay soon & the thoughts of it are just full me with dread. I've used the word dread twice, but it's the only word that's appropriate!

If you can afford it, please consider a private assessment. CAMHS etc definitely have biases and are not objective. A private assessment would at least confirm for once and for all. I've gone through assessments both ways- private for DS1 as I couldn't get him seen otherwise, and publicly with DS2. There's no comparison! With the private assessments I didn't feel at all judged or pitied.

The danger in "chilling" and not "worrying" about your son is that the window of opportunity to help and considerably improve his will close. Are you sure you are prepared to live with the thought that you could have done more? CAHMS won't do more for your son. Period. His case is closed and they moved on. But YOU can help your son. He needs you to fight the system for his sake.

Honestly, it breaks my heart to read your posts. You started worrying about him and somehow you decided it all be OK if you close your eyes and hope for the best. What are you afraid of? Being seen as a fool, being pushy, or actually finding out that there is something "wrong" with your son? I can tell when I finally had my child diagnosed, I felt relieved. I finally knew why he struggled and how to help him. And I felt vindicated and proud of myself for fighting on his behalf. And boy, I did I have to fight!

Of course parenting styles help. Being calm and loving, setting very firm boundaries and expectation will help your son. It helps most kids. But needs a lot more if he is to cope with the social and cognitive demands of teenagerhood. And you cannot do this alone, you may need help from OT, therapist, the school, medication, etc. Get people to do more for your son. He has the right to get treatment, and you have to be the one who makes sure he gets the help he deserves.

OP, so many of us are passionately telling you that there is more to it, because we have been there before. We understand what you are going through. It's hard, but can do this.