Published on 12, July, 2020
Hi, I am new here and looking for advice about my 7 year old son (7 in June).
I have felt for a long time that something isn't quite right, he was a very difficult baby, cried lots, hard to settle, difficult withe feeding and slept very little. He is our second (and last) child and our first born was quite a settled baby so kept thinking that we had been spoiled with her and that it was just different second time round.
As he grew he never seemed to quite meet his milestones at the appropriate age. He was late to walk, talk, potty train etc but always got there eventually. He continued to be difficult, very unsettled and as he got to 18 months he had extreme tantrums which seemed more severe and more frequent than other children of the same age. Again we thought he was just strong willed etc and would grow out of it. However they continued. When he started nursery we noticed that his interests were unusual, becoming obsessive over batteries, soap and recycling items but again't put it down to just him and thought he'd grow out of it.
All of this continued. He's 7 now and still has frequent tantrums or meltdowns in various situations, especially in shops, theme parks and other days out, when visiting, especially when there are lots of people in the house. Even at home he is often unsettled, he is aggressive towards his sister verbally ando physically and often shouts at us and other family members too. He often refuses to do as he is asked, or will do things his way. If I ask him to get dressed he will (often after delaying it) but will put his top on backwards, or will refuse to wear socks, it's like everything has to be on his terms. He will happily play with other children (although this is quite a recent thing) but again only if he's in charge of the game, and if they refuse he becomes aggressive, or if he's at school when this happens he becomes upset that they are no longer his friend.
At school he is described as having perfect behaviour and school have no concerns other than he isn't progressing well. They tell us that he's doing okay ( though at one point we were told his progress had stopped all together) but according to his report, he is well below average in everything other than his reading, even for effort he is below average. He hates going to school, he complains every morning that he hates it yet when he's there he's fine.
At home he just seems full of something, I know that sounds strange but it's the only way I can describe him. Like he's full of energy or anxiety I can't work out which. He tells me he's excited, the other day he was crying because he wanted a sleepover at Nans house. He was adamant he wanted to stay on Monday night. So we arranged it and on Sunday told him he could sleep over the following night just as he'd wanted. He went into complete meltdown saying that he wanted a sleepover, I explained that he was having one and he replied I want one tonight. I left him for a while then went back and asked why he was crying when he was having exactly what he wanted and he said I don't know why I just feel excited inside.
He's under the educational psychologist for 18 months who has just moved the referral onto the CCAT asking them to assess him too. But he keeps saying that he's only done this because things haven't improved, he doesn't really think there's cause for concern and he doesn't really fit any type of disorder such as asd or ADHD.
I'm so sorry I've written an essay!! I just don't know where to turn next. I have a feeling that when he is assessed nothing will be picked up and we'll be back to square one. I'm in turmoil, part of me wants to treat him as though he has asd or something else but when experts are saying there's probably nothing wrong I can't help but see his behaviour as him being awkward and nasty. Deep down I do think something is going on, he is such a lovely little boy, his behaviour is very difficult to manage though.
Hi Ellie's Mum & Dad,
That's a lot of money. But when it comes to your child, you only want what is best.
The issues we have with our son occur at home only. In public places, social situations and at school his behaviour is impeccable.
We have been praised countless times for how well he behaves in social situations, but that is down to the fact he is in adult company, and part of PDA, which we believe he has, is that he prefers adult company and can communicate better with adults.
When he has had a bad day at school, or somethng has upset him, he never shows it until he is safely home, and then meltdown commences. These can last 30 mins to 3 hours, though 30 mins is a rare occasion. He trashes his room, screams abuse at my husband and I, throws his bedding off, he becomes like Jekyll & Hyde. CAMHS told us to walk away from him & give him space when he starts this, but he follows you, hurling abuse continually. It's not as easy to deal with as perhaps CAMHS would suggest.
I am so glad I was referred to this website from CAMHS for support while waiting on our Clinician appointment, I feel I am not alone.
Hi again,
Apologies for the typos in my last reply, I was typing like a maniac!
The things you have said about school sound very familiar. Our son is a model pupil, the school were horrified when it was first brought to their attention about the issues we are having at home, as at school, our son is perfectly behaved.
He is struggling with maths, but literacy he is great at. He is also very easily distracted in class.
We have also filmed meltdowns, it is heartbreaking watching your child so out of control.
One thing we have noticed during the start of meltdowns is that our son starts to use language more suitable to a 3 year old. He starts to talk as if he is a toddler again.
We have started to become aware of trigger points, also if he comes home from school I can usually determine if there is trouble ahead, depending on his mood.
He only ever has these outbursts and meltdowns in our family home, although we were on holiday recently and there were 3 or 4 episodes, though again, they were only in the confines of our hotel room where my husband and I were. He never behaves like this with anyone else or in public. It upsets me that he has such high anxiety while doing everyday things, and he contains this until home and then lets rip. That in itself must be stressing him out, trying to remain calm for the public while he is breaking inside.
When he started with the "terrible 2's" at 18 months it was horrendous, looking back it has probably been since then, but we just accepted it and thought it was normal. It has never gone away, only got much much worse.
I just hope the fact I had to speak to the "Response Psychologist" the other day, will speed up ouyr Clinician appointment, as until that has been done we are no further forward and the thought of having to wait at least 7 months from that referral for an Autism assessment is not endearing.
I could cry.....but thats not helping anyone.
All sounds very familiar, not that its much comfort but we go through something very similar every day. Our Ellie does have SEN support but is described as quiet and withdrawn at school but never 'naughty'. When she comes home, around town, in the car she is nothing but naughty. I believe criteria for ASD would be the behaviour happens in two different settings. Unfortunately, it would seem in our case, the so-called professional only take in account school and home environments. Which I think is completely wrong. We are seriously thinking about going down the private route with Lorna Wing, its £2,995 that we cant afford but we are desperate and credit might be our only option. - Ellie's Dad
Your son does sound like ours Angela. It's so hard isn't it. I look at home and he is so beautiful and kind and loving, then there's that side of him he can't seem to control.
We had parents evening tonight, he's recently started junior school which is separate to his infants school. The teacher feels that there is something going on with him. His learning is very slow and she wonders if he is dyslexic. She said he has been assessed (I presume by a CCAT member) who reported back that he seems to be suppressing something and internalising things at school whilst seeming passive. The teacher told us that he is very good at looking like he's doing as he should be but they don't know what's actually going on for him. She also picked up that his eyes are everywhere at school and seems easily distracted.
I have managed to get some of his meltdown on camera, discreetly filming him on my phone in snippets. His teacher was very shocked when she saw one from yesterday saying that's a different child to the one we see at school! She also said that's normal behaviour for a 2 or 3 yr old but not normale for a 7 year old. She told me that I need to somehow get the clips to the Ed psych. She was also shocked that we don't have a CAMHS referral for him.
I feel kind of relieved that things seem to be moving but a little disappointed that we weren't aware that anyone had been to assess him and the outcome of it. I'm hoping to see the school SENCO tomorrow or Friday to discuss it further.
I feel quite emotional about it all tonight. Although I'm relieved I'm also sad that it's becoming less likely that this is just immaturity etc. I've shown a few people the videos over the past few days and have been surprised by how shocked they've been by them. I guess for us it's our normal, but when other people who have children of a similar age are so shocked by his meltdowns it brings it home that this isn't normal behaviour if that makes sense. Up until now I've hoped that he'll grow out of it etc but that hope seems to be slipping away.
Hi
Your son sounds very alike my son. He is 11.
We have recently been seen by CAMHS and are awaiting a Clinician appointment.
My son was late walking and potty training, and the "terrible 2's" started at 18 months and I don't think they ever went away.
We have looked into symptoms my son shows and we believe he may have PDA, he has all the symptoms of it, he wants to be in control, and if plans change without him knowing, this causes meltdowns. He has extremely high anxiety levels, and like your son, he is happy if things with friends are under his rules. His behaviour in school is excellent though he is struggling with maths.
We don't have nay issues with his behaviour, tantrums or meltdowns outwith the house, he controls his anxirty to the poibt he is close to breakdown until we ge home, and then meltdown commences, where he will become a Jekyll and Hyde character, shouting abuse and his Dad and I. How he hates us, wants to live with another family, I'm a crap Mum, his Dad is horrible, we are selfish...." The list goes on. VERY hurtful having your 11 year old who is otherwise a loving, gentle and senstive soul shout these nasty horrible things to you. Meltdowns can last 30 mins to 3 hours.
Simple things like getting dressed take him an age, he hates being asked to do things like get dressed, shower etc, as he wants to do it in his own time. That is what PDA is all about.
We also did the Parenting class, but it made things worse for us.
I feel your pain.
Angela
My son too is 7 and was recently diagnosed. My husband and felt as though something wasn't quite right. The school wouldn't listen to us and kept telling us irpt was something he would grow out of. If in your heart you feel something isn't right you have to keep fighting for your son no matter what eventually someone will listen to you. You are not alone
Thank you both for your replies. Sorry your nephew is having similar difficulties Ninjamouse, hope your sister in law is able to get something sorted.
Thank you for the recommendation recombinantsocks I'll have a look see if I can find it.
We've questions ourselves over and over and were reluctant to ask for referral in the hope that he would grow out of it or that things would improve. I couldn't take much more one day and booked a gp appointment who advised me to push at school for an inclusion support referral (as school had already expressed concern regarding his lack of progress but told me it wasnt their job to refer it was gp!).
We came to the conclusion that we've tried the telling off, naughty step, thinking chair, time in, losing it with him and really shouting, talking to him etc etc and none of it has worked. Our 12 yr old daughter had the same parenting (albeit of course slightly different as she is the oldest) and is sensible, achieving very highly at school, of course cheeky etc sometimes but on the whole well balanced (apart from being fed up of her brother attacking her). We've wondered if because of this we compare the two and he's just different to her, I feel like we've explored all possibilities! But it always comes back to the same thing. He seems different to his peers in many ways. He's not really into anything (other than collecting soap and placing buckets of water around the house as hand washing stations as he calls them!), the firm boundaries we set don't seem to make things any better. I did a parenting course at school a while back and the only thing that has worked from that is us trying to understand the behaviour rather than classing it as naughty, though as I mentioned before thats difficult sometimes when we're in limbo over whether there is something going on or if he is just naughty. I'm kind of feeling like I need to treat his outbursts etc as something that he can't control or I'm failing him as a parent, yet I'm scared to do this because if it just him wanting his own way etc then I feel like I'm failing him because I'm allowing him to use that behaviour to get what he wants if that makes sense.
I'll definitely watch it and see if it shed any light. Thank you
ASD is a distinct possibility in my opinion. His lack of progress in school means that some intervention is appropriate so he should be assessed by a professional that understands autism.
I would recommend that you watch the Channel 4 series "born naughty?" on catch-up which followed a set of parents through the process. Half of the children just needed better parenting but half of them turned out to be autistic. As you watch more of the programs you begin to realise how difficult it is for people to work out which is which but you also see that some of them cannot be sorted out with better parenting and I guess that your child may well be in this group.
Your post sounds a lot like my nephew who is 8. My sister in law is now pushing for a referral, as the older he gets, the more he is struggling and acting out. He still models good behaviour at school though.
I would start a diary of all your concerns, maybe video some of his behaviour at home so that you have something to review and discuss when you get his assessment.