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Struggling for diagnosis and struggling to cope(11 Posts)
I am a dad who is struggling to cope with my daughter. She is currently going through the diagnosis process for ASD/Aspergers/ADHD and I am really struggling to cope.
I don't know what I am hoping to achieve with this post. Maybe some guidance, maybe some solidarity, maybe some sympathy.
Its quite long and brutally honest so please be gentle with me if you read anything controversial.
My youngest daughter is 7 and she is a completely different child to the social butterfly, outgoing little girl we had 18 months ago.
She used to be so outgoing and confident.
We moved from the South to the North in September 2016 and things were going great and we had no idea there was anything untoward. Her behaviour at home was “normal” although she was always strong willed and happy in her own company.
The first time we had any idea that anything was wrong was one sole occasion in October 2017 where I got a call from school asking us to come and get her as she had lost her temper and had proceeded to rip a school display up and lose her shit.
That was dealt with, quite harshly by the school in that she was excluded from a school film night and made to wear uniform on a mufti day (she was only 4 at the time).
There were no other problems. She got good reports and seemed to be exceeding in some things.
Everything ticked along until December 2018 where we got a phone call out of the blue from school asking for her to be picked up as she was trashing a classroom and they had to evacuate the other children to keep them safe.
We collected her and didn’t think much more of it apart from her having an out-of-character bad day.
However as Christmas 2018 approached we started to get calls from the school on a near daily basis for poor and disruptive behaviour with violent and anti social outbursts and we were at a loss to explain it.
At that point Autism or ASD did not enter my head at all.
We got through Christmas and hoped that it was just out of character behaviour but by March/April 2019 we were getting calls from the school regularly and were having to leave work to collect her.
At one point she'd threatened another child with scissors.
Her usual behaviour was to be violent and destroy things and they would continually have to evacuate the class to keep the other kids safe from her.
We had a meeting in April 2019 where the school said that she was at risk of exclusion (by this point she was 6). We tried really hard at home. I went back on anti depressants (which I had been off for some time) and almost as soon as I went back on it seemed that for a while life was a bit better, so I naturally blamed myself reasoning that I was obviously depressed and had not realised how my behaviour had impacted on the family (although to be honest I hadn't been feeling depressed, just a bit ratty) however her behaviour soon deteriorated again.
By this point I was trying to get help from CAMHS and social services and the GP to no avail. The GP said school had to refer to CAMHS, the school said the GP needed to refer to CAMHS and the GP refused to see us.
By the start of April 2019 we had an agreed behaviour plan in place with school and she was excluded from attending after school club for a short time due to kicking off and trashing it one evening.
We tried to explain to her that if she couldn’t go to kids club my wife would have to leave her job to look after her but she didn’t understand.
By this point each bedtime was taking about 2 hours and she was having huge meltdowns. We were getting no help and the school just seemed to be dealing with her as a naughty child. We were hitting a brick wall and had no idea or advice as to how to cope with her.
It was getting to the stage where we would sit outside the bedroom with our backs against the door to prevent her coming out and she would just trash her room. It would usually result in everyone in the house in tears and me and her mum having a domestic (non violent of course). We had no other ideas how to deal with her and our poor eldest daughter was having to cope with this.
Things continued down this course for some time. We had further meetings at school and eventually we were made subject to an Early Health Care Plan for her. Eventually we managed to get a family support social worker from the Multi Agency Team who was very helpful.
Socially she was no longer the happy strong willed child she used to be. She was withdrawn and prone to outbursts and talking like a baby and having huge meltdowns which would take hours to control.
By the time she restarted school in September 2019 her behaviour had deteriorated so poorly that the educational psychologist recommended a part-time time-table which we agreed to.
This went on for 6 weeks but the school were not supportive at all and in fact were actually obstructive.
After those six weeks it was agreed that she be made subject of a TMP (Taylor Made Program) so she spent half the day at achool and the other half at a pupil referral unit (at the age of 6!). It still felt that the school were treating her as little more than a naughty child. During this time CAMHS said they could not take her on as she was not at crisis point.
We got through Christmas and she rejoined full time education and was doing really well however within the last three weeks (pre-corona virus) she has deteriorated again and we can’t do anything with her.
She had been getting sent home from school a lot, no one can say anything to her as she just kicks off at the slightest thing and everybody, us, her sister and her teachers spend all the time treading on egg shells as no one knows how she is going to react. For example the other day she wanted to do some maths. She breezed through he questions I set her so I gave her a slightly harder one. She got it wrong and it triggered a huge melt down.
The school have just put a new head in place who is so much more supportive and had only been contacting bus when absolutely necessary rather than at the drop of a hat like the old head but its still so hard.
That’s about it as far as her behaviour is at present. Shee appears to have an emotional age of about 4 as opposed to 7.
I fear for her as she gets older and it is having a huge impact on us as a family.
I struggle to keep my temper at the best of times. My wife and I argue and barely get any time to ourselves anymore because every evening is a battle to get her to sleep then we just collapse into bed ourselves. There is hardly any intimacy between us. Our eldest is confused as she doesn’t have the sister she used to get on so well with.
Quite honestly if I know life was going to be this hard I wouldn't have had a second child.
I am in the police and I spend every shift hoping beyond hope for a late incident to come in to tie me up so I don't have to go home as I can't cope with her.
I know how awful that sounds and I feel so guilty for having those thoughts.
I feel frustrated and resentful and am utterly exhausted.
I try so hard but am at my wits end.
Is there a light at the end of the tunnel as I just can't see one?
Due to Corona Virus everything has understandably stopped so her diagnosis and potential treatment had been delayed.
I'm sorry that your dd and your family have had such a hard time of it. Has she been better since she has been away from school?
When my ds is at his worst the thing that keeps me calm and going is knowing that it is all fuelled by an anxiety that he has no control over.
There are various things you can try while waiting for a diagnosis.
Doing an ABC (antecedent, behaviour, consequence) chart to see what is triggering her behaviours, then try to avoid the trigger. It can also make you think more about how you have reacted to a situation and whether the reaction has made things better or worse.
Look at whether she has sensory processing issues (often co morbid with ASD) and if you can reduce sensory overload. The 'out of synch child' is a good place to start.
Using visual supports/timetables/visual timers or countdowns to give her time to adjust to new activities.
It is very hard to not take the behaviour personally but the calmer and less reactive you can be the better. It's worth looking at yvonnenewbold.com as she does videos about how to reduce violent and challenging behaviour.
I didn't want to read and run we have 5 children crazy I know! Our second youngest child is now 5 with "problems" he's got a diagnosis of global developmental delay (GDD) they don't really now what's wrong with him. His small for his age, speaks very little words but does understand most things, isn't toilet trained, doesn't sleep much, had a temper on him ect. We are waiting on other diagnoses but sure to what is going on it's been put on hold.
Like you my husband struggles a lot, he gets angry with the other children and shouts at them. He says he doesn't enjoy being at home but then it doesn't help he shouts at the children. He really struggle to help with our 5 year old to the point I'm left with doing every for him.
Have you tried spending some one on one with her? Even just for half a hour a day. Plan before the day and stick with it.... Sorry it not much help but you aren't alone. Well done for coming on here and opening up
Just to reassure you that it can get better.
My ds's were very similar in juniors and ds1 managed to get himself permanently excluded. Now at seventeen he has not had a meltdown for years and copes admirably at a mainstream sixth form college. What made the difference for him was getting good support at school - first a primary EBD school and then a specialist school for children with an ASC. We also learnt at home that the behaviour was fundamentally down to anxiety so treating the incidents as panic attacks worked a lot better than punishments to reduce them. Yes, he is still autistic but someone with autism who copes with the world and has a bright future rather than a child who could not.
Have a look at this leaflet, see if any of it applies to your daughter. It's about Sensory Processing and so many autistic people have it that it's now included as part of the diagnostics.
As you're a Police Officer, you may be able to access some info from this organisation. It's for autistic officers, but some of them will have autistic children so you may find some support, suggestions and pointers there too. www.npaa.org.uk
As for coping with her, learn about autism, learn how it presents in girls and women as it can be very different to male presentation. There are loads of YouTube videos by autistic women and mothers.
She's not "behaving badly" if she has autism, she's overwhelmed and cannot process what's required of her. again, learn as much as you can, forget all the standard parenting techniques and learn how to parent an autistic girl.
You may also find a change of school helps, the one she's at has been
utterly useless lax in not suggesting interventions then investigations way before now.
Thanks for all the help and advice. To be fair news that the school had a new head teacher things are much much better.
However I have just come home to a trashed house and her in full melt down. Trying really hard to be calm but buying seems to work.
Just been bitten and punched and kicked. She has thrown chairs everywhere and tried to hit us with the TV feeble control.
I will keep trying everything with her as I love her dearly.
This is so hard.
Thanks for your help.
The Explosive Child is an often recommended book and worth a read.
I’d also recommend the National autistic society book Autism: understanding and managing anger. This is it on Amazon but you may be able to find it elsewhere cheaper. It’s quite an accessible read:
She is struggling with something, possibly many things. As PP said, you will have to learn new ways to deal with her, you cannot parent her as you would a typical child. Pre Corona, was she actually on the pathway to assessment?
Things are very unsettled right now and many adults are not coping well, it must be very confusing and worrying for young children. How is your wife coping with her in the day?
What does she like to do? What activities calm her down?
It sounds very difficult at the moment
Thanks for your reply.
Am in the process of ordering some of the recommended books and have looked at the National Police Autism Association.
My force has its own local autism group which I will be contacting when I get back to work In a couple of days.
My wife is cong OK. Much better than me. She is a very caring person and has a much longer fuse than me.
She is finding it all exhausting though and we have more or less given up any home schooling for the moment as its just not with it as it triggers huge meltdowns.
My daughter enjoys craft, art and cross stitching (which her mum helps with) as well as baking so we try to get her involved in things like that which does help to a point but she loses focus quickly if things aren't perfect and loses interest halfway through things.
We like to get out as much as we can as we are lucky enough to live near the Peak District but we cavy do that at present due to Corona. We take them to local woods and stuff when we can.
Thanks for your support.
I shouldn't worry about the home-schooling for now, my youngest has struggled massively since the whole Corona virus thing kicked off and to be honest I'm lucky if I manage 10 minutes of schoolwork a day.
Concentrate on the good things that she enjoys, don't push her too hard to do things that will set her (or you) off, as that's not going to end well for either of you. Both my DH and I did an NVR parenting course which is interesting as among other things, you do random acts of kindness, expecting nothing in return (no, not even a thank you) and reconciliation gestures where things have gone massively wrong, and you do something nice for the child, even if it's the last thing you want to do (I normally end up making a hot chocolate). It seems completely bizarre, but does have some merit to it. (Obviously there's more to it than that as it was a 13 week course!)
Sensory issues can have a huge impact without realising it, and it may be possible that your daughter needs a safe place to go to that she can just chill out in (my daughter has made a den in her bunk bed with blankets everywhere).
Your daughter will be picking up on the additional stress and worry that both you and your wife are feeling, so it might also be a good idea to talk to your daughter about how it's affecting you too.
Wishing you all the best and hoping everything improves for your family soon.
Possibly a period of unschooling will be beneficial at this time.
Really patience is key and something you have to try and work at. As is often said, ‘my child isn’t giving me a hard time, my child is having a hard time’. It’s not always possible, obviously, but it has to be your aim.
As a PP said, using an ABC chart might help identify her triggers so that they can be avoided or managed better.
Another thing to consider is how your dd pushes your buttons and why it triggers a certain response in you. Psychologists believe that how we respond has roots in our own childhood. There’s a book called Why your kids push your buttons and what you can do about it.
I think it’s really worth exploring and I have definitely identified a few issues in my own past.