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First GP appointment

6 replies

twentytwotoo · 02/02/2022 10:12

Sorry this ended up being long. I'm just full of doubts at the moment and don't know what to do.

After many years of struggles with my challenging 9 year old DD, I finally broke the other day and called the Dr.

I’ve suspected something wasn’t quite right for years, but there’s always been something that’s contradicted the lists of symptoms for ADHD, Autism or ODD so I’ve shrugged it off as her just being a difficult child or put it down to my crap parenting.

Things got a lot worse during the first lockdown, and seem to be now worsening by the week. I’m worried that things are going to be really tough for her (and us!) as she gets older and my last hope is that if there was a diagnosis of something it might help people to be more understanding and supportive of her and might give us some tactics for making life run smoother for all of us? Also I’d just love a reason for her behaviour other than she’s just a nasty child.

So we have GP appointment next week with a view to getting a referral to CAMHS. I’m not optimistic that anything will come of it to be honest. I expect to get shrugged off, or even if we do get a referral I expect it will take years. But anyway, I’m looking for some advice about what I should actually say and perhaps some clue what to expect. Also reassurance that there is actually something wrong here and that I’m right to try to seek help?

Our main issues are her angry outbursts and defiance and refusal to cooperate with things she doesn’t want to do.

After reading lots I suspect ADHD is the most likely, but I don’t know, I’m full of constant doubt about everything to be honest.

Our problems start every single day with getting her out of bed. I have to give her many warnings to get out of bed and get dressed before I sometimes end up having to remove her duvet completely.

Despite increasingly early bedtimes, (she doesn’t fall asleep easily and will find something to do be it drawing, or playing – taking away her toys doesn’t really help, I removed her bedside light a few weeks ago in desperation to get her to fall asleep, she’ll lie awake singing or talking to herself) she’s usually grumpy in the morning and never wants to eat breakfast anymore (though usually has a massive appetite to the extent of stealing/hiding food – she’s overweight) Sometimes it’s a battle to get her to let me do her hair, sometimes she has a meltdown because her clothes aren’t ‘right’. On days when she’s up ready without too much fuss (we do get up earlier to allow extra time just for her) then the mornings will usually run ok after that, but at least half of the week she won’t get out of bed and I end up leaving without her to drop her brother off (he starts nursery earlier, we live five minutes away and time allows me to get to nursery and back home in time to take her separately)

She’s always in a terrible, angry mood when this happens, but if her brother ends up running late he becomes unsettled by the mass of people we have to push past so I refuse to make him suffer because of her difficultness.

There’s been incidents at home of her hurting her siblings, usually her younger brother.
She gets very angry and lashes out. The other week she trapped his finger badly in a drawer. Although the drawer incident wasn’t intentional, the rage that caused it is a common problem.

She generally has a very easy life, allowed far too much screen time, free access to things she likes such as crafts, no chores and very little expectations really. Hanging up her school uniform, putting clothes in laundry basket, bringing plates through after meals and that’s about it. On the rare occasion I ask her to help with tidying her room or laundry she will usually flatly refuse. If I ask her to do anything she doesn’t want to do, such as school work, going places, tidying up, having a bath, going to bed, stop arguing with her siblings or yelling at her computer Etc it will often result in anger, screaming, shouting “I hate you, you’re horrible!” Etc. When she’s happy in an activity she is fine and often quite pleasant (though she gets easily frustrated and her emotional state can flip in an instant)

An interesting thing to note is that although she has these sudden angry or emotional outbursts that are way exaggerated for the circumstances, she will often cool down and be completely back to normal like nothing happened within a relatively short space of time – no lasting feelings of hurt or rage or resentment.

One of our problems, which I’ve written about before, is her love of making awful concoctions or just doing really randomly weird stuff, which people have suggested is a sensory thing. She has access to craft stuff and messy play, but she loves to do weird stuff in secret, usually after bedtime, eg she’ll take cosmetics, glue, glitter, bits of paper and who knows what and mix them up and do weird stuff. She’ll steal knives and nail clippers, cut her toe nails really short, dig up glue sticks, colour all her fingers and toes in marker pens, the other day after saying goodnight she covered a comb in body wash and combed it through her hair. She currently has six neat clumps of chewed chewing gum stuck to her bedroom wall with the colours of the rainbow written next to them.

She’s defaced most of her toys. She loves to customise her dolls but this usually means they’ve got half of their limbs cut off, face coloured in black and hair cut off. She breaks a lot of her toys and steals her siblings’. The stealing is becoming more of a concern. We don’t really have anything of value that she takes but she does take her siblings toys, or my craft (and work) things; things she shouldn’t have that perhaps need to be on a higher shelf (though she’d find a way) like craft knives and supplies. It seems she has no regard for other people.

She picks scabs constantly, just will not let them heal, I’m surprised she isn’t covered in scars. Her toe nails are a mess from the constant over cutting.
She sometimes hits herself in the head when angry. She’s referred to her brain as “stupid” and said it makes her do things.

Her go-to response when I tell her off for something is “it’s not my fault” She never accepts she’s at fault, in fact, and always blames someone or something else.

She doesn’t care about household rules and seems to think that if she can get away with things she will try. We don’t have a strict house, honestly it’s a madhouse with three kids and they’re mostly free to do what they want, though I do ask that they tidy up afterward (usually fails). One rule is no food in the living room, (May seem petty but after finally doling up our ex-rented house, we want one nice room without food crumbs or paint smudges and filth) she regularly breaks this rule when she thinks no one is watching. We have a large play room with comfy couch where they’re free to eat, play, watch shows Etc, but she’ll choose to sneak snacks under a blanket in the living room when we’re elsewhere.

She often comes home from school with school’s supplies stashed in her book bag.
She’s also started to have a stash of wrist bands that they use for school dinners, she says she ‘forgets’ to hand these back in. Although slightly strange I do believe this, as her memory isn’t great. She does lose things quite a lot- reading record (whole other issue!), shoes Etc.

She often doesn’t listen. Clearly doesn’t pay attention at all when I am talking to her. Sometimes it’s selective hearing, other times she’s just not hearing me.
She’s rude, her tone of voice is horrible, and she’ll randomly say “I don’t care” when I’m talking to her. It is often extremely frustrating to me how rude she is and her refusal to listen when I am trying to talk to her. She’ll cover her ears with her hands when I am talking and say “blah blah blah I’m not listening”. I find it really hard to deal with this level of rudeness which honestly escalades the problem I know. But at least some of the time she doesn’t seem to be aware that she is being very rude, but no one at school has told me she’s rude so I suspect she does understand social expectations more than she demonstrates at home and is able to be polite. Sometimes she’s just painfully honest. There are a few social things that stand out, like not seeming to realise you should say “goodbye” when your friend leaves Etc/walking off and doing something else when her friend is over playing. She only really has one friend, who strangely really likes her even though there have been quite a few conflicts with him at school. She doesn’t have many friends but other than a few small social issues there’s not enough there for me to think it could be Autism? She does have big problems communicating when something is upsetting her, though; she’ll just angrily scowl or grunt at us when she clearly has a problem, it’s been this way since nursery. And she does not tell teachers when there’s a problem at school, which I think has made things worse for her as she’ll retaliate if someone’s bothering her but never alert the teacher that there was a problem to begin with.

At school she’s nowhere near as bad as she is at home. Her school reports and parents evenings have consistently said that she’s bright and capable but doesn’t put in as much effort as she is able. She does well but could do better. She doesn’t concentrate well and distracts others. There have been incidents of her hurting other child. Her last report was especially upsetting with regard to being unkind to her classmates, and her behaviour had the ‘must improve’ box ticked.
I was actually quite surprised by this, as other than one incident this year the teacher hadn’t mentioned it and it seems like we ought to have been called in if things were so bad. Which leads me to think that she’s not that bad at school? And this, I think, will actually be our biggest hurdle in getting help or even acknowledgement that things aren’t quite right? The biggest difference is probably the lack out angry outbursts at school which is probably our biggest problem at home. I know there needs to be a problem in more than one setting for them to consider there’s an actual problem so I’m worried unless school report issues then we’re not going to be taken seriously. Maybe the only issue is just that she’s a challenging, explosive child and that I’m failing her?

There was one incident the other week when I couldn’t get her to go into school. I had to talk to the teacher and eventually had to leave her crying. Nothing like that has ever happened before and the staff seemed genuinely surprised and said “this isn’t like you” which honestly stung as it was clear these outburst don’t happen at school so maybe it’s just me?

OP posts:
User1234567891011121314 · 03/02/2022 12:05

Omg I just wrote something similar on a new thread. I am about to make the doctors phone call myself. I'm beside myself, just need some help!

xxlostxx · 03/02/2022 18:08

Your dd sounds very similar to mine who got a diagnosis of ASD at the end of primary school. School couldn't see any problems but this is not unusual for children who learn to mask and is common with girls.

You do not need school to be on board to get the ball rolling for an assessment. Make an appointment with your GP, list all the behaviours that you have here and ask for a referral to CAMHS.

My dd at 9 was very much in to making potions/slimes too with whatever she could get her hands on, glue mixed with nail varnish, bags of flour and shampoo. It is sensory seeking and I noticed that it correlated with high stress times with my dd. Had many clothes and furnishing ruined!
She couldn't see the problem, would either point blank deny it or just go in to a rage when confronted about it. (I'd find bowls of disgusting congealed mixes under her bed.) The rudeness is very hard, my dd by the age of 9 knew plenty of swear words and would think nothing of hurling them my way.
Don't waste any more time OP , you'll be on a long waiting list with Camhs and if your dd were to get a diagnosis it would be better if it were in place before secondary school.

xxlostxx · 03/02/2022 18:16

Sorry, just saw that you already have appointment for GP next week. They will want to know how long these difficulties have been, asd/autism are life long, they will want to rule out that a recent trauma (eg parental divorce, bereavements, illness etc) are not the cause of the behaviour.
They will also ask about your other children and possibly suggest you go on a parenting course Angry. Politely decline and insist you want the referral. Camhs were great when I finally got to see them.

LightTripper · 04/02/2022 12:25

While you're waiting for a referral, it would be worth looking at the PDA Society website (PDA is a presentation of autism and while I don't love the name the parenting approaches I suspect you will find useful. My DD's presentation is only marginally PDA but I still find the parenting approaches useful to manage her anxiety).
www.pdasociety.org.uk/

Probably hold off on mentioning PDA to your GP as most will not have heard of it and it isn't an official diagnosis - but just something to explore while you wait for a referral.

Kristy Forbes is also excellent on PDA. I recommend watching some of her videos and seeing if you think it fits/if those approaches are worth a try (Kristy and at least some of her children have a PDA presentation of autism and she also has ADHD - so she has experience both as parent and PDAer herself). She has some great videos on her YouTube channel (linked below).

www.kristyforbes.com.au/
www.youtube.com/c/kristyforbes

twentytwotoo · 09/02/2022 15:55

Thanks for the responses.

We had the GP appointment today. It was less than pointless.

I think I managed to explain our issues quite well, he seemed alarmed by what I was saying, even asked a couple of questions, but mostly seemed disinterested and then ended with "and how do you want us to help you?" I repeated that I was hoping to get a referral for a mental health assessment. He said "we don't do that here" and that I have to contact the school about that. That it's possibly just behavioural issues. I told him that I'd been informed the GP was the first step for a referral, but nope, he was like a broken record. I have to speak to school apparently. He didn't even want to speak to my daughter.

Even the receptionist on the phone told me that the Dr would need to speak to my daughter, and when I first asked how we go about getting a mental health referral she said we'd need to make a Gp appointment, no mention of school. I knew it would help if school were on board but at worst I was expecting a long wait, not utter dismissal and a pointless waste of time.

Now I feel even more like I'm just failing my daughter.

I know people have mentioned self referring but I can't find details of how to go about that.
OH says I should complain about the GP but is there any point?
Is it worth going private?

OP posts:
LightTripper · 10/02/2022 10:00

I'm sorry he was so unhelpful. How frustrating.

I am not an expert, but while waiting for other (possibly better informed!) answers I would try calling your local CAMHS, explain your daughter needs a MH assessment/you suspect autism, and see what they say the pathway is.

This varies by area, but every area has to have a "Local Offer" and some have good clear information on diagnostic pathways online if you want to research first. If you google your local authority name and "Local Offer" you should get to a page with all sorts of SEND information, and if you dig around you should find some information on autism assessment pathways.

For example this is my local offer page: www.hackneylocaloffer.co.uk/kb5/hackney/localoffer/home.page
And the assessment pathway: (in my local area it seems to suggest that for age 5+ the school SENCO would refer to a social communication assessment clinic) www.hackneylocaloffer.co.uk/kb5/hackney/localoffer/advice.page?id=fLQ-DCX9nyc

But it will be different in every area.

Do you think your school SENCO will make the referral? If not, maybe call CAMHS direct and ask them for alternative routes - but hopefully school will be aware that a lot of autistic kids do fine at school and then explode at home from the effort of masking all day.

Here are a few resources you could consider sharing with school if they seem reluctant out of ignorance rather than intransigence, to show that this is a common and recognised problem for autistic kids:
blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/
www.autism.org.uk/advice-and-guidance/topics/education/different-behaviour-between-school-and-home

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