At a loss how to help 9 year old daughter

(15 Posts)
Blonde4281 Mon 04-Feb-19 22:31:54

My 9 year old daughter has always displayed tricky behaviour ever since a toddler. She has been prone to ‘meltdowns’ and unpredictable reactions to everyday situations. School initially was ok, but she made slow progress and often cried as soon as she stepped out of the door to come home. It would take up to an hour to get her out of the school gates, she was so distressed. She had frequent problems with soiling herself throughout year 1, which just stopped suddenly much to our relief. But by year 2, she was refusing to go into class. Year 3, was horrendous. She was withdrawn,m at school, spoke to nobody except at break and lunch, did no work, cried every day. Outside school she was having huge screaming rages, throwing furniture, grabbing knives from the drawer. We begged the school for help. She was referred to PCAMHS then on to CAMHS. A private child psychiatrist thought ADHD. Camhs have discounted this but we are waiting on a decision on autism.
She is now in year 5. She is desperately behind in her school work. Every day i battle to get her to school. She won’t get dressed, she shouts, she screams, she locks herself in the bathroom. She often says she’s ill, and I do believe the distress is making her feel ill.
The school say she shows no emotion at school, doesn’t engage, doesn’t listen, and only does work she can copy from the person next to her. My daughter says she has taught herself to withdraw so she doesn’t notice the loud noises, the people being too close, all the irritations that cause her to meltdown outside school. When she comes home, she shuts herself away in her room to calm down. At weekends she very reluctant to go out, and even somewhere she wants to go is often too much for her to process and can lead to a two hour meltdown.

School asked to see me last week. They said they feel they have failed my dd and are at a loss how to help. They have expressed a concern of how she’ll cope with secondary school, and said they honestly think it’s going to get worse, and I’ll spend every day fighting to get her there for her to learn nothing.

I really don’t know what to do. Even if asd is diagnosed, we are still in the same situation. I hate watching her struggling like this. She’s so scared of so many things - the wind, birds, bugs, all of which make daily life even harder.
I have 3 other children, a five year old boy, who just breezes through life, and two girls under two. I’m exhausted and I’m worried sick that her life is going to get progressively worse.
I’ve considered private school (simply don’t have enough money) and concerned home schooling will limit her even more to the house...

Any wisdom would be amazing x

OP’s posts: |
Singlenotsingle Mon 04-Feb-19 22:37:22

My dgs has ADHD but he doesn't behave like that. His concentration is poor , he's picky with his food and he does have the occasional meltdown but your dd's behaviour sounds extreme. More like Autism really. I hope you get a proper diagnosis and help soon.

Designerenvy Mon 04-Feb-19 22:39:59

Blonde, my son has asd. It's not unusual for girls to present later or be diagnosed later.
It definitely sounds like there's sensory issues going on and yes, it sounds like the school have let her down tbh.
There are a lot of mum's here of asd kids, who would be more knowledgeable than me of the English system ( I'm living in Ireland).
If you copy and paste this to Special Needs section you will get some good advice.
Best of luck flowers

SissySpacekAteMyHamster Mon 04-Feb-19 22:42:42

If homeschooling is an option, I would try that for now.

She seems really distressed.

Not sure what else to suggest but keep on for a diagnosis and hopefully a plan of how to make life easier for her (and hopefully you).

Sounds like a nightmare.

anniehm Mon 04-Feb-19 22:46:09

It could be asd but you are right about needing a strategy because the diagnosis is simply a bit of paper. You should be able to get a referral for family support, and formally request the school assess her and that process is starting to find the right setting for secondary school. In her teenage years dd did get offered cbt, and then a monthly session with an asd specialist nurse which was really helpful.

MumsGoneToIceland Tue 05-Feb-19 01:38:18

How long ago was she referred to Camhs? I think you and the school need to both be pushing them harder for a response to outstanding decision on autism.

Oliversmumsarmy Tue 05-Feb-19 01:51:01

I would say HE is probably the way to go if you can.

ATM she isn't learning anything it can't get any worse.

I don't know much about autism but a lot of what you describe appear to fit an ASD diagnosis.

Justagirlwholovesaboy Tue 05-Feb-19 01:55:29

Does she have a personal education plan due to her behaviour and emotional outbursts? Has she seen an educational psychologist? If not I would push for one, she obviously needs SEN support but given the local governments cut backs you will have to be prepared to fight hard for

Memom Tue 05-Feb-19 01:56:08

Have you every looked at PDA (pathological demand avoidance)? The way you describe her behaviour sounds very like my DD. By limiting 'demands' meltdowns are fewer. It's hard but makes life so much easier.

Blonde4281 Tue 05-Feb-19 13:41:55

She been seeing pcamhs and camhs for two years now. She doesn’t have any education plan in place at all. She is so quiet at school they say they have no idea she doesn’t understand. They keep saying she doesn’t listen / shuts down. But she says she listens, but it doesn’t make sense and then she forgets what they said.

I sat down with her today much to her annoyance, and insisted she do some pages in a workbook. First English then maths. The age appropriate books Aldi sell sometimes. I noticed various things about her working that one on one I could immediately address. For example she reads instructions quickly and immediately says she doesn’t understand, and throws down her pencil. I showed her how to break down the instructions, and ensure she understands in her head each small section of a sentence before moving on. Then piece it together. She’d never tried this! Whether she’d continue to do this I don’t know, but we managed to avoid a meltdown.
Once we made it past the understanding of what was expected of her, she did beautiful work, all spot on. Yes, she threw her book across the room, but I was able to let her let off steam then come back to it after a short break. Which she did, and she completed the work.
I’m so frustrated that home learning educationally is what she might need, but socially and in other ways, she needs to be in school.

OP’s posts: |
Modestandatinybitsexy Tue 05-Feb-19 13:50:38

It sounds like you can handle her brilliantly. I doubt she can get this attention in a school setting unless her CAMHS plan comes back with the requirement.

Is homeschooling an option? Would this disrupt diagnosis/education plan?

Do you have any specialist schools nearby with the resources and knowledge on how to educate children with additional needs? This website might be helpful www.specialneedsuk.org/findaschool.asp

Wish you luck in finding the best fit for your DD flowers

Crusoe Tue 05-Feb-19 20:38:39

Sounds like home ed might be a solution and will help with her anxiety and distress about school. She can’t learn until she feels relaxed and safe enough to learn.
Home ed doesn’t have to be forever, it can be a temporary stop gap until you find the right school / support.
Home ed doesn’t have to mean she is socially isolated either, there are just different ways of doing things.
My ds has ADHD and to me what you describe doesn’t sound typical of ADHD.
I hope you find a way forward. 💐

titchy Tue 05-Feb-19 20:51:39

ASD diagnosis with a view to getting an EHC plan in place. That gives you something that forces the LEA to get her a suitable education. Maybe home based with one to one tutor, maybe a special school or possibly a private school paid for by LEA. Won't be easy - post on SEN for more. But this mainstream isn't going to work by the sounds of it.

PutYourBackIntoit Tue 05-Feb-19 21:00:25

It's quite possible she has slow processing speed, causing huge frustration, maybe alongside add or not.
My dd sounds quite similar, and we all assumed asd with add. Turns out she's just a bright kid with extreme slow processing. It causes massive frustration, withdrawal in order to preserve oneself from inevitable failure. All my dd needs is done specific help.
I would actually not advice HE, but instead push for an ECHP asap to get her hours in school with a dedicated TA. You can apply for this yourself, you do not need a diagnosis. It is your child's right to have access to an education at school.

Kahu Tue 05-Feb-19 21:17:11

Don’t discount ADHD. My daughter’s story is very similar to yours - she has a diagnosis of ADHD Inattentive Type with Generalized Anxiety. She also has a lot of sensory issues which affect her behaviour in ways that sound very like your daughter.

I would pursue a testing and diagnosis - the issues will still be there and still require action and changes but at least you will have a roadmap to how to best help her IYKWIM? You said that school have acknowledged that they have failed her - can you use this to push the school to arrange for her to have some assessments through the school system rather than having to go for private assessments (sorry, not in the UK so unsure how it all works there)

As previous posters have suggested, it does sound like homeschooling is needed, at least on a temporary basis while she (and you) recalibrate and learn how to best manage her difficulties. Again, I don’t know how these things work in the UK, but perhaps school can be involved in this someway. Again, having a diagnosis and an IEP will help the school to meet her needs. I have a friend who has a daughter with very similar issues to mine - they recently enrolled her in a specialist school for children with ADHD and dyslexia where she is thriving. The school just “gets” the comorbid issues like anxiety and sensory processing disorder that affect the students’ ability to learn and mental well-being and structure everything accordingly.

I am sorry that you and your family are being so impacted. I spent years trying to understand my daughter and we all still struggle at times. Diagnosis and understanding have really helped us all. Please don’t hesitate to pm me if you need some support, links to resources etc.

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