Don’t know how to help 9 year old daughter

[Blonde4281]

I’ve copied this from the parenting section where I originally posted. Hope this is ok.

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 She was withdrawn,m at school, spoke to nobody except at break and lunch, did no work, cried every day.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

This sounds very familiar. I have a 7 year autistic girl and it sounds like autism to me.

First of all, I went through this for a much briefer time and it was unbearable so how you and her have managed I do not know. Your daughter has done amazingly to get into school at all. My heart bleeds for her. She's bloody brave.

You need to apply for an EHCP. You can do this or school can do it. You don't need a diagnosis to get the support your child needs to be in school.

I do think diagnosis is helpful though.

It's pretty disgraceful that school haven't put anything in place to help her to access education, but sadly not that surprising. With a diagnosis they might realise that they could access the autism provision in your Borough to provide advice to your child's teachers. The diagnostic team might go into school and give them pointers.

Is there any suitable special school provision in your Borough /area do you know? That's what's transformed things for us, and things (including the bee and bug terror) are so much better. Everything is so much better. Things can improve massively with the right support.

My son was diagnosed with ASD when he was almost 10 and he is now in secondary school. The primary school started an early transition process to get him used to secondary school and we had some visits so he could get used to the layout etc. I have found the secondary school much better than the primary school at providing support. I think you have coped incredibly well. What support is your daughters school currently providing?

There is a family support lady who meets my daughter at the office each morning and decides whether she needs to spend some time with her calming down, or can go straight to class.
Occasionally she will to see this lady during the school day if she seems distressed. They do ‘mindful colouring’.
Last year the teacher tried to tell me what work they would be tackling the next few days (ie. fractions, number lines etc) so I could try get her to look at this at home to give her a head start. This helped a bit. The teacher this year doesn’t do this. I’ve only met her once in October.
They send my daughter to do skipping for the last 10mins of the day to try release pent up emotions. I can tell which days she hasn’t done this by her mood on leaving school. She is more on edge and angry when she hasn’t done this.

That’s all the help we get. Not sure what else there might be though?

I’ve talked to my daughter about secondary school and she says she won’t go. I’ve tried to ascertain if it’s just the same feat of the unknown that her friends are feeling too, or more than that. She says that unless someone will meet her and take her in each day there is no way she will go. She’d even be expected to get the bus to school, which will not be possible for her. She gets handheld at her current school, and if that isn’t enough to make her go, we don’t stand a chance with secondary x

If you request an EHCP with school, an educational psychologist will visit school and make a list of the adjustments and supports that school (both primary and secondary) have to make. Once it's in an EHCP it's legally binding.

There is loads more support that she could be getting, so don't give up hope that things can get better.

Do you know of any parent support groups, charities that support families with autistic children to navigate the education system in your area? Usually these should be somewhere on your local authority's website under "Local Offer".

You need to get an ehcp and probably will need to get some good independent reports from an ed psych, salt and OT. I would also look at independent specialist schools. As she doesn't have a diagnosis I also think this needs to be looked at more quickly. If she does have asd, a diagnosis will help open more doors.

My dh is an SEN teacher. He immediately thought of autism when you said she wants to escape the loud noises. You need an edpsych.