Update to 'I don't want my five year old'

[icann]

I thought I'd start a new thread because the other one had 800 plus responses and I think the limit is 1000

Anyway we started a private assessment with a strong suspicion of autism and possibly PDA. And maybe even ADHD. We've had the first assessment. We were going to be waiting too long on the NHS and our in laws helped us out with the costs. We've checked its a recognised society and it will be accepted by school.

We had a massive issue which is why it's taken too long for a reply. She broke her arm. She refused to go to school and we have been pretty much dragging her to school. I need the break..unfortunately she threw a cup at my 3 year old and she required stitches to her face.
I reacted way too slowly to stop it. I should have seen it. My 3 year old was bleeding a lot, apparently face injuries bleed like crazy. I had grab my 5 year.old and I am not ashamed to say I physically locked her in the living room so I could phone my husband to get home now. She trashed the entire living room. Her arm needed re casting as she broke it. My 3 year old needed stitches.

We've reached breaking point now and this second assessment can't come any quicker

Has the GP suggested anything to help with her sleep? Is the risperidone meant to help with sleep as well, or is she taking melatonin?

Personally, I'd consider that one of the most important things to get on top of.

My PDA DD is always a lot more dysregulated when she's not had enough sleep. I'm covered in bruises from a meltdown she had on Sunday after being away at Scouts camp (which she loved, but sleep was hard to come by).

Absolutely this. My DD is the same after bad sleep. Low dose melatonin has made a massive difference. Also meltdowns with aggression much much worse when she needs the toilet. Sounds a bit silly but even the slightest hint of constipation (or even just withholding) makes her a different person. It’s taken me ages to realise that’s what’s going on. Toileting and PDA can be a whole thing. Your body telling you you need the toilet =demand. It’s so hard.

I'm still not even sure if this is a good idea but I'll put it out there...

For the people covered in bruises. DS and I both do kung fu training. When he gets aggressive it can be channeled into sparring, which he loves (light or no contact) and I know how to block.

Just wanted to say that I’m thinking of you. Such an impossibly hard situation. I really hope the medication is helping even a tiny bit.

So we've had an awful couple of weeks. Oldest got asked to leave school at the beginning of the last week of term. Just till the new term. She was aggressive and she was throwing chairs and hitting pupils and staff. Or screaming in a corner. She's scratched all down her face and all down her arms. My youngest has been staying at the grandparents. It pains me to send her away but she deserves a normal Christmas for lack of a better word. She deserves santa and magic. I have been driving down every night to tuck her in and driving down every morning to take her to nursery. When it was open. I've decided to take sick leave on work..I'm burnt out. And if I'm not sick now I soon very will be.

Tomorrow is Christmas. My eldest is adamant she isn't getting any presents because she's bad and she hurts people. She is of course getting presents but the plan is for the grandparents to drop off youngest in the morning and attempt a family Christmas. We've got no expectations. No crackers, no loud noises, no demands. It's pizza for dinner because they amazingly agreed on it. So no Christmas dinner but if it keeps them happy it keeps them happy.

The risperidone is awful. She's so tired and she's gained weight. Around her face and her hands and feet. Shes got this awful constipation and shes complaining of blurred vision. No effect on her behaviour so I think we're going to persevere.till the new year and then wean her off it.

I don't see if things are getting any better but here we are.

Do you think the violence to self and others has actually intensified on Risperidone? Anecdotally I know a young person who experienced this on this drug (increase agitation and physical violence). They were autistic and I wonder if they reacted differently because of that.

Could you ask to try Quitiapine? In some small trials it was found to be more effective at reducing aggression and violent behaviours than Risperidone. Risperidone overall showed low effectiveness for reduction of aggression and violent behaviours.

If your child’s violence and aggression is rooted in the extreme anxiety of PDA would a medication with a high efficacy for anxiety be a better option rather than an antipsychotic?

The violence at school seems to have coincided with both the risperidone and the transition to a more formal year 1 way of learning. Reception was very laid back and she struggled with that anyway but now she's massively struggling. The violence to herself has massively increased since the risperidone

I don't know what area you live in but social care and education should be working together on this to address the current crises at home and school. I would suggest asking for a social care assessment for you daughter in the first instance to start the process of getting some help at home (won't be a lot but better than nothing) and maybe some respite down the line. School will continue to be tricky even with a 1:1 if they're not really on board so suggest you push with the local authority to identify a more suitable placement with urgency. She's at high risk of permanent exclusion ( I hope the time out was covered by proper paperwork for a suspension?) and if that happened they would have to make alternative arrangements for her. So sorry this isn't improving, it must be so hard for you all.

I agree that social care should be involved, not least due to the violence and harm she’s causing herself, but the impact of his on the youngest.

I’m aware of this FB group which might be able to offer solidarity and support also

I'm so sorry things are so tough right now, OP. I can't imagine. I hope your day tomorrow goes as well as it can and that you find some moments to have some peace and enjoyment yourself. You're doing all the right things, which is why it seems so unfair that things aren't getting better for you all. It's not from want of trying on your behalf.

I'm so sorry to hear this, OP.

I hope this is the darkest hour that comes before dawn.

I'm sorry you are going through this 😥

Sorry to hear that op. My dc did not respond well to risperidone either and it did not improve their behaviour. I think you are right to keep everything low key this Christmas.

Hello OP, I’ve wondered how you’re all getting on.

Another autistic DC here who didn’t respond to Risperidone. I stopped cold turkey when DS soiled himself in bed and had no memory of it, because the Risperidone had knocked him out. DS is not medicated at the moment and is still violent, but we’re making baby steps in terms of progress.

The only thing that has helped so far is getting DS into a specialist school setting, with only a handful of children in his class. He managed a (small) part in the Xmas play and got a school report that wasn’t appalling, so I’m taking it as a win.

DS will be having pigs in blankets and crisps for Xmas dinner. Your pizza sounds positively nutritious in comparison!

I hope you all have a peaceful time xx

There are other medications DD could try since Risperidone isn’t working for her. DS1 takes Risperidone but has tried Aripiprazole and Olanzapine.

Oldest got asked to leave school at the beginning of the last week of term. Just till the new term.

This sounds like an unlawful, informal exclusion. The school should not be doing that.

100%. I know it’s hard, but don’t establish this precedent. They need to be providing her with appropriate accommodations and not excluding her.

So she wasn't formally excluded? I didn't sign anything. They just said she wasn't coping and thought it best for the break. She's definitely coming off the risperidone

If it was a formal suspension, you would have received formal notification. Have a read of the statutory suspension and exclusion guidance here. The school shouldn’t be informally excluding DD. That is unlawful. In the future, insist DD either attends or is formally suspended. Don’t worry if the school does suspend. It is better than an informal exclusion because it will a) provide you with evidence of unmet needs to support pursuing additional support/an alternative placement, b) force the school to follow due process, c) limit the number of days the school can suspend for, d) allow you to challenge any exclusion, and e) ensure DD receives alternative education for longer suspensions.

Is there any chance that your gp would prescribe antibiotics... my youngest had some wired gut things going on.. I got a detailed gut bacteria analysis from genova diagnostics through a naturopath and convinced my gp to prescribe for him... he changed wi6hin days of treatment... it wasn't pandas but was unproven.. the proof was his recovery.

agree with this. School need need need to be going through every formal process. In my my LA a formal exclusion would result in referral to a PRU which pp says is not a bad thing but could be a very positive step in helping to identify need.

your school will have a SEND governor - this is statutory- find out more who it is and email with current status and ask how they plan to move forward.

Re your latest update. I could literally have written this. We are in an identical situation minus the medication. I'm exhausted too. I'd love to share some positivity but I'm numb inside. I'm just in disbelief that there is another in the same situation as it feels impossibly lonely. I'm absolutely here in solidarity.

💐

icann and bhun. I hope your Christmases are as peaceful as possible.

Has the school nurse been involved OP? They might be able to support you with dealing with school. I’d also contact SENDIASS who are funded by the LA to help parents deal with school issues for children with SEND.
Companies like Send Family Instincts offer low cost monthly memberships that give you access to a help desk so you can email for advice on what to say when you have to email or speak to school. They know the law inside out. Have you been able to apply for the Education & Healthcare Needs Assessment yet?
I’m so sorry you’re going through this.

Did they give you a letter and a formal way for her to return to school?
If not it is an illegal exclusion. I'd probably get it documented via a confirmation email.
It should also strengthen your case with the LA for an EHCP, you could even copy them into the email, and forward any replies from the school if they are not copied in.