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

So sorry to read what you are all going through. I saw your original thread but haven't read the entire thing. I would highly recommend to check out Yvonne Newbold's resources here https://www.newboldhope.com/ and to join the Newbold Hope family support group if you're on Facebook. These have been a real support to me as we have been through some low times with my autistic son being very violent due to meltdowns and dysregulation. It doesn't need a diagnosis to get started and things really can improve.

Oh lovely, that sounds so traumatic for all of you. Head/face injuries do bleed a lot, so often look much worse then they are, but even so, an awful experience for the 3yo (and you).

Could you set up some kind of safe space, where the 5yo can be contained during meltdowns or at times where you can't be 100% vigilant. They sell secure tent/beds for this purpose (I'm not describing it well but will attach a picture of what I mean).

Shorter term, could you convert her bedroom for this purpose? Remove anything hard or heavy, possibly even furniture if she's likely to bang herself against it, then put in lots of cozy blankets, soft toys and light weight sensory toys/lights etc, so it feels like a calm positive space to be in (not a punishment). Obviously she can't be in there all the time, but 10/15 minutes a few times a day won't do her any harm, and would definitely be better then her been able to injury herself or sibling.

I'd probably also 'child proof' the whole house, put away anything that can be thrown or used to hit, down to replacing your cups/plaits with light weight plastic ones.

I know your waiting on neurodiversity assessments, but are there any other professionals you could involve? Occupational therapy have been great for my autistic kids, as were speech and language (not for vocabulary, but work with how conversations work, how to explain feelings and ways to communicate when too disregulated to verbalise). In her case some type of mental health input might be needed aswell, to deal with your family relationships.

I’m so sorry…. You sound broken. If you are up for it, take some practical steps while they are both in nursery.

• talk to your GP about yourself. Sounds like you could benefit from therapy. I’m sure the waiting lists are equally long but getting on them is at least a starting point
• do an audit on your house for dangerous items she can throw. Glasses (get some nice plastic ones) vases, is the tv screwed on to the wall? Furniture attached to wall. Sharp edges have protectors
• search this site for resources, books especially on PDA. I believe the explosive child is usually recommended
• talk to you SENCO at school for resources/ recommendations etc
• talk your youngest daughters nursery. They may have some ideas to ensure she is well supported
• Facebook is a great place for support groups - hearing from others in your position may help to make yourself feel less alone
• be very open with your support network - especially the in laws who sound great. Tell them what you need from them and don’t feel guilty about it
• remind yourself this isn’t your fault. You are obviously a wonderful mother to care so much about both your children

Whilst I know you want a diagnosis, I would be seeking professional input on managing the situation, your gp practice should be able to sign post or you can self report to social services for help. I've been in your position to some extent and I removed anything I thought could be misused from her bedroom at that age, we also used plastic cups for drinks. I won't pretend life was easy but things did improve during primary school, teen years not great but now things are better

I'm so sorry, OP. You've had so much good advice that I can't add to, so just to say a stranger probably hundreds of miles away is thinking of you and sending you best wishes.

Just wanted to say- I’m in your position. It’s unbearable and you have my total sympathy. Take care of yourself.

so sorry to read your update op.
That's positive you've gone private for a diagnosis and definitely sounds like the right thing. Hoping you won't be waiting long and will get some answers soon.

Hi icann. I'm so sorry about how difficult things have been.

How are both of your DC physically now? How are you and your DH?

I'm glad you've started the assessment process. I hope this helps and you get some answers, and some support.

Oh love I'm so sorry.

I think you did the best you could at the time which was to separate your children by any means necessary. You are just one person.

What did they do at her first appointment? Have they said what the pathway for these diagnoses will look like for her and have they forwarded you any resources at all for management of these diagnoses in the meantime? Any forecast for what they expect of her development?

How are things today, OP? When is the second assessment? How's your 3yo? Hope you're doing okay

So sorry OP. Can you get any respite care so you can spend quality time with your three year old and she can be in the house without fear. Also help for her to process this.

I grew up with a sibling with ASD. My parents are great people and superb GP. But my childhood was a place of fear and confusion as I didn’t understand the reactions of my sibling. My first memory is of sitting in the back of the car and him spinning sideways and unleashing a volley of wild kicks because he didn’t like something about the route.

Hey OP, so sorry to hear things have deteriorated.

We went through something similar four years ago (not as bad, as the violence was to me and DH as no siblings).

I hope this will be the start of improvements for all of you. I have tears in my eyes thinking about you as it's bringing back our experiences a bit.

The darkest hours are before the dawn.

Your inlaws sound great.

Hang in there. Keep posting.

I agree with this, although I know that respite care is like gold dust and many families in dire need don't get it. And a lot of foster carers would not (or even could not) take on a child like this.
However if it were possible or offered, I would definitely be taking it up, for the sake and safety of your lovely second child. I hope she is ok.
What a shitshow you have been dealt OP.

Also OP, I don't know what your financial situation is like.

Please make sure you gather evidence as it comes from the professionals and apply for DLA ASAP and seek advice on how to fill the form in, as the questions are not as black and white as they appear and there are categories I think your daughter would hit that you'd not be aware of. More than happy for you to drop me a PM, I know the SEN boards are a bit quiet. You don't need to wait for the diagnosis, just proof of need.

Once you've got DLA if you have to give up work you can look at carers allowance.

If these are things you're entitled to, I think it would really help because it sounds like your little girl needs a lot of intervention which will require a lot of parental presence. If your in laws are able to help finance private OT this can also be used as evidence but might get you the help you need a lot sooner.

It's a very long shot but would your in laws allow DH and 3yo to move in with them, and you and DH alternate who lives with who until you're making good headway with therapies and interventions so each child has 1 on 1 support?

Have just read your entire first thread and just commenting in utter heartfelt sympathy for your situation. You and your DH sound incredible, doing your absolute best, hope the assessment leads to help for you all and soon. xx

This from me too, OP

Hi guys.

I appreciate everyone's replies. So we had the first assessment. That was for me and dad. It was questions about her development and her behavior and things. We had a lot of videos and things. We have an evaluation next week where they said they'll watch her play and interact etc. They want a report from school which they have applied for.

My 3 year old is so quiet. It breaks my heart to type that. She's been spending so much time with just me. My husbands job have been amazing. He's taken 2 month paid leave which is a gosesnd we didn't even know was available. His employer is fantastic. I mean he doesn't have any holiday for the foreseeable. We are trying to split the days. I've been taking the 3 year old to nursery and he collects one day and the other does the same with the 5 year old..

It sounds awful, please don't judge but on the days I collect the 3 year old I take her to the park or for an ice cream or just some time with mum. She misses out a lot and right now she needs it. Her stitches have been removed and she has a scar. Her sister apologised and cried for hours when she saw the bandage..I don't understand how she can seem.so genuinely remorseful and then not even 3 hours later bitten her because of reasons I don't know.

The 5 year olds arm has been recasted. Thankfully she didn't do any more damage to her self.

We had a spare room, we'll more of a cubby, making it into a quiet room for the 5 year old. She wants fairy lights and some cushions so we are doing it. We're also doing up the 3 year old into a big girl room and less of a nursery. I don't want her to feel left out

I still have no idea what I'm doing but that's where we are

That sounds good OP. A safe space for her to be when she's out of control is definitely progress.

Taking the little one for an ice cream and some mummy time is a great idea! Why would that sound awful?

Hang in there.

This book has literally just been released, it may help:
When the Naughty Step Makes Things Worse: Parenting for Children (and Adults) Who Need Something Different: Amazon.co.uk: Fisher, Dr. Naomi, Fricker, Eliza: 9781472148681: Books

Hi OP, I really feel for you. You're working so hard to keep everything together.

It seems like your daughter really can't control, understand or explain her outbursts. As an adult it makes sense to ask "well why did you do that" or "why did you do it if you know it will lead to consequences" or "why did you do it when you also really care about your sister". But I think that's asking a question that she just can't answer.

It might be helpful to imagine that she is getting taken over by an unstoppable impulse. She says "I just felt like it" - how else would you describe an impulse you can't control, as a 5 year old. Help her to see herself as a lovely empathetic girl who has these outbursts that she can't control yet. That must be incredibly scary and upsetting for her, seeing all these awful consequences and feeling it's her fault but not having the power to stop. Explain to her that you're committed to protecting all of you, including her, from these outbursts, and you're putting in safety measures, and also looking for to help for her stop having the outbursts.

Hello OP

No advice, just solidarity and 💐. I’m in a similar position with my 7 year old DS, diagnosed at 3, who has AuDHD (PDA), SPD and dyspraxia. I’ve been on my knees with despair over DS many times. It’s so bloody relentless.

I’ve had a glimmer of hope through DS’ new specialist school, although I had a bunfight to get him in. Getting ND DC the right support makes a world of difference, although I appreciate it can feel impossible at times. Meeting the other SEN mums has been great too.

X

It's hard to understand if you've not got much experience of autism.

She doesn't lack empathy, her fight/flight/freeze/fawn response is just so strong when she is dysregulated that it overtakes any rational thinking or empathy. She's only young anyway so she naturally lacks impulse control but she's got other challenges that her peers don't.

She probably is genuinely remorseful but she hasn't got the tools or skills to prevent the dysregulation from happening in the first place, and because her needs are so complex and hard to predict, and you're a family with 2 children and family life isn't rigid or easy to schedule or easy to prevent change and these are the things that can cause dusregulation even if it's just the perceived threat of change.

After the diagnosis I really hope they point you in the direction of other services, therapies and interventions that you can all slowly start implementing because none of this is your fault, and you all deserve peace in your own home. Kids aren't born with a manual. You're doing amazing.

I’ve been thinking of you op and glad that this and your other thread have given you lots of really good and practical advice. Sometimes I can’t get over how judgemental mumsnet can be but threads like yours show that it can be for good. Please come back here to vent, download ect if you need it. No judgment, just support xx

I have no idea if anyone is still checking but here we go

The 5 year old has a formal diagnosis of autism with PDA. We've had a horrible 3 months.

So it all came to a head in October. She threw my youngest at a door. And she required several stitches. Countless bruises. Due to the circumstances we had to speak to a social worker linked to the a and e visit. No further action taken.

Oldest is massively struggling at school and we are waiting for a 1 to 1 thru her diagnosis. Home schooling has been suggested but I can't. My 3 year old is going to nursery 5 full days a week. We get the 30 hours but thru the grandparents help they top it up.

We've had to massively rethink our parenting. I still feel like my 3 year old massively loses. And it is so hard to navigate with our eldest. My husband has changed job so he now works mainly from home and I work nights so somebody is always at home with the kids.
Any advice is massively appreciated

Sorry to hear things are still difficult, OP.

They were worst for us around age 6-7 but we got the diagnosis at 7.

I think having a diagnosis does help as you know you're not going mad!

Have you or the school requested an EHC needs assessment? If they've told you "we have to complete several cycles of plan, do, review" or something like that, it's not true.

What support do you have for yourself? Are you sleeping enough? Nights sounds hard.