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

Op I'm so sorry, that sounds so tough. I have no personal experience or practical advice but from an outside perspective it certainly doesn't look like you favour your youngest. You're trying to do so much for your eldest too. There is nothing wrong with taking the youngest out without her sister, she needs that too.

OP just some advice from you. Please cover your basic needs, particularly sleep. Take any offers of respite so you don’t get run down and ill. Anything to save time.

also somatic yoga, mindfulness and anything else to reduce anxiety. Just 10 minutes a day. So much better to learn it before you need it.

keep on top of Vit D, B12 and iron. Getting ground down makes things so much worse.

best wishes to you all. 💐

I posted on your other thread. Sorry to hear things are still difficult. My dc were very much like your daughter although they are young adults now.

School broke down for both of them and I had no choice about that unfortunately. They were both out of school for two years (separate years.)

Re medication, 5 seems very young for risperidone and does a GP prescribe it? Mine had it through CAMHS at the age of 8. My one dc was very angry on it and put on a lot of weight and it did not help with general focus or behaviour at school. My other dc responded very well but it did affect their heart rate and the doctor was concerned and wouldn’t allow them to continue it. I do believe in meds if they work but they did not help in the long term for mine.

Both my dc went to special schools eventually but it was a long road to get there.

I think it’s insensitive to be making comments like this when OP has said she can’t manage without a break. Plus at the moment she’s sleeping when she’s at school because she’s at work at night. So it’s impossible.

OP, I haven't yet read your whole thread, but I didn't want to scroll by without commenting and sending you a massive hug. I'm a grandparent and one of our grandchildren has very similar issues. Age 5, already excluded from school once and can only cope with a couple of hours school in the mornings. We are on a massive learning curve, trying to help out where we can to give Mum & Dad a break. I'm going to go through this thread carefully later on as there seems to be a lot of good advice from people that understand

The doctor recommended risperidone. The side effects were what worried me but at the same time her violence and her outbursts are so out of control. She is literally a ticking time bomb.

We are looking for a specialist school but places are few and far between. So I'm waiting and looking. This is not meant to sound insensitive so apologies if it is, the school issue. I put my oldest first 99 percent of the time. And I know her going to school is a massive trigger and I know it's hard. But her going is not negotiable. I need the break. As horrid as it sounds I need those 6 hours or ill explode. I love her, I do and I take her as she is but right now I just can't.

My 3 year old is almost 4. She's so excited to start school. My eldest told her today she would have no friends at school because she's ugly and stupid. I spend so much time picking up the pieces. My 3 year old asked that for Christmas she doesn't want to spend it with her sister. What do I say to that? I can feel my youngest pulling herself away. She's 3 for fucks sake.
I'm angry. Sorry. Today the eldest pulled out a chunk of my hair and spat in my face because she didn't want to go to school. I had to drag her into the car kicking and screaming. I'm sat with a cup of tea staring into space wishing it was vodka.

As for consequences for hitting. I've tried everything. Nothing works. no point yelling, she screams back and hurts me or herself or her sister. She broke her arm in September. Didn't phase her in the slightest

I've applied for the DLA form. I am going to have to reduce my hours but financially not yet. I'm exhausted. The only thing is my husband and I are on the same page. He is just as lost as me.

I understand that your eldest is in crisis, but I would ignore the people saying to pull her out of school. There are three other people in your household, their needs and your needs matter too.

What do you do when your eldest says something so nasty like that to her sister?

The assessment staff said we can say to the youngest that her brain doesn't work the same way as you and I and it unfortunately makes her say and do things that aren't very kind. I don't know how long I'll get away with that being enough. I just pick up the pieces. Explained and listed all the ways my 3 year old isnt stupid or ugly.

My 5 year old has started scratching and biting herself. I'm so lost. It's great having the diagnosis but now I'm just abandoned. Like I'm getting more advice from here than anywhere else.

I'm very grateful. I hope you all know that

From what you say your 5 year old has virtually no control over what she does or says at the moment. I understand.

My 11 year old (same diagnosis) is adorable. You'd like her. Her teachers like her. She has lots of friends.

But OMG the things she has said to me and DH when disregulated. I won't list them all here as this thread isn't about me but they have included saying I'm stupid, ugly, hopes I'll die, DH and I should divorce etc (he's her dad!) She was also regularly violent to us age 5-8 and still is occasionally.

Nothing made much difference other than time and addressing whatever she was anxious about. Practically, I used to have to lock a door between us when she really went for me.

DH and I can reason that she doesn't mean these things. Your 3 year old can't.

I think all you can do is let the 3 year old be with her grandparents as much as possible.

You're doing all the right things. PDA is so far outside most people's experience that they tend to back away once you start being honest. At least that's been my experience.

Your DH sounds like a diamond. DH and I nearly got divorced over the stress of it all.

Now go to bed, Mumsnet will be here later!!

Is your daughter aggressive towards other pupils and school staff?
Quite often an exclusion does demonstrate a school can't meet needs and they'll need to find alternative solutions.
I would consider section 20 and put her into care and maintain PR. None of you should live like this

Well, quite a few of us on this thread have lived like this at least for a few years while we figure out how to meet DC's needs.

Suggesting care is not helpful.

OP needs to claim DLA for her child as this will entitle the family to additional benefits (carer's allowance and/or UC with disabled child element and carer's element) which may allow her to stop or reduce her working hours so she can sleep at night.

Disability and carer's benefits exist for this reason; if a disabled child cannot cope with school then the system should support the parents to look after them.

It's a difficult system to navigate and it takes too long to get everything in place (DLA was about 5 months for us) but it's not "impossible".

As for consequences for hitting. I've tried everything. Nothing works. no point yelling, she screams back and hurts me or herself or her sister. She broke her arm in September. Didn't phase her in the slightest

For me, this is the hardest thing. DS (also PDA) has no fucks to give about seemingly anything. We do low demand to avoid blow-ups, but it doesn't always work. Recently we had to change our plans last minute because we were running late. On telling DS, he hit me over the head with a metal toy while I was driving and then pulled out a fistful of hair. I almost crashed the car. He can really hit it off with another child, giving me a glimmer of hope, and then with no warning, decide to treat them like shit, leaving me to pick up the pieces (and deal with the - totally understandable - parental disapproval). I will say he is less violent to other children at 8 than he was at 5, so some aspects of the nightmare can get better.

The only thing that has any effect on DS is threatening to withhold or cancel things that relate to his special interest. But even that is exhausting because he will whine and beg for hours/days, often waking up in the middle of the night and carrying on where he left off. I know there is a theory that autistic people have some kind of "double empathy" but I think that's bullshit in relation to DS - he has absolutely none, for anyone. That's a bitter pill to swallow when you have done your level best to raise a child who is a decent, considerate little human.

I relate so much to your feelings about school. If I couldn't work, I don't think I could carry on living - it's the only chance I get to feel normal and where I know there will be zero violence. Thankfully, we've got DS into a specialist school where he is settled and doing "normal" things for the first time, like going on trips with kids his age, which he loves. It took a battle to get him in because it's an independent that costs the LA a fortune, but I am so relieved and highly recommend getting on the SENco's case to sort out the EHCP urgently. Find a school that meets DD'S needs and push for it until they say yes - you really need to convince the la that you will be a huge pain in their ass in every way until they deliver the best possible education for DD.

Sorry for banging on about myself when you are looking for advice! I suppose what I am trying to say is that you are not alone, it's bloody hard (and shit), but KBO.

This is heartbreaking to read and I really feel for you all

For what it's worth, and I have already said this, I think you should "divide and conquer" by living separately one child each as a temporary emergency measure. It sounds as if your 5yo is extremely distressed and your 3yo is suffering as a result, and you need to protect them both.

Can you or DH take any more paid leave from work? If there is no paid parental/carer's leave available, how about sick leave? I'm sure this situation is taking its toll on you both and a GP would agree to sign you off.

What's so agonising here ( fellow mum with Autistic/PDA) child, is knowing school is too much but you just can't remove them. We are the same, it is not an option at all to be out of school. There are no decent specialist provisions. Could not cope with being home all day personally.

@Vinvertebrate when times were hard, my work was really important to me.

My job has theoretical, technical elements and that came as such a relief to the high octane, high emotion, home life. Colleagues were supportive too.

Also, and this is a very serious point: SEN is expensive! You absolutely do not want to add poverty to the mix if you can avoid it.

(I'm sure everyone realises that SEN is expensive, but just in case, here's a list of things we've paid for out of pocket over the last 5 years: private ADOS and QBcheck, first month of melatonin prescription before the GP took it on, psychiatrist, play therapy, NVR, Relate, physiotherapy, specialist optometrist, sensory OT, educational psychologist report...)

Obviously if these had been available in any kind of reasonable timeline through public sector services we would have done that. But there seemed to be nothing. Even the GP admitted that.

On the plus side, my DD has thrived at school although there was a lot of luck involved. Her primary were excellent (once I'd worked out what the problem was and got the diagnosis). Where we were extremely lucky was that they believed what was going on at home. She masked a lot in school.

After two years of struggle I managed to get an EHCP naming my preferred secondary and it's working out so far.

There are decent schools and settings out there.

I'm encouraged by the rise of online schools too, although I know they wouldn't suit everyone.

Be careful with SENDIASS. Some are good, but many repeat the LA’s unlawful policies.

Keep offering DD her safe food.

With an EHCP, unless the school is wholly independent, not having a place/being full is not enough of a reason to refuse to name the school. The LA has to prove the school is so full placing DC there is incompatible. Obviously there is a point they can do this, but that bar is higher than many LAs and schools admit. Although they often force parents to appeal. If there isn’t a suitable school, there is EOTAS.

Whilst getting an EHCP, if DD can’t attend school and is compulsory school age (if she isn’t already, she will be in January), the LA has a duty to ensure she still receives a suitable full-time education. This is not you deregistering and electively home educating. This is recognition DD is unable to attend, but the LA remains responsible and you do not have to deliver, facilitate or organise the provision.

if a disabled child cannot cope with school then the system should support the parents to look after them.

No. If the child cannot cope in school, the state must provide alternative arrangements. No parents can or should be forced to EHE.

@Phineyj is DDs secondary school mainstream? ( Sorry to derail)

@Vinvertebrate, or anyone in the same/similar position, if your DS is ever unlawfully informally excluded again, email the HT informing them DS will be attending full time unless formally suspended and if they continue to try to act unlawfully, you will be forced to pursue legal action. If they persist, you would need a pre-action letter. If the pre-action letter doesn’t work, you could pursue judicial review proceedings. You may also wish to consider a disability discrimination case. Alongside that, if you are in that situation again, remind the LA of their duty to ensure DS receives a suitable full-time education, and if this isn’t forthcoming, you will be forced to pursue JR. Then, if that doesn’t work, you need a pre-action letter as above then JR proceedings if needed.

Although it doesn't seem it to you, you are doing a really good job. Don't doubt it.
I think you are doing the right thing by giving your youngest 1 on 1 with you and you're exploring all options to make thr situation better and as therapeutic as possible.
Very, very difficult situation, I hope ot improves.

I'm so sorry. You sound like wonderful parents. I'm sure you have, but if you can, make no demands of her, even talking to them can be interpreted as making a demand, even if it's about an interest of theirs.

My youngest has PDA, but nowhere near as severe as your daughter. He was worst through 4-7. He's 8 and coming out the other side, though this morning also tried avoiding school then screamed in my face but he didn't hit me, even when I wrestled his iPad from him. I know it doesn't sound it, but that is huge progress.

Sending you all strength!

I home ed and I definitely don't think you should take your DD out of school at this point. Home ed is all consuming and, as you have said, you NEED that time away from her.

Maybe if the meds work and you start getting some peace you could look at this as an option again, because so many PDA kids find home ed is much better for them. BUT. Only if it works for you too.

I hope you manage to find a place at a dedicated school. This sounds like a great option for your family, if you can.