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

@Phineyj

It almost always turned out there was something going on with her when she was being extreme. Just not always easy to figure out what.

This resonates with me. Increasingly I do generally know what it is. There's normally something. Often because of excitement, anticipation, frustration or transition. First or second day of a vacation is always a complete nightmare for example.

If I waited for DS to tell me what was winding him up I would wait forever. He doesn't know.

I am so sorry for you, however difficult is there another way? Residential care ? I don’t mean this with malice but you have to be well yourself and so do the rest of your family. It is not a failure to explore other avenues

@Jibberjabba this is so difficult as there is so little available for people. I'm sure some form of respite would be more welcome than residential care. For some reason, getting any respite is incredibly difficult with completely atripped resources.

I watched a great BBC documentary recently on parents managing violent Autistic children. It was incredibly upsetting. I felt for the kids but the parents were on their absolute knees and no one would listen.

As it stands the Op s child is in a mainstream school with no EHCP hopefully the Op can secure one ,but without one even a specialist setting is out of the question
I'm sure you mean well but residential schools are incredibly expensive and they are very much a last resort I'm not sure why posters keep suggesting them .

Which documentary is this please?

https://www.bbc.co.uk/iplayer/episode/m0023db6/spotlight-i-am-not-okay-spotlight?seriesId=more-like-this

I don't know if that link works. It's on BBC and called

Spotlight; I am not ok.

It's really worth a watch. It's upsetting and quite distressing at points.

Sodium Lauryl Sulfate - my daughter only fairly recently told me that this in toothpaste literally felt like it was burning her (think rubbing chilli paste on your gums). She now uses the Kingfisher fennel flavour one with fluoride.

Lots of ASD children have odd diets, lots of people are managing by letting them eat what they will, and ideally topping up with some kind of multivitamin.
Similarly if you have to use screens to decompress then do. Creating a safe space (maybe a pop up tent with cushions and blankets and a mobile), where you can allow her to go when it is too much. And where the baby isn't allowed.

I’m sorry that I haven’t been able to read the whole thread but I have read your posts OP. I have some experience of children with special needs and I know how difficult it can be to access help.
You will need an EHCP so the sooner you get that underway the better. It seems like you are going to need a special school and you can’t access one without. Special schools should help your child emotionally as well as educationally. They should provide an environment which helps her regulate and stay calm most of the time because they have the staff and facilities needed. This was my experience anyway.
Do not agree to home educate. Many children with ASD have firm ideas that school is school and home is home and will not co operate with a parent who tries to be a teacher. I was told this by a teacher who specialized in educating children with ASD.
How’s her sleeping? A tired child is never well behaved. Apologies if you covered this on your first thread, but melatonin is a game changer and it took me years of explaining the issues we had before someone suggested it to me.
Sending you a hug and I hope you get the help and support you and your family need.

Another thought - the person who was the most helpful to us was a pediatrician that we saw as part of the EHCP process. I thought they couldn’t tell me anything ai didn’t already know but they were very helpful.

Honestly OP is putting her in care not an option you would seriously consider? I have so much admiration and respect for you and your husband and youngest child. I'm sorry but everything you have said that has gone on I'd have packed her bags already

This is interesting, thank you. A different perspective. I’m very new on this particular journey and certainly couldn’t go to the extremes that Casey has done to accommodate her child. Perhaps I shouldn’t have mentioned her. My own experience is just from seeing her posts and thinking ‘omg, I’m not alone! Someone else has experienced this’ and many of her insights have helped me to make sense of what is going on.

To clarify then, I guess it is her descriptions of PDA that have really helped me understand some extremely challenging behaviours. I’ve got a good (developing!) understanding of autism. PDA, to me, feels like a very different set of needs and that’s what I have been grateful for guidance on. I too, would absolutely not cope with home schooling my child and it would be unhealthy for the whole family.

TLDR- I’m sorry- avoid Casey! It was just something that had made me feel less alone. ‘Demand avoidant’ descriptors don’t really go far enough for my child and my understanding of it doesn’t fit with what I see. PDA does, for us.

OP- I know how exhausting this is. Just do whatever you need to do to survive the next moment and know that you are absolutely not alone.

Sure, it’s very easy to suggest that OP heartlessly chucks her daughter away into the care system, when you haven’t actually engaged your brain, and considered how a mother - no matter how much she is struggling - still has that primal need to live and care for that child (even if she doesn’t like them that much).

You know what the outcomes are for children in the care system, right? Dire.

Also think for a moment how a five year old would feel if she was dumped into foster care while her sibling got to stay at home with Mummy and Daddy.

Honestly, it’s such a stupid suggestion it’s offensive. “I’d have packed her bags”… no you would not 🙄

I really hope your not a,parent.

@onceisenoughinlife - it's harsh, that last sentence, but it's an important consideration for some tbh. I understand a few parents have come to a point where children have gone into residential or into care.

I have seen situations online where people are terribly criticised for it. I used to think how could you. A part of me can understand where kids are older and bigger how this can come about.

If respite were more accessible and available this would help hundreds of families I believe. It would cost less than the bill of residential or foster care. The documentary I linked above highlights this. Just a few days of respite a month could have prevented the kids leaving the home permanently!

No need to apologise! I actually discovered her like you did. She described something my son does frequently (he says “I’m booored” constantly but refuses every single thing I suggest) and I’d never come across someone describing it, and also putting it into the context of demand avoidance.

So, clearly she does have a valuable role to play in advocating for PDAers. She just rarely offers up useful strategies (her comments are full of people saying “But what do I do though?) and when she does, they’re horrifying… to me at least.

Packed her bags ??
I hope you're not a mother.

I'm one of those parents i had a severely disabled child and we get two over nights respite ,s a month,every other Saturday we get five hours in a special needs club ,and a,day week every school holiday ( except Xmas) in he same club
And that's more than most people
However most parents don't just pack their five year olds off to residential care even if that was an option which it isn't

have you started the risperidone yet?

@x2boys I'm so glad you have that. I'm a bit surprised as some seem to have nothing. I'm sure it's nowhere near enough for you. I wonder how much is a postcode lottery all this.

It didn't just happen ,my son is 14 now we have only had over nights this year ,it's taken a long time to get a reasonable amount respite
Unfortunately help is limited so over night respite is usually offered to children with the most complex needs

@x2boys so so wrong and utterly unfair. The system is so messed up.

Edit - unfair you had to wait so long and push so much for the basics just to be clear. Thought that could be misinterpreted.

It also depends in part on parental ability to navigate the system and enforce DC’s rights. It shouldn’t be like that and fails the most vulnerable. Sadly, it isn’t going to change in the foreseeable.

@BrightYellowTrain a part of me hoped that under a new Labour Government, things might move in the right direction.

Maybe it will but I think it will be gradual it will need a,lot of investment in social care to be able to adequate respite to most families

Yeah because it's that easy. Just pack the 5 year old's bags for a nice quaint little "residential care facility" where parents can pop in and out and sit in a garden for visits. Places are readily available and just offered out for free. Oh and there's absolutely no abuse scandals, ever. Jesus Christ.