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

I hear you. I just wonder if her behaviour might become less extreme if she has a break from school for a bit. No judgment though if you decide against that option.

Start the medication! If it doesn't help, try the next one and so on. You need a glimmer of hope and medication might give you some.

OP's daughter has already been assessed and diagnosed with autism and PDA.

PDA is commonly misdiagnosed as ODD, so i think it's more likely that her recent diagnosis is correct, and she has PDA not ODD.

Do not take her out of school!

If they say they "cannot meet her needs" then this means the LA needs to find her a place in specialist provision.
I would contact the National Autistic Society and try to find a local group. They will be able to help you find local provision, some ASD schools will not take children with PDA. You need a ECHP. Apply if the school hasn't. Apply for DLA, and use the money for extra support.
If your child ends up at a private school because of SEN that is exempt from VAT.

Behaviour is communication. And there will be factors leading up to out bursts but it can be a culmination of lots of little things.

I think it depends on the psychologist as my friend was told the opposite of that for her ds.

Either way there is far more going on with that little girl and the OP needs some help!

DS1 takes Risperidone. It isn’t a miracle fix, but it has been worth it.

Below is a list of things that may help. Don’t try to do it all at once. That would be overwhelming.

• Request an EHCNA. On their website, ISPEA has a model letter you can use.
• When was DD 5? If before 1st September, if DD can’t attend school full time, and she doesn’t sound able to, the LA has a duty to ensure she still receives a suitable full-time education. IPSEA also has a model letter you can use for this. If DD turned 5 since the 1st September, this will apply from January. Don’t deregister and electively home educate.
• Request a home OT assessment. This can help look at making the house safer and better meet DC1’s needs.
• Request social care assessments. A carer’s assessment for you and an assessment by the children with disabilities team for DD. On their website, Contact has model letters you can use.
• Also, look at your local short breaks offer.
• Apply for DLA. Call for the form then it will be backdated to when you called as long as you return it by the set date. Cerebra has a good guide to help you complete the form.
• Contact Home Start to see if they can support you.
• If it is something you would be interested in, Scope offers mentoring to parents whose DC have recently been diagnosed.
• As DC2 gets older, contact your local young carers service. How useful they are depends on where you live, but they can be quite supportive. Some people find Sibs quite helpful too.

You might find that the medication helps her get into a space where she can learn techniques for self-control. When she's constantly heightened there's no way she can learn anything.

It's so tough, icann. You are doing everything you can. You are not failing.

Can you say a bit more about the eating in case any of us can think of anything?

I think a lot of us have poor eaters!

You need to apply for an EHC plan. Special needs jungle has a model letter you can use. You don't need to tell school, they will have to provide evidence.

I'm so sorry, it sounds exhausting.

Have a look at young carers for your three year old, or the charity sibs (siblings)

💐

that Is completely understandable! Honestly it is a huge ask especially where there are additional needs involved. It would also mean you’re on your own with regards to the LA having to provide things like funding and ehcps. That’s my understanding anyway.

sorry it’s all so shit. It is incredibly hard.

For the eating, have a look at ARFID. Push for a referral to a specialist clinic such as the Maudsley’s ARFID clinic. Dr Gillian Harris and Dr Rachel Bryant-Waugh are experts in ARFID. They have some books available that may be helpful.

When you say DD isn’t eating, do you mean at all? Or just not much (if so, how much is she eating?) or only certain things?

Would DD take a multivitamin?

You can get multi vitamin gummies though I don't know if they're any good.

We briefly had the magnesium ones then DS stole the box and ate half of them, cue much stomach upset! I haven't got them again since.

Risperidone didn’t work for us. It just made DS sleepy and increased bed-wetting (because he was sleeping through the “urge” to wee).

I had years of the school not meeting needs and enforcing a reduced timetable for DS. I told them it was unlawful. But the school didn’t care (and neither did the LA). Don’t withdraw your DD, hold the line, and (sadly) expect absolutely everything to take 3 times as long as it should.

I am sorry OP. The expectations and judgment by others of the (usually) mothers of SEN children are diabolical.

Hand hold op - I think you're absolutely bloody amazing

I agree it sounds like you’re doing amazingly well. Especially as you’re still working!
Definitely apply yourself for an EHC Needs Assessment with the template letter posted earlier on the thread. You could contact SENDIASS for help locally and keep posting. School are breaking the law by suggesting you homeschool so you may want to point that out to them.
j also agree it’d be good to try the meds. You may be able to stop them again when other support has kicked in and she’s feeling calmer in herself.

@icann have you applied for disability benefits for her? From how you describe things I think she would qualify.
I would also speak again to social services and ask to be put through to the children's disability social workers (not child protection) and see if they can offer some support. They may well be able to help with some respite care or help with some practical things.
Could you afford to pay for some extra help? See if you can find a local carer/enabler who could come in a few times a week and help to take the pressure off a little and free up some time for you to either spend with your youngest or just to take a breather.

I'd also look into getting some counselling for yourself. You're really in the tranches right now and having someone completely impartial to talk it all through with on a regular basis can be massively beneficial.

Do your DC both have separate bedrooms? Could you get a small tree for your younger daughter to have in her bedroom?

Sorry just finished work. That's a really good idea to get my youngest a small tree just for her room. She's only 3 but she's so excited for Christmas and doesn't understand why we can't have what everyone else has. There's already a resentment growing between the 2. I can feel and see it. The youngest feels very much like it's her sisters way or no way and to be honest I can see her point. I don't want my youngest to feel pushed out or pushed away. She's already around her grandparents a lot. So I don't know what to do about that. I've got every Sunday off and I make that mummy and youngest day. I have Thursday nights free and try to do something just me and my oldest but she either doesn't want to know or insists she wants to come Sunday. I don't allow her to come Sunday. That might sound unfair. She has all day with her dad Sunday. Again I'm not favouritism one.

As for the eating. It's terrible. If its not bread or pasta or occasionally the tinned spaghetti she won't eat. We've had plates smashed, food thrown. She bit me yesterday for taking her plate away because I stupidly thought she was done.

I'm going to try the medication. But I'm so exhausted. I don't want this to be my life forever. Everything in me tells me to just run. Take the youngest and run. I know it's not her fault. God I really do but this isn't my fault either.

@icann you and your husband sound like wonderful parents, I know it doesn't feel like that at the moment though.

I'm wondering what school are doing to support? Is there an EHCP needs assessment being processed? It sounds like she needs to be in a specialist school where there will be less demands and there may well be an improvement in how she is at home as a result. Its not a quick process, and it's rarely an easy one, but sounds very much needed.

Are you and your husband getting any support?

I’m sorry I don’t have anything more productive to add but I would start with taking the eldest out of school and see if her behavior simmers down. My daughter’s behavior went massively downhill when she started hating school. I wish I had listened to her and kept her home

You are doing a wonderful job in impossible circumstances.
I have a non-verbal twelve year old DS whose behaviour over the past year has been extremely challenging (due to a mixture of puberty and pain from chronic constipation) and I relate to everything you say. It's not our children's fault but it's also not ours or their siblings'.
What has led to some action from the council and from doctors here is making my problem their problem, and probably triggering safeguarding concerns (in relation to my safety I mean). My DS's teacher saw him attack me when I came to pick him up - it took three staff members to get him off me - and since then they pressed and pressed the council for us to get interventions and respite. Similarly, the paediatrician and the GPs just did fuck all about the constipation, endlessly prescribing more movicol that he won't take in anything like the doses needed for it to be effective, until I told them we would need to consider residential care because of his behaviour and it was their fault (and that I was considering legal action for disability discrimination), they're doing more tests and recommending in patient treatment now.
I would recommend going to the GP and telling them all that you have said here, and that you need help or you can't make your home safe for your five year old or keep yourself safe. Break down. Cry. Rock in the corner. The system gets away with not helping people because it can pretend that we're coping but nobody can cope with this!
I 100% relate to what you've said about not being able to bear her being out of school! And I am sure PPs are right that it will be much easier to get a specialist placement from the position of her already being at school. Insist on seeing the senco and level with her, ask why on earth they haven't done an EHCP referral already and say it seems clear that they can't meet her needs in the long term so you want to work with them on transition to an appropriate setting. My DS is hugely intellectually disabled but I know lots of kids who are academically able but have huge behavioural challenges etc who go to schools with individual therapeutic approaches (of course it's a battle to get a place but so worth it for the parents) and it sounds like that might work much better in the long run.
Lastly (ignore if this isn't an issue!) with the bad diet (v common with ND kids and in no way your fault btw!) could constipation be a factor in your DD's unhappiness and anger? It might be worth a GP trip to see about that, because it's so common and causes a lot of pain and therefore violence for lots of kids.
More than anything, hold fast to your love for your kids and your husband. You'll get through this phase and it will get better. You're doing so well - making the one on one time for your younger child is so important. Thinking of you in solidarity x

Things improved for us immeasurably when we removed DS from school. PDA is a nervous system disability, and at the moment, your DD is constantly activated into 'fight' by the demands of conventional schooling.

When I look back at our experience with school, I am amazed we kept at it as long as we did. It was so damaging.

She is in crisis, so you are in crisis.

'At Peace Parents' (Casey Ehrlich) and Kristy Forbes are both wonderful sources of online support for PDA families.

SENCo here in a special school. I am sorry things are so, so difficult at the moment.

1. Get an EHCP in place from the school.
2. Start looking at special schools that can meet need. Having the right school placement will massively benefit you all. I totally understand why you can’t remove her for your own mental health so push this on her current school. Make them process the EHCP and support you with applying for special schools.
3. Get an Early Help referral through school. It can be scary thinking about Early Help and possible Social Worker involvement but they can really help - especially with things like funding for PA hours and respite care for your eldest.

Op, do not remove her from school. From you prior thread, she was just as disordered over summer holidays. There are three other people in your house to think of. You also need to think of what her future looks like if she is pulled from school.

What do you do when she hits or bites you?

Huge sympathies, my friend’s little boy has this diagnosis and it’s so hard. My child doesn’t have a PDA diagnosis but has some traits (he was an angel at school so it took us to age 8 to get an ASD diagnosis) and his behaviour was awful between about 5 and 7. Calmed down a lot physically from 7.

I don’t know where you are in the country but for peer support it might be worth looking at charities - e.g. in Hertfordshire there is Space, which provides a lot of advice in terms of how to access support from council, DLA, EHCNA, etc. There may also be an SEN advisory service you can access via your council, and IPSEA and SENDIASS will be able to support with an EHCNA.

What support, if any, does she get in school?

I agree it would be worth trying the meds. As others have said, she’s so dysregulated at the moment it would be worth trying anything that might help.

Please come back whenever you want to chat, it can be very isolating with a child like this and there are lots of people here who “get it”.

Autism with PDA is a tough diagnosis. Honestly from experience the first priority is for you as parents to really understand and get behind the reasons for the behaviour. Have you looked at www.pdasociety.org.uk? Their resources are so useful and if you can get your head around the PANDA approach and implement it it can be a game changer in every aspect, including food. Low blood sugar and poor nutrition won’t be helping, would suggest daily Nutrigen sprinkles in a drink to address vitamin deficit. Lack of iron can reduce appetite. From what you’ve said school won’t be willing to be consistent with approaches you implement and it sounds as though dealing with that is pouring petrol on the flames for your daughter. She needs to be in a school with an ASD resource base who would be more likely to support her particular needs than mainstream. I feel for your despair and exhaustion but she is overwhelmed and in a vicious cycle with her behaviour. PANDA could help break it.