Does it get any better

[fruitsalad87]

Morning, looking for some advice or words of comfort really.

We have just had ADOS / ADIR for DD(6). We are awaiting the report but feedback from assessors suggests ASD (with PDA profile) and also ADHD.

She is high functioning / masking extremely well in school and all other areas (with grandparents / friends / clubs etc), but my god home life is a completely different kettle of fish.

She wakes at 5 am and from dawn to dusk (bedtime can be anytime past 10) if we are not giving her are 121 undivided attention we are having catastrophic meltdowns. She is attacking Dd(4), kicking us as hard as she can in the face / stomach, scratching our faces, spitting at us, and screaming pretty much none stop. She is waking DD(4) who has just started reception numerous times a night by either physically running into her room to scream at her if we leave her for a second, or just general screaming. Things seem to be escalating and the meltdowns seem to be getting bigger, she has started throwing large heavy objects at us.

If we are having her undivided attention she seems to be able to regulate and can sit and play nicely and is so sweet but it’s just not possible to do this all of the time.

DH works away 4 days a week, I’m self employed and work around the school run so if I’m not working I’m caring for the girls.

A lot of the anger is focused at DH when he is here so anytime he is spending with her is miserable, she says very hurtful things to him (she wants him to die, she hates him etc) and I can see this is affecting him and worrying he is depressed.

Because she isn’t going to bed till gone ten now and I can’t leave her to colour / play on her own I am getting zero down time, if DH is home at the weekend and he takes over which he is trying his best to the behaviour just escalated further and she will scream my name over and over again.

I’m so so worried about DD(4) as she is being screamed at hearing screaming none stop at the moment. We know we need to throw all the parenting NT kids books out of the window and we are trying our best to stay calm at all times but how do we get through this? I am reading / researching as much as I can. Following PDA accounts / I’ve listened to the explosive child etc Will it get any better us is this just what life is going to be like now. It feels like we’re on eggshells all the time.

Sorry some poor punctuation in there.

My first guess is that it's not about what us happening at school, but about what is happening at school, clubs, etc. If she's masking there it will take a lot out of her. Can you use explosive child drilling techniques to find out what might be a problem for her at school and see if something can be done there?

Have a look at the coke bottle effect. Coping ‘fine’ at school and exploding at home isn’t uncommon. It doesn’t mean the problems are at home.

What support is DD receiving at school?

Does DD take anything to aid sleep? If not, it is worth asking about melatonin. If she already takes melatonin or another medication, ask to try something else.

Some people find Yvonne Newbold’s resources helpful.

For DD2, it is worth contacting your local young carers group.

It's like someone with a shit job and a bullying boss who comes home and argues with their spouse over nothing. It's not the marriage that's causing the problems.

That sounds really tough OP, especially dealing with so much by yourself.

As others have said, you need to examine her life outside of the home and find ways to make it easier for her. What support are school offering? Have you met with the SENCO? What clubs does she do? Can you reduce or eliminate them? Etc. etc.

She needs support to reduce the need to mask and while she is masking she likely needs significant downtime to recover from the effort that it takes.

Don’t take what she does or says personally. It’s not nice but it’s not about you and she doesn’t mean it. She is not coping with life at the moment and this is the only way she can express it.

@SalmonWellington that's a really good way of looking at it, thanks for this. I will put this to DH.

@YellowRosesWithRedTips she doesn't at the moment, I've asked for a referral to paeds for help with sleep but has been a good few months since that went through. When (and if) we get the diagnosis I will go back to the GPs to ask about melatonin, hoping this will help with her mood in general as she is clearly exhausted.

@openupmyeagereyes thank you, SENCO have started introducing movement breaks for her. Once I get the report I will go back in and speak to them again. I think it's completely that the exhaustion of masking all day, it must be so tough for her. We definitely saw an improvement over the summer holidays when we had some down time so I think school is definitely where the problem lies.

Chase up the referral now, you don’t need to wait for a diagnosis and most GPs won’t initiate treatment. Alternatively, whoever has assessed for ASD/ADHD may prescribe.

Support in schools is based on needs, not diagnosis. The school should be providing more support now rather than waiting for a diagnosis. Speak to the SENCO again.

Hi Fruitsalad,

You need to go back to whoever has done the ADHD assessment and ask for medication for her. My daughter was diagnosed with ADHD at age 6 and we started her on medication straight away. A lot of the behaviour that you are having is ADHD related - impulsiveness, hyperactivity etc and medication will help enormously. She will be started on stimulant medication which lasts from 8 to 10 hours depending on the type. However, as it's stimulant based it has to wear off so that she can sleep. This means that you will still have the behaviour to deal with in the evening which will be of no help to you but good for school. Consequently ask about the possibility of adding in a non stimulant medication which works over a 24 hour period. The ADHD doctor may not prescribe the non stimulant because of her age but do ask about it. My daughter is on Elvanse ( now having to change to something else due to supply problems) and this is a stimulant. She also takes Intuniv which is an non stimulant and lasts for about 20/22 hours but with careful timing both meds work over 24 hours and so behaviour is now much better in the evening. Intuniv is not as good in terms of concentration as the Elvanse hence why she still takes it. The aggression could be due to her ASD/PDA and the release of anxiety due to masking.My daughter shows the same type of behaviour but she has also been diagnosed with ODD (oppositional defiant disorder) which is linked to ADHD. If she has this (I know she has been diagnosed with PDA) but if it is actually ODD the ADHD medication will make a huge difference to that as well.

Once you have all the assessments and diagnoses consider applying for an EHCP for her which will ensure she gets the right help at school. Also don't be afraid to keep school updated with what you are dealing with at home - they will be able to send a referral into social services - early help - who will be able to give you all as a family support. Keep you you her child's school updated with what you are dealing with too.

Sending hugs as I know just how difficult dealing with all this is
Xx

That should read - keep your younger child's school updated with what is happening at home and the effect of her older sister's behaviour on her. They will be able to offer her some support in school. Also apply for DLA for your daughter and you will be entitled to carers allowance - but that is taxable. DLA isn't dependent on income.

Best wishes xx

One other thing Fruitsalad, I have found that removing all demands on my daughter at home has really helped. So if she is calm when sat in front of the TV/on her iPad then let her do it all evening if necessary. If trying to force her to do homework causes behaviour challenges then don't do any homework. If she doesn't want to eat at the table but prefers to eat watching the TV then let her. By removing all demands will help to keep her behaviour from exploding and will make your life so much easier. Xx

@Cheekychop thanks so much for all of this, it's really helpful. I've been told that they are unlikely to prescribe any medication because of her age and because it can be an appetite suppressant? Do you think it's likely they will prescribe?

I hadn't even considered ASD before speaking to the assessors as we have ADHD in the family so I had assumed that was what we were dealing with so interesting you have said this.

That's a great idea RE DD2 I dont know why I didn't think to do this will speak to her teachers after the half term.

Do you know what would happen with social services intervention?

Thanks again for all your advice

PDA can cause those impulsive restless behaviours too if needs are not being met. Look at the PANDA model in th4 PDA Society, very useful. Show it to school as well. Allowing her somenlevel of choice throughout the school day should reduce her anxiety and help he4 to regulate so she's not on the point of meltdown when she gets home. Good luck with it all. Find coping strategies that work for her and let her do them (e.g. DS mostly games when he gets home from school as he needs that time to regulate or goes on the trampoline if he needs that movement time).

Social care assessments (a carer’s assessment for you and an assessment via the disabled children’s team for DD1) can result in additional support such as direct payments for a PA.

My daughter was 6 years old when we started her on ADHD medication - so your daughter isn't too young. We had her diagnosed privately because her behaviour was so challenging we just couldn't wait. She started on a medication called equasym XL because at the time she couldn't swallow tablets and with equasym you can pull apart the tablet - I used to sprinkle the contents onto a spoonful of yogurt which she could eat. Meant it didn't last a full 8hours. Once she could swallow tablets she moved onto concerta XL. So she isn't too young for medication so don't let them go you off - you and she is in desperate need of it - for your home life but also for school. How is your daughter supposed to learn if she can't concentrate on sit still?

The medication can cause suppress appetite but there are ways round this. Once the stimulant medication is out of your system it's gone. This means it will only suppress appetite while it is effective. So give her a good breakfast before she takes it and a good dinner in the evening when the stimulant medication has worn off. You can also not give it to her at the weekend or during school holidays so that she puts on weight. Whilst she is on the medication she will be monitored frequently (every 6 months) to ensure weight, height and blood pressure all ok. My daughter has been on this medication for over 10 years and it's never affected her appetite.

The non stimulant medication -intuniv - is different as you can't just stop taking that - have to be weaned off it. So my advice would be to start with the stimulant medication and see how she goes. But know that as she gets older and if evenings are still really bad, Intuniv is something you can try. My daughter has been on Intuniv for about 4years now - and it has really helped with the ADHD/ODD behaviour in the evening and first thing in the morning as the stimulant medication takes about 45mins to kick in. My daughter's behaviour is still challenging but that is mainly due to ASD and other stuff.

It's not easy dealing with ADHD - it places huge stress on everyone else in the family. So please don't let the Doctors fob you off. Xx

Once you have the ADHD under control both you and school will be able to address the ASD. I my opinion speech and language therapy (SaLT) is essential for any child with ASD. In fact before we had the EHCP in place we paid for SaLT sessions using our daughter's DLA payment. Once the ADHD is controlled the therapist will be able to assess the extent of her social communication/interaction and put a plan in place to address these issues. Also as your daughter will be able to concentrate she will be able to learn from the sessions too. Also children with ASD also tend to have sensory issues which can lead them to feeling overwhelmed and can cause behavioural difficulties. Occupational therapy (OT) can really help with this too. So consider, once ADHD under control, having her assessed by both SaLT and OT.

Best wishes xxx

One of the reasons why you need to keep your younger child's school updated with what you are dealing with at home is because if she physically hurts your younger child, school may think that you have done it. So please keep both schools fully informed - that way they can support you all.

Feel free to PM me xxx

Sorry to keep doing multiple posts - but when notifying school send an email to the headmaster detailing everything you are dealing with and the extent of the challenging behaviour. Ask for the email to be put on each of your children's file . Do this as well as speaking to class teachers as from experience what you tell class teachers will either be forgotten or fail to be put on file - or both. This can lead to problems later on. Xx

@ElizabethBennetsBoots have you seen any improvement since you've worked out what helps to regulate him? We're really struggling to find an activity that helps. We've tried colouring / TV / playing with toys / reading / the park / trampoline and it doesn't really seem to help much.

@ElizabethBennetsBoots thank you for this advice I will look it up!

@Cheekychop thanks so much for this, this is all so helpful and I really appreciate it. There are definitely sensory issues which I haven't picked up on previously. During the assesment the assessor was subtly making comments about some of her behaviours which I had never noticed before, it just feels like a bit of a mind field trying to work out what is causing her distress etc. I think there is a lot that we can work on when we get the report that might make things easier for her.

@fruitsalad87 well it depends what you mean by improvement. I mean, he's autistic and I highly suspect me and his dad are too and my dad. So, no amount of regulationcis going to make him neurotypical. If you mean in terms of how he can learn well and interact with the world, then yes it has helped, but it's on his terms. So our normal might look different (he spent yesterday writing codes based on python and roman numerals mixed) but he has friends and is happy and learning. He'll still get anxious about change but we can talk more about it as he gets older. I think just keep trying things that might regulate. Trampoline really helps here but then sometimes it overstimulates, so then weighted blankets help to bring down the hyperness. I think it's probably trial and error!

You can try the book The out of sync child to help identify sensory issues and give you activities to support.

Just giving a quick update we've had the outcome today and DD has been diagnosed with mild ASD (not PDA) but we've been told she also has ADHD which is masking her ASD symptoms. Feeling really positive with the outcome and the suggestions people have made, hoping this will be a turning point for us as we learn to understand her needs better.