Any help in the meantime while child is waiting for assessment?

[ofwarren]

I'm autistic myself and my 7 year old son is waiting for assessment.

A bit of background, he has a liver transplant which was done at 4 months old.

He has started having these extreme tantrum/meltdowns. Today for example, me, DH, DS6 and DS7 went to play football in the park. DS7 decided that his brother wasn't playing the way he wanted him to and started shouting at him and then lay on the floor wailing. His brother then decided he wanted to go home so I took him while DS7 stayed with DH. He managed to calm him down and they came back about 30 minutes after us.

Once home, it was obvious DS7 was pissed off still and he was mimicking his brother and pacing angrily. I took his brother upstairs out of the way while he finished a sandwich.

DS7 cane upstairs and started crying and getting angry outside the bedroom door and refused to go down to eat his own sandwich. He lay on the floor rolling around screaming and then started hyperventilating and went into a full blown panic attack. I opened the door and he threw a toy into his brothers face. DH had to physically lift DS7 up off the top of the stairs as he couldn't breathe properly due to the panic attack, while he's shouting "I'm scared, in scared".

The outbursts all start with him not getting his own way then they turn into panic attacks where he says he's scared and everything is too bright. There is no talking to him, he screams till his throat hurts and trashes the room. He's violent and punches things.

My question is, is there any intervention we can have while he's on the waiting list? Is this something Camhs can help us with?

Thanks

A referral to CAMHS may help, but realistically you will be lucky to get an appointment any time soon, that’s if you get a referral accepted. In some areas you can self refer to OT and SALT which may help and be quicker. Does DS’s medical team have access to psychological support?

Are school providing any support? Have you considered applying for an EHCNA if he doesn’t already have an EHCP? The benefit of an EHCNA is it can include a psychiatrist &/or clinical psychologist assessment without sitting on the waiting lists and an EHCP can include ongoing support without waiting.

You can ask for social care assessments too - a carer’s assessment for you and an assessment via the disabled children’s team for DS.

For your younger DS do you have a Young Carers group locally? And have you been in contact with Sibs?

Have you applied for DLA?

@Imitatingdory

A referral to CAMHS may help, but realistically you will be lucky to get an appointment any time soon, that’s if you get a referral accepted. In some areas you can self refer to OT and SALT which may help and be quicker. Does DS’s medical team have access to psychological support?

Are school providing any support? Have you considered applying for an EHCNA if he doesn’t already have an EHCP? The benefit of an EHCNA is it can include a psychiatrist &/or clinical psychologist assessment without sitting on the waiting lists and an EHCP can include ongoing support without waiting.

You can ask for social care assessments too - a carer’s assessment for you and an assessment via the disabled children’s team for DS.

For your younger DS do you have a Young Carers group locally? And have you been in contact with Sibs?

Have you applied for DLA?

It's a possibility that his liver team may have someone he can talk to. They definitely do for over 12s, not sure about for his age though. We do get access to their specialist social worker too if we need. We are at clinic in 2 weeks so I'll mention the issues then.

School wise, he's currently home educated till his vaccine. Hes CEV due to his transplant and medication. Funnily enough, he's totally fine when he's at school.

We've never had anything from young carers, mainly because we've all been shielding over the pandemic. They went back to school last spring/summer and then back to home ed from this January.

He has middle rate DLA due to the transplant and his seizures that he has.

Google “emotional regulation” and you may find some helpful ideas. It’s about teaching people to identify what emotional state they are in, 1 being chilled … 5 rage induced panic attack. The important ones to identify are 2-3-4 and to learn when you’re moving from one to another, and find strategies to step down a level.

It’s not a quick fix - it’s about building self awareness over time.

I try and model regulation for my dc by talking about my own stress, and taking a time out if I need it, or doing breathing exercises. Also I model going from 1 (chilled) to 2 (let’s get stuff done).

Some people link colours to each number and use a visual chart - for ds I got him to come up with a Pokémon to represent different emotional states.

Have a think about how your ds calms and self regulates (think about the middle of the 1-5 range not the extremes) - exercise, jumping on trampolines, swings (anything rhythmic that has a deep muscle feel is usually calming - whereas chasing games and tickling would be stimulating). Ds will retreat into a book or use the iPad to calm himself. He also has a safe, private space (down the side of his bed in a pile of teddies) for when he needs to be alone.

I’m only tipping the main points - it’s worth googling for more information. There are lots of ideas and resources available,

Hope that helps a bit.

I missed the last response to me, thank you it's really helpful.

The situation is getting unbearable now. He's having rage panic attacks at least 3 times a week now, if not e every day. Today he refused to come in from playing basketball and literally lay on the floor screaming and then started screaming "im scared" and hyperventilating and running away from us. It's so hard to deal with because you end up feeling like just giving into everything he wants so he doesn't have a panic attack.

I think I'll have to ring the doctor. The neighbours are going to think we are harming him or something, as he shouts "go away, I'm scared, please please" 😥

The way he shouts too, honestly it's like he's possessed. Full on growling.

As soon as he begins to get upset, agree with him. Not cave into him, just totally acknowledge his feelings. E.g. 'It's so upsetting isn't it, when we want someone to play the way we expect and then they play differently? That has upset you a lot hasn't it?'
Then let him say more and mirror it back to him. E.g. if he says, 'I thought my brother would let me score a goal but he didn't', you might say, 'You really wanted to score a goal, didn't you? You made lots of very good tries and you feel like you deserved to score a goal.'

He might get upset again then and say, 'Yes I did' and you have to de-escalate if that happens, with stuff like, 'I suppose from brother's point of view, he was trying his best to be a good goalie - and good goalies aren't supposed to let goals in - and he didn't realise that you would enjoy the game much more if you got to score.' But did you notice when he fell over? That was because your shoot was so good, he couldn;t catch it easily.'

Etc etc. just try to de-escalate by appearing to consider everything very carefully and slowly and as if it has all just occurred to you.

It is time consuming. But it beats tantrums. I used this technique a lot with autistic DS2 and he really didn't tantrum often. (Though one of the few times he did was football related!)

the other trick is to chat with them about how to self soothe. E.g. 'It feels so horrible getting this upset doesn't it? I hate feeling this upset. You deserve to have some nice soothing calm things to help you feel better so you don't have to get this upset. What do you find cosy and soothing? A blanket? A toy? A drink of water or milk?

Encourage him to self soothe and give him loads of respect when he does.

That all sounds incredibly difficult @ofwarren It must be horrendous for you (and your family) to witness and try and deal with and so distressing for the son who is having the tantrums/meltdowns/panic attacks.

I'm sorry I cannot offer any advice about how to manage these episodes. I've heard of camhs (now called CYPMHS) providing help in these types of situations though. According to the NHS website, it depends on where you live what services are available, so again, the postcode lottery applies. There is a link within the link below for you to input your postcode.

It would be a good idea to contact your GP to request they look into resources who may be able to assist, and if you explain just how bad things are, it may speed up the assessment process?

Also, would you consider filming your son so that you can present hard evidence? It's often the case that medical professionals don't see the extent of the behaviour and subsequent distress as the child can be on their best behaviour at the appointment.

www.nhs.uk/nhs-services/mental-health-services/mental-health-services-for-young-people/children-young-people-mental-health-services

I've just tried him under my weighted blanket and he wore headphones and listened to a kids anxiety meditation thing and he nearly fell asleep. I'm going to get him his own as my blanket is too heavy for him really. Was nice to see him decompress a bit though.

When he gets in a rage he runs up the stairs and has a meltdown on top of the stairs which is so dangerous. When he's too far gone, you can't move him and I'm scared he will fall down. I'm considering a baby gate but I'm concerned he will rip it off. He absolutely trashes the room he is in, until the panic attack starts and he is just lay on the floor or hiding hyperventilating.

Stickers seem to work sometimes but I need to try and do some of the things suggested I this post.
I'll definitely try to film him. I have to try and be convert though because he will go absolutely berserk if he sees.

Thanks for all your advice

Even if you are EHE you can still apply for an EHCNA. The assessment process will really help you and others understand DS’s needs better. I’m not saying you don’t understand them now, but a good assessment process with several disciplines involved often highlights hidden needs and even if you understand DS’s needs now often others don’t.

If the LA agree to issue the resulting EHCP can include all the support DS needs (SALT, OT, MH therapies, emotional literacy support…). If DS cannot attend school at the moment you can receive provision at home or virtually without you EHE, and then the EHCP is also in place for when/if DS does return to school.