Meltdowns

[Loveanewsponge]

Does anybody have any tips, my daughter is 8 and has autism/ ADHD and is non-verbal, everytime she doesn't get what she wants she has a huge meltdown. I've tried using alternative phrasing, distracting her with an activity and used visual aids. We have a now and next board too which she likes to use. Majority of the time its food shes requesting, she eats plenty but I have to draw the line for repetitive snacks, treats and meals. She doesn't understand that she is full but at the same time I cant have her eating to excess because of weight gain, overeating and also I dont want it becoming a habit that she will gain what she wants everytime, whenever she wants and it becoming the norm for her or becoming food led. Her meltdowns are extremely intense, she has taken to kicking holes in the walls, using her elbows, head, anything she can. She will throw t.v's off the wall, push her younger sister over, throw things and scream and hit herself. I barely have any furniture left, shes even pulled down the curtains to the point the wall has come away with the poles and beams. I will be grateful for anything I can look into and try to help her, thank you

Does she go to a special school? Have you spoken to staff about strategies that work in school?
Has her behaviour become more challenging recently? Research shows that autistic girls can reach puberty earlier. Don’t want to add to your worries but something to think about.

Has she had a sensory OT assessment? Some sensory integration strategies might help her.
Does she have a swing or trampoline at home?
A safe space to go when she’s feeling overwhelmed might help a tent area or a curtained area under a bed.

The eating is a difficult one as Interoception difficulties mean that she may not be aware of being full. Kelly Mahler has lots of online resources and books on this area.
Does chewing items help at all? Could she have a snack box each day and once they are gone that’s it for the day? Symbols might help if she responds to that e.g. a certain amount of symbols for items and no more requests once gone.

I’d look on your LA SEN local offer for activities, support groups, SEN holiday provision, parent programmes etc. Is there any respite available locally or family support ?
I hope that you can get some help and support soon.

Hi, thank you for the response. She goes to a resource based school and is in the special school section there. I will definitely ask them for strategies that work in school, I would say her behaviour is more challenging because shes older and has gotten so much stronger. I wasn't aware puberty can start earlier, I will speak with her pediatrician with regards to this. Peads are aware that she doesn't know she is full, they haven't offered help or suggestions with this it was just noted in her appointment summary letter and I cant get an appointment after months of chasing around. She doesn't have an OT, we're on the waiting list to be assigned. We do have a trampoline in the garden but with the weather being rainy she cant use it and she destroys the indoor ones. She has taken to lying on the trampoline covering her ears so im thinking because it is closed in shes using it as a quiet space. She doesn't use her bedroom so ive converted it into a sensory room for her, im getting her a I think its a cuddle bed? Its like a large travel cot/ tent with lights and sounds, etc. I think she will benefit from that even if just used as a quiet space. I will look into Kelly Mahler. And the snack box is something I have being strongly thinking about, ill give it a go and see how it goes. I have family support and fornrespite she will stay at my mom and dad's house for a couple/ few nights. She likes to put herself in tight enclosed spaces, by any chance do you have a suggestion for something I can purchase to aid this? She squeezes herself at the side of my fridge and seems to be comfortable with the idea of being stuck and snug. Thank you so much for all the advice and suggestion and I will definitely take it all on board🙂

Sounds like you are already trying things. Glad you have some family support.
Not all OTs are qualified in sensory integration so worth checking.
A weighted blanket or lap cushion might help.
This article has some ideas

https://www.autismparentingmagazine.com/autism-deep-pressure-therapy/?srsltid=AU7gw4WaS4R5WWvlMBAT99uVAY4D8RwjMuvfkYKKDV6e3IVabO417KG7

Don’t know if you can get funding for one of these?

https://www.safespaces.co.uk/

Yeah its just a bugger when things that used to work dont work anymore so your back to square one. I will definitely look into the OT and sensory integration. We have a weighted blanket, weighted teddies, ive seen some wrist bands that im going to get to give a try because she likes to put her arms into the handles of the kitchen cupboards and her legs in the bannisters on the stairs so hopefully they'll be useful and im also getting a blanket which is like a fitted sheet which I cant remember the name of but its for compression. I will look into the beds and spaces, I did find a sensory tunnel yesterday for sensory compression on Amazon its £137 something so hopefully that will also help. Thank you for the recommendations, youve been most helpful

It sounds like you need an early review of DD’s EHCP. OT should be included in there. Then you don’t need to sit on the waiting list.

As well as a sensory OT assessment, you need a home OT assessment. This can help to look at aids, adaptations and equipment to make the house better meet DD’s needs. For example, you can get screens/boxes so DD can’t reach/damage the TV. If needed, you can get Perspex screens over the windows with remote control blinds behind.

You could try a bodysok. More expensive but you can get steamroller (similar to what you get in soft play) that some like the feeling of being squeezing through.

As well as OT, does DD receive SALT?

Have you had social care assessments? A carer’s assessment for you and an assessment by the children with disabilities team for DD.

Do you think DD is in the right school, or do you think she needs more than a resource provision?

For your other DC, have a look at Sibs and your local young carer’s service.

Hi, thank you for your response. Im new to the EHCP, shes not long had a review and the school did the referral for OT but im still waiting. I have a support worker who is helping to push things through but ive only just heard from the person who messaged on the thread last yesterday about sensory OT so ive informed the support worker who said she would look into it. I have saw the body socks and the roller thing online, I will try the body sock, the roller is in my basket. She doesn't recieve SALT through school and shes managing really well with it. I had feedback to say she has good potential for communication. I've brought her an aac, so hopefully this should help her a lot too. I haven't had the children with disabilities team, I think the school is doing her really good, shes just started her second year and came from mainstream and the progress shes made is amazing. The mainstream was trying to mimic resource base without the title and they was awful. I think its just the sensory side of things and the home OT would be good to have. I will look into sibs, I have two older children too (12 and 10), they're really good with her and are always offering to help with things and do things for me, I've been looking into things for their consoles to keep safe as shes broken their current ones. Thank you for your help and suggestions I will go look into them now🙂

Im new to the EHCP, shes not long had a review and the school did the referral for OT but im still waiting.

It would help you to read IPSEA and SOSSEN’s websites and the SENCOP to begin to understand SEN law and the EHCP system. This isn’t how it works. If DD needs OT, it should be in F of the EHCP and a normal referral isn’t needed. Do you still have the right of appeal following the annual review?

She doesn't recieve SALT through school

This is another reason why the EHCP needs amending. DD needs SALT. You should haven’t to buy equipment/tech, it needs to be in the EHCP.

I haven't had the children with disabilities team

On their website, Contact has model letters you can use for social care assessments.

I will lookinto them, the way its been portrayed to me is i read what they write in the EHCP draft and so I can see what's wrote and am happy with it and give a brief description of how she is at home and send it in. Spellcheck changed my sentence and I didnt notice, I meant she does receive SALT through school. But with regards to the aac device I was told for them to approve her for one provided I had to provide proof which meant buying an apple device only and also the software because I have to prove she will be a successful candidate for one. The softwares vary in price, one being £500 and something pounds and one being £230 or a £30 per month subscription. The most expensive one was the one recommended to me, this was all said by the SALT therapist from her school, though i said to my husband if i buy that its then pointless getting one provided as its a one off payment so i think ill go with the £30 subscription because id be annoyed if I spent that much money for them to accept her not long after. If they dont accept her onto their scheme ill happily pay for the more expensive one. Its just ridiculous the amount things cost to be able to support for SEND, the prices are diabolical!

the way its been portrayed to me is i read what they write in the EHCP draft and so I can see what's wrote and am happy with it and give a brief description of how she is at home and send it in.

The AR process should be as follows:

1. Updated advice and information must be circulated at least 2 weeks prior to the AR meeting.
2. Then you have the AR meeting.
3. Within 2 weeks of the AR meeting, a report must be circulated.
4. Within 4 weeks of the AR meeting, the LA must inform you if they propose to amend or not. If they are, they must send the amendment notice/draft at the same time and you must be given at least 15 days to comment on the amendments and state your preferred placement. If they don’t intend to amend and inform you they are going to maintain as is, you get the right of appeal at this point.
5. Then if the LA is going to amend, they must finalise within 8 weeks of sending the proposed amendments, so max of 12 weeks from the AR meeting. Then you get the right of appeal.

But with regards to the aac device I was told for them to approve her for one provided I had to provide proof which meant buying an apple device only and also the software because I have to prove she will be a successful candidate for one. this was all said by the SALT therapist from her school

You were misled. If the provision is required, the provision needs to be in the EHCP. Then the LA is responsible for funding it. You don’t have to pay for it.