Exhausted! Extremely demand avoidant ASD child - yet ABA seems to help - how to keep going?

[Bananasinpyjamas1]

I'm just totally exhausted. The thought of months more of this is daunting. Any advice?

I am doing a mix of child led and me led ABA with my 3 year old, severe ASD, lots of issues. Totally demand avoidant in the extreme. Have been for a few months and so pleased to see how much he seems to have helped, language mostly. But it's such a struggle.

I ignore his stimming, he can do that all he likes, keep his sensory issues in mind etc. Basically try to give him security and space and only concentrate on essentials. Try make his world safe but tiny steps to bring communication out.

I just find keeping this up too much but even stopping for 4 days while I had a break seemed to totally regress him. We haven't money for a tutor.

I used to do the tutoring when DD was little (mainly to keep cost down) but I ran soon out of steam.

do you get DLA? I ended up using it for a tutor to come for 4-5 hours a week. gave me a break and helped Dd's learning.

do you have a consultant/supervisor to oversee the programme or are you doing it all on your own?

Likewise I did some to start with but was relieved to hand ut over to somrone with more energy. We trained up a couple of local mums to be tutors so werent paying massive rates. Is this a possibility? If you live in a uni town you might be able to find a student?

We have an ABA programme for our 3yo son who has severe ASD and severe speech and language delay. His baseline levels were very low when we started, and he has progressed enormously, but he is still on average 18 months delayed (eg in language he is about 2 years delayed, but he is now, as a result of ABA, on target with puzzles).

I am not a tutor (I work and we have another child too), but I do maintain the behaviour programme outside of his ABA sessions. For example, our strategy is to ignore screaming, so if DS screams and shouts, I do not give eye contact, will not cuddle him despite him asking etc until the screaming and shouting stops. Even when we take a break from ABA (we had a week off over Easter, which was lovely), I still do that. Would this help you do you think?

As an aside, there is a charity near us that offers help to lower income families for ABA programmes. I like it is called Caudwell. I don't know anything more than that, sorry, just that it exists. Do you have something similar local to you?

I'd love to hand over the programme, or even have an additional worker. I don't want to be a 'martyr' to the cause, my family tell me to 'look after myself'. But if I stop then I'll only have a fustrated child who cannot function very well.

Thanks so much for replies. Makes me feel a whole lot better!

I'm still awaiting assessment formally, so not sure whether I can apply for DLA? Although I've had an Educational Psychologist, OT and SLT diagnosis and ADOS paid privately as it was taking so long and my child falling far behind.

WellTidy - yes my son is also about 18 months delayed, although I think he is cognitively also racing ahead, which is something. From doing no puzzles to 20 piece ones, no matching to lots of matching.

I did take a break over Easter - 4 days and have the odd break with him if I think he needs it too. However, over Easter it was quite marked the change in him, he went into his own world again completely. I do try and be consistent with his behaviours, but that is sometimes the first to go if I'm knackered. However, he screams when we try and do anything that is not completely what he is doing, even taking an interest in his 'lining up' can provoke him to scream. So unfortunately it is more like I have to get through a level of his barriers to work with him. It is getting less in some ways, then other behaviours will appear.

Coffee I am not overseen by a supervisor. Which is not good practise I know. I video some sessions, regularly review them with my partner and a friend who is a consultant psychologist. I would like to save and get someone in soon, if I had the money that is the first thing I would do, as it is a bit 'ad hoc'. Although I also keep written records and have an 'assistant' student come in once a week for a couple of hours.

I don't think you need a diagnosis for dla. We didn't. You just need to be really clear about their needs and you have reports to back that up anyway.

You mentioned your child is very demand advoidant. It's there a chance they have pathological demand avoidance? Would this affect how the aba is delivered? Just a thought.

I think Caldwell do give funds for ABA, other charities too on aba4all Facebook page.
I found it exhausting to keep going as tutors ourselves. We did a year while waiting for a statement and going to tribunal and I was burnt out.
I'd suggest applying for EHCP now so you can try and get council pick up cost of a proper programme. We had to appeal twice to get DS assessed and then to get ABA named but at least it meant there was an end in sight.
You can now ask for a personal budget in EHCP so can ask the council what provision for Sen it would make for your child and then ask for that as a budget for ABA.
We applied before we had a diagnosis the process takes so long (our council forces anyone wanting aba to appeal) there is little point waiting.

We just wait DS out and don't react to his difficult behaviours - but massively praise and reward when does what we ask. We've found that has got a lot better as he has got older. It's super hard to be consistent when you are doing ABA on your own. It's hard knowing what helps but being too knackered to see it through.

You should have enough to apply for DLA and can then get carers allowance too if get middle or high rate - use Cerebra DLA guide.

Some families have managed to get family members or volunteers (eg uni students) to help out but that wasn't an option for us.

You can also ask social care do an assessment for short break / respite and use that as a budget to employ tutor - but it can be hard to get social care to agree you need support for a 3 year old. We get 4 hours a week social care direct payments so DS gets access leisure activities and we get time alone with his brothers to do stuff. We employ a ABA tutor as his carer.

We paid for supervision only and it did help having someone come in 2 hours week to set us straight. We used DLA (& my parents helped us out a bit as they felt helpless so giving us a bit of money for a tutor a few hours a week made them feel they were doing something for DS).

banana, DLA is based on need. you don't need a dx and you seem to have a lot of evidence anyways and apply. You should really get it. getting DLA usually means that your tax credits (if you qualify) go up as well (as you will then get the disability element as well). If he gets at least middle rate DLA and you don't work or earn less than £110/week, you also qualify for Carer's allowance (£62/week). So,all in all, getting DLA, extra tax credits and Carer's allowance should really give you a significant financial boost. hopefully you can use some of it towards ABA (tutors and supervision).

Google DLA cerebra guide. massive help in completing this bastard of a form and request a form from the DWP straight away.

if you call them, they send you a form and you have 6 weeks to complete the form and the DLA award will be backdated to the day of the phonecall. if it takes longer than 6 weeks, award will start on the day they received the form.

HTH.

This is all SO useful, many thanks again coffee agnes and soap.

Finances would very much help, I spent mine on getting my son diagnosed fairly comprehensively but privately just to be sure what the baseline and info was before diving in.

Although none particularly said pathological demand avoidance, but he really seems to be very unable to take any kind of attention, let alone direction. That is one of the reasons I am still working with him, as he seems to trust me and will do things for me that he won't do for anyone else.

He did have an ABA, OT and SLT do some initial assessments but they found it extremely hard to get any attention without him being very stressed out. My student is a good one and nearly completed her Masters in Behavioural Interventions and she also cannot even get my son to sit down with her.

Agnes - We just wait DS out and don't react to his difficult behaviours - but massively praise and reward when does what we ask. We've found that has got a lot better as he has got older. - I do hope that he will get better as he gets older. He certainly screams less if anyone even says 'Hello'!

Praise also works, but I don't even need to give much he just seems to know when he has progressed a bit and the look of satisfaction from him is brilliant. It's just heartbreaking to take him through learning it, bit by bit, I feel like I am climbing a mountain each little step of the way. However, this is possibly a fraction of how difficult it must feel for him.

Bananas We got DLA for our DS before diagnosis. He was 3.2 when we started receiving it, and we will get it for 2 years before we have to re-apply. He is 3.11 now.

The Cerebra guide was incredibly useful to me in completing the application. It took me about 8 hours to write it, and I did it over 3 evenings. It was exhausting. And also very emotional, as the application focuses on what the person cannot do and finds difficult and accommodations that must be made. I made the application before we started ABA and it really opened my eyes to just how impacted DS' and our lives were. I also googled DLA and mumsnet and applications to see what advice had previously been given on these boards. I found that very helpful too. We get middle rate, with no mobility element, which works out at about £40/week. It doesn't go anywhere near paying for DS' ABA programme or his GF diet, but it helps.

If you do apply, call up to ask them to post you the form. Then, if you return the form within 6 weeks of them sending it, and are successful, the payments are backdated to when you asked for the form.

I take my hat off to you and the time you personally are putting in. Our children sound very similar in terms of age and difficulties. When we started ABA, DS' baseline levels were incredibly low. He didn't score at all on lots of areas. It is just incredible for us to now see how he has taken to puzzles (he would have thrown a three piece peg board puzzle at you before starting ABA) and completes a 16 piece jigsaw, then looks to do another jigsaw as his reinforcer.

I know how heartbreaking it is to see how everything is broken down and also backwards chained, when you then see other children pick up things so naturally. And of course, they continue to develop apace whilst DS continues to play catch up.

Thanks, your child does sound similar. Mine had zero in many areas of development and very, very low communication. And I thought he was mild! It was a little heartbreaking to see how much we were compensating and how far behind he still is. Yet he really has tried so hard and achieved a lot.

I just worry that I haven't got it in me, I'm already flagging. Yet to help my son you can't really be half hearted, I'll just do things wrong and his behaviours will worsen.