ASD - Have You Made Any Changes to Your Daily Lifestyle which have helped your Child?

[Blossom4538]

I’m talking from small strategies or approaches to huge life changes or changes in circumstance.

So many small changes, but the biggest effect is to listen to DS more, so if he says he's had enough of an outing and wants to go, we go. In the past we would have pressured/ encouraged him to keep going with the activity as we'd paid admission or had a long drive, but it always ended in meltdowns, so we've accepted it's better to have 2 nice hours then a full stressful day. We also don't pressure him to do things kids are 'meant to' enjoy, and insted let him choose what he actually wants to do (within reason).

Big life change is that I've given up work, though I appreciate I'm lucky to be in a position to do that. It just wasn't sustainable for me to stay up half the night with him, work all day then give him the level of attention he needs after school without turning into snappy cow. Now I can do any jobs while he's out, or just rest and have some time off, then I have the capacity to give him 100% when he's home.

Also if you can, find other parents whose kids have autism or other SEN to spend time with. The parents at the school gate will never be able to relate to your life, and you'll never feel part of there's (eg. When you meet and all the other parents talk and drink coffee whilst their kids play, and your the only one who needs to shadow). I much prefer meeting with other SEN parents, where everyone's in the same boat, and no one judges.

Accessing social services for an assessment, enabling Us to find carers from Ds SS through direct payments -
Only accessible through Social services assessments.
Trampoline special needs clubs helped in yen younger years, now my sons 13 -respite has been a godsend.

The main big thing was really working hard to understand his sensory issues at a deeper level than avoid itchy sock. Me getting this must have made his life so much nicer as he didnt get pushed into so many meltdowns.

Thank you @Onionpatch, @Lesley25 and @Sprogonthetyne for the suggestions (and of course @Blossom4538 for the question!) - I'm really struggling with DTS1(6) at the moment and any strategies are gratefully received. He was diagnosed as borderline ASD two years ago but not 'bad' enough to need extra help, however he's just becoming so challenging - when he's concentrating he's fine, but his attention span is so small compared to other kids and he really struggles with fine motor skills. One of my friends posted on social media the other day about how she couldn't stand kids that don't eat nicely at the table - all her kids sit properly, use cutlery properly etc - it really upset me as I thought is this all people see of DTS1? That he's 'naughty' because he finds it hard to sit still for any length of time and use a knife and fork properly? He can be such a sweet, loving little boy - when he's not having enormous meltdowns

(Oh and him needing extra attention then makes DTS2 play up - we had an awful morning this morning with the two of them squabbling non stop!)

My best ways of coping are either to get DTS1 absorbed in something he really enjoys - at the moment Lego, Pokemon or Top Trumps - or if he's being very hard work, I often let him have a long bubble bath as that will keep him occupied for a while. We have a big stock of cheap bubble bath for this reason! Plus his sleep is so important, there's a direct correlation between his length/ quality of sleep and his attention span. Quite often it can take him over an hour to get to sleep but I resist the temptation to put him to bed later as it takes him that long whatever time we start the bedtime routine, and he never gets up any later!

I'm really finding

I forgot to mention that a lifestyle
Choice I made for myself when ds was small was to come off all social media, tbf Facebook was the only one around then, but I knew early on it wouldn’t be good for my mental health, I just couldn’t help feeling sad with the he comparisons etc. and I knew I couldn’t tear my eyes away. So the easiest thing was to come away from that.
Also only associate myself with like minded mums or friends (not many) that didn’t define me as a mum with a child with additional needs.

We make a diary on a piece of A4 paper for 4 weeks at a time and stick it on the kitchen wall. DC can add things and cross out events when they're done.
Stick to activities DC enjoys even if they're solitary.
Encourage (bravery) when he's tried something he finds hard, really praise when school report positively, tell DC goodnight love you even when it's been a hard day.

Lots of small changes and routines that DS likes. E.g. always eating lunch at 12 on weekends/holidays, not pressuring to try new foods, no or very few direct demands, picking battles, and like a pp said listening to DS so when he says he's bored or it's too bust etc we change activity or leave a party or something even if DH and I are enjoying it. So our lives are much more child centred than most parents, I imagine, but this way it helps DS to cope and so makes all our lives happier! I also know how much he loves getting something from the shop, for example, so if he asks for an ice cream or sweets he can gave one, no big deal, and we don't link that as a reward for other behaviours etc. He has a star chart and gets a Saturday gift if he gets all his stars, those are linked, but that is an obvious link and that is its own thing.
We prepare him a lot for changes, talk through holiday plans and involve him, and make it obvious that we love him unconditionally for who he is.
I've also gone part time in a more local job so I can be there more for him and take away the stress of wraparound care. And I've also given up trying to be like other parents, especially in terms of discipline, as DS is pda so being authoritative tends to have the opposite effect! MN sen boards have been an amazing source of support for me personally as as parent walking a different path and learning to parent in a much more cooperative way than traditional parenting suggests.

Much more aware of DS's sensory needs and that impacts our parenting decisions. Particularly how under-sensitive his vestibular and proprioceptive senses are . So, Covid aside, we make time every day for outdoor exercise to help him with sensory regulation. There's either the park or a walk every day on all weathers - even Christmas Day.

Also, in terms of noise have Headphones for going outside - especially hand-dryers in public toilets. We often go to indoor public spaces either first thing in the morning or last thing in the day to when it's quieter.

All family photos are taken outdoors or on phone to avoid camera flashes.

There are SEND chew necklaces all over the house....

We tend to work to the 'on-day, off-day rule at weekends. If one day is busy then the other one has to be very calm and quiet to avoid overload.

@Lesley25 I completely agree that 'comparison is the thief of joy' with regard to social media! I hope your new friends are lovely and supportive

That's a great idea about the calendar @Blomme, thank you - we do have a family calendar but I don't think he takes much notice of it. I might sign back up to Twinkl and print out one that's far more visual, which would help him to explain more what he likes/ doesn't like as well.

@MagratLancre (love the username, by the way!) I know PIL feel we are 'pandering' to DTS1 when we make allowances for him but really it's only trying to make sure he doesn't have an enormous meltdown
again ... equally, FIL can be very judgemental when DTS1 doesn't 'behave' (especially at mealtimes!) so it's difficult to know what he expects us to do!

Oh yes, DTS1 has to have at least two hours' exercise a day @RestingStitchFace, otherwise he's frankly unbearable! And outside is definitely better than inside - he tends to get overwhelmed by soft play, disco lights etc.

Another few awful nights' sleep for DTS1 and he's edging closer to meltdown territory he just cannot settle himself at bedtime, he can easily take an hour more than DTS2 to get to sleep, even when thoroughly exhausted. Then the next day he has massive bags under his eyes and is constantly on the verge of tantrums... I'm looking into melatonin at the moment as plenty of sleep makes such a difference to him. If anyone has experience of using it that would be much appreciated!

We’re at the beginning of all this, but actually I realise we’ve made changes for about 4 years to accommodate the autism without really knowing that’s what it was.

We arrive early for everything so he gets used to the space and gradually sees other people arrive (eg at school, birthday parties, etc).

We follow routines as much as possible and try to warn him if anything will be different to normal.

We bought plates with little compartments so food doesn’t touch each other.

Biggest change is that my long-held plans to go back to work once he started school is now on hold, luckily we can afford for me to stay home.

Oh yes @GoldenGorilla, the compartment plates are great!! DTS1 is slightly better now and will just refuse to eat food he doesn't like, rather than throwing a major strop if it's even on his plate...

The tiredness is such a factor for us, DTS1 will get himself so worked up at bedtime over very minor things, then won't/ can't get to sleep the next morning he'll have completely forgotten about it but will be on the verge of a meltdown with tiredness. Aaarrgghhh.

The Twinkl and Widgit websites were great when he needed a lot of visual cues - I may sign back up to help him with his calendar reading!

Lots of routine/charts etc. Always having a fidget toy in my bag. Look out for quiet/asd sessions at trampoline parks and softplay. Go to groups, meet up with other SEN families. Some places offer a free carers ticket. Use that to bring an extra person with you to help on days out.

I definitely agree with everyone's points on being mindful of their sensory needs because being more considerate of that will surely be a kinder way of managing their day. My DS is only 3 so we're really early in this journey, plus he's too young to articulate such nuanced ideas as feeling overwhelmed or needing to burn off some energy so there's still a whole lot of guesswork involved.

Key things like not having the TV or radio droning on all day long when maybe a bit of silence might be helpful for him. It's REALLY clear how much a good run around outside multiple times a day does him. Also helping him with activities that appeal to his sensory seeking needs (we got a night light that changes colours on touch, or just lift him up to switch the ceiling light on and off for a bit so he can show you the light and dark).

After that, it's making sure we set aside a good amount of 1:1 time doing stuff he enjoys together. I feel like he has a mini burst of new language, concentration and play skills every weekend (when he's off for 3 days in a row), and takes a little step back when he goes to nursery for a few days in a row, and I suspect the 1:1 attention is what's really helping him learn.

@Scratchybaby you have some lovely ideas for your DS and it sounds like you're giving him plenty of attention too. DTS1 loved (and still does) things like a very bubbly bath and quiet time playing with Lego from that age, we were/ are lucky enough to have a local group for children with SEN just to play with Lego, and I feel that really helped his concentration.

And a big yes to plenty of activities outside - soft play not so much for my DS as he tended to find it too overwhelming and send him into a meltdown after a while - but anything like a park/ woods/ activity trail was great for him. I think he would have enjoyed something like Tumble Tots too but I just couldn't do it on my own with twins, tried it once and the helpers were not helpful at all

Thank you for the kind words @ClaraTheImpossibleGirl I'm trying but really stumbling around trying to guess! The only thing I'm (sort of) clear on is that he seems quite sensory seeking across a range of areas and when I can't pinpoint exactly what he may be needing, a good run around to explore the outdoors in a safe place outside will hopefully tick a number of boxes.

I'm hoping it isn't too many years before he can tell me about what makes him happy/uncomfortable/stressed so I can understand better. Are you able to do this at all with your DTS1 at 6yrs old? Can a 6 yo communicate such complicated feelings or even identify them? Sorry for the stupid question, my DS is my first and I am still clueless in so many ways!

Hi @Scratchybaby - yes, DTS1 can tell me those kind of things now, when he's paying enough attention that is - when he was your DS's age he had terrible glue ear and couldn't hear much, which didn't help! At preschool they did a lot of work on the 'zones of regulation' with all the children and that helped too (they still do it at school), could you try that with him?

One thing he did (and still does) love is maps, even when he couldn't read at all! Helped make trips to parks slightly more exciting, if he was looking for a big tree/ a park bench/ the red flowers etc

@ClaraTheImpossibleGirl That map idea is great! I think it would take some teaching for him to get the concept but not too much - I will definitely give that a go :D

They don't do that 'zones of regulation' stuff at his current nursery but I will look into it. I'm aware of the fact of it I think, I just need to learn how to do it in a way that's effective. Thank you! These ideas are so helpful!

Hi op, 5yo dd is undiagnosed but from the support we've had so far, all professionals believe she is neuro diverse.

We've found some success with everyday living through the following:

• Allowing more time to get ready - dd's anxiety peaks when she feels rushed. This means earlier to bed to allow her to wake earlier refreshed.

• Removing choice. We've learned that, unlike the books tell you re parenting neurotypical kids, choice can cause anxiety. Removing choice has helped in many situations.

• Routine, routine, routine. Explaining that routines can sometimes be different in different scenarios. E.g. your weekend routine is this, your school day routine is this. Keeping some clear structure to weekends has helped.

• Sometimes just responding with 'because those are the rules' when she queries why she has to do something a certain way. We try not to overcomplicate with convoluted reasoning. She does better with clear, concise directions.

• Frame 'requests' as expectations. The more direct our approach with her, the better she responds. Never give an inkling of uncertainty - and if we are uncertain, explain that we can't be clearer because we don't yet know.

• Prepare her for what is to come and take nothing for granted, including letting her know that sometimes things don't go to plan and that if x happens insteads, we may have to change tack and that might mean y. The things that neuro typical people take for granted need a little more thought/ explanation.