Parents of neurodivergent DC: How have you altered your parenting?

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Question for parents of DC with ASD & / or ADHD who are moderately affected (so still in mainstream education), how have you adjusted your parenting?

Such an interesting thread. I think my approach is:

1. Spend time learning - including from ND adults - and use for ideas and inspiration…
2. … But I give myself permission to accept it’s ok if their methods don’t work for us - everyone is different.
3. In the same way I try hard not to look to others- especially NT families - as a comparison. It’s always depressing and counterproductive.
4. I regularly ask myself “does it truly matter if they do x”. The majority of the time I then realise that the issue I was worried about is not important/concerning/dangerous but I was hung up on the “should” of it all. For example, I’ve learnt to not push against the limited diet as when I considered it dispassionately I realised they do eat all the food groups - there’s just no variety.
5. I try and be aware of my own state and how that can affect my reactions to them and their needs. Far easier to be patient when you aren’t one step from breakdown! This helps me reframe spending time on myself as valuable for everyone!
6. We try and anticipate triggers and factor in time for recovery into all our planning. E.g. if it’s a school trip day then no demands, only favourite foods and all screen time the evening before and after.
7. I had to work hard to get over my embarrassment at “making a fuss” and am now my child’s proactive advocate at school/medical etc - also very helpful all round was when I learned to ask for specifics rather than just vague “support”.
8. Finally I try to remember that their needs and the level of support needed will necessarily change over time as they grow up. That is both less support on stuff they will find easier to manage in future and more support on stuff you don’t even know about yet! When I start worrying about “how will they ever manage x when they are older” I try and keep in mind that I’m still thinking about the child they are now rather than who they will be when they grow older. Also useful is to remind myself of times I’ve thought this before (e.g. weaning, potty training etc) and how they did get there eventually!

Great idea for a thread. Mine are:

Try and remember the big picture and not compare DS2 to his brother or other children as a) it's not fair on him, and b) it's depressing. Try and keep in mind the small wins (eg he went into a friend's party last week without doing a runner at all due to overwhelm for the first time in 8 years, so will take that as a win).

Reduce demands and pick my battles. Try and take the long view and co-regulate as needed.

Declarative statements. I would give an unfathomable amount of money to just say things like "brush your teeth" and DS2 do it. Instead, it takes a lot of humour, planning and cajoling and it can still take up to an hour.

Try and ignore people who just don't get it. Even successful trips leave me exhausted due to the necessary helicoptering and knowing when to pull the plug. Or ignore the 'just tell him and give him a consequence'. His meltdowns are driven by anxiety and he would end up severely injuring himself if no attempts were made to calm him during episodes of non-compliance.

I learned (after lots of mistakes) to completely ignore all advice from any source that wasn't specific to ND children. It comes at you 24/7 - from relatives, teachers, fellow parents, people in the street, Everyone thinks they know how to parent your child better than you do.

Grow a massively thick skin. I have sat in a cafe giving DS sips of Ribena while I ate real food and had people loudly talk about 'some people don't deserve to be parents, that poor starving child, we should call the authorities' glaring at me, unaware that I had actually not eaten for 24 hours due to him being awake all night long, throwing up with ARFID and screaming and screaming. That I had spent five hours without break painstakingly sneaking miniscule amounts of nutritious food into his mouth so that he would swallow it without noticing as he hated the sensation of any food in his mouth and finally when I was fit to faint with exhaustion and lack of food I dared to sit down and eat a sandwich, to have this aggressive dialogue acted out for my benefit. You have to learn to shrug off that sort of thing. It happens all the time. People will often think you are a terrible parent. I look back now, on times when I thought I was failing spectacularly, and realise I was amazing - I hung in there on no sleep, no advice, learning by trial and error how to love, nurture and stablilise my child so he could flourish.

That sounds horrendous for you

Perhaps we all should get together and do a book? One hundred tales of ASD or ADHD etc

Totally agree with all the comments saying ignore the people saying 'just do this' / 'just say that to them' like it's that simple! Unhelpful, misguided and ignorant advice from those who don't get ND! And needing to have a thick skin.

The main difference, I think, is that my Overton window is in a different place from parents of NT children. re. what is and isn't acceptable behaviour.

As a result some family members think my parenting style is slack. It's not: I just have a good handle on how/when to pick my battles!

I'm a lot more patient and accommodating than I ever thought I'd be as a parent - I am neither by nature - and as with other posters, I'm heavily involved in managing DC's school bag, homework schedule etc., or it would be chaos.

At times I feel like the Lynne to my child's Alan Partridge

Ds2 is autistic and yes we have had to change our parenting. We have to be much more watchful with him than we did with ds1 when he was the same age. Ds2 has a one to one at school and essentially needs the same at home. Luckily ds1 is older and a sensible boy so does not need much supervision. We also schedule in more downtime and have come to accept that some things we did with ds1 we won't be doing with ds2. I loved taking ds1 to Christmas events for example when he was little but with ds2 there is no chance. We have to be very clear with instructions with ds2 and our house is now filled with more visuals and sensory things. He has a calming corner. Ds2 has a PDA profile so you have to accept battles have to be picked.

@freespirit333 I'll have to ask DD what worked. I think we did a number of things. Empathy and feelings work with her so there was no actual aggressive feelings towards peers. But also a lot of talking to her about other children's needs. So she hated discomfort but actual pain didn't bother her. Explaining that her rough play was like how she felt when uncomfortable. Also INSTANT removal if she did certain things. She had a habit of putting other children in headlocks. She thought it was a hug, the other children definitely didn't. "NOTHING AROUND NECKS" was a thing I thought I would never have to say as a parent but I said it a lot. And sometimes honestly. If she didn't get invited to a party (and she never got invited to parties) I would mention if there had ever been anything, "Rashid's mum mentioned rough play so you didn't get invited". With kindness and empathy but also reality. Interestingly, now she's zero tolerance with her ND friends' rough stuff. Walks away, won't engage and tells them why.

@Fivebyfive2 and @Stickycurrantbun I've joked that I should get a cross-stitch which says, "couldn't you just..." for my wall. We all need one!

@Fluffycloudsfloatinginthesky DD now jokes that hell for me is a shoe shop. And yes, for several years she lived in knock off Uggs all autumn, spring and winter. Now it's half the years Vans, half the year boots. If Vans ever fail me I might cry.

@Introvertedbuthappy the humour and cajoling! OMG the constant humour. DD went through a phase of absolutely stinking. Early puberty. I tried everything. What actually worked was her presenting her armpit, me sniffing, then doing a RADA-worthy performance of dying from the smell. Collapsing and writhing around. DD would then wash. Nothing else worked but that did. No earthly logic to it.

@Lilacdew you're a hero. I hope you know that. And restaurant people are the worst. We had some judgemental arses once when DD was small, commenting. Even the waitress told us to ignore them. It was 5pm in a restaurant with colouring FFS. And DD wasn't actually being that bad. I was livid, wanted to send them drinks as a PA fuck you. DH stopped me.

@Noras we should. Would have helped me. So much parenting advice doesn't work for ours but most of ours works for them.

I'd add to listen to those rare people who are kind and sensible and knowledgeable. Two stand out for me. One was the fierce mum who also had a child with SEN and fought with the school, and everyone else without shame or embarrassment. My first foray into talking to the school I was terrified. She stood with me "because they're scared of me Terry" and it worked. They were. The second was a mum whose DH was a wanker perfect parent and he would "just" me all the time. She once turned to him and said, "Terry does twice the parenting work for half the result" and it made me realise that the people who matter know how hard we work. If some restaurant arsehole doesn't, bollocks to them.

DD has theoretically 'moderately severe' ADHD but I also know that she is a walk in the park to parent compared to some of her peers. Low anxiety, easily managed, she will eat really well, no issues with transition, she 'fits' with me well so I don't struggle like some, she has adapted to the things she needs to. Every day was a struggle when she was smaller. No sleep (for years), constant worry, but now things are better. That's not the case for everyone so just here on this thread, well done, you're doing a great job.

@MrsTerryPratchett she could only cope with 'normal' shoes / trainers if they were at least one size too big. So if I took her to Clark's they would measure her and she would be screaming they were too tight!

I had to stop going on what size she actually was and just had to go with how they felt - she still needs them too big now really.

I actually came to realise that the times her clothes / shoes were most uncomfortable was the times she was anxious about something - that's how she let the worry out.

It's still the same in that if she explodes it's not usually about what the explosion is - there is something underlying that upsetting her.

"Does it matter?" is my usual mantra.

The answer is usually no.

E.g. He wants pasta for breakfast. Instinctive reaction is to say no. Does it matter if he has pasta for breakfast? Nope.

If anything, we are living a slower, simpler, more "in the moment" life than I anticipated and I'm grateful for that too.

This sounds odd but I know no different, I have two boys both diagnosed with autism. Highly intelligent and slightly random but it's our normal. In the younger years it became apparent my parenting was very different to most, having to pre-plan, thinking ahead, using the art of distraction when I could see one of them close to bubbling over became second nature to me. Some might say pandering to their needs 🤷🏼‍♀️ well that's what the dreadful MIL always thought (we don't see her now) and she refused to recognise their disabilities.. both very different boys with their likes and dislikes, I cook three different meals as food has always been an issue - over time things have got easier I guess but I love who they are and wouldn't have it any other way. Not your normal teenagers but we run along quite nicely. We don't do much gaming or TV in this house but love a board game evening! I never win 😆 I absolutely hate those people who consider autistic children as naughty/disruptive as I have two very well mannered boys and I'm very proud to have them.

@rockingbird interesting you’ve added on about your MIL (what a cow) as I was going to add on, how people have changed their approaches with friends and family due to their ND children? Really struggling with this at the moment, with family mainly.

Honestly, we went NC with SIL for years. Sorry.

Sorry to hear that @MrsTerryPratchett . We are nowhere near that point thankfully but it’s gotten to a tricky stage.

I have learnt to stock up on the only type of socks she will wear so that next time Amazon is out of stock I’m not panicking.

i only buy her cheap shoes because until I find the pair she will wear religiously for the next 6 months I know the expense isn’t worth it.

I’ve had to get used to my child being the one always next to the teacher and being known as a bit wild. Fortunately everyone loves her.

I had to learn to meet her on her level and it was a wholly different place to her high functioning ASD sibling.

But she’s opened up my own world to one that is very different because it is open, fun, full of creativity, and while I doubt she’ll be a high achiever academically as she lacks the concentration needed, she’s going to bulldoze her way to success on her own. I just have to try and insert appropriate guardrails.

My autistic child is the youngest of my three so I did have to learn to parent differently. I walked a line between being fair to my older two and accommodating and learning how DS3 needed life to be.

Firstly, we had to slow down. Other people have talked about this, but things that worked for my older two, such as getting home from scout camp one day and going off on family holiday the next, don’t work for DS3. He needs a decent break between the two to reset.

Secondly, adjust expectations. We are all quite musical and we joked when he was born that he was going to be our bass player. He’s not interested in learning an instrument. Equally, he finds a busy dinner table a bit much and I am happy for him to get down once he’s eaten. MIL and FIL did not do that with theirs, so they, and to a lesser extent, DH have had to learn to smile and lump it. I’m lucky in that all the grandparents adore him and are happy to learn. I have friends with less sympathetic parents.

Thirdly, I have had to expend a lot of time and money on pursuing diagnosis, not so much for autism, but in having him assessed for SPD, dyslexia and other things. Some of it has been a bit mad - we spent a year or so doing nightly exercises for retained reflexes, which I was dubious about but he enjoyed.

One of the top tips I learnt from a parenting course I did with a local autism charity was that for some autistic children, it really helps not to vary your phrasing - so for example, saying ‘can you put your shoes on?’ Followed by ‘why haven’t you put your shoes on?’ And then ‘put your shoes on! You’re going to make us late’ is giving the same information three different ways and the child will need to process each sentence to determine that. Saying, for example ‘put your shoes on, please’ theee times avoids that. Actually this tip helped everyone’s mornings.

i like Jessie Hewitson’s book How to Raise a Happy Autistic Child - good read!

It's incredibly frustrating because basically she went nuclear about our (really my) parenting during a difficult time in her life.

A few years later, my DD is doing really well and her eldest got a diagnosis (genetics, innit) and she may have seen that as life teaching her a really hard lesson about judgement. We're mostly fine now and she's very contrite but I still feel very hurt that we could have supported each other and she decided to judge instead.

Great thread. For things like trips out I’ve learnt to give him advance notice we’re going, so that he has time to come round to the idea (he loves being at home). I take a change of clothes as he gets upset if his clothes are wet or dirty.

I’ve started avoiding going out on my own with my two kids, as my son with ASD has run off and hidden a few times and it’s terrifying. If I have my youngest with me she slows me down trying to find him.

We do lots of physical play to try and burn off his energy. I see on here a lot that parents of NT kids suggest just ignoring children and they will entertain themselves, but I’ve never found this.

Timers are helpful in switching between activities or bringing them to an end, he accepts playing ending more if a timer goes off.

What exercises did you do for retained reflexes as my son and this am I’m worried about future curvature of the back? We tried to employ a private OT but could not get one so we have done whatever we could with a PT and exercises from the NHS website. The NHS OT were not that great even when delivering direct therapy.

@Noras It was quite a long time ago now, but duck to pigeon toes and back again, I think with thumbs up and down at the same time. Something called splat where they lie on the bed, push up onto feet and shoulders, arms in the air and then just collapse down.

My friend who is an NHS OT told me that she never met a child who went to the private clinic we went to who wasn’t diagnosed with retained reflexes and that if the prevalence in the general population was anywhere near what that suggested, it was a wonder that you can walk down the High St without watching everyone falling over themselves. I think ds3 enjoyed the one on one time and apparently integrated his reflexes. We stumbled into the clinic looking into their Opthalmology services as our priority, they offered and it seemed rude to say no.

Thank you for all this - so helpful

Oh god all the 'just make her' comments...! From people who have NO idea. What they don't understand is if you try making her she'll have a meltdown adn the whole process will take even longer. Like someone else said I would give anything to be able to just say 'go and brush your teeth' and for DD to do it straight away...takes an hour of cajoling.

What we have learnt is that techniques in parenting books won't work, and you have to work out for yourself what helps your child.

Mine needs to be completely left alone during meltdowns. We've learnt not to try and make her wear a coat or jumper or hat or gloves or scarf. She wears uggs in autumn/ winter and plimsolls (no socks) in summer. She can just about tolerate school shoes for the school day but they come off the second she is in the door. I've learnt not to expect her to wear most of the clothes we buy, even if she has chosen them. I've learnt not to try and make her eat anything outside of the limited foods she accepts. She sometimes tries new things from the table but I serve it up in dishes and she helps herself to what she wants. I've learnt not to give her time pressure eg 'if you don't get your shoes on we will be late for school' as that just stresses her out more and makes her even more late. We've had to learn to be very patient as nothing we do will hurry her up. We've learnt to give up on expecting her to get as much sleep as the 'average' child of her age. She does not need much sleep, nothing is going to change that. We've learnt that the only way she will sleep is if one of us is in there with her, so we've given up on trying to get her to go to sleep by herself. We've learnt to give her warnings of any transitions and to outline any plans for anything we are doing in advance (and pre-warn her of any changes). We've definitely learnt to pick our battles. And to ignore parenting advice.

Advocating for DS within education/health. Weekly, sometimes daily. I am not a fan of conflict, however I have had to get over that as I have often been left with little option. I am learning calm assertiveness.

See also; rejection of gas lighting attempts from schools/LA.

Educating myself on multiple conditions, who the experts are, what the therapy options are.

Spare everything. Even at 14 years old. A change bag is always to hand when leaving the house.

Regularly getting up at 2-3 am to change wet beds.

Learning to co regulate when teenage DS has a meltdown.

Not too many demands at once - leads to brain circuits jamming and frustration for child and parent.

See also: not scheduling too much.

Spending time on various therapies - speech, ADD motor skills, reading, eye exercises, continence. You name it, we have some activities to assist it. DS currently being assessed for ASC so I'm sure there will be some things to add to help things like social imagination.

DH has been a rock, even becoming self-employed so he has the flexibility to do hospital trips and a 100 other things. Organising social events for DS, for example, learning about disabilities, finding allies.

I thought I'd have more than one child (before I had DS), but the one child has come with a lot of things so he is a much cherished one child!

Becoming comfortable with where DS is rather than where I though he might be - e.g. he still likes toy cars and doing dolls' hair.

Being aware of my own mental health as well as others in the family. We need to have activities to decompress and keep on an even keel.

Being at home in the SEN board of Mumsnet (the people here have regularly saved my sanity).

Despite his many challenges, DS is funny, loving and interested in lots of things.
I could not be more proud or love him more.

If you had asked me before we had DS could I cope with being a parent of a child with SEN I would have said no way.

Yet here I am, with DH, and we are giving it our best shot. Using the skills we have and growing new ones. Sometimes I need to remind myself that we are doing a pretty good job.

As are all of you.

We climb mountains daily, despite the odds.

I needed to read this thread so much this evening.

My mother in her impassioned way gasping for air to my comment that someone had watched our 6 yo at school and had noticed several neurodivergent indications (prob ASD) & agreed he is really struggling - "this is absolutely TRAGIC; he spent the weekend with me a normal, confident, happy little boy and he returns home and he's full of anxiety... and some neurobrain diagnosis!"

She thinks I have caused his school refusal entirely because - yes, admittedly I never actively sang the praises of school - but he actually enjoyed reception, then everything quickly bombed. Possibly because I listened with too much concern when he broke down sobbing just turned 5 saying he tries his best but he is constantly told off & can't do anything right. He clearly felt absolutely dreadful & I think that's often how he still feels. Slow processing, sensory, group social situations, misreading inputs etc, extremely sensitive. And for me one of the worst things, he doesn't have a bestie - there don't seem to be any other creative, musical deep thinkers of his ilk.

So much of what people have written here aligns with my own experiences to date, although ours is only 6.

But we are struggling a lot of the time. My husband wants to parent him as he was parented and yet, he sees the issues. I'm just relieved someone recently has observed some signs. My son and I have very good communication but I am desperately struggling in the battle around school. They are being very supportive and we're at the start of a journey, but it's bloody hard and my son is clearly finding school extremely hard-going.

I worry a lot about what we're doing - how we're parenting him around getting into school / creating 'resilience' / etc. His nerves are clearly frayed and it doesn't take much for him to go into meltdown when I accidentally raise my voice.

Did anyone change school or how was school for you?