What does your neurotypical 9yo do at the weekend?

[VoltaireMittyDream]

I'm in one of my phases where I'm trying to work out whether I am justified in feeling so completely burnt out, as my 9yo with SEN needs my constant undivided attention and can't do much for himself.

Can't tolerate being looked after by anyone but me or DH. We take it in turns to give one another time out but it is fucking relentless.

The weekend comes and I just want to cry.

If your DC is 9, and neurotypical, what do they do at the weekend? Can they play independently? Can they dress themselves? Toilet independently? Get themselves a drink of water or a snack when they need one? Can they tolerate bring dropped off at playdates or activities, or do they need you there all the time?

I just need a reality check - this has been my life for so long that I have no idea what it's like for NT kids the same age as mine.

Sometimes I see other mums with bags of energy even with 2 or 3 kids and full-time jobs, and I feel like an absolute loser for being able to work so little, and finding life so tough.

But then they'll casually mention something about their kids doing chores (!) or homework (!!) or being in after school care / holiday club or taking tapdancing lessons or something - and I remember they are in a parallel parenting universe where kids don't remain at toddler levels of functioning for years and years.

Hugs, that sounds exhausting.

Mine are all ND but not in the same way. Sure at 9 they had hobbies and activities they could be dropped off at. Played with each other, would read or watch favourite DVDs. Go to friend’s houses or have friends over.

They went to school, grandparents would very occasionally babysit.

Both my nt and nd sons could do all those things at 9. So you are by no means a loser, you have been dealt a seriously tough hand and your child has significant additional needs.

Are you claiming higher rate dla? Perhaps it's time to start planning how you can use some of that for some respite?

My DD is 7. She on a waitlist for autism assessment. The weekends feel unbearable sometimes. She cannot play independently. The only thing she can do independently is watch something. She mainly only wants me. She will no longer go to her grandparents due to it being too boring. When she gets bored, which is immediately, she descends into utter chaos and things are broken. She used to have a drama class at the weekend but after one too many refusals to attend and meltdowns in the class we cancelled that. We may have an outing planned but she may refuse last minute. She has a very difficult time putting clothes on - she has the physical skills to put them on herself but never would - so this can mean we never get out there door. She can't tidy up and leaves chaos in her wake. She can use the toilet but mostly will want company. She can be violent often. She is smart to talk to as well so it's all quite strange and baffling. I too question what things are supposed to look like, and my sanity. It feels like noone can understand what we go through. Solidarity from me.

It feels validating to hear this. Thank you.

We are not in the UK at the moment & not eligible for any benefits. Though he has these huge issues with daily functioning, he's also bright with no intellectual disabilities (though no ability to do 'creative' projects where you make up stories and pictures from your imagination, which makes most of primary school a nightmare for him). And because he doesn't act out at school - but is instead shut down and almost completely silent - nobody here really believes he's autistic, they just see a sullen, lazy kid who spends a lot of time on screens and will only eat ultra processed food. Which all contributes to that loser mum feeling.

The toileting and hygiene stuff terrifies me as we get closer to puberty.

He won't engage with OT or any other therapies. It is hard.

No you are not doing anything wrong - that sounds exhausting.

My NT 9 year old plays out with friends, goes to his activities, watches TV, makes himself food and drink, has friends over and plays upstairs with them, showers and dresses himself. So I have time and headspace to myself.

My friends autistic 10 year old doesn't do anything like that, so she is always 'on' and it's very tiring. She is amazing, as you are, but she didn't expect to be parenting so actively and intensely 10 years on, and it takes a toll.

You're not doing anything wrong, it sounds tough going and you're allowed to feel sad/tired/ overwhelmed. I hope you can find some time to look after yourself x

I feel this in my bones. Solidarity to you, too. Your DD sounds a bit like my DS, who was eventually diagnosed with PDA and ADHD. I also suspect dyspraxia - he has very hypermobile joints and lowish muscle tone, and struggles with fine and gross motor skills. He can't tie shoes or do up buttons.

ADHD meds helped a lot with the meltdowns.

My DC can watch things, and play video games, but needs me to do it with him. I have spent sooooo many hours playing Roblox.

I see posts on here sometimes that say 'your DC need to step up and help out! At 5 years old your DS should be tidying his toys away and setting the table for dinner' and I can't tell whether these are just trolls making shit up to be provocative, or this really is what other kids are able to do.

My DC can't sit at a table, let alone set out plates and cutlery.

NT 9yo boy here and yes he does everything himself. I’m sorry I’ve read your posts and I’m not sure if that’s helpful to hear or not. What you’re doing sounds really hard and you are an amazing mum.

If your DC is 9, and neurotypical, what do they do at the weekend? Can they play independently? Can they dress themselves? Toilet independently? Get themselves a drink of water or a snack when they need one? Can they tolerate bring dropped off at playdates or activities, or do they need you there all the time?

My youngest is 9 (spring birthday, year 5). She has been able to do all of those things for at least five years, with the exception of "get a drink", because she's small and struggles to reach the taps - she can do that now though. She walks to and from school with her friend(s), and has a key to let herself into the house when she gets home. She can be relied upon to go to the park with friends, wear a watch and check the time regularly, and come home at the planned time. She makes her own breakfast every day, and her own lunch at weekends.

I hope that's useful information to you, and not upsetting to hear. Caring for a high-needs child is a huge amount of work ❤️

It is helpful, thank you. I think because my DS's needs are not visible to people around us, I sometimes forget how extremely different our family life is from other people's.

My NT* ds10 can do all of those things but prefers an adult around. He can be left at home. He has quite severe anxiety around school and struggles with that. He is fine to be dropped at others houses for play dates and has been since around age 7. He doesn’t do extra curriculars apart from swimming. He does go to that willingly mostly but would still prefer me in the water with him I think! he does go to holiday clubs reluctantly.

• because I think he might have some mild SEN

I assume the neurotypical children can do everything with learning and training.

Yes, I suppose I just feel like I lost track of what was developmentally ‘typical’ around the time my DC got his first diagnosis at age 4, so I don’t have much idea of what NT kids will have learnt to do independently by 9.

(Most of DC’s friends are ND, and vary hugely in terms of development & independence, so I have no solid benchmarks)

By 9 my NT dd could walk to/from school independently without me, be left in the house for short periods by herself, make herself a snack or cook a simple meal, be dropped off alone at a club or friends house for several hours, have a sleepover or Cub camp without me there, be looked after by a teenage neighbour babysitter, do craft or baking independently, watch a film by herself in her room, do basic chores like cut the lawn or load the dishwasher. She didn’t do these things 100 percent consistently but I was confident that she was able and safe and didn’t need constant supervision.

My ds who has adhd, is in mainstream school and reasonably mildly affected is absolutely miles away from being able to do any of that at 8 and a half.

when mine we’re that age we did a lot of time outside - as long as the weather wasn’t terrible. I would bribe them with smarties on our walks. And always something fun at the end - a playpark, sledding, ice cream.
I was also told a ND child is a minimum of 18 months younger than their biological age. That helped a bit.

Yes my nine year old can

• dress themselves
• play independently
• tidy up afterwards
• help lay the table for a meal and clear up
• i have taught him and his much older brother some basic chores. They can help with recycling, laundry and emptying the dishwasher. Eg with laundry if I fold them he can put his ones away in the correct drawer.
• he can pour milk out for his own cereal or make his own toast if needed. (He doesn’t need to but as the second child wanted to do things his big brother can do).

He needs reminders- hang your coat up, put your shoes away. Don’t forget to do X but he does have independence. As it happens he is disabled but it is a mild physical disability as a result of a birth injury which impacts mainly his gross motor skills.

I am sorry you are not getting the support you need for your son and that people are judgemental.

This puts it all in to perspective. My DS has no intellectual difficulties but is profoundly impacted by his neurodiversity.

He's about a month away from nine and still needs support with toileting, dressing, etc. He is able to be on screens independently but can't be left alone as he isn't safe - he climbs, tries to make food with sharp knives, etc. I still have to actively supervise him in the bath.

He can get himself food and drinks but for example will try to use the kettle, use a whole bottle of ketchup, use neat squash in a cup, etc if left to his own devices.

Then I wonder why I'm signed off from work with depression 😂

Sympathies. Its' hard just to get by if you are exhausted. This type of table mat worked well for DS when he was learning to set the table. www.amazon.co.uk/Placemats-Montessori-Silicone-Placemat-Reusable/dp/B0CPSX48P7/ref=asc_df_B0CPSX48P7?mcid=adc8b77b62c533458c8f7e4ab31f64fa&tag=googshopuk-21&linkCode=df0&hvadid=710751753322&hvpos=&hvnetw=g&hvrand=3975349596077243102&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9189915&hvtargid=pla-2361527518230&hvocijid=3975349596077243102-B0CPSX48P7-&hvexpln=0&gad_source=1&th=1. We used plastic/melamine instead of glass/china, but it was hepful in establishing a routine - and the repetition of daily practice helped him a lot.

It’s so hard to explain to people - and to yourself - isn’t it?

Things I used to get a lot from teachers / well-meaning family members were ‘there is no reason he shouldn’t be able to do X or Y’, because he has no physical disabilities and a normal IQ, and seems like a ‘normal’ kid who’s just a bit sullen.

We still don’t really have a vocabulary for this kind of nervous system disability & functional impairment, or ways to help people understand it conceptually.

Ds is only just ten. He cant make food himself as hes diabetic and needs us to give him insulin but he will grab himself a carb free snack or a drink. He can go out by himself to play out but he cant have food around friends houses (again insulin). Usually we have his friends come to ours him & his best friend meet up once or twice a month on a weekend. He can play independently etc.
my NT eldest is 14 and i only just started to leave him on his own for a few hours a few months ago hes still not allowed to go out on his own (not that he wants to anyway - still teaching him how to use/pay at the local shop with supoort!) all kids vary.

She mostly joins in with what my younger ND child can tolerate… so most things we go to are aimed at SEN children and families.

At 9 she could do a lot of what you mention but comparison is the thief of joy OP.

My youngest will never be able to go on a play date but there’s lots of stuff he can enjoy doing. I do appreciate it’s exhausting though.

Our son does have a very high level of need but we have managed to find some people able to provide 121 care. We pay through the nose for it but it’s worth it for him and us.

Sending strength!

Thank you for this insight into your world OP. In terms of my own experience of neuro diverse children I haven't been close to any like your son with very high needs but without an intellectual disability. Do you feel he is making progress on his own timeline? Does he have an awareness of his differences (e.g. in terms of his need for support with things that other children his age wouldn't?)

I think it sounds exhausting and you are doing well at a very tough job. Toddlers are exceptionally tiring, the being "on" all the time - and if you're still doing that 9 years on I think you have every reason to find working and parenting especially challenging - don't compare yourself to parents of NT children!

My eldest is 8 and while I think NT (I say think as I've never had them assessed) is definitely on the challenging end of normal in parenting intensity, compared with peers. I have found today ahead going as we had an event at which quiet sitting was required, which was not very successful for us.

However apart from that, they have got themselves up, had a shower and dressed alone, I made breakfast but they ate and put in dishwasher, I'm not involved in toileting at all, played with sibling for a bit and fetched own water/snacks etc. I hope I'm not sounding smug - I am very far from claiming to be parenting expert - but I mean to say I have found mine hard work today, and compared to how involved you seem I can see I have had it easy really.

Def no intellectual disabilities - he was an early talker with a huge vocabulary, ahead of his cohort in school learning to read. Has some difficulty with numbers, but is still about average for his age group. Knows tons about chemistry and physics and engineering that he's learned from YouTube science channels.

He knows he has ADHD, and he knows that he finds some things difficult that other people don't. But we have tried all sorts of different therapies - OT, recreational therapy, etc - and he won't engage. He can sense that people are trying to get him to be different, and he's having none of it.

What HAS been moderately helpful has been some ND YouTube creators who make simple, funny, animated videos that put words to the kind of experiences he has.

He is sociable - hugely so when he is in an environment with people who share his interests - and has a few close friends, who can stand in for us to meet his need for constant undivided attention.

However, the friends he attracts tend to be intensely obsessive/possessive ND kids who will respond angrily or vindictively if he talks to anyone else. As a result, he has developed an idea that he is only allowed to have one friend at a time, which we are trying to gently challenge.

He is making some progress. It's huge that he attends school - when he was at nursery we were not at all sure he'd be able to, as he would refuse to get in the pushchair, fight his way out of car seats, cling on to the inside of the car and refuse to get out, run off when we approached the door, etc. Every single day. Nursery always said 'he's fine when he's here! No trouble at all!' and made out we were neurotic parents. But every day when we got him home there would be hours of violent meltdowns, night terrors, etc.

(Turns out he didn't want to go as they had a rule where you had to try everything on your plate at mealtimes, which was unbearable for a kid with ARFID - but he couldn't articulate this to us until years later)

Re: toileting - he toilet trained himself with no trouble, around age 3, but he cannot wipe his own bum. We have tried everything - all different textures of wet and dry toilet paper. He won't consider a bidet as he is worried about water going up his bum. He will sit on the toilet for hours on end rather than wipe himself.

He also accidentally got locked into a bathroom at school once when he was 4 and since then will only use our toilet at home, preferably with us in there with him.

He can now tolerate having his teeth brushed every day, which we weren't sure would ever happen.

After years of negotiations and trying different things he will tolerate taking a gummy multivitamin (but only a certain brand and I live in fear of the day they change their packaging) and a transdermal iron patch to make up for nutritional deficiencies caused by his ARFID.

He has lots of sensory stuff that impacts food and hygiene - huge issues with texture and smells, hates getting his head wet, experiences cold as unbearable physical pain, so can't stand the feeling of getting out of the bath. Hates the feeling of the toothbrush on his gums. Hates having his hair cut but also finds brushing his hair intolerably painful (so we just use clippers every 6-8 months or so and give him a number 1 all over).

He's got PDA - which is quite a different profile from what people normally think of as autism. He experiences anything that is not a direct expression of his conscious will as a threat he must resist. So, hunger, thirst, sleep, needing the toilet etc, all feels like a threat. He can eat only if it's one of his 6 safe foods, if we bring it to him wherever he is, if we set it down without saying anything about it and retreat quickly. Otherwise he genuinely will not eat. Hunger, or being expected to eat, or even the fact of its being mealtime, feels to him like something external is forcing its agenda on him.

When he's in an environment that really does force its agenda on him - like school - he completely dissociates. So he's no trouble for anyone, but completely zoned out.

The challenges we see are not visible at all at school, who just see him as a silent, unsmiling kid without much initiative. His school report this term said he 'continues to show little enthusiasm for learning' - which is so sad given how hungry he is for learning from his YouTube maker channels.

Academically, he's keeping up with what he's meant to be learning at his stage, but he just absolutely hates school and is utterly miserable. He's in a private Montessori school with tiny class sizes, no uniform, etc.

Homeschooling would not work for us as he can't be without constant (and I really do mean CONSTANT) attention and interaction from us, which we couldn't provide all day, every day, without losing our minds.

It is very hard for other people to understand when he 'looks so normal'.

My ND DD can do those things but my ND nephew can't as his needs are higher.

That sounds really hard OP. My (almost) 9YO can do all of those except shoelaces but she’s always been a bit late on fine motor stuff and we just get her velcro/buckle shoes so no big deal. Overall I’d honestly say that in terms of needs you’re describing more like an under 5. My 4.5 year old can manage snacks from packets/fruit bowl obviously not proper meal, can get a drink, do a decent enough job wiping, drop off playdates/activities are fine, he’s not that great at playing independently on his own, 15 minutes max, but plays happily with his sibling. Sorry I don’t mean that to sound twatty. But I hope that helps with some perspective because you’re being unnecessarily tough on yourself when actually it sounds you’re doing brilliantly given how hard and far from ‘typical’ things are. Please be kind to yourself.