What should I expect of my AuDHD daughter aged 9 ? (Independence, self management)

[WhatNextImScared]

I’m really struggling at the moment with the tipping point between supporting and scaffolding my autistic 9yo and pushing her towards some independence too. She is only just diagnosed ASD, on a pathway for ADHD too. Dyspraxia diagnosed a year ago.

I know every ND child is different, but can I ask what your 9yos can do for themselves or should be? I struggle to compare as not only is she ND, she’s the youngest in her school year so I’m not even comparing to a similar NT age range.

i think she should be self washing by now but she hates the shower (sensory objection) and really struggles to rinse shampoo independently in the bath.

she self dresses but can still struggle with orientation/put things on the wrong way etc without verbal cues. Often in the morning before school I will still help as we’re on a time deadline, which probably isn’t actually at all helpful. She needs to keep practicing. We are just starting trying shoe laces

She has poor visual processing so chores are a nightmare. She can’t see something right in front of her face. So I have to give endless verbal support even for the smallest thing.

Should I be expecting more of her in terms of small tasks around the house and self management? How can I support her best?

Would love examples of what you all do/did and that helped …

She has weekly SEND inclusive swimming lessons but struggles and still can’t ride a bike. I don’t know whether to keep trying or give up (on the bike). She gets cross with me trying to get her to keep trying as she feels frustrated and embarrassed .

She’s in mainstream school and meeting expectations (not exceeding) academically. She’s going into Y5 and I am deeply worried about secondary. I simply cannot imagine her being able to get there alone reliably every morning even in 2 years’ time (although i realise 9-11 is a rapidly period of maturation)

I’m not sure how helpful hearing others’ experiences will be. Some with ASD, ADHD & or DCD are more independent than you describe and others need more support with activities of daily living than you describe. It is much more about individual needs.

I have a now adult DD who is autistic. (Although for clarity she was diagnosed before the switch to encompassing all under ASD and her diagnosis is Asperger Syndrome.) was more independent at 9 than you describe. However, I have 3 teen boys with additional needs (one with complex needs although not autistic, one with AuDHD, one with ASD and lots of other co-morbidities). At 9, none of them were as independent as your DD. One of them still isn’t as independent as you describe, one about the same and one now more independent than you describe.

It isn’t uncommon for people either additional needs to find showers intolerable. DS1 thinks it is like being stabbed by needles.

It isn’t uncommon for all you g girls to need help washing their hair. Even ones without DD’s disabilities.

Has DD had an OT assessment and does she have any ongoing support.

Some never master tying laces. They don’t work for all, but have you tried adaptive laces?

For getting dressed in the morning and washing hair, some find backwards chaining helpful.

Constant prompting isn’t that unusual considering DD’s needs. How is DD with checklists? Some find checklists (with pictures if necessary) where DD can tick off steps or turn over pages as she goes helpful.

Some areas run learning to ride a bike sessions with OTs &/or physios.

You can get adult stabilisers (you can fit them to older children’s bikes too), but I appreciate DD may not want to try them.

Thank you, you’re right it’s impossible to be compare. I just find it difficult to know where I should push here and when I should be more accepting. Her personality is not forthright - she doesn’t ever seek independence for herself even where she is perfectly capable.

She has had some private OT but no ongoing support. We only just got a diagnosis, not ECHP yet although I am going to push.

Checklists isn’t something we’ve used in the home (though we do use social stories) and that does sound a good idea. She thrives on routine so working through the same checklist every day month help internalise the basic processes of getting herself ready etc

Assessments will help you understand where DD is at in terms of what to work on and what is probably too much for her right now.

From your posts, I would suggest leaving hair washing and laces for now and focusing on dressing. I would persevere with swimming. Not only is it an important skill, it can help with emotional regulation, sensory regulation, general exercise and wider motor skills.

I would look if your area has cycling classes for DC with additional needs. If you have one locally, I would get DD’s name down. If you don’t have one locally, I might put learning to ride a bike on the back burner for now if DD becomes upset. What would DD think of a trike? Can she ride a scooter?

You could perhaps look at horse riding for another physical activity.

Thank you @inthequietofdawn- I agree that dressing is the priority. She can actually do it, but she gives up easily if it’s something she finds trickier due to her coordination issues.

She loves her scooter but bike riding is something I’d like her to keep trying at as I think she’d get a big sense of self esteem from it. A class sounds good. I’ll have a look. I’m definitely keeping her in swimming and progress is finally happening so that’s good.

we haven’t had the full assessment report back from her ASD diagnosis yet - hopefully that will be helpful.

You could use back-chaining to help with the difficult parts of dressing.

The reason I suggested a break from learning to ride a bike if you don’t have sessions aimed at those with additional needs is that if DD is frustrated and upset, continuing to learn now could put her off longer term. A break of a few months or even a year before trying again could help DD reset and regroup.

An up to date in-depth OT assessment is likely to offer more in terms of ADLs than the autism diagnosis report.

Thanks yes I will try that.

Hi OP, I've also got a daughter with SEN but I think the DCD is making a huge difference here. My daughter doesn't have that issue - in fact she is very physically adept - but she has a bunch of SEMH issues so it's more a case of if you can engineer things so she wants to do something, or she feels some peer pressure, she suddenly can. For instance, we just had another teenager staying on a language exchange who showered daily. Suddenly DD was keen on showering!

I would park the bike riding completely for the moment (can she use a scooter? That will also get her places). Bike riding is harder than people think and unless you live in a few specific bits of the country, not really a necessary one.

I think your focus should be on preparing for secondary transition. You say "push for EHCP" but are you aware you can make a parental request? You could do it this weekend. You don't have to wait and it doesn't depend on diagnosis as it's needs based.

Sorry, I mean to add that I had an interesting conversation with DD (who is 13 and about to go into year 9). She is confident, after support and practice, to use the train to get to school and can cope with train cancellations etc.

We were in central London last week and for unforseen reasons had to hang about. I pointed out she could get the train home by herself while I waited. At first she was anxious as it was an unknown route but we looked up the change, the platforms, the times etc and I put her on the first train. She did it! As we waited I told her the mantra you sometimes hear: "First I do it for you/Then I do it with you/Then you do it for yourself" and explained how that applies to train journeys. I could see the cogs whirring. Normally she doesn't listen to advice ever but I'd prefaced this with "you might want to meet X friend for shopping sometimes..." Suddenly very motivated!

Template letter 1: asking for an EHC needs assessment https://share.google/5cmpNElBSxtMSfK8K

Sorry for multiple posts. I have been thinking back to when DD was 9 and my answer would be, not very much! I mean, she could ride a bike confidently (DH loves a bike so it was easy for him to encourage her, set up nice bikes etc) but she doesn't have the co-ordination difficulties. In terms of self care and organisation, emotional regulation, academics - behind peers the same age. Very obvious in our area because a lot of parents prepare kids for selective entry tests around that age. There was no way we could have done that!

Thank you, all your posts are really helpful. I know I don’t need the school for ECHP, but now we have them on board due to diagnosis I thought it might give it more heft (but maybe it won’t).

the I do it/together/you do it and staged withdrawal is something that we are using and I do see it working in other areas. but this summer I’ve been reflecting

As your DD is four years older, is there anything you would recommend re: secondary transition? This is the bit I’m most worried about. She’s settled at primary and doing ok, albeit now with that many friends. Secondary could be really positive for her (and I think the structure will help) but I worry about her being completely overwhelmed. We are in London although I hope an ECHP will come through before next October I know I can’t guarantee it with the appeals/tribunals process etc and living in and not having total control over what school she gets into (we are not in any secure catchment) feels horrible right now

Hi OP, I have lots to say about that. If you have a read of the EHCP support thread and the linked threads, you'll see I was in a very similar position.

Take ownership of the EHCP process. Don't leave school to make the running on that.

www.mumsnet.com/talk/special_educational_needs/5484488-ehcp-support-thread-no-6?utm_campaign=thread&utm_medium=app_share

Thank you, don’t worry I will do. I am just waiting for the full report from the ASD assessment setting out needs to come back so I can attach it. At the moment we only have the DCD report and the piece of paper just confirming an ASD diagnosis, but no detail - which we need to make sure the ECHP is actually correct. That gives a bit of time to get school to provide some evidence too (hopefully).

I feel really overwhelmed by what I need to do over the next two years to get her ready and settled in the right secondary school, with the right support in place. I am self employed (and can’t afford to drop my hours or income) yet a lot of this feels like a full time job.

I wouldn’t wait for the ASD report. You can send that later. The first hurdle you need to focus on is getting agreement to assess. You don’t need to worry about having evidence to ensure the EHCP is accurate at this point. That is the point of the needs assessment.

I realise under another name I replied to you on another thread that I wouldn’t wait to speak to the new teacher and SENCO, but I am going to reiterate that and explain more about why I would urge you to request an EHCNA ASAP and why you need every day you can get.

You have 2 years until DD starts secondary.
You have 14 months before the deadline for submitting an application via the normal secondary admission process if you don’t have a finalised EHCP by then.

With a few exceptions, the EHCP process takes 20 weeks. Although LAs often think this doesn’t apply to them. You can force their hand, but this takes time. Finding someone with the capacity for a pre-action letter is becoming more and more difficult as demand is ever increasing. Even if you can write your own pre-action letter, this is often unsuccessful because LAs know you will still have to find a legal aid firm with capacity to take the case further and they know when you find a firm they will sometimes want to send their own LBA before proceeding further. LAs know all this takes time and that it kicks the can down the road.

The 20 weeks is if you don’t have to appeal. If you have to appeal, it takes much longer. SENDIST is overwhelmed. To give you an example, oral refusal to issue and content appeals being registered now are coming back with hearing dates of Spring 2028. Even after a hearing, some are finding the wait for the judgement is longer than at many times in the past. There is also no guarantee that the case will go ahead on the original hearing date given. It may be vacated and relisted because of a lack of court time or if the case isn’t ready to be heard (even when in the past a case with the same circumstances would have gone ahead). Refusal to assess appeals are quicker as vast, vast majority are heard on the papers but still months away.

At some point, the law is going to change. No-one knows exactly what changes will be made yet or exactly when, but proposals include significantly weakening appeal rights. LAs know this. Parents know this. Waiting times for appeals are lengthening.

I am going to give you an example:
-You apply 7/9 after speaking to the teacher and SENCO this coming week.
-LA agree to assess but at week 16 they refuse to issue. That would take you to 28/12. And that assumes the LA adheres to the timescales for informing you they refuse to issue, particularly give that falls in the Christmas holidays (although not a lawful excuse for breaching).
-You get a mediation certificate and submit an appeal to SENDIST on, say, 5/1/27.
-Based on the current timescales, that hearing would be listed in Summer 2028. Obviously, no-one can say exactly when, but say, early June 2028. Although it could well be later.
-You wait 2 weeks (although it could well be more) for the Order, which takes you to mid June. Your appeal is upheld.
-With a few exceptions, the LA has 11 weeks to finalise. That could well take you into September 2028. Even longer if the LA breaches the timescales.

@inthequietofdawn has covered the legal stuff brilliantly.

I'm trying to remember which thread I responded to with suggestions on practical ways to get a child ready for secondary. Hopefully I'll find it later, to save typing it out again.

Please don't worry too much. It's one of those situations where you need a long term plan, medium term plan and "what do I prioritise this week" list.

If you get this right then the secondary years will be a lot easier on everyone, so it's well worth investing time.

My experience is only one person but I applied for EHCP in October of DD's year 5 and it was issued in June of her year 6. That included a refuse to assess and refuse to issue tribunal and 2 academic years actually looks pretty fast now based on those tribunal waits @inthequietofdawn lists.

The other thing you should be researching the heck out of is suitable schools. Do not expect the LA to find you a suitable school. You need to do that yourself (and then convince them to name it).

That came as a big surprise to me!

On the plus side at least birth rates have come down a little from 3 years ago when I was doing this. It's quite a significant effect in some parts of London.

DM me if you'd like to meet for a coffee some time. I am south of the river but work north and sometimes west.

@Phineyj waits are so much longer than in the past. It is depressing. SENDIST can’t keep pace. There are some phase transfer BFI appeals from this year that won’t be heard until 2027.

Have you moved job? Sorry, @Phineyj, that is absolutely none of my business! You don’t have to answer, obviously!

No worries @inthequietofdawn I don't mind you asking! I've gone a bit "portfolio career" - I was offered some university lecturing but my school basically thought I should do it on top of my very full on (if officially 0.8 FTE) job so I have ditched them! Fortunately I very quickly found a couple more days a week teaching but I couldn't be picky about location so I am going to be spending a lot of time on the train....

Anyway @WhatNextImScared I do totally get your point about the time this SEND stuff takes. On the plus side, if you can secure the right secondary placement then the paperwork should greatly reduce.

@Phineyj I don’t know how your ex-school said that with a straight face.

If you ever fancy topping up lecturing with tutoring rather than teaching in a brick school, with your personal SEN experience, you could look at EOTAS/EOTIS/C tutoring. Not as much demand for your subject as some other subjects, but there’s certainly some. Even more possibilities if you are open to more general tutoring rather than subject specific tutoring.

Thank you, I hope you’re right! I try to remember she’s been muddling along ok so far and it was only my refusal to let it go that means she even has a diagnosis at this point, and staggeringly we live in an LA (London) that has just overhauled its processes and we got through initial referral to full diagnosis in 6 months. So I need to try to keep upbeat about all the next steps.

Thanks @inthequietofdawn - it's a good idea!

I was a bit nonplussed they saw me as so disposable, but as my very wise sister said once, it's important to get out while you still have some self-esteem.

@WhatNextImScared I can't find the post I referred to but I will come back and make some suggestions a bit later or tomorrow.