Dd being assessed I need help

[supercali77]

My dd (8) has always been different to other children of the same age. Colicky till 5 mo. Didnt like hugs, i still hug her from behind, can't emotionally regulate without a lot of help still, meltdowns, rigid thinking. I asked for help early on and was told...just sensitive. Get to P1 and the school placed her in the nurture room bevause she had difficulty in social situations at school. P2 and p3 were up and down due to covid and being home. P4 and sensory issues have become really problematic. There are 6 items of clothing she will tolerate, 3 of them are her school uniform. Won't remove socks, a certain type and length. All kinds of issues with textures. She was put forward by the school to cahms for assesment. Had initial interview a year ago, she was put forward to see a clinician and still waiting.

I've been sent various parenting support info but I think she'd benefit from OT. I cant afford this privately atm, I know if she's diagnosed she can be referred but wait times here could be another year and frankly I'm concerned this is getting worse, I'm doing at home stuff from things I've read but I lack confidence. I'm not a professional and her rigidity and meltdowns have gotten worse this past year

It came to a head recently in ikea where she was walking into people, being rude when I told her to watch where she was going, I called her aside to tell her this wasn't OK and she legged it and hid. I found her and she did it twice more before I eventually found her and told her we had to leave immediately. Took her outside and lost my cool completely. Not my finest hour and I never want to repeat it, just at a total loss about how to handle these situations. I cannot get through to her, can't seem to help calm her or get her to understand when she's doing something possibly unsafe. I've sort of realised we probably need to avoid crowded indoor places altogether or only be there for short periods. Im not sure what else to do?

If any parent with an ND child is reading this, do you have any tips while we await assesment? Anything you do which is different to typical parenting approaches which you find better with your child?

Just to say I hear you and it can't be easy and I would have lost it in ikea carpark too.
I guess I'd be reading and researching as much as I could, hassling the services as much as is reasonable and just be kind to yourself! This isn't your fault, you're doing really well and things will improve over time x

Hi OP, I was just about to start a (hopefully ongoing) thread for parents of DC on the pathway/awaiting diagnosis. Thought it might be helpful to support each other.

I don’t blame you for losing it. I would have too.

Hi - this sounds very much like our DD, especially the running away and hiding. We’ve gone through that on many occasions and it is really terrifying.
We are also awaiting assessment for ASD and ADHD the paed team (took a year to see them) suspect both.

while we are waiting, we are trying to ‘design out’ situations that would cause this behaviour, for us, long car journeys, supermarkets, cinemas and restaurants.

Her school sound supportive which is great. Maybe seek as much advice as possible from the SENCO lead meanwhile if they are good?

I also strongly recommend Jessie Hewitson’s book on autism. As a journalist and mother of an autistic boy it is really well researched and very frank, honest and accessible.

The “Primary School Auties” thread on here is also good!

RE: dealing with those horrible incidents, such as the running off and hiding, I have little advice I’m afraid - just tonnes of sympathy.

I’d love to hear what more experienced parents have to say about this.

xx

Here is the latest thread
www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here?page=5&reply=123089453

Thanks all! God it is breaking my heart at the moment. And I feel so lost.

@freespirit333 A thread for those waiting diagnosis sounds great, let me know when you start it!

@Whatapickle78 I assume senco is the English version of cahms? I was on the phone to them last week asking how to get an OT, they said they can't refer till she's diagnosed so then I went to the GP, also no. So next I'm going to try the school nurse. I suspect you're right re designing out the situations like busy places. I just need to accept its a problem and work round it. I will get the book suggested, I've a few here given to me by a friend but they're both quite medical. I'll also look up the primary school thread, thank you!

Special Educational Needs Coordinator (SENCO) at school. I think each school has to have one? Some are really helpful, some less so. You def do not need a diagnosis to get a meeting with them and get advice

SENCo (or sometimes now SENDCo) is a teacher in school who Co-ordinates the Special Needs in the school.
SEN = Special Educational Needs
Co = Co-ordinator.

Not sure what the equivalent is in Scotland, but they are a teacher in each school.
They will (hopefully) have experience with children with other similar needs and will have some strategies to suggest, hopefully.
In England, they will also have the support from Local Authority Autism Outreach specialists (well, it gets complicated with Academies, but, that is the theory). It would be worth speaking to whoever co=ordinates all things around SEND (Special Educational Needs and Disability) in your school as they might have suggestions, they might also be aware of local things they can signpost you too.

For example, Falkirk OTs have published a great booklet for parents - let me find it for you.

Here you go

I wonder why she was walking into people OP? Did you ask her? Was it some sort of sensory thing? Did she think it was funny? Is she copying something she's seen?

I remember my son at that age (with ASD) thinking that slap stick was very funny (after seeing clowns at the circus) and that sticking his foot out so other kids tripped over it and went flying was equally funny. I had to be very clear that these two things were not the same, clowns didn't get hurt for x, y or z reasons but other children could really hurt themselves and he would get in a lot of trouble. I got him to think about times he was hurt and how that felt etc.

I think the key thing is trying to understand what is driving any behaviour - why are they doing it, what are they getting from it? Or if they are having a meltdown and totally overwhelmed then what has got them to that point? What tipped them over the edge?

I would say good sleep and eating well (if they will) are so important. Also read as much as you can and write everything down since birth that you can remember that might suggest she is ND, then add to it as you remember things. This is so helpful I think as you do forget things.

@Whatapickle78 , @UsingChangeofName thanks for explaining SENCO. I think I know who it is at the school, but I've never been told that was her title. I'll call her this week. And thank you for the booklet link as well!

@Choconut I didnt ask her, I should have, I realised after you asked the question though that she often bumps into people/objects, and it may be because she has difficulty with balance. She goes to gymnastics to try and help that (and she loves it). So it's possible it was actually just a lack of spacial awareness/balance? Rather than brusqueness. Re the meltdown/hiding. I really should have seen it coming in hindsight, we'd been to a trampoline park with a friend beforehand and she'd got agitated inside a ballpit with loads of other kids. A busy shopping centre was probably the final straw.

This has all been hugely helpful, I've always known there was an issue but often override my gut instincts on her because I think, well...its just X, it won't hurt. I also haven't kept notes, I will start doing this as it seems like I'm sleepwalking into situations that don't need to happen with more foresight.

I assumed the walking into people thing was maybe because she was wanting to walk in a particularly rigid way, like following a line of tiles on the floor or whatever and they were in her way. But it sounds like that wasn't the case.

It's tough op, don't blame you for losing your temper now and again. It's hard to keep your cool all of the time.

Op ask for this to be moved to SN. You will get loads of good advice. There are loads of links and books to read that will help you, much more than getting a diagnosis actually will. What is school doing to support. They can put most things in place pre diagnosis.

@User4873628 Tbh it might have been that, I hadn't even thought of it. Im going to try and talk to her today about things like that now the dust has settled

@Oblomov22 ah thank you, I hadn't realised before I posted that there was a special board for it. School so far have been proactive, putting her into the nurture room and putting her forward for assesment so I think I can ask them for more help while we wait

@supercali77 I am Scotland too, my DS is autistic. I am assuming from your username that you are in the North of Scotland? 😊Have a look at the National Autistic Society website, they run courses called Early Bird plus that are really helpful and open to parents whose child is on the pathway (even if no diagnosis yet). Also the Scottish government Autism Toolkit can be useful.

It's good that the school are helpful. As far as I know, once a child is on the pathway they legally have to put in support as if they have a diagnosis.

As for the IKEA situation - I have been there too. It's maybe just overwhelm. Preparation beforehand and maybe a time limit would help in the future but nothing works all the time. Be kind to yourself.

I’m currently reading a book that’s good at describing Sensory Processing Differences

its The Out of Sync Child by carol stock krabowitz

im only on about page 25 but it calls ‘Gross Motor Planning’ about having problems moving in playgrounds and busy rooms.

In terms of meltdowns my daughters are caused by a build up sometimes of small things. Often the meltdown will occur after I think we’ve had a good day because they mask so it’s very hard to anticipate.

I don’t go anywhere now with dd2 without explaining what will happen there, why we’re going, how we’re getting there. For example if it’s a supermarket trip for milk I will not buy anything else unless she says it’s ok as I realise supermarkets are bright and noisy places and she wants to get out as soon as possible. There’s very little spontaneity in my life!

in terms of emotional regulation we found the Zones of Regulation as a helpful way of discussing how dd2 felt and discussing emotions and how people feel when watching TV / reading books. To calm her down we have fidget toys, a mini trampoline and she likes drawing. I have learnt that if she starts stimming - in our case she’ll bang things with her legs - that’s a great sign that she is getting something out of her system but some signs of stimming can be very subtle. I used to be very unobservant but now I can just sense when my dds are overwhelmed and disregulated.

Have you called to chase the initial assessment? I was told it would be at least a year, but managed to get a sooner appointment when I called to chase. Its not happened yet, but in the diary for 10 months from initial telephone conversation with me for background details. It's so tough not knowing, I am sure the school think he is just not paying attention / trying hard enough. They don't see the meltdowns at home. My sympathies to you.

Enquire can help with advice. If you have seen IPSEA mentioned on here, Enquire is the Scottish version. In Scotland the member of staff with the equivalent role of the SENCO is the Principle Teacher of Support for Learning/Additional Support Needs. Sometimes called the ALNCO.

Have a look at Yvonne Newbold’s resources and Ross Greene’s The Explosive Child book.

DD doesn’t need a diagnosis to be referred to OT, what the ASD team probably meant is they couldn’t/wouldn’t refer until DD has been assessed/diagnosed, but you can ask the GP to refer or see whether you can self refer in your area. It is still worth a referral but be aware sensory OT support isn’t commissioned on the NHS in all areas.

@ponygirlcurtis Hey I have had a quick look but not seen the courses I will check it out though thank you!

@stealthninjamum thanks for the book recommendation. I can usually sense when dd is getting agitated but I'm not as capable in loud and busy environments, I also get distracted. I've always thought she didn't have classic stimming traits but im possibly very wrong. She does repeat phrases a lot...they would be the same?

@LegoGoldenDragon thanks yeah I called them last week to tell them the situation was worsening but the ultimately said the wait list is the wait list. Not very helpful.im fortunate that the school are very helpful, it is really hard when they're worse at home to communicate how bad it is

@JustKeepBuilding thank you for the book recommendation, after someone mentioned senco above I realised who the equivalent is at dds school, have tried to get hold of her last week but she was off so will try again when the strike is off tomorrow. Re the OT I called the gp last week in an attempt to get her referred for it through them and they said no. Theres no point, they won't take the referral

@supercali77 I think repeating phrases can be stimming ie done to regulate themselves. Dd2 used to do this loads, I think it’s called echolalia. I used to find it really annoying and never know whether to ignore it or to politely ask her to stop but now I see it as her way of telling me there’s a problem so a good thing. Of course, I can’t always work out what the problem is!

It is hard sometimes to see these things - you’ll learn. Dd1 will play with her hands under the table or wave her legs under the table. I am better at judging by her face what’s going on, sadly no one else is so when she’s stressed I speak for her and her dad (my exh) thinks I’m just being controlling.

Persevere with getting an OT referral as you are being fobbed off. Waiting for the ASD assessment and potential diagnosis isn’t required.

@stealthninjamum Ah yeah, my dds dad (my ex) knows better as well, and despite finding her difficult thinks it's just a case of firmer rules, and her being 'fussy'

@JustKeepBuilding I'll try again, they did seem adamant on the call that without a clinician assigned they could offer me nothing