'Snowflake' parent when actually there is undiagnosed SEN

[Bbqbeefhulahoopsarethebest]

Have many of you had to deal with being perceived as a 'difficult' or 'anxious' parent when actually your child has undiagnosed SEN. Or are there any teachers who maybe had to re-evaluate their view of a child/parent when a diagnosis was received.

Having a bit of a vent (inspired by a thread at the moment talking about 'snowflake' parents being hard work and demanding etc).

It's taken us years of meltdowns and challenges with DC at home to finally get taken seriously enough to get an ASD diagnosis. And along the way me being made to feel like I was being a 'snowflake' parent and my DC to develop some some severe mental health problems.

Yes this is so true

Do other countries have better provisions for SEN?

I know SEN support is often inadequate.
I also know from my own parents that poor parenting of my sibling made things worse. And I did not display the same issues because I do not have SEN. My sister does and my parents response was to rarely hold her accountable for anything and to believe her lies. They had in their head this idea of a poor SEN girl who was a victim and just responded to that image. I would be bitter, but it really has not done her any favours at all long term.

@woodhill some countries do not recognise much SEN. France for example has a very low level of diagnosed ASD.

Completely. I feel like the school has already labelled my child difficult and seemed surprised when i challenged them on their handling of an issue which they made harder for him, given his SEN.

I've also just had a mum make a joke to me about how she hopes my son won't 'flip' about extra kids coming to an event, when actually it will cause him added anxiety and had i known there were other kids going I would have declined and have now done so.

The playground exclusion is the worst, particularly with PFB parents who don't know when to say nothing, smile and just give a little understanding, empathy, goodwill.

@Bbqbeefhulahoopsarethebest please don't give yourself a hard time about getting a diagnosis earlier.... it takes a long, long time and you still have a lot of years ahead to give your child what they need. Someone on another thread talked about the Mama Bear instinct being activated and I can see it so much in parents in this situation, there are many avenues of support and understanding and problem solving/avoiding you can now search for.

I remember struggling through a French magazine article on ASD which seemed to be suggesting that it was all mummy issues and some Freudian therapy would set the child straight! I know I only have O level French but I am pretty sure that's what it was saying and I was flabberghasted!

yes I think there was once a theory called something like the 'refrigerator mother' theory. Cold remote mothers who don't bond cause autism.

I still come across some leanings toward this in various places. It's hurtful.

One the parenting thing- one of my DS's psychologists said that actually parents of Dcs with difficulties tend to be much better and more accomploshed parents. Because nothing is ever easy, and we have usually learned to observe, adapt, find out strategies that work organically as we go along. So we tend to be resilient and very accomplished.

He said that to me on a day when I really needed to hear it too.

DD2 has been having increasing difficulties since she was about 8yo (now 11) with her confidence, friendships, clarity of speech (mumbling and being unclear). Her reading, writing and maths dropped from being on track, to behind, to very behind - and she became a selective mute at school and in unfamiliar company for about 18 months.

I asked for a speech therapy referral, so we could work out if lack of confidence was making her mumble, or if mumbled speech was killing her confidence. It felt like I was making a bit of a fuss about a not-very-bright child (who could do her sister's maths homework from 2 years more advanced).

Lockdowns got in the way of the assessments I was asking for, but at home and learning with me after our daily argument to get her started I raised her a maths 'grade' per term because she would ask me for clarification instead of sitting silently. So I pushed for a speech referral - low and behold she's got a rarely diagnosed language and fluency disorder, with a few of the commonly-associated neurodiverse symptoms. And last week she was found to have a mild/moderate (in different pitches) hearing impairment in her left ear.

Now school can't do enough for me (and I acknowledge I am lucky with socio-economic status in relation to this) - for the last term and a half of Primary School.

DTS2 was not diagnosed with a learning disability (or severe learning difficulties) until age 11 and in Yr7 of secondary as his primary school decided he was just naughty and he wasn’t disciplined enough at home. Despite his twin brother being perfectly behaved and well over average in all subjects.

He wasn’t allowed on the Yr6 leavers trips due to ‘silly’ behaviour and their risk assessment. Still makes me emotional thinking about that now 9 years later. His brother and friends all going off to Harry Potter World and him staying at home with me very quiet all day as didn’t want to go out, and I refused to send him to school to sit in a Yr5 class, which was totally out of character. I had begged them to allow me to come and be responsible for him but they said he needed to ‘learn’ and that was policy. He’d had plenty of chances and warnings etc.

If course they wouldn’t have got away with it if he’d had a diagnosis but they refused to refer him for assessment until age 9 and then it took 2 years to be seen.

That was an ASD assessment and they decided he didn’t mean the criteria for ASD too (it was so obvious it was ridiculous). The paediatrician actually asked to me to think about why I needed a ‘label’ for him - to stop him bloody well being discriminated against for a start!

The ASD diagnosis was finally made when he was 17.

In mainstream secondary school (as we couldn’t get an EHCP despite the LD diagnosis), his Headteacher asked me what consequences he had at home, and ‘why would he would want him at his school when he had a waiting list of students who wanted to learn and his learning difficulty did not explain his behaviour’. Bearing in mind his behaviour was socially inappropriate remarks and silliness, disorganisation, refusal to do homework and not doing the work in class. I had to complain as he was getting 2/3 detentions a day! The Pastoral Care teacher even got him to come on the phone and admit he was a ‘naughty boy’ when they rang me in Yr10 to tell me to collect him as he got a fixed term exclusion for pushing a boy who spat in his face!

He didn’t get an EHCP until age 15 after I complained to the Academy Trust as school were refusing to engage with the Education Authority on what support he was getting (none).

I was lucky I was taken seriously and ds was diagnosed fairly young. Even with diagnosis I still hear "he needs to learn". " you weren't getting away with this when you were that age" "I'd cook a meal and make them eat it. " etc
I try to talk about reducing anxiety, spoon theory and managing environment. Some family and friends look at me like I'm suggesting we dance naked round a rock!! Then I get "he just needs telling!!" 🙄 funniest one was bil until their 'high needs' child came along 3 years ago. (No diagnosis but a very stubborn single minded child) hilarious watching her run rings around him "maybe you should just tell her bil..."
before people tell me off for enjoying a child struggle she's a very happy cuddly nt girl who calls all the shots.

Oh god yes I've been there and got the t-shirt with this.

My eldest is autistic. She's also one of those children who would easily fly under the radar. She's verbal, very academic, very able. But she's still autistic through and through and struggles massively. Even at KS1 age, she masks though I obviously try to ensure she's not in a situation where she feels she has to.

So, to the layperson, she appears 'fine'.

I have endured years of people judging me for being a snowflake, a helicopter, over anxious, a mollycoddler. Years. Including family. Mine was diagnosed at three so at least I've known for a little while now but it was especially bad in the toddler years when she was much more challenging than she is now. Mostly, I was solely blamed for making her 'clingy' and I achieved this feat apparently just by being a stay at home mother and not taking her to toddler groups. No, she just utterly can't cope from a noise, sensory, transition perspective- she's not crying because I've left her (for example) at preschool. I mean it doesn't help that me, her save space, isn't there but actually she cannot manage the environment! I didn't take her to baby or toddler groups because she fucking hated them and screamed the entire time she was there.

I sound bitter because I am. It still pisses me off that I spent her early years feeling like a shit parent who'd broken her child somehow when actually I was reading her needs well and meeting them without realising really what I was doing. It just meant that meeting her needs often pissed other people off.

I'm not bothered these days. I either ignore people, or if they're rude/comment to my face they get told to fuck off and mind their own business - especially if it's family who should know better by now. I literally don't care.

Interestingly, I'm actually now, recently diagnosed as both autistic and ADHD myself. So perhaps I've always related to her and 'got' her on a different level to other people who are not, which may be why I was able to recognise her distress and address it more naturally, rather than dismiss it as a clingy, naughty child like everyone else did. Incidentally, i too was a very 'normal child' in lots of ways - clearly as it wasn't spotted until I'm nearly forty, and that's only because I recognised myself from the eleventy billion training and information courses that I've attended to learn about neurodivergence to help my child.

Don't let it get you down, OP. Our children, however they present, have different needs to other children and if you're meeting those needs then sod everyone else. Tough if they don't like it.

I had the opposite - I worked 4 or 5 days a week except ML with both dc til the youngest was 4 and doing so terribly I gave up for a while and I still get treated as if I'm some sort of indulgent SAHP who never tried to get them to follow a routine or do anything.

But then I'm sure my IL think that I created the autism by trying to carry on working and use childcare!

You have to try and shrug so much off.

@antelopevalley - I feel like you about my sister at times but then I recall that my DM herself had her own significant mh issues (and maybe is ASD & DCD herself who can say at her age) and that my Dsis was incredibly hard work for them and still is.

When I look back at both of our families in prior generations I can't condemn how they coped - there is little support now for ND but there was absolutely none then and more judgment.

Everybody does mask to a degree, yes. Absolutely.

The difference for a ND person (speaking as one) is the cost to you of doing it.

An NT person, after a day of putting on for example a professional face at work in the face of dealing with things they don't like or find irritating might be that they feel a bit wiped out or annoyed when they get home. You might work in a noisy office, and the sound irritates you - you much prefer to work in a quiet space but you can still function in that environment even if it makes you feel cross. You get home, you kick off your shoes, sit on the sofa and think 'well that was a shit, annoying day thank god it's over'. You chill, relax, get over it, forget about it.

An ND person, on the other hand passed that 'feeling a bit cross' stage that at NT person reaches by the end of their day eight hours ago. By 9:30am they're already at the point where, taking a classroom as an example, the normal noise of a busy classroom with multiple voices talking, chairs squeaking on the floor, doors slamming, teachers teaching all whilst trying to do their work, all with no ear defenders or adjustments made for them makes them want to rip their own face off with frustration/overload.

They perhaps don't have typical social skills so every word that comes out of their mouth is considered mentally more than it would be by others, who are able to just converse without effort. They have a running commentary in their head 'is that a weird thing to say, have I said the wrong thing?'. They may have to concentrate, all whilst doing everything else, to ensure their facial expression matches whatever the situation demands. 'Is it time to smile now? Was that a joke? I didn't get it, but should I laugh now, because everyone else is. Oh too late, I laughed once everyone else had stopped and now I'm embarrased'.

They're also dealing with whatever transition is coming next, maybe dealing with a new person if they have a supply teacher that day, perhaps seating arrangements have been changed so they've got a new desk partner who they notice - because they notice things like this acutely - smells a little different to the last person, or who taps their pen repeatedly or hums. Their uniform might be irritating them too, labels, seams, maybe their collar is itching them and it's all they can concentrate on. All causing massive anxiety, overload and stress, all whilst trying to put a 'normal' face on. They can't function properly, or if they can it's because they're masking so hard to fit in, avoid being told off, be 'normal' they by the time they get home they just explode, shatter, can't cope. The cost to an ND person, masking day after day, is huge to mental and physical health.

Hope that explains it. Masking is a normal thing, yes but the cost to ND people is far from it.

Where would it be any better though

Was it better when there wasn't so much inclusion in mainstream

Very difficult for everyone

Not this paranoid nonsense again...
Enjoy your millions as if

If course they wouldn’t have got away with it if he’d had a diagnosis but they refused to refer him for assessment until age 9 and then it took 2 years to be seen.
I think you might be a bit unrealistic there. My DS has had a diagnosis since Jan of Y2 and since then has been illegally offrolled, permanently excluded, and excluded from multiple school trips even in a specialist setting.

Diagnosis doesn't really do much - except in our case allow access to meds which do help - but which schools think will make him into a perfect child and then he just isn't "trying enough" if they don't.

one of our dc has a diagnosis & an ehcp & his school is STILL failing him. We’ve raised holy hell recently & are hopefully laying the groundwork to move him when a more suitable place becomes available.

Our other dc is in bits at the moment. He’s on the asd pathway but Christ knows when they’ll get round to him as it’s a long list. He’s been under review with our local paeds unit for 6 yrs. even after school finally agreed there was an issue the amount of hoops we’ve had to jump through/gatekeepers to please has been ridiculous. It just makes an already long process even longer.

it worries me what’s happening to our children in the meantime. Both of mine are crying out for help and there’s no where to turn

There just aren't enough schooling options, it should be much easier to access the curriculum from home. I don't know many parents of kids with SN who haven't had a period of home school or reduced time in school esp with provision breaking down

I can easily access the primary curriculum from home. What I can't do is actually teach my DS (who isn't up to a full school day yet, and isn't doing any work when he is in school) because I have to actually work.

I had the ‘attachment difficulties’ bollocks. DC did a 180 when moved schools.

i mean going from school refusing and running away from school to being up, dressed, uniform on and out the door early excited to go to school 180

a MAJOR change like that is environmental bot attachment. Attachment takes yrs to heal, not a quick change in school

attachment has become a way to fob you off and make everything your fault when kids with real attachment issues are being harmed by the unfounded bollocks they claim is attachment issues.

Yes that's ideal, I have to work too although I don't get to do as much as I'd like, but many of us have part time situations and could support some home schooling and that should be supported through tax breaks etc.

I agree, parents need to work but in reality we are all balancing and at times school provision is not working for some kids and the reality of it is stretches at home.

There is far too much gatekeeping of assessment services and yes, they do make you feel as if it is a parenting issue.

This.

Still on waiting lists that may well age out of before getting anywhere and that's despite strong family history of whole slew of diagnoses.

*some teachers imply a lack of a firm hand and good parenting is the issue. Or that your child has no SN they're just not very bright.

Yep - it's usually been a teacher/classroom issue and when finally sorted they can cope again - as mine mostly cope though their behaviour at home after school could and occasionally still can be very difficult to manage.

What I can't do is actually teach my DS (who isn't up to a full school day yet, and isn't doing any work when he is in school) because I have to actually work.

It massively delay my return to work with massive implications for me and for our family finances - looking back we did loads - before and after school in every area - which frequently wasn't easy at all.

Annoyingly I have family who see them doing well with exams and are all like you didn't need to do the support - though also had it as a reason they didn't get support in school or further reasons not to diagnose.

Yy mercurial my dc cope at school because they don't do anything at all after school or at weekends or in the holidays. That severely impacts my ability to earn.

Why am I waffling on mumsnet today? I've been up half the night as my dd got scared about the end of term and wouldn't sleep. So that's yet another sick day.

And this is the happy path where they're not also school refusing.

We have had so many comments about our parenting. Mostly from family. It’s better to ignore or get quietly angry than to take them seriously. While I hope they would rise to the occasion with their own challenging child, I actually find myself glad they don’t have a child with special needs because I don’t think their child would get the parenting required since they take such a rigid view or proper parenting.

Yes, once my DD had the correct ASD support in place she completely u-turned. She went from hysterical going in and not in class at all to panicking if we are even 30 seconds late and loving school.

It's definitely the new form of parent blaming. When her ASD was diagnosed I had to get her ehcp rewritten as it was full of school's diagnosis of attachment ie "needs staff experienced in attachment difficulties". Completely unfounded medically, complete BS