'Snowflake' parent when actually there is undiagnosed SEN

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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.

That sounds tough but as the parent you would have a great deal more insight and experience with your child than someone who has glimpses and making a judgement based on that. Who are these people that you are referring to and do they spend alot of time with your DC?

Yes I agree OP. I think one of the hardest things about having a child with SEN is dealing with the judgement from other people (I don't have a SEN child myself but thinking about my friend's experience). In fact I guess the same is true for anyone with a hidden disability.

My son's previous school never even recognised the diagnosis when it came and managed him out.

Parenting children with additional needs can look very different. I've had DC that needed far more firm, structured handling and been looked at as though I were a monster, and DC that needed structure but very 'hands off' in the moment, as any intervention escalated things.

You start to shrug it off.

@Mally100 i guess I am mainly talking about teachers as in many cases they are the ones with the power to refer for assessment/diagnosis.

@Comefromaway that sounds really awful. I hope he is doing much better wherever he is now.

I've experienced this. The funny side of it is when your child with SEN insists on making aggressively healthy choices at parties (ie water, no icing on cake, only eats crunchy veg). Other parents clearly thought I was beyond precious until they noticed my other (NT) child scoffing everything he could see that had sugar on 😂

As others have said, you shrug it off after a bit!

I was told it was chosen behaviour. He moved schools where he scraped enough GCSE's to go to college and is now expected to get fantastic grades with a place at music conservatoire in September.

Two teachers from his old school, one of whom has now left have recently contacted me to say they thought he was failed.

I was called an anxious parent and unfortunately can’t go into great deal but what I will say is ss and local hospital made some whopper mistakes that after taking legal advice could result in compensation in the region of millions. Which I’m not going to lie I’m looking forward to after what they put me through.however I would prefer to take the court route and have the ss workers jailed because one broke the law and it is also documented on paper at the police station she broke the law. What you have is a pyramid with ss they get paid for every child that can be adopted and if you hadn’t noticed the pattern of the ones on the news they come from lower class backgrounds where as those from a higher class background have actually gone underground with new identities and fled the country. If anyone actually knew what went one behind closed doors in secret courts (yes they do exist) I think everyone would be avoiding every professional and many children would be undiagnosed due to fear from what could be the result.

I think I need to develop a thicker skin and learn to shrug it off.

DCs current teacher (in contrast to previous ones) has been fantastic and advised me to push harder, keep fighting to get what they need. I'm increasing seeing you just have to do what you need to advocate for your child and not worry too much what others think.

Nothing new sadly. When I was at college, they actually, despite medical evidence (recognised by DWP, Railcards, Moorfields Eye Hospital, SS and many others) I was told that I don't have a visual impairment and am actually Dyslexic. There was no evidence of Dyslexia, apart from a computer screening which isn't a proper diagnosis. The Ed Psych I saw, (I only agreed to prove I didn't have it) agreed with me that I don't have Dyslexia.

They never recognised my diagnosis and went as far to say it doesn't actually exist, despite there being a charity who now have their own awareness day. My GP reluctantly (she wasn't happy that the piece of paper I hadn't wasn't good enough) wrote a letter stating that I do have a diagnosis of a visual impairment.

But this is the same woman who can't seem to understand that Autism is a spectrum.

This was around 2009 - 2012.

It's absolutely par for the course - I've been asked by other parents about 'my anxiety' as if I was the cause of my kids' autism and 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.

I've heard it all. Wait til someone sidles up to you in the playground to moan about disruptive kids with SN. Or you get ostracised. Or the endless convos about they can't wear their kids out even with 10 extra curriculars whilst you struggle to get them in for core school hours.

Yanbu...

Yes me. I often felt that other parents considered me over protective, and school thought I was raising concerns unnecessarily.

I don't want to start a fight with the PP, but SW really don't get paid for every child they get adopted. I'm not saying that SWs never make mistakes, nor that there won't be some rogue SWs; family courts are 'secret' to protect the privacy of the children, but SWs involved in child protection are generally treading a very fine tightrope. If they get it wrong then either children are removed unnecessarily, or a child is seriously harmed or dies. Adoption needs to be the 'least worse' option.

Oh yes people watch me trailing my dc who has very poor motor skills in the playground and regularly assume I'm anxious. Tiresome.

When DD1 was at nursery I was told there was nothing wrong with her except she had an overprotective and overanxious mother.

Within two weeks of starting Primary school they ascertained she had potential hearing problems, severe speech delay, muscle weakness in her hands....

Shes 11 now. She has dyslexia. I still have no faith in my assessment of her (and her sister).

Yes we were told dd was fine in nursery, and even when OT assessed her and found many issues not one single comeback on the school nursery and their awful advice.

Mumsnet is great for sharing horrible experiences and processing them.

With my DC I was told that they were simply mimicking their disabled sibling despite their sibling also having ASC and there being a recognised genetic link. I pointed out that if this was the case, wouldn't DC also be mimicking their sibling's other conditions and not just the autistic ones. Apparently no, DC was just picking and choosing. A teacher at DC school wrote a letter to CAMHS stating that they refused to complete to questionnaires they'd been sent as they did not believe they were appropriate or applicable to DC, that DC was simply highly strung and needed firmer boundaries/discipline at home. CAMHS tried to say that DC had attachment issues due to me working until I pointed out that actually I worked term time only and started/ended work during the school day when DC wasn't there, they then tried to say DC had co-dependency issues to me not establishing healthy distance between us The outcome of the assessment was to wait and see how he presented in a few years time. They also recommended a shitty parenting course with the most patronising advice ever about the importance of a routine, about feeding your child three meals a day, making sure they have clean clothes and a bed, get them to school - really basic stuff that most people would be doing anyway and nothing helpful to DC or us.

Pushed for a second opinion and moved DC to a different school. At the end of his first week the SENCo there approached me and (tactfully) asked if we'd ever considered that DC might not be developing in the expected ways, previous school had not sent DC files over so SENCo didn't know there'd already been a previous assessment. When I told her all about it she said she would be supportive of getting a second opinion and that she would look at what support DC needed in school in the meantime. The second opinion service accepted DC, looked at the records for the previous assessment and said that there was more than enough evidence there to support a diagnosis and they could not understand why one was not made other than school not agreeing that one was necessary. They did their own assessment and diagnosed DC.

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

jott same thing, we moved schools, and voila,suddenly the teacher initiated a conversation about ASD. We had already bypassed them and had it in hand though.

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

This with bells and whistles on

Yes, and it's awful. I can always tell when there is something not right about my dc from when they were babies but it always takes years to get a diagnosis.

Yes, It unfortunately seems to be part of the universal experience for those who's children don't have accompanying Learning Disabilities.

I kept being told DS would 'grow out of it' and it took a LOT of fighting and going around the houses to get him diagnosed.. i had to go via the route of him being diagnosed with Dyspraxia first before they'd consider referring for ADHD, then Autism.

I even had the paediatrician who confirmed the Occupational Therapists determination of Dyspraxia tell me DS didn't have Autism.. only for CAHMs to be annoyed 2 years later that he was SO blatantly autistic and it hadn't been picked up earlier.

I'm now having that fun with DD.. who they're still trying to tell me isn't ND, when i can see the signs of ADHD plain as day (i'm asd/adhd i know how it works in girls)

If you're in the UK, I wouldn't start counting on those millions. Our courts are not very generous with their compensation awards.

I've heard it all. Wait til someone sidles up to you in the playground to moan about disruptive kids with SN. Or you get ostracised. Or the endless convos about they can't wear their kids out even with 10 extra curriculars whilst you struggle to get them in for core school hours.

Same.

I've had people at DC previous school moaning that it's "not fair" that some kids get a one to one TA to help them when "the ones who could really benefit from that sort of help" (i.e., the NT kids) don't get it, as if my kid is a write-off so there's no point in providing the help.

Related to the above, the people who presume my kid isn't bright or isn't interested in learning just because they're disabled.

Yes to the extra curriculars! "Can you not just make him join a club? I would...." mate, you're welcome to fucking try, hope you like having to sprint up the road after a pissed off 8yr old who would give Usain Bolt a run for his money.

Ditto the people who think they could do better as if its just a question if superior parenting and some sort of failure or lack of knowledge on my part. "Send him to me, I'll get him sorted out... " fantastic, I'll be in the spa. Call me when he breaks you.

The thoughtless comment like "at what point do you start to think 'maybe it's something I did?' rather than an actual condition?" (I have two disabled children) or "what's their special talent? All disabled kids have a talent, don't they?" or some variation on the good old "God only gives special kids to special parents" which irks me on more levels than I could explain here. Then there's the bastarding Holland drivel which can fuck right off.

My son was referred by the health visitor so things were being looked at before he started nursery/school. It took a few years to get his diagnosis. But school have always been very good with him. Even before diagnosis if he found things to much. The TA would take him for a walk. Go to the sensory room. Have a chat about how he feels. Play with the football for a bit . The TA would sit with him in the class all the time. And that's all before a diagnosis and an ehcp. He's now got the diagnosis for autism and had an ehcp.

I don't fully understand autism I'm still learning. And I always feel that I can ring senco and tell them my worries or ask about things I do not fully understand.

I more about outside of school. Strangers ect.

Me. I was all set to be sent on multiple "parenting courses" with veiled threats of SS involvement from school when ds was diagnosed with multiple conditions including autism. I cried with relief when the developmental paediatrician confirmed it as I was so scared of how far school might push their belief of poor parenting. DS ended up being home educated as he was injured by a teacher, in school... a few years later. I'm not angry about it anymore, ds has even returned to a mainstream college education albeit in a specialist unit in the same area and is doing brilliantly, it is clear that understanding and provision has come on leaps and bounds in the last decade. But I well remember how frightened I was and how I couldn't get anyone to listen to me as minds had been made up.

It's sad to hear similar stories. I feel like I've failed my DC not being able to get her assessed sooner. Maybe they would be in a better place now if I'd been able to get a diagnosis sooner.