'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.

The schools don’t have the resources to deal with SEN kids they way they should, and everyone suffers. My DD has a few SEN children in her class it they are incredibly disruptive and take up a lot of the staff’s time which puts everyone at a disadvantage.

Ditto with the “healthy”. My 2 with ASD really hate the feel of carbonated drinks. So I ask for non fizzy for them at parties and get “Aww, I’m sure mummy could let you have it just this once!” Trust me, it would be EASIER if they would have it! Sometimes it’s the only option on a kid’s menu!

I agree with that, children who are not well supported are being failed and other kids in the class are being failed too. Where I am PSAs are hired for 1:1 roles with children who have no experience of what the child needs e.g. how to help them regulate.

My son now a teenager was diagnosed when he was very young and has autism and very severe learning difficulties. Even so we still have people ( particularly who work in health) who haven't believed us about things, think we are 'just parent's' and fuss too much. They have been wrong every time. There are also people who work for the LA who blatantly lie rather than admit they have got things wrong/ been discrimatory. The shit never goes away.

I was an overly anxious parent with a child with attachment difficulties. I was a nightmare and just needed to put in boundaries.

Then overnight half-way through reception a switch flipped and school were dealing with an overwhelmed, distraught child.

Funnily enough, THEN they recognised her autism.

If I had a pound for every time a family member, friends, teachers...even doctors "advising" me on where I was going wrong with my son I would be a very rich woman! He first was seen by a child psychologist when he was four....and up until he was eighteen I lost count of the many counsellors and therapists I had to fight to get an appointment with. Once he turned 18 he fell of the radar of child services and I could no longer advocate for him as he was deemed an adult. We struggled on...I have two other sons and they never displayed the same MH problems . He became suicidal....I found notes he had written which broke my heart. I couldn't 'fix' things for him and I was in despair. I managed to get him to the GP....he was given antidepressants and referred for more therapy. After many more years...he couldn't finish his education or even attempt to live independently ....and despite being given ever increasing doses of antidepressants he still was extremely troubled. After yet more suicidal thoughts he was given an appointment with a psychiatrist . Her verdict....autism, OCD, clinical depression and severe social anxiety. She was horrified that this had never been picked up on until he was 33! Even though she is confident in her diagnosis he still has to be formally assessed for autism....which she says will open the pathways for help which he should have been getting many years ago. He's now 37...been waiting on the assessment for 4 years now! My heart absolutely breaks for him, he is the most beautiful soul. When I think of all the times I was that "snowflake" parent I could scream! I feel guilty also that I didn't recognise the 'signs' of autism....but 37 years ago I knew little to nothing about it and didn't have access to the internet. It's only now that I've educated myself on the subject that it is glaringly obvious.

I was the kid in such a story- medical illness rather than SEN, but similar issues. I have had symptomatic Crohns from age 5, but was not diagnosed till 16, because at that time Crohns was thought not to occur in children. During the intervening years many people, including some doctors, thought that I was just the spoilt neurotic child of neurotic overanxious parents. By the end of those 11 years of such treatment, we really were neurotic and overanxious! Worse, it could easily have cost my dad his life. One consultant diagnosed his exhaustion and malaise as due to overanxiety about that spoilt neurotic daughter of his. Actually, his symptoms were due to a form of cancer, which would probably have killed him within 18 months if he hadn't got a second opinion.

Absolutely agree, except that a diagnosis seems to make zero difference to the help available. We gave up and went private for our son's ASC diagnosis, but other than a very sarcastic response from the NHS pediatrician (who scoffed "far be it from me to argue with the Lorna Wing centre!" and then ignored us for 2 years while we begged for help) it has made FA difference. I am convinced DS would benefit from melatonin and/or ritalin but there is no private pediatrician local to us, DS won't travel to London now because of his sensory issues and his dreadful consultant is on some kind of megalomaniac power trip whereby she pretends DS does not exist as some bizarre punishment for having the temerity to swerve the NHS wait.

Meanwhile, DS has been kicked out of school for disruptive behaviour and I have been abused countless times by strangers because he simply will not do anything he is told, ever. I have been advised by an ASC charity not to escalate or raise my voice and to acknowledge DS' feelings of overwhelm. For my sins, I have lost count of the times I have heard "no wonder he's such a disobedient little shit" or "he wants a good hiding" and once - from a father - "5 minutes alone with me and he'd never pull that shit again".

The judgment of other parents is absolutely the worst part of SEN parenting.

I've not experienced it at school but I did have it with a football club welfare officer who just took a coaches view of affairs as gospel. She didn't even ask if the child involved had special needs and if they needed to make reasonable adjustments. He didn't, but I would have thought it was a basic question to ask a child's parents! When I look at the club website now and see their policies and procedures, I am not sure they learnt anything, although thank goodness that welfare officer is long gone.

Late assessment here.

Society basically acts like I should discipline the issues out of my child.

If they could explain the appropriate punishment for an adult sized person who has barricaded theirs elf in the room and screams "help" if you try ti talk to them and has been sobbing for over an hour because she should be in school, that'd be swell.

My DS first school managed him out and his next school PEx him despite both acknowledging his diagnosis. He was just supposed to magically not be like a child with ADHD, despite having severe ADHD.

To be fair, sometimes it's a parenting issue. They need to ensure the environment is meeting the child's needs before assuming the child is 'wrong'.

Also most children, including those with additional needs, do significantly better in a structured consistent home. Encouraging parents of children who are struggling to create that is not a bad thing.

And yes, it's really patronising when you are having to go through the motions on parenting courses to prove you are addressing the basics.

Children having additional needs doesn't exclude them also being in an inadequate environment.

I saw a dreadful case of a toddler with a hearing impediment in an inadequate home. She didn't stand a chance, bless her.

It's the automatic assumption that there is no consistent structure at home that most of us find infuriating.

Due to DD my house is run like clockwork with military precision. Not because I've been told to but because I worked out it helps when she was about 18 months old. Didn't stop school assuming I have no consistent structure or boundaries.

I was a primary teacher until my own dcs needs meant I had to give up my job. The training on SEND for teachers is woeful. I remember a desperate parent asking me about the conners forms for adhd, her child 'was fine' in class but had awful meltdowns at home. I felt bad for her but could only go on what I saw in class. He wasn't disruptive and generally got his work done so I know it wasn't very helpful. I felt really bad about it and did include a note to say I'd be happy to speak to the doctor but behaviour wasn't an issue in class. The sendco rolled her eyes at me and said 'a lot of parents do anything to try and claim money for their child.' Shocking. It's ignorance unfortunately.

I've been on both sides of the table. I knew DS1 was not a typical child very early. School agreed, but felt he was just a bit behind.

It was frustrating. I think children often mask their behaviour and trigger at school so it's less obvious. Also, they're one in 25/30 children. We see the non typical behaviours much more clearly.

I knew exactly how much supportive input he was getting at home. I also knew he was extremely bright- something that wasn't obvious to them at school.

Twice I had class teachers come to me several months later saying 'gosh yes, he is a bright spark! I had no idea when he started'.

Oh yes I have had this.

I have one child who has ASD, Tourettes and a number of other things including two anaphylactic allergies. I have been told I am causing it due to being over anxious. I baby him too much so of course he is unable to do whatever it is. When he was unable to correctly identify when he might have an allergic reaction I was called a helicopter parent and over anxious because I would not leave him alone at a party (One memorable occasion I was the only parent who did not drop and run and quite late that evening the mother rang me clearly pissed out of her head and started telling me that If I was going to continue to not let go of the apron strings then DS would become even more strange than he already was and oh by the way she heard autism could be cured by cutting out wheat and dairy).

I have also had to really persist with getting a medical diagnosis on what turned out to be his second anaphylactic allergy. His paediatrician kept fobbing me off saying that the reactions I had recorded with my own eyes were nothing more than a bunch of coincidences and it was not un til he ended up in A&E from the school that they decided to take me seriously and test him.

On a slightly lesser scale I am bloody sick of having friends who do not have children tell me how if they had a child there is no way they would allow their child to show 'fussy eating' (sensory issues plus extreme anxiety considering his allergies) and that i am catering to him, or saying that he ought to be doing this or that or aqchieveing this or that.

No-one seems to look at the fact there is a 2 year younger sibling who has none of these issues and does not require this level of support and think ; 'Oh,, maybe it is not the mother being neurotic but an actual real thing going on with the child'.

Fuckers. (rant over).

I know what you mean. I knew for years that my son had autism and had to keep pushing for him to be assessed so that he could get the help he needed at school. The school themselves were marvellous, but I was even reprimanded by an educational psychologist asking 'Don't you want him to be normal?' After repeatedly being seen as a nuisance by the 'experts' they were very pleased with themselves when they declared they knew 'what was wrong with him - it's autism!' Another delightful psychologist claimed that his special needs would mean he would never gain a formal qualification in his life. Well that was over 20 years ago and he is currently on a degree level course!

"And yes, it's really patronising when you are having to go through the motions on parenting courses to prove you are addressing the basics."

The problem is that some parenting courses are not appropriate for some children's needs because they are aimed at NT children. Sometimes a different approach is needed and pushing what works with the average child creates more problems. Eg reward charts.

In life people judge everything all the time and probably 90% is totally wrong. Unfortunately sometimes goes your own mph you just have to ignore- as they say ‘you can’t argue with stupid’. Hugs op

In life people judge everything all the time and probably 90% is totally wrong. Unfortunately sometimes to look after your own mh you just have to ignore- as they say ‘you can’t argue with stupid’. Hug op

I agree with every single post here! One of my dc was finally diagnosed with adhd in their late teens, after a lifetime of me raising concerns. It's a lonely road, and you feel like you're going crazy at times.

I especially relate to the stories of people giving you unsolicited advice on parenting and lifestyle, when you are so strict with everything and have already tried everything, and it has the effect of propping up your dc, and keeping them looking 'normal' and masking in school, so they continue to be just typical enough to elude diagnoses, but are constantly in trouble and/or getting negative feedback.

I also wonder about bias towards the parent/parents raising the concerns. Are some taken more seriously due to their socioeconomic status? I would say absolutely.

Oh and yes like a pp it is annoying when people consider that you are over egging issues in order to claim money.

I got told I wasn’t implementing school strategies at home (being too soft) which was why DD was acting up at school, and also by the same teacher I was too strict at home which is why DD was acting up at school. Talk about you can’t win as a parent!

Foundation teacher was hugely judgmental about my parenting but almost apologised when compliant DD2 started school ‘I can see now DD’s behaviour wasn’t your fault’. So the assumption all along was that her behaviour was my fault. Didn’t get better with diagnosis. Headteacher told me DD was choosing to behave badly and she didn’t learn bad behaviour at school so must have learnt it from me at home. My DD is unusual as she explodes in the moment and is mostly calm at home and actually pretty well behaved. Constantly accused of lying when I said she behaved differently at home.

Thank fuck the primary years are behind us and she is in secondary school with sensible staff who meet her needs, no more exploding.

Yes- 100% I know for a fact that I am taken more seriously by experts even although I experience alot of fobbing off. I am a solicitor, well spoken and articiulate. Some of my clients (I work in family law) are treated absolutely shamefully because they might not be able to express themselves very well, or are from clearly poorer backgrounds.