To think things said to SEN parents can be horrific

[summernight]

What's the worst you've had said to you?

Yesterday, after a school event, that ds (8 - HFA) was involved in with the class and the teacher said to me 'it was great, he looked just all the other children during the event. At the end of the day, all us parents want is for our children to look normal' (soooo....he doesn't look normal the rest of the time). Sad thing is, I smiled and didn't say anything.

From a doctor we've had "there's nothing wrong with him. Parents of children like yours (non verbal autism) always think they are ill when they are not". He was ill.

Magicroundabout321
I don't understand why we're not supposed to say "She's got xyz" anymore, but " She is living with xyz" instead. To me that sounds as if it's their partner rather than illness, condition or whatever

Saying "she has" doesn't bother me, but using "living with" rather than "suffers from" is definitely an improvement. DD doesn't suffer.

I wonder of any one has advice on the best way to come across.
Ds 4 is in reception has peadatrician, Salt specialist teacher throughout nursery. He's not diagnosed but is suspected ASD. I have a diagnosis of Aspergers, Dh has autism and our eldest has Autism they both 2 are diagnosed. We have so far gone though the it's your parenting ( well the blamed only me) and now we are getting he's copying traits of everyone which isn't true as he's so very different to everyone ( we are a household of 5 3 with ASD/ aspergers diagnosis but we are nothing Apple we are all very different and have different traits).
Funny thing is our youngest ds has stomach issues which he's being tested for and at his last peadatrician appoinment once family history was written down the peadtrcian decided his issues was behaviour and that he probably has autism when he show nothing that even makes you question autism at all. He's developing normally and well with no delays at all he's 3 nearly 4 even nursery said he's where he should be and doesn't show do anything concerning at all. I really can't win.

What I have a huge issue with are the various agencies who tell me we need to ask for help but when I do ask for help I'm told no. Can't win.

The state we live in, New Jersey, has one of the best funded budgets for the disabled. They have some of the top medical research teams and therapists in the world. It's still too hard and others don't understand.

agencies who tell me we need to ask for help but when I do ask for help I'm told no

Agencies, family, friends, neighbours.....

My son has ASD PDA and at the moment a huge amount of anxiety related to going out. The only way I can get him outside is if he wears a balaclava. The amount of comments this attracts is unbelievable. You'd think as he looks so different in his balaclava people would leave him alone but every other person we pass shouts "are you cold?" At him. He's newly diagnosed and struggling with his diagnosis so I don't want to disclose it to strangers while he's stood there. I never know what to say for the best to them but I'm rapidly developing my best "don't you dare say anything to my son" face.

I often wonder if my experience of professionals (which is actually fairly good) is that way because I am “posh” and educated.

Yes zzzzz! I'm well educated, live in an affluent area and am a comparatively young Mum (many of my DS's friends parents are 10-15 years older than me). Our locale is kind of known for helicopter parents and initially I have been treated as if I didn't know what I was on about.

Much of the time now, if it's an NHS appointment I either leave my own NHS lanyard on (as I've usually had to take time out of work) or else I drop in somewhere that I'm NHS too and the tone changes.

One of DS' SENCOs told me I should quit working to nurture him and be more like the other Mums in the area. I pointed out that unlike them, I was the sole earner (single Mum) and that benefits did not cover the cost of living in our area (basically even full housing benefit won't cover my rent round here and we would be living on poverty. As it was I was working full time and on the verge of using a food bank at the time. Thankfully not any more). When they actually asked what my job was they were shocked I was actually skilled (was working in risk and governance at the time) and confessed they thought I wouldn't have a job like that and they were sure I nurtured him just fine after all. Apparently had I just worked at Tesco or something, I'd behind of those "refrigerator Mums" and it wouldn't have mattered if I was on benefits.

The replacement SENCO was extremely patronising, until I used some technical terms in response and then assured her I would understand, as I have a MSc in a related field. "Oh, I think you're probably more qualified than me then." Was her response. The whole SLT was lovely after that, and the smarmy head went from disdainful to falling over himself to say hello to us in the playground.

I had, when DS was in year 1 "He's OK educationally for a boy like him isn't he"? Said by the teacher, who had ignored him all year, given him work fit for a kid in nursery and books with pictures in as he wouldn't "handle magic key" (even though he was reading solidly at home, is sharp as a knife and is better at maths than me). All because he is a 28 week prem child with COPD, multiple food allergies and restrictive airway syndrome. To her, that meant thick.
I just said "I've told you all year, you utter moron". And walked away.

I think every kid is as good and clever and funny and "normal" as you allow them to be. Schools need to stop bloody pigeonholing kids with health or educational needs to fit some government rhetoric and actually look at the child as an individual.
And the teacher who said that to you OP, I would be sending a strongly worded letter to the head. What a disgraceful thing to say.

Oh the resting bitch face. Yes I have one these days. I don't tolerate anyone messing with my family. I have very bright DC and the sheer number of other parents who are jealous and make really nasty comments about DD is unbelievable. For a kid who has a hard time with anxiety I'm beyond proud that she got up on a broadway theatre and sang three nursery rhymes and let it go. Apparently it's unfair my DD had this opportunity and others (their DC) don't. I asked the superintendent of our district to address the online comments and she didn't. I have reported the superintendent to the county and our lawyer is pushing for the school to formally address the comments made rather than deleting them. Yes it's exhausting but someone has to stand up for these DC and adults who are able and have the physical and cognitive skills to be accomplishing amazing things every single day with much less effort.

titty Yes I've had that so many times. I dress professionally but no one expects me to be the CFO of a fintech company. Im under 40 and my eldest is 7. Most others in our area have their first at 38. I had my 3rd at 35. Their eyes just about fall out of their head when I tell them I work FT, have 3DC who are young and two have high functioning autism.

“She looks normal until she speaks.”
A friend who i later managed to educate.

“Doesn’t do much does she.”
Utter wanker of a dad on the local park.

“Minishockers is what she is; she’ll never progress.”
Family liaison worker at DD’s old special school.
I removed her and she thrived.

I too hate the “bless” on the end of sentences when people are talking about her.

Some comments made to dd.

From an autism specialist CPN (dd recently dxed with autism at 15) 'well you are not like one of those dribbly, non verbal ones.'

From consultant neurologist (dd is a wheelchair user) 'How on earth are you going to manage at university in a wheelchair?'
Later in the same appointment when she was told about the autism dx ' I don't know much about autism, tell me how it feels' with her face inches from dd's.

The funniest one was in a report while dd was in hospital stating that our family was isolated due to our 'rural location'. We live less than 10 minutes from the centre of a cathedral and university city of 130,00 which is a transport and amenities hub for a large area. (But it isn't London I suppose.)

There’s a moment when my frankly sloppy appearance clicks from “poor shabby probably unemployed”, too “posh dowdy probably has a Labrador”

OK guys - so we have a clinic appointment next week - who's got a labrador I can borrow to liberally sprinkle myself with dog hair before the appointment to lend me an aura of credibility? :D Can trade for an unobligingly not-sheddy greyhound.

*@sleepyblueocean
I dread being told this this. About to take DS to the GP to see if he's coming down with something. There's definitely something wrong, but he can't tell me. *

My DS is 2 and we're waiting for an ASD diagnosis. We've had no ignorant or nasty comments yet but judging from people's experiences I'm going to have to toughen up and/or open my mouth!

Be fair though. That's a decent thing for the SENCO to do. Many people do struggle and are afraid to speak up for fear of being thought stupid. Stating its ok, is a real help for some. If it doesn't apply to you, just say thanks, I'll ask if I need to and move on.

I would normally agree, but this came at the end of the meeting in which he had been patronising throughout. There was a change In his attitude towards me after that.

it was clear that all the other children were horrible to her because she kept trying to play with them so if she learns to leave them all alone then there won't be a problem. this is the most callous, heartless, idiotic thing ever, and this person is in charge of children?

who's got a labrador I can borrow to liberally sprinkle myself with dog hair before the appointment to lend me an aura of credibility

You don't need the labrador, just an appropriately sized collar or a dog leash "carelessly" tucked in your jacket pocket/handbag

They also reckoned that dd's desire to use her wheelchair at Paddington station was not because she really struggled to walk the distances involved but because we were country bumpkins who couldn't cope with London crowds.

I don't think you can say things are better now and pat ourselves on the back.
Yes not so many disabled people are automatically shoved into institutions now but if real support isn't available, it is actually at least as bad.
Physically access might be better but if it is inconsistent then the end result is the same.

zzzz yes to the professional thing and how it's changed things massively for us once they realize what they're dealing with.

We don't live in the UK, and you can do an early self referral here for services.When we did it initially, our service coordinator was a condescending piece of shit, and had clearly been allocated to us as an english as a second language family, based solely on our foreign sounding name.

She was shocked when I met her and it clicked that we didn't speak the assumed first language after all - I'm positive that this major assumption that you only speak X at home is their default as to why kids have speech and understanding issues in the district.

I took her to task many times about being shit, unorganized and pushing for services for DS many many times as they did less than fuck all and are getting paid from the state for it. I was actually told "well; clearly, you're a lot more sophisticated and educated than a lot of the families we see, and can advocate and have no issues with the language, so you'll have no issues getting the services you need and have been assigned"

I mean, that's great for us, but what about every other poor fecker who can't / doesn't know how to / there's a language barrier?!

The other thing that I have noticed is that even tho special education services here are dominated by women from coordinators to therapists, to the review boards, if I take DH with me, we get a special level of deference and agreement to what we're pushing for that I don't get when I'm dealing with them by myself.

Ironic really as DH is about 5% involved in any of the day to day stuff - I do find there's still a tendency to label / insinuate women parents as hysterical / overbearing

Ds’ senco once told me ‘oh, you are actually quite bright’. I didn’t know whether to laugh or cry.

Little your post reminds me of the time DD’s link worker said that as we were a resilient family with articulate parents there wasn’t much they could do to help.

She never saw how broken we were, and me being able to write a strong letter has never resolved DD’s speech & Language Disorder.

They fail to see passed the painted on smile that so many parents have.

I often wonder if my experience of professionals (which is actually fairly good) is that way because I am “posh” and educated.

YES. Whether it's getting DS assessed quickly at A&E (DS has congenital airway defect), or getting help for his speech delay, there is a really obvious change in attitude when they click that I'm 'posh' sounding, well educated, knowledgeable, and can throw seven syllable medical terms around with the best of them. They sort of straighten up and then use a different tone.

The funniest was me being asked my degree subjects(s) - sciences - and being told "Right, I'll teach you how to use a stethoscope and monitor his stats." I'm not convinced my particular field qualifies me to get medical training, but I'm glad they apparently thought I was capable, because it meant the difference between spending our lives in hospital, and being able to monitor DS at home as much as possible.

I do often wonder how those less confident, informed and educated manage to get the care needed, as I've sat in cubicles listening to other parents be dismissed.