Warning, major rant. I am so f***ed off with having to explain dd's "hidden" disability

[Blossomgoodwill]

Sorry but this is going to be long........


Right was at my mum's today with ds and dd. My mum was taking cat to vet and I was going to leave kids with my dad.
Dd started saying she wanted to go and mum was like "aww let her go you can't not let her experience things blah de blah"
I was reluctant but as mum had said in front off dd I could hardly then back track.
Went to vet and it was ok. Dd is very nervous around animals but thought it may do her good.
In waiting area man comes out of vet room with a staff puppy. He was very bouncy excitable and that was it dd freaked big time. She screamed the place down and had her fingers in her ears. I have not seen her like that in a long long time.
Tried to calm her down but she wouldn't. I apologised big time to the owner and tried to explain to dd that she mustn't scream as she was scaring the little dog etc.
So eventually took her into the vet's room and she was a bit all over the place as still calming down from the dog.
Once vet talked about giving mum's cat an injection dd decided to go into reception. Meanwhile I am in doorway and dd started to talk to receptionist. I was talking to vet about my very nervous guinea pig (another story!) and I couldn't really concentrate as could hear receptionist saying to dd "now you mustn't come here if you are scared of animals". "you acted very silly with all that screaming and you can't come here if you are going to act like that" and loads more.
So I came out and said to the woman "she has special needs" She was like well she did understand what I was saying.
I got all chocked up and woman was then back tracking saying "next time dd you come and you are scared stand with me. we can draw next time".
I took dd out to the car and woman mentioned to mum she felt bad. Mum said that dd was on the autistic spectrum and that made her feel worse.
Reason I felt so bad is 1. how dd can be fine one minute and "normal" next minute all over the place. Her behaviour is so erratic at times and even school say she is the hardest to judge.
The 2nd is I am sick of having to explain to people. As dd has no visable disability people just assume she is either naughty or I am a bad mother.
I know people that have badges with I am not naughty I am autistic but don't like that idea either.
Just needed to get that out xxx

[2snowshoes]

I am so sorry your dd had such a bad time(and you)
staffs are lovely dogs. BUT they are very bouncy and I can quite understand any child being scared by one(we used to have them)
sounds like the receptionist made a bad call and said something with out thinking.
I do feel for you. I was once told(shocked me at the time but now get it ) that I was lucky as my dd is in a wheelchair so people see she is disabeled.
my only question is really why you have to "excuse" her behaiviour(sorry can't think how else to put it) as even if she was nt cahnces are she could be freaked by a dog.

[SpookyMadMerryChristmasMummy]

((((hugs))))


Its a bloody shame that autism and the spectrum disorders are still so misunderstood... would be so much easier if there was a visual as to why our children react so but...as you say.. without a badge no-one can tell. Sooooo frustrating.
My dd1 was in a similar position recently. I found myself not only having to explain her autistic spectrum disorder.. but explaining to a family member

[2snowshoes]

can I just add that although dd's disability is VERY visible I still have to explain it to everyone.

[mamadadawahwah]

Maybe you should have tried jumping on and licking the receptionist and perhaps a little wee in her lap would set her straight about how children can be afraid of dogs. Silly cow.

[Blossomgoodwill]

2shoes ~ exactly I wouldn't have been happy if she had talked to any of my 2 children like that. I just wanted her to know that dd probably wasn't taking on board what she was saying!
Spooky ~ a family member What happened???
mmddww ~ exactly. Unless she has asd tattooed on her forehead this is the kind of things we all have to put up with (sigh)
Honestly some of the things that people I know have said about dd is shocking.

[macwoozy]

I know exactly where you're coming from Blossomhill, at times my ds can come across as perfectly normal when he's supposedly listening to someone, and then out he comes with very erratic behaviour. I admit I bought one of those 'he's not just naughty he's autistic too' badges, I intended to use them whilst on holiday but never did, felt uneasy about it in the end.

[anniebear]

No helpful advice BH but just wanted to tell you I know how you feel

I am glad Ellie looks like she does, but sometimes it was be a bit easier if her disability was easier

[Jimjams2]

Blossom it happpens across the spectrum. People are incredibly dense when faced with "odd" behaviour. In a small bookshop last week ds1 ended up lying on the floor stretched out screaming the place down (he;s a tall 7 so took up a lot of the aisle- he wanted to see the stairs behind the till) and one of the assistants was saying to him "what are you doing what are you doing, what is he doing" over and over. Err what does it look like? He's lying on the floor screaming his head off.

I think ds1 disability is quite visible in that he has a lot of odd movements, he yelps rather than talks, and does sideways eyes stimming stuff a lot when we're out, AND he always has someone holdiing onto him (which I would say is fairly obvious aged 7), but STILL people don't seem to clock it iyswim.

[Jimjams2]

oh 2 shoes- I hate it when people say things like you're lucky you're dd is in a wheelchair so people know your dd is disabled. It's soooo missing the point!!! I mean I might say something like " I suppose people notice your dd's disability more easily", but "lucky"???

[Jimjams2]

2shoes- thinking about I get something similar- people will say things like "well you're lucky because your child will never get depressed". I now employ what I call the swap test, smile sweetly and say "would you like to swap?". Hmmm, no thought not!

[Jimjams2]

BH thinking about it if you email me I can send you the wording that Donna Williams gave me to put on cards to hand out- its much better than the NAS ones.

[maddiemostmerry]

I think the lady should have handled it better full stop. People do need to think before they speak, I suppose at least this lady would handle a situation much better next time.

I agree with Fio you don't really want to have to explain you childs needs when shooping etc. I often get "Isn't he highy strung" type comments which I generally agree with. I can totally block out other people though and am pretty thick skinned.

My yougest two have the same reaction to dogs, its a tough one to crack.

[COPPERfeelunderSantasTOP]

I hate it when people say in front of ds1/ds2 "Why don't you let him do XYZ?" or "Why can't he come with us?" You can't explain in front of them (ds1/ds2) that it's because of their ASD and it's very difficult then to say no.

Ds1 would have legged it out of the door or gone into full panic mode if a dog had been jumping up near him.

I hate having to explain SN to people, especially if ds1 is with me. It feels as though I'm having to do the DLA form thing again of being negative and then feeling disloyal for it.

[hortense]

Two of my children have very visable special needs and they immediately get either the "Ah bless factor" or the "you can get rid of those before they are born" comment....YES somebody realy did say that out loud whilt standing next to my husband and child.

My son who has ASD of coure looks ok except when he isn't and then we get what a naughty child look.

The real annoying thing is we often get people moving away and avoiding us when we are out together....except.....when my husband who is a church of England minister wears his dog collar then, people cann't do enough for us?!?!?!? WHY?

[amphion]

Sometimes in these situations it's enough to explain the actual problem happening rather than go into general explanations about their SN e.g. say "they have a great fear of dogs", "they have a phobia about that smell" or whatever. I've found people have understood this and I've felt less embarassed by my child's strange behaviour when he looks perfectly normal, - and haven't had to give personal info. about my child to complete strangers.

[mummy2aaron]

DS2 often spends part of any trip out on the floor screaming, trouble is dd has started copying - she is at that age. I am quite in your face about it and I wish I wasn;t dh just cringes - if i catch anyone looking or commenting to their companion I always ask if they have a problem with what my child is doing and do they often discriminate against people with special needs - I am too agressive - I also ask if they are racist too!

Perhaps I need to just chill out but I am sick of the -'he needs a firm hand' or the 'but he is so cute' comments.

TBH when I was young I had a terrible temper and Mum remembers me throwing myself on the floor screaming because I couldn't have a 'girl's world' (remember them). Any child can get worked up in any situation. I was scared of dogs too.

[theheadlessreindeer]

The woman sounded like an idiot Blossom, and it all sounded completely stressful for you. My DD is on autistic spectrum, but as she has Downs as well any "odd" behaviours are excused - sometimes when I feel they shouldn't be cos I know she's trying it on! People make so many assumptions about individuals and it just adds to the difficulty of coping with a child with SN - hope you're feeling a bit more chilled about it all xx

[SantasFattymumma]

like everyone else has said....been there!

I have pretty much got to the point where peoples comments dont even register to me anymore...unless Ds hears them.
he was being really hyper one day at Asda, not naughty just really exctiable about everythign (look mum whats that - a ceiling xx, mum whats that man wearing - a coat etc )

a woman walked past and said to her freind "oh a kid like that would drive me insane, i'd have to give him a good hiding"

Ds turned to me incredibly sad and told mem that the woman wanted to hide him and that he doesn't want to hide.


I have heard so many comments that i just get tired of explaining. iam now of the opinion that i never need to speak to these people again, chances are i shall never come across them again so it doesn't really matter if they think Ds is naughty or not.

but yes i have had some of those bang your head against a brick wall, type moments with family.

"fatty he will have to learn how to share with his people or he will never have freinds"

"yes mum, perhaps you would like to teach that amputee to climb a rope whilst your busey with the miracles"

[heavenlycara]

wow! its all soooo familiar sounding! my wee girl6yrs has gdd and has social/emotional delay of half her age and attracts sooo much attention when we are out. [not bad attention]. however, school have me down as a neurotic mother blah blah. cause she "looks normal", and that masks the disability, im discriminated against. my friends daughter has downs and she gets taken seriously although her needs are similar to my girlie. grrrrrrrrrr!

[heavenlycara]

i know you can get credit card size cards for autistic awareness and you hand one to people when they are ignorant. ive heard parents say how much of a godsend they are.

[theheadlessreindeer]

The cards may be an option for some people Cara. I know what you're saying about the comparison between you and your friend who's DD has Downs though. But saying that, I was on a tram with my DD (who has downs) and she was in a major buggy, not cos she can't walk but cos sometimes, with 2 other DD I just need to contain her and do shopping, and some stupid woman said she's a bit big to be in a buggy isn't she? I thought Jesus how obvious do you have to be!!

[heavenlycara]

we have a major buggy too due to hypotonia and people do hold back a bit then. however, we had a wheelchair in the summer after a tendon transfer to correct clubfeet, and people bent over backwards to help! luckily ive had no bad experiences with the public but as she gets older, im sure her behaviour will be less acceptable and ill get the comments then. my main problem is getting teachers to accept the hidden disabilities.