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invisble disabilities arent they just

(44 Posts)
Fio2 Tue 21-Jun-05 21:48:25

i mean how long before they even see? its no good going on about strangers, what about family. My head is about to explode. My SIl and even my own bloody Mother has said that dd is ok, not much to worry about today. Please tell me its not just mine that do this


I know SIL actions though have an ulterior motive but anyhow

TheRealMrsF Tue 21-Jun-05 21:50:22

Grrrrrrrrrrrrh! Why do they do it to us!

I get sick and tired of hearing how "they're no problem when they are with us" (which is their crafty way of reminding me IT's MEEEEEEEEEEEEE!)

eidsvold Tue 21-Jun-05 23:14:03

because they would have to do some thinking and learning and changing if they accepted their granddaughter/niece. They would have to modify their behaviour..... I went to a makaton course and there were a few parents who were also lamenting that their families also behaved like yours.......

My dm is a classic - I have shown her makaton signs to use with dd1 and asked that she do it. Her reply - she ( my mum) should just speak with dd as she has to learn to talk. ARGGGGGGGGHHHHHHHHHHHH I just told YOU that using the signing and speaking will help dd1 learn to speak much quicker than just speaking at her. Sometimes she has a touch of glue ear and may not be able to hear you properly so if you sign she has understanding!!!!!!! BUT it is hard for my mum to get her head around dd1 and down syndrome - I strongly suspect she had not read any of the literature that we have given her to help her understand what is going on - that I know.....

So when dd1 signs to her - I have to be there to translate if it is one of dd1's signs that she is not speaking with yet!!!

You are definitely not the only ones......

coppertop Tue 21-Jun-05 23:16:45

I'm still waiting for someone in my family to use the word AUTISM!! Grrr!

haven Wed 22-Jun-05 03:17:57

ds is coming out, but to you moms with severe disabilities hats off to you. just in the one year of fighting doctors and "family" i can't imagine. even ds speech therapist said that if i wasn't as pushy as i am he probably would not be doing all that he is. but, .................everyone said he gonna get it. nothing is wrong. yada yada yada blah blah blah. ds still falls wayyyy more than most, and still has akward ways, but nothing i can't handle on my own.

so again ladies, and gents. the good Lord sees you.and your children know that you love them, so try not to mind what others do or say

KarenThirl Wed 22-Jun-05 06:51:21

It took a report from school last November (at the parent's meeting), saying that J had 'definite social and emotional development problems' to make my family sit up and take note. Even dh. Up till then they'd all been saying he was just 'a bit lively' but could't see the wider issues. So glad I stuck to my guns and insisted on the second assessment. They're a lot better now though - MIL has J for tea on Fridays and has stripped her food cupboards of crap etc, and has offered to do anything they can to make things better for us. Even dh is trying his best now!

onlyjoking Wed 22-Jun-05 08:18:37

argh but you see my FIL doesn't want to invest his time on finding out about Autism cos of course my three will grow out of it
and as my dear MIL says they are great my three kids and so well behaved you can take them anywhere, which of course begs the question why the ** don't you then,in fact my three are so good they dont get to go to spain this summer with grandparents, the other 4 grankids are going thou good job my lot dont see the injustice really

TheRealMrsF Wed 22-Jun-05 09:42:56

another pet hate i have is that people insisting that they treat my autistic sons no diffetrent to any other child....

Now to some degree i agree...otherwise you'd get "it's not my fault ...it's my asperger's"...and that is not ok.

BUT.......... my family's idea of this is that tehy don't use any of the strategies that prevent the boys misunderstanding situations etc....and therefore the result is chaos ...and that's when my MIL will say "i treat them like the rest" ...and shout at them....saying things like "you are old enough to know better" or "how many times do i have to tell you?"....

then there's the 'practical' side...all my boys still use beakers with lids/sports bottles....they can use an open cup...but THEY prefer not....so at MIL she insists they have a glass like everyone else....and she fills it to the top...she then moans like hell about tom being 11 and making more mess than a baby...."he should be able to drink from a glass without spilling it" (well....she should see him eating a chocolate muffin....he ends up with it all round his mouth...and his teeth end up covered in a film of muffin!!!! )

I want to SCREAM at her.....

"I know all children are SPECIAL
But my boys HAVE SPECIAL NEEDS!
They are AUTISTIC!
I KNOW you think by "treating them the same as others" that you feel you are being "Fair".....BUT.... would you insist a child who could not physically do something HAVE to join in ALONE with other kids...or would you HELP and make ADJUSTMENTS so they could join in?!!!!!

There is a Tshirt i want to by ...but i want to change the wording....

The original tshirt says
"I'm Not just SPOILED...I'm AUTISTIC too!"

But....I would prefer
"My Child's Not Spoiled....He's Autistc- Can't You See?"

But all that stops me getting one made is that i don't want to upset any other parents who may have Autistic children...but who are not so open about it. I talk about it openly to anyone i feel the urge to...but i know that not everyopne feels the same.

Sax Wed 22-Jun-05 09:53:28

My mums tact is to ask 'have you watched little angels' or 'oh super nanny is on tonight have you caught any of them' bloody annoying - especially when she argues with ds1 too. He hates losing at games so half the time to stop any anguish, I often lose and occassionally win - no Mother has to always win and shout about it Horrrahhh I won. Of course she then swans back to her little cosy life and I am left with a sulky, wound up child. AAAAHHHHhhhhhhhh.

MandM Wed 22-Jun-05 10:08:02

Mrs F - get the t-shirt made, go on, you know you want to!!!!! Then wear it under a shirt or jumper and just 'flash' it whenever you feel the urge!

TheRealMrsF Wed 22-Jun-05 11:15:57

that's a good idea!!!!

QueenOfQuotes Wed 22-Jun-05 11:20:59

Gosh it must be horrible for you all

Have to say since being on MN, and reading the threads on this topic I'm a lot more 'thoughtful' when I see kids being "naughty" when I'm out and about, I no longer 'judge' but consider the fact there perhaps there could be 'hidden' disabilities.

I know it's not the quite same thing, as she's my mum and not a child. But she's got Parkinson's Disease, and it's taken until last year for my Dad to 'realise' that some of the traits of it are simply that - traits - no my mum being deliberately 'slow', and "falling asleep"..

Sax Wed 22-Jun-05 11:28:57

QoQ - you saying about thinking more when you see 'naughty' children but I find the worse are the older generation - they often make comments to my ds1 like - you should listen to your mother and I cringe becasue I never quite know what his response is going to be (normally a rasberry or a tongue out) which just makes it more embarressing for me! I don't find those interferring so and sos very productive to my day when its hard enough shopping etc.

coppertop Wed 22-Jun-05 13:24:55

Supernanny seems to have turned everyone into 'experts' overnight. I still remember last summer when ds1 was having a raging meltdown in the park. I used the deep pressure hug to calm him down - only to have my mother pipe up "You're doing it all wrong! You're just rewarding him for being naughty. On Supernanny they...." Arrrggghhh! She'd just watched him throw himself off the top of a high climbing frame without feeling the slightest bit of pain, yet still couldn't see that he was different. All she could see was that he was screaming next to the play equipment and so therefore must be screaming because he wanted to go back on it. I had the last laugh though. The deep pressure worked and within seconds ds1 was smiling away and trotted past all the play equipment without even bothering to look at it.

Cosmo74 Wed 22-Jun-05 14:34:42

Thank God it is not just me - my MUM and some of my sisters are the same - 'Oh he will grow out of it' or 'he just needs time to settle down', 'he is no different than the rest of the grandkids' but do they not realise that when his younger nephew can sit and concecntrate without running around screaming all the time that yes there is a difference. Surprising my MIL has accepted what little I have told her and she agrees that maybe there is something there and the assessment will be good for DS whereas my Mum says well at least the school will get off his back when he gets the assessment - she really thinks it is going to come back and say that everything is fine - I guess she will get a real shock when we find out, but hey I bet she still won't accept that then.!!!

tallulah Wed 22-Jun-05 18:20:20

Do you know, reading this I have just had a revelation.. I've had my mum 'on board' from the beginning when there was 'something wrong' with ds1 & no-one knew what. She's always the first one to say 'these people ought to borrow J for a day, then tell us ADHD doesn't exist'. My dad OTOH would not accept that there was anything wrong, and the month before he died he shouted at ds1 in a restaurant for dropping his cutlery 'have you got weak hands or something'. he was shocked when me & mum shouted back in unison 'yes he has'

Anyway, he died before ds2 was dx with ADHD. So many times I've railed against him leaving us & thought how much we've all missed out. But it's just dawned on me that he would never have accepted ADHD as a real condition, and it would have been down to our ineffectual parenting.... Isn't it odd when your mind just makes that little leap.. after all this time..

TheRealMrsF Wed 22-Jun-05 22:17:03

tallulah...that's like me when i suddenly realised that i am probably AS like my boys...and io siuddenly was able to see my childhood differently...i had hated my parents for years...and suddenly i realised that they just did not understand me.

Now, i can even see 'it' in my parents! (maybe 1 has 'it' maybe both!!!)....and it makes it easier being round them with the insight i have...but like your dad...my parents will NEVER see the Aspergers/ADHD...and i believe in my case that is because it's how they are too...and because they moulded me as a child...and i refuse to do that to my boys...they see my boys as 'spoiled' etc.

what my parents will never comprehend is how miserable THEY made me (albeit unknowingly) by forcing me to visit relatives...breaking my routines etc

hope that makes sense!!!

coppertop Wed 22-Jun-05 22:28:08

MrsF

Davros Wed 22-Jun-05 23:01:17

Both sides of our families are fine about accepting the dx and have always been but none of them would ever DO anything to help us. Except my sister who would but works part-time, has a DH who had a stroke a couple of years ago, has an 8 yr old DD and lives an hour's drive away!! My dad would have been great too but he died when DS was 5 mos old So we don't get the crap that a lot of you get but we don't get any help or support either....... moan, groan

monica2 Wed 22-Jun-05 23:22:07

Most of my family don't mention "the A word" , in fact in attempt to overcome this I sent my mum one of dd's reports last year, which showed many of her difficulties at school which my family have never witnessed and my mum asked my sister why I had sent it to her??? But my mum, dad and sister all have lots of traits, and have only looked after dd 6 times in 10 years!! DH can be very AS too, sometimes I feel that all my (what should be close) relationships are effected by autism

Davros Wed 22-Jun-05 23:26:29

Monica

jenkins88 Thu 23-Jun-05 01:31:48

I saw my GP today because I have been feeling so down about DS and blaming myself for his problems. My mum had these words of wisdom for me afterwards 'Don't feel guilty, it is your fault but only because you haven't let him mix with other kids enough'. Then, to cheer me up, she showed me the swing that my dad has put in her garden for DS and his cousin (though I expect it was actually just for his cousin, as my dad has never even seen DS, but see's my niece all the time). As soon as I saw it my heart sank as it just had a flat plastic seat and DS still has to use a baby swing. She put him on it but he kept slipping off and I could see that she was annoyed with him, that my dad had gone to all this trouble and he was too clumsy to be able to use it. Then she started talking about the 'peculiar man with the enormous head' that lives down her road. DS has a funny shaped head and I've gone through hell since he was born worrying about it, and she knows that this kind of topic really hurts me.

At the moment I feel so sad. Like the world is a f*cking horrible place and my mother (who thinks she is so sensitive and caring) is one the reasons for it.

Feel better now I've got that off my chest.

Davros Thu 23-Jun-05 09:14:22

jenkins, sorry to say this but what a cow! How insensitive can you get? My MIL always thought she was a sweet, caring and sensitive person but she was really a tactless, self-centred, vain pain! Mind you, now I feel guilty saying that, she did love DS although she didn't understand him.
Can you buy some of that non-slip stuff, lakeland do it, to put on the swing seat? One of the girls with CP that goes to our horse riding session always has a little sheet on the saddle.

jenkins88 Thu 23-Jun-05 13:57:24

Thanks Davros. I'll have a look over at Lakeland.

coppertop Thu 23-Jun-05 14:05:57

Jenkins - "It's your fault because you didn't let him socialise more" is right up there with "It's your fault because you didn't talk to him enough" and "It's your fault because you talked to him too much."

It's funny how the negative stuff is always our fault but the positive stuff is somehow always a fluke. Ds can't talk? - Must be your fault. Ds can't use his hands very well? - Must be your fault. Ds can play Mozart while upside down and juggling plates and saucers on a stick and reciting the complete works of Shakespeare? - Oooh. Isn't that lucky!

(Not that either of my boys play, piano, juggle or recite Shakespeare of course.....

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