a beef about hidden dissabilities

[JASMAK]

Sometimes I wish my daughter 'looked' disabled. Don't get me wrong, my biggest wish is that she wasn't disabled at all...of course! But, today, we were at an extremely busy waterpark. Lots of parents, moms, dads, and lots of summer camps, who also were training with teenagers to be future daycamp leaders. My daughter, who has ASD, was supposed to go change into her swim suit. I made sure it was all out the right way and she told me she was going to do it by herself. She was gone about 2 minutes, and she all of a sudden appeared, right before me in the middle of the park, stark naked!!! My daughter is 6 years old...but is the size of a 8 or 9 year old girl. She was just dancing around, naked in front of me, and I had to grab her and yank her down so I could cover her up. She had NO idea that what she was doing was innapropriate. A whole bunch of kids were laughing their heads off, including my own son. I felt like I should go up and say, "no...she doesn't know any better, she has autism!" But of course, I didn't. Because I can't go around explaining everything to strangers. But, that is when I wish people just knew and didn't judge her, or me as a mom.

 

[fairywings]

I can empathize somewhat . I took my son to a waterpark last year and cause he was only just over one people kept looking at his gastrostomy. And instead of staring I wish they had asked what was up instead of just gawping! And recently a girl with special needs was screaming right in the middle of Asda, she has special needs, but everyone was staring. People really should not judge what they don't know.

Buuuutttt .... I also go with the philosophy, you will never see those people again so who cares what they think? YOU know the truth and that is all that matters. But your son should not laugh. I would not like that.

 

[JASMAK]

thanks for replying. sorry for the loss of your son. i gave my son an earful, but i guess people would have laughed no matter what. i am probably just sensitive about it.

 

[fairywings]

Thanks. Yeah you are bound to be sensitive about it. If they can't see something they live in bliss of it not happening even though you know it is. From all accounts my son looked normal. But he had stomach failure, seizures and was blind, could not eat, smile, laugh, cry . . . but he looked normal. So I really can empathize to a certain extent.

And at the time, when he would have seizures where he would scream out and people would look like they were thinking "isn't she going to comfort him"? that was hard because I just had to let it pass.

I guess when I look back it has toughened me up and now I don't care what people think. xxx

 

[BabyBoo36]

I know what you mean. Freya has spina bifida and is awaiting an op to remove a golf ball sized cyst from her spine. Because of this, she can't lie on her back for long periods, and has to sleep on her side, but other than that, looks completely "normal". I've lost count of the amount of busy-bodies who have tutted at me when we're out with the pram, or brazenly told me I'm putting her at risk of SIDS because she's not on her back. People should realise they may not know the whole story before commenting.

x

 

[fairywings]

Awww BabyBoo hope the op to remove the cyst goes well. She looks so adorable in your avatar picture. xx

 

[BabyBoo36]

Thank you. She's really very good - she had an ultrasound of her bladder and kidneys the other day (bladder dysfunction is usually pretty much a given with the most severe form of SB) and she cooed and smiled all the way through. Her op is pencilled in for 2nd Sept xx

 

[Septie]

Not sure what to say. The teenage grandson of friends of my parents has a severe case of Downs and has a tendency to strip naked in front of people. It's terrible (but in his case, at least the disability is visible).

 

[Lisa2701]

I can sympathise here. My son is 6 but the size of a 8-9 year old and is diagnosed with classic autism and I sometimes think it would be easier if his disability was visual.

My son goes to a mainstream school and I take every opportunity i can to get him interacting with his peers in a controlled environment, so when after school football club came up I jumped at the chance. However, the teaching assistant who supervises the kids while they get changed is a real battle axe and I really dislike her (she helps out in my sons class a lot). So here I was standing outside the class with all the other parents while the kids got changed and I heard all the kids laughing. Next thing I know she comes out and tells me that my son had pulled his penis out through the slit in the front of his boxers in front of the rest of the kids ...she was quite clearly disgusted by this, so i went in to see to it and my son had already gotten dressed by this point. I asked my son why he had done such a thing and he replied that there's a hole in his boxers at the front and thats what its meant for, he was just checking it worked (he had not long started wearing boxers shorts)... I felt that (for a child with ASD) this was a fair comment to make and i could see his logic behind it, even if it was "socially" wrong. I tried to explain to him that he couldn't do that etc etc but the teaching assistant was clearly very annoyed by it and went on about how disgusting it was, and he'd not get to go to football lessons if he done it again etc etc .... she really upset my son. i was very close to making a complaint about her but knowing the head teacher she would have had the same attitude as the teaching assistant so I decided complaining would get me no where.

i have had several situations where my son has done things like, answered the door naked, went to play on his trampoline naked etc, he has really difficulties with clothes as he has sensory hypersensitiveness and so takes them off as soon as he feels he can, unfortunately he doesn't always get it right and sometimes we end up with him semi naked in others peoples houses (usually he'll go to the toilet and come out with nothing but a t-shirt on) etc, some people don't mind and take no notice and other people react as though they have a 26 year old walking through their house naked. Don't get me wrong, my son has to learn at some point that he can't strip off and wander about naked but some peoples reactions are just a bit OTT. We have started insisting that he wears at least boxers and a t-shirt when we have visitors in our house too and we have noticed that he is becoming a little more aware recently. He asked my best friend, who is used to the way he is, to not look at him while he was getting changed into his jammies... its a step in the right direction i think??

For me, the reaction of a complete stranger doesn't upset me, they don't know, they don't understand and they don't know how wonderful my little boy is or the struggles/achievements he has on a daily basis. The people who really upset me is the people who DO know but don't care to try understand, the people that know my son and his struggles and the people who know and understand about ASD but still expect him to be "normal". When they judge him it makes me really furious and I have actually cut a couple of family members out of my life as they were making a habit of it.


People are just ignorant, they don't understand how their ignorance can really upset and isolate a family who has a child with special needs. Its not easy at first but I have eventually learned to take no notice of those who don't know or are simply ignorant/judgemental.

 

[Midnight_Fairy]

I can sympathise here. My son is 6 but the size of a 8-9 year old and is diagnosed with classic autism and I sometimes think it would be easier if his disability was visual.

My son goes to a mainstream school and I take every opportunity i can to get him interacting with his peers in a controlled environment, so when after school football club came up I jumped at the chance. However, the teaching assistant who supervises the kids while they get changed is a real battle axe and I really dislike her (she helps out in my sons class a lot). So here I was standing outside the class with all the other parents while the kids got changed and I heard all the kids laughing. Next thing I know she comes out and tells me that my son had pulled his penis out through the slit in the front of his boxers in front of the rest of the kids ...she was quite clearly disgusted by this, so i went in to see to it and my son had already gotten dressed by this point. I asked my son why he had done such a thing and he replied that there's a hole in his boxers at the front and thats what its meant for, he was just checking it worked (he had not long started wearing boxers shorts)... I felt that (for a child with ASD) this was a fair comment to make and i could see his logic behind it, even if it was "socially" wrong. I tried to explain to him that he couldn't do that etc etc but the teaching assistant was clearly very annoyed by it and went on about how disgusting it was, and he'd not get to go to football lessons if he done it again etc etc .... she really upset my son. i was very close to making a complaint about her but knowing the head teacher she would have had the same attitude as the teaching assistant so I decided complaining would get me no where.

i have had several situations where my son has done things like, answered the door naked, went to play on his trampoline naked etc, he has really difficulties with clothes as he has sensory hypersensitiveness and so takes them off as soon as he feels he can, unfortunately he doesn't always get it right and sometimes we end up with him semi naked in others peoples houses (usually he'll go to the toilet and come out with nothing but a t-shirt on) etc, some people don't mind and take no notice and other people react as though they have a 26 year old walking through their house naked. Don't get me wrong, my son has to learn at some point that he can't strip off and wander about naked but some peoples reactions are just a bit OTT. We have started insisting that he wears at least boxers and a t-shirt when we have visitors in our house too and we have noticed that he is becoming a little more aware recently. He asked my best friend, who is used to the way he is, to not look at him while he was getting changed into his jammies... its a step in the right direction i think??

For me, the reaction of a complete stranger doesn't upset me, they don't know, they don't understand and they don't know how wonderful my little boy is or the struggles/achievements he has on a daily basis. The people who really upset me is the people who DO know but don't care to try understand, the people that know my son and his struggles and the people who know and understand about ASD but still expect him to be "normal". When they judge him it makes me really furious and I have actually cut a couple of family members out of my life as they were making a habit of it.


People are just ignorant, they don't understand how their ignorance can really upset and isolate a family who has a child with special needs. Its not easy at first but I have eventually learned to take no notice of those who don't know or are simply ignorant/judgemental.

very good post hun. My son will often be found on the trampoline naked

 

[JASMAK]

I can sympathise here. My son is 6 but the size of a 8-9 year old and is diagnosed with classic autism and I sometimes think it would be easier if his disability was visual.

My son goes to a mainstream school and I take every opportunity i can to get him interacting with his peers in a controlled environment, so when after school football club came up I jumped at the chance. However, the teaching assistant who supervises the kids while they get changed is a real battle axe and I really dislike her (she helps out in my sons class a lot). So here I was standing outside the class with all the other parents while the kids got changed and I heard all the kids laughing. Next thing I know she comes out and tells me that my son had pulled his penis out through the slit in the front of his boxers in front of the rest of the kids ...she was quite clearly disgusted by this, so i went in to see to it and my son had already gotten dressed by this point. I asked my son why he had done such a thing and he replied that there's a hole in his boxers at the front and thats what its meant for, he was just checking it worked (he had not long started wearing boxers shorts)... I felt that (for a child with ASD) this was a fair comment to make and i could see his logic behind it, even if it was "socially" wrong. I tried to explain to him that he couldn't do that etc etc but the teaching assistant was clearly very annoyed by it and went on about how disgusting it was, and he'd not get to go to football lessons if he done it again etc etc .... she really upset my son. i was very close to making a complaint about her but knowing the head teacher she would have had the same attitude as the teaching assistant so I decided complaining would get me no where.

i have had several situations where my son has done things like, answered the door naked, went to play on his trampoline naked etc, he has really difficulties with clothes as he has sensory hypersensitiveness and so takes them off as soon as he feels he can, unfortunately he doesn't always get it right and sometimes we end up with him semi naked in others peoples houses (usually he'll go to the toilet and come out with nothing but a t-shirt on) etc, some people don't mind and take no notice and other people react as though they have a 26 year old walking through their house naked. Don't get me wrong, my son has to learn at some point that he can't strip off and wander about naked but some peoples reactions are just a bit OTT. We have started insisting that he wears at least boxers and a t-shirt when we have visitors in our house too and we have noticed that he is becoming a little more aware recently. He asked my best friend, who is used to the way he is, to not look at him while he was getting changed into his jammies... its a step in the right direction i think??

For me, the reaction of a complete stranger doesn't upset me, they don't know, they don't understand and they don't know how wonderful my little boy is or the struggles/achievements he has on a daily basis. The people who really upset me is the people who DO know but don't care to try understand, the people that know my son and his struggles and the people who know and understand about ASD but still expect him to be "normal". When they judge him it makes me really furious and I have actually cut a couple of family members out of my life as they were making a habit of it.


People are just ignorant, they don't understand how their ignorance can really upset and isolate a family who has a child with special needs. Its not easy at first but I have eventually learned to take no notice of those who don't know or are simply ignorant/judgemental.

Thanks hon. x x

 

[mom22boys]

Sometimes I wish my daughter 'looked' disabled. Don't get me wrong, my biggest wish is that she wasn't disabled at all...of course! But, today, we were at an extremely busy waterpark. Lots of parents, moms, dads, and lots of summer camps, who also were training with teenagers to be future daycamp leaders. My daughter, who has ASD, was supposed to go change into her swim suit. I made sure it was all out the right way and she told me she was going to do it by herself. She was gone about 2 minutes, and she all of a sudden appeared, right before me in the middle of the park, stark naked!!! My daughter is 6 years old...but is the size of a 8 or 9 year old girl. She was just dancing around, naked in front of me, and I had to grab her and yank her down so I could cover her up. She had NO idea that what she was doing was innapropriate. A whole bunch of kids were laughing their heads off, including my own son. I felt like I should go up and say, "no...she doesn't know any better, she has autism!" But of course, I didn't. Because I can't go around explaining everything to strangers. But, that is when I wish people just knew and didn't judge her, or me as a mom.

I understand!!!! My son has Down Syndrome so people look at him and just know that he is more than likely not going to act his age. HUGS!!!!!!

 

[morri]

Good that I grew up in a naturalists swimming and family club where all this mentioned is not a problem (and a closed backyard)