Bride Excludes Severely Autistic Sister from Wedding

DisneyOma

DIS Veteran
Joined
Jul 27, 2015
Your students are very fortunate to have access to such high-quality interventions and supports. It's important work you're doing. :flower3:
Not without merit to what you're talking about but parental attitudes account for a lot as well.
We are lucky that here in my little city in MA we have a great support staff for a variety of levels of ability in our public school system. We can also keep students until they are 22 years old, which is not the norm (usually it's the 21st birthday, and out the door!) I've worked all levels, and have seen so many wonderful successes, large and small. My favorite moment was when one of my nonverbal students used a combination of sign language for the very first time to communicate, even though she told me off, LOL! It was the sign for "forget" and then "you", basically telling me to F-off. I was so excited when we got back to the classroom, she couldn't understand why I was so happy :rotfl2: I did have to explain how it wasn't nice to say that to someone, but then we got to work on some more appropriate communication. But she had used two signs together to let me know how she was feeling - imagine not being able to tell someone how you feel.

Parent attitude trumps all of the above, I agree. I've seen it work both ways - and it's so frustrating to have a parent think their kid can't do anything just because the kid has a disability.
 
  • GreatLakes

    DIS Veteran
    Joined
    Aug 6, 2015
    The bride is right. If the sister can't behave herself she is the problem and it wasn't her sister's job to correct the behavior and she shouldn't have to pay the price for her parent's failings.

    I equate it to a sibling that is an alcoholic not being invited to a wedding. The bride and groom shouldn't sacrifice their day for the failings of their family.
     

    barkley

    DIS Veteran<br><font color=orange>If I ever have a
    Joined
    Apr 6, 2004
    If the sister has learned about kissing, then the sister can learn about not kissing. Both are learned behaviors. I've worked with a student with similar issues, and the behavior therapist was able to do wonders.
    behavior therapists can work wonders, but wonders don't work on every person on the spectrum. with the kissing and 'inappropriate' physical contact aspect it's difficult unless a person has been totally isolated from all television, books and other media for them to not equate kissing and hugging as 'normal' and celebratory human interaction (even simple very early childhood geared disney and pbs shows/movies/picture books show princesses and princes hugging/simple kisses, moms and dads, grandmas and grandpas....). unless they've had what most of us deem as traditional appropriate physical affection withheld from themselves from infancy by their parents, siblings and other family members their brains react to endorphins the same as neurotypical folks (exception-those on the spectrum who abhore physical contact). throw in the normal hormones that occur with puberty and continue to impact all humans the remainder of their lives and you've got the identical and in some cases hyper-elevated levels of human desire. difference being-it's not as simple as 'learning' not to do something physically inappropriate. those of us with kids on the spectrum all have different experiences b/c as we say 'if you know one person on the spectrum, you know one person on the spectrum' but after spending YEARS in group therapy with many, many parents of teens on the spectrum i can honestly say that this is an area where despite the best behavior therapy it's a continuing concern that with some on the spectrum that is simply not able to be behaviorally modified. we as parents try our best, akin to the movie '50 first dates'-starting every day with reminders of appropriate behaviors, correcting inappropriate, explaining again (multiple times often) the why's, listening to their often detailed and compelling arguments (for the millionth time)-but there's no relearning some behaviors esp. when biological forces can cause them to greatly ebb and flow.


    fwiw-i'm team bride all the way.
     

    LovesTimone

    Christmas Day 2017
    Joined
    Apr 29, 2009
    Having been the much younger, neuro-typical sibling of a profoundly mentally handicapped brother, I would bet that's not the case. I'd wager there have been years and years and years of "sensitivity" to the needs of her sister, and very frequent giving way to her, both out of duty and out of love. That's just the way it is in families with a single, severely disabled member. Under the circumstances described, it's not callous at all for the bride to want one single, special day without those stresses.

    I would bet that's not the case either. My parents were wonderful, loving and engaged with me; always provided for me physically and emotionally and gave me a far happier childhood than many have had. BUT - BIG BUT...there was not one single day of my life that my needs or wants were put before those of my brother - never. All my milestone events and yes, even my wedding, were expected to take him into account, sacrificing wherever needed. I'd be lying if I said it wasn't exquisitely painful at times.

    They didn't do it to hurt me, they often didn't even realize, and I resigned myself to it from the youngest of ages. Their commitment to his well-being was absolute; they saw it as their primary duty and mission in life and it created huge blind spots. They most certainly though were not "horrible" people. And I'd caution against so harshly judging anybody without having walked a mile...

    First off a hug to you...

    My friends who have a adult child on the spectrum. She is higher functioning.

    Right before Covid hit, they wanted to sit down with their other children, and their spouses... Which apparently did not go so well... She said that it was a huge disappointment... That they refused to sit down or even come to the house... So over zoom her and DH talked to them about their wishes, and such and how they are to split the care of her DD on the spectrum. To which they said No, we are not taking care of her, you will have to find some other avenue for her care but its not us... Apparently things got very heated, and their other children just got everything off their chest... and alot of pain and anger came to light from their childhood to present day... To which she doesn't understand why they resent their sister so much..

    Then she found out, that for the last 10 years, that they (meaning the other kids and families) all get together for holiday's, and other celebrations all the time... all the while telling them that they can't make it this year, or whatever reason.
    She said that her oldest son got mad because she (the grandmother) took away a toy and gave the daughter on the spectrum one of the little kids toys ( 3 years old) who started crying and went and told her dad...to which her son took it back from the sister on the spectrum, and they left...all of them left... and she said they were being childish, and that they know that their sister has special needs and the all the grandkids need to understand that, and get use to giving her what she wants...

    Since the Zoom call, Their other children have broken off all contact with them...
     

    wenrob

    DIS Veteran
    Joined
    Apr 14, 2008
    First off a hug to you...

    My friends who have a adult child on the spectrum. She is higher functioning.

    Right before Covid hit, they wanted to sit down with their other children, and their spouses... Which apparently did not go so well... She said that it was a huge disappointment... That they refused to sit down or even come to the house... So over zoom her and DH talked to them about their wishes, and such and how they are to split the care of her DD on the spectrum. To which they said No, we are not taking care of her, you will have to find some other avenue for her care but its not us... Apparently things got very heated, and their other children just got everything off their chest... and alot of pain and anger came to light from their childhood to present day... To which she doesn't understand why they resent their sister so much..

    Then she found out, that for the last 10 years, that they (meaning the other kids and families) all get together for holiday's, and other celebrations all the time... all the while telling them that they can't make it this year, or whatever reason.
    She said that her oldest son got mad because she (the grandmother) took away a toy and gave the daughter on the spectrum one of the little kids toys ( 3 years old) who started crying and went and told her dad...to which her son took it back from the sister on the spectrum, and they left...all of them left... and she said they were being childish, and that they know that their sister has special needs and the all the grandkids need to understand that, and get use to giving her what she wants...

    Since the Zoom call, Their other children have broken off all contact with them...
    I think the assumption that the siblings or other family members will just take over care is not fair. To then invalidate their feelings and call them selfish is worse. No wonder there is resentment. Not the same situation but I have been put in this type of position by my parents (and their siblings) in regards to my grandmothers and later by my stepmother in regards to my father. I have a LOT of feelings/baggage on the subject. Of course I did not abandon my grandmothers or my dad but I damn sure feel like the people who were supposed to take care of it did. IMO opinion it’s up to the parents of these individuals to make arrangements to ensure their care and a burden they should not be putting on someone else.
     
  • AgentMama

    DIS Veteran
    Joined
    Apr 5, 2016
    First off a hug to you...

    My friends who have a adult child on the spectrum. She is higher functioning.

    Right before Covid hit, they wanted to sit down with their other children, and their spouses... Which apparently did not go so well... She said that it was a huge disappointment... That they refused to sit down or even come to the house... So over zoom her and DH talked to them about their wishes, and such and how they are to split the care of her DD on the spectrum. To which they said No, we are not taking care of her, you will have to find some other avenue for her care but its not us... Apparently things got very heated, and their other children just got everything off their chest... and alot of pain and anger came to light from their childhood to present day... To which she doesn't understand why they resent their sister so much..

    Then she found out, that for the last 10 years, that they (meaning the other kids and families) all get together for holiday's, and other celebrations all the time... all the while telling them that they can't make it this year, or whatever reason.
    She said that her oldest son got mad because she (the grandmother) took away a toy and gave the daughter on the spectrum one of the little kids toys ( 3 years old) who started crying and went and told her dad...to which her son took it back from the sister on the spectrum, and they left...all of them left... and she said they were being childish, and that they know that their sister has special needs and the all the grandkids need to understand that, and get use to giving her what she wants...

    Since the Zoom call, Their other children have broken off all contact with them...
    Sounds like your friend doesn't understand and isn't willing to understand her other children's feelings and isn't willing to see any point of view but her own. Its not surprising that all of her children are refusing to care for a sibling. To take a toy away from a toddler and give to the sibling and expect the toddler to understand is unfair, I'm sure this is just one example of probably years of similar unjustices.

    People who regularly cross other people's boundaries are often surprised when those people finally have enough and speak up for themselves.
     

    TheIncredibles!

    Winner (?) of the Crazy MIL Award
    Joined
    Nov 7, 2010
    As the mom of a cognitively impaired 23 year old young man with some sensory issues... I can say that we parents MUST prepare our children for the world, we cannot prepare the world for our children. And yes this means if our children are INCAPABLE of behaving in a manner that is socially expected in a situation, then they should not be put into that situation PERIOD.
     
  • DLgal

    DIS Veteran
    Joined
    Feb 12, 2013
    As the mom of a cognitively impaired 23 year old young man with some sensory issues... I can say that we parents MUST prepare our children for the world, we cannot prepare the world for our children. And yes this means if our children are INCAPABLE of behaving in a manner that is socially expected in a situation, then they should not be put into that situation PERIOD.
    Amen. My only 2 sons have autism and have varying levels of need. We have missed out on a LOT of events over the years (including weddings and funerals) because our boys were simply unable to handle them and we didn't want to cause either them or anyone else stress. It is what it is.

    When you are a parent of a child with special needs, you have to leave what YOU want out of the equation. It's all about what would be best for:

    1. Your child
    2. The other people involved

    Sadly, it's the parents that can't accept this reality that end up the most miserable when faced with this kind of situation.
     

    DLgal

    DIS Veteran
    Joined
    Feb 12, 2013
    I think the assumption that the siblings or other family members will just take over care is not fair... IMO opinion it’s up to the parents of these individuals to make arrangements to ensure their care and a burden they should not be putting on someone else.
    Absolutely right. It is wrong to just assume a family member will step up in your absence. This is one of those things parents need to ASK about, not just dictate. As our only 2 children are both disabled, we have had to think about this at length. When they were little, I asked both of my sisters if they would be WILLING to take them and raise them if something happened to both my husband and I. One said yes, absolutely. The other said no. I harbor no ill will towards the sister who said no. We set up our life insurance and other financial assets to transfer to my sister who said yes, so that their care would never be a financial burden. We made sure to have enough insurance money for a lifetime of care for them. That was OUR responsibility and we took care of it when the kids were babies/toddlers. The last thing I would ever want to do is just assume someone would be willing to step up. I wouldn't be able to sleep at night.
     

    TheIncredibles!

    Winner (?) of the Crazy MIL Award
    Joined
    Nov 7, 2010
    Absolutely right. It is wrong to just assume a family member will step up in your absence. This is one of those things parents need to ASK about, not just dictate. As our only 2 children are both disabled, we have had to think about this at length. When they were little, I asked both of my sisters if they would be WILLING to take them and raise them if something happened to both my husband and I. One said yes, absolutely. The other said no. I harbor no ill will towards the sister who said no. We set up our life insurance and other financial assets to transfer to my sister who said yes, so that their care would never be a financial burden. We made sure to have enough insurance money for a lifetime of care for them. That was OUR responsibility and we took care of it when the kids were babies/toddlers. The last thing I would ever want to do is just assume someone would be willing to step up. I wouldn't be able to sleep at night.

    My disabled child is my oldest. We have a DD20 and DS18 as well. When he was 8 our youngest told me his brother would live with HIM one day, he was going to buy a big farm with lots of land so that his brother could drive a golf cart all he wants around the property. 10 years later if you ask him, now at 18 and a freshman in college, yes he will tell you that is still HIS plan. They have a brother plan. My husband and I are not involved at all in this plan. :rotfl2: We have no clue when it will start, when he will take over, or even IF.. but they have their life laid out and it makes my heart swell every time they talk about it.
     

    GreatLakes

    DIS Veteran
    Joined
    Aug 6, 2015
    First off a hug to you...

    My friends who have a adult child on the spectrum. She is higher functioning.

    Right before Covid hit, they wanted to sit down with their other children, and their spouses... Which apparently did not go so well... She said that it was a huge disappointment... That they refused to sit down or even come to the house... So over zoom her and DH talked to them about their wishes, and such and how they are to split the care of her DD on the spectrum. To which they said No, we are not taking care of her, you will have to find some other avenue for her care but its not us... Apparently things got very heated, and their other children just got everything off their chest... and alot of pain and anger came to light from their childhood to present day... To which she doesn't understand why they resent their sister so much..
    I'd say one reason is the example below:

    and she said they were being childish, and that they know that their sister has special needs and the all the grandkids need to understand that, and get use to giving her what she wants...

    Since the Zoom call, Their other children have broken off all contact with them...
    Just from your little snippet I understand the frustration. This sentence alone:

    So over zoom her and DH talked to them about their wishes
    tells me they never bothered to let the other children be part of the decision making and assumed they would just go along with whatever their parents' plan was.
     
    Last edited:

    DLgal

    DIS Veteran
    Joined
    Feb 12, 2013
    My disabled child is my oldest. We have a DD20 and DS18 as well. When he was 8 our youngest told me his brother would live with HIM one day, he was going to buy a big farm with lots of land so that his brother could drive a golf cart all he wants around the property. 10 years later if you ask him, now at 18 and a freshman in college, yes he will tell you that is still HIS plan. They have a brother plan. My husband and I are not involved at all in this plan. :rotfl2: We have no clue when it will start, when he will take over, or even IF.. but they have their life laid out and it makes my heart swell every time they talk about it.
    That is SO sweet! You must be so proud of your son. What a great person he is!

    We have a loose plan for our sons to co habitate as adults in their own "independent" living situation. They have shared a room their entire lives and funnily, they have opposing strengths/weaknesses/skill sets. Together, they'd be a pretty well rounded individual! We figure they can each help the other out and divide the household tasks by their abilities. They like this idea, and we hope to help them make it happen one day. As long as they have each other, I think they will both be okay.
     

    LovesTimone

    Christmas Day 2017
    Joined
    Apr 29, 2009
    I'd say one reason is the example below:



    Just from your little snippet I understand the frustration. This sentence alone:



    tells me they never bothered to let the other children be part of the decision making and assumed they would just go along with whatever their parents' plan was.

    I agree, I spoke to her yesterday, and she and her DH are going to start touring some live in schools, is what they are calling it... She was rehashing the whole thing and I said maybe you should step back, take a breather, and look at it from all sides, it might give you a different outlook or perspective. She said why? I was like well it was just a suggestion... As far as a friend she is fun to be around, and I do enjoy her company... I just listen and stay out of it, as its not my place, nor do I understand what it's like to have a child with Autism.
     

    AgentMama

    DIS Veteran
    Joined
    Apr 5, 2016
    I agree, I spoke to her yesterday, and she and her DH are going to start touring some live in schools, is what they are calling it... She was rehashing the whole thing and I said maybe you should step back, take a breather, and look at it from all sides, it might give you a different outlook or perspective. She said why? I was like well it was just a suggestion... As far as a friend she is fun to be around, and I do enjoy her company... I just listen and stay out of it, as its not my place, nor do I understand what it's like to have a child with Autism.
    This isn't an issue of having the capacity to understand what it's like to have a child with a disability, it's your friend's issue of not being able to see how the situation might impact people other than herself differently and being able to see their point of view. You're clearly more perceptive than she is as you recognized immediately that while you're capable of seeing all sides, she's only capable of seeing her own.
     


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