Bride Excludes Severely Autistic Sister from Wedding

tcufrog

DIS Veteran
Joined
Jul 18, 2012
DS14 has a high IQ coupled with high functioning autism and ADHD. Parenting him over the years has been so difficult at times that we did consider at some point whether he needed some time in an in patient program.

Despite all of the difficulties, we have really tried to make DS10 feel loved and important to us. It’s really hard sometimes but we believe that it’s really important. We also don’t excuse any bad behavior that DS14 has towards his brother or us.

We also believe that we need as parents to do what we can to teach DS14 to live in the world as it is instead of expecting the world to bend to his will. We’re fortunate that he’s so intelligent and high functioning but it’s still quite difficult and exhausting.
 

BroadwayHermione5

DIS Veteran
Joined
Feb 9, 2017
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.
Ask and not just dictate can also cause issues. A former friend of mine (no bad blood just lost tough), was told by her parents that her sister would be out in her care should something happen as she was the oldest and it wouldn’t be fair to anyone else, including her younger brother. I remember telling her to sit down with them nicely and ask if that could be changed to you and your brother when he is old enough because heaven forfend something happen to your future spouse or children-you can’t be taking care of them and then your sister comes in and it causes, for lack of better words, chaos. Last I heard, she actually had spoken to them, and they started seeking options for when her sister will need care. No word on the brother yet being added to the instructions of the will or if she was fully taken off, but she finally got through to them that it is in fact not fair, and they need to be prepared.
To end on a positive note to this story: Her sister is doing excellent! I see them often post on social media about their accomplishments, and her sister graduated high school pre pandemic and is doing well! She has a part time job at a store and pre pandemic was volunteering at the local library. While she will always need help, her sister is doing really well now socially than she was prior, and I am proud to know her and see how much she has grown.
 

barkley

DIS Veteran<br><font color=orange>If I ever have a
Joined
Apr 6, 2004
Ask and not just dictate can also cause issues. A former friend of mine (no bad blood just lost tough), was told by her parents that her sister would be out in her care should something happen as she was the oldest and it wouldn’t be fair to anyone else, including her younger brother. I remember telling her to sit down with them nicely and ask if that could be changed to you and your brother when he is old enough because heaven forfend something happen to your future spouse or children-you can’t be taking care of them and then your sister comes in and it causes, for lack of better words, chaos. Last I heard, she actually had spoken to them, and they started seeking options for when her sister will need care. No word on the brother yet being added to the instructions of the will or if she was fully taken off, but she finally got through to them that it is in fact not fair, and they need to be prepared.
To end on a positive note to this story: Her sister is doing excellent! I see them often post on social media about their accomplishments, and her sister graduated high school pre pandemic and is doing well! She has a part time job at a store and pre pandemic was volunteering at the local library. While she will always need help, her sister is doing really well now socially than she was prior, and I am proud to know her and see how much she has grown.

all emotional issues aside with your friend's situation-it frightens me when i hear of parents of disabled children who will likely require some form of lifelong assistance just assuming they can arbitrarily name someone in their will to assume care of their child. it's one thing with a minor child but once someone hits their state's age of majority it a whole different ballgame and guardianship isn't something that a parent of an adult child can just hand off like grandma's china in their will. the steps we had to take to become legal guardians of our son (who was capable of indicating he was in support of it) was no easy task and it's only because our older child was/continues to be willing to be designated a 'back up guardian' that if something happened to myself and dh there would not be months upon months of ds being placed under the guardianship of the state while dd (if she desired) went through the guardianship appointment processes which with the 'free britney' movement is becoming in some states a much more time consuming, costly and cumbersome ordeal (my state already has an extensive vetting process with tremendous reporting and oversight).

i would highly recommend that any sibling or family member of a disabled individual for whom they could potentially become the primary caretaker (even 'personal assistant' for healthcare/banking/legal transactions...) to learn AHEAD OF TIME what their legal status would be immediately upon the disability or death of the disabled person's current parent/caregiver (do not believe that a power of attorney is all it takes-if someone is truly at the criteria of requiring guardianship then they are legally incapable of signing a power of attorney and while i've encountered some parents/family members who will use them-i.m.h.o. it's morally reprehensible).
 

BroadwayHermione5

DIS Veteran
Joined
Feb 9, 2017
all emotional issues aside with your friend's situation-it frightens me when i hear of parents of disabled children who will likely require some form of lifelong assistance just assuming they can arbitrarily name someone in their will to assume care of their child. it's one thing with a minor child but once someone hits their state's age of majority it a whole different ballgame and guardianship isn't something that a parent of an adult child can just hand off like grandma's china in their will. the steps we had to take to become legal guardians of our son (who was capable of indicating he was in support of it) was no easy task and it's only because our older child was/continues to be willing to be designated a 'back up guardian' that if something happened to myself and dh there would not be months upon months of ds being placed under the guardianship of the state while dd (if she desired) went through the guardianship appointment processes which with the 'free britney' movement is becoming in some states a much more time consuming, costly and cumbersome ordeal (my state already has an extensive vetting process with tremendous reporting and oversight).

i would highly recommend that any sibling or family member of a disabled individual for whom they could potentially become the primary caretaker (even 'personal assistant' for healthcare/banking/legal transactions...) to learn AHEAD OF TIME what their legal status would be immediately upon the disability or death of the disabled person's current parent/caregiver (do not believe that a power of attorney is all it takes-if someone is truly at the criteria of requiring guardianship then they are legally incapable of signing a power of attorney and while i've encountered some parents/family members who will use them-i.m.h.o. it's morally reprehensible).
Absolutely 100% agreed. I don’t think it crossed my friends path until she mentioned it to me and I was like “wait what?”
On the flip side, I thankfully know a few couples who have children with special needs who have crossed every t and dotted every I in preparation for when they are no longer here. Much like you, it breaks my heart when something like what happened to this bride happens.
 


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