Family Drama... This story is a bit long.. sorry.

Oh my gosh, this has the potential for disaster. It’s no wonder this girl acts out, when she has 2 “mothers” coddling her and encouraging her poor behavior. To be perfectly honest, if this was me, I would tell them to have that sitter they want to bring to your wedding watch that girl at home! Lord only knows what kind of scene she may cause during your ceremony!
If you still want her to attend though, I would let them know that, if they insist on bringing her to the wedding, they are 100% responsible for watching her and keeping her under control. They are also responsible for removing her immediately if she acts out in any way. Does she have to stay for the reception also? Or would her leaving after the ceremony (ie, her mother taking her home and leaving her with a sitter) be a possibility? Then you do not have to worry about any outbursts, or her mother not watching/controlling her properly.

Oh man... that's a tough one! Have you ever had a conversation with the sister yourself? This may help? Explain to her the importance of this day. Maybe she can do a speech for the wedding? (make sure you look over the speech and approve it lol). Maybe that'll make her feel special?

Sorry you're in a tough spot - hang in there!

First, I just want to say sorry that you're having stress added on. My grandma's brother has Down Syndrome and she was his caretaker for years. We grew up around him and though he is now in a care home (my grandma is in her 70s and he is beginning to show signs of dementia, so it became a lot for her to handle) he is still invited and will be coming to our wedding. Just mentioning this because I want you to know I have some background in this.

Is there a chance that your emotions and stress could be making you believe that she's doing this all on purpose? While she might be high functioning, if she can't live alone and needs a caretaker, then may actually not be able to completely understand these things in the way you say she does. For example, my great uncle did many of the things you're mentioning here and he wasn't high functioning to the point where he could fully acknowledge the consequences of his actions. He could do most things around the house and be just fine, but once told someone down the street that he was choking when he had a frog in his throat, ended up getting an ambulance called to take him to the ER, and it never once occurred to him what all of that meant because he tried to do the same thing like 2 weeks later.

I think your main issue here shouldn't be with the girl herself, but instead with the adults who are enabling her behavior and not doing their part as her caretakers in setting those boundaries with her. While she may not understand everything, they still can and should be setting boundaries. What makes you say that you believe she will cause a scene? Has she done this before at other gatherings? If so, could you have her come to only the reception so there is less of a chance that she has an outburst?

I really feel for you, but I feel like so much of this is an overall misunderstanding that is just hurting everyone in the process. If you uninvite her completely that will ruin your relationship with them probably for the rest of your lives. It may be time for your FH to sit down and have a serious talk with his mom and godmother about expectations and not to take no for an answer.

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My FH and I were discussing it, we've come to the idea that yes they can have a sitter for her but we are the ones who get to agree on who it is. I don't need two problem children at this wedding. Lol; She does well with her 'teacher' at school so I have reached out to ask her if she would consider helping us out for the night. She has helped with other students in the past at other events. This way she can remove her if there are any problems or outbursts, even take her home if it comes to it. His 'sister' tends to be more behaved if she is around her teacher so I'm hoping this will help. Literally all of my wedding anxiety is because of her running amok.

So...wow! I do think she should be present as a guest, but that it would be beneficial for "godmother" to hire a "sitter" for the day in case she is triggered by something and needs to be removed temporarily or permanently. The sitter should be someone experienced with special needs. I also think maybe if she had a special role that she felt was important, even if it's trivial, it would keep her focused on that (such as putting boutennaire on her "brother", handing out programs to guests, "managing" guest book).

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Thank you.

Yes- I've talked to her about it several times but she is not grasping it. She is more concerned about what she gets to do or be a part of. It's "all about her"... I've thought about giving her a prayer to read but veto'd it because she would have a mic and I don't want to give her the opportunity to say or do something else in front of everyone...

View Quoted Comment Having the teacher assist sounds like a fantastic idea! I am keeping my fingers crossed for you guys!

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Thank you. Yeah I've thought about handing out programs too, maybe it would keep her busy and she would think it's important enough...

Oh wow! Sounds like eloping is the best idea. Short of that, let them know via fiancé that parents will keep a close eye on this girl or security will have to step in. Also set and maintain boundaries with everyone, with consequences.

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I appreciate your input. I myself work with children and adults with mental and physical inabilities. We have other family members with physical and mental disabilities.

I am not concerned about the outbursts or small scenes that their inabilities cause. That is life, life is not perfect, it is messy and sometimes you just gotta laugh it off. My concerns are solely because I know his sister. I know what she is capable of.

I hope you know I appreciate your background and understanding regarding my situation. I understand that even as a high functioning person with DS that she may not fully understand what is expected of her. My frustration isn't solely on her, it is mainly on her caretakers as you've stated- they are not giving her boundaries and are enabling her bad behavior. Her 'outbursts' and 'scenes' are the equivalent of that of a regular teen who is jealous or wanting attention. For example: Whenever we are having prayer she interrupts to complain that she wants to speak and then proceeds to ask God to punish me and my FH for being 'mean' to her.

We all attended another family members wedding several weeks ago and we explained to her that its an unplugged ceremony and what that means. She smiled and explained it back to us assuring us she knew what that means. However she got up during the processional and started taking photos and video taping. -- I fully understand that this example is on the caregivers for not holding onto her phone during the ceremony or instructing her to sit down and be respectful during the ceremony but this is a concern of mine as well.

I can assure you after being with this family for 10 years, watching her grow (she is now 22, and she was 12 when I came into his life as a couple but I've known his family since she was 8), and having gone to multiple events with her that I know what she is capable of understanding and not understanding. I am doing my best to not allow my anxiety cloud my judgement and this by no means means I am uninviting her to the wedding.

There was never a moment where I considered uninviting them to our wedding. She and her mother are very important in my FH life and therefore important in mine. I would not be marrying into this family if I didn't care for the both of them.

I am sorry to hear about your grandmother's brother, I wish him happiness and comfort in the facility he is in, and peace for your grandmother.

I'm just frustrated by the whole situation and anxious for what could/will happen at our wedding.

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Unfortunately we are too late for an elopement if I don't want to eat the budget we already spent. Lol Thank you. I appreciate it.

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Thank you! Yeah we are hoping so too!

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I totally understand your frustration! And I definitely didn't want to diminish your feelings or your knowledge, but without knowing those things first I was concerned that your feelings may have been misguided. It's definitely difficult when there's not much you can do at this point regarding her behavior with his mom and godmother because they really could've helped her by not enabling her and they dropped the ball there.

I truly wish you guys the best for your day! I like what others have mentioned as far as having her take care of a small task during the day so she can keep her mind on that. Possibly helping your Fh with like cuff links or something small may also make her feel like she got to have a special moment with him - if you don't think that's something she would run with and want to keep doing more.

View Quoted Comment Oh no I 100% appreciate your input. I didn't think you were diminishing anything, I know you can't fully understand a situation you're not in. I'm sure you can appreciate it more than someone who doesn't have background in this type of situation. Thankyou for your help and concern. Like you said, there's not much we can do since her caregivers didn't help her from the beginning. I'm gonna take everyone's advice and try my best. I just don't think the anxiety will go away until after the day has passed. Ya know?

Honestly I think you need to have a conversation with FH. He needs to lay down the law with his mom and godmom, because that's where the real problem lies, not with sister.

If they're unable/unwilling to commit to keeping his sister from causing a scene, then they need to understand that there will be consequences. They may not happen on the wedding day, but they'll come later.

You will both develop resentments for mom and godmom if they can't keep sister from interrupting the wedding, and they need to understand that it will be no one's fault but their own when you guys distance yourselves.

Thus, FH needs to really stress and drive home that he expects them to be adults and keep watch on her until the ceremony is over. After that point whatever sitter they end up with can keep watch over her during the reception. At some point someone has to hold these women accountable.

While his sister probably seems high-functioning based on various tasks she is able to do, she likely still has significant delays with critical thinking and social-emotional skills and acts well-below her chronological age. While your MIL and FH’s godmother probably mean well, they are not helping by enabling her all the time. I think having her teacher be with her (assuming teacher agrees) is an excellent idea. Students do behave differently for teachers because they have different rules and expectations. I don’t think it would hurt, however, to think of something special for the sister for the wedding day. Can she get her hair done (even at a different salon than you!)? Pass out programs? Have a special glass made for her similar to your wedding ones that you give to her after your wedding? It can be something very minor that would likely mean the world to her!

I should add that I’m writing this as a both a bride and special education teacher!

View Quoted Comment Absolutely! He has spoken with them in the past but you're right maybe he needs to sit down with them again and let our concerns and expectations be known.

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Yeah, I definitely get that! There's so much to be worried about with weddings anyway that any extra stressors just put anxiety into overdrive. If you can without there being a big fuss, can you make sure that at the very least she's not allowed in your getting ready space? That way you'd be able to get ready and be able to push that to the back of your mind for a few hours before your ceremony? Good luck! Try to hang in there for the next few months.

View Quoted Comment Yes, I agree that having the teacher we will see a significant impact rather than trusting her mom and my FH mom to handle the situation. We had a glass made for her. I'm sorry if I didn't include that in my original post and already told her about it but it seems like no matter how much we try to make her feel special it's never enough. And her caregivers only enable this behavior. She along with her mom and my FH mom will be getting their hair, and makeup done along side myself, bridal party and my mom. So thats already taken care of but like I said before they aren't satisfied. They want her to be in the spotlight and it only enables her bad behavior... I appreciate your POV as a bride and a special needs educator. I mentioned in a reply post that I myself am involved with children and adults of physical and mental disabilities.