(Closed) Cousins with disabilities

posted 9 years ago in Etiquette
Post # 17
Member
442 posts
Helper bee

Safety first, feelings second. I would make a point of talking with the parents directly in person and letting them know your concerns are primarily for the safety of your many “fragile” and potentially unknowing guests who you wouldn’t want caught by a surprise tackle (put that more tactfully, of course). Mention the potential liability issues also.

Lastly, you NEED to do this – not only for the safety of your guests – but because if you don’t, you will spend your wedding day anxiously awaiting an outburst or incident, and that is NOT any more fair to you & your FH. 

I am amazed though that there isn’t any sort of medication the cousin could take to help ward off an episode … Xanax, etc. I don’t mean to equate her to a pet, but even my cat can get anxiety medication for road trips and things. Is that not an option for some reason?

Post # 18
Member
19 posts
Newbee
  • Wedding: August 2013

Talk to your aunt and uncle. Take them to coffee and sit and tell them your legitimate concerens. People with family who are “different” are usually used to being stared at and I’m sure they will appreciate your openess and honesty. 

Both of my younder adult brothers have autisim and my Fiance and I love them both very much, but my youngest brother has terrible anxiety. We were able to pick a venue where if he’s too upset there is a quiet place he can go to calm down. Does your venue have a place like that? If so, then you can give your aunt and uncle the option and say “Hey if things get out of hand, this is an option”.

 

Good luck!

Post # 19
Member
147 posts
Blushing bee
  • Wedding: November 2014

@LadyElva:  Totally agree here.  Talk to your aunt/uncle, and tell them that “since she is your family you would like her to be at the wedding, however given her track record of violence, you need to be concerned for all your other guests too (pregnant ladies, frail grandparents, even healthy adults!)”.  Be assertive when you say this! You don’t want to straight out exclude her, but you want to minimize the risk. But it is also the aunt/uncle’s responsibility to control their children, as much as if the child was a toddler.  Thus you want to know their plan for guaranteeing the safety of your other guests. 

A few strategies/compromises might be:

– have her attend only a short time of the wedding, say ceremony only?

– have her sit on a table at the edge of the room and a person to be with her at all times

– have her take on a designated task that she can focus on for the time that she is there, somewhat involved in the day, depending on her interests/autism behaviour etc.  It might be playing with a set of disco lights during the dancing part, or arranging some flower display, or drawing a gift picture for you.  Depending on her personality of course

If these compromises fail, or if the parents fail to recognize that she is actually a danger (I think they don’t see that if they keep trying to get her into programs and she keeps getting rejected) then you’ll have to take an assertive line of that you just can’t risk the safety of all your other guests for her, and can celebrate later with some wedding activity with her (opening presents?). 

Ultimately you need to get the aunt/uncle to make the decision to empower them.  So far everyone has been making decisions for them, and that’s what they’re mad about. 

Post # 20
Member
147 posts
Blushing bee
  • Wedding: November 2014

I forgot to add that maybe if she gets upset because of the situation anxiety, perhaps showing her the location before hand will help? And maybe having her involved only where there are people she knows eg. getting ready before, would help as a compromises?

Post # 21
Member
158 posts
Blushing bee

I can’t immagine being in the situation you are in, but I do agree with you and others that safty of everyone should come first. 

Really all you can do is try to sit down with them. In person if possible, and expain yourself clearly and hope for the best. 

Post # 22
Member
2168 posts
Buzzing bee
  • Wedding: August 2012

@ChellaBella:  Ok, I can relate to a few things here. First I have a cousin who has Tourette Syndrome and makes loud vocal tics and noticeable physical tics, and I wondered how he would handle my wedding. Second I have worked with children with Autism for over 10 years. Third, right now I’m pregnant. So your question really hit home for me – and I think you have every reason to be anxious about this.

Sorry I haven’t read all the answers, I invited my cousin and HE chose not to come due to being anxious – but your cousin will not be able to make that same choice. You don’t mention if she is verbal or has Aspergers – which would be a little different – it sounds like she has Autism in which case your wedding really won’t mean anything to her. She will likely not understand and certainly not be able to comply with sitting and watching and waiting. That’s an unrealistic expectation, that she probably couldn’t meet on her best day.

I noticed your response to PP to ask “What is the plan?” and I think that is first and foremost an excellent approach. And if they ask what you mean, there are 2 things:

1. What is the plan for the girls to keep them busy and entertained – your cousin will absolutely need something to do: a fidgit toy to hold, someone to walk the grounds with her during the ceremony when she gets bored, being first in line for things like food – I guarantee she will not wait well seeing everyne else get served first. Children with autism typically don’t wait well.

and 2. What is the plan IF (and likely when) she has a meltdown. Who is in charge of handling that/ There needs to be someone very clearly designated. Can they hire a worker to be there just in case if the family doesn’t want that responsibility?

Being pregnant, you have every reason to be concerned about the pregnant ladies, as well as your other guests. I am very familiar with autistic outburts like you described from your shower, and this is NOT something that can be overlooked. It is ok to be straight with your family about that concern – that isn’t being disrespectful, it’s showing that you understand and want to consider her needs and the likely outcome. I’m sure the family is WELL aware of her needs. Even if they want to be in denial.

Your cousin needs to have a 1:1 person with her if she comes, period. Who will it be? Let it be their decision.

I hope it works out. 

Post # 23
Member
47 posts
Newbee
  • Wedding: May 2014

I have a cousin who is severly autistic, I’ll call him A for privacy.  He has always had trouble at family events but in the last few years he has become increasingly violent and easily upset.  I really would like him to be at my wedding as he has always lived close by and as the older cousin, I have tried to interact with him instead of ostracizing him as much of my extended family has done.

What is the most important is to talk to the parents.  They know their children best and can give you a good idea about what would be best to handle the situation.  Your cousins are of adult age and, while unpredictable, their parents have raised them long enough to know what to do.  For A, passing by the cake and not being able to eat it has always set him off, as does loud noises.  So keeping him away from the cake table and the DJ are things his parents have always done to keep him calm and happy.  He loves puzzles, so they bring one for him to do with and the bride and groom have always found a corner and table just for him.

For my wedding, it is currently the plan for A to come to the ceremony and he may leave early with my aunt so my uncle and A’s sister (my cousin) could stay longer.  But my aunt and uncle are concerned that as he gets bigger (he is approaching 6 feet tall and it is harder to restrain him if he has a full meltdown), it may be best for him not to attend.  But I am not requiring this, but it is a conversation worth having.

Post # 25
Member
450 posts
Helper bee
  • Wedding: September 2012

@ChellaBella:  I hate to sound mean but I do not think you should invite her. I had a family friend very similar to this growing up. She lived with us for a year. I never knew what would set her off or how she would hurt herself or those around her. She was in a wheelchair and so dependent on those around her for care. But she was so violent. It was awful! She has since been institutionalized. But I cannot imagine her behavior at a wedding.

You have every right to enjoy your wedding without worrying about the damage that her violent outbursts will cause.

 

Post # 26
Member
2168 posts
Buzzing bee
  • Wedding: August 2012

@ChellaBella:  so that was a bit more information, and I definitely say then that you will unfortunately have to take on the tough love role and suggest they find care for her that day, so that they can attend and know she is being cared for and is ok. Im sure her parents are tired of missing out on stuff, so finding a respite program or worker is key. Maybe to soften the blow you could offer to pay for the care that day??? It’s very expensive to have a child with special needs, and to attend a wedding.

I also agree with you that there is far too much ignorance placed on inclusion. The fact is that experiences have to be meaningful for BOTH sides – you can’t just throw someone with autism into a social situation because they have a right, when it could be setting them up to fail and not meaningful for them anyway. That’s basically the same as dumping someone in a foreign country without a guide book because they have a right. It doesn’t make sense. A lot of people dont understand that though. It would be a far better day for all if she could have a worker take her swimming (or something she likes) or something during the wedding.

Good luck!

 

Post # 27
Member
442 posts
Helper bee

Not to go way off track here, and certainly not the OP’s concern right now, but how can they NOT have help, support, etc for your cousin? What do they expect will happen upon their unfortunate passing? Do they have a plan for someone else to take in the cousins? They simply CANNOT stay in denial forever. Unfortunately, at times, institutionalization is the best option for all – safety & security for the patient and peace of mind for the family who can visit their loved one in a controlled environment. 

Post # 28
Member
91 posts
Worker bee
  • Wedding: August 2013

@ChellaBella:  My heart goes out to you and your decision. My initial and continued thought is how callous of your aunt and uncle to force your hand at something that clearly isn’t in anyone’s best interest. It’s not in your cousin’s best interest to be forced at an event she wouldn’t enjoy and then could be everything distracting and even violent. It is upsetting that your aunt and uncle don’t care enough about you that they would gracefully take care of the situation without trying to make you feel bad. I hope you don’t feel bad for your decision, they don’t feel bad for creating it.

Post # 29
Member
20 posts
Newbee

For many families with kids with severe disabilities it is extremely painful to see their children excluded by friends and family, and to have the people close to them appear not to value or understand their kids.  I think however this ends, you should start the conversation by expressing your love for both girls as your cousins, and your desire to include them in your family celebration in a way which is meaningful to them.  THEN you can say that after what happened about your bridal shower you have some concerns about safety and disruoption, and lay out the situation of frail and pregnant people etc.  Then, tell them that you want to know what YOU and your fiance can do to make a plan for their family’s involvement/attendance at the wedding that will be safe and supportive and provide everyone to participate to the extent they’d like to.  You might offer:

-that you will be happy to extend an invitation for a 1:1 aide (perhaps even one for each girl, so parents can enjoy the party) and if finances are a concern, to help them pay for this

-that you will arrange for a quiet space at both the ceremony/reception site where the autistic daughter can be taken to calm down if needed

-that you want to work with them to understand anything that is tough for their daughters (heat? long waits? loud noises? flashing lights?) so it can be minimized or so they can be warned in advance about anything that might trigger a problem

I wouldn’t make a big deal about the girls’ vocalizing, but once you have an overall plan in place you could mention that if their vocalizing significantly disrupts the ceremony you’d appreciate if an aide could escort them out of the room.

This is a family that’s obviously been hurt in the past (eg when your aunt didn’t invite the girls to her wedding) and it would be a very considerate gesture to start the conversation from a place of caring and wanting to accommodate, rather than out of hand rejection.  It will mean a lot to the parents, and probably to the girls too — they may not be verbal, but they probably understand more than you think about who cares about them and wants to include them.  If the parents know you are coming from a place of love, it may make them feel less defensive and allow them to consider realistically that full participation for both girls may not be appropriate — eg maybe the younger girl needs to go home after the ceremony.  They should be able to figure that out for themselves though — and should be allowed to, with your support.

Good luck!

Post # 30
Member
469 posts
Helper bee

I have a close family friend who has moderate autism, damage to the brain that has stunted his development (like your cousin, doesn’t speak, wails) and is also severely bipolar, which causes him to become violent. He has actually been deemed one of the 10 worst cases in Ontario by CAMH. We do plan on extending an invitation with a plus one for a worker from his group home, however, we leave the decision completely in the hands of his parents if they think its a good idea, and we’ll understand if they say no on the day of because he’s having an episodic day. We also plan on giving him family a table by an exit in case theres an issue (also, his mother has bad knee issues and needs a walker). I guess it depends on how logical your cousins’ parents are about the situation.

Post # 31
Member
7 posts
Newbee

I don’t know if this is even possible but I just wanted to throw it out there. Is it possible for your cousins to watch a live video of the wedding ceremony from another location close by with a caretaker? A location where they could watch the video or chose to play with toys and “safely” have a tantrum?  So the parents could feel like their children had the “option” to watch the ceremony without distrupting?

From a parent perspective, I know my parents were always grateful when the text of a play, wedding, church service, etc was provided for me (I am hard of hearing). It allowed my parents to relax and not have to interpret. Very different situations, but I wonder if the parents could use a break and would agree to the idea of their children being close with “access” to the ceremony through video? People could visit with the cousins as they felt inclined. It would depend on the personality of the parents I suppose. 

Good luck OP! Hard situation!

 

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