(Closed) Friend’s autistic child – what to do?

posted 10 years ago in Etiquette
Post # 46
Member
374 posts
Helper bee

your friend wants to come badly enough to bring her child.  She probably can’t find a sitter and that’s why she wants to bring the child.  All things being equal, she probably would rather not.

You should tell her that both sides of the family have talked about inviting children and it was decided not to because it would expand the invitation list and to be fair to your families you have deicded across the board, no children except the ones in the wedding party.

State that you know what a good friend she is and that she will understand. 

She probably won’t because she expects you to make an exception; but you can’t this time.  Well, you can, BUT you shouldn’t.  Go ahead and send the invitaiton, Mr. and Mrs. Jack Friend. 

 

Post # 47
Member
150 posts
Blushing bee
  • Wedding: June 2012

This is going to sound so awful but I personally don’t think that a wedding is an appropriate place for a child prone to tantrums. ANY child. I don’t care how much so and so loves his child, if I know that this child is prone to freaking out for whatever reason and continually causes problems (the OP said that they have had to leave restaurants etc) I wouldn’t want them at my wedding, period. I know that I sound like a bitch here but let’s face it, no one wants to hear a child screaming during the ceremony or the reception. Bringing her daughter isn’t a good idea… especially if she knows that her child is going to act out based on her issues. I am surprised that the mom is insistant on bringing her in the first place.

Post # 48
Member
7 posts
Newbee
  • Wedding: November 2011

I think I’m seeing this too late (discussions over possibly?), but as a mommy of a little boy on the spectrum, it’s hard to deal with these kind of situations. She probably doesn’t feel she has a very reliable babysitter, or maybe she is struggling to see how this could stress out J. I do have to say that I would rather my son have a fit then not be there for our wedding, but this is OUR wedding, not a friend’s. I do have someone else (normally my parents but definitely someon trained and familiar with him) babysit for other ppl’s wedding.

Maybe you can meet her up for lunch or something and explain this to her. If my son was rejected from being a guest at a wedding because of his disabilities, I would be very offended. While I understand his needs and accept them, it doesn’t make dealing with how others view him easier.  I’d be sure to include things like noise, amount of people, etc specific for your day. I know that if I had a friend go out of their way to find a solution with me rather than just telling me no because of his ASD, I would definitely respect our relationship more.

Overall, she should know what J can handle and what she couldn’t. Does she often ignore J’s needs to do things that aren’t necessary? I know a trip to the grocery store is stressful for our family, but we must eat. However, I am not going to just take him some other places for my own enjoyment. If you think she really is in tune with the situations J responds pos/neg to, I’d really try to make sure you don’t walk too far on her toes. Or if she is trying really hard with J to fit in/be accepted better, it’s more of a sensitive subject. It’s so hard, and so stressful for everyone invovled. Just be sure to be extra compasionate so you don’t ruin a friendship in order to have your day be flawless. ((I totally agree with you, I just know how I feel when we’re not invited to bday parties and what not because of his ASD. I understand it but it’s still really hard to look at our friendship in the same light…))

Post # 49
Member
13 posts
Newbee
  • Wedding: October 2013

@Edenrayne: My fiance has 2 autistic nephews, the hazard is of course that hiring someone who is capable of handling a child with autism is on the expensive end and can be nerve-racking. We are having a kid free wedding we also included the cost of his sister’s children a wedding expense.

Post # 50
Member
1 posts
Wannabee
  • Wedding: May 2012

I don’t know if you’re still reading this board, but in case anyone else is googling this issue, I’d love for them to read my feelings on the matter:

FROM A MOMMY OF  A CHILD WITH ASD, AND A CHILD DEVELOPMENT MAJOR, AND AN INDIVIDUAL DEDICATED TO HELPING OTHERS UNDERSTAND ASD RATHER THAN DESCRIMINATE AGAINST ASD INDIVIDUALS OR THEIR FAMILIES:

*First I want to say that YOU HAVE NO IDEA how big of a deal this really is for your friend if you disclude her from your event or make her child feel unwelcomed because of her condition.*

I have a beautiful boy on the spectrum who good or bad is MY WORLD.  Life is tough enough for him to make and keep his own friends. So it is for me as well, as we have to pick and choose the events that my son goes to, ala sensory disorders and eating issues, driving wedges between friends us and friends who don’t understand our life (by our I mean me, my fiance, and my son).  I know that this is tough on others who DON’T have to deal with this, to sometimes have to adapt to MY child, but that’s how I know who my TRUE friends are.  My son is my flesh and BLOOD and my joy, even if he just looks like a behavorial mess to OUTSIDERS.  And if any CLOSE FRIEND of mine do not accept him, then they aren’t accepting ME.  PERIOD. 

INSIGHT FROM A PARENT OF A SPECIAL NEEDS CHILD:

1.  Hiring a “babysitter” is almost non-existent for children on the spectrum who are non-verbal for two very big reasons 1.  The child can be remarkably hard to deal with even for the parents, let alone anyone who is not intimately involved in understanding the child’s behaviors, needs, and outbursts.  This becomes a SAFETY ISSUE for the child as well as A SERIOUS ANXIETY AND INABILITY TO ENJOY ANY PERIOD OF TIME AWAY for the parent who leaves their child with someone else. 

2.  So therefore, leading to number 2, there are few if any instances that the individual will utilize a trusted individual, and those moments usually constitute emergencies so that we don’t overuse these precious resources; quite often a wedding just isn’t emergency enough for us to feel the need to make this drastic move. 

3.  Altering the child’s routine (leaving the child at HOME away from the comfort of a parent) has MASSIVE, DRAMATIC results you couldn’t even begin to understand if you tried.  The child’s moods change, their routine changes, their sleep changes, their eating habits change, and often times they show regressions that cause deep stress within the household.   One night could cause weeks and weeks of disturbances.  I bet you weren’t aware of this, were you?

Children on the spectrum have a hard time at big events.  But they also have a hard time feeling like they are not wanted and being separated from their parents.  And believe you me, we are learning fast through research that non-verbal doesn’t necessarily equate with unaware or unable to feel and understand some very essential things. 

     Do you know how I know who my true friends are?  They are the ones who accept me for good and bad, better or worse.  They recognize that whether I’d like it this way or not, that I (as it becomes for parents of special needs children) am no longer just ME.  I am a PACKAGE DEAL.  If you want to be with me, you gotta be okay with my boy.  He’s a great kid, really, but if your child is NT (that means neurotypical because NO ONE has the right to define NORMAL) you may not see how great my kid is because what is great about my kid isn’t always the same things you’d pick out as your child’s best assets.  But he has his moments and I have learned to pick MY battles with him.  He has gastro issues, food allergies and limitations, Sensory disturbances….to name a FEW.  So let me let you in on this insight:  I have to PICK AND CHOOSE where I get to go because usually that will include my child.  IF I CHOOSE to attend something with you, it means I think you are worth a HELLUVA lot of hard work.  It means I’m giving up a lot of things to make this happen.  In the case of my family, I have to “give a little,” meaning I have to make my grocery trips shorter, my own errand running as painless as I possibly can, and limit any other places I go to BUY some “sensory relaxation” time for my son to go TO YOUR EVENT. 

Close friends of mine who have recognized the complex relationships that few recognize between special needs child and parent of said child have been able to focus on a few crucial things:
1.  That if I am going on an outing with you, that I have sacrificed to do this and that you are sacrificing some peace and perfection so that we can stay in one another’s life.

2.  That my child’s behavior is NOT misbehavior and any comparsion to NT children is unfair and hurtful and is comparing apples and oranges.  To translate:  your comment about other children that WILL be behaved is shortsighted and painful to me.  Friend’s also recognize my child and his or her own goods and bads for all that they are and ACCEPT THEM even if they can sometimes be embarrasing or frustrating.

3.  That with preparation, education, and understanding, that we CAN make outings fun and worthwhile.  Translation:  As a good friend, instead of driving a wedge between you and said friend (because in essence what you are doing is asking your friend to leave the child at home so it doesn’t EMBARRASS YOU OR UPSET YOUR PERFECTION, thus she has to choose YOU over her child and remind her of the trying and heartbreaking sides to parent a special needs child), try HELPING your friend and accommodating her child.  There are some remarkably easy accommodations that CAN be made to lessen the overload and interruptions.  By all means, GOOGLE autism A LOT, talk in depth with your friend, and tell your friend that you want to work WITH HER because her attendance is meaningful to you in celebrating your marriage and this new chapter of your life and that you want to make this as painless as possible for EVERYONE.  

Try offering things like allowing the child to bring a blanket, a mp3 player with her favorite calming music, a calming textural input object, or  a small kid pup tent so that the child can have a “safe place.”  It might require some extra effort or some time, but believe you me, you’ll grow and learn from the experience of stepping into the shoes of someone with ASD while learning about them and you will strengthen your friendship at the same time.  It’ll even lower your stress:  preparation means a little bit less worry.  And recognziing that the best wedding stories are usually the unscripted ones.

Because isn’t that what a wedding is about?  Inviting meaningful people who have contributed to your life in positive ways and who have helped make you the amazing person you are who is about to embark on the next chapter in your life?  Why else do we invite people if not to love them and accept them?  Certainly we aren’t all so shallow that we are inviting people to our wedding to SHOW OFF and that’s why we are so worried about perfection are we?  I’m an optimist so I’d like to think that we invite others to our weddings as a mututally joyful experience, not a “you-travel-x amount-of-miles-use-your-precious-PTO/days off-spend-money-on-clothinig-arrangements-accommodations-just-to-watch-bride-and-groom-show-off-and-then-shower-them-with-gifts…” to get nothing but a dog and pony show in return experience…..

It will mean more effort.  But believe you me, if your friend is choosing to go to your wedding and bring her child, then she will be working VERY HARD and putting in GREAT EFFORT to come to celebrate your joys with you. Meeting in the middle for things like this is the stuff that understanding friends are made of. 

Your friend did not ask for the obstacles and challenges of having a child with ASD.  But she has obviously accepted those challeges head on by taking that child to tough places and facing the wrath of others who whine about “imperfect outings.”  Be a friend and BE a support for her. 

You, too, will grow in the process more than you’d ever expect.

God Bless and good future to you.

Post # 51
Member
258 posts
Helper bee
  • Wedding: March 2012

I have an autistic 19 year old sister was also has siezures and I don’t feel offended by this post at all,its her wedding at the end of the day and her concerns are the same ones I have with my sister she hits people out of nowhere and screams and my mom was going to have her aid babysit her for that day but her aid can’t so my moms sitting at the end of the aisle incase my sister gets her fits or seizure. I also have an autistic 3 year old nephew and he also has ADHD and due to that my older sister isn’t takeing him.I don’t want to have him screaming and running around thru out the ceremony and she didn’t get offended either.My mom and older sister understand that there’s just situations were its hard to control an Autistic child and they understand,my sister gets entertained with boxes and stimulating her fingers on cardboard so were having a little bag with her favorite things so she dsnt scream or get frustrated during the ceremony.I don’t think the bride wrote this post to offend she was only speaking her concerns and that’s normal to feel that way.

Post # 52
Member
1309 posts
Bumble bee
  • Wedding: December 2011

Having an child with autism melt down in the middle of a ceremony is not the “unscripted wedding story” most people are thinking of when they say those are the best ones.

It also does not reflect a “show-off” or shallow attitude to desire a wedding that does not involve behavioral outbursts. Children with autism can’t control them, but they are disruptive behaviors and they could certainly spoil the occasion depending on how serious and how much time passed before the caregivers were able to remove the child. Perhaps nobody has the right to define normal and abnormal for neurological processing but the resulting behaviors are definitely abnormal and cause disruption.

I have a parent with serious behavioral problems as a result of mental illness and for this reason she is sometimes not included at certain events which we know will cause an outburst. This is for our comfort, but her comfort too. She is extremely miserable when she is having a fit and worse, even though she can’t control it, she is aware that her behavior is disruptive and is very embarrassed about it afterward. It really does her no favors to “force” her inclusion in events which we know will cause her stress and suffering. When we try to force it, it’s often just because we really, really want her there. In other words, it’s for ourselves, not for her. It’s not the best thing for her.

It’s very painful but we would just be kidding ourselves if we tried to compare her disability to the disability of someone in a wheelchair. What is discriminatory for one, is not for the other. They are both disabilities but they’re very different things. Someone with a physical disability can do a million things that my mom with her psychological disabilities will never be able to do. When it affects the brain, it is just a much more severe situation and it sucks but hopefully one day they can make it so nobody has to go through this again. I would never be offended by someone asking if I thought mom should come to their wedding. I would be pleased that they thought about mom and her special needs and if a wedding was a good situation for her. It’s very considerate to bring this up with the caregiver ahead of time instead of them having to bring it up with you.

Post # 54
Member
1081 posts
Bumble bee
  • Wedding: July 2013

I also teach children with autism, and I agree 100% with everything

View original reply
@izziebear has said!

I think the best idea would be for one of her aides who works with her at home or in the school to accompany her. As an aide, I have been asked by parents on more than one occasion to accompany the family to public events to help watch their son with autism (middle school jazz concerts, plays, etc). Teachers and aides have a deeper understanding than most parents in terms of positive reinforcement and handling behaviors (it’s what we’re trained in, after all!), so an aide may be able to provide the best support while also allowing the parents to relax and enjoy the wedding! Plus it could give you more peace of mind.

I am including two of my former students in my wedding party – neither is affected by loud noises and crowds, and their parents absolutely love the idea. I think the kids are going to have a blast, but it’s helpful that many of my coworkers (who are trained in ABA and autism education) will be there and can hopefully keep extra eyes so that the parents do not have any pressure or stress on them.

Post # 55
Member
1081 posts
Bumble bee
  • Wedding: July 2013

View original reply
@AprilC:  

 

I read every word you wrote, and came close to tears. I teach children with autism (almost all of my students are nonverbal, and many have severe behaviors including aggressions and SIB). I absolutely love every student I’ve ever had the pleasure of knowing, and each and every one of them has taught me something new about life and about myself.

I have so much respect for all my students’ parents, and all parents with a special needs child. The battles you (and any parent with a special needs child) face, and the difficult decisions you are forced to make every day deserve more respect and understanding.

The school I work at offers an after school program where we bring the children into the community (parks, malls, roller skating, farms, swimming, etc). It’s to help the students become more accustomed to different environments, and to help the public get more accustomed to children with autism. The only part of the program I dislike is the few ignorant people who think they have the right to say something to us.

It’s my hope that eventually “autism awareness” is not limited to puzzle piece magnets and thoughts of Rainman, savants, and aspergers, but becomes a more widespread knowledge of how people can be different and still be wonderful.

Post # 56
Member
1 posts
Wannabee

I have a child with special needs (3 years old and developmentally delayed) and she is in a wedding this evening.  It is scary for me.  The bride and I had a very frank and honest conversation about expectations and I think that no matter what the behavior that it will be ok with her.  However, it isn’t fine with me.  A sacred and solom occasion where a man and woman are pledging their lives to each other should not be inturrepted.  If you have a special needs child, or a 5-year-old that is likely to announce in a stage whisper that he has to go potty, then they should not be in the ceremony during the vows.  My daughter is the flower girl.  She will walk (or run or crawl–who knows) down the aisle and then I will scoop her up and leave the sancutary.  I hate that I will miss the vows, but I don’t have anyone to watch her in the playroom.  I would have been very grateful if the bride would have let me know in enough time to make arrangements that there was a room that could be used for this, but I was thinking that I would have to step outside with her so I didn’t arrange for a sitter.  After the ceremony, my daughter is welcome at the reception–no matter what.  The reception is a celebration, not a sacared ceremony.  When my sister was married she had a playroom with several sitters and asked that no children under the age of 10 be in the sancutary except the wedding party.  Kids were happy to go to the playroom–parents enjoyed the ceremony more–ceremony was not inturrepted.  In this case, it may be that a specially trained aid would be needed in a playroom to assist this child.  

 

Also I would like to say that the bride and mother of the groom helping me figure out how to best handle my little flower girl–even if we all agree that the ceremony is not the best place for her–made me feel loved and supported.  I know my kid has limitations.  I appreciate it when someone reaches out and wants to help me and my child be included.

Post # 57
Member
2104 posts
Buzzing bee
  • Wedding: September 2012

Hey guys the wedding in question happened 6 months ago. 

Post # 58
Member
847 posts
Busy bee
  • Wedding: December 2015

@Edenrayne:  Try to include the kids you do want into the wedding party. If you can’t do that, then maybe  say only the kids you’re close to are being invited?

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