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.