Thursday, July 26, 2012

RSVPhobia: It's a thing.

This is not a sports blog. I feel I should explain that before I begin this next post. I may write about sports more in the future, but this is pretty much a Me Blog. Okay, I've explained... moving on.

As much as I appreciate the thought, your kid's birthday party scares the crap out of me. As a matter of fact, the invitation alone brings me feelings of sheer terror. I would love for every parent to just understand this, but maybe I should explain.

If you are the parent of a child with Autism/Aspergers you know exactly what I'm talking about. The mere mention of "party" sends a panic signal to your brain.

Sensory overload! Red-faced meltdowns!

"Oh God you have a laser tag themed birthday party?!?!?! For the love of sanity NOOOOOOO...."

Yeah all of that.

When my son goes to a party he sees everything at once. He doesn't just see ice cream, cake, presents, games and kids. He sees it ALL at once. He wants it all to happen right then and he wants to control it. He understands the idea behind buying a gift for the birthday boy/girl but he doesn't like it. He cannot stick to the hosts schedule it needs to happen NOW. All of it. NOW. There are children running around screaming and playing games and he can't focus. It's too much to take in. Therein sensory overload. Complete and total over-stimulation. Most kids can handle this just fine, but not my son.

Imagine you walk into a room and suddenly a stereo turns on. Not just any stereo but one of those Bose systems with 5 speakers and a bass unit. Now imagine every single one of those speakers was turned on to it's highest possible volume, bass turned up to 10 and everything is thumping. You can feel the music as you grit your teeth to bear the volume. Now imagine a pulsing light. One of those ones you see at a club. Flash, flash, flash. The music is pounding and reverberating through your whole body. The light is flashing in your eyes. How long do you think you could stand this? 5 minutes? 30? Okay, now imagine the room is locked. Do you feel uncomfortable yet?

That is exactly how my son feels when he's put into this type of unpredictable, unscheduled, anything can happen type of environment. It's chaotic and uncontrollable which makes it very uncomfortable for him. He just cannot handle it. As fun as it should be (and he knows it should be fun too) it's not. In his mind it escalates to a boiling point and when that happens it's best for us to escape. So we do. Anywhere we go we have a pre-planned escape mapped out. My husband and I say to ourselves before we go anywhere (zoo, racetrack, party etc.) "We need to be prepared to leave in case this goes south." And we do. My son's comfort level is more important to us than anything else and we constantly need to compromise our plans to fit his needs.

This is not a lesson he needs to learn either. This is not something he needs to get used to or adjust to. In the grand scheme of life, birthday parties aren't going to rank high on the list of important challenges accomplished. But it's important that my friends who are parents know that this is in fact just that for my son. A challenge. I don't feel the need to force him into this situation because it's uncomfortable and frustrating for him.

It has nothing to do with your child, you, your house, your party. It has nothing to do with you. Please remember this. It has nothing to do with you. I'm sure your party will be great, your child and his/her guests will have fun, but don't be upset if we only stay a short time. And if we just don't go, I need that to be understood too. Some days he may be able to handle it, others not so much.

One more example:

This weekend my Uncle is getting married. As soon as I received the invitation I had decided that myself and my daughter will go and we'd leave my husband and my son at home. There's just no way I can expect this boy to sit through a wedding ceremony and then try to handle a reception afterwards. He'd have to be dressed up first of all which is problem #1. You know how when your t-shirt has a tag it's kind of annoying? Well, he interprets that as pain. Real physical pain. So if he's dressed in an outfit that is anything other than his favorite clothes his comfort level drops. Problem #2 would have been asking him to sit still during a ceremony. Not happening. He's already uncomfortable in his clothes, asking him to sit still and be patient and quiet would have been too much. And of course, problem #3, the reception. It's a party with presents and cake and ....oh my God sensory overload would have already happened.

I hope this has made some sense. I felt it should be explained. I realize the inconvenience it brings to your event, but this is what we do. If you saw your child struggling you would help. You would alleviate whatever bothered him or her and you would be there for them. I would love to attend parties like "normal" parents, but that's just not the hand we were dealt. Parties shouldn't inspire fear, but they do for us.

I'd like to finish this up by saying that this is not just an autism-ism (great word thought up by a friend. Thanks B.D.)This is not something that is limited to children with behavioral or social issues. Somewhere there is a parent out there with a perfectly "normal" child who is just as scared of parties as I am. Not ALL autistic children feel this way. If you know me, you know I don't like calling my son autistic. I like calling him by his name. Every child, no matter what their diagnosis, is an individual and should be treated as such. So Mrs. Whatsherface up the street may have an autistic son who can handle parties, but my son can't. All I ask of my friends is to just please, please, please even if you don't understand what I've explained, don't take offense.

I promise it's not you, it's us.


  1. Very enlightning Marcia; Thanks for the clarification. I am sure parents of children that have this will appreciate the input. I really I had understood it more when I was a special needs bus driver. It would have been very helpful. Thanks again

  2. Extremely well written and informative. You really paint the picture so that I could understand the pain and discomfort these situations can cause. Teachers and all who deal with children (i.e. pretty much everyone) should read this! - DLD

  3. Hey..awesome girl..i have some friends i will share this with!!!
    Miss ya