Jeopardy champ Ken Jennings made the following tweet yesterday: “Nothing sadder than a hot person in a wheelchair.” The Twitterverse almost immediately exploded. Some people laughed, most were outraged. Jennings has not yet responded to inquiries and comments about the tweet. Part of me wanted to resist giving this ableist nonsense any more exposure, nor give that person any more free press, but I just have to say: I’m sorry, Ken, but that is incorrect.
All parents want to protect their children. We are constantly on guard, looking for potential threats. Parenting a child with special needs often requires an extra measure of caution, because problems can hide in the most innocent of places. Where some parents see fun and merriment, we may only see danger, potential meltdowns, or sensory overload.
An experience we had many years ago on a family vacation comes to mind as an analogy. My husband and I took our two small sons to the beach and it was a lot more work than we expected, partly because our toddler and preschooler had distinctly different sensory needs at that stage. My oldest child spent most of his time avoiding the sand and crying “Dirty, dirty…” under his breath. My youngest, on the other hand, couldn’t get enough of the sand. He would sit and eat it by the handfuls.
After a while I was exhausted and decided it was time for “easy.” We headed to what I thought would be a safe haven: the baby pool at the beach club. After a few minutes of play I stepped on something squishy at the bottom of the pool. I picked it up, and to my horror realized I was holding a jellyfish. A JELLYFISH. In the BABY POOL! A man saw my reaction and said nonchalantly, “Oh yeah. my kid was playing with that. It doesn’t have any tentacles!” I was appalled. Why would anyone take a risk like that with the safety of small children? Not to mention the fact that a baby pool doesn’t need any extra organic material, if you know what I’m saying. Not wanting to take that man’s word for it that no one could get stung, I disposed of the jellyfish. It was a wake-up call to me that there was something potentially dangerous in an environment that should be protected.
As my children got older, and my youngest son was diagnosed with an Autism Spectrum Disorder, I realized that the world is full of “jellyfish in the baby pool,” so to speak. Other parents of children with special needs know what I am talking about. Experiences that may be perfectly safe or enjoyable for typical children can be dangerous or overwhelming for a child who is physically or neurologically different.
Dinner out as a family? Lots of ways you could get stung by jellyfish. Taking your kids with you grocery shopping? Jellyfish. Public school? Jellyfish. Amusement parks? Jellyfish. Trick or Treating? Jellyfish. Dentist appointments? Jellyfish. Enjoying the latest Disney movie at the theater? Jellyfish. Haircuts? Jellyfish. Playing outside with other children? Jellyfish. Easter egg hunts? Have mercy. (If your child can get through the waiting for the start of the hunt then you sure as heck better have some emergency eggs stashed in your pockets just in case the hunt itself doesn’t go well.) Chuck E. Cheese? Actually, never mind that last one. I’m pretty sure all parents feel the same way about that place.
Check that one off the bucket list~ I finally attended my very 1st comic con! For some reason Wizard World decided to come to my little ole’ town, and as a a lifelong geeky fangirl of sci-fi, superheroes and the like I was SO there. It was the first year for this event here, and it was a smaller con. Smaller can also mean less crowds and less waiting in line, especially since a lot of people had not heard about the event (I saw a lot of “wish I had known about this!” comments after it was over). But it was still well-attended , and it was if I had finally found my people. I was positively giddy, and all day long I felt like my son at 1:06 in this video, “This is the best thing of my life!” The video (our own little brush with media and pop culture when my son’s enthusiastic response to playing with a sea lion briefly became one of those “viral videos”) even came up a couple times in conversations about using media opportunities to help bring about more than entertainment, but also a greater good.
When we arrived downtown it was right at starting time, but there was a loooong backup to get into the parking deck. I tried not to go into fits, thinking about the fact that I was wasting time in the car. Must. See. COMIC-CON! Finally I asked my husband if he could pleeeease park the car without me, and I jumped out with oldest child and scampered to the convention center. I then proceeded to break rule #1 of comic cons: make sure you know what line you are waiting in. Luckily, I didn’t waste more than a minute, ha.
Commence the joy.
Kids get in free with a paid adult so we had our two boys with us for the first two hours, then my parents kindly picked them up. The boys enjoyed seeing all the superhero, comic and sci-fi merchandise. My youngest son wore a shirt with the Autism Ninja, our very own family superhero.
My oldest was wearing a Minecraft shirt, and the highlight of his day was when someone dressed as Steve gave him a thumbs up. There were a lot of cosplayers, and we were impressed by how elaborate and creative some of the costumes were.
I have no idea what that third set of people are supposed to be, except that they are now IN MY NIGHTMARES! And look at that intricate cardboard Groot! But baby Rocky, however adorable, was just NOT having it.
I woke this morning after a full nights sleep and stretched, feeling completely refreshed. I then realized I also felt completely sad. It took me a moment to remember why… Robin Williams had died, a victim of the Beast. The recollection of that awful truth, the reality of it, sucked the joy out of my morning. I no longer felt refreshed. Ironically, that is how depression can seem. And although today I am not actually depressed, just deeply sad, I know all too well what it is like to battle the Beast.
Robin Williams embraced life with creativity and manic intensity. He was the ultimate embodiment of “Not Boring”. He was able to gift the world with great beauty and uniqueness because of his incredible talent and fervency. But the ability to feel so deeply, live life so intensely, can often come at a great price. Many other great artists also struggled with depression or mental illness. Continue reading
Dear Father: I once watched you and your adult son, who has Down Syndrome, enjoying an outdoor summer concert together. I still think about that day, because I couldn’t stop staring at the two of you (but not for the reason one might think). The relationship you have with your son was one of the most beautiful, precious things I have ever seen. It brought tears to my eyes. I wanted to talk to you and your son so badly, but out of respect for you (and my husband, who gets embarrassed when I make a scene) I simply observed from a distance. But today, as I reflect on what I witnessed, you continue to have my admiration. Continue reading
Many years ago, back in our preschool days, my family had the pleasure of visiting the Crossville Model Railroad Club in Crossville, TN. It was an incredible experience, not only because of the intricate train displays, but also because of the overwhelming kindness we encountered during our visit.
We were traveling to Nashville and had heard about this impressive train display that was en route. We knew we had to see it since there were TWO little train fanatics in our house (ages 3 and 4.5). Our home was basically all trains, all the time, so this was an opportunity we couldn’t pass up. The Model Railroad Club rents space in an outlet mall and has a whole storefront FULL of different size model train layouts. The only problem was that we would be driving through on a THURSDAY afternoon, a time when they used to not be open. I contacted a club member named Mike Braunstein via e-mail about a week ahead of time and inquired about setting up a private train viewing, as indicated on their website. He responded very kindly that they did not generally do private viewings for anyone but groups. He continued on to say that they usually had some folks working on the displays almost every day, and “if you care to stop and see if anyone is there I am sure they would be more than glad to show your family around. Depending on which display group is working they can probably run a few trains.”
*SIGH*. “Stopping by” and risking letting my kids see a train utopia through locked doors without actually being allowed to go inside was NOT an option. My youngest has an Autism Spectrum Disorder and at the time my oldest was struggling with anxiety and social phobias, and putting them in a potentially disappointing situation like that was just asking for a meltdown. I have long held the philosophy, “Ask for what you need,” and find that some people are quite often willing to make accommodations to help us if I give them a simple explanation of my family’s situation. I do not EXPECT people to accommodate us, I only do this if I think it will not be a burden, but figure it can’t hurt to ask. After a LOT of careful thinking I emailed the following reply:
Today I celebrate all women. Your love and nurture of those around you have the power of creation and healing. Whether you have given birth or not, you give life. Thank you for adding beauty to the world. I hope you had a wonderful day!
For an extra smile, here is a Mother’s Day gift that my friend Meredith received from her very perceptive child.