A Letter to the Father at the KOS Concert: I watched you dance

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Dear Father: I saw you and your adult son, who has Down Syndrome, at a KOS concert this past 4th of July weekend. I couldn’t stop staring at the two of you, but not for the reason you 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 admired from a distance. But today, as I reflect on what I witnessed, you continue to have my admiration. Continue reading

Trains! And Kindness!

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.

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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:

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A Celebration of Epic Women

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.

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Sad News

Sophie the sea lion. Photo credit: Smithsonian National Zoo

Sophie the sea lion. Photo credit: Smithsonian National Zoo

I am devastated to report that Sophie the sea lion was found dead this morning. She was only two years old. The cause of death is still undetermined, and she seemed fine the night before her death. This is a huge loss, and my thoughts are with the entire Smithsonian Zoo family. Sophie was a beautiful, playful animal who brought great joy to everyone who visited her. She especially enjoyed interacting with children, much to their delight. Sophie had many more happy years ahead of her, and will be greatly missed.

I have been having crying spells ever since I heard the news, and don’t know how I am going to tell my children. We all loved her, and my boys consider her a very special friend. We first met her in February when she played with my youngest son, who has an Autism Spectrum Disorder, and it truly was one of the most incredible, beautiful experiences of our lives. A video of  the encounter received some media attention and provided an unexpected opportunity to spread Autism Awareness. We were finally able to go back and visit her just two weeks ago, and my children played with Sophie for over an hour. I am so glad we got to see her one last time, and can’t believe she is gone. I am absolutely dreading telling my children the sad news.

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Sophie, we will miss you so much! Thank you for being our friend.

 

What I learned by having a “viral” video

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Two months ago a video of  a sea lion playing with my son, who has an Autism Spectrum Disorder, unexpectedly got a lot of attention.  An earlier post talks more about the story behind the video, as well as why I decided to make a personal moment public. Basically I thought it was cute and my friends and family might like to see it, other special needs parents might be able to relate, and it was an opportunity to spread Autism Awareness. What I didn’t expect was that within a week’s time it would have over 90,000 views and be spread all over the world (no, not one of those “mega-viral” 1 million views kind of videos, but still a surprising reach). Before I posted it to the internet I was convinced I had thought things through, but the results still caught me off guard. I found the whole unexpected process incredibly exciting and incredibly exhausting. I recently agreed to do a television interview about the experience, and you can watch it here on the website for ABC affiliate WRIC Channel 8. They called it, “Going Viral: What You Need to Know Before Posting Online”. I did the interview and wrote this post in the hopes that by sharing some of our crazy journey it might help other people in a similar situation. I don’t have any advice for you if you have a video that you hope to turn mega viral and use to make lots of money. But if you have a story you want to tell or content to share, and want some tips on how to protect your rights and your family in the process, then keep reading. Yes, when this all started I thought it was possible we might make a bit of money, but that was not my main goal. I just wanted to share a cute video of my cute kid and thought it might also help people.

First, and very important, ask yourself if the benefits from what you post will outweigh the risks. What do you hope to get out of the experience, and is it worth what you will give up? If you just want your 15 minutes of fame you need to be prepared for the loss of privacy and the scrutiny that comes with it. All that attention from strangers feels good for about a whole day, but then in a flash you are yesterday’s news. If you are doing it to make money, let me just say you probably won’t make very much. If you are allowing yourself or your story to enter the public eye because you have something important to share, or you want to help people, then I applaud you. I have a new-found respect for anyone willing to make a public stand for what they believe in, because it is a scary thing to make yourself vulnerable to the prying eyes, and possible criticism, of strangers. That part was what scared me the most. Before I posted the video of my son I thought it through as carefully as I could. It’s not a video that makes fun of him or something he will be embarrassed by when he gets older. I asked his permission before sharing it, as well as before I shared that he has an Autism Spectrum Disorder, because it was important to me that I have his consent. I made sure that throughout the whole process my son was treated with respect. Even though I thought that it could be an opportunity help spread awareness and acceptance, I tried to make sure it didn’t sensationalize Autism or exploit my son. I also asked myself if I was compromising the safety of my family by allowing our video to been seen publicly. Is the loss of your privacy worth it? I felt safer about releasing our video because my son’s face was obscured in shadow. At the time we had not decided if we wanted to publicly release his image. I should have been more emotionally prepared for the fact that even if I didn’t release his image, it would get out there (more on that in a bit).

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“It’s Nice to See You, Sophie!”

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After waiting for weeks we finally had a day with good weather, open schedule, and healthy family members, so the four of us were able to head back to the Zoo this past weekend. Our last trip there had surprising results when a video of my youngest son playing with a sea lion gained international media attention. It also turned into an unexpected opportunity to spread Autism Awareness (you can read about our experience here). My children had been anxious to go back and visit Sophie one more time before the heat of summer, and they still wanted to get a good look at Bao Bao before she got much bigger.

My son, Alex, has been talking about Sophie for weeks and he couldn’t wait to go back and play with her. I wanted to prepare him for the fact that she might not “recognize” him (aka: she may not want to play with visitors that day). Alex has a form of Autism, and it is very important to help him be mentally prepared as much as possible for experiences, both good and bad. We talked about the fact that even if Sophie didn’t want to play it would still be a nice day at the zoo and we would enjoy seeing the animals. Secretly I prayed that he wouldn’t be disappointed, and had an ace up my sleeve. Actually, it wasn’t an ace, it was a shiny pink ball.

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Confessions of a Clearance Shopper

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In light of the fact that I have spent the past three days scouring post-holiday clearance sales I thought it was a good time to revisit an old post I wrote several years ago. Even though my kids are older and not into as many of the Easter toys I still find enough good deals to make me feel like a winner. I am way too excited about the bag of Goldfish snack-packs I got for 30% off yesterday. Like, ridiculously excited. I may have had a horrible day otherwise, but at least I achieved victory over the Goldfish! I mean, come on, 30% off! But I must confess, even though he stopped being a member of our immediate family years ago it still seems wrong, very wrong, to walk past a 50% off Easter Thomas and not snatch it up. Oh, and for the record, he’s a Tank Engine. Thomas the Tank Engine, NOT Thomas the Train. He IS a Tank Engine, he PULLS a train. You gotta get these crucial details of life right, people! Anyway, let us embark on a clearance-shopping adventure from years past, but please keep in mind that it is intended to be tongue-in-cheek and MAY be exaggerated… a BIT…

We waited so long, with so much anticipation, that’s it’s a bit of a letdown when it’s over so fast. I was so excited, and lay awake at night dreaming about it, and jumped out of bed eager to experience… the post-holiday clearance sale.

Let me begin by explaining to you that over the past few years I have become VERY compulsive about saving money. Because, SAVINGS! Clipping coupons has become one of my hobbies, and I have to resist some hoarding urges when items are on sale. Not a crazy coupon lady by any means, BUT I confess I get a little too worked up and even tremble a bit when I debate how many to buy when something is on sale. I need to make sure I have enough to get me through until the next sale, because it would clearly be a tragedy if I had to pay FULL PRICE! Clearly. Oh, and those sales where you have to get TEN items to get the discount? They make me feel SO neurotic, constantly counting and counting again. Did I accidentally get 11? And HOW MANY SETS OF TEN WILL I NEED? And you would not believe the annoyance I feel when my $2.99 box of cereal goes on sale right after I bought it (even if I DID use a coupon). So just take my word for it that I take my clearance shopping VERY SERIOUSLY. So of course I get VERY excited when items are discounted the day after a holiday. Ridiculously excited. Because these savings are VERY IMPORTANT.

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