Community Support Network

Eastern Massachusetts Fragile X

My Pins on Pinterest

  • hell hath no fury!

  • So what if instead of thinking about solving your whole life, you just think about adding additional good things one at a time. Just let your pile of good things grow. #quotes

  • Free Fonts

  • the font snob club : free fonts! | the handmade home

  • Funny Pictures Of The Day – 81 Pics

  • apple pie on the rocks: 1 oz vanilla vodka, 1 oz. fireball, 4 oz. apple juice, pinch of cinnamon, brown sugar on the rim, cinnamon stick for garnish

  • Made it and drizzled olive oil and balsamic vinegar over it... Soooo Tasty! Chicken Caprese Sandwiches - open faced, perfect fresh and healthy 15 minute summer dinner.

  • sans serif fonts

  • Is it Autism or is it Fragile X? Fragile X is the most common known genetic cause of autism! #LIUB #fragileX #autism #awareness

  • Follow Me on Pinterest

Are you a leader?

Back in December I signed up for a Family Leadership Series organized by a local group, Massachusetts Families Organizing for Change. It took a bit of positive self-talk before I decided to go for it but once the decision was made I was excited! Until last week when the time came for me to actually get out of the truck and walk into the hotel. Then I was just nauseated. But still, I did it. Mostly because Eric wouldn’t unlock the doors to let me back in (Kidding! I didn’t even bother trying because I knew better. He would have peeled out laughing and blowing encouraging kisses in my general direction.)

As I sat in a conference chair, shuffling through the handouts and waiting for the fun to begin I began second guessing myself…What was I thinking? I’m not a leader! Sure, I’m a Community Support leader for the NFXF but that is a technicality…no one else wanted to do it!

Leaders are decisive, they’re visionary, they’re confident, they’re motivated, they’re persistent…all things that I am NOT. I’m not. Decisions paralyze me, I’m not that smart, I’m definitely not that confident, I’m lazy and I give up when things get too hard. I’ve always been that way. I will always be that way. Who was I kidding? My hands were shaking so hard I kept spilling my cup of tea when I tried to get a drink. LEADERS DO NOT SHAKE. I was a fraud and *shit* they’d already started…too late to sneak out.

I looked at the first item on the agenda after the introductory words and saw…introductions, for the next 2 hours. The coordinator finished her welcome speech, which I’m sure was inspiring and motivating but I was too busy freaking out to listen. Our next instructions were that we were to stand up and introduce ourselves, we each had 3 minutes, oh…and name one of your leadership qualities. Fuckfuckfuckfuckfuck…I had just spent the last 10 minutes listing all the ways in which I was NOT a leader. I’m NOT A LEADER! I was going to be exposed in first hour, great.

Then I noticed it was quiet…and the very nice couple next to me was sitting down, wait, when had they stood up? WHY WERE THEY ALLOWED TO GO TOGETHER?? I should have had another 3 minutes! No fair going together, I thought I’d have more time.

I heard someone laugh. Shit. I’d said that last sentence out loud. *insert nervous laughter* while I stand up slowly. I know I said my name, I know I said Caleb’s name and I know I said fragile X…I even said a couple facts about fragile X…then it was time. “My leadership quality is….I’m bossy.” People laughed, I sank back into my chair and I heard the coordinator say, “Oh, that’s right…the others hadn’t said a leadership quality, let’s go back to them!” ARE YOU KIDDING ME?? If I’d been listening I would have snuck right on past it too. So typical.

Once past that little test, I was able to relax and listen to the rest of the introductions. I learned a lot of things about the other participants but two things stuck out at me: 1. They were all there for the same reason I was, to help their children and 2. They weren’t all that convinced they were leaders either. None of us felt all that confident in our “leadership quality,” many responded as if their answer was really a question. I would make it through the first few hours at least.

I made it through the first break, a history lesson on the organization and then hit lunch. I was the first person in line so I was able to get lunch, grab a drink and sit down at one of the 4 tables…it’s way easier to be the first to sit down when ALL of the tables are empty, btw. Score! Lunch was fine, our mouths were full…most of the people at the table were able to start conversations easily with total strangers so the pressure there was off.

I looked at the agenda again…another history lesson, this time on disability policies through the years, another break, a parent panel, dinner and finally art therapy… I was going to make it through the entire first day! Piece of cake.

The history of disability policies was not a piece of cake but it deserves a post of it’s own.

The parent panel was nice, two graduates of the program spoke, but it really just emphasized that I didn’t belong here. These were superstars…seriously, both have had fellowships since they graduated the leadership series to study disability issues. One of them is a documentary filmmaker who won an Emmy for a documentary that aired on HBO. (Have You Seen Andy? If you’re curious.) And for her fellowship she conceived and filmed a ten video series on Down Syndrome called “My Great Story” in partnership with the National Down Syndrome Society. Yeah. I did not belong here with them. *sigh*

Dinner was hard too, I was the LAST to sit down this time which had my anxiety through the roof. I stared at my dinner the entire time and snuck away as quickly as possible. I didn’t say a word to anyone at the table.

I was pretty disheartened and sent a few whiny texts to Holly and Eric while I contemplated skipping the art therapy session. Honestly…my art skills are non-existent. I already felt like a failure and really, really didn’t want to add embarrassment on top of it. Ugh. I went anyway.

The art therapy session was unexpectedly fun! It was informative and generated a lot of laughter. Most of us were nervous about our lack of artistic talent but it so wasn’t the point. In fact, some of the best ones were the ones where the people had to explain what we were looking at. It was very revealing. By the end of the session, everyone was sharing their drawings and laughing with the people at their tables. It was a great icebreaker.

A few people decided to go to the hotel bar after the last session but I’d been holding it together (mostly) for 12 hours at that point, I was done and there was not going to be any benefit to adding a glass of wine on top of my exhaustion. I felt so relieved to end that first day.

Just before turning out the light, I glanced at one of the drawings I’d done.

I’m not overly proud of the technique, my head is freakishly small and it looks like I’m wearing fish for shoes, but drawing a picture of yourself in the rain tells you something about how you handle stress. I was the only person to not draw myself alone in the rain. I had Caleb with me and I would have had Eric too if I hadn’t run out of time. And, I was holding the umbrella directly over Caleb, shielding him from the rain. That may not always be the truth, but it’s the truth of how I want to be…of how I strive to be every day.

I was still pretty sure that the answer to the question, “Are you a leader?” was still no. But I was also pretty sure that my instincts…my nature…is one of protectiveness toward the one I love the most and that made me proud enough.