MFOFC Leadership Series

Have you met my child? He’s a human being.

Have you met my child? He’s a human being.

Melissa

Fenway FunAttending the Family Leadership Series has been life changing, just as my friend Patricia had said. I have, for most of Caleb’s life, defined myself as a special needs parent. I have framed all of my goals around his special needs and his special education rights. My child’s needs aren’t all special, nor are his rights…my child still has basic human needs and basic human rights. People seem to forget that. I sure did. Doesn’t that sound awful?

When people ask me what I want for my child I say I want him, happy and loved. In my head I am thinking, safe and protected. I think most people think “safe and protected” when they think about what we owe to those with special needs or intellectual disability. And we do owe them a safe place to live, we owe everyone a safe place to live. My child doesn’t have a special right to not be abused…that is a basic human right. My child doesn’t have a special need for a home…that is a basic human need. Does my child need special accommodations to achieve these basic rights and needs. Yes, he does.

None of us trust in the inherent goodness of others to protect our children when they are out in the world. We teach them (hopefully) to protect themselves. My son may not ever be able to do that. My son may, like many with intellectual disability, be under the impression that friends don’t hurt us. That’s a pretty reasonable belief. Friends don’t hurt us. But what if someone we think is our friend, hurts us? You and I could say, that person isn’t our friend and we wouldn’t let it happen over and over (hopefully.) This is where Caleb has a special need. If he believes friends don’t hurt us, and a friend hurts him then clearly…well, in his mind, then he couldn’t have been hurt because a friend wouldn’t do that. It’s absolute thinking. It makes him a rule follower, it also makes it impossible for him to protect himself as fully as you or I.

So, in order to protect his basic human rights and needs, he will need special accommodations. He will need someone to make sure he isn’t being hurt physically or emotionally. He will need someone to make sure he isn’t robbed blind. The entire conversation about Caleb and his future are so much different with this one change in thinking. Caleb has basic human rights, he has the same basic human needs as I do…as you do…he needs special accommodations to provide for that. No more, no less.

By focusing on special needs or special education, I have been shortchanging my child. I’ve been limiting his world. Have I been limiting it for the right reasons? I guess, if there’s ever a “right reason” to not insist on protecting your child’s basic rights, it would be love…and I do love him so. My parents don’t love me any less, though, and though I know it has hurt their hearts to watch me struggle and fall…they’ve never questioned if it was right to “allow” it or not. My son has that same right. He deserves (what is now my favorite phrase ever…) the dignity of risk.

A new friend I met through the Family Leadership Series commented regarding her son who is home bound and home schooled…that she is institutionalizing him at home. Ouch! But what an amazing observation. I have always wanted more for Caleb than an institution, so why am I planning his days and his future with just a slightly modified version of that for him? Why continue to separate him rather than insist on him being included? Why am I not pushing to open the whole world to him?

“Dunno,” seems like a pretty crappy answer. “It’s easier,” is even worse.

Are you a leader?

Are you a leader?

Melissa

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.

Which are you?

Which are you?

Melissa

This story was passed out at a leadership series I am participating in. We all have a choice, we can only decide for ourselves.

Carrots, Eggs or Coffee?
Author Unknown.

A young woman went to her grandmother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one would pop up.

Her grandmother took her to the kitchen. She filled three pots with water and placed each on a high fire, and soon the pots came to boil. In the first pot she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word. In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her granddaughter, she asked, “Tell me what you see.”

“Carrots, eggs, and coffee,” she replied. Her grandmother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The grandmother then asked the granddaughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg. Finally, the grandmother asked the granddaughter to sip the coffee. The granddaughter smiled as she tasted its rich aroma then asked,

“What does it mean, grandmother?”

Her grandmother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you?” she asked her granddaughter.

Family Leadership Series

Family Leadership Series

Melissa

Late last week, when Eric was at school picking up Caleb, the principal of the school happened to bump into him. She brought up a program that she thought he and I would be perfect for…but…either she couldn’t remember the name or Eric couldn’t. When Eric first brought it up, I thought we were being asked to speak at some sort of conference. I might have gotten a bit nauseated (shhh) at the very idea but I STILL said, “OK!” Why? Because speaking up for Caleb, until he can speak for himself, is my most important job. She promised to forward the information soon.

Then, on Monday, a message came across our Special Education Parent Advisory Council e-mail list. It was a forward from the PAC coordinator. I skimmed it and realized that this must have been what the principal had been talking about. First, I took a huge breath because I was now positive that this wouldn’t involve me having to speak publicly. Then my shoulders sank when I saw the schedule. It is SEVEN days…three of which are Fridays. I work!

I turned it over in my head for a day and then yesterday afternoon I just decided that it was that important. I have very (very, very) limited paid time off available and I have a lot planned for 2014….we have Advocacy Day in March and International Conference in July…plus, I do like to spend some of my time vacationing occasionally rather than always using it for fragile X stuff. I do need to step back once in a while! This might mean missing out on some vacation time with my family, it might mean less time in California around the conference and in DC around advocacy day but that is OK. No one can do everything, every time. I’m a big girl, I can prioritize and make hard choices. Are you convinced yet? It took me a while to get there!

I downloaded the application and, if I hadn’t been convinced when I started filling it out, I was by the time I finished. The application forced me to think about what I could learn, how much I could grow and how I could make Caleb’s life better.

The Family Leadership Series is comprised of three Fri/Sat (2) day workshops and one final day wrap-up Saturday session.

The workshops (which includes an overnight at hotel) will focus on:

Initiative and Leadership – Participants are given information on the background of the family support movement, leadership, advocacy and the significance of self-advocacy, how to effectively advocate towards creating change and ways to influence funding and delivery systems.

Creating A Vision – Participants learn how to create a vision for your loved one and innovative ways to think about community living and family support, best practices and meaningful options. Families are supported to “imagine better” and to create a vision, with and for their family members, that becomes a guide for their leadership and advocacy.

Policy Making at the Local, State and Federal Level – family members receive information on how to develop networks with legislators and families, on how to access and control resources that affect family stress and satisfaction and how to use legislative change to procure resources.

Our one final day wrap-up session will focus on:

Taking Care of ourselves – Relax, laugh, and experience the value of taking care of you.

What could be more important than that? I came up with nothing. So I emailed the application.

This morning I received an e-mail thanking me for applying and asking for a little more information. Shortly after responding to that, I got a call. I am IN! Yay! I finally told Eric I had applied, celebrated with my birches and then shared with allllll of my facebook friends, of course!

One of my friends in Louisiana reminded me she had done something similar and described it as “life changing.” Then I realized that another friend from Minnesota had shared a similar program before and then a friend in Newfreaking Zealand said she had also done a similar program and that it was an international program. Well then! I was curious, also, when I decide to do things I like to convince EVERYONE that they should do it too! Come on! It will be so much fun!! Ahem. So, I did a little reading (on Wikipedia, naturally) and learned…

There are programs of this type in over 35 US states and several other countries. The program was developed in 1987 in Minnesota by the Govenor’s Council on Developmental Disabilities (GO Minnesota!!) and financed by the U.S. Administration on Developmental Disabilities (part of the U.S. Department of Health and Human Services.) It is part of a growing trend of empowering families and individuals with disabilities to advocate for themselves and their right to live life as fully as possible within their larger communities.

So I clicked around and gathered all of this in one spot so you too can go to a workshop like this one!

If you are interested in participating in the program in Massachusetts, please visit the Massachusetts Families Organizing for Change website for more details:

If you are interested in participating in a similar program where you live, please visit the Partners in Policymaking website to view the list of active programs complete with contact information for the coordinator for each location:

  • In the United States: Active Programs (click on the link, it will open a new window.)
  • Other Countries: Active Programs (click on the link, it will open a new window.)

Partners in Policymaking also offers 6 online courses if you are not able to attend the classes in person.

So. What are you waiting for? Sign up for a workshop, it will be fuuuuuuun! (If not “fun” exactly from a carrier who has anxiety perspective…it will be worth it.)