Community Support Network

Eastern Massachusetts Fragile X

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Family Leadership Series

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.)