The phone calls come in consistently for my sister. They
could be about anything from a problem at work to needing money, medication prescriptions, CPAP updates, bills, MASSHealth, issues at her center, or many other unexpected things.
I have been at LABBB
for 31 years. My sister is 43 years old and has Down
syndrome. She graduated from LABBB in 1998, and she lives in a group home in Lexington with four other LABBB graduates. I tell my story over and over and over, because my experience as a guardian has changed the way I look at what we provide as a service in LABBB. It has also changed the way I look at the archaic systems of special education. And it changes the way we are building and will build the LABBB community to support each other
in the future, which is progress.
We need to look to the future to develop the right plan in the present moment. We hear about this concept, "backward design," but I can't tell you how essential this is. I have spoken to many, many parents whose sons or daughters have graduated, and these LABBB alumni parents are showing up at our Transition conference confronting difficult decisions. They are also the parents who are saying, "I wish I had started planning earlier."
When my mother and father passed away within six months of each other 3 years ago, I immediately started the process of becoming my sister's guardian. My philosophy and my thinking about what LABBB is doing and what special education should be focusing on changed dramatically over these years. I was experiencing something I never thought I would have to-it was real, and it was overwhelming.
I had many emotions, knowing that this is what family does to take care of each other. But it was also the brutal, honest truth of what every family and sibling will face, and I need to share this with the LABBB community every step of the way. I hesitated to write about this in the beginning, because I didn't want anyone to think this is a negative experience. If you have done the preparation, it doesn't need to be stressful.
Our mission in LABBB is to prepare you. I share the mistakes our family made, and if you look at all the details of what my parents actually did, we were in a good place, yet it was still very difficult. If we do not talk about these things, then we are not doing our job. We are not giving you the information we have, so you can make some decisions about how you want to plan for your son or daughter's future.
When I started the LABBB podcast, this was supposed to be the first episode. I recorded versions of this so many times, I can't tell you. It was very emotional; sometimes I tried to force it, but it was rehearsed and not natural, and I could not bring myself to share it. Yet this information is everything I want our community to hear.
Who is going to prepare you? Who will give you the honest truth? We are in this together, and your experience in LABBB will be supportive from the first day your son or daughter enrolls and for life, because we do not just stop at age 22.
Please take the time to listen to this podcast. Even if it doesn't connect with you now, perhaps it will along your journey.
We are looking forward to the 2019-2020 school year!
The Recreation Brochure should have hit your homes the second week of August. If you did not receive one please contact me at: prizzo@labbb.net.
