Thursday, April 17, 2014

The importance of listening.

I want to talk a little about listening to people. 

 I was at work, fell while I was outside, due to a problem with my balance. No one was around to assist me, so I had to try to get up on my own.  I eventually got up and went inside my workplace and tried to tell co-workers and supervisors that I wasn’t feeling well. 

 My supervisors listened to me, but my coworkers thought I was playing a game. Eventually an accident happened and I had to be taken to the hospital by ambulance. It wasn’t until the accident happened that people took me seriously, therefore, I felt like I was being treated as a child. 

When people tell their parents or teachers something that may sound silly to them, don’t assume that they are playing games. For the person who has disabilities, that is an important message to get out; they need to be heard. I think listening is a big way to help their confidence. 

Thank you for listening to my blog. 


Spring is here...and challenges too.

The beginning of Spring was late, weather wise. 

Due to that, it's going to be hard on food processing, which will make it hard for us to get some of the good we need. I've done some activities this week. I went to a birthday party, I met a couple of new people from CIF (Center for Independent Futures in Evanston where I live) that are new to the community I belong to. 

I am going to try harder to go to some CIF activities if it doesn't affect my work schedule. 

When we are looking for jobs, we want to be sure to find one that has a set, or steady schedule, one that gives you more than one week's notice at a time, and that you can work the same days and times each week. The reason I haven't participated in activities is mainly due to my work schedule, which means I can't always make plans in advance. 

Allergy symptoms and other health issues can also play a role in making plans. We want to have jobs, but part of life is taking whatever we can get sometimes. I am going to be going on vacation next month to Boulder, Colorado, to see all the mountains, and visit my brother and his family. 

Until next  time, stay positive! 

Tuesday, April 8, 2014

Hello again. I am glad to be back.

I decided to take a break during the winter months, and I am happy to be back!

This winter turned out to be a journey, and it has affected me in many ways.

Cold weather and medicine are not a good combination due to side effects. It was very cold and wet for close to 7 months. I discovered I have a balance problem, which has required going through physical therapy.  I'm now trying to keep myself motivated to do the exercises at home, on my own.

Besides that, it has been hard to get to work due to all of the snow and ice this winter, I've had to allow more time to get around. Winter can make it hard on people with disabilities, who already have problems getting around, the added time can add up. It's important to keep track of our responsibilities, and keep working at it, because it will eventually make you stronger at doing things independently.

I will write more again soon. Happy Spring!

Monday, December 2, 2013

What am I working on now? THE MAGIC CHAIR

Hello again,

If you have been following my blog, you know that my brother Greg is a movie maker and that he made a movie with me, which really surprised me. I really enjoyed it because I got to spend time with my brother and go to some new places and experience new things.

Now Greg has asked me to help him with a new project called THE MAGIC CHAIR. He asked me to be on his advisor board because I have a gift for advocating.

You can read about the new project and watch come videos here: THE MAGIC CHAIR


As I have told people before, everybody needs a place where they can be themselves, and be respected for who they are. My brother calls that place a magic chair, and everybody needs one.

Please look at THE MAGIC CHAIR.  I hope you will contribute if you can. because we can't build it without you.

Thank you.

- Alyssa

Monday, November 4, 2013

Interview with an expert: Margaret Tanenberg, Director of Family Connections and Community Resources at Center for Independent Futures

If you follow my blog, then you have already read what I feel is important for parents to know in planning for a full life for their son or daughter. Tara and I interviewed people about how they feel things can change in regards to improving education and support services for children and adults with disabilities. We wanted to get expert opinions and information from professionals and advocates about how we can all support people with struggles in our communities. 

One of the first people we interviewed is Margaret Tanenberg from the Center for Independent Futures. 

Here is what happened:

Alyssa- What do you hope for your child to gain in terms of knowledge or reactions to life's challenges?

Margaret- I hope they will have confidence, knowledge about how to face things head on or access to the information or support they need to problem solve.

Alyssa- What were your biggest struggles raising a child with special needs? What, if anything changed? For better or worse?

Margaret- I struggled getting the school system to see his gifts. There were pockets of people who did, but most didn't. Children in special education have labels and are stigmatized by them. The nature of special education is to dwell on differences instead of recognizing that each child presents with different gifts and strengths. 

Alyssa- What are parents struggling with today? What concerns do they have? What challenges do they face?

Margaret- The biggest concern of advocates and families today is not knowing who will be there for their child when they are gone and ensuring their child's hopes and dreams are honored and realized. Families struggle to find supportive individuals and organizations that can carry out those hopes and dreams in a person centered way. Beyond this, knowing what options for support services and funding are available is a challenge. Having the financial wherewithal to support the individual for the rest of their life. 

Alyssa- What information do you wish all parents of special needs children had? Have any words of encouragement?

Margaret- Be mindful of transition planning and support at the high school level. 2/3 of schools are out of compliance with federal mandates regarding transitional support. It’s important for parents to be as knowledgeable as they can be in order to advocate for their son or daughter and make sure their ISP taps into their hopes and dreams. 

Every parent has a vision of what they want for their child and this vision may not always be aligned with that of their son or daughter. Let your child self discover, make mistakes and learn. 

Explore alternatives and be flexible. Allow children to be their own person. 

Alyssa- How do you encourage your child to build skills without codling, enabling or pushing too hard?

Margaret- I think its important to give opportunities for learning and growth. Make things a positive experience. It's ok if things aren't perfect or messy. It's ok to make mistakes. You move on and learn life lessons. 

Alyssa- Thank you for taking the time to talk with me, Margaret.

Margaret- You are most welcome. Thank you for inviting me.

Saturday, June 29, 2013

An Interview with an expert: Gregory Ruzzin: Brother/Filmmaker

Alyssa: What did you learn from making our movie, "Lost Child?"? How did you get inspired to help me with the blog? 

Greg: The movie gave us the opportunity to reconnect since we haven't lived in the same state in many years. I learned about your daily challenges and it was eye opening.

The blog grew out of our conversations after the movie wrapped, about what was next. We wanted to keep the work going and the conversation rolling even after the movie. I thought it important to keep your voice out there so people can learn from you. The blog also came about at a time where you were wanting to learn more about computers and this gave you an opportunity to do something on your own.

Alyssa: What was it like growing up with a sister with special needs?

Greg: I would say that growing up with you was like growing up with any brother or sister, special needs or not. Like you, Mark (our older brother) and I were learning about the world and you were a part of that learning. I never felt like we were that different from other families, but Mom and Dad always made sure to treat you the same. They made a huge effort to include Mark and I in the effort to help you get the support you needed. We never resented the extra attention you got, like other siblings I have met. We never felt that because Mom and Dad made it a family thing. We were all in it together. Definitely a team effort.

Alyssa:  How has the movie changed your perspective of people with disabilities?

Greg: I feel that I have a broader view of what you are up against, as well as of how the world we live in isn't as accepting as it could or should be. This experience made me more aware of myself and the expectations that we place on other people. It reminded me that everyone is their own person and does things in their own way.

Alyssa: Has this experience made you more of an advocate?

Greg: Yes, definitely! The movie turned me from a brother into an advocate.

In fact, I am working on a documentary film project called "The MagicChair" and you are helping me with it. It is our goal to create a place where individuals with disabilities can tell their own stories, and your story will certainly continue to be one of those.

Best wishes,
Alyssa Ruzzin

Wednesday, June 19, 2013

An interview Megan Baer - Community Life Coordinator and Life Skills Tutor - Center for Independent Futures

Alyssa: Hi Megan. Thank you for taking the time to meet with me. Do you see any patterns of need amongst the adults with disabilities you serve? 

Megan: The patterns of need I observe are:
            -Job placement
            -On the job support

-Support in managing social connections

-Helping individuals with disabilities to advocate for themselves while out in the community
 -Because people with disabilities communicate and interpret things differently, people often get taken advantage of in stores and on the street. 

-In regards to the families we serve, we often help support families in knowing that we can support individuals with disabilities while also honoring the person’s hopes and dreams. We often work with families in breaking assumptions and segregative thought patterns that make up the disability support system.

Alyssa:  What are individual’s lacking in order to live the lives they want to live in their communities? 

Megan:  The biggest flaws in my opinion both nationally and here in IL are in regards to social connections. People with disabilities don’t often have the opportunity to ‘bump into people’. The institutional model that currently prevails in many states as well as here in IL offers little flexibility and choice. We put people in structured day programs despite personal interests, passions, desires, chemistry or connections. There is limited availability in where these folks can work and how they spend their days. 

We need more focus on creating meaningful connections for individuals with disabilities. We can’t expect jobs and social opportunities in the community to magically appear without individuals advocating and making connections with potential employers and friends.
Beyond the lack of funding for support services, we are lacking agencies with progressive models that value an individuals right to choose the life they want to live.

Alyssa: How do perceived needs and wants differ between disabled adults and their caregiver, guardian or support network? 

Megan: There are reasonable fears instilled in parents regarding their children from the time they are born regarding what their child will, wont, is and isn’t capable of. The ability to take reasonable risks is a human right. It is a big part of growth. Making mistakes and learning coping skills is essential to a full, independent life.

Alyssa: Thank you for sharing your thoughts with me.

Megan: You’re most welcome.

You can learn more about the Center for Independent Futures and the important work they do at: