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.
Monday, December 2, 2013
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
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.
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:
-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:
You can learn more about the Center for Independent Futures and the important work they do at:
Monday, April 15, 2013
Phew! We made it adulthood! If you are still reading, I’m sure you have realized how important it is to be prepared, thinking one step ahead. We hope you have found some of our tips to be helpful. Thanks for reading!
The adult system is a whole new ball game. The rules and regulations are different than the child/education system. Quality & availability of services differs from state to state, so find out where your state falls and what your child’s options are.
-A lack of funding for adult services in many states makes it a challenge for individuals to move onto something else. Many people wind up staying at home with their families with little to do during the day. Depending on the severity of their disability, parents often have to stay at home to care for their adult child missing out on employment opportunities themselves.
-A lack of life and job readiness skills is also an issue as well as a lack of jobs in the community.
-Partner with local agencies and non-profits with missions to create grassroots movements around addressing some of these issues.
www.jjslist.com is a great example.
-Let your adult child decide their next steps, if possible. Society has a tendency of boxing and labeling individuals with disabilities. We tell them what they can and can't do and what they are or aren’t capable of. It is a culture of compliance where individuals, who are largely dependent on their families or the state, have to rely on others and do as they are told.
-No matter how severe the disability, this process CAN and should be as person-centered and self-directed as humanly possible.
-Consider life skills tutoring to bolster independent living skills.
-NEVER assume something isn’t possible. Though accomplishing certain goals or mastering specific life skills may seem impossible, give it a chance. Even if learning to use the computer, meal plan, budget or grocery shop takes 2 years to learn, it is worth it in the end. Patience is important. Learning never stops for any of us and those with disabilities are no different. Their capacity to learn and grow is the same as you and I. Individuals may take longer to acquire certain skills but this doesn’t mean it can’t be done.
-Be prepared for life transitions. What will happen when you are gone? Though these topics are tough and unpleasant to think about, having a plan is in everybody’s best interest. Decide who will continue on with supporting your adult child after you are gone. You might need to appoint someone as guardian or executor of a trust. Consider utilizing agency support to help with some of this as well as life skills tutoring, home care, respite, etc.
-See Alyssa’s earlier post on creating a support team around your adult child. Having other people to count on will be good for everyone.
The purpose of these posts is to create a shift in thinking about disability. We encourage you all to see your child and their life through a new lens. Disability is not just a lack of something. Every human on earth has deficits, though most of us aren’t labeled, categorized and stashed away in an institution or shut in at their family home because of it.
As a society we need to focus on creating person-centered solutions for folks with disabilities in new and creative ways. They deserve the opportunity to have quality special education, employment options, the ability to live in their communities, and support services to learn the skills they need to live the lives they want to live. They deserve a say in the matter.
THANKS FOR READING! MORE TO COME!
Monday, April 1, 2013
Before we talk about adulthood, we wanted to brainstorm some important skills for getting and keeping a job. You will also begin to see some of the struggles that adults with disabilities have in today’s society.
Job Readiness Skills: By Alyssa
-Be a good listener
-Eating a healthy meal before a shift
-Be on time (getting up on time)
-Be well rested
-Respect the rules, no stealing
-Appropriate with conversation, don’t reveal too much about your personal life at work
Skills that help you get a job:
-Basic math & reading skills
-Filing, sorting, copying
-Good customer service
Challenges that our population faces (Alyssa & Tara):
-Getting around safely, public transit in smaller communities
-Quality special education
-Good support services
-Adequate agency support with a person centered approach
Wednesday, March 20, 2013
Still with us? We hope you are finding these posts helpful and thought provoking. Next up we have high school:
-This age range is all about getting prepared for adulthood, or ‘age-out’. After a child leaves the high school system (on or before their 22nd birthday) it can be a struggle to adjust in the adult system, as there are new rules to play by.
-Create a binder of important information. This should have a list of all medications (and what they are used for), emergency contact & important numbers & medical history. As soon as possible, help him/her learn the information (if possible) in the binder or know where to access it. By the time they reach age-out, hopefully they can be in charge of any updates in the binder and tell you what their disability & challenges are.
-If your adult child has health concerns, consider having them wear a MedicAlert product or keeping a card with important information regarding their disability in their wallet.
-Make emotional health and wellness a priority. This time in life is tough for everyone. Raging hormones, bullying and confidence issues run rampant amongst teens. Being different is not fun and kids are ruthless at this age.
-Be open to therapy or support groups (at any age).
-Encourage networking and build upon healthy relationships. Socialization and laughter is important.
-Think about next steps after your child ages out of the high school system; independent living options, employment options, day programming, developmental training, college, supported certificate programs (ex: www.nl.edu/pace/ ), developmental training & workshops, etc.
-Train your brain to think beyond what has been rammed down your throat for years and years regarding what your child can and can’t do. Stop assuming what their skill limits are. Set a goal early with your child about what THEY want for their life and work backwards. Focus on skill building.
-Encourage job readiness skills. Identify current skills, talents and interests. Work on fostering new skills that will be helpful on the job. Don’t be afraid to give your child responsibilities and hold them accountable for their actions. Enabling dependency and giving in will not help your child be a productive, self-reliant adult.