This Month, Bridget talks about The Rehabilitation Act of 1973.
I hope your fall is going
well, picking apples and seeing the leaves changing. It is always one of
my favorite times of the year. I hope you are enjoying the fall season as well.
Can you believe that the
year is going so fast! It seems like it is flying by for me.
I am back in school at
UIC and loving it. I met a few new students in my class. I get dropped
off at the Behavioral Science building and can get around the building by
myself. I also went to the activities fair on campus and had a blast. I signed
up for some groups and organizations and hope to get more involved in things on
campus.
I am also doing fine in
the LEND Program. I Love it! I have learned about how trauma impacts
people, especially in the disability community. Guest speakers presented who
were self-advocates and they shared their personal stories with us. I
learned a lot about Autism screening and how that is the first step in getting
a diagnosis. I understand more about what to look for when trying to make a
diagnosis especially when kids are really young. One of my friends
presented and he works for para-Olympics and is an amazing self- advocate and a
nice person.
I still work as a
standardized patient actor in the nursing simulation lab at UIC. I also work in
the lab helping to set up the rooms and help out the nursing students who are
there.
Today you are on a
special treat because I am going to tell you about an agency called HELING
HAND that is near me. I went there to visit with a team of people to
learn more about what they do. This is also part of the work I am doing
for LEND. Helping Hand a place that provides support and services for
people with disabilities. I saw two of my friends there who I have
not seen for a while. One is a friend from high school and another one
from the recreation program and a person I worked with when I was a person-
centered planning coach support person. I was excited to see them.
First we visited the day program where people do art, learn life skills, enjoy
and participate in music, participate in a wellness program where they learn
healthy living habits and participate in a fitness program. Some of the
participants work at jobs in the community, One person we met actually works
at the Chicago Lyric opera house and loves music. He was very excited to
tell us about how he gets there on the train and what he does as a job.
We also visited one of
their community homes where 8 people live. It was beautiful and the girls had a
whole side of the house to themselves and the males had the other side.
It had a huge kitchen and big table where they share meals. I was really
impressed with the laundry room because I love laundry.!!!
People are doing all
different things in their life and so that makes me think that it is a place
that tries to be person centered and that is one of my favorite things that I
always encourage people to do when making plans and designing lives.
Here is a little
information about Helping Hand.
Helping Hand is a nonprofit organization dedicated to improving
the lives of children and adults with developmental disabilities in Cook County
and greater Chicagoland communities. We offer a wide range of person-centered
programs and services that enhance the educational, therapeutic, residential,
and employment opportunities for those we serve. Our programs and services
include a school, progressive employment programs that promote inclusive
workplaces, pediatric therapies (occupational and speech/language), high school
transition services, Community Living (CILA), and specialized programs with
high team member-to-client ratios for seniors with disabilities.
Have a great month and I will be back soon.
Bridget Brown
Bridget’s Blog August 2023
Can you believe that we are
in mid-August I can’t believe that summer has gone so fast! I enjoyed this summer of 2023. I hope you all are having
a wonderful time and ready to go back to school or work or just ready for the
fall season.
I started back at UIC in the
CO-OP program. This is my second year
and I am excited to get started. I also started the LEND program and I am
learning so much about neurodiversity and more important things about
disabilities that will help me be a strong advocate.
Today I am going to tell you
a dear friend of mine her name is Marge Nykaza.
She just passed away and I am so sad right now because she made such a
huge difference in the world and in my life.
She started an amazing organization called Harmony, Hope and Healing 20 years ago.
She mixed her love of music,
her talent and her faith together and brought music to people in Chicago who
have experienced homelessness. She saved
many lives with music because people found their voice and that helped them
heal and go on to live full and wonderful lives. She brought music and hope into people’s hearts, souls, and minds. Marge brought
healing music to homeless and previously homeless people in the Chicago
area. She saved many lives over the years by just giving
marginalized people a chance to find their voice through music
She was a friend and a
wonderful director of this organization.
I remember what Marge has
giving to people from Chicago and how she
touched so many people and
left a great legacy. I hope the
organization will continue but I know she will be missed by many but her memory
lives on in the work she started.
She inspired me to share my
gifts and talents with the world. I want
to be more like her and help people find their voice so they can share their
gifts with the world. Many people she
worked with were people with disabilities who struggled in many ways. She was a
friend to all!
Below is some information about Marge.
Marge Nykaza was not just the founder of Harmony, Hope &
Healing; she was the heart and soul that infused our organization with
boundless compassion, unwavering dedication, and an unshakable belief in the
healing power of music. Her journey was a testament to resilience, empathy, and
the extraordinary capacity of one person's vision to transform countless lives.
Marge's belief in the transformative nature of music led her to
create a haven of hope and healing, where individuals facing vulnerability
could find solace and rebuild their lives through musical expression. Her
pioneering spirit introduced music therapy as a cornerstone of our programs,
making Harmony, Hope & Healing a leader in providing accessible and
impactful music therapy services. Through her guidance, our certified music
therapists have empowered individuals to find their voice, process emotions,
and enhance their well-being through the profound connection between music and
healing.
But Marge's impact reached far beyond the walls of our
organization. She was a fervent advocate for collaboration, forging
partnerships that extended our reach into schools, community centers,
healthcare facilities, shelters, and other vital community spaces. Through
these collaborations, her vision of healing through music reached those who
needed it most, amplifying her impact and spreading hope throughout Chicago.
Marge's legacy lives on within us. Her values of empathy,
collaboration, and resilience continue to be the guiding principles behind
everything we do. As we mourn the loss of an extraordinary visionary, we also
celebrate the indelible mark she left on Harmony, Hope & Healing. Every
note played, every program conducted, and every life transformed is a testament
to the profound impact of Marge's vision.
She is one of my leaders and
bought so many talented people into this world of music. She mad a difference
in the world. I will miss her so much
and hope that she is looking down on all of the people who were her friends.
Bridget Brown
Can
you believe that the summer has gone by so fast and that August is approaching
quickly? I am already planning the dates when I go back to school.
I
hope your summer has been busy and you are having fun. I hope
you are staying cool with this hottest month of the summer, and swimming to
cool off.
What
is your favorite part of the summer so far that you enjoyed?
Happy
33rd anniversary of the ADA!!
On July
26th, 1990, the Americans with Disabilities Act was signed into law by
President Bush. This act increased accessibility for people with disabilities
all across the country.
The
ADA is a radical civil rights law that prohibits discrimination against
individuals with disabilities in all areas of public life, including jobs,
schools, transportation, and all public and private places that are open to the
general public with disabilities Act (ADA)
I
am so blessed that I grew up with the ADA so that I could be included in school
and in my community. Most of us are where we are because of the ADA.
A
few months ago I was invited by a group called FUN FOR THE DISABLED to be in a
video at the Garfield Park Conservatory in Chicago. Vanessa
Harris is the director of Fun 4 the disabled. She
started this project of making videos of individuals with disabilities enjoying
all kinds of fun places in Chicago to see how they accommodate people with
disabilities and make things accessible. Garfield Park Conservatory is a
beautiful place with tons of interesting plants. I got a tour with a
guide who showed us amazing things. The video is just one of many videos
that will feature a person with a disability participating in some of Chicago's
amazing tourist events. I am not sure when it will all be out on
her website but it is worth checking it out to see all the different things she
has done.
The
Mission for FUN 4 THE DISABLED is...
Our mission is to create a
community by, for, and about disabled people, to help each other live our best
lives! Through our videos and articles, we uplift disabled voices and share
life-changing resources. Our videos check all the boxes! We make entertaining
pieces with accessible events and activities, educational pieces about disabled
experiences, and informational pieces about helpful products and organizations.
There’s something for everyone!
At Fun4theDisabled,
we believe that disabled people have much to contribute to society, and we
celebrate that! We create digital media that provides a platform for disabled
people to share their perspectives, learn about up-and-coming organizations and
movements in the disability community, raise awareness of different
disabilities, and most of all, celebrate disabled people in ways that are truly
F U N ! ! ! ! !
Happy SUMMER !!
Bridget
I hope you are all
having a great summer. I always love June because it kicks off the
summer. My favorite summer things are summing, fishing, camping, and sleeping at
a cabin.
Enjoying the warm
summer doing all the things you love to do.
We have a summer
camp and this week we are hosting a group from the AWESOME LIFE ACADEMY.
They are a fantastic group of people! Next week we are hosting a group
from ENVISION and I am also looking forward to being with all of them. If you
want to check out our camp video go to the website: www.normanbarrcamp.org.
You can see a really great video on there about camp. I have been at this
camp every summer since I was born and it is close to my heart. I work in the
candy store, doing dishes and the grounds. Great fun!
I am pretty excited
that I am enrolled in the LEND training program that starts in the fall.
Illinois LEND is LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED
DISABILITIES. I had to apply to get accepted so I am really
thrilled. They have a group of people who are self -advocates that they
include in this training program so I will let you know how it goes. If
you are interested in doing this go to their website and think about applying
next year.
Another great thing
that you might be interested in is that I received an amazing scholarship from
Ruby’s Rainbow. Ruby’s Rainbow gives college scholarships to people with Down
Syndrome. I have about 1 ½ years to continue my program at the University of
Illinois Chicago so this scholarship will help me reach my dreams. If you have
Down Syndrome and want to go to college, check out RUBY’S RAINBOW.
My friend Ashley
and I are the keynote speakers at the Illinois Transition Conference this
November. We are applying to present at the SPEAK UP SPEAK OUT conference
also. Check out these two events. Join us at SPEAK UP SPEAK
OUT! It is a lot of fun and you will get to meet a ton of self–advocates!!
I will be in touch
next month to talk about FUN FOR THE DISABLED!!
May you find lots
of fun things to do in July.
Dwell in the possibilities!
Bridget
June Blog: Part
2
Hi
There!
I
hope you are continuing to have a fantastic summer! Speaking of summer, it is a
great time to focus on new opportunities,
experiences, and goals you may have. This could be related to your
future career goals or perhaps be related to applying for college. It could
include exploring housing options once you are finished with school or starting
a new hobby that brings you fulfillment and joy! Check out our list of things
you can do this summer that will help set you up for success in the future!
Happy
Summer!
Megan
- Apply for a summer job. Many
businesses and local organizations are interested in hiring for the
summer! - Explore colleges online that
have programs similar to your interests. - Not sure what you want to do in
the future? Take a career interest and/or skill aptitude test!
https://www.monster.com/career-advice/article/best-free-career-assessment-tools
- Volunteer. Find organizations in
your community to get involved with! This can be a great way to build your
professional (and personal!) network. This website helps match volunteers
to opportunities in their areas
https://www.volunteermatch.org/
- Build your resume. Consider
taking online courses that provide certificates or tangible experiences in
your area of interest.
https://grow.google/certificates/#?modal_active=none
- Find a new hobby! There are
plenty of ways to get involved in new or old hobbies! This might include
joining an intramural league through your local Parks and Recreation
Department, taking art classes at a local art studio, or taking cooking
classes at a local restaurant. Summer is the perfect time to take time to
invest in yourself!
List of Different Hobbies to Try: https://theeverygirl.com/hobbies-at-home/
Seven Tools to Find People with Similar Interests:
https://www.makeuseof.com/tag/6-tools-find-awesome-people-similar-interests/
Family Matters:
June Blog Posts
June Blog: Part
1
Hi
Everyone and Happy Summer!
We
hope you are enjoying the start of your summer break or summer programming! We
know how busy the end of the school year can be and we congratulate each of you
on making it to the finish line! For those of you that graduated, we celebrate
your success and wish you the best in your next chapter! This week, we are
going to talk about and share tips for success when interviewing for a job.
Whether you are entering your career or looking for summer employment, we’ve
got you covered! Take a peek at some of these quick tips and tricks to landing
your next job!
Talk
soon!
Megan
- Be on time for your interview!
By arriving 10-15 minutes early for your interview, it shows your employer that you are
serious about the position, have a reliable means of transportation to get
to and from work, and that you are committed to the job!
- Bring a few copies of your
resume to hand to the interviewer or interviewing team. You want to
highlight your experience and success! Unsure of how to make a resume, consider using this resources!
https://novoresume.com/career-blog/how-to-write-a-resume-guide
https://www.abilitiestowork.ca/blog/resume-tips-for-a-person-with-a-disability
- Greet the interviewer with a
handshake and a smile. If you prefer not to shake hands due to COVID-19
precautions, consider providing a wave instead!
- Be prepared to talk about your
strengths and what qualifies you as a great candidate for this position!
- Bring questions. You will almost
always get asked if you have any questions about the position you are
applying for. You may ask questions regarding your role and responsibilities,
the work culture, or if there are opportunities for advancement. This is
the perfect opportunity to determine if this position is a good fit for
you!
Welcome! This is a wonderful time of the year because summer
is almost here!! I hope you are enjoying
your spring so far! It has gone by quickly.
I am excited that my classes are finished for the school year. Happy late Mother’s Day.
Right when I was done with school, I went to IRELAND with my
parents for two weeks. It was an
exciting adventure. I am Irish and many of
my family came over from Ireland during the potato famine. You may have
immigrants that came to America from Ireland or from another country because
they were looking for a safe place to live and America was that place. We went to the place where my ancestors left
Ireland for America on a boat. My great great grandmother had small pox on the
boat and they thought she was not going to live, but she did and that Is why I
am here!! I do my family tree and ancestry so I know a lot about where my
family is from and the history of all the people in my family. It is so much fun and very exciting to learn
so much about where my people came from.
I have great stuff to tell you about what we saw and what we
did in Ireland. Our Adventure started In
Dublin.
We took our time traveling all over Ireland to some of the
places that I never saw before: we went to my dad’s friends that he met when he
walked the Camino in Spain called “the way of Santiago”. They were very nice
and friendly people. I got to know them, and the best part is that they fed us
lots of yummy food. The lady who was
hosted us overnight was named Gillian Guest. She works for an agency for people
with disabilities in Ireland. She helps
people live in the community and her agency supports people all over the area.
Another lady named Heather teaches children with disabilities and has worked at
her school for a long time. It seems
like they have a vision for inclusion in Ireland and people are welcomed and
part of the community.
The Kennedy’s came from Ireland and we went to see the
family homestead. It was very
interesting. There is also an arboretum named after JFK right near where they
family home was located. I learned about
their family and their sister, named Rosemaire Kennedy, that had a disability
and how she made a difference in her family.
Her sister Jean and the Kennedy
family started Special Olympics and now Special Olympics is all over the
world. It actually started in Illinois
over 40 years ago. Now it is in many
countries and of course they have special Olympics for people with disabilities
in Ireland. I have participated in Special Olympics mainly in Gymnastics. I
have not done it for a few years but I loved it. I was also a global messenger for SO.
I went to the Kennedy memorial museum had lots of great information
and I got to know the Kennedy family.
Another fun event was a ukulele group that gets together in a bar every
Thursday called FUREY’S BAR. And I was
very excited to see that one of the Ukulele musicians had Down Syndrome. It made me want to play the Ukulele!
Ireland is beautiful and I was so happy to visit! Everyone
was kind and nice and said hello or waved!!
We don’t have that much in our country.
There are no guns in Ireland and that was also a very nice thing that I
liked. I really loved that People seem
to really care about each other and include people with disabilities.
Have a great June !!
Bridget Brown
 |
Hello & Happy Spring!
This week, we will be sharing information related to Supported Decision Making (SDM). If you missed our latest webinar on supported decision making and transition-age youth with extensive support needs, you can find the recording on the Family Matters website: https://www.fmptic.org/recordings/family-matters-recordings
Hi Everyone,
We hope this email finds you well and that you are enjoying a few days with warmer temps! This month, I will be sharing about different transition assessments that can be utilized to support transition-age youth. After a brief summary of popular assessments below, you can find websites that are free to teachers, students, and families with hundreds of transition assessments! For families, these could be shared with the school or completed at home. Once completed, findings can be shared with the IEP team prior to the annual meeting or at it! In two weeks, I will be sharing different considerations and opportunities to make when engaging with transition assessments and transition planning. We are always here for any questions you have or experiences you may want to share!
Talk soon!
Megan
Transition Planning Inventory- 3rd Edition (TPI-3)
Formal assessment tool
Used to measure skill knowledge across various domains of transition (e.g., work, academics, independent living). Those completing the assessment (e.g., teachers, families, students) must decide if they agree or disagree with the statements they read about the readiness of the student transitioning into various environments. Specific to work, results from the TPI can determine further training and support, as well as preferences and interests at work.
Focus
Preferences/Interests, Strengths, Support Needs / Performance
Mode
Questionnaire / Interview
Cost
$363.00
Transition Assessments and Goal Generator (TAGG)
Formal Assessment
The TAGG is an online scale that is completed with students, family, and various education professionals. Eight constructs are measured within the TAGG: strengths and limitations, disability awareness, persistence, interacting with others, goal setting and attainment, employment, student involvement in the IEP, and supports within the community. Results from the TAGG are norm-referenced. Specific to work, results from the TAGG identify a student’s strengths, needs, preferences, interests, and goals in terms of employment
Focus
Support Needs / Skill Performance
Mode
Rating Scale
Cost
$3.00
Functional Living Skills- Pathway to Independence (AFLS)
Formal Assessment
The AFLS is designed to assess functional, practical and essential daily living skills for everyday life. This assessment is not only designed to assess various aspects of the transition from school but supports practitioners or educators in monitoring progress throughout time of the various goals and objectives that can be created from this assessment. Example assessment protocols include basic living, home skills, community participation, school skills, independent living skills, and vocational skills.
Focus
Support Needs and Performance, Skill Knowledge, Strengths
Mode
Rating Scales
Cost
$.249.95
Picture Interest Career Survey (PICS), Third Edition
Formal Assessment
The PICS is a picture-based assessment that is given to students to measure their interests in employment activities and settings. Evaluators use 36 images and provide three of those pictures at a time, for students to choose from. Pictures resemble real people working. Due to the pictures selected by the student, the evaluator can create a vocational profile of what the student most prefers in terms of vocational activities or environments.
Focus
Preferences, Interest
Mode
Picture
Cost
$68.95
Free Resources!
Looking for more great transition assessments and tools? Check out the links below!
University of Illinois Urbana-Champaign
Illinois Center for Transition and Work
Transition Tennessee: Resources/Assessments (Free to Create an Account)
Transition Improvement Grant (TIG): Age Appropriate Transition Assessments and Resources
Welcome to February! I hope you had an enjoyable month.
I am excited to tell you about a coworker of
mine. She will share her love for her daughter and how her life is
precious. She will tell us about being a mom. And that is why I decided to interview her this
month because it is the month of Valentine’s Day.
I work with a beautiful young woman named
Lynn. She is a mom of a beautiful daughter who is on the Autism spectrum and
also is hard of hearing. Lynn is hard of hearing so she also has a disability
herself
My
friend Lynn reminds me that love has the power of gratitude.
.
Below I will share my interview with Lynn.
Bridget:
Tell me about your life.
Lynn:
My name
is Lynn Ortiz, and I am currently the Simulation Lab Coordinator at the UIC
College of Nursing. I’ve been a nurse for over 20 years, but I left the
hospital setting a little over 5 years ago because I wanted to be in a teaching
environment. I love what I do as Simulation Lab Coordinator here – I help
faculty build, develop, and facilitate simulations that help nursing students
mimic the real-life hospital setting, taking care of patients that they would
see during their clinical rotations.
I am married with two children, ages 13 and 17. Both of my
children go to school in Oak Park, where we live. My husband, Rey, is a
certified registered nurse anesthetist and works for UI Health. My
extended family are all part of the UIC family, and I am close (literally and
figuratively) with my brother and sister, who both live less than a mile away
from me also in Oak Park.
In our spare time, my husband and I both like to work out and
surf. My husband grew up in Hawaii, and it is both our dream and plan to
retire (and surf) there. I like to joke that my youngest is our
“souvenir” from Hawaii – I was pregnant with her when I lived in Hawaii over 10
years ago, and she was born in Honolulu.
Bridget:
How is it being a
mom to a child who is on the autism spectrum and is also hard of hearing?
Lynn:
Being a mom of an autistic and hard of hearing child can be
challenging, but it does have its rewards. As much as possible, I try to
help my eldest with self-advocacy, which I know can be difficult for a child on
the spectrum. Learning to be organized and speak up for yourself is
difficult for Tori (my child with autism and hard of hearing). I have
noticed a drastic improvement in academic performance, which I think is
important. Tori now takes initiative to be more organized.
Understanding content and learning information has never been an issue or
difficult – Tori was always able to speak and perform on an intellectual level
– it was just a matter of organizing thoughts and learning time management,
which I’ve helped Tori tremendously to master.
The hard of hearing part is something that I can relate to, because
I myself am hard of hearing. Teaching both my children (they are both
hard of hearing) how to put on their hearing aids and to know what resources at
school are available to them was such a key component to aiding their
learning. It’s hard when you’re a teenager because you’re always looked
at or judged by your peers. But I made both kids understand not to be so
wrapped up in what others think of them – it’s important to feel included, and
the only way to feel included is to utilize the resources you have. I
think that information was so valuable to my eldest.
Bridget:
How does this affect
your family? What kinds of accommodations does your daughter have that help her
be successful in school?
Lynn:
I think my husband is as patient as he can be living with 3 persons
who are hard of hearing. I love both my children so very much, and I
think we both just want our children to succeed. I look at my eldest as
someone who has so much potential; Tori is intelligent, sweet, and extremely
kind.
Tori uses an FM system at school to help with lecture. I
believe the FM system pairs with the hearing aids by amplifying sound, but they
don’t use the FM system during things such as sports or if there is too much
noise.
I also signed up Tori for a support group called AANE (Asperger
Autism Network). They have open support groups every second Saturday of
every month, and Tori signs up whenever they feel there is a need. It’s
great because Tori was able to make a lot of friends through the support
group.
Bridget: What will you say to the people who are reading this blog and what
advice would you like to give to parents?
Lynn:
I think the key thing is to be encouraging and supportive.
Sometimes as parents, it’s difficult to let your child take the lead because we
always want what is best for our children. But as our children slowly
start growing into adults (like mine is about to become), it’s important to let
them figure things out themselves, but teach them how to self-advocate the best
way. Before we let our kids take the lead, we as parents really have to
listen. What is it that they want in life? How can we get them to
where they need and want to be? What resources are available? In
our own little way, we as parents become little researchers that try to find
whatever help we can. It’s important to teach our kids that it’s ok to
need help. It’s ok to not know all the answers. Even as adults and
parents, *WE* don’t always have the answers. So, we have to learn to
share that journey together.
Thank you,
Bridget’s Blog for Jan 2023 Sarah Bak
Sarah Bak and
Shepherds College
Hi everyone, I hope you are all doing well
after the holidays have gone by. I hope you had a New Year’s blast with your family
and friends? Now we are in 2023 and a brand-new year has begun.
I had a party
with my two friends, Ashley and Rachel, who I wrote about in my last
blog. They had a party and invited a lot of people and we all had a
fantastic time. I think this is one of the first times I have been invited to a
New Year's Party. We had a blast.
Let me tell you about a friend of mine
named Sarah Bak, I know Sarah because we acted together in the Ups for Downs
theater program with EDGE of Orion. Sarah is a young woman who captures love
through her heart and smile.
Sarah graduated
from Glenbard West high school in Glen Ellyn. She was involved in the Dance
team and a cheerleader. She did a lot of really fun activities in high
school. One of her favorite classes was Horticulture.
Sarah has been
in many plays and is a wonderful actress. She was a very funny maid in Mary
Poppins, and she was a really scary Ursula in the Little Mermaid. Through the
EDGE of ORION she has participated in many different plays. We had the chance
to act together in a lot of plays.
Sarah is one of
the self-Advocate from the NADS group SAIA. And a very strong and active person.
This is Sarah’s
second year as a college student at Shepherd College in Union Grove near
Kenosha. She loves going to college and had lots to tell me about
her experience. She is living with 6 roommates. The three roommates she mentioned
are Amber, Margie, and Maria. They live in a townhouse that is at
the school. She has learned to be very independent. She learns money
skills and daily living activities and professional development that will lead
to employment.
When she started college, she was a little nervous and afraid to be far away
from home. She got help to deal with the transition and it took a few
weeks but soon she was fine.
She and her
roommates share their meals together. She is responsible for a meal once a
week. She loves to cook and enjoys other people’s cooking as well.
When she makes meals in her town house lasagna soup and tortilla soup are her
Signature items. Making meals helps her learn to be independently because
she goes, plans her menu, and shops for all the items.
In the summer
she loves helping with the garden and growing plants and veggies. The school has
two gardens and a greenhouse and a farm stand.
She is in Choir
& drama club.
Her social life
is very important. They do parties like Halloween, holidays &
thanksgiving. They go to movies, coffee shops, carnivals, festivals, and holiday events.
Part of the life
skills she has learned is how to be a self-advocate and to use her voice
and speak up for herself. She thinks that is a really good skill.
Her self-determination has grown since she started college. She asked others if
she needs help
Shepherds
College has a strong faith base. Sarah, is growing her spiritual relationships
by going to SouthBrook church in the area. She has a group on spiritual
formation and goes to bible class as well. She Learns about the word of the
bible while she attends Church on Sundays.
After her 3
years at Shepherds College, her goal is to live in Orlando Florida and to work
for Disney and grow plants in a green house. She loves Disney world and the
magic kingdom is her favorite place because her cousin works there. Her
favorite flower is daffodils.
Her BIG dream is
to own her own floral shop in Florida.
Sarah is having
a great time in college and loves being more independent. She is a pretty
amazing person and I loved learning more about her life
Sarah’s ideas
about being successful are:
· Never give up!
· Keep on going on,
· Try hard.
· Know what your purpose is
· Get support from others when you need it and from your advisors
· Never give up on yourself and work hard
· Speak up for yourself.
· Be organized and pay attention
· Even if you are nervous, remember we are all nervous when we
start new experiences. But keep going and you will be okay
Have a great
start to the new year!
Bridget
Hi There!
This week, we will wrap up our final blog on tools and resources to support college students with disabilities. A phenomenal resource I would like to share with you is titled, “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults.” It was developed by the Autistic Self Advocacy Network and includes topics such as accommodations, housing, health and safety, advocacy, and social life. Here is a short excerpt from the Forward of the book, written by Ari Ne’eman.
“In addition, this book is focused on more than just succeeding in the classroom. While classes and homework are important parts of college, no one tries to tell non-disabled students that this is the totality of their college experience. Clubs, social activities, dormitory life, parties, sex and relationships and countless other things should take up at least as much of your waking hours as schoolwork does. For those of you who will be living on campus, and even for many of you who will not be, college isn’t just a place to go to take courses—it is a way of life. We’d be doing you a disservice if we didn’t talk about the parts of the college experience that happen outside of the classroom.”
We hope this resource may be of benefit to you, a loved one, a neighbor, a student, or a colleague!
Warmly,
Megan
Hello and Happy New Year!
I hope the beginning of 2023 is off to a wonderful start for you and your family! This week, we are going to continue our focus on post-secondary education. This blog is an excerpt from the Family Matters Winter 2022 Newsletter regarding accommodations in college and the RISE Act. This article was written by the Family Matters Executive Director, Debbie Einhorn, M.Ed. We hope you find it helpful!
Stay warm!
Megan
Preparing for Transition to College
When a student with a disability is preparing to attend college it is important for them to understand their rights. The Office of Civil Rights (OCR) strongly encourages students with disabilities to know their rights and responsibilities and the responsibilities of institutions of postsecondary education under Section 504 and the Americans with Disabilities Act. Institutions of postsecondary education have no legal obligations under IDEA. IDEA requirements apply to state education agencies, school districts and other public agencies that serve IDEA-eligible children.
Disability supports and services in college differ significantly from those a student may receive during elementary and secondary school. During elementary and secondary school a student with an IEP may receive accommodations and modifications. Once a student graduates from high school and receives their diploma the IEP expires, meaning the IEP does not follow a student to college. Colleges are required to provide reasonable accommodations for students with disabilities, but are not necessarily required to provide the same type of services that were in the high school IEP.
Some common college accommodations may include extended time, use of a calculator, copies of notes from a classmate, use of audiobooks, or use of speech to text programs.
It is important for students to understand what supports and services are part of their IEP during high school. Students also should understand the difference between an accommodation and a modification. An accommodation allows a student to complete the same assignments as other students, but permits a change in the timing, formatting, setting, scheduling, response or presentation. An accommodation does not alter what the test or assignment measures. A modification adjusts the expectations for an assignment or a test. It permits a change in what a test or assignment measures. Examples include: a) a child is permitted to complete only part of a standard; b) a child is given an alternate assignment at a different level instead of the standard assignment.
Families and students should maintain copies of high school records. These records are important when requesting accommodations at the college level and obtaining other disability related adult services. A Summary of Performance (SOP) must be completed during the final year of a student’s high school education. The SOP along with additional documentation may be necessary as the student applies to a college or university. To learn more about the contents of the Summary of Performance, contact Family Matters.
For several years, advocates have been pushing a bill called the Respond, Innovate, Support and Empower (RISE) Act. The RISE Act would make the transition to college a little smoother by requiring colleges and universities to accept students’ individualized education programs (IEPs) and evaluations from school districts as proof of the need for accommodations and supports. This would eliminate the need for students to again undergo expensive evaluations just to provide evidence to the post-secondary schools that they have a disability and need certain supports in order to participate in college coursework. Students who have disabilities such as cognitive impairments, dyslexia, dysgraphia, auditory processing disorders, autism, and other learning disabilities, will still have those disabilities when entering college and there should be no need to have to go through the time-consuming process of re-evaluations to show that they still have those learning differences.
Although the Individuals with Disabilities Act (IDEA) which requires IEPs for students with disabilities during primary and secondary school, no longer applies after high school graduation, there are other federal disability rights laws that entitle adults with disabilities to reasonable accommodations in education and employment. Those laws include the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.
Recently released federal data shows that among college students who were ever diagnosed with a disability, just 13% informed their college of their disability status. Some undergraduate students don’t disclose their learning disabilities to their colleges and universities because they never learned to advocate for themselves while in high school, or may be unaware of the services that could be available to them in postsecondary schools, or because they fear disclosing a disability might count against them.
In addition to requiring colleges to accept students’ primary and secondary school records as proof of disability, the RISE Act would create a $10 million technical-support center for college faculty to learn more about the needs of students with disabilities, provide a centralized source of information about accommodations for students with disabilities and their families, and require colleges and universities to report more data on students with disabilities.
After years of advocacy efforts, this year for the first time, the RISE Act passed the U.S. House of Representatives, the furthest it has advanced in the legislative process. There is no vote yet scheduled in the U.S. Senate. If you would like to see this legislation passed by both chambers and sent to the President to be signed into law, you can contact your state senators to encourage their support of the RISE Act.
If you need help finding the contact information for your senator, visit this website: https://www.congress.gov/ members/find-your-member
Helpful Resource: https://www2.ed.gov/about/offices/list/ocr/letters/parent-20070316.html
Bridget Brown’s Blog Dec. 2022
I hope you all had a fantastic Thanksgiving
and are looking forward to celebrating the winter holidays. This is always a fun time of year but
definitely cold. Keep warm and safe!
I just finished my classes at UIC and it is
good to take a break.
I start up in early January and I will be
on the east and west side of campus so it might take me a little time to learn
how to get around.
I am so excited to write to you about two
great friends of mine. Ashley and Rachel. You are in for a treat to learn more
about them because they are both incredible people. I have known these women
for most of my life. Both of them are wonderful self-advocates and they are
celebrating the 1-year anniversary of living together.
Rachel ~
I met
Rachel when I was two weeks old and we have been friends ever since.
Rachel
loves to have fun and plan activities with friends.
She
has 3 great jobs. She has worked at Lou Malanites for 10 years. She recently
started working at Gia Mia.
She
also works at the same school she attended when she was younger. She helps the 2nd-grade
children and reads to them.
She love going to the awesome life academy when she is not working. Some of her
superpowers are:
· she remembers how to do
jobs. She starts out with a list of activities she needs to do but
quickly just remembers the things she must do and doesn’t need the list.
· She speaks up for
herself.
· Rachel taught Ashley how
to be patient and Ashley taught Rachel how to speak up.
· she uses her phone to
learn how to spell something and to look things up. She speaks into the phone and it writes a text
for her.
· Rachel is a great party planner
· and she is learning how
to be self-advocate.
Ashley
~
Ashley
has two brothers who are married and a nephew and niece. One of her brothers lives
in Colorado and has a pet pig niece named Velma.
She is
going to Colorado and plans to ski with her brother and sister-in-law on
Christmas day!
Ashley
is an actress and the movie she was in, Gem Seeker, was just at the Skokie
movie theater. She walked the red
carpet, and it was fabulous. A limo picked the actors up and took them to the
theater. Pretty fancy!!
She
has been doing acting for many years with the Ups for Downs theater group. She was the lion in The Wizard of Oz.
Ashley
is a hard worker and has had many jobs. She worked at Jewel, and at the Kane
County Cougar games. She loved working at a nursery school and the kids loved
her. Now she works at Burlington Coat factory and really enjoys it but her feet
get sore after a long day of work.
Ashley
graduated from a two-year program called Career Skills Institute at Harper
College.
Ashley’s
super powers are:
· Ashley is successful
because she is super organized. She has a calendar on her phone and
computer. She is fantastic with
technology
· She is resourceful at finding answers she
doesn't know
· She is super quick at
thinking things out
· Ashley has a good heart
and gives things away
· She is incredibly helpful
and very determined!
· She has a strong faith
life and is very grateful
· She is a strong self-advocate
· Ash loves to laugh and
have fun with her friends.
· And she is good at
brainstorming and thinking of new ideas
and problem solving.
Ashley
and Rachel are room mates
they
have been living together for one year now.
They
have a fabulous home. Some of the things they love to do together are:
· They watch full house
together
· They cook together
· Both of them take care of
their home
· They really like hanging
out together
· They love to have people
over to their place and have parties
· They like to have their
own rooms and have community gathering space as well.
· They really enjoy doing
crafts, coloring, making lists and working on their healthy lifestyle by
finding great recipes.
Ashley
and Rachel
have
been working on a healthy living lifestyle and both have lost weight and are
feeling healthy!
They
cook together and look for recipes that are healthy. They do a lot of swapping
out bad food for good food.
They
even started a project called “Just A Dollop”
They
are working on a recipe book and a website. They have you tube video and are
working on teaching other people how to cook
health food and enjoy cooking.
Their
first mini-Recipe book should be done in the spring.
They
have a logo and are thinking about making t-shirts.
Ashely
has a few opportunities to talk about her “Just A
Dollop” project coming up in 2023. More to come on how to connect with Ashley
and Rachel and learn more about Just a Dollop!
I am so excited about this and so happy to
learn a lot from Rachel and Ashley.
I hope you enjoy this time of year! Happy New Years. 2023 is heading here fast!
Have a great holiday!
Bridget Brown
Hi There!
We hope your holiday season is off to a great start and this blog finds you joyful and well! In case you missed it, Bridget recently blogged about how her life has been going at UIC and shared an interview recently conducted with Ryan Burke, an incredible self-advocate who works in schools and has a passion for musicals and enjoying time with loved ones. Make sure to check it out! This time, we will continue exploring post-secondary experiences and opportunities!
Stay warm! Later this month, we will be back with information on how to access accommodations in college and where to go on campus if you are needing support!
Warmly,
Megan
Let’s dive back into pursuing post-secondary education! Today I will be sharing about Think College! Think College provides resources, technical assistance and training related to college options for students with intellectual disability, and manages the only national listing of college programs for students with intellectual disability in the United States. They are a national technical assistance, research, and evaluation center dedicated to developing, expanding, and improving higher education options for students with intellectual disability. With a commitment to equity and excellence, Think College supports evidence-based and student-centered research and practice by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.
Here are some exciting and supportive resources if you or someone you know is interested in attending college!
Searching for Colleges? The Think College Search features information on 314 postsecondary education programs for students with intellectual disability. There are 16 here in Illinois!! You can find them HERE.
Are you wanting to share more about Think College with parents, friends, family, or colleagues? You can watch a short 25-minute film produced by Think College that explores the growing movement to include students with intellectual disability in higher education. Click here to access the short film, Rethinking College.
Looking for more information? Check out their FAQ HERE!
Unsure of what questions to ask when researching programs or visiting colleges? HERE is a list of questions you can ask of college programs.
Bridget’s blog for November 2022.
Interview for Ryan Burke
I hope everyone had a great thanksgiving celebration
with family and friends. Thanksgiving
is a wonderful time of the year because it reminds all of us to be thankful for
everything in our life. I had a great
time with my family making pasta. It is an odd way to celebrate Thanksgiving
but everyone, even the little kids, can get involved in making the pasta together
and making a huge mess. It has become a
family tradition. Maybe we will have turkey at Christmas time.
I am finishing up my fall classes at UIC. It has been
challenging and lots of work but I learned a lot. I hope to get good grades. I
will continue working at the Nursing School next semester and I will take a
course on radical Inclusion and my internship. This time I will be in class on
campus and so that should be very exciting. I think it will be better for me to
take classes in person instead of online. I have some great support teachers
who do everything they can to help me succeed and I am very grateful for them.
I also have a study group and all the accommodations that they have
available.
This month I got the chance to interview my friend
Ryan. He has a smile that brightens up
the room when he walks in. He is one of a kind! We were on the board together
for the National Association for Down Syndrome (NADS is the oldest organization
for people with Down Syndrome.)
He is 28 years old and comes from a big family. He is
a great man. He lives a full and
productive life. He has Down Syndrome, just like me, and we belong to the same
special recreation association.
Ryan has an amazing life. He is super friendly and
loves people. He inspires people especially his family. One of his sisters is a
special education professor. Another sister is a Speech Therapist and he has a
brother who is a child psychologist. All
of them were inspired by Ryan. He loves his family and is a proud Uncle to his
sister Meagan’s kid.
I was so excited to learn that Ryan attended Notre
Dame High School in Niles and was a Burke Scholar. This is amazing because it
is an INCLUSIVE high school education program of faith, scholarship and service
for students with special needs.
The Burke Scholars
Program is the first of its kind in the Archdiocese of Chicago and one of a
small selection of such programs in the United States. Notre Dame College Prep
believes that all students should have the opportunity to participate in a
Catholic high school experience regardless of ability or disability.
Now, Ryan works at Notre Dame High School. He loves it
because he can see all his past teachers, he is very familiar with the school
and has great memories. He also mentioned that they have really great food!
Ryan also works at an elementary school called
Gower. He loves working there and is very committed to his job. People love
working with him because he is reliable and super friendly. He is a perfect
employee! He is funny and it is fun to hang out with him. His work at Gower is
great because he gets supports from The Working Together Group.
Ryan also has lots of fun in his social life. He loves
going to movies with his brothers. He loves musicals and doing activities with
Seaspar. He is a powerlifter with Special Olympics and often goes to the
competition. He also likes going to dances with friends. He loves bowling and
swimming.
He was in a musical called Fiddler on the Roof. He
loves musicals like, Into the Woods, Aladdin, Frozen, and Beauty and the Beast.
.
Here are some of the things that help Ryan succeed:
.Ryan is successful because ~
·
he has lots of great skills and a good attitude
·
He knows how to take public transportation
·
He never gives up
·
He has a great job coach when needed
·
He likes to have a schedule
·
He works hard and has a strong work ethic
·
When things are new or difficult, he sticks with it
and keeps trying
·
He is very dedicated and doesn’t like to take any days
off
·
He listens when people give him directions
·
Likes seeing people everyday
·
He is very friendly
·
And he likes to try new things
·
He has lots of support in his life
The most important thing is that Ryan has lots of
friends and family and enjoys every minute of his life.
It was so much fun to spend time with Ryan and learn more about his amazing
life! One more incredible self-advocate
living his best life!
I hope you had a lovely Thanksgiving and/or fall holiday break!! This November and December, we are going to highlight Post-Secondary Education and related experiences. We will kick-off with a re-share of our very own Bridget Brown’s experience at the University of Illinois at Chicago (UIC) in a new inclusive program titled, the Co-Op program, under the Disability Studies College. If you loved any of the stories, feel free to comment on this post and share below. If you or someone you know is doing anything related to self-advocacy or wants to share their story, please let us know! We are also sharing our blogs on our Twitter @FamilyMattersIL- so your story could also be shared there! Now sit back, grab a cup of coffee or tea, and learn more about Bridget’s college experience!
Warmly,
Megan
Hello again
I hope you are having a fun Fall so far. Wow, can’t believe that 2022 is flying by. I love fall!
My last blog was an interview with my friends Kelly & Karen Neville. I learned so much about their life, and their business “Special Sparkle”. I hope you enjoyed reading about them.
Today, I thought I would give you an update about my new college experience. Maybe some of you are thinking about a post- secondary college experience or some of you might already be in college. I am excited that some of you might be considering college for your future.
I went to College of DuPage for a number of years. That is my local community college. They have lots of exciting classes there but I was hoping for something more inclusive. I also did a summer college program during Covid at John Wood Community College online. That was fun!
So you might be wondering what is my college experience like now. I currently am a student at UIC (University of Illinois CHICAGO). I am in a new inclusive program called the CO-OP program, under the Disability Studies College. This program just started up and it is very exciting.
I also have an internship in the School of Nursing at UIC.
I started last Spring and my first class was called Radical Inclusion. This was a perfect class for me because I am an inclusion advocate and it gave me information about the history of inclusion so I know how to be a better advocate for people with disabilities. It was very interesting.
I also took a class called Career building. This was to help me prepare to get an internship and employment. I learned how to make a cover page and learned the difference between formal vs informal questions. I also learned how to get a paid internship. Because of this class I now have a paid internship at the nursing simulation lab in the nursing department at UIC.
During that time, I even made friends because I worked with a team of my peers who were also in the CO-OP program. Being part of this class I learned the importance of being professional in my relationships.
Now this Fall I am studying Disability in American film. I am learning how people with disabilities are portrayed in movies and how that describes their life to people. That can be positive or negative. I am learning that it is important to hear real voices of people with disabilities so they can share their stories about their lives.
I love my internship at the Nursing department. I have an internship working in the simulation lab. I am also an actress and I work as a patient with a disability so the students can learn about how to work with individuals with disabilities in a health care setting. It is very exciting and a new program for the nursing department. I love it!
For me college life is wonderful! Being part of a college and being included in general education classes is great. I love working in a team with other students who are also in the program and some who are general college students. I am looking forward to getting to know more students and professionals. I just love being a student at UIC and working in the nursing department.
Life as a student is different but I am learning the ropes of being safe and using self-determination by speaking up for myself and for helping others out. I also learned that classmates are very kind, respectful and that I can trust them.
I hope you enjoyed my thoughts about my college experience. If you are thinking about college, I encourage you to check it out and see what is available in your area and throughout the country. There are lots of great programs! I am available to share my experience with you so if you are interested you can contact me and we can talk more about my experience.
Have a great October (November!) and dwell in the possibilities!!
Bridget Brown
Welcome to October! It seems like this year went so fast. How was your fall going so far? I have been to Wisconsin a few times this month to see the leaves and do some camping.
I am working hard at my college classes and things at college are fantastic. The class I am taking now is Disability and Film. It is very interesting but hard. I am learning how films and movies show people with disabilities in both positive and negative ways. I have a letter of accommodations now so I can receive the accommodations and support I need to succeed in my classes.
I am now working two times a week at the UIC Nursing school and I am also working as an actor at the school as well. It is great! I am now picking out my classes for next semester. I am finally getting comfortable down at the University and it feels great to get dropped off and walk a short way to my work. I also just met a mentor friend who is willing to help me learn about some of the fun things I can do at college and I don’t feel so alone.
Let me tell you about a dear friend of mine, Moira Morgan. I have known her for a long time and today I interviewed her to find out more about her and what she has accomplished in her life so I can share her story with you.
Moira is a strong self-advocate who has many gifts. She describes her life as AMAZING!
The first thing you notice about Moira is that she is a very positive person and very kindhearted. She is also an incredible person who captures your attention with her loving smile that brightens every room she is in. She has two sisters and a brother. She is also an aunt of 4 nieces and nephews.
She went to Naperville North High School and was included in school. She was involved in activities at high school that she enjoyed very much.
Now, Moira is very proud to work as a customer service courtesy clerk at Mariano’s grocery store. She likes to visit with her friends when she is working and her favorite part of work is getting a drink at Starbucks.
During her transition years after Highschool she worked at a plant nursery called WE GO DREAMS & at Goodwill.
She is also a self-advocate public speaker and loves to talk to people about her life.
One of her favorite things to do is spend time with friends. She is in a bunco group, a book club, and she does many activities with her special recreation group. She hangs out with friends on the weekends.
Moira travels a lot and has been to Wisconsin, Missouri, Italy, London England, Paris and Spain with her family. Moira attends her local church called St. Peter and Paul and was in the youth group there when she was younger.
She was involved with special Olympics and went to a summer camp often when she was growing up with her sisters. Summer camp was wonderful because she loves swimming. She was also involved with Best buddies at IL Benediction.
Now she takes classes at College of DuPage. She wants to take music and ballroom dancing and is looking for more educational classes she can take. A few years ago, I took a culinary class with her at College of DuPage.
I asked her about some of her success strategies. She said she said she is successful when she is super friendly to people and when she is organized. She is pretty good with organizational skills.
She thinks it is important to let people know when she needs help and when she doesn’t need help.
She thinks it is important to get rest because she is at her best when she is well rested.
When she is at work she listens to her boss and is respectful to others. She is a hard worker and contributes a lot at her work.
Moira has a wonderful life filled with family, friends, work and activities. She said she is always busy!
Thank you for reading my blog.
Have a great THANKSGIVING DAY and I will connect with you soon. Be Grateful for all the wonderful things in the world and for friends like Moira.
Bridget Brown
Hi Family Matters Friends!
I hope you are enjoying the fall season with cooler temperatures, trips to the orchard, and a spooky movie or two! This week, I am going to wrap up our October series on “Stories of Entrepreneurship.” If you loved any of the stories, feel free to comment on this post and share below. If you or someone you know is doing anything related to self-advocacy or wants to share their story, please let us know! We are also sharing our blogs on our Twitter @FamilyMattersIL- so your story could also be shared there! In November, I will be sharing about post-secondary education opportunities- so stay tuned! Now sit back, grab a cup of hot cider, and hear more about successful entrepreneurs!
Warmly,
Megan
Bridget Brown
Hello again
I hope you are having a fun Fall so far. Wow, can’t believe
that 2022 is flying by.
I love fall!
My last blog was an interview with my friends Kelly &
Karen Neville. I learned so much about their life, and their business “Special
Sparkle”. I hope you enjoyed reading
about them.
Today, I thought I would give you an update about my new
college experience. Maybe some of you are thinking about a post- secondary
college experience or some of you might already be in college. I am excited that some of you might be
considering college for your future.
I went to College of DuPage for a number of years. That is
my local community college. They have
lots of exciting classes there but I was hoping for something more inclusive. I also did a summer college program during
Covid at John Wood Community College online.
That was fun!
So you might be
wondering what is my college experience like now. I
currently am a student at UIC (University of Illinois CHICAGO). I am in a new inclusive
program called the CO-OP program, under the Disability Studies College. This program just started up and it is very
exciting.
I also have an internship in the School of Nursing at UIC.
I started last Spring and my first class was called Radical Inclusion. This was a perfect class for me because I am
an inclusion advocate and it gave me information about the history of inclusion
so I know how to be a better advocate for people with disabilities. It was very
interesting.
I also took a class
called Career building. This was to help
me prepare to get an internship and employment.
I learned how to make a cover page and learned the difference between
formal vs informal questions. I also learned how to get a paid internship.
Because of this class I now have a paid internship at the nursing simulation
lab in the nursing department at UIC.
During that time, I even made friends because I worked with
a team of my peers who were also in the CO-OP program. Being part of this class
I learned the importance of being professional in my relationships.
Now this Fall I am studying Disability in American film. I am
learning how people with disabilities are portrayed in movies and how that describes
their life to people. That can be positive or negative. I am learning that it is important to hear
real voices of people with disabilities so they can share their stories about
their lives.
I love my internship at the Nursing department. I have an internship working in the
simulation lab. I am also an actress and I work as a patient with a disability
so the students can learn about how to work with individuals with disabilities
in a health care setting. It is very
exciting and a new program for the nursing department. I love it!
For me college life is wonderful! Being
part of a college and being included in general education classes is
great. I love working in a team with
other students who are also in the program and some who are general college
students. I am looking forward to getting
to know more students and professionals.
I just love being a student at UIC and working in the nursing department.
Life as a student is different but I am learning the ropes
of being safe and using self-determination by speaking up for myself and for
helping others out. I also learned that classmates are very kind, respectful
and that I can trust them.
I hope you enjoyed my thoughts about my college
experience. If you are thinking about
college, I encourage you to check it out and see what is available in your area
and throughout the country. There are
lots of great programs! I am available
to share my experience with you so if you are interested you can contact me and
we can talk more about my experience.
Have a great October and dwell in the possibilities!!
Bridget Brown
How is your summer going? I hope you are
doing fine and that you had a good summer.
I am back at home from my summer vacation.
This summer I had fun working at a camp in the candy and Ice cream store. I
also went to Traverse City in Michigan and to a YMCA camp in Colorado and
stayed in a YURT. I am excited to start my classes at the CO-OP program at
UIC.
Today I had the chance to interview my good
friend Kelly Neville. She is an amazing self-advocate who is turning 31 in a
few weeks. She was in her sister’s wedding
recently and is going to a lot of her friend’s weddings. She loves getting
dressed up, getting her nails done and of course, loves anything that sparkles.
She loves high fashion, shoes, puppies, baking cookies and following color
trends.
Kelly has a bunco group and paints in her
free time. She is very creative and one of her favorite things to do is
to make Diamond Paintings. She is a true artist!
Kelly does many amazing things but her
superpower is making jewelry and having her own business called Special
Sparkle. She is very creative and makes beautiful heartfelt jewelry
with love and passion. Kelly likes to say her mother, Karen is special
and she is sparkle. She has a studio in
her home and makes jewelry every day. She loves working, having her own
business, making jewelry and selling it. She works very hard and is super
focused. Her wonderful business has grown so much and she is very busy right
now preparing for Christmas. She sells her jewelry at craft fairs, The Hope
Gallery in Indiana, BEST shop in Virginia and Artful 21 in Ohio. She donates
some of her jewelry to Catholic Charities and organizations that work with
folks with disabilities. Owning her own business gives her great
joy and makes her happy. She has dedicated her life to making a
difference in this world, sharing her gifts with others, inspiring other
self-advocates to have their own business and follow their dreams.
She is a successful public speaker and is proud that
she was the graduation speaker at the Ray Graham Training Center High
School.
I asked Kelly what are some things that make
her successful and she said:
·
She works hard and never quits when things are difficult.
·
She works every day.
·
She is focused and dedicated.
·
She is organized.
·
She plans ahead.
·
She has a great partner.
·
She followed her dreams.
·
She asks a lot of questions.
·
She always looks for people who encourage others.
·
She is positive and loves her job.
·
She knows that she can do it !!
·
She is always learning new things.
·
She sets things up for success.
Her motto is: Work hard and play
later !
She would like for all self-advocates to have
their dreams come true! Kelly
always encourages
others to follow their dreams!!
You can learn more about Kelly and Special
Sparkle by checking out her website:
specialsparkle.com You can see her
jewelry and all the names she gave them and you can put an order in if you find
something you love. Kelly is featured in the book Looking Up: The Truth About Down
Syndrome by Flinkow, Brianna Book
Bridget Brown
Hello again. I hope your
summer has been a blast. I hope you are doing well and having fun.
Today I talked to one of my good friends Aubrie Westmaas, a bright
young woman who gives great smiles and has had an extraordinarily life.
Aubrie is an amazing self -advocate who is successful because she always
expects extraordinary things in life. She
is a big dreamer and advocate. She has a lot of spunk!
She grew up in Pittsfield Illinois and was included all the way
through high school. For her transition years she went to the Illinois
School for the Visually Impaired. When she graduated, she went to Helen Keller National Center for Deaf
Blind Youths & Adults in Long Island New York.
She loved NEW YORK! Aubrie
loves ALL kinds of theater and her big dream in life is to be a Broadway actor,
so living in NEW YORK was a dream come true for her.
She just moved into her own apartment in Quincy, Illinois and is
looking forward to getting settled and meeting new people. It is in a friendly
community and she likes all the neighbors she has met so far. She hopes to develop a circle of support in
Quincy and in her community. I plan to
interview her in a few months and see how things are going on her journey.
Aubrie is an incredibly successful self-advocate. She does
presentations with her organization called Expect Extraordinary. Aubrie was recognized as the 2014 Illinois
Statewide Transition Conference Student of the Year. In 2019, Aubrie was a top
finalist in the NPR Student Podcast Challenge. Her podcast is featured in an
episode of NPR's
Code Switch.
Aubrie has been an advocate as long as she can remember. After
learning about Martin Luther King, Jr. in third grade, Aubrie said,
"Martin Luther King, Jr. said we should treat everybody equal. But we're
not doing a good job of that She once visited
the state capitol and sat at the governor's desk. She's attended
statewide conferences, rallies at the capitol, and met Temple Grandin. In
June 2019, Aubrie graduated from Illinois Partners in Policymaking.
When I asked Aubrie to
share some thoughts about what makes her successful, this is what she said:
·
Find good and supportive people in your life. You might have staff
that helps you but also you need to find friends and family who are in your
circle of friends.
·
Be true to who you are so people know the real you. You need to be who you are so people can help
you create a life that works for you!
·
Accept your disability as a whole and accept who you are at the
moment.
·
Ask for help when you need it. Have a team to help you problem
solve. It is difficult to know when to keep trying and when you need to speak
up and ask for help.
·
Always be dreaming about your life in some way. Aubrie knew she
loved theater and wanted to be an actor on Broadway and she needs people in her
life who will honor her dream.
·
Keep going and never give up!!!
·
Surround yourself with people who “get you” and make them a part
of your life.
·
Don’t be afraid to try new things.
·
Tell someone if you are afraid so they can help you work through
the issues. Don’t give up because of fear.
In her family their motto is “WE DO HARD THINGS”.
·
Dream big! One of Aubrie’s superpowers is that she is a
spectacular dreamer. She would like to bottle dreaming so she can give it to
other people.
·
If you get discouraged or disappointed, just accept it as part of
life. If she tries something and it doesn’t
work out it can be devastating but she just realizes that she did all she could
and then the decision isn’t about her any more – it is about others. She lets it go and it helps her deal with
disappointment.
Aubrie says,
"People with
disabilities should be treated ordinary. But we do have some extras."
Our ExtraOrdinary dream is a
world where...
People with disabilities take
charge of their own lives.
People with disabilities live,
learn, work, play, and worship in ordinary places with everyone else.
Old ideas and attitudes
are replaced with open minds and welcoming hearts.
You can get in touch with
Aubrie through her email
Broadwayaubrie@gmail.com
Social
Skills to Social Success
Virtual
Group
Family Matters Parent Training and Information Center
will be offering The Social Skills to
Social Success virtual support group. This group is designed for youth ages
14-22.
It is not always easy
for children with disabilities or special health care needs to make friends or
build social skills. It takes work. In addition, it can make such a difference
in their lives to be able to connect with other children and people outside the
family.
See this testimony from our friend Zoie.
It
has not always been easy for me to learn social skills. I have a diagnosis of
NVLD and it makes social situations more difficult for me to navigate.
Sometimes it feels like there are all of these social rules and I don’t know
them. I have learned a lot since I was younger and have gained a lot of social
skills. Social skills are important when it comes to making and keeping
friends, carrying on a conversation, finding and keeping a job, and asking for
help. A lot of people have helped me build my social skills. I feel like I
learn the most from my friends. I also think it is helpful when I practice
using my social skills when I talk to my doctor about my health or when I order
food at a restaurant. I have been looking for a job and recently applied for a
job and I was contacted for an interview. I had to use my social skills during
the interview. Thankfully I was offered the job and will start soon. Building
strong social skills have helped me become more independent.
The objective of social
skills training is to teach students to acquire healthy social relationships by
improving their social skills and social problem-solving skills.
In our new virtual
support group, we will explore different aspects of social skills and improve those
skills through educational materials and group discussion.
These meetings will
take place on the third Thursday of each month. You must first contact our
office to receive information to join the group. This allows youth to have
discussions in a safe environment. For more information, contact us at Family
Matters at 1-866-436-7842
Happy summer to all of you! I hope you are enjoying your
summer so far.
In the summer I work at a camp as a general worker and in an
ice Cream & candy store. It is lots
of fun and a little less busy than the rest of the year.
This month I interviewed my friend Kari Winters. She is an
amazing self- advocate and she has had lots of interesting adventures in her
life. I was in special Olympics
gymnastics with her for many years.
Kari helps her sister make jewelry for her business. She sings with a glee club and is a member of
Aktion Club. Aktion club is part of the Kiwanis but run by self-advocates. It is a service organization so the goal is
to help others. They have lots of great activities locally and around the
world. I am also a member of our Aktion club and so I get to see Kari a lot at
the meetings. She also coaches kids in gymnastics at Flying High and she works
at the Humane Society with cats. She has
4 cats and loves them very much .
Kari went to Elmhurst college for 4 years in the ELSA Program.
It is now Elmhurst University. Her group
had the same learning opportunities every other traditional student had but
things were adapted. She loved going to college.
I asked Kari what helped her be successful in college and
she said that she knew that she wanted to go to college and had confidence in
herself. She had support from others especially her parents. She said “I could stand up for myself and I
knew my limits”. Kari believes that you
can only fail at something if you don’t try it.
I love that philosophy.
In college she was thrilled when her professor encouraged
her to go to Springfield as a guest speaker. She talked to legislators about post-secondary
education. It was very exciting and an honor.
In 2020 Kari won first place in the state for the Miss
Amazing Pageant for girls and women with disabilities. For her talent she sang and signed “SPEECHLESS”
by Naomi Scott from Aladdin. Then as MS.
Queen, she went to the national pageant in Nashville. She performed her talent,
had an interview with judges, and she was in a formal gown. SO exciting!!!! She might do it again but she
is not sure.
Kari has advice for other self-advocates. First, she thinks it is important for people
to find their passion because it is good to do what you love. She believes
successful people try new things and take risks. She knows that It is important
to have courage and confidence in yourself.
So don’t be afraid, just go out and try it and find people to encourage
you in your life and support you when you need it.
What an amazing person!! I am so glad to have her as my
friend.
I hope she encourages you just like she encourages me!
Happy July !!!
Bridget Brown
