Love Has the Power of Gratitude

 

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,

 

Sarah Bak and Shepherds College

 

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 

Resource Alert! “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults”

 

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

Accommodations in College and the RISE Act

 

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

Rachel

 

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 2^nd-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

Pursuing Post-Secondary Education: Think College!

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.