Making connections with adult siblings of people with disabilities and the people who love them

Archive for the ‘autism’ Category

Plato’s Transition From High School

Transitions are a very important part of life and for most people high school is a very large period of transformation. This is the period of our life that we go from being children to young adults and this transition can affect us thorough our lives.

By the time we, Plato and I, entered high school, Plato was set back a year so now he was in my grade level.  Alabama was going thorough a period of integration and were bussing children to provide diversity in schools.  So, we were bussed to a school far out in the rural part of Alabama called Mary G. Montgomery High School. I had already lived through the title and stigma of being called Plato’s sister in elementary and middle school and saw High School as a chance to overcome the title and start a new. This school did not know about him and I could redefine myself. So, my freshmen year of high school I made it my point to became the best at everything I could participate in at school.  I made the honor roll, became student council president, a student Ambassador to Russia, homecoming queen runner up, and Miss Viking, basically I became an avid over achiever or goody two shoes.  I did all of this just to out shine my brother’s condition. I hate to admit it but I did not tell people he was my brother at first. Now, If they asked me if he was my brother I would say yes but if they were talking about the weird new kid at school I promptly walked away without saying a word. Yes, I am ashamed of this time in my life and I constantly try to atone for it.

During this time, the roles switched and by sophomore year, Plato was now known as Regina’s brother. We did not mind this switch because I was able to throw my will around school and keep older boys from messing with him. I remember being in class and seeing him get cornered in the hallway, and I immediately left my classroom, ran down the hall, and stood between my brother and the boys. I got in their faces and said, “If you touch him, I will get my friends and kick your A@%.” So, my popularity helped and I did not get in trouble from my teacher for leaving the classroom because I was known for being an excellent student.

Getting Plato through high school was a challenge. I had to go to all his teacher’s classes, get his assignments, and relay messages back to my parents. My father even had to finally go and sit in the classroom with him to make sure he focused on his tests to graduate from high school. The sad thing was that we were not able to find a college or secondary school that could house or educate him at the time. He is so incredibly smart but also very independent and will just walk away whenever he feels like it. Most group homes mandated the residents do everything at the same time.

We tried a group home for him but they panicked when he drove off to Wal-Mart to get some items. They finally said that he was just too difficult to participate in their program because he wanted to do things on this own time. I am not sure what is available for young adults with ID/DD now but I would love to see a program that had an apartment complex and housed adults with developmental disabilities in their own individual apartments with a roommate or two around their same level of independence.  I could see a group leader coming in once a day to make sure that ate, took their medication, or got to work. Then they would be free to do what they wanted to on their own time schedule. It would also be nice if a company would employ these individuals, provide transportation to and from work, and give them jobs that match their interest and skill levels.  I would be interested in finding out what is available to adults with DD/IDD now and programs that focus on maximizing their independence.

What have been your experiences with transitions? What has worked and what challenges remain?

Let’s Talk About Sex– An Expert Perspective

Regina’s blog post about her family addressing the sexual expression of her brother Plato provides a useful point to begin a conversation about developmental disability and sexuality. Her post really begs the question: have you or your family members had a conversation with your family member with a developmental disability about sexuality? If not, why not?

I offer a few reasons why most people in the United States, along with other many cultures, experience barriers in talking about sexuality, particularly when addressing the desires/needs of people with disabilities. Additionally, I offer some tools to help build the bridge to having a necessary conversation around sexuality.

Balancing Sexual Messages

Regina starts the blog with the sexcellent quote from Salt N Pepa’s Let’s Talk about Sex – “let’s talk about all the good things and the bad things that may be.” As a sexual health scholar, this line is a revolution in talking about sexuality because it provides a catalyst to talk all the GOOD and the BAD about sexuality – the harmful and the pleasurable. In a culture so saturated with sex negative images of people being ravaged with no discussion about safer sex practices, it is nice to find some balance to these images with discussion about some of the good aspects of sexuality and how to be protected to fully enjoy the experience(s).

In 2001, the 16 Surgeon General of the United States Dr. David Satcher wrote the Call to Action to Promote Sexual Health and Sexually Responsible Behavior to promote conversations throughout the nation about sexual health. He believes conversation in various community and familial spaces is key to promoting sexual health and eliminating health disparities. In the report, Dr. Satcher addresses the disability community by stating: “There are also persons who are challenged with developmental, physical or mental disabilities whose sexuality and sexual needs have often been ignored, or at worst, exploited and abused… Although appropriate assistance has been developed for these vulnerable populations, it is seriously underutilized…Additional materials and programs, as well as further research, are needed.”

Disability & Sexuality

Dr. Satcher touches upon some of the key problems for people with disabilities and sexuality – we are often overly represented in populations experiencing sexual abuse, exploitation and hate crimes. It therefore seems often easier for people who are interested in the well-being of people with disabilities to protect us or keep us away from sexuality. In some cases this idea of protection takes the form of compulsory sterilization, as Regina touched in at the close of her blog post when she wrote: “At one time in this nation’s history certain states sterilized people with developmental disabilities. This action was wrong and robbed many individuals of their reproductive rights.” Certainly true that this practice robs people of their sexual and reproductive rights, it is not sure that these practices have stopped as many scholars contend.

The sterilization of people with disabilities is still constitutional under the United States Supreme Court opinion Buck v. Bell (1927). People with disabilities continue to be sterilized throughout the nation, with the most recent case making national news in the US being the Ashley X case.  Her parents stated they had her breast buds and uterus removed, along with being placed on high levels of estrogen so that she could be kept small and easy to care for, along with being protected  from sexual violence. Factually this is incorrect, as sterilization may ward off unintended pregnancies but CANNOT protect anyone from sexual violence or STDs, including HIV and AIDs.

My post seems to be leading you to the same place you came here with: fear, questions and without a clear path for supporting sexual health for people with disabilities. Below I offer you 6 steps to work on having healthy meaningful conversations about sexuality with your family member with a disability. Simple Googling can answer the question affirmatively: a disability does NOT preclude sexuality – so it is important to be prepared to address this issue when it arises.

Tips to Talk about Sexuality

Step 1: Start by congratulating yourself for getting this, for seeking information and wanting to move forward positively! That is a great start.

Step 2: prepare a bit for some areas that you may be asked about, like anatomy, developmental stages to give information and how to stay calm when delivering information that we have ALL been socialized to be afraid or ashamed to talk about. Some great starting books to learn about sexuality, with disability components, include:

1)      Teaching Children with Down Syndrome about Their Bodies, Boundaries,  and Sexuality

2)      Words Can Work: When Talking with Kids about Sexual Health

3)      Guide to Getting it On

4)      Our Bodies, Ourselves

I have used all of these books in teaching parents of people with disabilities, people with disabilities, and college students (of different abilities) about sexuality. They include little vignettes or stories to help ground the methods in exchanges between people – to model behavior. Those vignettes serves as a great models for role-playing with friends or loved ones, if you feel you need practice before talking to your family member with a disability about sexuality.

Step 3: Consider role-playing or going through a possible conversation that might come up with a family member. Practice using proper medical terms for autonomy so you teach your family members how to properly identify their body parts. Role-playing how to talk about sexuality can be very useful. This is true because you can work out any giggles you might have; you can deal with a “curve ball question” and deal with your reaction without shaming your family member. And it helps your friends or loved ones learn how to talk about sex too!

Step 4: Have a conversation with your family member about sexuality. Ask if they have questions, if they want to talk about any feelings they have about their bodies, relationships, etc.

Step 5: Understand you may not have THE answer to every question. Just admit that you need to look it up and use it as a learning period for both you and your family member. A good teacher knows that s/he does not know all the answers!

Step 6: Keep practicing and keep the door open to other conversations. You can do this simply by saying “if you ever have any questions, you know you can come to your sister, brother or I to talk. We have all had questions, it’s normal and natural. I’m here when you need me.”

Can you see how conversations can spread and help others? Dr. Satcher is right, if we start with conversation – the changes we can make in health and quality of lives for all Americans is priceless.

If you have further questions, please do not hesitate to email me (Bethany Stevens) at bstevens@gsu.edu.

Welcome to Plato’s Sister

Plato’s Sister

Welcome to the blog called “Plato’s Sister”. The purpose of this blog is to reach out to the adult siblings of individuals with developmental disabilities, build a community where readers can share their hopes and dreams, provide a place to express challenges and concerns facing our siblings, and share information that can help foster transitions from parental care to adult sibling care. We also want to celebrate and discuss the memories that established special sibling bonds and discuss the next steps /new roles in the relationship as caregiver, guardian, and/or advocate with/for our siblings with developmental disabilities.

First of all, I would like to explain why I chose “Plato’s Sister” as the name for the blog. My older brother, Plato, was diagnosed with “classic autism” at the age of four from the T.E.A.C.H. program in North Carolina. We moved from North Carolina to a small town in Alabama when he was seven years old. No one in this town had ever heard of autism and his behavior quickly made him the center of attention from teachers and student at the elementary school we attended. (Now, let me state that this was 40 plus years ago and a lot of people had no idea what “Autism” was or how to treat it, not just this small town.) So, when I started school one year behind him I was immediately called “Plato’s Sister” and that was my name through elementary and middle school. Very few people, outside of my classmates and close friends, even knew my name.

At the age of six, I had to answer questions from adults and students about why Plato behaved the way he did. I also had to help members of the community understand autism better. My brother told me once that, ”Having autism was like being an alien on a strange planet and that whenever you tried to understand the people on this planet it hurt and you had to run back to your on world.” So, this was my answer to question I was often asked.  As a child I hated the label, “ Plato’s Sister” and all the questions that followed. However, as I got older and wiser, I first learned to accept it and now I look back on those times with loving memories.

My life was shaped because of my brother Plato and having him in my life made me a better person. I feel my patience, sense of humor, ability to understand, and my determination was gained from living with a sibling with a developmental disability.  My brother Plato also influenced my view that everyone can learn and has something to offer. When you love someone with a developmental disability your world slows down and you learn to appreciate the small things in life. You gain a perspective that is priceless and that a person is so much more than what you see and hear on the exterior. I am reminded of the words from President Theodore Roosevelt that stated,” For those who fight for it, life has a flavor the privileged will never know.”

I want all the adult siblings of individuals with developmental disabilities that read this blog to share their experiences, give us ideas for topics, and help us advocate for our brothers and sisters.  I want the format of this blog to open with a memory of a situation we faced, followed with how we handled it or should have handle it, and conclude with helpful information. If you have any advice, memories, or questions please feel free to share them on this blog and we will try to help you find the answers, laugh or cry from your memories, and/or celebrate your battles won on the behalf of your sibling.

 

Sincerely,

Plato’s Sister

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