 E-Speaks Newsletter
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After high school for Friday, 2 June 2017 - Autism Speaks in New York, New York, United States
Sibling walks alongside twin brother with autism at graduation
Aly Bonville shares her touching story about growing up with her twin brother, Anders, and how she got him to walk with her at her graduation ceremony. Read More
For all of my life I have been with my twin brother Anders.
Nearly 18 years ago in a small hospital room in Birmingham, my brother and I were born. We were perfect twins; one girl, one boy, a total of 20 fingers and 20 toes, and a long life ahead of us. My mother was overjoyed about her two healthy twin babies, and could not wait to start dressing us in matching clothing and taking us on family outings to the zoo and to the park. Everything was as it should be until the talking, energetic twins became a talkative, adventurous girl and a quiet, inactive boy. Anders at one time had been a typical functioning toddler who could speak and walk, and then one day he was not.
When we were 2 years old Anders was diagnosed with autism. That was the hardest thing for my mom. She always dreamed of seeing her son play on a sports team, her daughter and son going to football games on the weekend, her kids walking together at graduation, and going to college. No mother wants to hear that her perfectly developing child is going to be mentally disabled for the rest of his life. Luckily, my mother is not the type of person to give up easily and she realized that some of the dreams she had for my brother and me could still be achieved, but we would just have to take an alternate path to get there.
As we grew up together I learned, along with my mother, many things about Anders, such as what his likes and dislikes are, how to handle him in a crowd, and how to be prepared to explain to people that he was nonverbal and does not understand to not have a tantrum in the middle of a store or restaurant. My mother always worked hard to make sure that Anders' autism didn’t stop us from being a normal family. If we wanted to go to the park, we would pack a bag for Anders, put him in a stroller and go. We would go to the zoo, football games, baseball games, and many other local events. It was not always easy receiving stares from others after Anders did something weird, but I loved it, and I never minded helping with my brother because I loved him and I wanted him to be a part of everything in my life.
When we entered the public school system I noticed that many kids excluded Anders because he was different. Having grown up with Anders, I couldn’t imagine not having him be part of classroom activities and so my mother and I made sure to always introduce him to other students and have him give them high fives. Then they would realize that even though Anders has autism and couldn’t talk to them and made weird noises, that he was just a kid like they were. Over the years, Anders stayed with my class and soon everyone knew Anders.
There was a brief period of time where Anders attended a different school than I did. It was the first time Anders and I had ever been separated. Although I was sad, I realized that I could still help Anders be included in his class room at the other school.
I created an “Ask Aly” box for the kids in Anders' class to ask me about autism.
They were able to ask me questions about autism and about Anders. Many kids would ask if Anders would ever talk, what his favorite color was, what kind of music Anders liked to listen to. I would have to explain that Anders can only vocalize and that he has tried to learn with assistive technology but he still does not know how to use it, though there is always hope. Anders, however, does speak with his eyes and shows many emotions that way. I would also have to explain that I may never know what Anders favorite color or type of music is, but that I know he likes to listen to noise. I would tell them that Anders loved music and that that was a way he and I had communicated, I play, and he likes to listen. The most important thing, besides educating these fifth graders about special needs, was that it really humanized my brother. He would get to be a part of the classroom and would carry the box to them every day and interact with them while they submitted their questions, It made Anders a part of the classroom and made students more accepting of him. Anders rejoined me at Oak Mountain in middle school.
During middle school I began playing the oboe. Anders and I had always used music as a way to communicate. He and I use to sit and listen to our mother play the guitar, and when I learned to play he would dance to the music I was playing. Music has always been a passion for both of us and became even more valuable because it was a way for us to do something together. By the time we entered high school many things had changed. Anders and I had our own individual daily schedules and our own needs and wants. However many things had still not changed. My brother was cognitively 2 years old, still nonverbal, not potty trained, and continued to require 24/7 supervision and care, and I still wanted everyone to see that Anders was still just as normal as they were, just in a different way.
Starting my junior year of high school, I began thinking, as most juniors do, about graduating high school. I quickly realized that my imagination included Anders walking with me at graduation and I began to think of a way to have him there next to me.
For my mother and I, it was never a matter of “if” Anders would walk with me at graduation.
When we got back from Christmas vacation during my senior year, many of the graduation festivities began. If I had to sign up for a cap and gown, I made sure Anders had a cap and gown. If I signed up for my diploma, I signed Anders up for one too. I didn’t let my mother or anyone in my family know what I was planning until after spring break, about 2 months before graduation. At that point we began working with Anders teachers to have a clearer game plan for the day of.
With Anders, as with most special needs kids, there were many different things that I had to account for: was he going to be mad, was he going to be content, would he be vocalizing, would he be having a break down. All of these things were going through my head and I had a plan for each one in case something did not go as planned. The morning of graduation, all of the students arrived for practice and we created the final plan for getting Anders across the stage. I was very nervous the whole day because whether I had a good night depended on whether Anders had a good night. The night could not be complete unless I had my twin brother with me. Anders had been in a good mood earlier in the day, but when we arrived at the area at 4:30 that afternoon, he started to have a break down. This did not help my nervousness and I could not stop hoping and praying that Anders would be cooperative when his turn came. Since I was an honors graduate, my name was called first to receive my diploma.
After I exited the stage, I separated from the rest of my class and ducked behind a curtain to meet my brother who was being strolled in his wheelchair to keep him calm. I made sure to run down the hallway and stroll him very fast so that he would be happy, and when the time came for his name, I ran with him from behind the curtain and up the stairs onto the stage. It was a perfect moment. Although the principal had asked everyone to hold their applause until the end, everyone clapped for Anders when he was on the stage, including the principal herself. He was smiling and happy and I was too. We approached the principal and I told Anders to give her a high five and we walked off the stage and back around the curtain.
Anders was smiling from ear to ear and I knew from his eyes that he understood that he had just done something amazing.
I gave him a big hug and then went to rejoin my class on the stadium floor. It all took 5 seconds to happen but it was the most amazing 5 seconds of my life. Many people would have seen Anders in his blue jeans, crocs, crooked tie, and no cap and would have wished all of that to be fixed, but my mother and I know that if Anders had been any different it wouldn’t have been the same. After I returned to my seat, I could not stop smiling, and all of the emotion from earlier — the anxiety and the nervousness — went away. Anders being able to graduate made my graduation something I will never forget.
In the fall I will be attending Auburn University as a Music Education major to pursue a career as a band director. The impact that music had on my brother and I helped me realized my passion for teaching music. Anders will remain in the Oak Mountain school system until he is 21 and ages out. Although it will be a change being separated from my brother, I am excited. The reality for Anders is that one day our mother will not be able to physically care for him in a way that gives him the quality of life he deserves.
When that time comes he will be placed in a special needs community. When my mother is no longer there, I will be in charge of Anders. My mother has always made sure to emphasize that she does not want me to be Anders full time care giver. She only asks that I be there to oversee his physical and financial well being. I am more than happy to be there for my brother, and I intend to make sure that he sees family, goes on trips with us, gets to doctor appointments, and has what he needs, just like my mom and I always have. We don’t have it all figured out, and we probably never will. The fact is that 18 years ago, none of us knew what an exciting and stressful journey we would be embarking upon. When my mother had twins, one girl and one boy, she knew she would have the perfect family, and she was right.
Our lives will never be perfect by any typical standards, but it is our normal and it is perfect to us.
Autism Speaks offers a Transition Tool Kit to serve as a guide to assist families on the journey from adolescence to adulthood. For more, check out our top 10 most downloaded tool kits, From Diagnosis to Adult Services.
The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.
Postsecondary Education Guide helps you explore all of the learning opportunities available after high school
With only about one third of youth with autism attending college in young adulthood, it's important to be aware of other options. Autism Speaks offers a valuable resource guide to help find alternative educational opportunities that best match your unique strengths and challenges. Read More
 The Postsecondary Educational Opportunities Guide is designed to help you and your family explore the different opportunities and learning environments after leaving high school.
With only about one third of youth with autism attending college in young adulthood, Autism Speaks wants to offer the best possible resources on this topic to help you explore all of the various options available to you. We hope this resource will help guide you through your high school years and the years following graduation.
The Postsecondary Educational Opportunities Guide is broken up into the following sections:
 Introduction
Preparing for Postsecondary Education
Types of Postsecondary Education Programs
Obtaining Services and Asking for Accommodations
Life on Campus
Learning to Live Independently: A Personal Perspective
Peer-to-Peer Advice
Advice for Parents
Alternative Learning for People With Autism: A Personal Perspective
A Retrospective on Postsecondary Educational Opportunities
Resources
For additional information about the transition process, check out the Autism Speaks Transition Tool Kit.
For more Postsecondary Education resources, visit the Autism Speaks Resource Library.
To learn about the Brian & Patricia Kelly Postsecondary Scholarship Fund, click here!
Assessment tool helps develop personalized transition plans focused on community integration
Community integration plays a critical role in the happiness and well being of all people, and it is important for transition plans to focus on skills that maximize inclusion for people with autism. Categories of this unique community-based skills assessment include health and safety, peer relationships, personal finance and more. The tool is also available as an app. Read More
Autism Speaks is excited to announce that the Community-based Skills Assessment (CSA), a tool to help you develop a personalized transition plan, is now an app, powered by Identifor.
Check out the app today by downloading it in the Apple or Google store!
The challenges associated with the transition from school services to adulthood for individuals with autism are well documented. Every individual with autism is different and as a result, there is no "one size fits all" plan for the path to adulthood.
The most important factor in creating a plan is to focus on the individual. His or her strengths, needs, challenges and preferences will play a critical role in ensuring a successful transition process. The CSA, developed through a contract with Virginia Commonwealth University's Rehabilitation Research and Training Center, was designed to help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive plan.
The CSA is the first tool to assess needs in the area of community-based living, from transportation to financial management to peer relationships and more. The tool is divided into three levels based upon the age of the individual being assessed. Eight critical areas of functional life skills will be assessed:
- Career path and employment
- Self-determination/advocacy
- Health and safety
- Peer relationships, socialization and social communication
- Community participation and personal finance
- Transportation
- Leisure/recreation
- Home living skills
The assessment uses both a criterion-based observation and interview-based process to measure the individual's knowledge, skills and behaviors.
Click here to read the introduction and learn more about the CSA. You can also read all about how it works here!
This assessment was developed for Autism Speaks through a contract with Virginia Commonwealth University's Rehabilitation Research and Training Center. It was designed to assess an individual's knowledge, skill and social communication abilities.
Raise funds and awareness for Autism Speaks while doing something good for your health and fitness on June 7
Join us on Wednesday, June 7th as we celebrate Global Running Day while raising funds and awareness for Autism Speaks with Charity Miles. Participation is free and as easy as 1, 2, 3! Read More
GIU7
Global Running Day with Autism Speaks
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Mercoledì 7 giugno dalle ore 0:00 alle ore 23:59 EDT
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Biglietti disponibili
miles.app.link
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Partecipanti: 144 · Persone interessate: 236
Condividi questo evento con i tuoi amici
Join us on Wednesday, June 7th as we celebrate Global Running Day while raising funds and awareness for Autism Speaks with Charity Miles.
Participation is free and as easy as 1, 2, 3:
1. 1. Download the free Charity Miles app from the App Store on your iPhone or Android device
2. Create a FREE account and join our team “Global Running Day 2017”
3. On June 7th, lace up your shoes, grab your phone, open the Charity Miles app, set Autism Speaks as your charity of choice, and then run!
No matter where you are, you can run! And when you do, run for Autism Speaks to celebrate Global Running Day!
Through your efforts to run or walk on June 7th, up to $.25 per mile will be donated to Autism Speaks by Charity Miles and their sponsors. Together, our miles will make the world of difference as we enhance lives today and accelerate a spectrum of solutions for tomorrow for the 1 in 68 children with autism.
Nonprofit Organization
Team Up with Autism Speaks is the endurance program dedicated to raising funds to support the mission of Autism Speaks through participation in marathons, half marathons, 10K's, 5K's, triathlons and other endurance events.
Nonprofit Organization · New York
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