Forty Years of Helping Families (from a speech by Janet Vohs)

Excerpts from a speech given by Janet Vohs, Federation staff member, and parent of Jessica Vohs, at Gala 2013, Celebrating Every Child -  

I want to talk with you tonight about the incredible honor and privilege—not to mention thrilling adventure! — is has been for me to be part of the work of the Federation for Children with Special Needs for nearly 34 years. My daughter Jessica and I are who we are today largely because of the Federation.  

Like many parents, 40 years ago when we learned that our children had significant disabilities, I was advised to institutionalize Jessica.  Of course, I was hopelessly in love with her beyond anything I would have imagined. I knew that wasn’t going to happen. Yet I was very afraid of how we were going to make our way in a world that would put her “away” or view her as a tragedy.

Early Intervention did not exist, and the short preschool program was three towns away, not part of our community. But when Jessi turned 6, thanks to Ch. 766, she could attend a local public school half days-- a totally segregated room with just 5 or 6 kids with severe disabilities. Inside, I was ever fearful of what would happen to Jessica. I knew my love alone was not enough.  I had to help create a wider world for Jess and really did not know where to begin.

As a single parent, I needed to find a job during her school hours.  Luckily, the Federation found me, and I began my work there just as Jessica started school.  I walked into the Federation a frustrated, fearful, clueless mom, passionately committed to my child. I found there an automatic sense of belonging.  We were all in the same boat. There was no manual on how to do this. We had to go with our own truth in our own corner of the universe. For me that truth had to do, first, with belonging.

The Federation held and still holds a vision of belonging, a possibility of wholeness, for families no matter what their situation. This background of commonly shared difficulties, no matter what disability label our child had, shaped our relationships with each other and with the families we served.  It also gave rise to a shared belief in the profound significance of what we were doing—persuading, forcing society to grant justice to its children. Simple justice, belonging, education, health care, community, empowerment -- all of these issues guided us and were foundational to the work.  OUR individual struggles -- the nitty-gritty details of our daily lives, our children’s experiences, and how hard it was, these are what informed the policy work we did. 

We asked ourselves and each other:  What would it be like if things were different? Our questions led us to consider possibilities beyond what we could see. We thought about what the words we heard and used said about the people we cared about.  For example, shifting from integration to inclusion deepened the sense of belonging we were aiming for, as did speaking of homes instead of slots, facilities, placements, residences, houses. We spoke about education and learning, not just coverage or care or training or therapy. Most important, we insisted on speaking of our children as children first.

Our Policy work unfolded out of possibility in the areas of: inclusion, transition, quality education, health care, and expanding the vision.

By stressing inclusion, we emphasized not just being there but being with, participating as a valued person. We fought for that.  From the beginning, we articulated our goal to help bring about an overall shift toward a society that embraced the full spectrum of humanity. Today, the very first sentence of the federal special education law reads:  Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Later, in 2004, Congress added this language, stressing that the law was amended so “that special education can become a service for such children rather than a place where such children are sent.”

Like other children, our kids grow up.  In 1990, federal special education law was amended to require schools to assist students to transition from high school to the world of work and life in the community. In 1990, the adult world for people with severe disabilities was far more dismal than I had imagined.  The best of what was visible was a sheltered workshop, perhaps supported employment.  I was told that Jessica would never even be considered for a sheltered workshop. She was too disabled!  She’d perhaps be eligible for some kind of custodial program and that was even a long shot!   This NEW section of law required that a student’s vision for her life be included in the educational program and that educational services were to support that vision.

Our vision for quality education spurred us take part in the movement for general education reform to ensure that students with disabilities were included in these efforts.  Thanks to education reform, by 2004, students with disabilities had to have access to the general curriculum.  In the past, rather than learn to read and write, about history and science, our kids got therapy or “functional skills training.” Someone like Jessica could spend decades learning to button a jacket or zip a sweater or other “therapy.”  The reformed law even required that our kids’ teachers be qualified to teach the subject matter they were teaching. We helped drive this agenda by writing the book All Kids Count on including students with disability in statewide tests like MCAS.  This bright light on our children’s educational progress helped drive reform for them.  Our book Every Single Student spelled out in detail how our kids could be part of the academic life of the school. Our book Literacy Resource Guide for Families and Educators put crucial new research on teaching reading to students with disabilities in the hands of educators and families across the country. 

In the 70’s and 80’s similar kinds of transformation were occurring in health care through the Federation’s work with the federal Bureau of Maternal and Child Health. Our mantra was Family Centered Community Based Coordinated Care.  We used this language to bring families and communities more powerfully into the scope of the medical world. We worked to redefine the meaning and application of this mantra throughout every aspect of health care. These 6 words also became law of the land for Title 5 Maternal and Child health care programs because of the work we did at the Federation and also because of the efforts of another pioneer parent, Julie Beckett out in Iowa. 

In our work to ensure quality health care and education for all students, it became ever more evident that many families who did not have children with disabilities were still left out. Educationally and economically disadvantaged families—immigrant families, families of color, non-English speaking families—were and to a large degree are still left out.  We took the knowledge and effective approaches toward parental empowerment that the Federation had crafted over the previous 25 years and tailored them to empower parents in economically and educationally disadvantaged families. 

How did all of this happen?  Parent empowerment.  In its voluntary infancy, the Federation became the pilot project for a federally funded parent center in 1974. Federation Founder Martha Ziegler and a core of four other parent leaders across the country became the launching pad to make the possibility of parent-to-parent empowerment a reality nationwide.  Since 1984 this network of parent centers is an established line item in the federal department of education budget, with over a hundred centers now in every state and territory. Martha Ziegler with her counterpart from the Ohio parent center actually typed the language for this part of the statute in U.S. senator Lowell Weicker’s office.

As wrap up: I would like to leave you with a call to action in these areas I’ve spoken about. 

·         The Issue of belonging will be with us forever. We need to keep paying attention to the meaning we attach to difference. We must remember that our folks with disabilities are, first and last, people like the rest of us, not simply individuals. We need to pay attention to who’s being excluded and find ways to include them.

·         Help Give Voice for the voiceless.  Jessica drove around with a motto on her wheelchair for years:  “Not being able to speak isn’t the same as having nothing to say.” Although Jessica has benefitted from advances in communication technology, we still have a long way to go.  There are also many others who have yet to find their voices for other reasons. We need to continue to reach out to disenfranchised families in disadvantaged communities. We need to listen harder and observe ever more closely and find more ways to help.

·         Build Better connections to adult disability community and to adult service agencies. One of the most important things in Jessi’s life is being part of BCIL and ADAPT – a national activist organization of people with disabilities. These organizations are spearheading the campaign to defend the rights of people with disabilities to live freely in their communities. They were key to gaining accessible transportation and for Personal Care Assistants who are the lifeline for folks like Jessi who need considerable help and who abhor the thought of being institutionalized.

This is a story of what a vision of belonging can look like. As Jessica’s vision was realized, she did become a member of CitiYear, the first person with severe disabilities. This opened the door for her to go to College at Mass College of Art and the Museum School, and to develop herself as an artist at the Kaji Aso art studio where she studied intensively.

These successes would not have been possible without the Federation’s powerful and transformational leaders. I am forever honored and grateful to have played a part in this remarkable organization’s work and I thank each and every one of you who have been a part of Jessica’s and my journey.

- By Janet Vohs

How To Tell Your Child About ADHD: Tips From The Experts

Your child has been diagnosed with ADHD, and now you are wondering the best way to tell your kid about his or her diagnosis. You've heard different and sometimes conflicting advice from different professionals, and now you are unsure how to proceed next.

 The best thing to do in a situation like this is to consult the experts, and who could be a better expert in this case than adults who were diagnosed with ADHD as children?  That’s why this article focuses (pun intended) on the experiences of Sheila* and Jake;* two Generation X-ers who grew up in the same town, were in the same grade in school, and were both diagnosed with ADHD at the age of eight.

Although Sheila was one of the top readers in her class, she exhibited problematic behaviors, such as being disruptive in school and failing to complete her work.  She eventually was evaluated by a doctor and diagnosed with Attention Deficit Hyperactivity Disorder.  The doctor told Sheila’s parents, “We’ll start her out on a small dose of Ritalin, and see if her teachers notice a difference. Don’t let the teachers know she’s on Ritalin, so they’ll be able to make an unbiased observation of her behavior and any changes they notice. ”

The doctor also told her parents, “Don’t come right out and tell your daughter the name of her disorder.  She’s too young to understand it, and it will only confuse her. Instead, wait for an incident to occur, and use it as a teachable moment.  Explain how everyone has strengths and weaknesses, and that one of her weaknesses is that she has trouble paying attention. When she’s older, perhaps when she’s in junior high, you can tell her more about her specific disability.”

Since Sheila’s parents wanted the best for their daughter, and because they had the highest trust in medical professionals; they did as the doctor said. The following school day, Sheila’s mother said to her, “Today you are going to start taking a pill that will help you pay attention in school; and you are not to tell anyone that you are taking it.”

Sheila understood, from what her mother had said; that her pill and her attention problem were private topics that were not to be talked about.  She knew that she had “special needs,” which was the reason she was pulled out of her class to go to the Resource Room. Some of the other students in the Resource Room included Harry*, a boy with Down’s Syndrome; and Debbie*, who had trouble learning to read.  For many years, Sheila falsely believed that she had a milder version of whatever it was that Harry and Debbie had. In Sheila’s mind, it made perfect sense, because they all received the same services in school. 

It wasn't until Sheila was in eighth grade and she asked her mother, “What is the name of the special problem that I have?” that she learned the term Attention Deficit Hyperactivity Disorder.  Still, Sheila was not comfortable telling her friends that she had ADHD.  She believed that people would think less of her and that they would bully her.

She was already being bullied quite a bit by her classmates; who targeted her for being “different.”  Although she had been an outgoing child who was praised for her creativity and her lively imagination in elementary school; Sheila became very shy and withdrawn as a teenager.  She avoided doing anything that would make herself stand out in any way, as she was ashamed of her difference and felt like a misfit. Rather than exploring and developing her own unique identity; she wore clothes that would make her blend into the crowd and listened to the same music and watched the same TV shows as her friends. Sheila was like a tiny mouse hiding in a hole in the corner of the room; fearing the larger predators that would destroy her if she ventured any further out.

Sheila felt alone and that there was no one with whom she could relate- that is, until she met Jake. Sheila and Jake had attended different elementary and middle schools, so they never crossed paths until high school.

Jake had been diagnosed with ADHD when he was in third grade. Like Sheila, he was very smart and had previously done well in school. However, his grades had begun to fall drastically. He was disruptive in class, often fidgeted, and blurted out the answer to questions rather than raising his hand and waiting to be called. He also had trouble reading for long periods of time. He was evaluated by the school, and then tested by a doctor, who confirmed his diagnosis of ADHD.

Unlike Sheila’s parents, Jake’s parents did not hesitate to tell him that he had ADHD. They told him that there was nothing wrong with having ADHD and that it was just a different way of learning.  They also told him that having ADHD didn't make him any better or worse than anyone else, and that it was nothing to be ashamed of.  

As Jake went through school, he was not embarrassed about his learning difference, and felt comfortable telling his friends. He even joked about his symptoms, and didn't think it was that big a deal.  He embraced his uniqueness by wearing clothes that made him stand out, speaking out at assemblies where he vocally expressed his opinion on various school policies, and participating in many of the school’s clubs and activities.  Jake had many friends from a variety of cliques and circles; and he was admired for his quick, sharp sense of humor and his refusal to blend in to the crowd. He was proud to be a nonconformist, and didn’t care what other people thought.

Like Sheila, Jake was sometimes bullied for having learning issues.  However, Jake refused to be defeated. He went out of his way to let the bullies know that he was enjoying his high school years to the fullest, and that there was nothing they could do to stop him or to change who he was.

Sheila and Jake grew to become good friends. For the first time, Sheila came to realize that she wasn't alone and that there was no shame in being different.  Eventually, she came to embrace her differences as well, and become a more confident and outgoing person.  As an adult, Sheila is completely open about having ADHD, and is no longer ashamed of it. She is a happy, well-adjusted adult with a positive outlook on life, a college education, and a productive job; as is Jake.

Sheila offers the following tips for parents of children with ADHD and similar disabilities, “Don't hesitate to let your child know the name of their diagnosis, and let them know as much as possible so they won't be confused or ashamed.  Also, remind them that it’s just a medical condition, and it has no impact on their worth as a person; no more than having, say, asthma or diabetes impacts their worth as a person.”  Sheila urges parents to reject the advice that her own parents were given about disclosure, because it gave her the impression that her difference was something to be ashamed of. 

“My parents never intended to deceive me or make me feel ashamed,” Sheila says. “They were simply following doctor’s orders and believed they were doing what was best for me.  It just turns out they were given bad advice.”  At the same time, Sheila recognizes that the doctor’s advice wasn't completely terrible, and she agrees about the importance of acknowledging the child’s strengths and weaknesses.  She says, “For a long time, special education was completely focused on the kids’ weaknesses, so I guess by the time I was diagnosed; the pendulum had swung the other way so that they were putting more focus on the kids’ strengths, which of course is a good thing. But at the same time you don’t want to completely ignore their weaknesses or deny that they exist. Let them know that they have a disability and what it is; but also reassure your child that they are so much more than their disability and remind of their strengths as well.” Sheila acknowledges that her parents constantly reminded her of her own strengths; and she credits much of her success to her parents and their encouragement to view herself as more than just a diagnosis.

Jake offers similar advice to parents. He says, “Be honest with your kids, but make sure you tell your kids this is not a big deal.  The worse you make it out to be and the bigger deal you make it the worse your kids feel.”  He recalls, “My parents told me I had ADHD and that was that.  I am pretty sure they told me that it didn't make me different or better or worse...it was just a thing.”  He also stresses the importance of parental involvement. Like Sheila, he credits his parents with encouraging him and motivating him to always do his best.  Jake refused to define himself by a label, and he knew he was smart.

It is important to remember that the experiences of two individuals is far from a scientific study, and the differences between the way Sheila and Jake reacted to having ADHD could be due to a number of factors.  In addition, Jake warns against a one-size-fits-all approach to telling kids about ADHD.  “Every kid is different,” he reminds parents; adding, “For me humor worked.  For some you need a more sensitive approach.” 

Nevertheless, both Sheila and Jake agree that no good can come from keeping a child’s diagnosis a secret from them.  They agree that parents should avoid saying things like “don't tell anyone you're on medication because it's none of anyone's business.” Jake does not recall his parents saying anything like that, and is grateful that they didn't, saying, “Those kinds of statements usually just make kids feel more self-conscious.”  Likewise, Sheila feels that if she had been informed about her diagnosis in a more straightforward manner, she would have had a much more positive attitude about having ADHD when she was younger.

Here is an article that gives additional advice to parents of children with ADHD; and both Sheila and Jake find the advice to be helpful: http://psychcentral.com/lib/2009/how-to-talk-to-your-kids-about-adhd/ 

*Names have been changed.

By Ann Lyons

In Defiance of Gravity: Part II

Accepting Limits

My previous article referenced the song “Defying Gravity” and the lines “I’m through accepting limits, ‘cause someone said they’re so. Some things I cannot change, but till I try, I’ll never know.”  This song can be a powerful anthem to anyone living with a disability determined to make the most of their situation and prove to the world that they are so much more than a diagnosis. In the first of this two-part series, I gave several examples of times in my own life when I overcame obstacles and proved that I am capable of succeeding despite my differences.

However, there are some times when, no matter how hard we try; we discover that there are some things that we just aren't capable of doing. My ADHD is not going to magically go away someday, and there will always be limitations on the things that I can do. 

For instance, learning to drive was a struggle for me. As a teenager, the regular driver’s education program offered at my school wasn't enough to prepare me for my license, and had to take several additional lessons with a special alternative driving school. Although many people with ADHD are able to learn to drive without any problem, it wasn't the case for me as I also have other sensory and processing issues, including NLD (non-verbal learning disability). When I am focused on looking straight ahead, my brain turns off the signals from my peripheral vision in order to prevent constant sensory overload, a common condition in people with ADHD. I also lack the ability to perceive distance and depth; and to process spatial directions. As a result, driving on the highways and on city streets was impossible for me. I managed to pass my driver’s test and get my license, but I only felt comfortable driving on the suburban streets of the quiet New England town where I lived.

When I moved to an urban neighborhood as an adult, I had to learn to drive all over again. I took lessons with the same alternative driving school I had as a teenager, but this time, I was unable to progress. The combination of my ADHD and other learning disabilities just made it too difficult to process all of the necessary cues on the road to drive safely. I made the decision to stop driving altogether. I am fortunate that Boston has such an excellent public transportation system and that my family and friends are willing to drive me places.

At first, I was ashamed and felt like a quitter. I kept thinking of all my mentors who gave me advice such as, “If you try hard enough, you can succeed at anything,” and felt that the reason why I failed to learn to drive was because I hadn't tried hard enough. Even worse, I felt that I had let my mentors down by giving up. 

Then I remembered “Defying Gravity” again. I took another look at the lyrics of the song, “Some things I cannot change, but till I try I’ll never know.”  Driving was an instance where I had certainly tried my best; and I discovered that this was something that I could not change, nor would I ever be able to change. Now, it was time for me to accept limits- not because “someone said they’re so” like in the song; but because I had tried my best and came to realize that some things are beyond my control. I realized that it wasn't worth the possibility of getting in an accident where I could injure myself or someone else just to prove something. This wasn't like learning to dance on pointe or auditioning for a play, because safety was a real issue.

Once, when I was out with my friend Lorie and she was driving us on the highway, I sighed and said, “I wish I that I could drive, too, so that I wouldn't always have to rely on you.” Lorie just laughed and said, “Becky, I've told you a billion times, I don’t mind driving you!” I said, “I know you don’t, but sometimes I wish I could be normal like you and be able to do all the things you can do.”

Lorie then said, “Okay, first of all, none of us are normal. Normal is just a setting on the washing machine. And secondly, there are so many things that you can do that I can’t. You can sing, and play guitar and piano, and you’re such a good writer, and you’re so creative with words. I can’t do any of those things, and sometimes I wish I could. And just because you can’t drive a car doesn't mean that you’re not in control of your life in other ways.”

I took a minute to muse on Lorie’s words, and I then I said, “So I guess what you’re saying is, even though I’m physically in the passenger seat of your car, I’m still in the driver’s seat when it comes to the road of life!” Lorie laughed again, and said, “See, that’s what I mean about you being creative with words. I never could have come up with something like that!”

I realize that although I have a disability, I am not without ability. All of us have limitations, even people without diagnosed disabilities. There’s a reason why they are called disabilities and not inabilities. There are some things that I am not capable of doing, but that doesn't mean that I am helpless or a failure. As many have said, the only real failure is the failure to try.

Once you have tried your best, accepting that you can’t do something is not a sign of weakness or defeat; but rather a sign of strength and maturity. It takes a certain amount of strength to be realistic and acknowledge your shortcomings; especially if you've been told your whole life, “there’s nothing you can’t do if you try.” Humility is not easy.

So, when is it appropriate to keep trying your best until you get it right, and when is it appropriate to accept limits? When you are unable to progress any further and the life, health, or safety of yourself or someone else is at risk; that is when it is time to stop trying.

It’s also important to accept limits when looking for jobs and choosing a career. As I discovered as a teenager, it can be fun and exciting to challenge yourself to rise above your limitations by taking a class or starting a hobby that requires skills or abilities that you don’t currently have. However, it is not a good idea to use this same philosophy when applying for jobs. For instance, if you are not good at math, do not take a job at a bank because you want to use it as an opportunity to improve your math skills. Or, if you are deathly afraid of snakes and rodents and want to get over your phobia; it would be unwise to take a job at a pet store. You would be putting yourself in a situation where you would have to deal with a serious anxiety trigger every day, and you would be unable to effectively perform your job. In the real world, people will be negatively impacted if you make too many mistakes or cannot perform the basic duties of your job.  So do not apply for a job unless you possess the necessary skills or are confident that you can learn them without too much effort. For instance, I've only used PowerPoint a few times, but I would not be put off by a job description that required “proficiency in PowerPoint” because I am confident that I could easily master the intricacies of PowerPoint if given the opportunity. However, I have tried to learn to sew several times and discovered that my poor fine motor skills made it nearly impossible. Therefore, it would not be wise for me to take a job as a tailor or a seamstress.  

Above all; try not to be disheartened over the skills that you've attempted to learn and discovered that you weren't able to master. Instead, focus on the things that you can do and the skills that you have, and you will be “flying so high, defying gravity!”

By Becky Rizoli

In Defiance of Gravity: A Two-Part Series

                                                                   Part I: Rising Above Obstacles

One of my favorite songs is “Defying Gravity” from the musical Wicked. It contains the lyrics, “I’m through accepting limits, ‘cause someone said they’re so. Some things I cannot change, but till I try, I’ll never know.” To me, this song, performed by Idina Menzel, expresses the determination that I have always had to strive for success despite my neurological differences, and my desire to challenge myself in new ways rather than defining myself by a label or a disability. I was fortunate to have parents and mentors who emphasized the importance of focusing on what I can do rather than what I can’t. I carried that philosophy with me throughout my life, and I am proud to say that it has led me to success.

In middle school and high school, I took a number of honors and Advanced Placement classes. I was the one of the first students on an IEP to take some of these classes. Some of my teachers were hesitant to make accommodations to classes that they had been teaching for years; arguing that since I was smart enough to be in an advanced class, I was “too smart” to need accommodations. After these teachers were informed that my disability was related to attention and processing rather than intelligence, and that they were required by state and Federal law to follow the guidelines in my IEP; I was able to do very well in their classes. I even got an A+ on my final project from the teacher considered to be the hardest and most critical grader in the entire school.  My success in these classes inspired other students on IEP’s to sign up for the classes in the years that followed; and they found that the teachers had become much more flexible about making accommodations.

My determination to rise above obstacles was not limited to academics; but extended to extracurricular activities as well. When I was five, my parents were advised by professionals to sign me up for ballet classes; in the hopes that they would improve my poor coordination and gross motor delays that resulted from my sensory integration disability. I enjoyed my dance lessons and also found a new mentor in my dance instructor; and continued to study with her throughout the years. Like all young ballerinas, I was eager to progress to the advanced level of ballet known as “pointe,” where the dancer performs on her toes, rather than the balls of her feet as beginning ballet students do.  Pointe requires the dancer to have significant muscle strength in her quadriceps (upper thigh muscles) after taking several years of ballet classes, and she wears special toe shoes instead of regular soft ballet shoes. Because of my delays, I was still dancing in soft shoes at the age of 14, while the other dancers my age had been on pointe for several years.  I was aware that pointe would be more of a challenge for me than for others and that I might not ever acquire the muscular strength necessary for pointe. However, I was determined to dance on pointe and I wanted to at least give it a try. My dance teacher allowed me to train for pointe, and by the end of my freshman year in high school; she told me I was ready. I got my first pair of toe shoes, and the following year, I performed a solo on pointe in the dance recital.

In addition to my attention and motor issues, I also had a speech disorder as a teenager. I spoke unintelligibly and often stuttered. Nevertheless, I did not let it prevent me from auditioning for my high school’s theater productions. I spent a lot of time practicing my monologue for auditions; and discovered that when I was reciting from a script I had memorized, I was able to speak completely fluently as I was putting all of my focus on how I was speaking rather than what I was saying. I introduced myself to the theater teacher; who later told me that he initially was hesitant to cast me in a speaking part because of my speech disorder; but then when he heard me read from the script at auditions, he was so impressed that he gave me a significant speaking part.

I was quite nervous at first; but he worked with me to make me feel at ease and perform my role with an acting ability that I hadn’t even known I possessed before. On the opening night of the play, the audience was fascinated by my performance. People couldn’t believe that this was the same girl who used to stutter every time she opened her mouth; and I was showered with praises and admiration when I walked out into the lobby after the show. I felt like a Hollywood star, and it was the highlight of my high school experience. Today, I no longer have a speech impediment, and I believe that acting played a role (excuse the pun) in making my speech fluent.

Throughout my college and into my adult life; I have approached each new situation with the same determination and confidence that I had in high school when taking an advanced placement class, learning to dance on pointe, and acting in plays. I attended a highly selective college and graduated in four years with a GPA of 3.16.  I wrote for the college newspaper, led a student retreat where I gave a talk, participated in an outreach trip to the Bronx over spring break, took voice lessons, sang in the college chorus, performed in a musical theater production, was on the dance team, served on a committee to educate students about violence prevention and safety issues, and still managed to find plenty of time to socialize and make many wonderful friends that would last a lifetime. Today, I am married, have been employed at the Federation for Children for Special Needs in a variety of roles for over a decade, and own a home. I also have written a book (pending publishing) about my experiences growing up with ADHD, and have started writing a fictional novel. In addition, I sing in my church’s choir every Sunday, have taught myself to play guitar, and have written some original songs. I am also very passionate about politics and this past fall I volunteered on a campaign to get a candidate elected.

 I didn’t get this far by playing it safe. Had I not taken the risks; I never would have been able to achieve all that I have. It certainly hasn’t been easy for me, but the results were well worth it. I hope that you can be inspired by my story and learn that you, too, are more than just a disability or a diagnosis. Don’t be discouraged just because you have a specific condition that presents challenges. Just like the song says, some things you cannot change, but until you try you’ll never know!

This is not to say that I have succeeded at everything I tried, or that I have completely surpassed all the limitations that my specific condition presents. In fact, you may be wondering, what happens when you try your best at something and discover that you aren’t able to overcome obstacles or master the skill? And are there times or situations when it’s best not to try something new or to give up at attempting? I will address these questions in the second part of this series. Stay tuned!

By Becky Rizoli

My "Challenging" Brother

My brother went in for an MRI a few weeks ago. As the nurse was sedating him, he announced that he had “three Mommys” - his birth mom (or “tummy mommy”), our Mom, and me. My brother is twelve years younger than I am; he was five when we adopted him, and he’s ten now. His unique characteristics, the ones which have him on an IEP, are fluid and have changed in the last five years. When my parents adopted my brother, his speech was severely under-developed due to neglect he had suffered while in the custody of the state. He had no problems with emotional connection, but he stuttered and cluttered, sometimes beyond comprehension. After two years with his speech therapist, my brother’s funny, sharp commentary came out in clean, rounded syllables. His consonants were distinct and his expressions purposeful.

As a military family, our status changed when we welcomed Bryce. The Air Force considers him an “exceptional dependent,” and because of this my father is unable to work on certain bases which can’t provide the care Bryce needs. Though Bryce has worked with a wonderful team of professionals, therapists and pediatricians and neurologists, my parents have fought an uphill battle for him at school. Although the faculty at Bryce’s public school know his ADHD diagnosis, we realized the lunch aides were ignorant to it when they demanded he sit with his head on the table and be quiet during lunch, something my brother simply cannot do. (Don’t worry, my dad busted into the main office heroically and demanded an explanation.)

Because of these difficulties, my mother has trouble deciding how much of my brother’s background should be public knowledge. Dealing with the school systems in Albuquerque is frustrating, as teachers are often unaware of the effect Bryce’s childhood trauma had on his brain. Without violating my brother’s privacy, I can explain that he spent the first five years of his life in fight-or-flight mode. Recent neurology studies show us extreme stress in toddlers can change the way they view and interact with the world. As that same neurologist told my mother, “He may not remember what happened to him as a baby, but his brain chemistry remembers.”

His pediatric neurologist called him “twice exceptional,” meaning his high IQ doesn’t match his ability to focus or reason with himself. He came to us with an ADHD diagnosis, but recent evaluations have doctors suspicious that he was misdiagnosed. His current pediatrician believes Bryce actually has Tourette’s Syndrome. It’s difficult to view my brother through the same objective, diagnosing lens I use when I’m mentoring kids with special needs. I know his verbal tics, the throat-clearing and low humming, are symptoms of his Tourette’s syndrome, but in my mind they’re part of his personality’s unique poetry. He breathes differently when he’s concentrating, and he makes odd-looking faces to release tension. His impulsiveness, I learned in college and in trauma training through the Federation, is a sign of his altered brain chemistry.

When my brother says he has three “Mommys,” he’s pointing out that his life defies social norms. He has a nuclear family who loves him intensely, and an extended family, four aunts and nine cousins, all of whom support him and make him feel permanently adored. He likes the boys in his SPED classroom, and he comprehends their special needs the way they incorporate his. Some of my brother’s friends can’t attend birthday parties because of the loud sounds, and another prefers to trick-or-treat during the day because of vision impairment. My brother simply works around it, the way we work around him wanting to play chess over and over as he grunts and squints over the board. We can’t go to quiet Italian restaurants, but Bryce likes Red Robin better anyway (and so do I). Bryce is a Webelos Scout, he’s in the Math Club, and he won First Place in the Pinewood Derby. He reads Goosebumps books and novels by Jerry Spinelli obsessively, holding up his little hand to keep us from talking to him when he’s finishing a chapter.

Bryce is stubborn and perceptive and sarcastic, and he’s “a challenge” the way reading a great book is a challenge. He’d probably like that comparison—he’d insist on being “Ghost Beach” or “Monster Blood IV.”

By Emily Gaudette

Maternal Love

“You are so crazy, why do you sacrifice in raising your child all by yourself, without her father and in a foreign country?” complain my friends. “Many families have a child like yours and live happily here, where they have their family and community to support their efforts.”

Such repetitive questions and phrases no longer affect me, for if they are not in my shoes, they can never understand WHY. My child did not meet any of her childhood milestones. She was seen by many different doctors at big hospitals, but no one could tell what was wrong, why she can’t talk at age three. No school would accept her, as she was a very active little girl who could never sit still at the table or follow a teacher’s directions. She hardly slept at night without being cradled in our arms. She could not chew or drink from a bottle or cup by herself at age three. Her second home in her first three years was her private doctor’s clinic, as she visited him every month. Yes, I could have support from our family members, but where does my child belong when so many places excluded her due to her deficits?

Culturally, people cannot accept the fact that a married woman left a child with special needs behind to go abroad for advanced study, and then brought the child to join her without her husband. Can’t you understand:  my life is my daughter’s life. Regardless of public rumor, my perspective of caring for a child with special needs cannot be explained simply by saying, but by doing - to prove that my child can learn and flourish like any other child.

Regardless of the difficulties of being alone in this faraway land, her smile and happiness bring me such strength and energy. Regardless of obstacles as I balance life and work, her daily tiny progress brightens my days. Regardless of challenges in navigating a complicated system of care, appropriate services that meet her needs are all that I care about. Can’t you see; she missed her interventions in her first five crucial years. It is said, “Better late than never.” I would feel even more guilty if I took away her only opportunity to grow.

It has been almost four years since my child received both medical and educational care in America. Challenge after challenge, but she has become a totally different girl. Now, she communicates using signs and her talker; I have come to believe that being nonverbal does not mean she has nothing to say. She signs, in response, “I love you” by crossing her arms in front of her chest when I say ”Me yeu con lam,” or “I love you” in Vietnamese. She hugs me tight when I am upset, as I believe that she is like any other child who does not want her mom to be upset, though she used to have no response to any emotion. She can now put on her pajamas and turn the light off herself before bedtime, as I believe she is grown up enough to do so. She can also help me to wash dishes after our meals.

These may seem to be small milestones to many of you, but for my child with multiple disabilities, all of them are really meaningful signs that she is blossoming.

Perspective from maternal love is that you love the whole child as it is her disability make her special.

By Oanh Bui,

A proud mother of Tiny with Dup. 15q and PDD-NOS.

Transitioning to College with ADHD

I recently came across an article online titled, “Teens With ADHD May Need Help Transitioning To College.”   As a person with ADHD, the title of the article seemed like an understatement to me.  I thought back on the first semester of my freshman year in college when I was overwhelmed with the many transitions in my life.              

I went on to read the article, which turned out to have some very helpful study tips for college freshmen with ADHD.  If you are a college student or a college-bound high school student with ADHD or similar disabilities, or the parent, teacher, or friend of one; I highly recommend reading this article.

In addition to the tips in the article, I also would recommend that teens with ADHD and similar disabilities begin their transition to college while they are still in high school. Transitions tend to be particularly difficult for people with ADHD, and the first semester in college is one of the biggest transitions in a person’s life.  Not only are college freshmen transitioning to a new school, new surroundings, and new classmates; but for most people, it’s also the first time they have ever lived away from their family and the home they have known their whole life.  While many freshmen are eager to move out and be independent, experiencing so many changes in a short time can be quite daunting for someone with ADHD. 

You can start preparing for college by educating yourself about your disability and the accommodations you will need to succeed in college. When you go to visit colleges, schedule an appointment to meet with someone in the campus office that provides accommodations to students with disabilities. Some colleges call it the Disability Services Office or the Center for Students with Disabilities; while other colleges offer these services from the Academic Dean’s office.  During this appointment, don’t let your parents do all the talking.  Your parents won’t be there to advocate for you in college, so use the time to practice self-advocacy. Tell the person at the college the name of your diagnosis and any accommodations you may need; and ask him or her about the services they provide for students with disabilities.  This will be good practice for when you are in college and need to ask professors for accommodations.

Speaking of which, don’t be shy about letting professors know that you have disabilities and need accommodations.  As the article stated, some students are hesitant to ask for the help they need because of the stigma surrounding ADHD.  However, if you don’t speak out, you will not get the services that you need and that you have a LEGAL RIGHT to obtain under the Americans with Disabilities Act (ADA).  The ADA also makes it illegal for a professor, teacher, or boss to discriminate against you for having ADHD or any other disability. So, don’t be afraid to speak out. The law is on your side!

Matt*, a young man with ADHD, agrees about the importance of reaching out to your professors. He offers the following advice to college students with learning issues, “Meet deadlines, meet the professors, and most of all reach out for help when you need it because no one will throw you a life line when you are drowning if you don't splash around a bit.” Although Matt did well in high school and made good grades, he struggled when he got to college without having his parents around to keep him on track. He eventually transferred to another college, where he graduated with honors and made the Dean’s List every semester. Matt is now a successful accountant in Washington, DC, where the readers of a local paper voted him as one of the area’s top businessmen.  He credits a large part of his success to recognizing that he needed help and not being afraid to ask for it.  

Should you disclose to your roommates and friends that you have ADHD? It is entirely up to you, of course, but remember that having ADHD is nothing to be ashamed of.  If you decide to be open about your diagnosis, you don’t need to say to every person you meet, “Hi, my name is _____ and I have ADHD!” but you may wish to tell your roommates and maybe a few close friends.  I recommend that you say something like, “Oh, just so you know, I have Attention Deficit Disorder, so if you ever catch me staring off into space or not paying attention to you, don’t be alarmed and don’t think I’m ignoring you on purpose.”

As a college freshman, I was reluctant at first to tell my peers about my ADHD. In retrospect, I regret that decision, because they often thought I was deliberately tuning them out or not paying attention to them, and they thought I was rude and didn't want anything to do with me.  As a result, I was very lonely for most of my first semester and didn't have many friends. When I finally gained the courage to tell my peers about having ADHD, I was pleasantly surprised to find out that no one shunned me or thought less of me.  Instead, they were grateful that I was honest about myself.    

Matt agrees about the importance of disclosing.  He says, “When I was young, I learned that it was nothing to be ashamed of so, throughout high school and even into college I sort of laughed it off and joked about it. That seemed to put others at ease.”

It is also important to attend every single class. Many incoming college freshman think that they will be able to get away with skipping classes without anyone noticing; as professors don’t take attendance like teachers do in high school. However, if you deliberately skip your classes, you will miss out on important information, you won’t learn anything, and when it comes time for the final exam, you’ll get an F. One reason why I was able to do well in college and graduate in four years was because I attended all my classes. The only time I skipped class was when I was too sick, and on those days I made sure to contact my professors or another student in the class to find out what I missed. 

Another factor that contributed to my success in college was living in substance free housing. I had to be cautious about consuming alcohol as it would have a negative interaction with my ADHD medication. If you are on similar medication, you might choose to live in a substance free dorm, with other people who have chosen to abstain from drinking or at least to only drink in moderation. This way, you will avoid peer pressure from your roommates and hall mates to drink.  Some people will tell you that drinking is part of the whole college experience, but it doesn't have to be. While I can’t say that I never partied in college, I only had one drink per night if I drank at all.  The residents of my dorm were allowed to attend parties in other dorms on campus; as long as we did not return to the building visibly intoxicated.

I sometimes wondered, “When I am older, will I look back on my college years and regret that I didn't party more?” Today, as I think back to my time as a college student, I can honestly say that I have no regrets. I never passed out or threw up from drinking too much, and I never woke up in a stranger’s bed wondering where I was. I never had to be sent to the hospital for alcohol poisoning, I never had a hangover, and I never did anything embarrassing like stripping in public or drunk-dialing an ex-boyfriend because I was intoxicated. Instead, I remember my college years as a time of personal, spiritual, and intellectual growth; when I made many wonderful friendships that have lasted to this day and will continue to last for the rest of our lives, and when I learned to accept myself and to stop being ashamed of my differences and to live life to the fullest.

My final piece of advice is to be patient and flexible. It takes time to get acclimated to new surroundings and new people. Don’t be concerned if it takes you a while to make new friends or feel at home. Get involved in activities on campus, and keep an open mind.  While my initial transition to college was very stressful, my college experience turned out to be among the most wonderful times of my life.

I hope that someday you can say the same.

*Names have been changed.

By Becky Rizoli

“These Are the Days of Miracle and Wonder” - Paul Simon

Make no mistake; November 2012 was an historic month. The momentous news began on Tuesday, November 6^th, and continued over the next several days but it had nothing to do with the election. On that day, my daughter Grace, a 25-year-old adult with Down syndrome, had her annual Individual Support Plan (ISP) Meeting. The meeting has been held each year since she entered the world of adult services and includes staff from the program she attends, a representative from the Massachusetts Department of Developmental Services (DDS), Grace, her mother and myself.

During the meeting, the Career Development Coordinator at her program mentioned the possibility of some leads coming together that could result in a job interview for Grace. We’d been hearing this for a few years so the news was met with cautious optimism at best.

By Thursday, the phone call came: Grace had a job interview scheduled for next Tuesday at a small local chain restaurant to become a lunchtime hostess. The schedule for the position would be 2-3 days per week, 2-3 hours per day. If you listen closely, you can hear the heavenly tones of a host of angels singing. The majority of you can’t hear it; but the few who can know exactly what I’m talking about.

On Friday of that week, while the rest of the country was either rejoicing at the election results, or wringing their hands over what might have been, I found myself driving to work almost being brought to tears thinking about the real possibility of Grace welcoming patrons to a restaurant and showing them to their table. I felt chills when I shared the news with a friend at work.

It’s been 25 years, 8 months, 25 days, and 13 hours since Grace was born. It’s been 25 years, 8 months, 25 days, 12 hours and 40 minutes that we’ve lived with the knowledge of Grace having Down syndrome. Twenty minutes after she was born, the pediatrician we had chosen from a Fort Myers, Florida Yellow Pages advised us that because of Down syndrome, Grace would never walk or talk, and would not live very far into her teenage years. We probably shouldn’t even take her home was his advice.

His three options, in order of his preferences, were 1) put her in an institution where she would be “well cared for”; 2)  put her up for adoption, “there are lots of loving foster parents out there who would accept her into their home,” (a very curious suggestion looking back at it); or 3) “take her home with you”.

We chose Door Number 3. Nostradamus he was not.

Grace not only walks and talks, she slices and dices. She can dance circles around most adults (tap, jazz, she is adept at many) and impresses everyone with her technological know-how, including programming apps on her iPhone5. She is active in a social club, plays sports year round, and has favorite TV shows. Curious about who came in 6^th in America’s Next Top Model Cycle 12? Grace knows.

What had been lacking in her life was purpose. I know her purpose in the grand sense; I found mine thanks to her. I mean she lacked her own purpose. All she really wanted was to get up in the morning and go someplace where she could be a contributing member of society. It was such a simple request, yet a very complicated challenge.

How big was this job interview news within our family? Her mother, stepmother and I were ABUZZ since we had heard. We coached Grace with tips on how to interview appropriately, bought nice clothes for the meeting, strategized about the transportation for the day. This was BIG.

The following Tuesday, November 13^th, she interviewed for the first real job of her adult life. A few days later Grace was hired to be the lunchtime hostess at the restaurant. Cue the angels again.

A week or so later, I picked Grace up at the end of her first day on the job. I asked how her day was. She began by describing all of the tasks for which she was responsible. After discussing her day, including the best part to her — the discount employee lunch menu — she sat back in her seat very contented. I sensed she was contemplating, replaying her first day on the job. After a few moments, she blurted out, “Today was AWESOME!”

There aren’t many things in life which excite Grace to the point of “awesome”. Accomplishing her goal of employment and earning her own paycheck clearly is one of them. Awesome indeed.

Woody Allen said, “80% of success is showing up.” Grace has been showing up for over 25 years. She is beyond ready to enjoy her next success. This is the chance of a lifetime for her. It’s funny how the seemingly simplest things in life can be the most profound.

 By John Sullivan

Kindness of Strangers

My 11 year old son Ryan has ASD. When he was younger, things were a lot harder. We’d usually hit a spot during the day when he’d turn into the Tazmanian Devil if something didn't go his way, and it would take most of the day to recover from that (for both of us).  As I look back, I feel grateful that The Taz doesn't show up as much as he use to and most days are good days.

However, on the morning of Ryan’s 11^th birthday, we were visited by the Taz at Dunkin' Donuts because they were out of Ryan’s favorite drink. It was a bad morning. I was trying to quickly remind Ryan about all of the coping skills he’s learned while he defiantly body surfed on the table and yelled out “YOU KNOW THAT’S THE ONLY DRINK I LIKE HERE! FOR CRYING OUT LOUD, MOM! I NEED MY DRINK!” We were getting all kinds of stares and I saw a few people shake their heads in disapproval because I knew we looked like a spoiled brat and a mother who had lost control. After a while, I physically dragged Ryan out of the store and wondered for the millionth time why we couldn't just do a simple task that others probably take for granted.

As we pulled out of the parking lot, a man who had been in the store pulled up next to me and motioned for me to put my window down. I could feel my blood pressure rise.  Against my better judgment, I put my window down. I was ready to hear this man tell me that I was a bad parent, and that Ryan was spoiled and that parents like me were what was wrong with this world. I was ready to take my anger out on this guy. I was going to let him have it. I was going to yell that I’ve been given more than I can handle and he should mind his own business and be grateful he can enter and exit a store without causing a scene. Oh, I was ready. Bring it, Mister.

Instead, the man said “Hey. It looks like you were having a hard time earlier and I just wanted to say hang in there.” I almost couldn’t process his sentence. Hard time. Hang in there. “Well, he has Autism, so …”, I stammered. This kind stranger answered with “Ah, my nephew does too. It’s really hard on my brother. Hang in there.” Hang in there. I couldn’t believe it. I wondered how many other people in the store weren’t judging, but were maybe feeling bad for us and wondering how they could help.

The man pulled away and I looked at Ryan and said “Let’s try this again” and we went back in. He used his coping skills to settle on water for his drink and thanks to the kindness of a stranger, Ryan and I had a nice morning. 

By Mary-Ellen Kramer