Growing Up with Down Syndrome #1: Jill Pearns, Special Education Advocate

This week, I spoke with Jill Pearns, who connects with the Down syndrome community as both a mother and accomplished professional advocate. Jill shared her experiences with her own son, J., as well as their pioneering of programs and ideas that created a better, more supportive environment for special needs students in the Cave Creek area. Beyond the events themselves, Jill's narrative shows us how much of a difference one person can make, and the meaning that holds for our communities. 

PD: “Ms. Pearns, thank you very much for joining me today to share your time and insights. So to start, I was hoping you could tell me a little bit about yourself, and your connection to special needs advocacy. What do you do?”

JP: “I'm the mother of three boys, and the eldest son has Down syndrome. Professionally, I am a Special Education Advocate/Consultant. In addition, I facilitate, run and organize a social-skill group for adults with intellectual and developmental disabilities.”

PD: “What is this group like, how often do they meet?”

JP: “The group consists of seven adults (1/2 male, 1/2 female) aged 22-32 who have transitioned out of high school. Our sessions are provided in various community-based settings and have been designed to foster growth in social, conversation and life skills. Our activities include: yoga, horse therapy, writing, reading, cooking, along with healthy nutrition and physical fitness. In addition, a unique business specific for this group has been created and their time is also spent in the designing and selling of their product.  The group meets every Tuesday and Thursday afternoon and they spend about 10 hours a week together.” 

PD: “So they all go pretty far back then, there's a lot of familiarity.” 

JP: “It actually began as a handpicked group that I started with my son, and some of his buddies that he has known since middle school.

PD: “So how old is your son now, and what has his experience has been like through the years?”

JP: “J. who is now 28, started his education at 2 different private schools. The first school, he attended preschool through kindergarten. The 2nd school he attended 1st through 3rd grade.  Neither of these schools had ever provided for a student with intellectual disabilities before J.   At that time, I wanted to give J full inclusion opportunities, so I elected to send him to those 2 schools which were in Scottsdale. By fourth grade, we moved our family to Cave Creek and I decided to have him go to the public school.

Cave Creek was a young, small district at the time, and didn't have a lot of (special education) programs available or created. They were, however, open, and willing to help implement them. As his mom I chose to actively advocate for positive change and I offered many suggestions to the district that included solutions.  Because of these efforts,  J. essentially became the pioneer for the future special education students in our district who followed him. He became a lot of firsts – the first special education student to be included in the regular ed classroom, the first to be water-boy for the football team, the first to be bat-boy for baseball...he was very active in theater and community activities. In addition, he had the honor of being voted homecoming king.”

PD: “So a good many long-term changes came directly from that involvement.”

JP:  "Looking back, I suppose I was really the first to ask for as well as implement change. Rather than sit back and complain what the district lacked, I decided to be proactive and try to create positive solutions. I helped foster a” best-buddies program” at the high school and I created a school district support group for parents who had children receiving special education services.   There were no sports activities for people who had disabilities to participate in, so my husband and I created an inclusive basketball team. Today, there are several Unified Special Olympic activities here in Cave Creek that offer a person who has disabilities a variety of sports to participate in. J. is currently participating in Unified Special Olympics Golf.”

PD: “So more on that, what kind of services and supports did these first experiences develop into? Can you tell me about some of these changes?”

JP: “Well, the district was perfectly willing to help facilitate and implement these changes, they just needed the know-how. They hadn't offered the things I was suggesting and they hadn't really thought that way before. For instance, I suggested that J. become a teen aid to our community preschool class (which was held on the high school campus).  Not only did he become the teen aid, but his OT designed a program specific for him so that he could be a yoga instructor to the pre-schoolers – the preschoolers loved him!  I was more than grateful that the district was very open to these new ideas.”

PD: "So were you continually involved after these programs' inception, or did they become self-sustaining, and kind of continue onwards?"

"J. essentially became the pioneer for the future special education students in our district who followed him. He became a lot of firsts..."

"J. essentially became the pioneer for the future special education students in our district who followed him. He became a lot of firsts..."

JP: “Oh, they did become self-sustaining, I didn't need to be directly involved forever afterwards. These programs continued, the actual Best Buddies program is now being followed, and as I previously mentioned, the district is now very active with Unified Special Olympics. In addition,  they have a good transition program.  So yes, I still provide advocacy support to families in Cave Creek (as I do for all districts in Maricopa County) ,  but I no longer take an active role in the actual Cave Creek district programs, and I haven’t for years. 

PD: “And this was true after the high school programs too?”

JP: "I was actually involved in his transition program as I took it upon myself to find J his first job. I did this by taking heed of J’s interest and skill levels and then used my connections of who I knew in the community.  Fortunately, I was able to find J. a job that was a good fit both for the employer and for J.. The other available jobs were typically on campus, J. was one of the first ones, to be trained off campus. The school’s transition coordinator trained him very well for it, so that was great. In fact, he's going to be having his 10-year anniversary this month at that same job! " 

PD: “That's excellent news, congratulations! So I understand many of these services can be scarce after high school, or might drop suddenly. Does that present significant impact, in your experience?” 

JP: “It really depends on the district and the supporting community.  Cave Creek, for instance, is phenomenal.  Our local Kiwanis chapter sponsors AKTION CLUB. This is a club that is for special education students who have transitioned out of high school. Club members get involved in community service and participate in social outings.  We have a non-profit learning center (Scully Learning Center)  that features an organic garden, chickens and goats, a ceramic studio, fully equipped kitchen and they too provide activities that promotes social and life skills for adults who have transitioned out of high school.

And then, on the other hand, many other districts and their supporting communities are really struggling, and their transition programs are disappointing, especially for adults over 22.

Unfortunately from my experience in representing hundreds of families with my advocacy work, I have found that there are many folks who transition out of high school who are sitting at home with no program to go to or job to attend.  And many of them are higher functioning. There are many reasons for this – the higher functioning adult usually doesn’t qualify for DDD services.  In addition, they often struggle with appropriate behavior and social skills which is critical for successful employment. Transportation also is an issue, because many parents can’t get their child to and from work or other activities." 

PD: “So for that transition, you find life skills and behavioral aspects are pretty essential. Is this something you think should be emphasized more?”

JP: “Definitely. Schools have a big role, but during transition especially, the parents' role becomes necessary and vital. I think more often than not, parents rely too heavily on the schools to find the (participants) their job, as well as to teach their child all the necessary skills.   Parents have to understand that they play a critical role. I highly recommend that parents look at volunteer opportunities that their child can participate in.  Through volunteering their child can learn and develop skills that could help them to procure a job in the future. Volunteering also gives one a sense of purpose and importance as well as helps to build one’s self esteem too.  With my suggestion, J. was trained to be the altar boy at our church –  he even had to serve for Christmas Eve – which is huge service (no room for mistakes or inappropriate behavior in that setting).  He volunteered his position of yoga instructor to the preschools for over 5 years.  In this role, J. was highly revered by the preschoolers and it gave him a great sense of purpose.

"...the specific goals our transitioned adults should aspire to have are adaptability, flexibility, socially appropriate behavior, and sense of purpose. In order to feel good about themselves, everyone has to have a sense of purpose."

"...the specific goals our transitioned adults should aspire to have are adaptability, flexibility, socially appropriate behavior, and sense of purpose. In order to feel good about themselves, everyone has to have a sense of purpose."

I also encourage parents to involve their child in extra-curricular activities that emphasize their child’s strengths and interests.  My son J. loved performing arts, so I put him in countless theater performances – these were big productions, he couldn’t participate in them if he wasn’t socially appropriate. Through performing arts he had additional opportunities to learn how to behave, how to perform, and how to interact, all the while doing something that interested him and that built his self-esteem.  While J.  may function a bit lower intellectually, today he is able to lead a very full and active life in a variety of settings and circumstances, because he's very socially appropriate." 

PD: “What do you think is the most important aspect of life to maintain, into the adult years?”

JP: "My son does well with routine and structure.  He knows how to follow a calendar, and this helps him to prepare himself for each day ahead. In following his calendar he knows what activities he has to look forward to as well as his expected responsibilities and he doesn’t have to rely on me as much to structure his day.   Because he relies on structure and routine, he also has had to be taught flexibility, because sometimes plans change and that’s hard for him when it does. I also suggest that our adults have a variety of experiences they can be active and participate in so that they can enjoy a more fulfilling life.   J goes to a day program twice a week ( that he enjoys attending with his peers and plus it gives me a much needed break ),   he worksat his job twice a week, he goes to the fitness center with his respite provider 3x a week, he attends my social skills group 2x a week and he goes to dinner with “ the guys” every Saturday night. He has a myriad of activities he participates in 6 days of the week. 

I also believe variety is important because each activity individually, wouldn’t be as enjoyable if that was the only activity J was able to participate in.  For example, his job could become quite mundane if that was the only activity he did all week, same with the day program etc.

In summary, (from my perspective) the specific goals our transitioned adults should aspire to have are adaptability, flexibility, socially appropriate behavior, and sense of purpose. In order to feel good about themselves, everyone has to have a sense of purpose."

PD: “So what are some best practices for helping promote keeping that sense of purpose strong?”

JP: "I work on sense of purpose during my social skills group sessions in several ways… During our horse therapy sessions the participants of course spend time riding the horse, but in turn they also do important ground work which includes – cleaning the stalls, grooming the horse, cleaning and filling the water barrels, feeding the horse etc.  We discuss that the horse provides a wonderful riding experience for them, but in turn they are important to the horse because they help take care of him.

The participants of my group function at different intellectual levels, I noticed one of my participants shutting down during a reading session because he couldn’t read as well as some of the others.  At that moment I stopped the group and we had a round table discussion where everyone went around the table and discussed their individual strength, (everyone had a different strength).  We then went around the table and discussed something that each individual might be challenged with.  In doing this activity, my participant who felt bad because he didn’t read as well as some of the others, felt much better because during the discussion it was recognized that he was one of the best horseback riders and that the best reader of the group was too scared to even sit on a horse. Because of this activity he felt comfortable to participate in the reading group.

I created our little business for this group so that they could make something with their own hands, sell it and earn money and of course this gives them a great sense of purpose.  They get excited to see that they are creating something that others want to buy. 

PD: “So stepping out to the big picture, from your whole experience – how do you think we're doing with inclusion and participation measures for these communities in Arizona? 

JP: “Well it’s been quite a journey for me. From my own personal experience I have looked at inclusion and how to go about it one year and one step at a time. In most circumstances J was the pioneer. In evolving and growing through this journey, I've gained a different take, from when I initially sought inclusion for my son.   Inclusion is important, but it has to be done appropriately and your child has to be able to function successfully (so that he can feel good about himself) in that inclusive environment. I believe in building good self-esteem, if your child doesn’t feel like he can keep up with his peers or the work in an inclusive environment then behaviors crop up, because that’s how children escape from doing work they don’t know how to do.  Inclusion means nothing if your child is sitting in the back of the room at separate table with an aide.  When J was young he was able to be more fully included, but as the academic disparity widened it became more challenging. When he hit high schoolI wanted him to be included in classes where he could feel successful,  not where he felt like he couldn’t contribute – He was successfulin courses such as drama and regular P.E and his regular peers where happy to interact with him in those settings.  Having him take Algebra or Biology just wouldn’t have made any sense because there was just too much of an intellectual disparity compared to his peers.”

PD: “Is there anything you think we could be doing better, or that you wish you saw? Anything that you're very glad for?”

JP: “I wouldn't need to be a Special Education Advocate/Consultant if things were going smooth – every district has their issues, but I do believe most Arizona schools are trying to do a good job considering the constraints of budgets, shortage of staff, expected curriculum etc.  Lots of details go into play, class sizes are getting bigger, and more expectations are being put on teachers, especially if they are including special education students in the regular education setting.  I present to pre-service teachers in the colleges and universities and I know firsthand that the regular education teacher receive, very little special education training.  We don’t want to “dump” special education students into classes without proper support or curriculum for them.  I feel the situation is improving and we've seen many success stories, but there are of course lots of challenges ahead.” 

 

Jill Pearns, Special Education Consultant/Advocate, has been positively collaborating with school teams across Arizona for over 25 years.  It is her passion to improve educational programs for children and young adults with disabilities. Believing that all children can enjoy success, Jill helps teams produce strength-based plans that have effective methodology and realistic but challenging, expectations and goals.

 As a parent of three boys, including a son with Down syndrome and a son who has ADHD, Jill has firsthand knowledge of what it takes to raise a child with a disability.  In addition she grew up with a brother who had Autism.

Jill is available for a variety of services including attendance at IEP and 504 meetings, mediation, consultation and classroom observation. She can be reached at 602-579-0631 jillpearns@cox.net

In a Different Key: The Story of Autism - A Review by Susan O'Bryan

In January of this year, "In a Different Key: The Story of Autism," by John Donvan and Caren Zucker, took the literary world by storm, receiving universal acclaim from major publications and becoming a New York Times bestseller. The book details the history of society's understanding of autism, and the misinformation and controversies surrounding that evolution. It is told from perspectives of civil rights, medical knowledge, and the personal tales of those affected.

This week, we connected with Susan O'Bryan, who reviews literature over a variety of topics. She offered us her insights on this critically-acclaimed foray into the story of autism:

 

“Autism.” 

It’s a word that frightens parents, educators and the public alike. Autism Spectrum Disorder (ASD), known for its wide range of symptoms (including Asperger’s), skills and levels of impairment, is usually diagnosed at an early age, but too frequently the complex brain development disorder is misunderstood or overlooked. It’s a mental health challenge that seems to be on the increase, though its origin specifics are still largely unknown.

Authors John Donvan and Caren Zucker hope to erase misconceptions with their book, “In a Different Key: The Story of Autism.” The history of the often-misunderstood condition chronicles the struggles – and successes - of Donald Triplett, born in 1933, in Forest, MS. Nearly 75 years ago, Triplett was the first person to be diagnosed with autism.

Growing up in rural Mississippi, Donald was a child who used people’s names to describe colors, who never cried and who craved sameness, routine and arrangement. Everyone agree he was “not normal.” First institutionalized in 1937 at the Preventorium in Sanatorium, MS, when he was less than 4 years old, Donald’s family took him away in 1938, citing that the place was doing more harm than good.

Beamon and Mary Triplett were among the first to argue for answers, finally finding what they needed in Dr. Leo Kanner, a child psychiatrist at Johns Hopkins in Baltimore, MD.  In 1942, with the diagnosis of “infantile autism” in hand, the Tripletts – and so many more to come - were able to begin their fight for their children’s civil rights, including opportunities for education, socialization and more. 

In their comprehensive history of autism (a nearly 700 page book), Donvan and Zucker recognize the achievements of more of those who have brought change. Mothers such as Ruth Sullivan who fought against the idea that unloving “refrigerator mothers” were to blame for their children’s behaviors. Fathers who pushed for scientific research. Lawyers like Tom Gilhool, who took the right to education into the courts. And those with autism, such as Temple Grandin, Pete Gerhardt, Connie and Harvey Lapin, and others who helped shed light on what it means to be autistic.

The authors know of what they speak. Zucker has a son with autism, and Donvan’s wife has a brother profoundly affected by autism. The authors wrote that a 2013 study shows that about 50,000 teens with autism turned 18 that year. “This suggests that we might see half a million people joining the adult autistic population by 2023.” According to Autism Speaks (www.autismspeaks.org), autism now affects one in 68 children and is one of the fastest growing developmental disorders in the United States.

As the book points out, progress, slow as it might, has been made. Opportunities never dreamed possible are now available for those with autism. For example, Donald Triplett earned a degree in French from Millsaps College, worked at his family’s bank and regularly plays golf. He’s surrounding by a growing community – locally and worldwide - that understands that autism in itself creates differences, but not always disabilities. 

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Susan O'Bryan lives in Clinton, MS, and runs a book review website that examines subjects like family, sports, and life itself through the lens of creative works. As she says: “Family and friends are my passions. Writing and reading are my pleasures. As for the rest, I am still a work in progress.” 

 

One Step Employee Spotlight — Connie Kelley, HR Coordinator

Last week, we sat down with Connie Kelley, Human Resources Coordinator and long-time member of the One Step Beyond family. Connie has seen and carried out the mission of OSBI in a variety of roles in her time here, giving her a rich perspective in this field. She shared some of her experiences with us in this recent interview:

“So let’s start at the start — where does the story behind Connie Kelley begin? How did you become involved with OSBI?”

CK: “As far as this company goes, I came here as a driver a long time ago and worked my way through. I started just a little over three years now, working through the DTA’s part-time and driving part-time. Eventually I got a chance to come in to HR for a little while."

“Can you tell us more about what you do now? What goes into that process?”

CK: “My work is a very important part of this organization because we have to have certified people who can come in and do this job, and not just anyone can come in and get certified. You have to be a very special person. So, my job is to make sure we’re all in line with everything, get everybody hired, process all the paperwork.

I truly love working with the members, but I love HR just equally as much. It is so much more than I ever thought. I never thought I would ever like this. But, it’s great and I love it.”

"How would you describe your experiences in this field, and with OSBI in particular?"

CK: "I love the people, the staff, the members, it’s just really a great place. I would never trade this job for anything. It’s a blessing to get to come here and serve this population. It’s not a job. It’s a passion. It’s not just anything that anybody can do. You have to have that drive and that desire to do that. As far as One Step Beyond…it is so different than any other place around. I mean there are places that are trying to emulate us, but they’re just not there."

"They didn’t go shopping and they didn’t have jobs. Now, we’re getting them out as much as we can and we’re getting them integrated. They have a lot to offer."

"They didn’t go shopping and they didn’t have jobs. Now, we’re getting them out as much as we can and we’re getting them integrated. They have a lot to offer."

"Could you tell us a little more about that  — the differences, I mean."

CK: "They don’t have what we have. The ability to teach classes, change classes and keep the interest, and to keep the focus of the members. As we know, these members don’t always have the strongest sense of focus, and our job is to keep them in line with what we’re trying to teach them. And our members go home, to parents, and they say “Guess what we learned today?! Guess what we’re going to talk about tomorrow?” You know, they’re excited about it, they want more, more, more. And, we’re trying to provide that as much as we can."

"So what might the alternative be, with similar groups?"

CK: "Typically, there are a lot of businesses along that line that do not have that same mind set. They act more like day care facilities. The participants come in and they sit down, and they don’t get up and move around, they don’t change classes, they don’t practice art, or music, or dance, or have recitals. We have that. We offer opportunities for these individuals to get out into the public and to SHINE. Not only by showing off what they know or what they’ve learned, but to absorb things that are out there. They go out and get jobs. They go to these job sites and they work and they learn, and they become more adept to what’s going on and they do what they need to do to have those jobs."

"If someone were thinking about coming to work at One Step Beyond, what would you tell them?"

CK: "I’d tell them to call me. Call me and I can tell you exactly what you can do to improve your life by helping these individuals. It is so insightful working here. I think a lot of our staff members feel the same way I do — and I kind of think if you don’t feel exactly that way when you get there, it doesn’t take that long. The more time you spend with our individuals, the more you find they have to contribute.

Back in what I consider the old days, they were kept at home. They were THOSE people, and they weren’t allowed to go out in public, or go to the grocery store. They didn’t go shopping and they didn’t have jobs. Now, we’re getting them out as much as we can and we’re getting them integrated. They have a lot to offer. And, there’s very few people that you can’t teach. Very few. And, you just need to show them. Our members are here to grow and hone their life skills so we can make them as independent as we possibly can."

"Thank you so much for sharing about your time at One Step, Connie. Is there anything else you’d like to add?"

CK: "The only thing that I’d like to add that I kind of wish, on some level, that we were bigger because there’s so much out there that could be happening. You know there’s more. There more people that would like to be here. We have a great success rate. We have individuals come in on their shadow day, where they come in and see if they get to like it….and they all want to come here. Because, we’re great. We’re a loud and proud group and we’re not ashamed to admit it." 

On the Red Carpet

Many of our readers are familiar with our theater productions, which feature months of practice on part of our members in music, dance and acting. This event is one of the truest symbols of what One Step Beyond is about — our members practice and learn in a variety of fields in order to bring it all together in one grand show, whether that means a dramatic production or participating in public life.

Events like these tell us something about what it means to strive, to work towards something you care about, and then be able to share that with your family and friends. We understand this as one of the most fundamental ways that all people, regardless of ability level, connect with their communities. 

What we should talk about more often is the personal impact these experiences have for our participants. At the end of the day, our job is to bring our them opportunities for fulfillment and growth. So we spoke with a few of our participants and staff about this year’s show, Little Mermaid, and what that experience meant for them. Here's what they told us.

 

Ryan (Sebastian)

Ryan talked with us about how much he enjoyed playing Sebastian, and that he couldn’t wait for the next show. “The show, everyone enjoyed it, lots of laughs, [the best part] to me was to show everyone that people with disabilities can do whatever they want, without people judging them, they can act and sing all they want!”

 

Chelsea (Ursula)

Ursula2.jpg

Chelsea talked about how she loved the show, and believed that everyone did a great job. She commented on how she used to watch the movie, and how well everyone did making it work onstage. The part she liked the most was the costumes, and the makeup, which she thought the director did a great job on. When asked about the future, she said she will definitely want to talk part in future plays and musicals.

 

Kendra (Ariel)

“Being a part of the Little Mermaid” production was quite the experience! From the costumes, to the theatrical makeup, stage scenes, and most important my fellow actors and actresses. From all the funny times to where we laughed in between acts so hard our stomachs ached, to the moments we were ready to scream at each other from frustration. I would revisit every moment. I am forever grateful that I got to play the part of Ariel, I mean who doesn’t want to be a Mermaid/Disney Princess? I felt like in One Step’s special way I was on a Broadway Stage. To see everyone’s talents shine those two nights warmed my heart forever.”

 

Cory (Prince Eric)

Prince.jpg2.jpg

“...I will always remember being part of one of the biggest stage productions OSB has ever put together. Those two nights and the thirteen weeks before it really changed the way I performed onstage. When I first heard that I was going to play the coveted role of Prince Eric, I was excited yet getting a lead role like this would be tough. Even through it all, I made it look easy like the roles here I played before it at Theater Works .... Overall, my fifth experience with Theater Works was a spectacular one."

 

As related by Kristin Woosley, our Dance Coordinator: 

"As the dance choreographer this year, I have to admit, I feel extremely lucky to call this my job. What really makes the performance so amazing is everything that the audience doesn’t see. The months of rehearsal and the dedication to practices that the actors spend at the theater and at home. " She continued, " It’s a family affair, and it’s all hands on deck. The staff, the families and the most importantly the actors put so much energy into realizing the final shebang!"

Kristin also talked to several of our members about their experience:

Seana (Jellyfish): Seana talked about how she likes making people happy while they are enjoying the show, “people love to come watch us” she explained, “I love being funny.” 

Jennifer, another participant, noted “it was nice to watch this year” and added that “the costumes were wonderful.” 

Enter Shelby, “It’s exciting to be in front of an audience!” Shelby lit up as she described her experience in the play. 

 

Nicole also spectated this year, but sounds like she will be coming out for the next one. As Kristin reported, “She just can’t even wait to sign up for next year!”

Andi and Carrie: "Kendra E. was the best mermaid sister ever.” 

Casey (Infamous Dancing Seahorse): ”It just really makes me feel good about myself”

 

You may notice a common thread throughout these the conversations. All participants are excited for these programs to continue, and want to take active roles. Whether it’s Aladdin or Little Mermaid or a brand new story altogether, what we have is a lasting outlet for imagination and enthusiasm. We recognize these activities are important in a lot of ways, research describes how the arts help those with developmental disabilities in areas of memory, cognition and reinforced social skills, as well as a means to establish positive identity. Rather than only reading about it, we are able to see those benefits at the stageside.

We've learned that our participants love the spotlight — they want to sing, dance, tell stories, and yes, perhaps show off a little. It is our mission and privilege to keep giving them opportunities to do so. We hope to continue providing this part of the One Step experience for years to come. As you heard from our members, the show must go on. 

Why I Said Yes

I was recently asked why I had said "yes" to serving on the board of One Step Beyond. When I stopped to put my reasons into words, they sounded entirely personal, and absolutely subjective. But I suppose that isn't necessarily a bad thing when one is talking about helping adults with intellectual disabilities realize an increased quality of life, and ultimately a greater degree of happiness.

I have lived in the same community since its inception more than 31 years ago. When we built our house we had already adopted two children, and a third was in the bureaucratic wings, waiting for medical clearance to come home. We were excited about the prospects of a promising school system for our kids' education, and we were truly optimistic about being able to provide whatever was needed to get our children launched into their education. We were to eventually conclude that we had been sadly mistaken.

We learned that two of our three kids had significant learning disabilities. One boy was relegated to special education, and ultimately, years of marginalization and frustration because he didn't fit it. His social miseries far surpassed anything anybody inside or outside the family could remedy, and his family suffered right along with him. Attempts at "mainstreaming" him were miserable failures because of the extreme level of rejection and violence against the special ed population by regular students. I was perhaps too polite about some issues, and my attempts at cooperating with the "system" were ineffective. Regardless, I joined every committee I could find, and I was on a first name basis with school administrators, counselors, and teachers. Nothing helped, and nobody's good intentions prevailed.

My son has been out of school for many years, and is living independently in another state. I often wonder how his life would have been enhanced by the resources and support of an entity like One Step Beyond. I have no doubt that had it existed, OSB would have transformed both his immediate existence, and his entire future. Having a positive peer group and a welcoming place to be were never parts of his experience. OSB would have seemed like a miracle to a boy who seemed to belong nowhere.

So when asked, I said "yes" to furthering the efforts of One Step Beyond.  I want my long-time community to continue to evolve into a place where the term "diversity" includes people with many differences and abilities. I have never quit hoping for alternatives for parents who struggle for answers for children they know will grow into adults who may live years beyond the ones at home who love them. But most of all, I want other special needs community members to be spared what my son was not.

I am glad to be taking a seat at the table with the other OSB board members. There is no way I could have said "no."

Jody is a writer, storyteller, and content marketer. An award winning writer, Jody’s posts in social media are eagerly anticipated by her followers. Readers share Jody’s Facebook and blog posts because they are narratives about life. Next to hunger and thirst, one of our most basic human needs is storytelling, and nobody loves a good story more than Jody.

Jody is a writer, storyteller, and content marketer. An award winning writer, Jody’s posts in social media are eagerly anticipated by her followers. Readers share Jody’s Facebook and blog posts because they are narratives about life. Next to hunger and thirst, one of our most basic human needs is storytelling, and nobody loves a good story more than Jody.

When Autism Ages Out of the School System

California’s day programs for adults with autism are underfunded and overcrowded. But with thousands of young people with developmental delays or disabilities about to reach the age at which they can no longer attend a public school, the problem is soon going to get much, much worse.

My daughter’s story is just one example of the limited options available for these young adults and the parents who care for them.

When Briana’s special education school abruptly closed in the fall, I was faced with the premature task of finding her a placement in an adult day program. Because she is just turning twenty-one, she would only have one more year of special education services under the IDEA act of 1990, which assures a free and appropriate public education to disabled students to age twenty-two. I had not heard great things about the options out there, primarily because my daughter has a severe form of autism that requires a high staff-to-student ratio just to keep her safe and on task.

Several months prior to this I had gotten a small head start by touring a residential and adult day program, in a bucolic setting among redwoods, hills and the quaint downtown streets of Marin County. The feeling I got upon walking through the door was happiness and inclusion. A music session was winding down and most participants were engaged. Several art classes were also going on concurrently, and that was just the beginning. A textile art center was abuzz with about 30 individuals busy at their looms, while another group was outdoors doing grounds work on the nearby garden. There was a residential hall and six group homes scattered about in neighboring towns where most of the clients reside. OK, I thought, this is a program I could see my Briana in. How do I sign her up?

Not so easy. There is not even a “waiting list” per se, and they really want to have clients that are more independent. Briana still needs help sometimes in the bathroom, and she needs a pair of eyeballs on her at all times due to her eloping and wandering tendencies. There really was no space for someone with such great needs.

So what else was out there? I began the search again, this time out of urgency due to Briana’s impending loss of school placement. Our social worker at the regional center, a state-funded agency that serves people with disabilities, loosely explained the structure of existing programs. There are behavioral programs in which staff members are trained to deal with severe behaviors, such as wandering, self-injury, aggression, and toileting needs. The staff-to-client ratios in these behavioral programs start at 1:3 – one staff person for every three clients — and if need be can be moved up to 1:2 and even 1:1. In other words, clients first have to try the 1:3 and fail, then try the 1:2 and fail to get a 1:1, instead of just asking for the 1:1 to begin with. The program I saw in Marin was non-behavioral, so the ratio is more like 1:6.

My daughter’s social worker set up more tours and I dutifully went to each one. The first one, another non-behavioral program, was quite the opposite of the Marin program. I saw 50-plus clients crowded into two run-down rooms, many in wheelchairs parked in front of a big-screen television. It was noisy and chaotic. There were some smiles, but I didn’t picture Briana there at all.

I asked the director how often the participants/clients got to go out in the community, and he said once a week, and with special arrangements by parents if you wanted activities like swimming. I couldn’t wait to get out of there, but the following two programs, which were behavioral, were not much better. They had greater staff-to-client ratio, but the clients almost never leave the building. One had a few “time out” rooms, what they described as one-to-one situations, and there was no outdoor space to utilize or enjoy.

Briana is outdoorsy, energetic, enthusiastic, and for the most part, happy. She has her down days just like all of us, but I want her to access the most the community has to offer. I was overwhelmed by a sense of sadness that felt like an open wound for weeks, even months later.

These programs, with some exceptions like the well-established one in Marin, are buckling under current conditions, and they are only going to get worse with the increasing number of adults like my daughter who are about to age out of the school setting.

The demand is leading some new programs to open up, but they are faced with trying to operate a business without failing. This usually means sub-optimal buildings leased out, or no building at all, and paying low wages to their staff.

The ratios of staff members to clients are controlled by reimbursement rates by the regional centers. The regional centers receive funding from the state Department of Developmental Services. The pay rates of some of these professionals are on par with what caregivers are paid, which is close to minimum wage. We pay the baristas that serve us our coffee or our pet-sitters more than we pay those important, compassionate people that care for our loved ones. Are we ok with this?

Time is needed to find a good day program for a disabled young adult because there are not enough options. The New York Times reports that 200,000 children with developmental delays will turn 21 or 22 in the next five years nationwide, overwhelming a system that is already inadequate for the current numbers. Legislative leaders need to know how bad the problem already is so that plans can be set forth to avoid this looming public crisis.

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Pam Raymond

Pam Raymond is the mother of a developmentally delayed young woman who just turned twenty-one. Her daughter currently attends One Step Beyond - California. Pam is a graduate of Project Leadership Training with Family Voices of California.

Pam Raymond is the mother of a developmentally delayed young woman who just turned twenty-one. Her daughter currently attends One Step Beyond - California. Pam is a graduate of Project Leadership Training with Family Voices of California.

The Long Road to Finding Answers for our Son

When you have your first child, you look forward to all the milestones! The first smile. The first steps. The first words. The first time they tell you "I love you." 

Before D turned two, we started to notice something wasn't right.

We brought our concerns to our pediatrician. She sent us to get his hearing checked, and then to a neurologist for an EEG. We were also told to look into speech therapy. After a lengthy speech evaluation, they determined, yes, he had a speech delay and needed therapy. We checked our insurance, and the only way they would cover therapy was if there was a *possibility* of an Autism diagnosis. Our pediatrician would not write a letter, because she couldn't put an Autism diagnosis anywhere near our son. We asked the neurologist if she thought it could be a possibility.

 "Absolutely not." 

We were new parents, with "experts" telling us everything was fine. Just a little speech delay.  So with no other course of action, we contacted the state's early intervention program. By the time we got through all the evaluations, he was going to be aging out of assistance and placed into the school system, which included a whole new set of evaluations.

D turned three in mid April, and a couple days later he entered a self-contained, special needs classroom for his speech delay. The following month, summer started. So for three months there was nothing. Just a child who needed help, and was getting nowhere. School started back up in the fall, and a couple months into the school year his school speech therapist talked to us, and told us we should look into taking him to a developmental pediatrician.

A developmental pediatrician!?

We had NO IDEA that those even existed. Why didn't our pediatrician suggest that, when we had more questions regarding his development? Why didn't the state program mention that to us? This was our first child, and developmental delays were not something we had ever been exposed to before.

A couple months before our son turned four, he was diagnosed with ASD.

I will admit, when I got that news it felt like a punch to the stomach. Here we were, trying to figure out what was going on for two years. TWO YEARS.  As soon as we got the diagnosis, his father began making calls and getting on wait lists. Within three months we had an ABA therapist in our home. But to this day it hurts my heart that he missed out on two years on speech therapy that could have benefitted him GREATLY. 

D still struggles with speech, but his speech is coming along more and more every day. It's amazing what a couple years of school and services has done for this child. 

As a parent, your intuition is your strongest ally. Trust it, dig harder and persevere. Your child deserves to be advocated for until they learn to do it for themselves.

-- 

Jennifer A. Street

 

Jennifer Street is the wife of Dallas Street, from Street Studios Video Production, and the mother of three, Dallas (6 yrs), Griffin (5 yrs), and Brinslee (10 months).  She loves coffee, and sometimes she enjoys doing other things while drinking coffee.  She has spent 94% (she did the math) of her life in Phoenix, Arizona, and 50% of that time loving coffee.

Jennifer Street is the wife of Dallas Street, from Street Studios Video Production, and the mother of three, Dallas (6 yrs), Griffin (5 yrs), and Brinslee (10 months).  She loves coffee, and sometimes she enjoys doing other things while drinking coffee.  She has spent 94% (she did the math) of her life in Phoenix, Arizona, and 50% of that time loving coffee.

 

Something New

Hello everyone! Paul Davis here, excited to be joining the team at One Step Beyond as the newest member of the Communications and Development staff. While I have been running around most of this week, I'm glad to have a moment now to properly introduce myself, and share about my background and first experiences here.

I'm joining you all as both a new hire and new resident of Arizona, having moved here about a month ago. I grew up in Missouri, where I studied political science as an undergraduate and went on to work at the state legislature. Over the years I have worked in public policy and community outreach for a diverse set of groups and communities. One thing many of the folks we worked with had in common was a need for real representation and support for their issues. I'm excited to now to be working for the empowerment and inclusion of those with Intellectual Disabilities, with an organization dedicated to helping them achieve their goals.

So I've been learning a lot this week – names, dates of interest, backgrounds, and all about what goes into the mission of One Step Beyond. In my tour of the facilities, I met with many of our enthusiastic and talented participants, as well as the professional staff guiding their efforts. I saw members engaged with courses in art, music, cooking, theater, fitness, and professional training, all while building their skills and confidence. While I already knew important work was being done here, I was blown away by the scope of opportunity. As I later had the privilege of sharing with city officials at a West Valley community event, the experiences offered here are diverse, rewarding, and unique.

I'm glad I had the moment to reflect, as this week reminded me of a quote I heard in passing. It was an older saying paraphrased by Robert Kennedy in his speeches, about the difference between seeing things as they are, and asking “why”, and dreaming of things that never were, and asking “why not?”. I know that many of the wonderful opportunities I see here, such as places for members to work, socialize, and grow as individuals, were probably not always available. I understand that there are still areas that cannot provide them. But as I've seen, that is no obstacle at all for people who are willing to take one step beyond those circumstances, whether that involves creating new and better services or defying limitations on one's own abilities. I'm deeply impressed with the work I've seen, and I look forward to being a part of it in days ahead.

-Paul Davis

 

Paul Davis is the Development and Communications Coordinator for One Step Beyond, Inc., and lives in the Phoenix area. Originally from Missouri, his background is in government and policy. When not in the office he is out enjoying the outdoors, and his interests include hiking, biking and guitar.

The Blessing and the Blended

By:  Girard Sagmiller

Girard and Sherri Sagmiller live with their family in Lee’s Summit, Mo, a suburb of Kansas City. They have two children, Savannah and Dakota. Dakota is a bright, outgoing, and energetic 10- year-old born with Down Syndrome. It is never easy for parents to learn that their child has Down Syndrome, and in Girard’s case he sought an explanation that was as well-researched as possible. The result of his journey was the production of a PBS documentary called Dakota’s Pride: A Father’s Search for Hope & Truth about Down Syndrome.

Girard is a people person and never meets strangers, only friends. He made several new friends during his project and felt compelled to document his conversations with other parents of children with Down Syndrome, medical experts, religious experts, and educators. The many conversations that quelled his fears were videotaped and eventually edited into a sensitive, educational and thought-provoking program that Girard shared freely with others and with PBS.

The following is a special excerpt from the video. Melissa Walline, a mother and advocate for Down Syndrome awareness, shared the following about her blessed and blended family:

“I think it’s important to preface that I am 13 years out from the day the doctor came in and said, ‘We think your child has Down Syndrome.’ So it was a…process. We went through the fear… which lead to education…which lead to empowerment…which led to embracing the situation…and now full-fledged advocacy.

We now have a 13-year-old with Down Syndrome and an opportunity presented itself to expand our family from 4 to 5, which lead to our adoption of Grace Walline. We always talk about the moment when the adoption agency called. They called and said, ‘We’ve got this child…she’s beautiful …she’s from a different culture…and she has Down Syndrome.’ We said ‘Korean…we don’t care what color she is…the fact that she has Down Syndrome we knew was doable, but the fact that she was a girl, after having 4 boys, was a blessing.’

Right now it is the number one requested special needs, which is a child with Down Syndrome. In fact, I don’t know if you read the email about the child that was available in New Orleans? I called to make sure the child was going to be adopted, and she said that from day one when that email went out, they had over 70 indications of interest on their website for the baby and they had to narrow it down to 30. The mom and dad that were choosing to put the baby up for adoption were thrilled; they could not believe that anyone would request this specific diagnosis.

I enjoy my typical children…those that are gifted…those that are average...and those that have Down Syndrome for their individuality. It makes for a more blended family.”

To see the actual footage of Melissa and Grace, visit https://www.youtube.com/watch?v=2SFOvodqSRE

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Author’s Bio: Girard Sagmiller was first known for his book “Dyslexia, My Life.” He devoted the early part of his career to advocacy issues on dyslexia—dispelling its myths and supporting others, who like him, struggled with the condition. When he and his wife Sherri had their second child, Dakota, they focused on providing the same public service as Sagmiller had offered to those with dyslexia, only this time it was about Down Syndrome, since Dakota received the diagnosis shortly after he was born. Sagmiller has published multiple books, a couple of films, and now an updated film version of Dakota’s Pride 2.0. 

The Connection between Down Syndrome and Alzheimer’s Disease

By Susan Kavanaugh

Week before last, I met a truly amazing neurologist: Dr. Marwan Sabbagh. 

Mimi, Joe, and Madison Rogers know him well and he was all they said he would be—brilliant, charismatic, and deeply committed to his work with Alzheimer’s and Memory Disorder. Dr. Sabbagh was speaking at a conference in Phoenix focused on the established connection between Down Syndrome and Alzheimer’s.  I thought I knew a few things, but I was in for a bundle of new information.

“Physicians have known about the connection between Down Syndrome and Alzheimer’s disease for 30 years, but only 2 years ago everyone came together to finally do some serous research on the matter,” Dr. Sabbagh noted, while presenting at the conference. “80% of Down Syndrome patients will get Alzheimer’s in later years. Since 1 in 700 live births results in a child with Down Syndrome diagnosis, we are looking at the largest group of pre-senile dementia in the world.”

Individuals born with Down Syndrome face a long list of potential physical challenges. The National Down Syndrome Society accounts for common medical conditions in this population:

  • Sensory Loss, ears and eyes
  • Hypothyroidism
  • Obstructive Sleep Apnea
  • Osteoarthritis
  • Cervical Spine abnormalities
  • Osteoporosis
  • Celiac Disease
  • Early onset Alzheimer’s Disease

My take away message was “Begin to watch for symptoms in your loved one’s behavior as early as 30 years of age.” It is during this time, according to Dr. Sabbagh, that PETs will begin to show the amyloid plaque build up so familiar to Alzheimer’s disease. Blood sugar metabolism will begin slowing down as well.

“Alzheimer’s symptoms can show up as early as 10-20 years in advance of the full onset. Sleep disturbances are an early indication, since interrupted sleep adds to amyloid production,” Dr. Sabbagh said.

According to the Desert Southwest Chapter of the Alzheimer’s Association as a caregiver for an adult with Down Syndrome, a few of the early symptoms that you might watch for also include:

  • Reduced interest in being sociable, conversing, or expressing thoughts
  • Decreased enthusiasm for usual activities
  • Decline in ability to pay attention
  • Sadness, fearfulness, or anxiety
  • Seizures that begin in adulthood

“The Alzheimer's Association Desert Southwest Chapter provides several free services to caregivers including a 24/7 information and referral helpline, and Family Care Consultation services to help families deal with current emotional and other resource needs and plan for future needs,” said Cynthia Vargo, Central Region Director for the Desert Southwest Chapter. “Education classes and workshops to learn about the disease and how to provide services for those affected, and support groups for any caregiver who is providing services for an individual with memory loss are also available.”

Louise Bowden, with the Down’s Syndrome Network Arizona, indicated they offered resources for parents as well. “We are planning a conference on ‘Aging with Down Syndrome’ in November. Anyone interested, can email http://info@DSNetworkAZ.org.

Dr. Marwan Sabbagh and his colleagues are interested in finding Down Syndrome individuals willing to participate in research trials. The goal is to find a way to better treat Alzheimer’s symptoms in Down Syndrome patients, and hopefully prevent the disease in all populations. 

We, at One Step Beyond Inc., serve a population that includes many young adults in potentially susceptible to Alzheimer’s Disease. As partners in caring for your loved ones we can note behavioral changes for you, but we suggest you speak to your physician for valid medical advice early on about this connection.

I, for one, am ever grateful for Dr. Sabbagh’s and his associates’ work. It is professionals such as him that have the capacity, resources, and passion to tackle such complex medical conditions. 

My younger brother had a stroke in September of ’15 and suffered significant memory disorder, from which he has now mostly recovered. I would have connected him with Dr. Sabbagh if I’d known of his reputation then. It is frightening to be concerned about any potential medical condition that may strike our loved ones. For this reason, I encourage you to talk to your circle of support and access the websites I’ve listed as resources. Knowledge is power.

Additional resources:National Task Group on Intellectual Disabilities and Dementia Practices, http://aadmd.org/ntg

My Thinker’s Not working: A National Strategy for Enabling Adults with Intellectual Disabilities affected by Dementia to Remain in their Community and Receive Quality Supports

http://aadmd.org/ntg/thinker

Barrow Neurological Institute 602.406.6262

Bio: 

Susan Kavanaugh, the Director of Development for One Step Beyond Inc., advocates on behalf of her close friends, Randa, Girard, and Susan, all parents of adult children with Down Syndrome. Susan co-authored a book with Girard, called “Dyslexia, My Life.” She has written for numerous national health publications over the past 30 years.

Let's Talk About Magic

We’re not talking about rabbit-from-a-hat parlor tricks. No one is advocating fireworks-fueled stunts in which the Grand Canyon disappears, or someone jumps out of a buried box.

Nope. We’re talking about the kind of magic that changes people's lives. It makes good things happen.

Real magic is hard. As Colin Powell once said, “A dream doesn't become reality through magic; it takes sweat, determination and hard work.”

And that’s what you can see every day at One Step Beyond, Inc., where good people join hands with the intellectually challenged to make music, create art, and energize better communities.

Our Personal Best

Our Personal Best

I feel so honored to be able to launch this new opportunity for communication about One Step Beyond and other topics so interesting to those of us who have Intellectual Challenges, are parents, guardians, siblings, or friends of someone who has Intellectual Challenges, or just have passion for helping individuals with intellectual challenges.