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