Trajectory Shift: Let’s Start a Revolution!
(A Parental Perspective)
If you are a parent of a child with disabilities, have you ever felt like no one understands them? In a world that often sees a person’s disability before it sees the person, do you desire for your child to be seen for “all” of who they are?
I am a parent of a child with significant and complex needs, including deafblindness. On paper, my child is daunting and intimidating to any educator who finds that he has landed in their classroom for the school year. I firmly believe that the best gift you can give a child with disabilities is the gift of high expectations. Low expectations yield low results. I am not willing to accept a mediocre outcome.
Up until my son’s entrance into high school, we encountered the same recycled situation time and time again. Half of every school year was lost to the steep learning curve of my son’s intricacies and complexities and nuances. Comfort levels were obtained in tiny baby steps if at all. Little to no progress was achieved. Soooo much instructional time was lost. Everything felt disjointed and any progress or momentum gained was seldom achieved. Very few people knew how to reach my son much less help him access his education. There was a severe lack of overall alignment and organization to his team of related service providers. In my opinion, he was extremely misunderstood.
As my son entered his transition (high school) stage of education, I recognized the clock was ticking and we had much work to do to make the most of his remaining school years. Somehow, we had to recalibrate and reframe his educational journey so that he could acquire all the necessary tools for his toolbox. We had to identify new strategies to implement and embrace the unconventional. I was willing and convicted to give anything a try!
When I was approached about conducting a person-centered planning session for my son, I jumped on the opportunity. My philosophy was nothing ventured nothing gained. As we were the first family in our county to pursue this endeavor, we were met with a great deal of skepticism. Over a month in advance, I sent out information to over 25 people who each knew my son in a unique way. Although I knew it was a lot to ask for 3-4 hours of everyone’s valuable time, I deeply believed in the possibilities it could create for my son. I was persistent yet diplomatic and deeply sincere in my outreach. Thankfully, everyone was intrigued, and we received an overwhelming response to attend either in person or by phone.
With 2 trained co-facilitators, the PCP session provided a discovery process about my son in a safe space for fruitful dialogue which enabled everyone to see my son in a different, more illuminating way. The ambiguity surrounding my son was cleared, and everyone gained a holistic sense of who he authentically is. Through revealing my son’s intense medical history and a long list of medical crises and interventions, every attendee gained a heightened sense of his current aptitudes. Background knowledge is critical to full understanding. Also, as we plowed through each MAP during the session we recognized areas where people’s efforts were working against each other and we pinpointed areas where people could collaborate in a more meaningful and integrated way. There were countless “a-ha” moments! There was clear powerfulness to the process.
As the session progressed, new ideas for IEP goals were discussed and crafted with precision. My son became the center of the bull’s eye. With laser focus, an action plan was created that incorporated tasks, ownerships, and an accountability timeline. For the first time, I didn’t feel disconnected from his school team, and I didn’t feel the weight of it all – there was an equitable distribution of responsibility resulting in shared ownership. The excitement in the room was tangible as new possibilities for my son prevailed. We had a plan, a real, detailed concrete, and definitive plan with clear concise steps. I felt more optimism about my son’s educational journey and his future on that day than on any other day leading up to that point. As the meeting concluded, I looked around the room and saw that the circle of committed people around my son had stretched. In those few hours, we had evolved from a sense of isolation to a sense of community. Also, in the corner of the room, I saw that the principal of my son’s school had chosen to sit in on the session, and she had tears streaming down her face. When I inquired about her tears, she exclaimed that every student in her school could benefit from what she just witnessed.
My son’s PCP session proved to be transformational and served as a remarkable cornerstone to his remaining educational transition to adulthood years. His team came together like a mighty army determined to claim victory. Everyone worked in a collaborative spirit and in beautiful harmony. Great results were obtained. We saw growth from everyone involved, but most especially in my son. As a result of the PCP session, my son’s potential was unlocked. They found the key! My son received a value-added education from that point on. The team identified what fostered joy in my son and used that as motivation to help him advance, and that elevated hope! We all need more of that! Personalized, high-quality strategies to support him to participate more fully in all facets of life were developed. Although everyone was forced to think in a different way, his team reached a new level of vitality and enhanced efficiency. I give huge credit today to his team for their willingness to be pioneers in my son’s development.
Today I consider myself an evangelist of what the PCP process can really do. For our son, the PCP process acted a fertilizing agent. He blossomed and thrived and developed targeted skill sets critically necessary for his future. What is important to our son and what is important for him drove everything we did. The future is something we create. Our children with disabilities have a right to ordinary dreams and believing that they can happen.
Personally, I would love to see a movement towards PCP sessions occurring for every student on the NC Deafblind Census. These sessions provide moments to learn from each other in the abstracts and they allow everyone to zoom in through the lens of our children with disabilities from a macro to a micro level while honoring their individuality. Nothing is going to change unless we change it!
My favorite quote is from Theodore Roosevelt – “Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty.” Would you be willing to consider planning a PCP session for your child? Let’s start a PCP revolution and change the trajectory of their outcomes!
#wecandohardthings
#therightkindofhard
~ Rowena Barker
Check out this great video of Jack working with his Intervener!