Through a variety of experiences I have come to believe that people can make anything look good on paper. The mere fact that it is written, does not guarantee that it represents what is actually occurring. I have learned this through perusing countless IEP’s and professional program flyers. No matter the document, whether these are well written or poorly written, have colorful photos or none at all- one thing is consistent: No matter what is written on that paper, a program is only as good as it is in reaching the unique needs of the individual which it serves.
I believe the same thing can be applied to research. If you have looked at my Bio, you know I am an a self- professed information junkie. I collect information, about all topics, and I love when it can be synthesized with what I already may know. In short, I have looked at a lot of research in my unending quest for information.
When we look back on the history of research pointing towards abilities or inabilities of people with Down syndrome and other working memory challenges, we have to acknowledge that the picture it paints is less than rosy, at times. The information that we come across may even prevent us from creating a foundation that allows us to believe in positive possibilities for our child’s or student’s future. Yet time after time, we have opportunities to come in contact with families, educators or individuals with disabilities themselves, who were able to overcome whatever it was that was written on paper and achieve goals that far surpass what anyone ever thought possible before they had an opportunity to do so.
To some extent, research is a product of what you believe you will find. Not that there are not opportunities where research has been conducted that find different than expected results. There are and they have to be acknowledged. However, research has its own systemic barriers, often delayed by many years from the onset of theory to publication, it cannot take into account all of the many factors that make a person who they are, that allow for them to experience the world, or to understand what is possible when the correct supports are in place.
Life happens quickly, change does not, and we do not really have time for the research to catch up. So I give you this challenge: We can’t ignore that research says what it says, and it will be interpreted the way it is interpreted, but what we can do is look what research gives us as a floor rather than a ceiling.
Instead of believing that the research shows us the enormity of what is possible, we can instead look at it as an entry point. When we look at research in this capacity it helps us to develop a platform of understanding towards what might be needed in order to reach the minimum of what might be possible, and allows us to continue to dream big and look forward to being part of new paradigms. If we look at research through this lens, that is something I can get behind, no matter how it is written.
Recently I had the opportunity to be part of a Person-centered Planning meeting for my son. When I think about this meeting I can tell you that it was one of the most powerful meetings of my life, thus far. Now- if you know me, you know I don’t say things like that lightly. If you do not know me yet, you will have to take me at my word, or ask someone who does. When I reflected on this life- changing opportunity I realized it for what it was, for my son, of course, but also for what it can mean for us all.
I have always lived with high expectations, for myself, for others, and certainly for my children, including my son with Down syndrome. So I always believed in his potential but, if I am truthful, I never was able to see it in laid out in front of me. The expectations for his future were there, but knowing how we were going to get there from where we are now was always a question. In short, I knew it would happen I just wasn’t sure how. That not knowing could lead to moments of uncertainty, to moments of feeling shaken from my beliefs, no matter how firm, to moments of doubt, and to moments filled with questions about whether or not we were on the right track.
What I learned from this experience is my version of the The Power of Purpose. Because what I realized is that when you start from where you are, it is easy to get sidetracked, to be shaken and to shift off track based on things that come along on the way. Life is full of unexpected distractions and when you don’t know where you are going, they can more easily get in the way of reaching the destination.
But when you have Purpose, when you know what your destination is, of course distractions in life are still going to happen, but when you have a path in front of you on which to focus, it can make it more difficult to be veered off the path that gets you to where you want to be.
You might momentarily stop and regroup, or take a pause, or you might decide to temporarily go in another direction to see how that works. All of that is part of life. But when you know what your endgame is you can consistently focus on the things that are working to help you get there, rather than starting and restarting, and starting and changing, and starting and restarting again. You have an actual opportunity to build momentum- to take clear strides towards reaching that Purpose, and that, in itself, has Power.
So it does not have to be a Person-centered Planning Meeting, though I now think they should occur not only for people with disabilities, but for ALL kids. If you have the opportunity to engage in one, I definitely encourage you to consider doing so. But if not, all is not lost- you can create your own. Take a moment to talk with trusted individuals who know about the person for whom you’re thinking, ask key questions about who this person is and what makes them unique. Take some time to figure out what the end game might be and come up with a plan.
The Power of taking this time now to figure out what a possible future might look like is incredibly empowering, not only for you but potentially for the person for whom you are doing this planning. Of course the endgame may change as time goes on, but this is true for all of us, and if it’s an intentional change then there’s absolutely nothing wrong with that.
But when it’s a change that happens from a shift off the path that stemmed a from a lack of direction, that can potentially serve as not only a barrier, but a roadblock to reaching the place on the path where a person’s Purpose lies. And that shift, my friends, is a missed opportunity, not only for the person, but for all of us who might benefit from the Power of what each of our Purposes are, and this robs each one of us of the future that could be.
Kristin Enriquez has dedicated her life's work to children with learning challenges and helping people work together to realize each student's potential. She is the proud mother of 4 children, one of which has Down syndrome. She is not an experienced blogger, or a professional website creator, but she does "tell it like it is," is a collector of facts, and loves sharing the amazing experiences and knowledge that have found her along the way,