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.
Earlier this month my friend Tim Villegas, another educator who is dedicated to furthering systems of inclusion, put a post on FB where he asked the question “Why do you support inclusive education?
He received many, many terrific answers and I was thrilled that mine was deemed worthy of being one in that amazing list. Here is what I said:
So many reasons but let’s go with-we never know what someone is capable of until they have an opportunity to show it.
Oh, wait- how about because you can’t get to the same place in The same way by taking a different path.
Or because we know that if we took the same person and filled their lives with enriching experiences they would be changed far beyond a life where they had none.
How many responses do I get?
And I left it at that. But I realized later, that though each of those answers was true- none of them captured the piece that keeps me going- the piece that reminds me, daily- that what is sometimes so incredibly hard, is not really a choice for me at all. Because we believe, as a family, that it is up to us to leave the world better than we found it.
To understand how this allows me to do that you would have to know that upon our post- natal diagnosis of Down syndrome for Sevi, I was lost. So incredibly lost. I looked down at this newborn baby, who my whole heart loved, and I could not see the any future of possibility, for him or for our family. I certainly was not in a head- space to be able to look beyond the tiny corner of the world where we existed.
And then time passed, and as it did I learned, and as I learned, I watched. I watched this baby who so many would judge by his face, and began to see those who didn’t. I saw those that looked a few moments longer than one would expect, and I didn’t see judgment, as often as I expected.
Instead, I began to see curiosity and I saw connection. And as he grew, and I learned and saw more, I came to realize, through a few chance interactions, that I will never know the reach of my son’s impact on the world.
Because I will never know of all those people who know him today, who may find themselves as a future parent, or a future sibling, or a future aunt, or uncle, or grandparent of a person with Down syndrome. I will never know which one of those who knows Sevi today, will be a future friend, or neighbor, or in a position to employ a person with Ds, whose perspective will be forever changed, for good, because they knew, truly knew Sevi, and realized that having Down syndrome does not define him.
To use his words- they will know that having Down syndrome is no big deal- once you understand it. Knowing him may change their perspective, and thus change not only their story, but the story for another future baby with Down syndrome, and that, is a future that I can get behind, each and every day.
People with Down syndrome often (and by often, I mean almost always) experience challenges with their fine motor development at some time in their life. For some this is more fleeting, and for others it is more of a long-term deal. Sevi has the long- term kind, and it affects everything he does, especially Sevi holding and effectively using something to write, draw, color, paint, pretty much anything that makes a mark on a page.
Because of this, Sevi has pretty much always avoided drawing because it is hard and his drawings don’t generally come out the way he wants them to. This is something he is acutely aware of, and something he wishes was different. 12-years of not being able to do something the way you want can have lasting effects on your belief that things could ever change.
But change it can, because, for some reason, and we may never know why, after a few sessions with his current Occupational Therapist, Sevi has begun to draw.
Mostly he is copying images his brothers draw but he also copied an elk from a coaster in the house, and then the cover of a Harry Potter Book, and was so proud of his end products.
He has colored in the past but drawing has never been an activity of choice to fill free time. Yet, after 12- years, he is building confidence, and the practice can only help him build skill.
His drawings are still far from what he wants them to look like, though he doesn’t seem deterred, and they may not look like much to someone else, but for me they are a prime example that it is never “game over” where learning is concerned.
Watching him, get enjoyment from something that has previously caused so much struggle, shows that the window can always open, no matter for how long it had been closed- sometimes it is just going to take a little bit of elbow grease and even more belief that it will.
Yesterday I was doing some gardening. As I harvested, and pruned, and cleared dry leaves, and otherwise received joy from a much- loved hobby, I realized how much gardening is like teaching and learning. What does gardening have to do with education, you ask? Let me tell you.
There was a plant that I was working on that needed a lot of attention. There were leaves to clear and shaping to be done. At one point I thought I had done all there was to do, but then I shifted my angle. And guess what? I realized there were things I missed, things that still needed my time and attention, and an opportunity to improve what I had thought had reached its peak.
As I reflected on this experience later in the day I realized just how many similarities there are to teaching and learning for and about our children with working memory challenges. For in gardening we often think we have “caught” every weed, cleared every leaf or harvested every ripe fruit.
In education we do the same- we often look at a student from only one angle and from that perspective we think we “know them”. Know their needs, their challenges, even their abilities and expected response levels. If given an opportunity to change our angle, though, our perspective can change and we may find the opportunity to realize things we missed- distractions to remove from the learning environment, new ways to embed supports, and an increase in expectations to be had, resulting in new growth we may not have expected.
As so many of us find ourselves in new territory with Virtual Learning, we could share our despair or we can put on those “gardening gloves”, know it is OK not to know, but not to keep from changing our angle. If we can keep the process of discovery open, we may not be where we thought we would be, but we may discover things beyond what would have been possible had things stayed the same. Happy gardening :)
In just 7- short days my kids will go back to school. Or at least they will be engaging in a version of school online. They are not ready, I am not ready, and to be honest, I am not certain my District is ready. But the truth is- no matter how much time we had, I am not sure any of us would be. Because at the heart of all of this is, what we have to remember is, that none of us have ever done this before.
Though the virtual nature of this is certainly still new, the “newness” factor is not. As the parent of a child with Down syndrome in a time when expectations for those with Ds is ever- changing, he has been the “first” do do may things in the communities we have lived. He has been the “first” more often than I wish were true. It used to bother me more than I could say, and though I still don’t love it, there is a certain freedom in being part of that first round of opportunity.
For when we are among the first, anything is possible. There had been no “we have tried that and we know it won’t work”. There are more questions than there are answers and there is truth to be found for those that are committed to finding it. There is no “hierarchy” of one person thinking they know better than another in terms of which path to take or how move love along that path as we go, based on their previous experience. There is only a destination, and there is an opportunity to discover the best way to get there, together.
For the first time, our system aligns with what we want for our kids. It is not about what you know, but about what you can learn, what you can discover, and what you are willing to try. It may not be in the location that we want it to happen, but the opportunity to be part of that discovery makes me want to jump right in, even if I have to take a deep breath and count to 10 before I do.
So this post may be a bit personal. I typically try to avoid that unless it has a professional slant but, for today, I am going to go with it.
I am an aspiring runner. No- let’s try that again- I am a runner. I have been a runner on- and- off for years.
About ten of them ago, I committed to training to run a ½ marathon. In the spirit of Growth Mindset- I have not yet gotten there. I have made many attempts, even getting within five weeks of completing my training.
There are many reasons why I have not yet gotten there, not the least of which is having two babies at separate times during this period does not make ½ marathon training the highest of priorities.
Fast forward to now, and I have been back in training for a few months, even though I have no idea when ½ marathons will be allowed again.
Due to current circumstances, I am running only in my community, which I have been doing for a few years now. As part of my favorite loop, there is a hill. This hill is not overly steep but it is long and it has been the crutch to my perfect run since I started. I have struggled with this hill, to the point that I have used not running up it to avoid a running work- out. I have allowed this hill to take joy from what is a joyful time for me. I have even told some of my friends that if you see what looks like it might be a person slumped on the sidewalk along this hill that they should assume it is me, and could they please stop and get me home.
But today, I ran, and as part of my run, I ran up this hill. And today, for some unknown reason the hill that I have consistently struggled with, was not intimidating, it was not hard to run, and as I ran I never once felt like I would falter. In fact, when I got to the top of the hill I had to look back over my shoulder to make sure I had really run where I thought I had.
I have no idea why this hill did not pose the challenge to me today that it has every day prior. I likely never will. But I am going to take it. I am going to take it and hold onto this victory with both hands.
And that is what I want for you….that you can find a victory, no matter what it is about, no matter who it is about, no matter its size, and no matter from where it came, and hold on with both hands, until the next one comes along.
As the end of the year is approaching (or for some it is already here) some of us are beginning to adjust, and others are pining for what we once knew (I know I have days when I am doing a bit of both) we are receiving more and more input about how we, as parents, should be responding to input from our Educators about supports for our kids. The purpose of this blog is not to judge or to make any indications about what should be happening, in its specific format- however I do have a few thoughts I would share.
What if this is it? What If instead of this being our new temporary- this is what there is going forward? What if we never actually can go back to the way we were before and this has forever changed the way we educate our children going forward, or at least acknowledge that this may be it for a longer than expected time or even, that it could happen again in the future.
I am not saying this to scare anyone (though I have to admit this thought has kept me up at night) but to give us an opportunity to think, to consider, and to collaborate.
What might happen if instead of treating Distance Learning, for those who struggle to learn, as a situation that can be solved by a band-aid that can be ripped off after a few weeks, we instead realized that we have to find a new “normal”.
What could we come up with if we put parents and educators together with this shared idea- that knowing what we know about this kiddo, that instead of a problem to solve we have an opportunity to create something amazing- individualized and supportive- transformative, even.
Because that is what true collaboration does- it transforms what we brought to the group into something new. When we offer our gifts and blend them with the gifts of others that we could not have previously seen- that is where the magic happens.
Can we take this “new to us all” situation and turn it into an opportunity to truly partner onto this new platform and acknowledge that we need the gifts of all, in order to go forward in a way that allows our struggling learners an opportunity to succeed.
So find your team- invite them to consider the long-term- bring your gifts- accept the gifts of others- and make magic happen.
How we respond to life is a choice, my friends, one of the few choices we may feel like we have so take hold, take charge, flip the script, choose how to respond, and go for it!!
For many of us, staying home, and schooling at home does not come naturally. There is a rather large learning curve that goes along with figuring out how to navigate a "new normal" way of daily life where kids are being educated at home by parents who did not choose to educate them at home. When you are supporting a student who is struggling to learn, this is even more the case.
So often I get asked the question- How do I know what to work on at home with my child who struggles to learn? My simple answer is: whatever it is that you are doing for students for whom learning may not be a challenge. Of course the details will look different, in many cases, but the overarching themes should be the same.
If you are supporting Language Arts for another student, then this student should be no different. If PE is on the agenda, then add it to everyone's schedule. If it is a mental health day then make it so for everyone.
Instead of taking time to analyze whether or not we should be focusing on this or that, let's, instead, take that precious time to focus on what is important:
It is not the what we want to cover, but how we make it accessible as an opportunity to show growth, over time, that needs our time, our attention, our creativity, and our support.
So- take the first step- streamline the "what" am I covering? and take that "saved" time to focus on the details that make this something worth focusing on, for all of our kids, especially those that struggle to learn.
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,