~ Trying Out Band Class ~
Mikey, my son, is now 14.5 years old and we are fast approaching a time when we will be immersed in the world of adult planning and services. In the middle of a changing job, taking my masters and shifting practice related to how our social systems serve students and adults with disabilities, I find myself stepping back often and thinking about what my priorities for Mikey should be at this point. June is a time when these thoughts start to spin even more fully around in my head as it is a time when we need to start thinking about next school year and what it is going to look like. The Junes when Mikey has had a good school year are particularly hard because you know as a parent of a child that doesn't quite fit into the educational world that things can go either way in any given year. It's hard to see years like this year come to an end. Mikey has been a part of the Fine Arts Academy class at St. Mary's this year and everyone who knows him well has seen huge increases in social interaction skills, communication skills, personal management skills, comprehension of written and spoken word and independence. Most importantly, we have all seen a happy, outgoing teenager who is excited to go to school each morning. Through the course of this year, I, as a parent, have started to dream bigger dreams for him.
Back in January 2011, I wrote a post called "Educating Mikey". At that point, Mikey had been in a self-contained classroom setting for 3.5 years and we were talking/planning for him to move to a more inclusive setting that fall. Now, almost 2 years in to taking a more inclusive approach to his education, I thought it might be time to update that list because my dreams have expanded. The core of what I want for him is a high quality of life now and in the future and that has never really changed. What has changed is a better understanding of what that actually means. As a result of being in a fully inclusive setting in school, we can see what works and what barriers exist and we can slowly figure out how to use the things that work to overcome one barrier at a time. It shifts our focus from remediating when there is a hurdle to deeply investing in finding scaffolding technique, the support, the modification or the bypass strategy that will allow for access. I have come to a deeper understanding of how a focus on access increases participation and engagement and how an increase in participation and engagement results in personalized, relevant learning.
It's important for everyone to think about priorities, but it is even more important when you have a child that needs much more exposure and scaffolding and modifications to learn than other students do. You do not have the time to do it all even if you see the value in it all. You need to figure out what is most important and concentrate your primary effort there. It doesn't mean you let go of the other stuff, but it does mean you find a focus and see it through.
And so, I share my new list of what I believe will increase Mikey's quality of life both now and in the future and some thoughts on what that should mean in regards to his education at this point in his life...
Safety and Health: The statistics realted to abuse and neglect of adults with disabilities is overwhelming. It makes a parent want to move their child to an island away from all of society and just keep them safe. There is a fear of those who are different and of those who do not fit in to what we have invested years in to creating. We put so much energy in to trying to make people fit in to what is already there. Mental health is also a very real issue for those with disabilities and I have found myself frustrated many times at our lack of awareness or mental health services for students with complex needs. We can so easily magnify mental health challenges when we are inflexible in our approaches. I believe on a school level the best thing we can do to increase potential for safety and health in the future is to help these students experience the process of "positive niche construction" (Thomas Armstrong). We all need to understand that we have the ability to impact our environments and make them work for us as opposed to thinking in terms of always moving a child to a different environment. Finally, it is now a well known fact that the biggest indicator of safety and health for adults with disabilities is the size of their networks. On a school level, this puts building relationships and networks (and things like peer support strategies which will be a post in the near future) as a very high priority.
~ Warming Up for Dance Class ~
Looking to Peers for Diretion
Relationships: I've mentioned a lot about relationships but want to one more piece to this because the students on my caseload tend to those students that are "loved" by everyone. People say hi and give high fives and are always willing to "help". What I'm aiming for though is meaningful relationships that always have the potential for growth. It might be slow growth but the potentila is there. Again, on the school level, this means being diligent about that the adult role is when it comes to relationships. When can we facilitate more authentic relationships? How do we find common interestes that students can engage in togethere? How do we make sure we are not learning toward benevolence? What do we do to facilitate communication with those students who have limited communication abilities. I believe that relationships are of primary importance because I believe that all learning is social and it is in relationships that we can facilitate social and emotional development and learning.
Having Choice and Control: Some students (and adults) have very little control in their lives. Some people with disabilities rely on others to meet basic needs or for care or to compensate for the barriers that come with their disabilities. What tends to happen in these situations is that the right of autonomy is taken away from those individuals. We need to assist students to become the best self-adovocate that they can and we need to ensure that they are treated with respect and have valuable social roles. Its important to step back and look because many of the things we do that seem to help a student to gain independene in a skill are chipping away at their autonmy and creating a level of learned helplessness in their thinking pattern. This is perhaps the area that is the most challenging because we are often okay with giving supericial choices but are a bit more uncomfortable beyond that. It's also difficult with students with complex communication needs becausee it means seeing every behaviour as communication and engaging in a conversation (without words often) rather than engaging in a battle of wills to get the outcome that we believe is right in that situation. If we don't engage, we will never have the opportunity to find more appropriate ways to communicate. Then we shut a person down and see how learned helplessness touches the spirit of a person.
~ Popcorn Eating Contest ~
Meaningful Activities in Ordinary Places: I think we have come a long way in creating meaningful activities for those with disabilities. For me it is important we are always working towards having those activities in "ordinary" places. I would go one step further to say that sometimes I think we need alternative spaces to support a student's growth and development but I feel those spaces should never be restricted in regards to who accesses them. Junior High is working great for Mikey too as he is expanding his ability to adapt and transfer due to the fact that he goes to many different classrooms with many different teachers. In the past flexibility and transfer of skills has been a challenge. As scary as it is right now as a mom to think about next year and a whole new set of teachers and classrooms, I also know that this approach will help in building the skills that will be helpful to him as an adult. But it isn't just about classes. We need to embed him in the school and community culture. We have made some great steps forward this year. He attended his first Junior High dance and is actively particiapting in spirit days at school. There is a group of students that now seek him out at every lunch hour. That group does find a quieter, calmer space to be with him but eventually I believe he will feel safe enough to venture out in to the nosier, busier junior high lunch time environment. He has taken an increased interest in sports and I'm hoping next year to see him be part of at least one sports team. Its important that the array of what he experiences is not just contained to the classes he takes. It is also important that it not be so scripted that it last authenticity.
~ Independent Drawing for Project ~
Develop Abilities: Mikey has begun taking a real interest in art and craft projects this year. He is also showing an increased interset in engaging in the same processes and content that other students are engaging in. He does best when the activities he does are interactive and concrete. What is important to me is that in the middle of developing his abilities, we also come to understand the clearest, strongest path for him to access to learning. We are becoming increasingly aware of the diverse learning needs of students and the need to open up opportunities for multiple ways of processing, representing and engaging in curriculum objectives. It is only when we can figure out these strongest paths that we are able to support the development of abilities effectively and efficiently. This requires getting past that one-size-fits-all approach. Developing abilities is important but perhaps even more important is coming to understand those pathways that allow him the best access.
It's a learning process. I've always said it is about the journey not the destination but the more I move in to this, the more I see there really will never be a destination. We will always just be moving towards. We will always be looking for how we can facilitate just a little better quality of life. But this is how it is. When I think of my own learning and experimenting and the changes that I constantly make in my life, it really is no different. None of us are meant to stay stagnant. Life is about learning ang growing.