"Today I still have limitations, difficulties and deficits, but they do not define me. Instead they inform me. I can plan my life accordingly, ensuring supports, down time and accommodations so I can be the human being I want to be in this world. Today I have a full and meaningful life. I am content and happy and I am still just as autistic as I have always been."
Perhaps the biggest benefit is that it allows me to see his education and the education of all the students and families that I serve as being about more than just the years and hours that they will spend at school. It puts me in the position to analyze the questions around the purpose of education for students who will require some level of support for their entire lives. Is it the same as it is for any other child? Are there things we need to consider for this population that we do not need to consider for others?
I do not pretend to have all the answers. I don't think anyone does. It's why we need to engage and explore in the process of trying to define it all more clearly. We are living in exciting times as we are now able to gain insight from so many individuals that in the past we may not have been able to gain insight from as they had no way to communicate their perspectives to us. But there are many who can still not speak for themselves in conventionally defined ways. My son, and most of the students that I work with, have "limited verbal abilities". This means that we need to continually seek out ways to enhance his ability to communicate through the exploration of augmentative and alternative communication (AAC) but it also means that we have to be aware of all the things he is continually communicating in more "non-conventional" ways.
And when it comes to facilitating a self-determined life for him (the ultimate goal that all parents seek for their children), it means that our children may not be able to spontaneously tell us what they like, want or desire so we need to do the work to expose them to as much of the world as we can and then "listen" to their often non-verbal responses. What ignites their passion?
Sometimes providing those opportunities might even mean having to touch a snake...
And through it all, you stand back and look for ways to increase agency. You look for ways to not just provide the experience but to ensure your child can engage in the experience.
Over time, you keep looking for those things that really grab your child so that you can create more opportunities and experiences in the areas that other children would tell their parents they want to do. The snake was obviously not a hit so, much to my relief, we didn't do a whole lot more with reptiles as time has gone on. On the flip side, it has become clear to me that he loves to engage in the scientific process of figuring something out through trial and error so we didn't steer clear of everything science related.
This continuum of engagement helps me to better interpret what his interest level in things are. I do always remember though that he is an observer by nature and there will be times where he is "passive" and "obedient" for a long time even when it is something that is highly interesting to him.
passive -- obedient -- participatory -- inquisitive -- autonomous -- committed
I'm writing this post as a mom but it is reflective of what I believe about the education of the students that I work with. It matters when we work with students that we are clear on what we believe the purpose of their education to be. On the top of my blog I put the statement: "Exploring meaningful pathways to inclusive and personalized learning for students with complex learning differences and disabilities because education should prepare all students for a lifetime of learning."
Are we there? Do we see students with complex needs as candidates for being "lifelong learners"? How do we facilitate what it takes for them to be able to do that? I don't know the answers. I don't think any one person can. It's why having the village is so important. It's why natural supports are so important. It's why exploring and finding the things that will motivate someone to engage and learn is so important. I don't have any illusions that we will find all the answers. The question really is always going to be what is the next small thing that we can do that will bring us one step closer?