Saturday, December 28, 2013

A Full and Meaningful Life

"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." 

Sometimes I find it hard to balance my job and parenting a child with "disabilities" particularly given the fact that my son (Mikey) is on my "case load" at work. There are benefits and drawbacks to being both his mother and his "case manager"/"inclusion facilitator".  

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... 

It means when we create the social experiences that are just part of growing up we need to be aware of the small modifications we might need to make to help our children to cope with the over-stimulating environments or the fact that these experiences often require a way to interact and communicate with others. Sometime it means facilitating that. Sometimes it means teaching others around your child what your child is "saying".  Sometimes it means getting out of the way and letting them figure it out as kids seem to be better able to understand communication without words then we are at times. Sometimes it means providing them with a way to communicate what is needed. We don't avoid them because at first they might seem to be too much. We try them and watch for how our children respond as that is the way they will communicate to us what our next steps on the path could be...

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? 

"Better to have a short life that is full of what you like
doing than a long life spent in a miserable way."


  1. Beautiful post, Monica. These questions apply even to those diagnosed with mild/moderate disabilities. At times the question of what they can do becomes even more muddled as at times the abilities are so great, yet the challenges to communicate and participate can also seem equally great. I love your comment about the village. It is so true, reflecting upon my own experiences with my own daughter (HF ASD) it has become so abundantly clear at just how important the village has been in raising her and in achieving so much success. Yet, many of your questions posited in this post are so relevant.
    I believe that as a mom of a child with special needs, teaching in our school system, we have a great advantage in that we have a sensitivity to the whole child, the importance of all micro and macro systems surrounding that child and can bring that into the classroom.
    Well, I don't wish to dwell. Keep building those experiences!

  2. Thanks Brenda. I think perhaps even parents who have children without disabilities would say this applies to their children as well. It is why I put the short video at the end. Each of us spends our lives seeking our passion... the thing that sparks the core of who we are. I feel blessed every single day to have Mikey in my life as he was the catalyst to finding my personal meaning that has lead to my own "full and meaningful life". I pray every night that I can provide for him the window to his passion that same way that he has provided it for me.

    I hope that the writing is going well for you Brenda. Enjoy this last week of the holiday. Remember to take some time for you as all too soon we will be knee deep it in all again. Happy New Year!

  3. A glorious post, Monica. You have taken such care in examining the joys and challenges of nurturing special needs children.

    I wish you the best of luck in completing your Masters studies in neuroscience. You are protecting - and advocating on behalf of - our most precious resource.

    Mark D Swartz: Author, Columnist
    > Writing debut novel, involving Autism right-to-life
    > Follow my progress at