Mastery in Parenting a Special Needs Child

I don’t believe I’ve shared here that I’m a Certified Massage Therapist.  I have wanted to be of service to others for much of my life (even my past jobs show that trait:  horse stables, babysitting, and social work to name a few), but it wasn’t until my early thirties when I realized this calling was the one I was meant to answer.  So I went back to school, got my certificate and then opened my own massage business.

I also began assisting in the courses where I had attended school.  In exchange for my time, assistance and attention, I was able to experience the curriculum again from a different perspective, and gain more opportunities to exchange massage and bodywork.  To me, that was a win-win situation.  Never in a million years did I consider I might one day be teaching some of those same courses.  Yet, here I am.

The course I teach is called Business Practices, where we focus on the holistic nature of massage as a profession.  In case you don’t know, there is a lot more involved in being a massage therapist than simply knowing the names of bones and muscles and rubbing oil on the skin.  Business Practices includes not only the legal and ethical pieces needed to stay safe in our profession, but also the “soft” skills (such as communication) that are imperative to building trust and developing healthy relationships with our clients.

The first portion of this course focuses on the development of an individualized business/career plan for each student; the final portion, on job/interview strategies and preparation and, ultimately, each student’s Demo of Mastery presentation.  The Demo is a culmination of what each student has learned, as well as his/her process of growth and change.  And it’s one of my absolute favorite parts of the curriculum because it’s such a beautiful process to watch unfold.

Today, I had the opportunity to explore the concept of mastery with my class in preparation for Demos, as they are heading toward the end of this course and nearing graduation.  It’s always an interesting conversation to have, and I learn something different about myself every time I facilitate the discussion.  How cool is that?!  I’m paid to teach a course I’m passionate about and I get to reflect on my own growth and change every time I accompany my students down this path.  Once again, win-win!

One of the goals I strive for in teaching the way I do is to be as authentic and real-world-focused as possible.  Theories are fun to talk about and toss around, but I’m more of a hands-on, let’s-put-this-theory-into-practice-to-see-what-happens kind of gal.  (It’s not always a pretty sight, either; but I’d rather take a few lumps trying my hand at something than simply observing safely from the sidelines.)  I know our students have paid a good sum of money for their education, so I want to give them as much fullness as I can.  And part of that involves demonstrating to them what that authenticity looks like for me.  So, as my class is exploring this territory, I do the same for myself.  I think it’s only fair that I am willing to do anything I ask of them.

Well, today, I had one of those near-emotional “ah-ha!” moments myself, when I was reflecting on what I have mastered relating to being the mother of a child with special needs.  Believe it or not, I actually haven’t spent a lot of time reflecting on what we have come through in the past almost-seven years.  Most days, I’m too focused on being present with whatever is going on and/or getting through some difficult situations to really sit back and look at where we’ve been.

One of my colleagues has said to me on more than one occasion, “Have you ever just pretended you’re a helicopter and circled above your life for a moment?  Have you ever thought about what your life looks like to other people, as they hover around you and watch what you handle on a daily basis?”  Um...no, not very often.  Because going back to some of those places can be dark, scary, and/or painful and it’s not always a helpful thing to do.  I know there are lots of joys and celebrations, too, but there are a lot more emotions in the grief column of the past than most of the others combined.  Exploring the territory of one often brings up the other side, so it’s a mixed bag.  I have to be ready to deal with whatever comes forward when I open it up.

And I also believe that most parents of special-needs kids would do the same things I’ve done.  Another colleague tells me differently.  I can hear her voice echoing from a recent conversation that went something like this:

Me:  Well, I’m not doing anything that any other parent wouldn’t do.

Colleague:  Are you f’ing kidding me?!  There are a bunch of parents out there that wouldn’t put in the time and energy you have with what you’ve gone through with your kiddo.

Me:  Yes, they would.  What parent wouldn’t do all they could?!
Colleague:  A lot of them.  And I know some.  Trust me – what you’re doing is not what every other parent will do.

I was speechless.  I know that’s tough to imagine, but it’s true.

So, as my students were writing about their own mastery today, I decided I’d consider…just a teeny, tiny bit…what both colleagues told me, to see what I would put in the “mastery” column of my own life regarding parenting kiddo.  And I was humbled.  I didn’t have time to completely flesh it out there, so I have spent some time tonight writing about it.  I hope you don’t mind that I’m sharing it here; it’s helpful for me to acknowledge the things I am doing that are working well, and writing is the medium to which I’m called.  I’m sure there can be more added to the list, but I have three initial areas where I’ve reached a level of mastery in being a special-needs momma bull…

1. Advocacy
   

Kiddo can’t advocate for himself in the arenas where so many decisions have to be made:  medical care and educational needs.  I’m sure I’ll have more posts at some point about the numerous pieces involved in each of these areas.  For now, suffice it to say that I have no qualms whatsoever about voicing my concerns for what is best for him, researching options, and asking for what we need.

There are so many gray areas in both the medical and educational side of what kiddo needs that there isn’t necessarily a “right” way to proceed.  And the results of what we choose to (or not to) do can have a profound impact on the kiddo we experience at home, so it behooves me (us, actually; just speaking from my own voice) to make well-educated choices.  Sometimes, there is no “good” option and it’s a matter of which choice is the least problematic; however, I’m learning a lot about how to navigate the waters of the regular IEP meetings at school, approach our insurance company for much-needed therapies they won’t cover, and work through the chain of command involved in seeing the specialists here in GR.  (More to come on this one later.)

2. Clarifying questions

This complements the above.  Advocating and requesting action can only be handled when the necessary questions have been asked; and, sometimes, the answers aren’t pleasant or easy to stomach.  But I’m getting better at handling those tough conversations.  I’ve always known I’m a give-me-the-facts-please kind of gal, so I will ask until I am satisfied I have the information I need to proceed.  I know this has ticked off more than a few people (in both the school and medical settings), but you know what?  I really don’t give a damn!

I do my best to work cooperatively with anyone we need in our corner, and it serves me absolutely no purpose to antagonize the very people we may need to rely on.  However, that doesn’t mean that I just sit by quietly and let anything happen.  I know the power of the intention hubby and I have for kiddo’s growth and development (along with a great deal of prayers, love and light from so many of you) will only manifest if we keep asking what we need to ask.  Period.

3. Integration

I have learned how to put many different pieces of our family puzzle together, to try to find the best balance we can have as a family.  For us, this part involves a variety of modalities we use to support our physical, emotional, mental and spiritual self-care as individuals, parents, child, husband & wife, and a family.

And it spills over into how we do everything we do.  It involves a lot of flexibility and creativity to make the best of tough situations, and a boatload of perseverance to assure we put our own care at the top of the list, so we can care for our precious little one.

Some days, it feels like two steps forward and one step backward.  And recently, I ran across this quote from Robert Brault:  “Optimist: someone who figures that taking a step backward after taking a step forward is not a disaster, it's a cha-cha.”  Based on that logic, we certainly do a lot of dancing in this house!

I’m grateful for today’s experience to give me a new line of thought that feels like a balm to the wounds I’ve been nursing.  I know there is more ahead of us, so looking back at what I/we have already accomplished gives me energy for the path we’re still blazing ahead.  What I know about mastery, just like anything else in life, is that it’s a process, not a destination.  And the joy of mastery lies in the journey.