Doing vs. Being

“Don’t do.  Be” ~ Dove Chocolate

I’m writing this as I watch my son on the massage table this afternoon.  He is receiving in our Student Clinic, and I’m in a chair about six feet away from him; close enough to be present and catch his occasional glance for reassurance, yet far enough away that he has his own space and can receive without me getting in the way.

I’m amazed how often people express their surprise to me that kiddo receives massage and bodywork on a regular basis.  I’ll give you more of his history which led to the “why,” another time.  For now, I’ll just say that it’s become part of what we do for many reasons.  And it’s so familiar for us that it’s almost second nature.

I love that the quote above was in the Dove chocolate he opened on the way to our massages this afternoon, since that was our whole goal for the day – to just be.  Coincidence?  Of course not!

Part of my responsibility as a parent, like any parent, is to guide kiddo’s development so he is safe and can make good decisions.  Given his medical history and neurological challenges, our philosophy is that kiddo will best be able to do that once he is aware of his own body and how it functions, and realize he has the ability to choose his actions (and resulting consequences) as well as the opportunity to set good, healthy boundaries for touch.  I can't think of a better way to allow him the chance to do this than letting him get a massage.

I think our culture focuses so much on the milestones our kids reach  – how quickly can they talk, walk, read, write, throw a ball, and more (the list is endless) – that we don’t put nearly enough time and energy into helping them figure out how to just be.  That’s one of the biggest lessons I’ve learned as a massage therapist, a person and a mother, and why I continue to give him the time and space he needs to receive on the massage table.

I would consider my childhood a happy one overall.  My parents had a stable, loving marriage, we had a nice home to live in, plenty of food to eat, and clean clothes to wear.  We took family vacations and went camping, got involved in church activities, Girl Scouts and other service organizations and had lots of fun.  And while I’m grateful for all of those experiences that helped shape my character, somewhere along the way I internalized that I needed to do something to be of value.

Please don’t misunderstand – nobody told me that was the case.  I knew then (and still do now) that I was loved; still, for whatever reason, I allowed my own worth to be shaped by what I did, or could show others I could do.  “Do-do-do” pretty much was my motto at the time.  I will spare you my ridiculous, over-achiever resume here; suffice it to say that I balanced a lot and was proud of what I accomplished.  But I didn’t know a thing about just being or comprehend the value that comes with it.

It wasn’t until I was in massage school ten years ago that I began to understand how important that little, two-letter word really is.  And I’ll be the first to admit the concept challenged me to the core.  Thank goodness I had a healthy curiosity and willing spirit to explore how else my life might look by letting go of my need to do and, instead, focusing on my ability to be.

Never in a million years did I expect to be entrusted with a child who would require me to practice this concept hundreds of times each day, let alone try to help guide him and teach him how to do that for himself.  But that’s exactly where I am right now.  In retrospect, it makes sense that I needed to explore that concept for myself because I was being prepared to parent this special kiddo.  I just didn’t know it then.

That brings me back to his session.  I wish you could see it.  It’s such a beautiful sight.  The room is very quiet, even though there are almost a dozen sessions going on at the same time.  The lights are off and there is a nice amount of sunshine coming through the windows.  The background music is gentle, and everyone has found their own space of being.  Just sitting here, I am breathing and finding myself more relaxed than I’ve been all week.

And I’m having a full circle moment as I experience kiddo’s session today.  He hasn’t done anything to be of value or service, yet his very presence is a learning opportunity for anyone around him.  He is teaching others how to be present simply because he is on the table.  And I’m humbled to have the honor of experiencing the joy that comes with that.

By allowing him the opportunity to be himself and give his body the chance to fully relax, he is teaching others how to work with bodies, spirits and personalities different than their own.  We love his quirks – his wacky sense of humor, his unusually large vocabulary, his transparency of spirit, his creativity and love for the unusual – and we know they come with a number of challenging behaviors, too.  It’s all a part of the package.

Of course, he gets on my table at home a lot, too – but that’s completely different.  I’m his mom first and foremost, so that’s always a part of our relationship when he’s in my therapy room.  We’re connected in a way that I’ve never experienced before because we were a physical part of each other; and, though he lives outside of my body now, we are still connected.  It’s a gift to both of us when I stay in my role as mom, and allow someone else to nurture him so he has the space to just be.  I know I can hover and get in the way sometimes, so making the time where I step aside is so important for both of us.  And it’s a gift to me that there are others who support us in this manner.

As I watch him drift towards sleep, I find it tough to keep my tears at bay as I observe his precious little face.  He’s only ever fallen asleep on the table in Clinic once or twice.  And I know it’s because he trusts his therapist.  She is quiet and calm, and hasn’t been flustered by a single request he’s made – and he often makes many!  I can feel the compassion she has for my precious kiddo as she provides a nurturing touch.  She has given him the space he needs, and he is allowing himself to receive it.

What a precious gift to observe, because that is exactly what he needs today.  We’ve had a rough summer, and he’s already come through so much in his lifetime.  Yet, he has nothing to do and nowhere to go.  There are no responsibilities on his list -- no details to handle.  He isn’t worried about impressing anyone, or building a resume or hitting a certain milestone by a particular date.  He can just be…and he is.  And by watching him, I am, too.  My heart is full.

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.

Emergency Chocolate

Yes, there really is such a thing.  (Check out www.bloomsberryusa.com for options.  My personal favorite is the dark chocolate.)  And, oh, how I wish this had been my idea!  There are so many applications where this product is useful; heck – I can come up with a reason for it for just about any situation.  Brilliant concept, don'tcha think?

And I am shamelessly calling upon it today.  Just a piece, mind you (okay…two).  And it’s heaven.  I was the lucky recipient of this wonderful confection as part of a larger “Love Bucket” given to me, from my colleagues, on my birthday.  The concept of the Love Bucket is a post all in itself, and I want to do it justice, so I’ll give you those details another time.

Back to the present…

Kiddo started out doing well this morning.  We’ve been weaning him off the medication that was too heavy for his sensitive system and have had a couple of generally good, manageable days in terms of his behavior and interactions with us.  They usually come in spurts, followed by some regression, so I’m not surprised he’s having some challenges pulling himself together today.  It’s par for the course of who he is and how he operates.

Some days, it’s just such a heavy load.  Today, I’m doing a great job of remaining calm and quiet (the two most effective strategies in my parenting basket) and trying to finish the work I need to prep for class tomorrow.  And I’m enjoying my emergency chocolate.

The cause of the meltdown was because I held a boundary on his screen time.  He has a limit of how much computer, TV or Wii he can use/see/play each day, and he was just about done.  Of course, he wanted to jockey for more time and I didn’t give in, so that’s what set off WW III.

Because he has a tendency to tears things apart, we have made his room a safe space…for all of us.  There is nothing on the walls, his furniture is bolted to the wall (we don’t need any accidents on top of his meltdowns), his closet is empty (he did that one himself; I didn’t want to put the clothes back only to have the process repeated, so I left it empty) and we pull out a few choice items (blinds, CD player, and lamp) when he goes in to cool off.

Today, he got to the blinds ahead of me and tore them off but I got the other items out and tucked him safely inside.  He’s still screaming his little head off.  And there’s a part of me that finds joy in that.  Call me crazy, but to hear his screams after his rough start in life is almost satisfying at times.  The day after his birth, he had a lung hemorrhage that we were told probably meant he would die, and the doctors were puzzled that it healed “without explanation.”  I don’t need medical science to tell me how it healed; my God is bigger than any explanation.

So when he melts down like this and I’m in a good place energetically, I often chuckle to myself.  If his former pulmonologist could hear him now, I think she’d be laughing, too!  Right now, my windows are wide open and I make no apologies to my neighbors.  That’s just what it’s like in my house.  Besides…one of them has the most annoying dog who barks incessantly every time he goes outside.  I don’t see kiddo’s lung power as a worse offense than the yipper next door!

And now, just in the space of writing this and savoring the feel of luxurious, dark chocolate melting on my tongue, my house is quiet.  That means kiddo’s brain has come back “online” and he is probably taking some deep breaths.  That’s a really good thing.  It means I can go into his room in a few minutes and we can talk about what happened and determine our next steps.

The key is to wait just the right amount of time.  If I go in too quickly, he’ll just wind right up again; if I wait too long, he’ll nap out and that doesn’t bode well for bed time later.  It’s interesting to me that the amount of time it usually takes is the same amount of time as it takes for two squares of emergency chocolate to melt in my mouth.

I wonder if chocolatiers know just how much chocolate to use in their confections for exactly this reason.  Brilliant, don'tcha think?!

I Have No Words...

One of the joys of having a kiddo who is whip-smart is that he doesn’t forget.  Anything.  Seriously – his rote memory is out-of-this-world fantastic!  (His dynamic thinking, on the other hand, is something we’re still working to support.  More on that another time.)

His memory is fantastic when it comes to unnecessary details.  For example…

The color of the sweater his babysitter was wearing when he met her:  bright orange.

The number of times hubby has gotten lost while driving kiddo to horses:  twice (unless you count “that one time he went through Wayland” – then, it’s three times).

Whether the book says “and” or “to” (or whatever word), based on how it was read to him the first time.  (Please don’t err on the initial reading; it’s a booger to be edited all the time while reading when I’m not making mistakes, simply because he remembers what someone else said first.).

What toys were where in the doctor’s office, and which ones are missing or have been moved around.  (Perhaps they could hire him for a few hours each day to straighten it all out?).

The list goes on and on…

Because of this skill set, our conversations when in the car together often require me to be on my “A” game.  Most days, I feel like I’m somewhere between J and K, so I constantly have to scramble to answer the questions he poses.  Most of the time, I really don’t know what to say.

Earlier this year, we were coming home from an appointment and were stopped at a red light.  Kiddo really likes to watch the red hand flash, and predict when the walker will light up, and was asking me about the timing of the stoplight and crosswalk lights.  Our conversation went something like this:

Kiddo: Mom, do you see the red hand?

Me: Yes, I do.

K: Do you know that means stop?
Me: Yes. The person walking has to wait to cross the street.
K: When will it change?
Me: When the stoplight turns green, the little person will light up.

K: Why is he white?
Me: What?
K: The person. Why is he white?

Me (looking around for "the person" and getting concerned my son is aware of different skin tones).  What person?

K:  Ugh!  The one right there!  (Pointing to the crosswalk light.)

Me:  Umm...to let the walker know it's okay to go across the street.

K:  YES (getting exasperated) but why is it WHITE?!  If red means "stop" and green means "go," then why isn't the person GREEN?!  You know, he really should be GREEN, Mom!  Maybe you can have them fix that.

Yeah.  That's what I'm up against most of the time, and he won't be seven until next month.  How in the world can I argue with that logic?!  (Yes, mother, I know you're secretly laughing that I have a child who is a lot like me.  Damn Karma, anyway!)

I love the fact that, not only does he see a more sensible option, but he thinks I have the power to make it happen.  I have no words for that.

Necessary Respite

“Each person deserves a day away in which no problems are confronted, no solutions searched for.”  ~Maya Angelou

Sorry I missed you yesterday.  Well, except I’m kind of not sorry, too.  We had the opportunity to spend the day at the home of my oldest sister (“P”) for our annual extended family reunion for my mother’s side of the family.  (My father’s side will connect at the same site next weekend.)

And we needed that little day trip so much!  It’s been a tough summer – a long summer, full of discord – and it was great to focus on something besides the challenges we’re facing with kiddo, even if just for one day.

The weather was beautiful, the food plentiful and delicious, the drinks flowing freely, and the laughter contagious.  We played in the pool and had the chance for a pontoon ride on the lake.  We watched the kiddos swim like fish, yelling “Look, Mom!” as they splashed off the diving board, and celebrated when our kiddo (who still is reticent to swim) got in the shallow end of the pool without his floating vest.  (Hubby was right there with him, but, still – it was a great moment!)

We watched the older kids take turns on the boogie board, and took a break from water play to visit the neighbor’s horses and feed them some treats.  We shared stories and caught up on the latest events our kiddos are facing, marveling at how quickly they all are growing up.  We laughed and cried together and shared many, heartfelt hugs before parting ways.

It was fantastic to be in an environment that is known to us, because it means my bases are covered.  We know the lay of the land, have a “time out” room available (though we haven’t needed it so far), and Aunt P sets good house rules and boundaries for kiddo.  He really likes going there, so he’s usually pretty well-behaved.  (It helps that he knows Aunt P means business!)

Even better than knowing the details of our environment is the acceptance we feel when we are around family.  That, too, has been a tough road at times – helping those not with us on a daily basis understand exactly what is involved in raising a child with special needs.  But it has gotten much better over the years.

It’s great to go somewhere and know we’re set for a fun day, and we don’t have to face insensitive comments or unnecessary questions about what we’re experiencing.  I don’t mind being vulnerable and sharing what is on our plate, because I know nobody there is trying to fix anything.  And I’m grateful for that, because we’re not broken.  We’re just trying to navigate the waters as best we can, and we need time for fun and play.

I’m grateful we got that need fulfilled in spades yesterday.  My heart was full.

Silence is Golden

“The real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment. “ ~Dorothy Nevill

Indeed!  I’ve often wondered what makes people say trite, inane clichés when someone else is going through a difficult time.  It’s something that has bothered me for a long time, and has been highlighted by my experience in raising a child with special needs.

Recently, I posted about locking horns with my kiddo and the need for those observing to remain silent.  And lately, I’ve read many posts from friends (mostly on Facebook) about insensitive comments people have made regarding their grieving process, all in the name of being “helpful” or “kind.”

I understand people want to connect, offer support, show they care, or be the shoulder to cry on when others are grieving; I think it’s an admirable part of the human condition. And on the flip side, the hurt that can come from someone’s “helpful” words (no matter how well-intended they were) can be a load to bear.

Since we’ve been navigating these waters for almost seven years now, I thought it was time for my “Top Ten” List of Thoughts That Should Have Been Left Unsaid.  (Yes, these have all actually been directed to me/us at one time or another.)

Drum roll, please…

10.  What’s wrong with your kiddo?

Nothing.  This comment implies that something isn’t the way it “should” be.  And, damn, I hate it when someone “shoulds” all over me – especially when the question is asked in front of other children.

Kids’ experiences are shaped by the adults around them, so paying attention to what words are spoken or what actions are used is tantamount to their perception of what is acceptable behavior.  And everyone is different.  (Now there’s a word I’m okay with!)  By asking this question of us in front of other kids, they learn to judge others who aren’t like them.  That’s called prejudice.

Rather than asking this, I wish people would comment on something positive about our awesome kiddo…like his fantastic baby blues, quick wit, or incredible vocabulary.  He’s wonderfully engaging (especially with adults), so asking something that builds a connection rather than causes separation would be a better way to start.

If I feel like it, I actually may choose to share a little bit about his history, how he functions, and what is involved in our daily lives.  But I need to trust you first.  That takes time and space, and I’m the one who needs to determine if and when that happens.

9.  What happened to him?

I don’t even know where to begin with this one.  Do you really want the full story – the complete blow-by-blow?  Seriously – he and I are both in medical studies because the nature of what happened to us was so unusual and quick that it baffled the doctors.  Based on medical science, neither of us should be here.  But I don’t put all of my eggs in that basket.  I know our survival was 49% medical advancements and 51% Divine Intervention.  And that’s a pretty damn personal piece of our story to share.

I really don’t mind answering the question; I just take pause to wonder if people really want to know the details when they ask.  It is a loaded question, with many layers of emotions wrapped within.  So if you ask, you’d better be prepared to give me the space to answer, and be interested in hearing the answer.

8.  Oh…he’s just now doing (fill in the blank)?  This is often followed by a comparison of when the speaker’s kiddo mastered that behavior.

Yes, he just did it for the very first time.  And I’m okay with that.  As a matter of fact, I’m probably cheering and yelling with glee, and giving him as many high-fives as he’ll take before I embarrass him.  Because when he was born, we were told he might not live very long if at all; and, if he did, the road would be steep, tough and unpredictable.

So every victory – no matter how small or insignificant to anyone else – is a big, damn deal in our house.  And we celebrate them, with full-out, crazy-mom, “squee”-type glee.  I don’t care how long it takes; I just want to see him succeed.

I’m not going to belittle your child for doing something that isn’t on the timeline I’d choose, or what I think would be expected.  Each one is so different and I’m tired of them being compared.  I’m glad if your kid is brilliant at what s/he does; so is mine.  Our definitions of that term just look different.

7.  Have you tried…(fill in the blank)?

Yes.  Almost without a doubt.  Truly, we have exhausted the resources here in the Grand Rapids area, and we still know more about our kiddo and how he functions than most of the specialists we have seen.

We have read the books, studies, research, seen the videos, contacted specialists, tried different medications, therapies, strategies and more.  And we still are.

I love that you’re trying to be helpful, but having to explain the years of appointments, therapies, medications and more isn’t a fun process to someone who makes a comment just from a minute or two of being with us.  I’d rather save that one for when it is needed.

(Disclaimer:  Those close to me – family, friends and colleagues – this one doesn’t apply to you.  If you know the details of our story, or have hugged me while I was having a rough day, then you can ignore this one altogether.  I love that you send me articles, book suggestions, info on different types of bodywork and more.  Please don’t stop.  I know you’re not trying to fix anything, and your focus is on supporting us.  Thank you for that!)

6.  You just need to be more consistent with your discipline.

You may as well scratch your nails on the chalkboard, because that’s how this one comes across.  My husband and I are intelligent, loving, well-studied parents who have put in, literally, hundreds of hours in therapies, studies, research, doctor’s appointments and more, all in the hopes of finding a better balance for all of us.

The fact that anyone would make such a comment without knowing kiddo’s history (or ours, for that matter) nor watching us day in and day out just blows my mind.

Do we lose our cool at times?  Absolutely.  Do we sometimes cave.  You bet.  (I know we’re not alone on this one.)  And, overall, we’re continuing to put one foot in front of the other, communicating with each other the best we can hold boundaries together.  We call it “Tag-Team Parenting” and I’m blessed to have such a great hubby to partner with.

We’ve tried (and are still trying) it all…rewards, more consequences, sticker charts, special prizes, less time doing favorite activities, and more…and it doesn’t work for our kiddo the way it does for one who is considered neruo-typical.

5.  Will he ever be normal?

Oh, how I hate that word (and usually mentally bitch-slap whomever uttered it.  Sorry; that’s just how I roll).  What the heck is normal, anyway?  Do you mean neuro-typical?  Now that’s a term I can talk about:  what would be considered the range of behavior (in a general sense) that one might be able to see among a group of similarly-aged children in a controlled environment.  Is my terminology vague enough for you yet?  Good, because that’s what the term “normal” feels like in our household.

It’s not helpful.  Quit putting it in your “go to” list.

And please don’t ever (ever) use the “R” word – retarded – around me.  I’ll have a full post on that later.  Consider this a heads-up.

4.  Oh, you must be such a patient person!

No, I’m not.  I just blogged about this the other day (check out “Locking Horns with the Minotaur”).  I like things to go the way I want them to happen, and in the timing I think is best.  Do you know how much of that I usually get when it comes to kiddo’s challenges?  Nada.  And I’m making peace with that.

But don’t mistake my silence as some grand surplus of patience.  It may be; I do have the capacity to choose to be patient.  And I can also be quite stubborn.  In the case with some of kiddo’s meltdowns, the thought I hang onto (told to me by our favorite therapist, Dr. B.) is, “I’m a whole lot more stubborn than you are, kiddo.  You’re not going to win this one.”

3.  Oh, that’s nothing.  Be glad you’re not dealing with…(fill in the blank with whatever other disease, ailment, situation, etc. that comes to mind.) OR the variant…Oh, that’s nothing.  You should hear what happened to so-and-so.

Thanks for minimizing the challenges we face by assuming that someone else is dealing with something worse than what we’re going through.  They may, indeed, be dealing with horrific circumstances that I wouldn’t wish for myself.  But that doesn’t mean that what we’re dealing with is “less than” someone else’s burdens.  We all carry our loads differently.

Our experiences with kiddo have put families in our path who have dealt with losing children, therapies we’re grateful our child doesn’t need, and other challenges that I honestly don’t know how they handle.  Except I do.  Because the parents I know they would do anything to take away the challenges, pain and suffering their kiddos are facing, just like we would.  And it doesn’t help to compare what we each deal with.  Period.

2.  Oh, my kid(s) went through a phase just like it.  Don’t worry – it will pass.

Really?  So you have a crystal ball that is giving you this information as a certainty?  Oh, thank goodness – here I was, feeling all sorry for myself that this was the way it was going to be.

I’ve said it once, and will probably have to say it again for a long time:  cerebral palsy is not a phase!  Got it?!  Good.  Moving on…

1.  God doesn’t give you more than you can handle.

Well, then I sure wish He’d quit recognizing what a capable spirit I am and trusting me with so doggone much!  I’m exhausted most of the time and I think He constantly gives me more than I can handle so I don’t try to walk this journey alone.  I wish I could take away the challenges our kiddo is facing, but it’s just not that simple.  And I know the growth I am experiencing through this whole process wouldn’t have unfolded the same way had He given us a different child.  By the way…I don’t want a different child.  I love this one.  Challenging though he may be, this kiddo is the biggest blessing we have ever experienced.

So, how about holding us up in prayer instead?  Instead of pity, why not send some awesome mojo, wishes for patience, heart-felt love and kind thoughts our way?

Better yet – how about offering to give us some respite?  The time for us to recharge and reconnect with each other away from kiddo is something we strive to do on a regular basis because we need it.  We’ve beaten incredible odds to have survived the NICU experience and be co-parenting a child with special needs and keep our marriage strong.  (Notice I didn’t just say “together”; we have a healthy, loving relationship.)  The odds against us are staggering (do the research; truly, the divorce rate for NICU/special needs families is astronomical).

Any of these options would do more to lift me/us up than the thought that somehow, this is what I/we deserved.

So there you have it.  My list of what not to say.  And there are lots of things to say.  I’ll be posting about those another time.  In the meantime, if you’re not sure what to say, then don’t.  Or say exactly that:  “Wow – I just don’t know what to say.”  Then offer your ear.  Chances are, the other person is the one who wants to talk anyway.

Rays of Sunshine

“I have become my own version of an optimist.  If I can’t make it through one door, I’ll go through another door – or I’ll make a door.  Something terrific will come no matter how dark the present.”  ~ Sir Rabindranath Tagore

I saw this quote on a friend’s Facebook page yesterday, and it was timely for me.  Things have been extremely difficult this summer regarding kiddo’s neurological challenges and we feel like we’ve been operating in “crisis mode” for quite some time now.

(Actually, I feel like we’ve been operating in crisis mode since kiddo’s arrival, just one month shy of seven years ago today.  We’ve faced one challenge after another – infections, surgeries, near-death experiences, therapies, medications and more -- handling all of it from the day he came into this world because he’s our kiddo and we love him.  I’d like to think any parent would do the same thing for their kiddo.  I’m told by some that isn’t true, but more on that another time.) 

But not the past couple of days.  No…those have been unusually bright, sparkling gems – true rays of sunshine – of fun, laughter and silliness, and just enjoying each other’s company without the drama that has been present so often this summer.

While we’ve taken trips to the zoo, museums and local gardens this summer, the past couple of days were just “typical” days around home – handling tasks and regular therapy appointments, but interspersed with a good amount of interaction, a slew of questions and some fun discoveries.

Yesterday, kiddo and I were watching the Olympics together, and got to see the equestrian individual jumping finals.  If you know me, this will come as no surprise, since I was born with the “horse crazy” gene.  Truly, I would have traded anything as a child to have my own horse; alas, we lived in the city and it wasn’t meant to be.  So I attended horse camps and worked a few summers for a friend who had horses.  If you gave me an opportunity to be around those gentle giants, I’d jump on it – and them.  Still will, and do!

Kiddo started riding horses a couple of years ago, but for different reasons.  We were given a scholarship to the local YMCA camp for him to receive a series of hippotherapy sessions – speech therapy on horseback.  Can you believe this horse-crazy gal had never heard of such a thing?!  (You can check out http://www.americanhippotherapyassociation.org/ for more information.)

Kiddo didn’t want any part of it initially; he is a slight child and even the smaller horse assigned to him looked ginormous.  But we spent some time getting to know “Lightning” ahead of his session (and clarified that his name was no indication of his speed in the arena) before deciding to give it a go.

Early last fall, the therapist working with kiddo told us he had “graduated” from the services she could provide and suggested he move from hippotherapy to therapeutic riding.  He wanted to continue (and I was thrilled!), so on he went.

Since April of this year, kiddo has been working really hard to figure out how to control his body so he can give the horse direction and produce the results he wants.  He has an instructor in the arena with him, and a volunteer who leads the horse (additional safety measures are still needed) but, otherwise, he has his feet in the stirrups and the reins in his hands.

Lately, his instructor has been working with kiddo on his 2-point/forward seat.  (Google it if you want to know more about it; I don’t think I can describe it as well as a visual will.)  Having done this myself, I know what a thigh-buster it can be.  Trust me – there is no piece of gym equipment in the world that can replicate that exercise!  So the fact that he has been able to get into the correct position – just within the last week or so – is a big damn deal!

So when I saw the jumping finals were on, I thought it would be cool if he could get the visual of what he looks like when he’s working on 2-point.  (Just to clarify:  he is NOT jumping...yet.  I don’t even want to think about that option at this point, okay?)  It took him a few minutes to understand what I was talking about, but he eventually caught on.  And he was so excited!  “Hey – mom!  That’s what Miss Andi is having me work on, too!  I’m going to have to tell her about these ‘lympics when I go to my riding lesson tonight.”  Atta boy, kiddo!  You tell her!

I usually take kiddo to his lessons (and I get some quality equine therapy of my own) but had a prior commitment last night, so hubby took him solo.  When I got home, I heard kiddo tell all about the 2-point work he did, what he had to tell Miss Andi and then, much to my surprise, he said, “And I got to learn barrel racing, too!  Just like the cowboys, Mom!  You look and go around a barrel, and look and go around a barrel, and look and go around the last one, then come back to home.  It was cool!”

My heart was so full.  Not only did he do well with what he’s been working on, but he did something new and LIKED it!  That’s a big deal for this kiddo who so often shows anxiety around activities that make him uncomfortable.  Of course, it doesn’t hurt that he’s loving the horses, either.  :)

Later, I learned from hubby that Miss Andi would like kiddo to participate in an actual horse show they are putting together for the therapeutic riding kids.  Kiddo is over the moon about this opportunity.  Me, too.  Seeing him so excited, interested and confident is such a welcome change, and I will support him if this is something he wants to do.

 

As I finish writing tonight, I’m listening to the much-needed rain on the roof above me, laughing at the irony of my title above.  It’s such a real picture of how things are for us:  a ray of sunshine even in the darkest times is something we celebrate.  We’ve already weathered so many years of this storm, and have no idea how much longer it will last, nor if it will get better.  We pray and we hope for better days, but we don’t know when or how often we will get them.

So we’re going to keep celebrating these victories, no matter how small or insignificant they might seem to anyone else.  They're our rays of sunshine amidst much darkness, and they are what have helped us to survive.  I pray the forecast has many, many more in store for us.

Backseat Parrot

One of the blessings that comes with having a kiddo that is “wired” like ours is that he has an incredible memory.  It’s so good, it’s almost scary.

If you met him and you were wearing a pink jacket, and blue jeans, had your hair in a braid, he’ll remember…and tell us, two years later, that you were wearing a pink jacket and blue jeans, and had your hair in a braid the day he met you.  Since I can barely remember what I ate for breakfast most days, I don’t question his recall about things like that; I accept them as true.

Of course, kiddo lies to us from time to time too (what kid doesn’t?), but never about details like this.  (He has no idea yet that he has a “tell” when he’s lying and I’m not going to let him in on that secret anytime soon!)

I’ve joked that I need to teach him how to play cards and then take him with me to the nearby casino.  I figure we can win the money to fund the multiple therapies he needs that our insurance refuses to pay for.  (More on our ongoing insurance saga another time.)  Yeah – his memory about details that are important to him is that good.  And it scares the crap out of me most of the time.

The way we understand this trait is that it’s the flip side of his sensitivity to outside stimuli.  Lights that are too bright, noises that are too loud, smells that are very strong and places that are too crowded easily overwhelm him.  (Heck – they overwhelm me, and I’m considered “neuro-typical” when it comes to brain wiring.)  He remembers it all, and can tell you what he remembers with minute detail.

And there are times, like tonight, when his stream-of-consciousness descriptions and unexpected memory jogs have us in stitches.

We had the chance to get out as a family for the Alma College alumni picnic tonight (Go, Scots!), and were on the way home from the park in my mommy van.  I was driving, hubby was in the front passenger seat, and kiddo was in his seat in back.  I got to a light that had just turned green, and noticed the car in the lane to my left (previously stopped at the light) still wasn’t moving.  I did a quick double-take to make sure I hadn’t misread the light, and then commented aloud why the car beside me wasn’t moving.

From the backseat came a loud sigh and then, in the most exasperated voice, “Awwww, Lord.  Could you get moving, car?  You have a green light.  You need to get going.  Come on!  Jeez!”

I know we shouldn’t have laughed.  I know it’s encouraging him to do more of the same behavior.  I’ve read the books and taken the parenting-a-special-needs-child classes.  I know it.  But I couldn’t help myself.  It was funny!  Because it sounded just like something I would say.  Oh, wait – it WAS something I said at one point!

I looked at hubby and whispered, “I wonder where he got that idea?” and he couldn’t keep a straight face, whispering back, “Do you really have to ask?  Sounds just like you!”  Thanks, honey.  I appreciate your support.  And I take comfort in the fact kiddo is not repeating other words he’s most likely heard come out of my mouth when my child-is-nearby filter isn’t firmly in place.

Fortunately, kiddo’s commentary about the stopped car was over quickly and we moved on to other topics.  And when I got to the highway, kiddo decided to regale us with tales of the times he’s ridden in hubby’s car and they’ve gotten lost.

Bahahahaha!  I love that our little backseat parrot is an equal-opportunity observer.

Locking Horns with the Minotaur

Have I mentioned I’m a Taurus?  My birthday is May 1^st, so I’m solidly in the cusp of this Venus-ruled sign.  My birth process was induced since my mother’s doctor was going on vacation when I was due a little later in the month.  She had learned to hypnotize herself against pain to the sound of his voice, so she needed him there for my arrival.  Thus, I entered the world a little ahead of when I was expected.  Ironic, isn’t it?

While I don’t put all my stock in astrological musings, I do believe people born at certain times of the year tend to exhibit similar qualities as others born at the same time.  Many Taurean qualities apply to my constitution:  Earth mother, caretaker of others, self-reliant, lover of nature and animals, strong, prideful, appreciate of beauty in all forms, sensual and, of course, stubborn.  Yep…that's a fairly accurate description of my nature.  Those who don’t know me well (and see me in action when kiddo is having a melt-down, or observe my silence in the classroom when I’m giving a student space to process) think I’m an incredibly patient person.  HA!  If only they knew!  More on that later.

Kiddo’s “actual” birth date was September 9^th.  That puts his arrival under the sign of Virgo, the Virgin.  His “adjusted” birth date, however – the one we were planning on until everything went haywire – was December 10^th.  Had he arrived on that date, instead, he would have been born under the sign of Sagittarius, the Archer.

Given what I said above about the time of year when people are born, I can’t help but wonder…do preemies get the assignment of only the sign under which they were born?  What about the one under which they should have been born?  Better yet, do they get the benefit of both signs?  Or should they have a new sign created for them altogether?  Is kiddo a Virgo or a Sagittarius?  A Virgittarius, perhaps?  Or maybe a Sagittarigo?  Would that make his symbol the Virgin Archer?  Oy vey!

Based on how he acted today, I’m going with option three:  kiddo deserves a sign all of his own.  Given my stubborn, bullish nature – and considering the fact that he has half of my chromosomes in his little body – I’m thinking a sign with the Minotaur as the symbol would be most appropriate.  You know the Minotaur, right?  He (it?) was the creature from Greek mythology that had the head of a bull and the body of a man.  Yeah – it’s been that kind of day.  Pass the wine, please!

Any parent can tell you how tough it is to work with a child when s/he is being bullish.  The challenge we have is that kiddo’s nature is that way day after day after day, without end.  Due to his extremely early birth, he didn’t get the same time for development in utero as full-term children do, so his neurological function – “brain map” per se – looks quite different than yours or mine.  The best way I can explain how he operates is that he doesn’t have a “pause” button.  The phrase in our house is, “He went from zero to sixty like THAT (*finger snap*)!”  If you’ve ever seen him in action during a melt-down, you know exactly what I mean.  And for those of you who haven’t, I understand how puzzling this can be to hear.  Anyone who has seen the sweet little guy out at a concert, or being polite at church usually can’t imagine him in melt-down mode.

I think most people can tell when a neuro-typical child is headed for a melt-down.  (Yes, there are always some exceptions.)  For the most part, parents who are paying attention usually can catch when the little one is too tired, or too stimulated, or has had a rough day and intervene in time to help minimize the effects of said melt-down.  Oh, how I’d cherish that opportunity with kiddo.  Because of his “wiring” he can be completely fine one second, and screaming his head off the next…and, much of the time, we don’t know what set him off.

So our biggest strategy, based on hundreds of hours of therapies, and consultation with just about every specialist in the Grand Rapids area is…wait for it.  No, really – that’s the answer.  It’s waiting.  Waiting him out.  Waiting for him to stop screaming his lungs off.  Waiting for him to stop hitting the wall, or throwing pillows around his room (everything else had to be cleared out for his safety and ours), or yelling, or yelping, or squealing, or whatever behavior he has chosen in that moment while his brain is “offline.”

And, believe it or not, the waiting has absolutely nothing to do with patience.  Not a damn thing.  In actuality, it has everything to do with being more stubborn than he is.  There.  That’s my secret.  My Taurean nature at its best equals stubbornness that can outlast this little Minotaur.  There’s nothing wrong with a little healthy competition, right?  Have I told you what a fierce competitor I am?  (*insert evil laugh here*)

I’ve had several people pay me the compliment, “Oh, you must be such a patient person!” and they usually look at me like I’m an ingrate when I tell them, “No – I’m not patient at all.  As a matter of fact, I am one of the least patient people on the planet.”  I don’t like to wait in lines, I don’t like people who cut in front of me while driving and then slow down, I don’t like how long it is taking the scales to move down as I work to shed more pounds…the list goes on and on.  I like what I like, the way I like it, when I like it.  Period.

But most of the time, that’s not what I have in front of me.  So, I can either piss and moan about how unfair it all is (and I do allow myself a 15-minute pity party from time to time), or I can choose to do something that works to my advantage.  And since I have a child who can’t learn through punishment or rewards when he is in the midst of a crisis, my parenting style has to be different.  Because his behavior isn’t a parenting issue.  It’s a wiring issue in his brain.

It’s not about more consequences or fewer rewards, or consistency of punishment or anything else we’re doing.  (And please don’t suggest spanking – ugh!  Violent behavior toward a child exhibiting violent behavior is definitely not recommended.)  It’s about reminding myself that I’m more stubborn than he is, and then holding my own.

So, if you happen to see us in public sometime when he is having a meltdown and I am silently standing by him, waiting for him to pull himself together, please give us that space and let us work it out ourselves.  Don’t offer any “drive by” parenting “advice” or feel the need to comment at all.  Truly, silence is golden in a situation like that  Besides…do you really want to get in the middle of a battle between two sets of horns like ours?!

The Gift of Self Care

“…if you feel "burnout" setting in, if you feel demoralized and exhausted, it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective.” ~ Dalai Lama

Sorry to have missed you all yesterday, but I was having a great time engaging in the above concept.  (Didn’t want you to think I’d disappeared after just two blog entries, tempted though I might have been!)

The concept of self care is not new to me.  I grew up in a home where we grew some of our own food (as well as canned/froze/preserved it) and made much of the rest from scratch, drank plenty of water instead of sugary sodas, got a solid amount of sleep every night, prayed together and attended church regularly, took plenty of family vacations, and found interests that delighted us and kept us busy for hours.

I had a solid understanding and application of taking good care of myself for the most part, but somewhere along the way I started to let it slip away.  I started saying “yes” to too much and “no” to myself too often.  It wasn’t a huge shift; that would have been much easier to catch.  Rather, it was little by little, bit by bit, that I let myself lose sight of the importance of my own needs.  I had a rather exhausting mental hamster wheel of thoughts like, “I just don’t have enough time for me,” and “I have to do this, so I don’t have time for that,” and “Wow!  It must be nice to have time to do nothing,” and “If I don’t take care of it, nobody else is going to get it done” and more.  Over and over, I put my own needs behind that of everyone and everything else – and that was before I was even married or had a child!

Fast forward about 10 years to my return to school, this time at the Kalamazoo Center for the Healing Arts (now known as The Institute for Massage Education at KCHA) for massage therapy.  From the very first day of class, we talked about our self care as the most important tool in the profession of massage.  I remember my first Instructor (“L”) saying, “It’s important to take care of yourself so you can take care of others, if you choose.”

While the concept made sense, there was a part of me that had fed off my own martyrdom of being busy-busy-busy.  I’m soooo damn important because I have this to do, followed by that, followed by something else.  Right?  (I know some of you know what I’m talking about!)  I mean – I have things to get DONE!  What would I do with time just for me?  Time just to breathe?  I’d never stopped to find out before, but was willing to give it a shot.

I’m not sure I can express just how grateful I am that I was present at that time and place to hear those words, because the concept of giving myself that grace – that time and space to just be – has made a huge impact in my life, as well as that of my family.

Fast-forward to the present day...

As a parent of a special-needs child, the necessity of self care is even more important than I ever could have imagined.  Any parent can tell you how tiring it is to raise a child or children; any parent of a special-needs child can tell you how much more is involved.  (You’ll be hearing more about that in later posts, I’m almost certain.)

 When I’m exhausted (which is often), I’m less forgiving, more short-tempered and, generally, a lot less fun to be around.  When I’ve had some “me” time, I’m a much better everything:  wife, mother, sister, friend, writer, musician, teacher, cook.  Hell…I’m a much better ME!  And that spills over into everything I do because it’s the essence of who I am.

And I have some fantastic friends who make sure I get some regular self-care time, as well as an incredibly supportive husband who encourages me to take it.  Win-win-win!

In the case of yesterday, two of my dearest friends (“C” and “D”) and I got together to celebrate D’s birthday.  We do this for each other every year (going back 15+ years now, I think), as well as take one weekend in early November to hit Birch Run and Frankenmuth for our annual shopping trip.  I look forward to these gatherings and cherish the time we get to spend together.

When it’s our birthday gathering, we get to choose what we want to do.  So far, we’ve taken a couple of cooking classes, painted our own pottery, learned how to do glass fusing, shopped in multiple places (Holland, Saugatuck, and Shipshewana are some of our favorites) and made jewelry.  Yesterday, we added to the list by having a “Pinterest Party” for D.

Quick digression…

Do you know Pinterest?  If you do, then you’ll understand my excitement about the party. If you don’t, then you’d better get online and see what you’re missing.  In a nutshell, it’s an online bulleting board/community where you can see/share/store ideas for crafts, recipes, organization and more.  Some call it “online hoarding” but I think it’s great to keep ideas organized without wasting paper and time filing.  You can request an invite (just e-mail me; I’ll hook you up) and join the fun.  But be warned:  you’ll want to pack a lunch.  It’s that good!

Okay…back to the party…

D chose some food items and craft ideas, then C and I picked from those (and didn’t tell D; we wanted to have a little element of surprise), and I added a drink recipe that had gotten rave reviews to our menu.  Then we spent all day together, eating, drinking, doing crafts and enjoying each other’s company.  (This post is already long, so I can share recipes/links another time.)

Frankly, I don’t care what we do when we get together.  These two are such fantastic friends that we could spend the afternoon scooping horse poop at the farm where I ride and I’d be happy as a clam.  (Note to C and D:  I’m NOT suggesting we actually do that, okay?  Ha!)

As usual, our day flew by all too quickly and soon it was time to say goodbye.  Before we left, we made plans for our next gathering, to work on some Christmas crafts together.  And while I know that date is a few months away, I’m already looking forward to another fun-filled day of female fellowship.  I know, just like yesterday, I’ll come home fulfilled and that fullness in my heart will spill over into everything I do.  And that’s a fantastic gift to give to myself and my family.

Just like anything else I’d put in my day planner – dental check-up, massage, doctor’s appointment for kiddo, riding lessons, classroom time and more – I schedule that time for me.  For my self care.  On a regular basis.  Because if I don’t, it won’t happen.  Really.  If I don’t mark off that time for myself (or with friends or on the massage table or whatever), nobody else is going to do it for me.  Forget the old saying, “It’s better to give than to receive.”  Baloney!  Sometimes, it’s better to receive.