Tag Archives: family

It’s a good thing I don’t write to earn my keep.  If that were the case I’d be starving based on my last blog post.  Writing is indeed an outlet for me, but it is also a privilege—one I’m not often afforded.  The tradeoff is rich, however.  Our little tribe has lived a rather full life over the past few months.  Not full by the world’s standards, but full in the meaning of life.  We’ve shared a lot of quality family time, and Jackson and I have had a lot of special mama-son adventures too.  Throw in work and household responsibilities and well, you know what I mean.  Time escapes me.

Summer is fast approaching.  I recently finalized our summer schedule.  This is something new for me.  A summer “schedule” isn’t something I’ve had the luxury of planning in the past. However, Jackson has reached some major developmental milestones in the past year, so blessedly some opportunities have opened up to him.

One such opportunity is a weeklong day camp someone has very unexpectedly and graciously presently to Jackson.  The offer was completely unsolicited and I cannot express in words how very grateful I am at the prospect of this camp.

Over the years I have received countless empty promises of assistance and help from friends and acquaintances.  These empty promises, combined with the general disappearance and/or absence of folks I once counted as friends, have left me jaded to say the least.  I’m no longer bitter about it (admittedly I once was), it’s just a fact of life I imagine most parents of children with varying challenges face to one degree or another.  Once I accepted the exodus of these folks from our lives it freed me to be self-sustaining.  All this to say, opportunities such as this camp haven’t been extended to us in the past.  Every activity Jackson participates in has been a hard fought victory for which I’ve groveled and even shed a few tears.  Victories I do not take for granted for nary a second.  I was and still am blown away by this mere acquaintance’s gracious invitation.

I profoundly expressed my gratitude while speaking with her to complete the initial paperwork.  She downplayed the situation, stating she believes the world needs a stronger sense of community—something I wholeheartedly believe and try to live out daily.  The world would be a much better place if we all stepped out and stepped up to help those around us.  This may be something as simple as surprising your coworker or employee with a coffee or asking your neighbor if they need something at the grocery story.  Kindness and generosity don’t have to break the bank, and are oftentimes something as simple as holding the door for someone or saying, “Thank you,” to someone who opens a door for you.

So I emphatically say, “Thank you, kind woman,” for taking a chance on our son. It’s going to be a great summer.  My heart tells me so.

Play

“Play is often talked about as if it were a relief from serious learning. But for children, play is serious learning. Play is really the work of childhood.” ~Fred Rogers

Why, as a society, have we deviated so far from this mindset?  We push our kids into a tiny, constrained box, and expect them to behave accordingly.  (And that box continually gets smaller and smaller.)  Subsequently, when our children don’t conform to society’s perception of a “good” child, we slap labels on them.  And why?  Is it because we’d rather parent and educate automatons as opposed to vibrant, precocious, inquisitive and curious little beings that take energy, time and effort?  That’s a rhetorical question, folks, but one we seriously need to consider.  As the parent of both a 32 year old and five year old, I say this with authority and from a VERY unique perspective.

Bear in mind, I say this as the parent of a child who definitely has all the classic characteristics associated with high-functioning Aspergers.  BUT, I’ve encountered more than a few medical professionals who recklessly want to add additional letters to his diagnosis.  I also see so many other kids who are simply playful, curious, active, etc., who clearly don’t deserve to be alphabet soup children.  I want to shout, “THEY’RE JUST KIDS, for Pete’s sake! LET THEM BE KIDS!”  We need to take charge and advocate for them.  We really do.  We are THE VOICE for our littles.  Certainly not the schools.  Not the doctors.  Not the busy bodies in the grocery store.  We, the parents, are their voice.

Perseverated is not a bad word

per·sev·er·ate – To repeat a word, gesture, or act insistently or redundantly.

Recently, my husband and I made plans for a “date night” with our son.  Weather permitting (which it didn’t), we planned to go on a picnic dinner the following evening.  Our date was to include the three of us and our dogs at a local dog park.  My husband voiced the idea to our son prior to his bedtime one night this week.  The impending evening’s date was the first thing Jackson mentioned upon waking the following morning.  And according to Jackson’s teacher (the same day), he apparently “Perseverated on needing day to end so he could get to ‘date’ with mom and dad at dog park.”

I’m just spit balling here, but I don’t think the teacher’s note was written in a favorable tone.  And please understand, I don’t think Jackson’s teacher is being overtly critical or mean spirited when she pens notes such as this.  (This wasn’t the first time.)  But I’ve got to tell you, I also do not instinctively see a negative when I see a note such as this—probably to his teacher’s disappointment.  My mind (blessedly) isn’t wired for that.

As challenging as Jackson can be at times, I’m grateful I can see his light shining through.  Additionally, I’m able to remind myself of his difficult origins.  If it sounds as if I’m trivializing matters, please know I’m not.  And I’m also not saying I don’t sometimes lose my cool.  I do.  (See previous post from 1/23/2014 titled “Fail.”)  But I also know I drive myself most crazy when I let people of “authority” into my head.  That’s when I start to panic over Jackson’s “differences” and challenges.  It’s when we receive back-to-back reports of “defiance” and meltdowns that I literally go into overdrive researching autism spectrum disorder (“ASD”), Asperger’s Syndrome and sensory processing disorder (“SPD”).

With a clear head, at least for this moment, let me tell you what I really see when I read a notation such as the one mentioned above.  When I read the word “perseverate,” I see perseverance—a noun meaning steadfastness in doing something despite difficulty or delay in achieving success.

When I see the word “date,” I think of doing an activity with someone you might have a relationship with.

And as for the words “mom and dad,” well those are a given.  And they’re really special, considering Jackson’s origins as an orphan who spent his first five months of life in an orphanage in Ethiopia.  Truly.  Special.  I’m beyond humbled with gratitude over the titles “mom” and “dad.”  It’s one I sport proudly and don’t take lightly.

Sometimes it’s all about perspective.  The definition of which is:  The capacity to view things in their true relations or relative importance.  Thinking back to that same day, and the expectancy of a date night with Greg, Jackson and our dogs and some Chick-fil-A at the dog park?  I confess.  I perseverated too.  That’s the truth.  It’s the absolute truth.

The Family that Skates & Scoots Together…

Jackson and mom--skating and scootingFor the past few weeks, I’ve been mulling over a post about our family’s newest hobby.  At the tender young ages of 45 and 49 respectively, my husband and I have taken up skateboarding.  I don’t mean tooling around, meandering the neighborhood, while taking in the sights.  We’re hanging with the big dogs at our local skate parks.  No.  We’re not crazy.  This came about because of the importance we place on family time.  Jackson loves to ride his scooter, and he’s very good at it.  He’s agile.  He’s graceful. And he’s FAST.  When Jackson scoots around the neighborhood, safety dictates that I run in tandem with him so I can monitor driveway traffic.  This means I’m sprinting for one to three miles at a given time.    One recent Sunday afternoon, we took Jackson to the skate park simply as an outlet for him.   My husband and I decided to give it a try too, so we could make the outings truly about family.  We’ve been hooked ever since.

 

Jackson and dad, learning the ropes.

Jackson and dad, learning the ropes.

I had so many amusing things to say in my originally intended post.  I was going to speak about the fact that I skate with orthotics in my Vans and use an SPF of 50 religiously.  I was going to talk about the fact that it takes a good 15 minutes to get the joints, tendons and bones adequately lubed in my feet and ankles.  And I was also going to mention how tolerant and even accepting most of the young whippersnappers are.  Aside from a few occasionally potty-mouthed teens (which are dutifully kept in check by fearless skate park manager Michelle), we’ve not had a bad experience.  Until today, that is.

Going down (and stimming all the way).

Going down (and stimming all the way).

As is with most Sunday afternoons as of late, we went to our local skate park following church.  Our friend, Paul, joined us.   The four of us were having a great time.  We skated and scooted hard, working up a sweat.  We were all attempting new things and chatting up the really young kids who are beyond encouraging.  Jackson was doing his thing, going up and down hills and riding his scooter around the park.  I was standing on top of a hill with my new “friend,” Sam, when a young boy ascended the ramp and stopped in front me.  The boy was around eight or so.  He mumbled something to me but I didn’t understand what he said.  I asked him to repeat himself, which he did.  He said, “Make him stop.”  I asked, “Make him stop what?”  He said, “Skating.  He’s creeping me out.”  I was utterly taken aback, but replied, “No.  He’s just scooting.”  He said, “No.  He’s not,” and skated away.  I knew exactly what he was referring to.

Sam, also around 8, overheard the conversation and asked me what the boy was talking about.  I simply explained that Jackson sometimes makes noises.  I loved Sam’s muttered reply to the already-gone boy, “Get over it.”  I wasn’t completely surprised this happened.  I expected it.  Someday.  Nonetheless, I wasn’t prepared for it.

You see, Jackson verbally self stimulates.  [http://www.autism.com/index.php/symptoms_self-stim]  He makes sounds.  All.  Day.  Long.  Seriously.  He’s done it for years and rarely stops, if ever.  I took Jackson to the skate park on a school holiday this past week.  I chose not to skate with him, as we were running some errands afterward.  As I watched Jackson from the observation deck, I heard him clearly.  He was uttering endless variations of completely nonsensical words and sounds.  I could see some of the older children looking at him with curiosity.  It was in watching the kids’ reactions that I knew someone someday would say something.  I just didn’t think it would happen so soon.  He’s only five.  Five!  For Pete’s sake, Jackson’s only five.

My initial gut reaction (which I DID NOT act upon) was to say, YOU creep ME out, you little brat.”  THANK YOU, LORD, for reigning in my tongue.   You can come at me all day long; just don’t you dare come at those I love.  I will defend my brood to the end.  I promise you that.

I’m profoundly sad about today’s event.  I get a lump in my throat every time I call it to memory.  I’m not sad for myself, mind you.  I’m sad for Jackson and the unkind people he will encounter throughout his life.  He has such tenderness about him.  Heck.  This is the boy that asks every single person who falls at the skate park (and there are many), “Are you okay?”  He’s kind.  He’s considerate.  He’s loving.  He’s trusting.  And people are going to break his heart and crush his spirit.  That’s the nature of us human beings.  As a whole, we don’t tolerate different no matter the age.  The mere thought of this shatters my heart.

Happy Birthday

Britt

Today, we celebrate the birth of an utterly amazing woman who took the world by storm 32 years ago this very day.  Happy birthday to our beautiful daughter, Brittany.

Britt, seeing the person you’ve evolved into over the past three decades is what allows me to parent your very precocious brother today.  Through you, I am blessed to see the beauty that lies on the other side of the parenting mountain.

You are fierce!  You are strong!  You are brilliant!  You are light!  You are laughter!  You are love!  And you are loved.

Today, we celebrate you, my beautiful daughter.  The world is a much better place because of you.

The relationship between parents and children, but especially between mothers and daughters, is tremendously powerful, scarcely to be comprehended in any rational way.         ~ Joyce Carol Oates

Sacrifice

This post isn’t about me, per se.  It’s a message for someone.  I don’t know who the person is (or people are), but I believe God has pressed it upon my heart to put the following encouragement out there, not necessarily as someone who has been-there-done-that, but as someone who daily IS there DOING it.  I’m talking about parenting a child with special needs—great or small, whatever those needs may be.  Whoever you are, God wants you to know you are not alone.  Not only am I in the trenches with you, but there are countless others out there who get it—and get you.  Of course everyone’s situation is unique, however, those of us battling it out in the parenting trenches know your internal, physical and spiritual struggles.

If my admittedly failing memory serves me correct, parenting a child with special needs is not something I neither signed up nor signed on for when I inked my parenting contract with God.  But then again, few people do.  (There is a very special place in heaven for those whose hearts God has set to seek out and parent children who have special needs.  Bless you.)  As the parent of a child with developmental challenges, pipedreams are no longer in my wheelhouse.  That’s not conjecture; it’s fact.  I’m not seeking sympathy, I’m simply telling you my reality.   I can’t see past today.  My son consumes me from the moment his eyes flutter open at the crack of dawn until he finally drifts off to sleep at night.  His days are fueled by a great deal of anxiety and nearly every second of my day is spent caring for or interacting with him in one way or another.  And the few hours I’m afforded during the school day are spent at my office doing full-time work on a very part-time schedule.

One of the many things I’ve learned firsthand over the years is this:  you cannot effectively parent a child without sacrificing yourself.  Every family’s situation is unique, however, parenting a child with developmental and/or physical challenges greatly magnifies the sacrifice required of parents and caregivers.

I’m less than happy and more than a little embarrassed to admit that oftentimes I look at friends and acquaintances (and even my husband/business partner) through green eyes of envy.  I had—and continue to have—so many dreams and aspirations I fear will never come to fruition.  But I’m learning to have peace with this possibility.  At times it’s been a tough pill to swallow, but our mighty Comforter is balm to my wounded ego.  When I get a case of the feel sorries, He reminds of this:  Jesus’ birth, life and death were foretold; His sole purpose was to be mankind’s Savior—our Redeemer.  He came to earth to be The Sacrificial Lamb.  Period. He didn’t juggle many roles in His short time on this earth.  Nor did he try to find a way to mitigate His purpose.  He had a singular objective.   Jesus never questioned that.  Never.  Ever.

Now, I am absolutely, positively NOT comparing my sacrifice or anyone else’s for that matter, to the ultimate price Jesus paid for you and me.  However, I firmly believe as mothers in general our lives must, to some degree or another, be a living sacrifice for our child(ren).  My experience tells me this is especially true for adoptive parents and parents of children with special needs.   Both bring so much to the parenting table.  We simply cannot have it all.   There are many folks who believe differently.  There’s a host of people out there who either try to convince us we can have/do it all or guilt us into believing we fall short if we don’t aspire to be supermom.  But as the mother of both a soon-to-be 32 year old and a five year old on the autism spectrum, I can tell you it’s an unreasonable goal and trying to do so can be a real spirit breaker.  In this instance I have most definitely been-there-done-that.

So, my dear friend—whoever you are, the only counsel I can offer is take it easy on yourself.  Please, please, please give yourself a break, and while you’re at it, a pat on the back.  You deserve it.  I guarantee it.

Overwhelming Grace

For the first time in weeks I took (as in forcefully snatched it out of the day) the time this morning to go for a run.  I took our two energetic pointers with me.   Since it’s been awhile since our last run, It took a bit for us to get into synch.  As we were plodding along (read: sucking wind) early in the run, i was struck with the following thought.

Through the precious blood of Jesus, my husband and I are God’s adopted children.  In turn, God birthed the desire to adopt a child and facilitated Jackson’s adoption.  Then the three of us adopted these two knuckleheads (thought with all the love in my heart) running along with me. Truth be told, all five of us are as broken as the day is long.  Seriously.  Our family is a whole bucket full of whacky dysfunction, but God’s amazing grace covers each and every one of us.  And that makes it not only okay, but it makes life doable.  Even on the worst days when I want nothing more than to pull the covers up over my head and pretend I have nowhere to be, HE has got this. HE carries me.  Everything is gonna be alright.  And for that I’ll praise Him and worship Him all the days he grants me on this earth.  Thank you, LORD! Thank you.