Tag Archives: special needs

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.

Next!

Well, we’re just about three months into the school year and munchkin was transferred to a new class this week–a move his ESE team and I decided upon last week. For a rigid child who doesn’t handle change well, it’s been a tough week.  I can’t tell you how many times he’s asked me, “When do I get to go back to Miss A’s class?”  I think I’ve had almost as tough a time with this as Jackson has.  There’s comfort in the known for all of us.

Jackson’s new class is vastly different than his previous class.  Miss A’s class had grown to a mix of twenty-plus girls and boys, typical children and children with mild developmental delays.  His new class has eight children, all boys, all of whom are on the autism spectrum with developmental delays of varying degrees.  It’s a lot to get used to for me as a parent, so I’m certain it’s a lot for Jackson to get used to as well.

True to form, I can’t pull any information out of Jackson with respect to what they’re working on or what they’ve been doing in class.  I do believe the emphasis has been taken off academics and now focuses on the social skills required to interact in a classroom setting.  While this social component is much needed and certainly something Jackson obviously lacks, it enforces the reality that munchkin is non-typical—something I’m occasionally still coming to terms with two years post diagnosis.  I’d be lying if I said I wasn’t sad that Jackson isn’t with the children he’s become accustomed to over the past three months.  I’m sad that he misses the class gerbils, Peach and Penelope.  I’m sad that his former classmates are busy making paper turkeys and various Thanksgiving-related crafts and eagerly planning a Thanksgiving feast, while Jackson doesn’t even know a major holiday is around the corner.  I miss the loving and compassionate Miss A whom I’ve grown to trust and have enormous admiration for.  And most of all I miss those adorably catchy songs he came home singing for hours on end.  Oh well, onward and upward, right?

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change. ~ Charles Darwin

Shine Your Light

I have a confession to make.  I’m insecure.  I have been my entire life. To compensate for my lack of self-confidence I’ve historically been a rather gregarious gal.  Hiding behind this public persona, however, is a person deathly afraid of rejection.  I talk a good game, but truth be told I hide my life and my “light” from the world.

In previous posts, I’ve shared links to both a recent local television news segment [http://bit.ly/15QPPR2] and half hour news show [http://bit.ly/153Jhiu] I participated in, both of which speak on the subject of autism (early diagnosis and education, respectively).  Terrified of public speaking, I told myself that it would be completely worth it if our family’s story helped one person.  Let me tell you—I was elated to receive an e-mail from a woman who saw the news show on autism and education and was looking for information.  The discomfort I experienced by appearing on that show was well worth it based on this single e-mail from the grandmother of a young boy with autism.  She was seeking information on schools, programs and medical providers.  I was beyond thrilled to share information I’ve gleaned and compiled over the past two years.  Additionally, another woman contacted me via a mutual friend of ours.  She has a daughter with autism and is relocating to Palm Beach County.  She too was seeking information on education and healthcare/therapy providers.

Had I not stepped out of my comfort zone I wouldn’t have been able to help these women. The bottom line is this:  Folks took notice.  Awareness was raised.  People—just like me—are looking for help and searching for answers. Don’t isolate yourself.  People aren’t out to judge you. (Well, at least not the majority of them.)  Parents are simply looking for help.  They’re looking for a connection.  They’re looking for acceptance.  Their eyes are upon you and me. Illuminate your journey and you’ll light their path.  That’s part and parcel of our experience.

 “You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.” ~Matthew 5:14-16

“Raw”

Munchkin had a seldom-seen stillness about him this morning that was especially apparent on the drive to school.  This stillness allowed for a palpable openness about him–something that I rarely get to see.  Typically, Jackson’s personalty is such that he must be in control at all times.  He is completely and unequivocally in command of his surroundings and the things he allows himself to be exposed to.  He’s a child on high alert.  Some folks tell me this is a good thing, but for me it can be disheartening to constantly be shut down at every turn. There are so many things I would love to do or experience with Jackson that he simply will not have any part of.  And while that’s completely okay, it doesn’t lessen the isolation I sometimes feel, stemming from living in a very thwarted and limited world.  But this morning was different.  Jackson talked.  I listened.  I talked.  He listened.  Did you get that?  WE talked!

This openness allowed a rawness to surface inside me that shattered my soul–a rawness that is oftentimes stifled by the day-to-day tasks and responsibilities of parenting.  The utter rawness I felt while driving to school left me broken and humbled beyond description.  I get to be this child’s mom.  Me!  What an absolute privilege!  I am so underserving of this magnificent gift.  How easy it is in parenting a child with developmental challenges and special needs to mistake parenting solely as a serious responsibility (NOT burden, mind you), as opposed to the blessing it truly is.  

My prayer:  Thank you, God, for entrusting us with this precious child of yours. Guide our every breath word, action and reaction, O Lord, as we steward him through his life on earth. Give us your wisdom and knowledge as we raise this child up.  Let you Spirit direct our steps as we teach this precious little one to love you, to love Jesus, and to love all people.  Let us love him with the same love, grace, mercy and peace with which You love us.  Be glorified in all we do, Lord–especially as parents. In the name of your precious Son, Jesus. Amen.

Don’t miss this, folks.  We are blessed!  You and I are so very blessed.  

Behold, children are a heritage from the LORD, the fruit of the womb a reward… ~Psalms 127:3