Thursday, June 5, 2014

"Mom, I Wish My Disabilities Weren't Invisible."

"... God does not view things the way men do. People look on the outward appearance, but the Lord looks at the heart."  ~ 1 Samuel 16;7, NET ~

From the time she could toddle, something was different. 

"You're just overly sensitive because of the ministry you run," people told me.

They were wrong.

Multiple, life-threatening allergic reactions and strings of strange behaviors later, a grade school teacher finally asked for the first assessment of our daughter.  Two teachers later, with increasing sensory issues and behavioral issues in class, she received a full cadre of testing, both in school and with private practitioners.  Her irritated teacher hissed through gritting teeth and thrust jaw as we tried to assemble her first IEP in 3rd grade.  The unflappable character and tender demeanor of her 4th grade teacher gave us hope.  Our girl made great strides that year.

Unfortunately, transition to middle school and a drop in supports that we had agreed to, only served to prove that our girl was not at a place where she was gaining as much independence as we had thought.  It took three-quarters of the 5th grade school year to get to a place where things were even beginning to become manageable for her.  This year in 6th grade, things have only gone from bad to worse.  It has felt much like spinning in circles then walking on gelatin.  Instability at every turn has seemed to be the hallmark of this school year.

I would have no qualms homeschooling her.  I have done so with my other kids in the past.  Yet, with the social issues that Asperger's brings, we have chosen to honor her wish for the time being, allowing her the closeness of the few friends she has managed to successfully develop by staying at the school.

Even so, my heart smashes in a thousand pieces as I struggle through hearing her report how she is continually treated as the "bad" child within the school setting.

One day she cried to me after school, "Mom, I wish my disabilities weren't invisible.  The kids with Down Syndrome do naughty things, but they never get in trouble because people know they have a disability and feel sorry for them.  I don't look different, so I always get yelled at."

Now, let me clarify that "yelling" to our girl is any stern correction, gruff voice, physical expression of disappointment or heavy sighs of disgust.  In her world, she gets "yelled" at quite a bit.  That leaves her feeling inadequate and worrying if she has any credibility with even one of her teachers.  It's heartbreaking.

Yet, what she is experiencing is every bit "normal" in the wider scope of humanity.

If we go back to the dawn of history, God created humans to function in a certain way.  Our powers of observation are a critical part of our discernment.  We would be fools not to use the information we are taking in to formulate judgments or decisions about situations and people.  It is the "outward appearance" that can warn us that there is danger, tell us if someone might be friendly, or advise us that something is just not worth our time.

However, God points out that He does not see things from the same vantage point.  I am SO grateful He doesn't!  He sees the wounded heart of my girl.  He sees a super smart, funny, clever person who has many challenges to social connection in this world.  He sees a beauty who is perpetual motion and highly impulsive, but who is firmly anchored to Him in love.

Because people cannot overtly see her disabilities, they often fail to extend her the grace or mercy that they might be inclined to extend to others with more visible challenges.  I cannot fix the fact that people perceive her in negative ways because they see odd behavior from a child who might otherwise look so "normal".  I cannot change the attitudes of others who may view me as a "bad parent" because she dresses in boy clothing, wears her hair short or fights back when others have wronged her.  We press on doing the best we can with what we have been given in this oh-so-broken world.  I continue to work on that to which God has called me -- shaping her character to reach the potential of all that He has created her to be.

My job as her mother is not only to nurture her with my love, but also to be a coach and living reminder of how her Maker views her.  She has infinite worth and value.  She is boundlessly loved.  He sees the truth even when no one else believes her.  He cherishes her no matter what her latest haircut or quirky clothing trend or weird hobby.  She bears His fingerprints, even if no one else can see it.

Even when she has sucked every last drop of energy out of me as a mother, she still brings a smile to the face of God.  I am SO thankful that He loves her more and better than any human ever could!

PRAY:  Oh, LORD, thank You for seeing beyond our brokenness into the truth of our wounded hearts.  Remind us to take courage that even when the world doesn't understand, you are still El Roi, the God who sees us.

3 comments:

  1. My daughter just got diagnosed with Non Verbal Learning Disorder. We've been dealing with social issues and quirky behavior for awhile. I get it about the invisible disabilities being just as hard as, or even harder than visible disabilities. I also have a son with Down Syndrome. Thank you for a helpful post that reminds me to keep loving, nurturing and teaching her that she is beloved in the site of her Maker and her family.

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  2. Excellent...posting over at the Key Ministry page!

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