I just came across an article in a magazine about raising a disabled child. While I am thoroughly immersed in the special-needs world, I am drawn to articles in publications of a more typical nature.
Maybe I’m drawn because I am so aware of how the normal in this world often forgets about those deemed different.
The article caught my eye specifically as it highlighted a child with the same diagnosis as a close friend of mine’s son. While rarer than Down syndrome or autism, it often “looks “similar. And yet still different.
Like disability itself.
The scope of disability is broad. The word scope itself is contradictory to me, because it means “extent”, but my mind sees a telescope. Narrow, but enabling us to see an expansive view of things far away and out of our normal field of vision.
Disability is often like this. For those of us who live it daily, whether physical, intellectual or the many and varied combinations of both, our world can seem very small and closed as we operate with tunnel-vision.
My own experiences have often left me feeling alone and isolated.
Left wondering if anyone except me and those who live as I do really care about the seemingly small, yet realistically broad population affected by disability.
Social activities, clubs, groups and even churches are geared to the typically-developed. While many strides have been made to accommodate the disabled, there remains the unspoken sense that things just don’t apply my special-needs child.
I parent him differently. Time and again I have heard to treat him like my others and have the same expectations, but the reality is – well, unrealistic.
How can I explain right and wrong to a child who often does not understand a word I say?
And if he does, how do I know he does? He can’t tell me. I can only assume and hope.
I never really know how much he knows. Only by extreme repetition and extensive practice is a task accomplished, but I really never know if he gets it, or if it is just rote habit.
The physical, mental and emotional exhaustion can be overwhelming. For me, it’s the constant and active stage of pre-talking toddlerhood, encased in an 80-pound 12-year old. There is no indication or prediction of when or even if the next stage will come.
Throw in puberty changes and up goes the ante.
And that’s just the now. The stress of planning for the future overwhelms me and while I lay it before the Lord, I feel irresponsible if I simply don’t worry.
Recently, my son accidentally got locked in our van. Fortunately, it was running with the AC on. But as I motioned repeatedly for him to unlock the door: “Come on, right here,” as I banged on the place the lock would so simply slide, he just looked at me and smiled.
I ordered a tag for his shoe with a safety alert blaring “I have autism and am non-verbal. “ Because running or bolting is a concern.
My typically-developed toddler once ran from me in a parking lot and after discipline never did again.
But again-it’s different.
I long to hear: “I love you Mommy”. And add cute sayings for my list. My other children have many.
But one has only a name.
I know that words are not always necessary.
But the want in me aches to hear a spoken phrase.
And my self-centeredness makes me ashamed.
I read a comment recently from a mother who lost her baby who would have been severely disabled if he had lived. She said people told her it was for the best.
And she said she would see parents of disabled children and think how lucky they are.
I am blessed beyond measure to be his mother. I am privileged and unworthy.
My reality is the constant check of wanting more for my son and feeling guilty for doing so.
The constant element that permeates my life is only occasionally smattered in a magazine that talks of usual life. My constant different mixed with my everyday normal calling of wife and mother.
It’s where my callings meet – of those I chose and those He chose.
A ministry given by the same grace by which He sustains me in my weakness.
He carries me through what He’s called me to do.
“He who calls you is faithful, who also will do it.”
I often hear, “I don’t know how you do it.” I do not think any of us really know how we do it, except that we just do because we have to. And I don’t know how those fighting harder battles do it.
But we do because we are called. Chosen.
Each of us is chosen, by Him, for Him, to do His work and share His heart.
And whether the world ever fully accepts or includes or even mentions those He has chosen me to speak for, I will not stop.
Because He has called me.
Because He is faithful.
Because He will do it.
What is your calling?