Month: November 2015

From a Special Needs Sibling

IMG_1051

Warning: I’m bringing you guys some real talk here.

Christian has mostly nonverbal, moderately severe autism. He needs constant supervision. Despite my sister Leslie and me being the same age as him (age 20), we appear to be the older siblings. Adam (age 25), Leslie, and I are the “normal” ones.

I’ve felt guilty that I can do things that Christian can’t—be educated in a typical classroom, hang out with friends, eat out in restaurants (severe food sensitivities and GI issues also factor in), go to the movies, perform in choir and theatre, drive a car, go to college, etcetera.

Honestly though, I’ve also pitied myself for all the things my family and I can’t do because of his limitations, including those that many people wouldn’t even think about.

I’ve been irritated when he hyperactively runs throughout the house, and I’ve been embarrassed when he flaps his hands and rocks his body back and forth while we’re in public. And I’m still guilty of this sometimes.

I grew up with the heavy weight of responsibility not only to make up for Christian’s limitations, but to appear completely needless and self-sufficient. I had to have it all together and try to help care for my whole family.

We’ve had to learn how to best handle the meltdowns and the sensory overload. I’ve had to accept the fact that having both of my parents at important events is almost always impossible. I’ve also fought overwhelming feelings of both pride and helplessness, and I’m still fighting.

Seeing strangers, acquaintances, and even my own friends give Christian a “look” when they first see his behavior (and his protective helmet) frustrates me. Hearing people make ignorant jokes about people with special needs, or even just seeing them be passive when someone needs help, pains me. Witnessing Christian experience sadness, frustration, hurt, or grief without the ability to verbalize them burdens me. Seeing him have grand-mal seizures one after another (as of this morning, 160 in three years) grieves me. Experiencing the consequences of our dad moving out last November and witnessing my family, especially Christian, process it all has completely rocked my world.

Our family receiving compassion and patience from people, especially those who have never had close contact with people with special needs, encourages me. Seeing people’s desire to become more aware of special needs and help the people who experience them inspires me. Taking in Christian’s smiles, laughter, and uncontested joy brings me joy of my own. The Lord constantly reminding me of His strength being made perfect in my weakness empowers me. The Lord showing me how desperately I need Him and drawing me nearer to Him in these trials has brought me deeper than I ever thought possible in my mere twenty years.

I’m eager for others to know that this joyful, compassionate, brilliant human named Christian is, in fact, a person—made in the image of God. Life is hard, and life in a special needs family is even harder, with wider curves and more frequent bumps in the road. The Lord is using my experiences as Christian’s sister to teach me about Himself, more specifically about sympathy, compassion, patience, vulnerability, joy, gratitude (especially in the small things), and utter (key word) dependence on God.

“The pain will not define us; joy will reignite us. You’re the song, You’re the song of our hearts. The dark is just a canvas for Your grace and brightness. You’re the song, You’re the song of our hearts.” – Rend Collective, ‘Joy’