Rolling Without Limits

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I’ll Take Care of You: Raising a Child with a Disability
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I’ll Take Care of You: Raising a Child with a Disability

Mothers love their children, and fathers want to protect them from anything that might  harm them. It’s often tricky raising a child a disability, and it makes you wonder how long and to what degree do you help them? When do you start moving them toward the big bad world?

As a kid, I had been somewhat over protected but that’s because I’m a girl not because I had a disability. Although, I know my parents had their fears, but they seldom shared that with me.

Instead, they encouraged anything I wanted to try. Telling me along the way if I wanted it bad enough that I can make it happen, and I took that with me into adulthood and I learned to deal with just about every situation.

It wasn’t easy and was very scary, and there were setbacks, and also awesome things happened that I didn’t expect. I took on being the caregiver as my father’s illness ravaged his mind along with my mom & brother. My brother and I took care of my mother after my dad’s passing, and again, I became a caregiver. I had been prepared to be helpful and not dependent. They prepared me to live my own life, whatever that may be.  

After my parents past my older brother thought it was his duty to “take care of me” and he wanted to which is a wonderful gift to have a sibling who loves you that much. I however, fell in love and moved away much to my brother’s dismay.

Because I hadn’t been treated differently, I grew up strong with self-esteem and the courage to follow my dreams. My parents instilled that in me even though they were concerned with my chronic pain/worsening disability as they were getting older.

I grew up with a girl whose parents are so protective that even now at the age of 44, she has low self-esteem, still living at home, only allowed to see her boyfriend once a month & isn’t allowed to marry him if she chooses not to mention she isn’t allowed to be alone with him ever. No, she’s not mentally challenged, but she’s legally blind & physically challenged. She can’t drive and is pretty much at her mom’s mercy since her dad passed.

She is still treated as a child and when I think about her. I wonder what her future holds when her mom passes. She has no life skills, they weren’t taught to her. Her parents were highly educated people, her dad, a principal and her mom a nurse but their fears for her well being have effectively taken away life choices for my friend, making her feel depressed, lonely & with no self-esteem plus suicidal. Especially watching her younger sister date, get married & have kids, everything she ever wanted.

When she talked about getting married to her HS sweetheart, they reunited 20-plus years later at work her mother said she had to wait until she was dead.  How unfortunate she isn’t given the same consideration as her younger sister, having your mother be by your side on your wedding day.

Her mother is a good woman, and her dad was pretty great too but from my perspective, they have missed the mark this time.

 Did your parents instill confidence or did they over protect?  Who wants to share their experiences?

 

Photo by Children's Bureau Centennial

 

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  1. beckthewreck
    I caught polio on my first birthday. I spent time totally paralyzed in an iron lung. My mother broke the hospital rules of the 1950's which decreed visitors could come only on Sunday between 2:00 until 4:00 p.m. every Sunday. She was there three times a day. She came in just before the food trays were delivered to the room. I always knew when she was coming because of the racause in the hall of staff trying to get her to stop. She was deaf, statuesque, and determined. A formidable force. The nurses came to really like her after a few months. She would come right over to me, where the staff would fall away as if shaken off, and kiss my face. Then she would sign,"Hi, sweetie, I'm here. Food will be here soon. I think it will be good today." Then she would place the rolling bed table near my head. Then she would go around the room greeting each child, in her gravel-Gerty voice (family name for that voice) pulling a bed table to the head of each iron lung, or bed. Then she would come back to me and brush my hair or sit a talk with me. When the nurses began delivering the meal trays they would run in and slap a tray on each table. They would be moving fast. My Mom would follow right behind them removing the covers from each plate and opening the milk boxes. As Mom moved she would tell us what was on the plate for the meal and end at the final table reminding us that if we wanted the dessert we had to eat every bite of all the other food first. The rule was, everyone got a bite of food, then everyone got a sip on the straw, then bite of food,then a sip on the straw. My Mom moved from person to person talking and feeding. She praised everyone and encouraged everyone. In my room, not one kid starved to death. Although the institutional syndrome was not absent, few kids died in my room because of my mother. After lunch, Mom would turn off the iron lung and pull me out to hold me. She discovered that holding me at a particular angle, in a simi-sitting position, I could breathe for a short time. However, the doctors believed we should be kept flat and moved as little as possible. Needless to say, doctor after doctor took themselves off my case because of my impossible mother. Garrett, the head of orthopaedics surgery cut a deal with my Mom. The deal was, "my mom would play mom, and he would play doctor." It worked. After four months I was breathing on my own so Garrett released me to go home. My Mom did Sister Kenny Therapy on me, and moved my limbs and body three times each day. I wanted to walk, she would hold me by my armpits and shuffle me across the floor like a limp doll. Garrett realized she was hurting her back, so decided to put me in braces at 18 months of age. Needless to say, I was not a happy camper. My Mom kept me In the braces until I quit crying and was trying to roll myself over with them on, she removed them only for baths. I had to sleep in them. Tough love. When I learned to get my braces crossed one over the other and roll, Garrett decided to stand me up on crutches. I can't say I walked. I kind of dragged myself forward using my shoulders, but I moved. When I was strong enough to pull myself down the street, or where ever, my Dad would purposefully kick my crutches out from under me. I fell, often hard falls. People on the street would attack him for this seeming cruelty. He would let the attack continue until I had managed to pull myself up off the ground and get my crutches under me. Then he'd grab the person, point at me and say, "Look! Look what she has done! She got herself up! That is amazing and necessary! She also has to learn how not to be knocked down!" Tough love. I remember the last time he kicked my crutch. I held myself on the other arm, and whacked him really hard in the shin.. After he quit hopping around, he laughed and simply said, "Touché". I walked school halls, college campus, and didn't fall once. However, to this day I have this reflex when someone knocks into my crutch. I always swing for the shin. Even my five kids learned very early not to bump into my crutches accidentally. They could grab them to catch their balance, hold them instead of holding my hand, and hold onto them for safety. They never bump them accidentally.
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