Due to prematurity and then neglect by her biological parents, my daughter, now seven, was greeted into the world by a life full of challenges. The first time I saw her, she was three and a half years old and lying in an institutional bed with her nose tubed to an oxygen tank and her stomach tubed to a feeding bag as she lay in bed pulling strands of her hair out. No, this was not some orphanage in Romania, but the USA. Sounds terrible, looked terrible, but she was actually receiving the best care that could be given in the circumstances. Several weeks earlier, she been removed from her biological parents by an emergency court order.
"Caged in" to prevent her falling to the floor, everything she was given to try and amuse her, she threw over the top of her "cage" and into the opposite wall. What does "play" mean when you're still struggling to coordinate your mind and body and make your basic needs understood?
Weighing in at about 25lbs, she looked no more than eighteen months old. Unable to speak, caused by oral apraxia, she spent most of her time screaming in frustration when she wasn't sleeping. When she tried to stand or walk she would suddenly topple over. Nor could she crawl. She was like a floppy rag doll to hold on the few occasions she would allow you to hold her for more than a few seconds. Still in diapers, she behaved and sounded like a feral child who had been living with wolves. She behaved, physically and mentally, below he level of a six month baby. Also diagnosed as possibly autistic and/or with mental retardation, her condition was labelled global development delays. With no disrespect meant to the medical profession, I think really meant "the causes and prognosis of her condition remains unknown. "
To cut a long to cut a long story short, I became her foster mother. When the judge terminated her parents' rights, I was allowed to adopt her at the age of five. A single parent and in my fifties, let that rock your world. The good news? Over the last three years everything has changed. Parental advocacy, love, dedication, chosen medical care and therapy have opened doors I never thought would open. We discovered that inside her uncoordinated body, there was a perfectly intelligent child trying to get out. One who understood at her age level what was going on around her, even though she couldn't physically or socially express herself at that level. One of the challenges she faced was (is) sensory integration dysfunction. Originally, when placed on her back, she was unable to roll over like an eight month old baby. Her limbs had no coordination. Not even her fingers would work independently of each other, leaving her unable to communicate with sign language. Today, nearly four years later, she rides a three-wheeler, walks, runs, climbs and is learning to swim. Mostly not with all the grace of other kids(yet) but she can do it all without having to rely on a helping hand. She is learning to speak and eat orally. Her progress is amazing.
These are some of the books I read that educated me to understand and advocate for her.:
The Out of Sync Child
The Out of Sync Child Has Fun
The Special Needs Planning guide: How to prepare for Every Stage
The Learning Disability Myth
A Parents Guide to Development Delays
Life Skills Activities for Special Children
Poor Eaters
The Primal Wound
Adoption and Advocating for the Special Needs Child
Sign Language for Babies
Brains that Work differently
Attaching In Adoption
The Special Needs Child - Encouraging Intellectual and Emotional Growth
Assessment of Children and Youth With Special Needs
Married With a Special Needs Children
More Than A Mom: Living a Full and Balanced Life When Your Child Has Special Needs
Parenting Children With Health Issues: Essential Tools, Tips and Tactics
Sleep Better
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