When your disability is invisible to the world, you are often judged unfairly for any breach of self-control or inappropriate behavior. This type of prejudice is witnessed all too often as I watch my special needs daughter, Savanna, struggle to navigate and blaze her own trail through life.
As an infant, Savanna suffered greatly while in the care of her birth parents. Actually, Savanna’s suffering began even earlier…when she was still an unborn, developing little soul. Savanna’s birth mother is an admitted alcoholic and drug abuser. Pregnancy apparently presented little motivation to abstain from these toxins; ingesting them with little regard for a developing fetus. After birth, the level of neglect continued and left Savanna riddled with bruises and weighing only 11 pounds at nine-months of age.
The doctors said Savanna was lucky to have survived.
Knowing that Savanna was developmentally delayed, we assumed that with proper attention, things would correct themselves and everything would be fine.
A team of developmental specialists evaluated her during this time and were thrilled with her progress. We were told to keep doing what we were doing, good luck, and basically…have a nice life! Nice words, but Savanna was still delayed. Just maybe not enough for their services.
One day a little bird whispered in my ear…actually, it was a social worker who stopped to talk to us while we were shopping at Wal-Mart. She stopped to tell us how cute our kids were. This social worker immediately said that we must be Savanna’s adoptive parents, because she has fetal alcohol syndrome.
Naturally, I was stunned. Not because I knew what this was…more because I had no clue. This lady explained how Savanna’s facial features fit the profile of a child with fetal alcohol syndrome; and she properly guessed that Savanna was developmentally delayed. I gleaned enough information from this stranger, to set my mind racing, until I could get home and start searching for information on the internet.
Sure enough, the information I found concurred with that of the social worker. Being concerned for Savanna’s well-being, I took her to the pediatrician-who had never mentioned this possibility before. The doctor agreed that it was a likely diagnosis, but it was already water under the bridge. Expect Savanna to be delayed in all areas across the board and you won’t be disappointed. Okay?
Hmmm…no advice on what we should do now or information with regard to what may lie ahead. After repeatedly being told Savanna will just need more time than the average child, I wanted a more definitive answer. I wanted to have an idea of where she was developmentally and were there any undiscovered concerns that might be impacting her progress.
It wasn’t until just before her 5th birthday, that my questions started to get some answers; the day her face became paralyzed by Bell’s Palsy.
That experience marked the beginning of our gaining a fuller understanding of Savanna’s invisible disability; one that was beginning to become more difficult to ignore. We began relationships with neurologists, therapist, psychologists, and developmental pediatricians.
Within a few months of being afflicted with Bell’s Palsy, Savanna developed a Seizure Disorder and was also diagnosed with Chiari Malformation and Severe Receptive-Expressive Language Disorder. Today, at age 6, her development continues to lag behind her peers as the overall effects of Fetal Alcohol Syndrome creep further into her life.
We do what we can to help Savanna navigate her world. Her struggles are our struggles. It breaks my heart when I see the level of frustration she experiences each and every day. It also breaks my heart when I witness strangers scoff as they witness a melt-down, unaware of Savanna’s inner struggles. She is the sweetest little girl, doing her very best, and I am honored and proud to be her mother. I only hope that others can look past her disabilities and see her for the wonderful person she is.