Breaking the Silence
I am Macyeline Batista mother of a beautiful and tender girl named Gianna. When I found out I was pregnant it was the most wonderful and important day in my life, I loved Gianna since that moment, however not everything was easy. Two months into my pregnancy I was diagnosed with placenta previa and as a consequence, I was placed on bed rest until the completion of my pregnancy. Because of my continuous contractions, I was administered a drug on my thighs that would go through an infusion pumb. This passed a bulb (the same as a serum), a catheter which I myself changed every other day. With the help of God and a group of very special people, I was able to have a normal diet and a happy pregnancy despite all the adversites.
At 37 weeks of pregnancy I had my amniocentesis which resulted in the hardest 4hours I've ever encountered. The contractions were coming to quickly, and I was unable to have a normal delivery. The baby was growing on top of my arteries, and the possibility of them breaking and causing internal bleeding was a very real and scary threat. Finally, with the amnio results at hand, and with certainty that Gianna was coming along with healthy lungs, they proceeded to performed a caesarean C-Section, and thanks be to God Gianna came out in perfect condition.
In her first months she became allergic to regular milk, and later on to soy milk. Unfortuanately I was unable to breast feed and she was given alimentums of Similac throughout her entire first year. As the months went by I lived in a state of alert over the possibility that she might eventually be diagnosed with autism being that she has a paternal uncle with asperges syndrome and a brother who is now a teenager with a diagnosis of severe autism.
Gianna, began to say mommy and daddy by the time she was 9months. She was alert, had great eye contact and enjoyed playing appropriately with toys as much as she appreciated listening and dancing to music. At 11months she was already walking, however she also began self stimulatory with rapid hands flapping behavior, and at the age of one, she began to loose her verbal abilities. She began walking on her tippy toes, lost her interest in toys and began to not react to her name no matter how much I and every one else called her. She also became very isolated and didn't sleep at night, at this point we decided to take her to her pidiatrician. Her pediatrician placed a referral for an evaluation through Early Intervention and a Neurologist. Gianna was diagnosed with PPD/NOS (Pervasive Developmental Disorder / Not Otherwise Specified). We Immediately began with 20hours per week services of ABA (Applied Behavior Analysis), occupational, physical and speech therapy, all home services. I was also provided a wonderful social worker that would guide us through this very difficult process. In an attempt to help her increase her social skills, once she turned 18months old, we added pre-school services which she attended 3 times per week for 2 ½ hours.
All of the services really helped Gianna, and she soon began interacting again, she regained her eye contact and became more playful. Nonetheless, we soon discover she had adenoids and ear problems, and all the hard work that had been achieved were becoming blurring again, and she began to regress. she had an operation to remove her adenoids, and they inserted tubes in her ears. After the operation, it seemed as if she had been reborn again, she called me mommy while leaving the surgical room, and for the first time I realized that she is distant but not absent.
This journey has been like a Russian Roulette with plenty of ups and downs! Today Gianna recently had to undergo once more another adenoids surgery, and they had to remove her tubes. Although she has a very hyperactive behavior I see her really attentive, she knows what she’s doing, she understands me, and she tries to communicate with signs but most impotantly at the end, she’s happy and that’s what’s truly important. In between her babbling, some words often escapes, and I'm certain of all the potential my daughter has. She loves music, she has feelings and understand others, she is extremely loving and very silly.
I have found it very difficult being a Hispanic mother of a child that has autism, being constantly ostracized and finding very little emotional support from many in the Hispanic community. There is very little information and ignorance in this community, and in her defense I have become her voice.
When I look back I can say that the journey has not been easy, early intervention services have since ended, and she began regular term classes at a special education preschool. As far as home services, she currently only recives ABA at home after school. What I consider the most difficult challenge was having to face society. A society that keeps labeling children that have autism and other disibilities, without taking into account that a person could be different yet not less. Regardless of all the bumps we have been through and have yet to face, when I look at my daughter, I know it has all been worth it, and I would not trade this journey or her for anything!