Double ARC Testimonial of Kim Morris & Mauda
October 25, 2005
Good Morning;
Thank you all for being here today.
My name is Kimberlie Morris. I am in the final stages of adopting my daughter, Mauda-kae, the precious little girl you've seen walking around here this morning. After seeing her, you've probably asked yourself, "What connection could she possibly have to Double ARC?" I'd like to take a few minutes to answer that question.
Mauda-kae was born 7 1/2 weeks premature, with a birth weight of 3 lbs,7 1/2 oz. The umbilical cord was wrapped twice around her neck. She needed a feeding tube due to poor sucking reflex and was diagnosed Failure to Thrive. At the time of her birth, the prognosis for her survival was grave. She stayed in the hospital for three weeks. She was sent home weighing 4 lbs, 2oz, on a heart monitor, apnea monitor, and oxygen. On her sixth day at home, she coded twice and I had to administer CPR. She went back to the hospital for another three weeks. The first year of Mauda's life, we spent almost as much time in Dr's offices, ER's, ICU's, and Pediatric wards as we did at home. As I watched her struggle to survive, I felt totally helpless not knowing what to do to make her life easier.
Our birth mother was honest about her alcohol consumption during her pregnancy with my little girl. However, the medical team responsible for Mauda's care in the hospital, barely touched on what the road that lay before us could be like. They told me Mauda would likely have alcohol related disabilities. That was it. There was no information made available about what they might be, where to look for assistance, the need for early intervention, or where and how to educate myself on her condition.
It wasn't until Mauda was six months old that we were referred to our pediatrician, Dr. Michelle Irons. She was the first person who told me specifically what Mauda was likely to endure as she developed. With Dr Irons, I felt we had finally found someone who understood the road we were about to travel. She also referred us to Double ARC for support, education, and an official diagnosis.
Year two was pretty un-eventful. Mauda's health stabilized and she blossomed into a precocious toddler that stole the heart of everyone she came in contact with. She was progressing so well, that we didn't feel the need to seek a formal diagnosis. During that time we attended the first series of "Triumph Through the Challenges of Fetal Alcohol Syndrome" classes at Double ARC.
While Mauda didn't exhibit many of the challenges associated with FASD yet, it was an excellent opportunity for me to gain the education on what FASD is, how it affects my child and how it would impact our lives forever.
On March 4th, 2004, the bottom fell out of our world, as we knew it. Mauda had her first melt down. She had gone into the bathroom, took off all her clothes, and poured an entire bottle of aromatherapy baby bath on herself. She then began to scream, "Mommy help me". She ended up in a fetal position on the floor. As I tried to soothe and hold her, I could almost see her regressing before my eyes. After that, she began crawling instead of walking, went back to using a bottle, and her speech was slurred and unclear. She began to have strong negative reactions to my going to work and leaving her with a sitter. It was at that point, that Dr Irons recommended seeking help from a psychiatrist and counselor.
Because of her age, accessing the mental health services we needed was almost impossible. We were offered play therapy through one clinic, but there was a 4 - 6 month waiting list.
The one question I was asked repeatedly was " She's only 3, how bad can it be?" Mauda had become a danger to herself and to me. I lived in constant fear for our safety. It was then that I sought out a confirmed diagnosis with Double ARC. In the interim, she had to be admitted to a crisis unit for 6 1/2 days before they could stabilize her.
Mauda, like 80% of the children affected by pre-natal alcohol exposure, has no outward physical characteristics of FASD. You might think that is a good thing, and you're correct, in many ways it is. However, it is also very misleading. When people see a child like Mauda, they don't see the disability and challenges she suffers on a daily basis, so the expectations are great for the child to conform to what is considered to be "normal" behavior. Many times the child is misdiagnosed, undiagnosed, or mislabeled as incorrigible, bad, lazy, defiant or oppositional.
I can't impress upon you strongly enough the vital importance of what Double ARC does for families such as mine. I don't know how Mauda and I would have survived the past year and a half without the continued information, support and encouragement from everyone at Double ARC. Because of their amazing love and dedication to children and families affected by FASD, Mauda and I can be here today.
Kimberlie Morris
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