Fetal Alcohol Syndrome
A permanent condition, fetal alcohol syndrome (FAS) happens when a person consumes any amount of alcohol during a pregnancy. Alcohol use during pregnancy can interfere with the baby’s development, causing physical and mental defects. Fetal alcohol syndrome is the most severe condition within a group of conditions called fetal alcohol spectrum disorders (FASDs).
IT Dawned On Me
I found a poem written by Emily Perl Kingsley entitled, “Welcome to Holland” as I sat in the Early Intervention Program’s waiting room at Legacy Emanuel Hospital in Portland, Oregon.
As I read it, the poem made complete sense. My first baby was a preemie who contracted cytomegalovirus while in the neonatal intensive care unit. It left her with neurological and developmental problems. I adjusted to that as I learned about her condition. Over 20 years later, I became the intentional parent/caregiver of three children who were expected to have special needs.
Since I planned for these babies, why did I seem so overwhelmed? I had raised a special needs child, had special training in special education, and fostering children who were affected by prenatal substance abuse, yet I so often felt lost.
Why? Why was I struggling?
I was committed to them. I could not give up and walk away. These were my children. I would make it somehow. I just didn’t know how. As they grew up, things kept popping up. Diagnoses were changed or tweaked. Individual Education Plans were made and changed. Then it dawned on me!
I planned for "Holland" this time and arrived in "Holland", but I didn't know that there was a part of "Holland" where German is spoken. I learned Dutch! I speak English. Now I am struggling to understand my children who have only learned to speak mere fragments of both. We had a communication problem complicated by the language spoken by those in the community. (The medical professionals, in this scenario.) The "community" spoke German and had a limited understanding of English and Dutch. We needed help!
In real talk, this is what that meant. I had alcohol and drug-affected infants, who had attachment disorders, autism spectrum-related problems, attention deficit disorder, and obsessive/compulsive tendencies—just to begin the list. There were cognitive problems. There were speech and mobility delays. There were things that could be remedied by early intervention therapy, and others that would not improve. In fact, some things would more likely than not deteriorate with time. Then there was a bout with Kawasaki’s disease and its related problems!
It was overwhelming!
Each child was on its own timetable. Each had to be trained according to his/her level of comprehension. Each had to be guided at his/her own pace.
Over the years, I learned I was not alone in my struggle; but until I made that discovery, I was alone. Grandparents and others who decide to raise other people’s children take on a heavy load. They think they know what they are getting into, but so often discover they really had no clue.
This blog is my experience in the crucible of getting special needs infants through childhood, the teen years and into adulthood. And as difficult as the journey was in the in-between years, I was totally unprepared for the crucible change that came with adulthood. We are still making the transition with my daughter who is now 49, twin girls who are 20 and a boy who is now 27 because their chronological and developmental ages are not the same.
Here, as I share my experiences, I hope you share yours so that we all can learn how to thrive in the crucibles of special needs children, especially those who are not your birth children. I chose it, and I am hopeful you will learn to thrive in yours, too. You can. It is SO worth every effort!
Some helpful sites to explore and talk about will follow.
It’s not “just” a bad day!
I’ve been raising children with varying disabilities for decades, and today I learned something I did not know, never knew I SHOULD know, never knew I needed to ask about. When you have children, there are just some things you learn as you go.
There are things you learn from other parents, your physician, a family friend, or even a stranger. But topics do arise, and you gain and apply the insight needed to parent better. And then, there are the times you make a discovery on the Web as you look for something else. This is one of those things, and I share it here.
A Primary Care Approach to Constipation in Adults with Intellectual and Developmental Disabilities