Fetal Alcohol Syndrome is preventable
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The first Fetal Alcohol Spectrum Disorder (FASD) Awareness day was celebrated on Sept. 9, 1999, when Matthew turned one. The ninth day of the ninth month was chosen so that people would remember that women should abstain from drinking alcohol during the nine months of pregnancy. Sept. 9 is observed as FASD Awareness Day each year by the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS).
Matthew is one of about 8,500 children born each year in Minnesota alone with brain damage caused by FASD, which is caused by the mother drinking alcohol during pregnancy.
"The placenta filters out most harmful contaminants and drugs that could affect a baby during the crucial months their little bodies are forming," Kay said. "However, alcohol goes right through the placenta. It does not protect the baby from alcohol."
Matthew's birth mother drank during her pregnancy, causing him to have permanent, organic brain damage. "The cure (for FASD) is simple - not to drink alcohol," Kay said.
In Matthew's case, FASD carries with it a host of medical issues that will affect Matthew his entire life. His disabilities include Attention Deficit Hyperactivity Disorder (ADHD), cleft lip and palate, scoliosis, asthma, allergies, developmental delay and a visual deficiency that causes his eyes to not work together.
Matthew initially came to Kay, a single mother and art instructor in the Staples Motley elementary schools, as a foster child. She later adopted him and he joined Kay and her daughter, Darcy, in their home near the Staples Motley High School building.
Matthew can be a handful. "FASD children are very verbal, they sound fairly smart, but they cannot do much abstract thinking. Matthew may know something today, but he might not know it tomorrow," Kay said.
He will often have trouble focusing and has to have a one on one paraprofessional at school all day. His days at school include vision therapy, special education classes, occupational therapy, adapted physical education, speech and many sensory breaks.
"His fine motor skills are extremely delayed. He can't tie his shoes and can't use pencils the way other 11-year-olds can," Kay said. "He draws at about a three year-old level, but he can use a computer fairly well. Pushing buttons is his specialty!
Kay explained that organic brain damage often means a FASD child such as Matthew cannot tell the difference between reality and fantasy. "Matthew comes up with trip stories all the time. He will tell you he's going on a trip to Puerto Rico and it may or may not be true. He has a great sense of humor and likes to joke and tease also."
Two months after Matthew was born, in November, 1998, he was hospitalized for "Failure to Thrive." He already had one surgery to close his lip, but his mother had failed to feed him adequately, as babies with cleft palate need to be fed differently because they have no suction. Matthew was brought to Kay for foster care after three days in the hospital. She had him in foster care for 18 months. "I adopted him on May 9, 2000. His birth parents did not do what they needed to do to keep him."
Kay at the time had attended several workshops and felt that she knew what to expect. She adopted him but not before being assured she could get full Medical Assistance benefits for him.
Matthew goes to Gillette's Children's Specialty Clinic in St. Paul three to four times a year for his scoliosis and orthodontic procedures and check-ups. He sees a psychiatrist, allergist and ENT specialist at least once a year. He has had 12 surgeries, including operations for his face, his ear tubes and a bone graft this past summer. Doctors closed his palate when he was one year old. "Before that, food came out his nose and clogged up his ears," Kay said.
Kay's dedication to her son is phenomenal, but she's not saying that. Following her divorce, and then a struggle with breast cancer, she felt another marriage was not for her. "I prayed to God to use me in some way. I hadn't planned to do foster care, but was asked to get licensed. Matthew was my first child in foster care and I didn't expect a baby. I didn't think I'd ever be able to adopt a child since I was a single parent. Now, though, I have someone to pour my life into. My life revolves around Matthew, his schedule, his hours, his needs. He can't be ignored or alone anywhere."
Raising this special needs child, Kay said, "is a full time job. I have to get him to his appointments, I keep his records, his medical history is over 40 pages long. I've got over five pages of notes on medicines he's no longer using."
For Matthew, routine is absolutely necessary. He looks to a regular schedule for comfort and security.
His emotions cannot
handle change and stress. "One night of lack of sleep
throws him off for days. He goes to bed at 6:30 at night and sleeps until 6:30 a.m or longer. He always needs 12 hours of sleep."
She carefully guards
his schedule and routine. "Some people judge me
and think I'm too obsessive about him. They don't know if one thing goes wrong, it's two or three days of issues."
"FASD is not an excuse for his behavior and his lifestyle, it is a reason for it," she said.
As each school year passes, Kay said, the gap between his academic ability and his age group gets larger. Despite that, he shows some progress in his day to day functions. "He's brushing his own teeth now and doing some daily care. His ADL's (Activities of Daily Living), such as tying shoes, brushing teeth, getting dressed, etc., are slowly increasing in number.
"For FASD kids, their education is learning life skills, which will be more important than academics."
Cause and effect is an unknown to Matthew. There is a disconnect in his brain that causes him to
fail to understand the consequences
of his actions. "He has been clawed by my
sister's cats many times, but when we visit, he still tries to hold them. He's broken his arm three different times, once when he slipped on ice and he does remember that…it hurt."
"He has a good memory for math and spelling, but sometimes his impulses take over. One time we went to a golf meet where Darcy was playing, he started cheering loudly. Darcy was a bit upset and we went home!" He's been to football and basketball games, so he thought cheering was what he should do.
Kay said its important
that they tell Matthew the
truth about his condition. "Why do I need someone
with me all the time?" he has asked. That's when I remind him his birth mother drank alcohol while you were in her tummy."
What does the future hold for Kay and Matthew? Hitting puberty will be a challenge, she knows, because Matthew will have all the hormones of a teenager, but without the mental capacity to handle it.
"My goal will be to keep Matthew in my home for as long as possible," Kay said, but she knows that by the time he's 18 or 19, he will most likely be in a group home. Only 8 percent of FASD people are able to live on their own," she said. Most FASD will face mental health issues and need assisted living. Many will get into trouble with the law, be victims themselves of violence and/or sexually troubled.
Matthew has a Personal Care Attendant or mom with him when he is not in school or sleeping. He needs an "external brain" to help him make good decisions at all times.
Despite the challenges, Kay continues to work with Matthew, with both of them learning at the same time. She is constantly researching any new information on FASD, and she is involved in the local FASD diagnostic team at Lakewood Health System. Kay recently attended a seminar on FASD put on by John Hays, a noted authority on the subject.
"I am so thankful for the support that comes with adopting a child with special needs. The county and the state have many resources to use. I have wonderful friends and family that support us also," added Kay.
