· How does it feel to be the parent of your child?
My child, Natalie, was diagnosed with FAS when she was three and is now seven years old. Many children with this disorder, mine included, are developmentally delayed, impulsive, stubborn, do not socialize with others well, and are not very coordinated. It is has been a constant struggle to take care of her and deal with my own issues at the same time. There is a heavy feeling of guilt that is always weighing me down because I now know that it was 100% preventable. Living with that reality is a personal struggle I deal with everyday. Natalie is such a sweet child and I wish people, especially the kids at her school, saw that as well. Her impulsivity and lack of social skills really limits her amount of interaction with peers, which just breaks my heart. Even though she has difficulty concentrating and remembering, she is still able to learn but her teacher seems to have given up on her since day one, which makes me so angry. I am in the process of switching her out of that class right now. It is a struggle but I love her so much and would not trade a single moment with her for anything.
· How is your child developmentally the same or different from other children at the various ages?
The most common physical traits of FAS are a thin upper lip, small eye openings, a smooth philtrum, or ridge between the nose and upper lip, and slow height and weight growth. Natalie has all the facial characteristics and her is shorter than average. Besides that, she doesn’t look like she has a disability. Her central nervous system is damaged, so she is often very impulsive and sometimes gets hyperactive. She also has a bad memory, which slows her learning down, but she is not that different from the rest of the kids overall. She loves to play basketball and draw pictures. She also loves Mexican food.
· What professionals/agencies do you deal with? What services are available to you and your child?
The National Organization on Fetal Alcohol Syndrome offers a lot of information and services to parents and teachers. There is a website for the FAS community resource center that a friend of ours told us about, and it has a few strategies and suggestions on how to manage behavioral problems. They also organize a camping retreat for children with FAS in Minnesota in August and we are thinking about taking Natalie there next year. We also have restite care, where someone comes twice a week to take care of Natalie, which gives me and my husband a chance to relax for a moment and not get too overwhelmed and strung out.
· How did you find out about the above services?
A friend suggested a few of the websites we visit frequently, and Natalie’s doctor suggested restite care and the financial services we are using.
· What financial burden, if any, are you experiencing?
Financially, we are doing alright. We are eligible for Supplemental Security Income (SSI), which also qualifies us for free medical aid through Medicaid. If it weren’t for these services, we would be having a really hard time because my husband at an office but I stay at home full time. Although we are doing ok right now, I worry a lot about the future and the difficulties we might face when she is high school or college because we have no savings or backup plan.
· What other information do you want to share?
I would like to share with everyone that although FAS is a disorder, it is not what defines a person. My Natalie is the sweetest girl and she is an absolute delight most of the time. There are special sensitivities and needs that we need to be aware of, but when these needs are attended to, she has just as much potential to succeed as anyone else.
Also, FAS is 100% preventable and many women out there do not realize the effects of drinking while they are pregnant. It is so important to spread the word about FAS and how it can be prevented because many people are not aware of it. If women are already pregnant and drinking, knowing about the symptoms is still important because the earlier it is diagnosed, the earlier the child can have support and treatment plans, which betters the child’s ability to function as normal and healthy as possible.
My Glogster: http://pcontractor.glogster.com/Fetal-Alcohol-Syndrome-/
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