I am the mother of 5 children who were exposed to alcohol before birth. My children run the full spectrum of affectedness. Fetal Alcohol Spectrum Disorder is a lifelong condition. Throughout their entire lives they will struggle with a range of difficulties…
- Impulsivity – Some of my children lack the ability to think ahead. They cannot see that an action will have a consequence. They live completely in the moment. They do not believe that what they did 5 minutes ago is any more relevant than what they might do in 20 years.
- Learning Disabilities – Some of my children struggle with academics. They may learn something at school in the morning and by the time lunch rolls around they have completely forgotten or misunderstood the concept.
- Difficulty with judgment – Some of my children think in black and white. They may know the facts about a situation but lack the ability to see all the repercussions of a certain decision.
- Hyperactivity – One of my children, in particular moves like a little human hummingbird. The amount of movement is enough to make me dizzy.
- Attention – For one of my children, lack of focus is often seen as defiance or unwillingness. It looks like they don’t want to do the task at hand when in reality their brain is just distracted.
- Memory – Memories can become distorted, misunderstood or completely forgotton. For one of my children, any direction given verbally will not make it into her long term memory.
My children don’t look any different from a typically developing child. The “invisible” nature of this disorder can compound the devastation it brings. A child with an FASD may be misdiagnosed with any number mental illnesses. A child with an FASD may be misunderstood as a bad or disrespectful child.
I feel scared for my children. I’m worried that they will get in trouble. I’m afraid they will be taken advantage of. My heart hurts when they are not welcomed by others and it breaks when they are frustrated with their own challenges.
Recently I’ve been following a story that gives me hope. I found the story through a Facebook page on FASD. I love the page because it is a mixture of parents raising children with FASD and adults who have FASD. It is so exciting to see a community come together to encourage one another and raise awareness. I love the way this group of people chooses to take away the stigma of FASD. They talk about the struggles openly and without shame. This is where I first heard about Andrew Peterson. He was born with FASD and struggled throughout his childhood. He began running and found a way to persevere. He is now one of the finalists in the Runner’s World Magazine Cover search contest. If he wins the contest he will be the first person with a disability to be featured.
I would encourage you to read his story and vote for him here.
Here is what he had to say when asked why running is important to him.
“Running is important to me because I can succeed. Although I like to have a partner, I can always run on my own – either in my neighborhood or on a nearby trail. I am able to push my body and feel good about myself. I like that feeling. For several years I have motivated many Special Olympics athletes to believe in themselves, train harder and improve their times. Running has also allowed me to inspire hundreds of people on and off the track. Last year I started speaking to high school students about including others and accepting them.”
There are three things that just jump out at me…
- I can succeed.
- I feel good about myself.
- I Inspire others.
This is what I want for my children. This is what keeps me up at night. They will always have FASD. There will never be a time that their brain will heal itself. Basic things in life will always be a little more difficult. I understand that and so do they. My heart’s desire is for my children to one day be able to say that no matter the circumstances, I can succeed, I can feel good about myself and I inspire others.
If you are pregnant, please remember there is no safe amount of alcohol during pregnancy.
If you are a parent of a child who was exposed to alcohol, please don’t forget, there is still hope!
Are you parenting a child with FASD? What struggles have you had to overcome? Share your story with us.
