Regarding Natalie....

I received a few comments regarding my post on Fetal Alcohol Syndrome yesterday and several emails. First, I want to make sure everyone knows I received Natalie's permission (and encouragement) before writing yesterday's post. Now, I want to tell you "why" she wants people to know about her disability; I believe you will find this extremely fascinating:

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Hope and Charlie have Down Syndrome and the DS physical features make them readily recognizable as disabled children. Upon seeing them, immediately, a certain expectation is automatically placed upon them by others. Natalie, on the other hand, has FAS and has no physical features that would cause people to 'size her up' and form an opinion before getting to know her.

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Many might think that a blessing, but actually it has become a curse to Natalie. On many occasions, she has noticed people roll their eyes at her unintentional behavior and has wished she had a physical marker like Hope and Charlie do, or like a child in a wheelchair has. As a result, she watches the reactions of people closely and strives to live within their "approval range" which is terribly difficult for her.

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Put yourself in Natalie's shoes for a moment with me: You are with your family in a restaurant and meet a new family (The Jones') for the first time. Your family decides to join the Jones' for dinner, and you realize they do not know about your FAS. To avoid being embarrassed, you decide you are going to work very hard throughout the meal to act normal, and the way you will gauge your "normalcy" will be through watching the reactions of everyone at the table. Beforehand, you ask your mom to give a certain look (cue) that will help you know you are either doing good or need to slow down. In addition, you plan to watch the Jones' facial expressions closely to make sure they are approving of the words you speak and the way you speak them.

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Stressful, huh? Before taking off Natalie's shoes, stop to realize that you have not been born with the mental ability to know staring at a person who has a gigantic mole on his nose is offensive, so you stare without realizing it until someone reminds you to stop.....and Mr. Jones has a HUGE mole on his nose. You haven't been born with the ability to know it is not socially acceptable to go to the restroom four times during a meal just because the soap in the bathroom smells fresh after you use it, so during the meal with the Jones' you are up and down like a jackrabbit going to the restroom and returning to ask everyone at the table to smell your hands. Mrs. Jones has a magnificent purse decorated with shiny beads. She puts her purse down right beside you. Throughout the meal, you look at it from time to time and finally decide to touch it. You start playing with the beads, then you wonder how the beads move when the zipper on the purse is pulled back and forth, so you try that too. When the zipper is open, you notice a mirror and wonder if your teeth are still looking clean, so you pull out Mrs. Jones' mirror and start looking at your teeth. Finally, your mother coughs, you look to her and she motions for you to return Mrs. Jones' purse, you promptly obey and then realize going through Mrs. Jones' purse must have been wrong....and you feel sorry. You try to make it up with the Jones', but don't know after turning eleven it is no longer proper to ask people: "Do you want to be friends?", and before the meal with the Jones' is over, you have asked every single member of the Jones family if they want to be your friend. By the end of the meal, although you have watched cues from your mom and facial expressions of the Jones family, you realize your new dinner buddies are avoiding conversation with you and turning away when they see you are about to speak. You get in the car with your family and ask: "What did I do wrong?"

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Now put yourself in our shoes for a moment. We try to explain rules of acceptable behavior to Natalie, what is deemed appropriate and what is not. But we know, through experience with her, the "rules" she tries to remember and tries to incorporate into her life, just will not stick. Not for lack of effort or lack of work, but lack of ability. It makes us sad for her. However, in the van, after having dinner with the Jones', we would never let Natalie see our sorrow for her. Instead, we would recount the evening in hysterical laughter, telling her how funny she is. Before long, Natalie would be joining in laughing at herself too.

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To close, the visibally handicapped have problems people expect since their handicap can be seen outwardly. At one time, when I wore one of my Down Syndrome tshirts, Natalie mentioned she would like to have her own tshirt that reads: "I Have Fetal Alcohol Syndrome and I Can't Help It". While I am not as familiar with autism, I would assume autistic children encounter the same problem. Many of them look completely "normal" and some act fairly typical until you spend a lot of time with them.

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Please use this post to open your hearts even more to the disabled. My hope is you will count your blessings today (and every day), giving thanks to the Father. Natalie was fortunate to escape a Russian orphanage and find a place in our home----we love her (and will continue to love her) no matter what. However, there are an estimated one million orphans still in Russia, living day to day with no hope of escape. Statistics show the majority suffer physical and sexual abuse from the age of four until being released into the unknown "real world" at age seventeen. Upon being turned out of the orphanage, they have little education and no social network of friends. Half commit suicide the first year, and the others are taken into drug/prostitution enterprises.

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"I lift up my eyes to the hills.....where does my help come from?" Psalm 121:1

If you haven't taken a minute to put a dot on the map below, please do! A good friend gave that to Hope as a gift so we could "show her" all of the prayer dots!