Beating the Odds

Source:  Beating the Odds    Tag:  dysmorphic features children
Many of you who follow me on Facebook are aware of our journey with Nathan these last few months. So, lets fill the rest of you in :) Ever since Oct 2009, when we brought him home forever, I have noticed some learning and processing issues. Many were prevalent right away as I home school the kids full time. But, as the days, weeks and months went by we started to realize they were more severe then we originally thought. When we got home from our third and final trip to Latvia in March of this year I began to pursue answers. I came across the Marcus Autism Center by accident on the Internet. Nathan had been diagnosed with autism in Latvia but as someone who has an autistic brother I knew without a doubt this was incorrect. But, one diagnosis on his immigration clearance that did get my attention was FAS, or Fetal Alcohol Syndrome. I had general knowledge on this topic and was curious to find out more. So, as I was browsing through the services provided at M.A.C I saw they had a FAS clinic. They specialized in identifying and treating children affected with FAS and provided diagnosis, resources and insight for parents. So I immediately called and set up an appointment only to find out they were booking five months out. UGH. So I made the appointment and waited. During this waiting period I found myself daily beating my head against the wall during school time. The more in depth in school we got the more I saw his struggles. We could literally be reading 8 or 9 pages into a book and he would get to the word "a" or "the" and have no idea what they were even though he was reading words three times as big and complex. He wouldn't even be able to tell me what the letters were. I was extremely frustrated and stressed. What was the deal? As much as people want to blame things on the English Language barrier he had, this was positively not the case and just the icing on the cake. His math struggles were worse. The same problem would be presented and flipped/flopped throughout his paper and he would get some right and some wrong. I knew immediately his short term memory skills were none existent. Some days I was honestly surprised he knew his name. So, after many long months of praying, internal screaming, more praying and lots of waiting our day came. I was incredibly impressed with the facility the minute I walked into the door. I knew God had sent us to the right place. We had a six hour appointment and were to meet with 4 specialists in this field, a psychologist, geneticist, education specialist and a social worker. It was an amazing day of revelation! Although we wouldn't receive immediate results on the IQ, academic and psychological testing, the geneticist was able to immediately diagnose the FAS based on the physical/dysmorphic features associated. They measured about 10-12 different physical features that are associated with children exposed to toxic substances during the fetal stage. They graded each one on a 1-4 scale with four being the highest prevalence of that specific dismorphia. Once he was done, Nathan was escorted out of the room and he revealed to me the results. Basically, any score over 10 was considered mild Fetal Alcohol Spectrum Disorder, meaning some possible exposure of alcohol and some mild dysmorphia. A score over 15 was considered to be severe and actual FAS with prevalent dysmorphia. Nathan scored a 22. I was in shock. I had never considered him to have dysmorphic features. He didn't look anything like the pictures I had seen on the internet but he reviewed each one and they were all there. I couldn't believe it. Part of the puzzle was finally coming together! I left feeling encouraged, uplifted and hopeful of what was to come. I had to return in one month to receive the official report, results and recommendations. Well, yesterday was that day. I woke up excited and anxious and ready to hear it all. When I arrived I was handed a copy of the "rough draft" and we proceeded to spend the next hour going over every single page (12 in all). I knew the scores would be low but I wasn't quite prepared for the nitty gritty truth. Nathan's IQ score was 72. If you know anything about IQ scores I am sure your heart just sank. He was two points away from being considered "mentally retarded". WOW.(On a humorous note, I felt much like Forest Gump's mom sitting in the principals office LOL) She informed me that "If he would have remained in Latvia, he would have been eventually institutionalize as being handicapped". She also said not to mention if I hadn't been working with him the last year he would have quite possibly scored below 70. What an amazing God we serve to have intervened early on for His child! Many people I have shared this with were shocked because if you have ever met Nathan you would completely disagree! But, lets shed some light on why this is. According to the Vineland Adaptive Behavior test also administered, his daily living skills ranked ABOVE AVERAGE and his social skills ranked AVERAGE. Obviously, she said, his survival and coping skills are higher than normal kids because of the orphanage life. But, for a child 3 points away from being considered handicap this is a profound revelation. Most children who have low scores will have low scores across the board. Most children who have high scores generally have high scores across the board. This specifically shows a great amount of potential!! Not to mention on the IQ test, he was asked to define English words using English and because he is still learning, some things he wasn't able to articulate the way the test required. For example, he was asked to listen to group of objects and to tell what they are (basic classification). She said, "apples, bananas, oranges" what are they? His reply "GOOD!". When asked again his reply was "Healthy". You just want to smile and laugh. Although those answers are correct, they were looking for "Fruits". This revealed so much!! He was never given any early intervention nor was he taught basic preschool fundamentals!! Other areas that were revealed is his ability to comprehend so much more than he can verbalize back because of the lack of English vocabulary! When asked to pick up a pair of scissors and cut something, he could do that no problem. But when asked to define what the scissors do, he couldn't do it. His innocence is precious! Her thoughts? Let's consider this all a benchmark! They will see him back in one year and test him again and see how he improves! So, now with my report and my diagnosis, I am eligible and qualified to receive a range of services which before, no one will even talk to you without you having had an evaluation. There is a LONG road ahead but a hopeful one. But, knowing all of this I am not naive. I know the statistics that face him well into adulthood. Adolescents with FAS according to the National Alliance for Fetal Alcohol Syndrome,
"are often egocentric and do not comprehend that others have feelings related to their actions. They often have low self-esteem that is exacerbated by poor school performance, especially in the areas of math and spelling. They may experience mental health problems such as depression and suicide. The adolescent with FAS or FAE may experiment with drugs and alcohol. The girls may get pregnant or have multiple sex partners. These children often wander off and get lost or hurt because they follow their impulses. They are difficult for parents and school officials to handle, and are often incarcerated if there are legal problems."
The funny thing is, this doesn't describe him at all. Our psychologist was blown away with his demeanor and pleasant character. "Probably 90% of FAS children we see, especially those adopted internationally, have SEVERE behavior issues. They are aggressive and tend to have severe anxiety, depessions, and violent outbursts." Nathan is the most happy-go-lucky child she has met in a long time! He shows none of the ever so common behavior characteristics of a child with FAS and said "I'm telling you, you have a good egg!" Yep, I sure do! He has no knowledge or comprehension of the severity of his issues or of the life he led and was exposed to in Latvia. This child drank alcohol, smoked, used inhalentants, saw people stabbed, beat up and abused, saw a 12 year old girl give birth prematurely and then the baby die, ran away several times and was exposed to pornography weekly. Yet, he enters the room with a huge smile and will huge anyone he meets! He will make your heart melt instantly and the light that shines through him is blinding. You know why? One word...God. Before He placed him in his mother's womb He knew Nathan. He has carved out a narrow path for him to walk and his testimony will be GREAT!
This will be hard for some to understand. Because the truth of this world might be that Nathan has mental and physical problems associated with severe toxic exposure during fetal development. The world's truth will say he will be "playing catch up" the rest of his life and according to the psychologist "he will never graduate high school at 18 and obviously he's not going to Harvard". The world says he will probably experiment with drugs and alcohol and is 50 times more likely to become addicted. The world says he will be a burden and will probably never become a fully functioning, successful adult.
But I can say that all with a smile! You know why? I know a different truth!
Because the truth is with my God, anything and everything is possible. With my God, all our healed and set free. With my God, the blind see, the mute speak, the deaf hear and the dumb understand. With my God, Nathan will prove the experts wrong, will rise above the world's truth and shatter those statistics with the Sword of the Spirit-the living word of God. With God by our side, we will beat the odds.