The Relativity of Time

"To everything there is a season and a time to every purpose under heaven."

~ Ecclesiastes 3:1

Alex Update

A few months ago, I posted about my son's special needs. If you missed that post, the short story is Alex was adopted from Russia and has been diagnosed with FAS (Fetal Alcohol Syndrome). This means that he has organic brain damage because his birthmother drank when she was pregnant with him. I chose to share Alex's story to make me accountable. Alex was diagnosed in May of 2008, and 18 months later, I was still in denial. I was actually still searching for another diagnosis for him.

Now that I have accepted this diagnosis, we are on the path to a happier life, and because I am researching the correct syndrome, I am actually finding some things that work. The organic brain damage for Alex means that he has difficulty with transitions, impulsiveness and distraction. My telling him most anything verbally is usually counterproductive. He can hear what I say, but the message is fragmented and lost as it travels through his brain. This simple picture schedule and clock have made our mornings far more peaceful. The only catch is that Alex is a very concrete thinker. We eat breakfast at 7:15. He will not see 7:16 as also time to eat breakfast. We eat breakfast only at 7:15. (If you have seen Rainman - Ray's Judge Wapner at 4:00 requirement is a great visual of this.) Fortunately, I quickly learned that I can reset the clock to match the time needed.

Our clock now travels with us wherever we go. Last week, for the first time ever, we left the Target toy department without one single tear or complaint. He was so quiet that none of the other shoppers knew we were leaving. It has taken me way too long to realize that most of our battles are due to a lack of understanding not defiance.

Many people respond to me with, "All kids have trouble with transitions," or "my son is also impulsive and he is fine," or "He's a just a boy." They try to console me and help me feel better. On the contrary, it makes me feel worse. Blanket statements like this minimize our challenges and take away from Alex's successes. Denying the syndrome doesn't make it go away. Believe me, I have tried.

So, in our near future, I am hoping for a more peaceful child who can be calm because I helped him feel comfortable and safe. I am looking forward to trying to increase his attention span, and we will be working on improving eye contact. And just in case you are worried, I will not be pursuing a career as an illustrator - yet :).

If you would care to learn more about FAS, I would recommend Fantastic Antone Succeeds!: Experiences in Educating Children with Fetal Alcohol Syndrome Edited by Judith Klienfeld and Siobhan Wescott.

SFA

Before we had kids, my husband and I LOVED to watch TV, and one of our many favorites was Everyone Loves Raymond. I keep thinking about the episode where Marie found Ray's junior high diary. She was upset because one of the entries read, "I EHAT my mom." Ray had written in a code that he thought his mom would never be able to crack. Moms are pretty smart though, and sure enough, Marie cracked the code.

I have been thinking about this post for a few weeks now. I need to share part of our story, but I just don't want to. I wish I could sugar-coat the story or write it in code, but that would not count as coming out with the truth. My son Alex has FAS, and I would rather write it in code - SFA. If you didn't know, FAS stands for Fetal Alcohol Syndrome. He was diagnosed with this in May of 2008, and the diagnosis greatly influenced our move to Florida.

Basically, his birthmom drank while she was pregnant. Of course, we don't know how often or how much, but we do know that damage was done. FAS is a spectrum disorder as the affects can range from minor to severe. Whatever is developing in the baby when the mom is drinking is what is impaired. In our case, the FAS has caused permanent brain damage. Alex's left and right side of his brain cannot communicate, so although he may know rules like "We don't hit our friends" his brain cannot stop him from hitting before it is too late. It causes many problems in preschool because he can tell you the rules and the results for breaking those rules. As a result, he is disciplined as if he can control these impulses. In many ways, we are very lucky. Alex has a lot of strengths. He is very bright and loving. His speech is great, and he loves to read. I am hoping this will help him be successful in school.

I honestly don't know why I am having such a hard time accepting this. When we decided to adopt from Russia, we knew this would be a possibility. I even asked several of his doctors along the way if he had been affected by this. It is very surreal. I wasn't really surprised to hear this diagnosis, but at the same time, I was not expecting it at all.

In the five steps of grief, Step One is denial. I have mastered that. I have been denying this for almost a year and a half. In fact, I tried to blog about this a few months ago, but I was only able to tell you about some of his related conditions.

Step Two is anger, and I am doing great with that one too! I am mad at God - largely because I keep asking him to help me be more patient and graceful with Alex. I feel like he is failing me. I am mad that this happened to my child. I wonder what his life without this would be like. I am mad at Russia. I am most mad that this was preventable. I do not want to speak out for this. Why not autism? Aspergers or OCD? Sadly, I can no longer sit by and just be angry anymore. I need to protect my child and be an advocate for him. One of my favorite verses in the Bible is Esther 4:14, "For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father's family will perish. And who knows but that you have come to a royal position for such a time as this?" Ignoring this for the last 18 months has only caused me stress and heartache. I give up. I will acknowledge this.

I have probably sinned in my anger with God, but I do still know that only He holds the answers for us. I believe He is not rushing in to save us so that we will find a long-term solution instead of a quick but temporary fix. I do believe God pieced us together to be a family, and I do hope to move on to the next step soon. It will just take time and chocolate. Until then, I ehat FAS, but I deeply, fiercely love my child.

Judging Alex

“Judge not, and ye shall not be judged.” 2 Rachel, 27:12. OK, it’s not really from the book of Rachel, that’s just an inside joke from our Circle Bible Study. The verse actually comes from Matthew 7:1, and as a former gossip girl and judger of many, I have often pretended this verse didn’t apply to me. As I grew up and faced more trials, I learned that my rational actions and decisions probably looked crazy to most people: i.e. crying in airports when I was taking infertility drugs. I now understand that God wants us to leave the judging to him because we cannot possible know enough about other people’s lives to accurately judge them.

I say all of this because I am constantly being judged by strangers. Preschoolers draw attention. It is just a way of life for this time in their lives, and my son Alex seems to draw a lot of attention. Everywhere we go, people know who Alex is because he either strikes up a conversation with any given stranger, or they hear me yell his name as I run after him. Alex lives life to the fullest, and pushes the limits whenever possible. Strangers often see Alex as a child whose parent doesn’t make him mind, but that isn’t reality. I know more about him than anyone else, and most of what I know is kept secret.

Denial is the second stage of grieving, and I have been in this stage for over a year now. Last May, we took Alex to a specialist in Chicago because we had some concerns about a few developmental delays. The short story is this: Alex has some adoption-related special needs. They gave us two diagnoses. One I agree with, and one I wish wasn’t true. They are experts in this field of study, so I am sure they are right, but I like to pretend they aren’t.

I was actually hoping they would tell me he had ADD, which they didn’t. I just wanted someone to tell me that Alex has way more energy than any other child ever. The one diagnosis everyone agrees on is this: Alex has SPD, sensory processing disorder. He is a sensory seeking child, who loves to touch everything and always needs to be moving. He loves running and is in heaven if someone is chasing him. If he doesn’t have anything to do, he will chew on anything close. If nothing is close, he will chew on his fingers. Since I didn’t agree with their other diagnosis, I took Alex to another specialist last winter. She said that Alex does have ADD, but she wouldn’t formally diagnosis that until he is 5 or 6. Our family doctor still believes that there is another diagnosis out there, maybe something on the autism spectrum. I think he is probably right.

In two weeks, Alex will have a screening for preschool. I am going to have to share this with them, and I dread it. I am afraid of two things: What if they say there is nothing wrong with him (and all of the unmentioned challenges we face every day are typical, and it’s all in my head)? OR What if they say he does have special needs (they probably will, but I am still in denial!)? I live with a strange dichotomy: I don’t want Alex to have any letters explaining his behavior, but I don’t want to believe his behaviors are typical.

Here is another paradox. I believe people are judging me based on how my child behaves, but if they knew what I knew, they probably wouldn’t judge him. I don’t want anyone to know about his special needs, but they need to know so they can better understand him. I just think he is so great, and I don’t want anyone to see anything less than I see – a terrifically wonderful “perfect for me” kid.