Wednesday, May 2, 2012

diagnosing Sydney

I told you how I came to discover Tate had autism in my last post. You can read about that here: This post will be about discovering Sydney’s diagnosis. It was a little more complicated. 

When we met Sydney in Russia she was eight and a half months old. She was lethargic and appeared developmentally delayed. We asked a lot of questions and were told they had kept her awake for us, long past her nap time. Then we arrived right after she had fallen asleep so they woke her for us. It made sense. The next day Sydney was different. She was very active but still seemed without any “sparkle.” I was heart sick. I was fairly certain our baby girl was, at the very least, developmentally delayed. We asked a lot of questions. Sydney had been born about a month premature, according to them. We were assured Sydney’s birth mother had not taken drugs or had any alcohol while pregnant. Her birth parents were only “guilty” of being poor. They could not afford to take her home, as they already had two other children to feed. 

We could see 14 cribs in the room Sydney was in, and we could see another room full of cribs too. We saw 3 nurses/teachers to watch over all those babies, so it was apparent to us Sydney was not getting much attention. We figured part of Sydney’s lack of “sparkle” was due to neglect. We voiced our concerns to Sydney’s doctor through an interpreter. He seemed to be the man in charge.  He told us he would hire someone to come in and play with Sydney and hold her for one hour a day if we left him $100.00 to pay for it. That was the best hundred dollars we have ever spent. We were amazed at the difference eight weeks later when we returned for the adoption date. Sydney had a light behind her eyes we had not seen before. She was still not jabbering as a ten month old baby should have been but she was much more alert and interested in her surroundings. I was very encouraged. (I blogged about this again later in more detail. See this link: A Sparkling Personality if you would like to read more.)

Sydney, age One
When we got her home from Russia, one of the things that worried me the most was Sydney’s indifference to people. She did not want to be held and she fought it.  She really didn’t like to be touched at all. I forced myself on her. The first few months I rocked her and held her while she kicked and screamed. After a few months she didn’t hate being held so much but she didn’t seek it out. We taught her to kiss us but it was rote; she also kissed the furniture, the walls and the floor. She didn’t seem to feel pain and she didn’t seem to “need” people. I started researching and found Reactive Attachment Disorder (RAD.) I think she was around two by then. We took her to a Child Psychiatrist and asked his opinion. He asked a lot of questions and watched her play. We were relieved to hear him say Sydney did not fit the criteria for RAD. He thought her issues were just from the first year of neglect. He said we were doing all the right things and encouraged us to keep at it.   

Sydney had a lot of physical things going on so I was taking her to doctors and asking questions. We visited the pediatrician several times then started seeing some specialists. Sydney had some very sensitive skin which was always breaking out in rashes, so we took her to an allergist and a dermatologist for help with that. Sydney’s eyes watered a lot and she seemed very sensitive to light. We took her to get her eyes checked by a pediatric eye doctor. He was very concerned by what he saw.  Her retinas were not orange as they should be, but spotted. They looked like the skin of a leopard, he said. He made us an appointment with a doctor at Children’s Mercy who specialized in the retina. He also urged us to have genetic testing to determine if Sydney’s spotted retinas were linked to a genetic disorder he named. Doctors at Children’s Mercy did the genetic testing and found no problems. The specialist looked at her retinas and said they were abnormal but would not cause her any problems. However, based on many other things those doctors saw, they were able to give Sydney a diagnosis. It was apparent to them that Sydney’s birth mother had consumed alcohol. They pointed out all the small things other doctors had ignored, and said those things were signs of Fetal Alcohol Syndrome. Sydney lacks toe nails on her smaller toes.  Her eyes are mismatched in size. Her head size is very small.  One of her elbows hyper-extends. Her pain threshold is extremely high and she is hyperactive. All those things were probably caused by an exposure to alcohol in the womb. They also suspected Sydney had been born more than one month premature. 

We then learned many symptoms of RAD are the same for FAS and often parents “guess” at RAD before they get an FAS diagnosis. One of the doctors also called Sydney “hyper vigilant.” I had never heard the word before but it fits Sydney better than any word I have ever heard. She is so watchful. She notices everything. If a person changes their shirt or shoes and walks back into the room, she asks them about it. If someone rattles a candy wrapper in the next room, she hears and knows what they are doing. If I move a small item from a shelf, she notices immediately upon entry into a room. When we go to her doctor appointments in Kansas City, Sydney can tell me where to turn, yet I still rely on the GPS to find the office. She remembers every detail about everything and she cannot be fooled. It is unlike anything I have ever seen a child do. 

When Sydney got the diagnosis of FAS she was still a toddler. In some ways it was hard for me, like the night I found autism on the Internet when Tate was a toddler. However, in other ways it was a relief.  If you know what is wrong then you can figure out how to deal with it. I had tried everything to teach Sydney how to behave and had failed to make much progress.  I had read so much about autism and I knew what I needed to do to help Tate. I figured I would go home, read books, talk to some experts on FAS, and form a plan. It didn’t go as smoothly as I hoped. Tate is quiet and easy to teach.  Sydney is loud and cannot sit in one place for more than a minute so she is hard to teach. There is not much written about FAS either. There isn’t a recommended, research-based, early intervention plan to follow like there is for children with autism. I have had to “wing it” a lot. There were a couple of years between receiving the diagnosis and trying medication for Sydney.  It was rough. I lost my cool daily, even hourly.  I embarrassed myself often in front of my older children by doing a lot of the wrong things with my littlest one. I loved her but didn’t know how to deal with her. I went to bed every night exhausted, physically and emotionally. I would wake up every morning determined to do better.  By mid morning I was at my rope’s end again. One of the things I told myself constantly was, “A bad day here is better than the best day Sydney would have had in an orphanage.” That way I felt less guilty about not being perfect and not giving her the patience she needed. 

I used to get mad if I thought of the lies we were told about Sydney and her medical history. I used to get mad at myself because I did not educate myself about the signs of FAS, and I trusted people I did not know. The doctors in Russia surely know what the signs of FAS are. I assume they lie about the babies’ health so they will be adopted. At Children’s Mercy the doctors told us they were seeing lots of babies from Russia with FAS.  I don’t get mad about it anymore. If I had known better I would have “shopped” for a baby and our lives would be different, I know. Then where would Sydney be? I could not love Sydney more than I do now  I adore her. I cannot imagine my life without her. Would I “fix” her if I could, and heal the brain damage and other things alcohol did to her body? Of course I would!  Would I trade her today for a different eight year old? No, not any sooner than I would trade one of my other six children or you would trade one that was biologically yours. Sydney is a blessing to me.

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1 comment:

  1. Bless your heart Lisa. What a heart filled story. Your story made me smile and cry. What an amazing woman you are. I pray that you find the patience each day. Nobody is perfect, remember that. What you are doing is brave and inspirational.