Privacy: hiding the diagnosis or hiding from the diagnosis?

I hate privacy laws. The purpose is to keep people safe I suppose, but they do not work that way for my two kids.  Privacy laws keep schools from telling people about my kids’ disabilities. A substitute teacher is not supposed to be told a student has autism. How can that possibly work in the student’s best interest? In an emergency the adult in charge, would assume the student had age appropriate skills to cope. At the very least, the child does not learn as much on the days there is a sub if the sub does not know there is a challenge of some kind for that child. 

Tate in Kindergarten

I did not know this when Tate began school. I assumed all adults who came in contact with Tate, in any capacity, would be informed of his disability and educated a little about autism. That is not how it works due to privacy laws. Only the teachers working directly with Tate or Sydney are supposed to be told about their diagnosis and behavior issues. I had to tell my kids’ librarians, music teachers, P.E. teachers, art teachers, and secretaries about their disabilities myself. I even stopped the janitors at Sydney’s school and explained what her disability was and asked them to step in if they saw her behaving in an inappropriate way. 

Sydney and Tate

This year, I insisted both my kids’ IEPs state that substitute teachers have to be told about my kids’ special needs. It became very important to me after walking into a P.E. class when Tate was in third grade. He was crying, rocking and stimming while his classmates were playing a sort of dodge-ball game. It was chaos. At the front of the room was a substitute teacher who had not been told Tate had a disability. At that point, Tate did not have a support person with him in P.E. either. I was still fighting that battle. I could write volumes about the power struggle that went on over para support, and I probably will (but not today.) It is not quite as urgent that a sub be told about Tate’s disability if he has para support with him. However, I would still like every adult who has any part of educating (or keeping Tate and Sydney safe) to understand there is a language delay and behavior issues that need to be considered. 

We live in a very small town and don’t plan to move in the near future. The more people in town who know about Tate and Sydney and their special needs, the more people I will have watching and helping to keep them safe. They are less likely to be bullied by peers, if the peers and their parents, understand my kids have a disability, as well. 

Sometimes schools do not even show a student’s para the student’s IEP. The para works with the child more than any other person. The RR teacher, the classroom teacher, and the para are part of a team. If the para is not “in the loop” and does not even get a look at the IEP how are they supposed to fully understand the child’s needs and the goals set for that child? I have heard the arguments. First there is the privacy policy argument. And second, paras are not necessarily educated or trained as a teacher. Oh brother! If they were not intelligent adults, able to help educate my child, they would not have been hired. If they are not worthy of reading my kids’ IEP then don’t hire them in the first place. It is not a secret that my kids have an IEP. I want them read by everyone so they can be followed. 

I have asked that Tate’s classmates be educated about autism and the schools have been really cooperative in giving Tate’s classmates age-appropriate information each year. I wish there was a way to share information with Sydney’s classmates about her disability as well but how do you explain alcohol consumption during pregnancy to seven year olds? For now, Sydney knows she is adopted. She knows what that means. She knows what her pills are for and what they do and she knows she feels better and is able to think clearly when she takes her medicine. When the time is right, we will explain to Sydney what ADHD is and what Fetal Alcohol Syndrome is. How fair would it be to keep it from her? 

I know a parent who has a child with high-functioning-autism. The kid is several years older than Tate and has more social skills than Tate, and more language. He has never been told he has autism. Now THAT is a privacy policy. It must be a pretty difficult secret to keep. I have chosen to be very vocal about Tate’s autism. How much damage could be done if he did not know? I wouldn’t want to be present the day he found out he has autism, if he was never educated himself about what autism is. Tate hears the word autism every day and has since he was diagnosed. He does not have an accurate idea of what autism is because he doesn’t have that much language comprehension, but if he did, I would explain it all to him and be happy to. He does know he has something called autism. He sees he is different than his peers and he knows he needs more help than his peers.  He can see them doing lots of things he cannot do and he sees them understanding things when he does not. Writing those last two sentences caused me to stop and think: Tate probably has a pretty good idea of what autism is.




This is a post explaining how I educate Tate's classmates about autism and how helpful it has been: What is Autism? or Why Does Tate Act That Way?

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What is discrete trial training?

As soon as I discovered that Tate had autism, I began researching treatments. There are so many ideas out there. I wanted to find a treatment that was proven to have results. I wanted a “cure” for autism. I read the book "Let Me Hear Your Voice" by Catherine Maurice. In her book she told of the huge differences between her children before and after the therapy she provided. I wanted recovery for Tate! The only research based treatment I found was called Applied Behavior Analysis (ABA) therapy. This was the same therapy that Maurice had talked about in her book. The initial research was done by Dr. Ivar Lovaas and published in 1987. Lovaas had made great gains with the children he had worked with.  “Best practice” was 25-40 hours a week of discrete trial. Discrete trials are well-defined tasks with a beginning and end. Big tasks are broken down into small steps and are taught systematically. The end goal might be for a child to be able to recognize and match shapes, but it would be broken down into very small pieces. It might start with the child holding a card that had a black circle on a white background. The teacher would give very simple instructions, often just one word like “match.” The child would need to match the card he was holding to a card in front of him. There might be only two cards in front of him at first: one with a square on it and one with the circle that matched. When he mastered that task, a third card would be added to the table, then a forth card, making the task harder. When the child was able to match the circle correctly after five consecutive trials, the task might switch to matching squares. After all the shapes had been mastered, the teacher might introduce matching a blue square to a red square, showing the child that shapes were still shapes, no matter what the color. After switching colors and mastering several shapes in a variety of colors, we might try having the child match a three-dimensional shape, like a square block, to the card with the square or a ball to the card with a circle. There would be many small steps mastered so that the child with autism could see the much bigger picture. All these kinds of things are learned by the typically developing child during his regular play. It doesn’t take hours of sitting with a teacher to learn simple concepts. This discrete trial method of teaching is how Tate learned almost everything. It took many hours and it was tedious. The end results were worth every minute we spent doing these discrete trials. 

In my constant search for ways to help Tate, I read of many therapies that did not have research to back them up. I read about diets, vitamins, use of steroids, holding therapy, animal-based therapies, music therapy, and several other things. I was willing to try almost anything to help Tate, but nothing had research results behind it except the ABA. I do believe some of the other things help some kids. Swimming with dolphins would be a dream for a lot of kids and it might even help a child with autism in some ways but it is not a valid therapy in my mind.  Music therapy would be very valuable to the child that likes music as well. I know it would not have gotten the results we got with ABA and discrete trial though.    

I have had a few people try to convince me to take Tate off milk and wheat. There are about a dozen foods Tate will eat. If I took him off milk and wheat then there would be almost nothing left for him to eat. I know Tate well enough to know he would probably go for days without eating before I gave in and let him have his crackers, bread and milk back. If I really thought the diet would “cure” Tate’s autism then I’d throw out every last cracker and piece of bread in the house. The kids that I know on the diets, still have autism, most of them are lower functioning than Tate. They feel better on the diets and Tate probably would too. If you feel better then you behave better and can learn better, I am sure.  I just do not think the benefits, if any, would outweigh the difficulty in our home. There are few studies I've seen and no real research to back up the diet therapies that I've seen.  

When Tate was waiting to be diagnosed by a professional, I sent out a letter to our relatives and some close friends. We didn’t want to make dozens of phone calls, answering all the same questions over and over. I explained what we were going through.  We had already decided we would be jumping into ABA therapy with both feet. I asked my friends and family to support us in our decision and not to buy into all the theories about “cures” they would hear about. There were no cures and only one research based therapy we were going to use. Immediately, I started hearing back from people with the suggestions I had specifically asked them not to give me. I heard: Tate needed to be going to a chiropractor, begin homeopathic treatments, use vitamins, take him off milk, and sign him up for horse-back riding lessons. Lots of people were just sure the government gave grants and all kinds of money to parents to help kids with autism too. 

I am very happy with the outcome of the early intervention program we provided for Tate. I am confident he benefitted a lot from the things we did. I don’t think I will ever look back and say I should have done anything differently. Had I hoped for a complete “recovery” from autism? Yes. Is it realistic to hope for such a thing? Probably not. Did God answer my prayers for Tate? Absolutely! 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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birth order and siblings have made a difference!

Birth order plays an important part in the development of any child.  Tate being number six of seven was a blessing, for sure.  Not having a routine, is hard for people on the autism spectrum.  Without us even knowing it, Tate probably began therapy the day he was born.  Had Tate been my first, second, or even third child, his daily activities would have been set, nearly, in stone.  When I was a young mother of three, I had the kids’ mealtimes, naps, baths, and bedtimes regulated by the clock and done the same way almost every day.  Toys were organized in bins and labeled boxes and kept picked up when not being played with.  Books were on shelves. There were hooks for jackets with each child’s name above them.  By the time I had five children, there was just organized chaos.  My routine was gone.  I still hoped most of the toys were picked up by the time Daddy got home in the evenings and jackets were somewhere off the floor.  I hardly ever got a hot meal on the table in the summer because many evenings were spent at a ball field, watching an older sibling play ball.  If Tate had been born earlier in our lives, he would have become much more handicapped.  I did not know Tate had autism when he was an infant and the routines I had for my first few children would have been so hard to break for Tate as he needed to outgrow them.  Seeing how hard it has been for Tate to be flexible about the few routines we have had in his ten years, has made me realize how glad I am he didn’t have more routine in his life earlier. 

Of course, the one thing that has always been constant in our lives, no matter what, is worship times on Sundays and Bible class times on Wednesday evenings.  The only exception is illness.

Some of Tate’s best teachers and therapists are his brothers and sisters.  Tate came home as an infant, to the perfect environment for him.  It was behavioral therapy from day one.  There was always an older sibling touching him, holding him, playing with him, talking to him, and causing him to adapt and be flexible.  There were unpredictable noises and movements, door slams and lots of talking.  Tate had to share.  There was not much that was his alone.  I am certain, that without all the siblings, Tate would be so much more handicapped than he is now.  

Sometimes, when I cannot teach Tate something, one of his siblings is able to teach him.  I was still feeding Tate his cereal when he was three because he had not mastered the use of a spoon.  His oldest brother determined he was going to show Tate how to use a spoon and he did it quickly with ice chips.  Tate loved ice chips but I had never thought of teaching with ice.  Tate was much more motivated to get the ice chips in his mouth than anything else I had tried. 

I tend to “baby” Tate because I think of him as a six year old in a ten year old body.  Tate’s siblings often expect more of him than I do and it is good for him.  When I do a cooking project with Tate, he helps me cook.  However when Tate’s nineteen year old brother cooks with Tate, he only supervises while Tate actually does the cooking.  The same brother takes time to show Tate how to do many tasks.  He is gone to college right now and he is looking forward to being home this summer to help with the education of Tate.

Before Tate was diagnosed with autism, we had initiated the adoption of Sydney.  Some people thought we should back out of our adoption while others encouraged us to continue.  I am so glad we did not listen to the negative people around us.  Where would Sydney be?  AND… Where would Tate be?  Sydney has taught him so much.  She is younger but much more outgoing.  She challenges him daily to do things he would not be doing without her prodding him on.  She is loud, demanding, and bossy.  She is a good teacher!     

Sydney-isms

Sydney often takes things I have said and twists them into different meanings.  There is a liquor store in our town off the main road and we pass it often.  (I cannot figure out how a town as small as ours can support two liquor stores and a bar.  It is very sad.)  When we drive past the liquor store, Sydney says, “That is where you go to throw up.”  The first time she said it, I was left scratching my head and then I remembered… Sydney asked me once what that store sold.  I told her it was a store that sold alcohol and alcohol makes people sick.  She put two and two together and came up with her own conclusion.  Can you picture people pulling in and asking for a bucket?  I wonder if that is what she pictures.  Ha!

When Sydney was a toddler, not able to communicate much yet, she was often confused about how to respond to people.  When she found herself in trouble or embarrassed, she would drop down on all fours and meow.  It usually got a giggle out of someone and it broke the ice for her.  It became a family joke and when any of us got into an awkward situation we would say “meow.”  We still do once in a while. 

Sydney has plastic cows and she plays with them as much as most girls her age play with Barbie dolls.  She loves them.  She slept with several of them last night.  She came into the kitchen with them in her hands this morning and announced in a disappointed voice, “They didn’t even have babies.  I looked all over my bed and there are no new babies.”  Then, she sat a couple calves next to the cow.  She turned to the bull and said, “You don’t have any ‘milkers’ so I can’t deal with you right now.”  Later, she asked me if the mama cow was fat enough to have babies.  I have no idea how am I supposed to assess the “condition” of a plastic cow?  I almost dropped to all fours and meowed, about that time.  Then Sydney said to the cow “eat more grass cow, so you can have a baby.”  She has a lot to learn.  Shawn thinks it would be really funny to buy her another calf and slip it into her bed tonight.  She’d probably just go with it, fully believing those cows had reproduced. 

Teaching Tate: wet or dry?

I think my least favorite part of being a mom was potty training. I probably should have taken my first two for counseling by the time I got them trained. I learned a lot though. A friend with several kids told me if I waited ‘til closer to age 3 then it would take 3 weeks to potty train verses months. The next three kids got to wait and it went so much smoother. When mom sets a timer and runs a toddler to the bathroom every hour whom is really trained? Is it mom or the toddler? 

Ironically, our adopted, Sydney, the one with no impulse control, was the easiest child I have ever trained. She caught on so quickly and loved staying dry. She had fewer accidents than the first six, by far. I doubt I had to change her sheets from a nighttime accident more than half a dozen times either.

Tate was definitely the hardest child for me to train. He just did not understand what I wanted. He was still wearing a drool bib when it should have been time to think about dragging out the potty chair. Our behavior consultant told me I would have to teach him the difference between wet and dry before I could make any headway. We started by holding his hand under water and talking to him about wet and dry. It didn’t take long until he understood what wet and dry were and he began to wipe his chin when it was wet. We lost the drool bib after a short time. Once he understood what wet verses dry was, he did better keeping his chin dry. Kids with autism often need to be systematically taught the simple lessons that typically developing kids learn on their own.

Once we were sure Tate could understand wet and dry, we began potty training. It was a very tough few months, and long after Tate was staying dry all day, he was still wetting the bed at night. Tate is my sixth child, so it was not the first time I had seen a wet bed but it did not just happen once in a while. It was every single morning. Changing sheets every morning for years gets old. Tate was too big for the largest kids diapers and trainers by the time he started school so he wore adult diapers to bed usually. The sheets were still wet every morning.

My wise husband was always insistent that we never try to teach a child with wet sheets by shaming them or using any negative reinforcement. He said “Do you really think a kid WANTS to wake up cold, wet and miserable? They cannot control it or they would!” Adding to a kid’s misery by letting them know how much they were inconveniencing their mother was not going to help.

Around age seven or eight, we talked to Tate’s pediatrician and put him on Desmopressin. It helps many kids but not Tate. We kept upping the dosage without great results and the medication was very expensive. Tate did wake up dry occasionally but almost never two nights in a row. I was beginning to think we would never make progress. Our behavior consultant often offered to help with ideas but I didn’t want Tate to feel pressured about the wet bed. I believed he had no control over it. After all, he had autism on top of inheriting the tendency to wet the bed. It was Shawn, the one who had taught me that a kid would not be wetting the bed deliberately who decided we needed to have a talk with Tate about his “problem.” I resisted. Tate didn’t have enough language to have much of “a talk” and he tried so hard to please us all the time. I worried he would not understand; but he would think we were upset with him and become anxious. Anxieties rule his life much of the time. 

I called the behavior consultant for advice. As always, she wanted data first. She is amazing and has taught me that data doesn’t lie. We took some data, including the bedtime and the time of waking. We know Tate wakes in the night and sometime lays awake for long periods of time, but now that he is older, I do not get up with him as I used to. Shawn’s idea was that we could teach Tate to get up and use the bathroom when he was awake in the night. It sounds simple. Don’t be fooled. Tate’s autism is hard to “fight” and routine means everything to him. He was used to wetting the bed at night. It was his routine.    

Normally, when trying to find the solution that works for a problem, we only change one variable at a time and continue to take data. This time we decided to change a lot of things at once and then remove one variable at a time to see what the effects were. Variable number one:  We had the big talk with Tate about trying to keep his bed dry at night. It went okay. So, we kept talking about it every evening before bed. Variable number two:  We took Tate off the medicine. It was so expensive and not really giving us the results it should have for the cost. Taking him off the medicine could have been counterproductive but we did it anyway. Variable number three:  We tried to monitor Tate’s intake of liquids in the evening. This was hard to police because he would get a drink in the upstairs bathroom if we stopped him in the kitchen. It has always been really hard for me to deny my kids a snack or drink (even in the night) if they say they are hungry or thirsty. Variable number four:  A chart Tate could use to keep track of dry nights. Tate loves charts and lists. They are pretty motivating in themselves. Variable number five:  Tate had to sleep in underwear instead of the adult-sized diapers he’d been wearing. Variable number six:  Gifts for dry mornings. There were HUGE gifts at first for even one dry night that were eventually sized down to smaller gifts for two nights in a row and then three nights, and then a week. Even the few bigger gifts ended up costing us less per month than the medicine had. 

We saw a little progress right away. We “played with” some of the variables and made some judgment calls almost immediately. The Depends were needed. Poor Tate didn’t get much sleep at all if he woke wet. He would not come downstairs and get us, no matter how many times we told him he should, so he would just lay awake miserable. He tried changing his own bed several times. He was sharing a room with a brother and it was interrupting both their nights. I only made a halfhearted attempt at controlling the liquid intake but Shawn was firmer about that one. We still watch it just a little. Talking with Tate, letting him chart his own progress, and the gift incentives seemed to make the biggest difference.  He is now out of the diapers and staying dry for weeks at a time, even without any incentives.

Tate, due to his autism, was stuck in the ROUTINE of bedwetting and he needed to be taught systematically NOT to wet the bed, as we had taught him everything else. I am so proud of Tate for learning these lessons that are so hard for him to learn! It was difficult to have a “talk” with Tate due to his limited language skills and his anxiety if we need to talk to him seriously about anything. (He always THINKS he is in trouble, yet very rarely is.) So, there you have it. Another milestone, late as usual, but I can mark that one off the list. Tate rarely wets the bed, at age 12. THAT was a long time coming.

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diagnosing Sydney

I told you how I came to discover Tate had autism in my last post. You can read about that here: http://quirks-and-chaos.blogspot.com/2012/04/encouragers-are-needed-be-one.html 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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