Just Another Day in Paradise

People often tell me I should write down the things these kids say.  I do.  I keep a folder on my desktop and try to write down word-for-word the funnier things they say.  I often use them for Facebook statuses often.  So. Following is a sort of scrapbook of random things I've saved.  There is no real theme involved in this post which sort of makes it a lot like the world I live in here.  Ha!

I have a lot of “Who’s on first” conversations with my two youngest every day of the week…

One day this past spring, Sydney came running into the house and said, “There are only two kittens in the chicken house!”  I said, “One of the mamas must’ve moved some.  We’ll find them this afternoon.”  A few minutes later she came running back in and said, “I found all the kittens.”   Me: “Where were they?”  Sydney: “They are in the chicken house.”  Me: “Great, but where did you find them?”  Sydney: “In the chicken house.”  Me: “So they were never lost?”  Sydney: “Yeah, they were lost but I found them and put them in the chicken house.”  Me: “So, where did you find them?”  Sydney: “They are not lost. They are in the chicken house.”  Me: “Where were they when they were NOT in the chicken house.”  Sydney: “lost.”  UGH!!!!!  I gave up.

Me, noticing Tate’s voice sounded a little rough:  “Tate, do you have a sore throat?”  Tate: “Don’t worry.  Sore throats only last one day.”  Me: “So, your throat is sore?”  Tate: “My teacher got a germ from another student.”  Me, turning Tate’s face to look at me:  “Tate. Is. Your. Throat. Sore?”  Tate: “Don’t worry, it will be better on Friday.” I think I can assume his throat is sore and administer Tylenol, maybe. ??

Here are some of my recent favorite Sydney-isms:

Sydney, while eating a waffle said, "Mom, would you put my hair in a ponytail 'cause it is gonna get all sticky with this syrup and then you will get all dramatic and ask me how I got my hair all sticky and say 'did you chew on this hair and get it sticky or did you drag it through your food and get it sticky' and then I'll have to tell you that I got it in my syrup and you will be saying 'we should have put it up in a ponytail' so would you just put it up in a ponytail?"

Sydney came running in the door. She was wearing shorts and cowboy boots.  I asked her why she had on the boots and she said she was going out to the barn and there might be snakes. She's never worried about snakes before. Her big phobia is bees. She said, "Mom, COULD there be snakes out there?" I said that there could but they are afraid of people and don't usually hurt anyone. She said, "Well, I could poison 'em. Just whip me up something poisonous please."

Sydney makes up words all the time.  A few evenings ago the locusts were very loud in the trees.  She asked me why those crickets were “cricking.”  A couple of days later, she was bent over for quite a while and said she was getting “a cricket in the back.” 

I don’t like to mislead the kids but I try to avoid certain stressful topics or things that I know will upset them, especially right before school.  Sometimes I have to come clean though….

Sydney (on our way to school):  Mom, what are YOU going to do today?  Me: Oh, all kinds of things.  Sydney: Like what?  Me (trying to change the subject): I love this song on the radio.  Sydney: Me too.  What are you going to do today?  Me: Well, I have to help Grandpa with something today.  Sydney: What does he need help with?  Me (scrambling for a way to avoid the truth): Well, the other day I helped him make coleslaw.  Sydney: coleslaw?  Me: Yeah, he got a new grinder and we used it to make coleslaw.  Sydney: What are you going to help him with today?  Me (buying more time): Whatever he needs help with.  Sydney: Are you going to make more coleslaw?  Me: No.  He won’t need any more of that yet.  Sydney: What will he need help with today?  Me (cringing ‘cause we aren’t near the school yet and I’m out of everything except “NONE OF YOUR BUSINESS!”): I’m going to help Grandpa with his cows.  Sydney: WHAT? What are you doing to do?  Me (wishing I thought it was okay to lie): I’m going to the sale barn with Grandpa.  Okay?!  Sydney: You are going to the sale barn with Grandpa?  Me (defensively): Yeah.  Grandma doesn’t like for Grandpa to go alone.  Sydney: So, why am I going to school?!  Me: You cannot skip school every time Grandpa goes to the sale barn.  Sydney: Why not??  Me: Because you have things to learn and your teachers need you at school.  Sydney (glaring):  You have to tell me about every cow.  Me (feeling like a traitor): I will take lots of pictures.  *Fast forward 8 hours to pick up.  Sydney gets into the van and holds her hand out for my phone.  Yes, I was probably the only one to ever sit at a cattle sale taking pictures of the cows being paraded across the auction block.  Anything for my baby girl.   

The amount of love that Sydney has for animals is probably equivalent to the amount of disdain that Tate has for them.  Animals are unpredictable and they might slobber on you, scratch you, jump on you, rub against you, or make sudden moves.  Therefore, animals cannot be trusted.  We have a big black tom cat named Fraidy that lives outside.  Fraidy is friendly, calm, and has a great disposition.  Fraidy prefers Tate to anyone else.  Poor Fraidy.  Poor Tate.  Tate likes to sit on the deck and almost every time, Fraidy finds him.  Tate talks to the cat as if cats can totally understand the English language.  It goes something like this, “Hey cat. Don’t come over here.  Get away from me.  No. Hey!  I don’t like it when you touch me.  MOM!!!  There is a black cat out here that keeps bothering me.”  I remind Tate that the cat’s name is Fraidy; he’s lived here for a long time; he is friendly; he only wants petted…   Tate usually ends the conversation by telling me I should “call animal control” and ask them to come and get “this cat.”  Once this summer my oldest daughter Regan and Tate were outside together.  Fraidy approached Tate and Tate spoke to Fraidy and said, “Hey cat. Regan wants you.”  He totally thought that would do the trick and divert the cat’s attention from him to her.  It did not of course, and Regan was able to convince Tate to actually touch the cat with a couple of fingers that time.  I think Fraidy may actually be a pretty good autism therapist! 

This past weekend we were heading out to roast hotdogs over a bonfire when Sydney became interested in what our hotdogs were made from.  Shawn read the label and told her they were made of beef and pork.  Sydney started naming animals we can eat.  (This is somewhat of a touchy subject because we are not sure she understands that we eat cows.  She is CRAZY passionate about cows.)  She rambled on:  “We eat chickens, turkeys, pigs, deer, antelopes, Indians, horses...”  Shawn, half-listening was agreeing with her but was just a couple of beats behind.  He perked up and said, “Now wait a minute.  Indians are people.  We don’t eat people.  I don’t eat horses either.”  I was listening from the other room and was so glad it was Shawn’s turn to try and keep a straight face in the presence of Sydney.

Tate often gives advice:

This summer Levi got his learners permit and took drivers’ ed.  I was talking to Levi about his drivers’ education class.  Tate interrupted, “Levi, I don’t even know why you need to go to school to learn to drive.  Driving is easy. Once Dad let me drive on the driveway and I didn’t even have a license.  You just put two hands on the wheel; Put your foot near the brake; and look at the road. If you follow those three steps and keep your arms and legs in the car, then you are driving.”

Tate gave Levi another tip about driving later:

“Levi, you drive cars all the time on Mario Cart.  You don’t need to go to a school to learn how to drive.  You just do the same thing to drive our car you do on Mario Cart.  It’s really not hard.  Just don’t run off the road.” 

I woke at four this morning with a headache.  I tip-toed into the living room to get some medicine.  Why tip-toe?  Because Sydney’s hyper-vigilance is especially keen in the early mornings.  She caught me.  I heard her holler, “Mom, Can I have some cantaloupe?”  I told her it was still night and she actually went back to sleep.  Whew!  At 6:00 she was up for real.  As always, her volume was turned all the way up and she was wound up tight.  Just like most mornings, she asked dozens of questions without waiting for any answers and touched on many topics that are totally unrelated.  I just cannot believe how fast her brain is whirring in the early mornings before medication.  I tried to jot down some key words this morning so I could remember how it went and give an accurate picture of our morning but she talks FAST and I missed a lot of it.  It went something like:  Mom, can I have juice? Why were you up in the night?  Did it storm?  I heard it raining.  Where’s Dad?  Why is it still dark?  Can I wear my cowboy boots today?  I can put tennis shoes in my backpack for PE.  Is it PE day?  Yesterday, at church Miss Robin saw a bug and she said, ‘Bug! Bug! Bug!’ cause she was afraid of it.  I asked if I could sit BETWEEN Robin and Steve and they let me.  Miss Robin said, ‘Between?’ and I said ‘Yes, between' and then she let me!  There is a gnat in here.  Will you make me a cow puppet? Is it cold or hot today? What is Pepper barking at?  Is Daisy dog here?  Are Kassie and Ian coming today?  Where is Dad?  I hope Grandpa feels better today.  Can I take vegetables in my lunch today? Do you know where my ipod is?  My favorite song is 'Sunny and Seventy-five' (then she began singing it... SUNNNNNNYYYYY AND SEV-EN-TY FI-I-I-IVE.... 

Just another day in Paradise!!

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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