Doing Something Right

I have been told that I make a difference in my children. I discipline them differently, relate to them differently, and am simply unfair at times. To this I have one thing to say... Of course I treat my children differently. They are different people, with different attitudes, different personalities, and different ways of relating to the world. They have different interests, different emotions, and different abilities. With Baby, a simple stern look will bring her to tears. Bubba, however, is unable to read facial expressions correctly, so he laughs. Baby is not quite two and has a great understanding of actions and consequences. Bubba is three and has no concept of actions = consequences. My point...what works with one, doesn't always work with the other.

Evander and I have been doing something right though. On Friday, I went with Bubba and Baby to their school Valentine's parties and got to see them interact with their little friends, as well as one another. Both classes went to the playground, which they evidently do often together, and my children seemed to forget I was there. They were playing together like I had never seen before. Bubba was helping Baby up the steps, and she held his hand as they went down the slide together. She called for him when she wanted to be pushed in her little car, and he came running
It was so nice to see the two of them playing together. They love each other very much and are one another's best friend. While they may fight at home, they look out for each other when they are together. They depend on one another. We may run a tight ship, it seems to be working out pretty well.

Yet Another Opinion

When Bubba went for his 3-year well visit with our pediatrician, she recommended that we see a new psychiatrist. She began by explaining that this doctor is closer, and then got to the point. She wanted to see if this doctor might switch Bubba's medication. Our pediatrician felt that, since Bubba has improved so much, he might be able to switch to an ADD med instead of his current meds.
As I have mentioned in the past, Bubba is currently taking Seroquel, an anti-psychotic medication typically used for patients with schizophrenia or bipolar disorder. We do not like the thought of him being on the medication, but it has helped him to make great strides. Also, when we tried to completely remove him from the medication a few months ago, he completely came unglued. He lacked complete impulse control, began having potty accidents, stopped sleeping, and had aggressive outbursts. Because of this, we understand that he still needs something, but I was also curious if we could try something a little less intense.
Well...we (Bubba, Baby, and I) showed up at the psychiatrist's office in our typical tornado fashion. We whirled in through the tiny glass door and immediately took over the crowded, dorm room sized waiting area. I had my overly full teacher-like white 3-ring binder in hand, which carries all of Bubba's evaluations, observations, test scores, meeting times, and public school items (yes...I keep extra special records on all public school happenings), two Lambies (one baby and one lamb), two sippy cups, and one overstuffed purse. Contrary to the waiting patients' thoughts, I wasn't even the patient!
Bubba immediately began jumping off chairs, writing on the wall (doctor's offices really shouldn't chain a pen to anything because I can't remove it), and meowing like a cat. Next came the continuous spinning, bear crawls, yells, and echolalia (repetitive speech). To top it off, Baby body slammed herself on top of Bubba, who was, at the time, pretending to be a cat on the floor. Right about the time Bubba began counting the blind sections over and over, I noticed a teenager in the corner of the room gripping his chair so tightly I thought he was trying not to take off. Then, I heard his mother. She was trying to help him calm down...evidently this teenage boy was prone to panic attacks (the reason for his visit) and my children were giving him one!
After speaking with the doctor, we had all the answers we needed. He diagnosed him with Asperger's Syndrome (also known as high-functioning autism; on the high end of the autism spectrum; cannot be diagnosed until after 3 years of age), which we already knew was coming. Then, however, came the kicker. There was to be no change of medication. In fact, he increased Bubba's dose of Seroquel. He said that Bubba is, at his age, not capable of dealing with all of the emotion and anxiety that comes along with this syndrome. He said there is no way for anyone to understand the level of anxiety that Bubba feels in social situations and to take him off this medication would be devastating for him. He said that ADD medications simply cannot treat all that needs to be treated in this situation.
I left perfectly happy with the outcome. I want Bubba to be happy and healthy. I know that he carries a lot of anxiety around with him on a daily basis, and I would never want to make that worse just because I don't like the medication. The doctor seems to think that we will be able to change medications when Bubba is older and can better cope with his emotions, but right now, that isn't an option. We will see...

The Not-So-Good Nite Lite

A few months ago, I happened upon a tiny paragraph hidden in the corner of Parents magazine. It was a excerpt about a product called the "Good Nite Lite". It works through a timer, which is set by the parent. The parent sets the timer to the child's bedtime and a moon illuminates. When the appropriate wake up time is reached (which is also set by the parent), a sun appears. The key is to gradually increase the wake up time by 15 minutes, so your child learns to stay in bed. It also gave an example of a child who always awoke at 5:00 am but changed her ways after using the night light. Fabulous I thought! Who wakes up no later than 5:00 am every single morning? Yep...Bubba! What better candidate for the Good Nite Lite than us?
After our two night lights arrived (one for each child of course), I unpacked them and set the timers for 5:15 am. Here are the results:
Morning 1: 4:45 am wake up
Morning 2: 4:40 am wake up
Morning 3: 4:30 am wake up
Morning 4: 4:00 am wake up
As you can see, something was going terribly wrong. Bubba was supposed to be getting up later, not earlier. After thinking this through I asked Evander, "Do you think he is anxious about the sun appearing?" My thought was dismissed, but I decided to try one of my famous science experiments. Bubba had conveniently removed the sun/moon light from the plug, so I just left it unplugged. He asked about it and I said, "I don't have time to reset it tonight, so no sun in the morning."
The next morning, he slept until 5:00 am. I just knew that a visual cue, like a sun, would help him to see that it was time to get up (of stay in bed). I forgot, though, how sensitive he is. That one little change to his sleeping environment rocked his whole world. Now, we are back to the CARS night light that Momma Bird gave us and the closet light on. What a difference a light can make!

I cried...AGAIN

Each time Bubba or Baby begin something new, I am nervous. It is the kind of nervous you feel just before you step on the biggest roller coaster of all time... butterflies are fluttering in the pit of your stomach, adrenaline is beginning to rush, and a tiny part of you is just a little scared. This is not the same feeling I had today, however, when Bubba began PPCD.
Last night I tossed and turned. I kept waking up thinking of how Bubba might handle each new situation. By the time I got up this morning I was virtually in tears. For some reason, I was afraid for him. I was genuinely worried about him. Part of me was trying to talk myself out of taking him, but the other half was forcing me to go. I think my fear subconsciously started when I visited his classroom a few weeks earlier.
The room looked as if there had been a nuclear color and toy attack contained within the four classroom walls. My senses were overwhelmed with bright reds, blues, and yellows, and everywhere I looked I saw toys seeping out of every crevice. There were more pocket charts than I could count and more bulletin boards than I cared to look at. There was no restroom in the classroom and it was the most cluttered place I have ever seen. This was a far cry from his perfect little Daffodils room, so the anxiety slowly began.
Bubba likes order and routine. He doesn't tell authority figures he needs to use the restroom; he just goes. The color is too overstimulating for him, and he will be easily distracted. He isn't good with waiting his turn or eating snack quickly. He is Hispanic and might get confused with the ESL students. These were the thoughts racing through my head this morning, and, when I couldn't take it anymore, I sat down and wrote his teacher an email:

" Hi! As you know, Bubba will be joining you today, and I just wanted to share a few things about him (things you will most likely find out anyway).
1. He is completely potty trained but will be wearing a pull up today. It takes him weeks to actually ask to use the potty, and, until then, he would rather have an accident than ask.
2. In new situations, he has to be reminded to use his words. He can communicate very effectively but needs cuing.
3. He is the slowest eater on the planet.
4. He is very dramatic. He has a VERY high pain tolerance, but if he notices a reaction, he will milk it for all it's worth.
5. Lambie is his security blanket. He takes him everywhere. If he needs to be tucked away, I would suggest telling him you don't want the other kids to get him or have him place it inside his shirt (sounds weird but it works)
6. He is very into "modes of transportation" (cars, trucks, etc).
7. He is very easily distracted.
As you can tell, I'm a little nervous about today. The teacher side of me understands, but the mom side of me doesn't want him to go! I know you will take good care of him. If you need anything please email or call at xxx-xxx-xxxx. Also, Joy (name changed for privacy but named Joy because her radiant smile and buoyant laughter always bring me joy) teaches 3rd grade and is a good family friend (if you need anything)."
On the ride to school I began to tell Bubba how wonderfully fun his new school would be and how many new friends he would meet (not the smartest route to go but I was trying). Once we arrived I checked in the office to see where to go...the lunchroom. Surely these babies were not going to have to line up and wait for their teacher to come and get them (the teacher in me already knew the answer). I took Bubba to sit in the back of his class line and wait for his teacher to arrive. He immediately formed his little fists that were so familiar as an infant, a sure sign he was in distress. I tried to make friends with the little girl in front of him, but neither party was to interested so I gave up. Baby also tried making friends, but to no avail. Just when I began to freak out about the "big" kids being in the lunchroom with my 3-year-old, his teachers arrived.
I tried making eye contact, but they ignored me. I obviously stick out above rest of the crowd seated on the lunchroom floor, so that was a point deduction for them. They were not starting on a positive note with me this morning. When it looked as if I was going to have to make the first move, I stood, kissed Bubba on the forehead and told him goodbye. I stopped to let the teachers know that he was, indeed, part of their snake-like line (as if they didn't know) and turned to steal one last glimpse of him. Just as I did, he began to scream, and I panicked. I quickly began to calculate the distance from him to the door. Did I have the time and strength to jerk up Bubba and Baby and bolt out the door? Could I make it to the car, strap both children in, and screech out of the parking lot before someone caught me?
Instead, I took a deep breath, grabbed Baby's hand and walked as fast as my legs could carry me. I felt the tears welling up in my eyes, but I had to make it to the car. Baby gave some resistance, but there was no time. If I hesitated any longer I was going to break down in the front of the elementary school, so I scooped her up and ran to the car. When I was certain we were both safe inside, I let it go. What had I just done? I just left my child in a situation that even I did not feel comfortable in. I tried to convince myself that it was for his own good.
I spoke with Evander on the phone shortly after dropping him off, and he made me feel a little better (how he understood what I said through the sobs, I don't know). Then, my good friend Joy sent me two emails after checking in on him. She provided me detailed accounts of Bubba (Lambie tucked safely inside his shirt) interacting with the other children. She may never know how important those emails were for me, but I may not have made it through the 3 hours without them.
I picked him up 3 hours later, only to find that he was unharmed, clean, and in a relatively good mood. I know PPCD is good for him, but I also know that he is only 3. He is a 3-year-old in an elementary school. Through all that we have been through, I have never felt so awful in my life as I did today, walking away from him as he screamed for me.

PANDAS

When you read the word PANDAS, what comes to mind? If I had a guess I would say that you think of a giant black and white bear with big black eyes, hanging out in China, and eating bamboo. That is the image I assume most people would conjure. What do I think of when I hear the word PANDAS? Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus... a condition found in children who have contracted strep throat (or similar illnesses) or some children on the autism spectrum who have encountered children with strep throat.

Evander and I had never heard of PANDAS before visiting The Thoughtful House. So...when the doctor made a joke about his panda photo on the wall, we were clueless. Then he began to ask questions and explain. Do either one of you contract strep throat often? (Yes...I get it exactly twice a year, every single year) Have you been tested as a strep carrier? (No) Have you noticed when you begin feeling symptoms of strep Bubba's behavior changes? (No, but I would never put the two together) PANDAS means that when the body is fighting off a strep infection something goes terribly wrong, gets confused, and begins attacking parts of the brain as well. It is essentially an autoimmune attack on one's own brain. PANDAS can cause neurotypical children to exhibit signs of ADHD and/or autism when they contract strep throat, and it can cause children on the autism spectrum to temporarily regress. These children exhibit tics, hyperactivity, OCD, etc. It is rare, but always on my mind.

All day Friday, Bubba wasn't saying much or interacting with anyone. I blew it off because we were in the car all day. Friday night, when we arrived in Clanton, Baby was running a fever of 102.2. I gave her some Motrin and put her to bed, hoping she would be better in the morning. Saturday morning Baby awoke with a fever of 100.5 (much better and probably just a cold) and seemed to be playing well. Bubba, on the other hand, was a terror. He wasn't satisfied with anything. There was no toy, no juice, and no snack good enough for him. He was clingy, defiant, aggressive, and doing this weird new thing with his hands. I, again, assumed it was because we had been in the car for 12 hours the day before and he awoke in a new place. May Bee came over to watch them, so I could go to the hospital, and I warned her of Bubba's horrific mood and Baby's subtle fever.

Sunday went on much the same way until Baby awoke from her nap. She stumbled into the den, a sweaty mess, and began crying for me to hold her. When I picked her up, I immediately felt the fire radiating from her skin. I took her temp and found it was over 102. At that same moment, Bubba began screaming, and it hit me. I turned to my momma and said, "We need to get her to a doctor. She has strep." "You think?" my mom said. "Yes!" After 30 minutes of myself, my mother, and Evander (via computer at our house in Texas) searching for an after hours physician in Alabama, we finally found one in Hoover (an hour away).

We waited in the waiting room of the urgent care office for over two hours. During this time, Bubba was repeatedly jumping off the chairs and couches, moving furniture around, and running back and forth to the restroom. He was extremely hyper. Finally we were called back. I thought the nurse would never finish asking questions and checking vital signs before the doctor came in. Then he appeared. The doctor looked her over and lastly, looking in her mouth. "Tonsillitis" he proclaimed. "What about strep?" I said. "Oh, children under 2 typically don't get strep. It's very rare," he rattled. "She has had it before and I am worried she has it again." "Well, we will test her but I just don't think that is the case" he replied.

Ten minutes later, we exited the urgent care with a positive strep test, a prescription for an antibiotic, and a stunned physician. It took me almost three days to put all the signs together, but I did. I hate that strep affects Bubba in this way, but I am also glad that it does. He was my warning sign. He helped me to know that it was time to get her to a doctor. So, maybe now, when you see the word PANDAS, you will think of something other than a cuddly, fat, black and white bear.

Prayerful

(Warning: This one is a little heavy)

I was raised to be a good Southern Baptist girl. I went to Sunday School and "Big Church" every Sunday and participated in all the children's and youth events. I sang the hymns and bowed my head in prayer, but it wasn't until I became a Catholic that it all began to have a meaning and I began to have an excitement about my religion.

While completing Catholic conversion classes, I learned to pray the rosary, which became my prayer of choice. With this, I felt that I was really making a connection and I was part of something bigger. I began to recite the rosary on a daily basis, and I carried a rosary with me every where I went. When I had a good day, I would pray the rosary. When I had a bad day, I would pray the rosary. It was beautiful!

Then came Bubba's adoption. I was praying everyday, sometimes more, but I felt helpless. He wasn't able to come home, and I couldn't be with him. I spent all of my days checking Guatemalan message boards, my cell phone voicemail, and my email hoping for something...anything. Just when I thought I couldn't take any more, I found out I was pregnant, and that was it...the last straw. It broke me.

At 10 am on Wednesday at the end of July, I checked the message boards and my email for the last time. I pushed my chair away from the computer and collapsed to the floor, sobbing. Out of know where, I began to pray. I prayed a real prayer. It went something like this:

"God, I'm done. I'm done checking. I'm done asking when and I'm done caring. Right now I have the possibility of being a mom to two babies, but I'm not sure that I will actually ever be able to hold either one. I'm afraid of losing the baby inside and the baby in Guatemala, but I just can't worry anymore. It's all Yours! The fear, the nervousness, the worry, and the anxiety...it's Yours. If I'm not meant to have children then take them both. I will understand, but do not give me hope and then snatch it away. I just can't take anymore. Do what you want! It's in Your hands! I'm done trying!"

With that, I stood and wiped my eyes. I can see it as if it were yesterday. Fifteen minutes later I received a phone call that Bubba could come home. The next day I had an ultrasound that showed my baby's beating heart, and I have never prayed again. I have never said another rosary or recited the Lord's prayer in church. The only thing resembling a prayer is the bedtime prayer I say with my children each night. I'm sure most of you are asking why? Why wouldn't I pray when I have been so blessed? I suppose I have been afraid of tempting fate, but all of that has changed.

After spending a week at the hospital with my parents, I was picked up at the airport by my family. I immediately showered the kids with hugs and kisses and jumped in the car. "We missed you Mommy" they said, just as they had rehearsed with Evander moments before (I'm sure), but it was still nice to hear. I then began telling Evander about my trip and how everyone was, when Bubba interrupted me.

"I miss you Mommy!" he said. "Thanks" I replied and continued talking.

"Grandaddy sick, Mommy ?" he asked. "Yes baby! Grandaddy is sick but he is getting better." I uttered and picked up my conversation.

"I prayed for you!" he said and I froze. I looked at Evander and then back at Bubba.

"Did he just say what I think he said?" I asked Evander. "I think so" chuckled Evander.

I reached back and grabbed Bubba's leg. "Thank you" I murmured and quickly turned so that he couldn't see the tears welling up in my bloodshot eyes.

Tonight I found a pocket-size prayer book that Evander's grandmother had given me during Bubba's adoption. In it, she had marked her favorite prayer, Guardian Angel Prayer. Tonight I prayed this prayer with my children.

Angel of God,

my Guardian dear,

to whom God's love

commits me here.

Ever this day

be at my side;

to light, to guard,

to rule and guide. Amen.

Bed side manner

The room is like a shotgun hallway that has been blocked by deep tan colored walls on each end. The smell of burned coffee is overwhelming and the concern of germs is exhausting. The sound of nervous laughter fills the room as strangers try to forget their troubles and find some sort of awkward comfort in one another. The knowledge that we share the same worry for a loved one forges a bond between us.As I sit in the ICU waiting room, I am trying desperately not to focus on the paint that has been chipped from the wall or the desire to seek out a Clotox wipe to scrub a dingy spot off the floor. Then, a member of the Pink family speaks to me. "We are running down to get something to eat but we will be right back." With that I am instantly brought back to the real world.There is an unwritten rule that you must checkin with the other waiting families. Each one knows where the other has gone just in case a doctor stops in or the phone rings. The waiting room is our base camp, where we may always be found. I have eaten meals with these families, answered calls for these families, and slept with these families. I have even comforted these families after receiving devastating news. We check on one anothers progress, as if their family member is one of our own.While I'm not sure how many days I've been here (because the days are starting to run together) I have been amazed by this experience. Only days before these people were strangers but now they are friends. Despite ethnicity, social standing, or regious beliefs this community of ICU family members has formed a support system for one another. The way people come together during hardship will always fascinate me. Why can't it always be that way?