Best Christmas

What was your best Christmas? This past Christmas week, my mother posed this question to me, a question for which I had no answer. My mind was instantly flooded with the gifts I received: my Samantha doll, a new computer, a big girl bike, the perfect stereo, but no one Christmas stuck out in my mind. My answer to her was that every Christmas was great. I was always very excited on Christmas morning and was never disappointed. Now, though, I can appropriately answer the question.

On Christmas Eve Evander, Momma, Daddy and I stayed up pretending to be Ho Ho. We acted as Santa's workshop in overdrive, constructing a gigantic playhouse, piecing together a doll bed and stroller, and stuffing stockings to the rim. We gathered and piled presents and set everything out just so. I placed some gingerbread cookies on a plate and took them off again, so the crumbs would seem real. I also poured a glass of soy milk and poured it down the drain, just for that special effect of milk scum at the bottom of the little green cup. When we decided that everything was perfect, we went to bed (Evander slept on the couch with Bubba and I slept on Baby's floor to make sure they didn't wander in the night).

At 4:45 I awoke, thinking it must be time for them to start getting up, but no one was stirring. My anticipation may have been higher than the children's but I was dying. I couldn't wait to see their faces and finally, an hour later, Bubba began to awaken. Evander quarantined Bubba in our bedroom while I ran to wake up my parents and Baby. When everyone was ready, we all walked into the Christmas tree room (where Ho Ho left all the gifts). The looks on their faces was more than I could have imagined. There was a twinkle in their eyes, a little sign that said, "I believe". They were both so overwhelmed they didn't know what to do first. Bubba's eyes immediately found the tractor that scoops up cars, and he would have been done after that if it weren't for Evander urging him to look through his stocking. Baby was in complete shock. Before her stood a pile of gifts and the baby doll she had wanted. She also saw Elmo and Abby peeking out from inside her stocking.

To see their reaction as they tore the paper off the playhouse was priceless, but so was the entire day. To see the twinkle in their eyes was a gift, the best gift I could ever receive. The magic of Christmas is alive in their hearts and they truly believe that Ho Ho brought those gifts for them. They could not be happier, and I am thankful that we could provide that for them. I am also thankful that my parents could experience this special Christmas with us. The was my best Christmas ever.

Breaking News

There are many things in life that we all take for granted; things we assume everyone has. For instance, everyone is, of course, thankful to hear but rarely, if ever, think of it until he/she loses the ability. The same principle applies to laughter and friendship. I can honestly say that I have never said, "Wow, I'm really glad that I can laugh." But now I do. Now I thank God for many things that I have. Why? Because, up until recently, my son was not blessed with theses gifts.
Yesterday afternoon, I wheeled into the carpool lane at Bubba and Baby's school, hopped out and ran in their teachers' holiday gifts. Tucked neatly under my arm was an oversized orange envelope which contained a special frog birthday invitation to Bubba's pool party. He had mentioned a little boy in his class a few times, so I hoped to invite this "friend" to his party. I poked my head into Bubba's classroom and found his teacher busily stuffing backpacks, and I asked, "Does Bubba have any friends at school? You know someone who might try to play with him?" The answer I was expecting was "Yes there is a little boy who tries to play with him or helps him put his shoes on" but that is not what I got.
"Well...he has a lot of friends."
"He does?"
"Yes, he has been playing with everyone very nicely."
"Wait a minute. Do you mean playing WITH or playing NEAR? Do you mean playing the same thing or actively playing the same thing together, with another child?"
"Oh, he plays with, but he does have one real friend."
"A friend? A real friend? One that he plays with everyday and talks to and shares toys with? One friend?" Tears began to fill my eyes.
"Yes, his name is Juan (not his real name of course)"
"Oh my gosh! Well...please put this invitation in Juan's backpack for me."
I tried to compose myself before I left the room. Just as I turned the corner, Bubba ran at me with arms open wide. Then came Baby with lop-sided pig tails. On the way home we talked about their day...snack, lunch, going potty, and playing. Once inside the house I put on Wall-E, poured a snack and water and sat down next to them on the couch. I was still trying to get over my excitement about Bubba's friends when Belle began sliding off the couch. First her butt went and her head slowly followed. She was trying desperately to hang on, digging her nails into the fabric of the couch, but it was no use. She splattered onto the floor, as if she had fallen 100 feet.
Bubba immediately began laughing. Then he laughed harder and harder. He fell back onto the couch and curled into the fetal position as he roared with laughter. "Mommy, Belle slid off the couch!" he squealed and continued to laugh.
I sat there, staring, as if I had just witnessed a man landing on the moon. As the Little Einsteins would say, "I CANNOT believe it!" Bubba was laughing! He was actually laughing a real laugh and I was there to witness it. Sure...he has laughed before, when someone else laughs or he senses that he is supposed to laugh, but he has never just laughed. This was honest and sincere. It was a direct reaction to something only he found humorous. Baby and I were not laughing, but I sinced that Baby recognized the importance of this moment. She, like me, was staring at him with eyes wide open in amazement.
Many parents have the joy of seeing their baby's smile for the first time or coo when they are spoken to, but we did not have that with Bubba. He is only now beginning to show emotion and these small glimpses are beautiful. I cannot say that I have seen or heard anything more heartwarming than his smile and laughter in that moment. Be grateful for what you have, because everyone may not be so lucky.

Calmness in Conversation

There have been many occasions over the past 2 1/2 years that Bubba and I have stared down one another in complete and absolute frustration because of the communication barrier that autism slapped down between us. There might as well have been an actual brick wall between us with him gesturing and screaming on one side, while I am searching for a crack in the mortar just to get a glimpse of any potential non-verbal communication that might aide me in figuring out why he was screaming at the top of his lungs on the other side.That wall is crumbling.

Just as citizens stepping through the border crossing of Berlin signaled the fall of the Berlin Wall, Bubba's break-through sentences meant our wall was coming down...brick by brick. This week he has really begun to have mini-conversations with us. He has started to ask, "What you doing?" or "Where are you going?" I have begun to include him on conversations about our dinner menu or what he might like to do in the afternoon. He is just now able to understand these concepts and he is beginning to reason. He now tells Baby "I'm sorry" or "It's ok, Baby" He told Baby today that it was too cold to go outside and play. When she asked again he told her she needed a jacket to go outside because it was chilly. Amazing!

It has been interesting to see that as his speech grows, his anger and aggression dissipates. The more he can communicate the happier he is. There is a calmness in his conversations that I have never seen, but this makes him even more frustrated when he cannot get out what he is thinking. He has begun to studder a bit, but I think it is because his mind is going faster than his mouth. We have always said that Bubba was extremely smart, but we had no idea how smart until he was able to communicate. Now, we are amazed at the comments he makes or the observations he notes. It has been a long and arduous task for him, but the wall toppling. He is about to break right through it!

Anxiously Awaiting

Bubba making sure his stocking is just right.

Christmas has always been my favorite holiday, and I suppose it is because of my mother's love for Christmas. Each year our house would be decorated beyond belief with lights, trees (big and small), Santas (big and small), snowmen, garland, and candles. Our special stockings were always hung with care on the mantle to await Ho Ho's arrival. We would begin playing Christmas music just after Thanksgiving and carol singing filled our house. My mother would make cookies and candies with us (myself, my niece, and my nephew) and never minded that we licked our fingers before scooping the pecans out or took a little taste and then dipped it in chocolate. I learned to desire and appreciate the family and joy of the holiday more than the gifts I may receive.
So it is no wonder that I have carried on the traditions with my children. This is the first year that we will be staying in Texas for Christmas, and I couldn't be happier. I pulled out every decoration that I own. We had our house trimmed in lights and purchased a real tree. Bubba and Baby even have little trees in their rooms (both Wal-Mart musthaves before Thanksgiving). Bubba has a lovely purple tinsel tree decorated with CARS ornaments, while Baby has an elegant bright pink tree dawned with Princess ornaments. A silver snowman family is holding on to our stockings while trying not to get pushed from the mantle by the garland lurking behind them (or pulled off by the children in front). My precious moments snow village collection is carefully displayed atop the kitchen cabinets, totally out of reach of little fingers.

Baby kissing a sheep from the Nativity scene.

Both kids are so excited. They love looking at all the lights and enjoy the house being decorated. They also like decorating the tree undecorating and redecorating (a daily occurrence). I purchased GFCF gingerbread mix and non-rice krispies for Rice krispies treats. I even found a way to make my mom's famous bon-bon balls and still be GFCF.

We went to see HoHo but only Bubba would even approach. I was amazed at how nicely he sat NEXT to Santa (but would not let Santa touch him), but quickly found out the reason. As I motioned for him to get up he burst into tears. I was puzzled! Usually that happens BEFORE Santa, not after. "What's wrong?" He sobbed, "My tractor that scoops up cars..." Then it hit me, and I began to tear up. I felt horrible!

I have mentioned many times just how literal Bubba is but it always continues to hit me in the face over and over again. Since before Thanksgiving he has asked for only one thing, a tractor that scoops up cars (more specifically the Screaming Banshee tractor from the Cars movie, but that's not what he says). Evander and I have reassured him that, if he is a nice boy, Santa will bring him the "tractor that scoops up cars". Well...he took that for what it meant to him. He thought that if he was nice to Santa, he would give him his tractor. When that didn't happen, he was stunned! He thought he must have done something wrong. After calming him down, we tried to explain in different terms, Bubba terms, how the holiday would go down. Now he just asks about the tractor every day.

Christmas is special for many reasons to me. This year I will get to experience Christmas in my home through my children's eyes. I keep trying to imagine their excitement on Christmas morning and a smile comes to my face. I would like to carry on my mother's traditions (with her help) and maybe add a new one (going to Christmas Eve mass). I want to make this holiday as special for my children as it is for me.

Bubba's tree and Baby's tree

Week In Review

It's been one of those weeks. So bad, in fact, that when my niece walked in our house yesterday she paused for a moment to look around. We hit the ground running after Thanksgiving and had no time for silly things like house cleaning.

Monday: Bubba had an ENT appointment to see if his latest sinus infection had cleared. I was so proud of us because it was relatively uneventful. Both kids used the potty before entering and waited patiently to see the doctor. Once in, the doctor told us Bubba needed sinus surgery sooner than expected. We scheduled our surgery for January 20 and received papers for pre-surgery blood work (with an appointment scheduled for Tuesday at 9:15).

Tuesday: At 2:00 am Baby stumbles into our room with a 102 degree fever and smelling as if she had just emerged from a restaurant's garbage dump. We changed her, gave her some Motrin, and put her back to bed. She has had an upset stomach since Friday afternoon (the day after Thanksgiving, so no worries). At 8:00 am I began to get Bubba ready for his 9:15 lab appointment and decided I would just scoop Baby out of bed in time to make it to the appointment. At 8:30 Baby shuffles down the hallway with a 102.4 degree fever after dumpster diving for a second time. I immediately kick it into high gear! Baby doesn't run even the slightest fever unless something is wrong, so I squirt some Tylenol into her mouth as I dial the pediatrician's number to speak with the nurse.
I have learned that it is never a good sign when the nurse says, "Yeah...I think something more is going on. Let's get her in first thing." GREAT!! Now I have to find the Children's Hospital Lab phone number to cancel our appointment because we are double booked for 9:15. After moving the appointment to Thursday at the same time, I throw some clothes on Baby and we head for the doctor. I have failed to mention until now that Baby is not experiencing run-of-the-mill diarrhea (if there is such a thing). It looks like she pooped green snot with blood. Not good!
After checking in at the pediatrician's office, my cell phone rings. I am fully expecting it to be Evander on the phone so I answer in a "Why the hell are you calling me right now because you know I'm at the pediatrician's office with two kids" kind of tone, and I hear "Mrs. Gregory?" on the other end. Not Evander...it instantly clicked. I had a phone conference with Bubba's DAN! doctor at 9:15 today. Whoops! I quickly explain that I have a very sick child and will have to call at a more convenient time, and just then our name is called.
Once in the back, I began to calm down a little. I was finally able to take a deep breath, and I felt something wet on my leg and hear a splat on the ground. I looked at the floor to find bloody poop drops covering the floor and my jeans. I ran to get the nurse and then cleaned baby up. So...here we sit with poopy jeans, a poopy diaper (that the doctor needed to see), a really high fever, and Bubba licking the mirror, when the doctor comes in. A poop sample is required to determine what the cause of Baby's sickness is but I am told it is most likely E Coli, Salmonella, or Shigella that was contracted while traveling. There is, of course, not enough poo in the diaper for proper collection so I bring back a nice little sample at 2:30 and continue poo cleanup and fever control for the remainder of the day.


Wednesday: Baby's fever has broken, but she still isn't feeling well. I have a hair appointment, so I would love for both children to go to school, but it isn't the right thing to do. I did, however, call Evander to ask his opinion so I wouldn't have the option of leaving Baby at school if the thought occured again. Baby and I drop Bubba at school and head for my hair cut.
We had a relatively uneventful day (if you don't mention the constant pooping) and picked Bubba up at school. Around 5:00 I began making dinner and Bubba required my attention in the bathroom. When we emerged from the potty, I realized that my shadow (Baby) wasn't with me. Then I heard, "NO baby!" coming from the master bath. I ran in to find Bubba holding an open bottle of cough medicine and a heavy fruity smell coming from Baby's mouth. "Did you drink this?" I asked. "Yeah!" Baby replied. I, then, took the bottle from Bubba and noticed that it was nearly empty.
The poison control went as follows:
"Hi...my 20 month old just downed 1/2 a bottle of cough medicine while I was wiping my 3-year-old's butt. What do I need to do?"
"What did she drink?"
"Delsym"
"And how much?"
"I have no idea. I know the bottle was about half full and now it is virtually empty."
After we performed an estimate calculation of the amount she drank and determined that Delsym is a children's cough medicine that has dextromethorphan, which is harmful in large doses, she said, "You need to go straight to the emergency room for observation. I will call ahead to let them know you are coming."
FABULOUS! I was expecting a watch and wait sort of answer, not a go to the ER answer, and I couldn't go immediately because I had dinner on the stove and two half-naked children running around with a dog that just peed in the floor. I quickly clothed them and plopped some dinner in Tupperware containers and called Evander as I was walking out the door. As we wheeled into the ER, a nurse was at the door waiting and rushed us back. She asked me all the usual questions, and I disclosed our potential bacterial infection/explosive diarrhea.
After seeing the physician's assistant, we were told that she needed to be under observation for 4 hours. Evander came and took Bubba home, which left Baby and I to roam the ER for hours on end. We walked up and down the hallways, pulled out untouchable drawers, intruded on patients' privacys, and changed 5 diarrhea diapers. We saw a man come in and die, a stabbing victim, and several elderly people, and Baby waved to them all. I was at my wit's end, but she never shed a tear. Just when I couldn't take any more, the nurse came in to take Baby's vitals said she was looking for the PA so we could leave. YEAH! It was a good thing because Baby was now down to wearing one of Bubba's pull-ups. One more explosion and someone was going to search out some diapers.
Two minutes later, car accident victims came in, and I could tell we weren't leaving. We ended up staying in the ER for around 5 hours. We met the dead man's family and the mortician who came to pick him up, the friends of the stabbing victim (and I'm not sure that one of them didn't do the stabbing), and several police and fire men. Baby went home, had a snack, and went to bed.

Thursday: Evander and I dragged ourselves out of bed to get ready for the day. Bubba's lab work was today, but I knew it wouldn't take long. I was lost in thoughts of slipping back into my pjs when stinky Baby shuffled through the door to our room. I changed everyone into their comfiest outfits and headed to the Children's Hospital. We arrived at 9:10, ran into the restroom and headed for the lab. I didn't bring juice or snacks because I was certain that we would be out of there by 9:45 at the latest. After the past few days, I should have known better.
At 9:45 we are finally called back for the lab work.
The plebotemist says, "You know he is getting a chloride sweat test today?"
"Yes...and blood work!" I replied.
"Do you have any questions before we begin?"
"The ENT didn't really tell me much, other than it only took a few minutes so I don't really know what I could ask."
"OH! Let me get you an info sheet."
After reading the info sheet, I was in shock for a number of reasons.
1. A sweat test is used to diagnosis cystic fibrosis.
2. The test takes up to 45 minutes.
3. The test is performed on BOTH arms.
4. It involves an electric current.
AAAHHH!!! I was unaware that we were being tested for cystic fibrosis. I thought this test was just something that needed to be done before surgery. My shock was also not because I think he could actually have it, but just the fact that he was being tested for it. I think someone should have given me a heads up. My next problem was that I brought NOTHING for them, trusting that it would literally take a few minutes...not hours! Last but not least is the current. Most children probably would not have a problem with a tingly arm but arms and hands are Bubba's most sensitive areas and he freaks when anything unusual is touching them.
After screaming the entire way through the test, another plebotemist brings Bubba a toy truck and Baby a beanie kangaroo. Then they brought juice and crackers. They were trying their best to get him to stop but it was no use. Once the sweat test was over, the blood work began. I had to physically restrain Bubba while they took his blood. He was kicking and screaming "Don't hurt me!"
Finally, at 11:08 we walked out of Children's Hospital, battered, bruised, hungry, and tired. The three of us looked like zombies emerging from our tombs. Bubba's arms were red, dried tears stuck to his face, and his clothes all awry. Baby had crackers around her mouth, juice stains on her shirt, and a bow that was slipping down the side of her face. I can't imagine that I looked any better because I had just restrained Bubba for an hour and took care of Baby with one hand.

I hope this week is much better than last week. We should receive results back from everyone's tests, and maybe we can get a little sleep. Christmas keeps whispering in my ear, but I'm not listening. I want to take a nap!

Science Experiment

We got the diagnosis. We read the books. We began therapies. We searched out the best DAN! doctor. We started the diet. We forced the supplements down. Why? Why did we do this? Fifteen years from now, we want to be able to tell Bubba that we did everything we could to help him. We don't want to say, "I wish we tried those B12 shots." We had hope that he might speak more or say I love you. We had hope that he might pat his sister instead of punch her or laugh at something funny. We had hope that he would recover. We had hope. Now, 6 months later, we stand here with renewed hope.

I have posed the question before about Bubba's future, with the diet, supplements, and therapies. This time, I posed it to Evander. "What do you think would happen if we stopped ALL the supplements," I questioned. He immediately became defensive, "Why would we want to do that?" See, a few days before our big Colorado Thanksgiving trip, we had forgotten a dose of B12 and saw no change in Bubba. This got me really thinking...he is doing so well now. Has his body and mind caught up? Was it just a moment in time that his body required extra nourishment or does he need it to thrive? I would absolutely not take him off the diet, because we have seen too many adverse effects from non-GFCF food, but making him take all of these supplements (+15 a day) is becoming too much for him.

After MUCH discussion, we decided to try our own little science experiment. We took nothing but Seroquel (antipsychotic), Melatonin (for sleep, a must have), and Juice Plus gummies (a whole food supplement). We carefully watched him for any regression, change in behavior, or lack of speech. What did we see? Nothing! No change! He was his usual self, if not calmer. The doctor had said that the B12 and glutathione cream could make him hyper, but we saw not change in him when we began those supplements. Now that he is off of them, however, I see a big change.

It has been almost 2 weeks since we stopped all supplements, and he is doing really well. He is talking even more (Last night I had to ask him to be quiet. I hated to do it but we were in the ER with Baby because she drank 1/2 a bottle of cough medicine. That's another story). He is also being very sweet to Baby, which I love to see. Now, they are sharing and playing together very nicely. They seem more like brother and sister than they ever have. I hope this continues. I hope he doesn't need supplements anymore. I hope he can eventually have a regular diet. I hope he can join a mainstream kindergarten. I hope he fully recovers.

Those Children

Many times I have posted that I am "that parent". I am the parent who can't let go, the one who won't stop asking questions, and the one who cries when the children are left. I am the parent who teachers will talk about for years to come, not in a bad way, but in an overprotective-unable to cut the cord sort of way, and I am ok with that. What I realized today, however, is that I have "those children".

This morning, Evander and I went to see Bubba and Baby's holiday performance at school. Baby usually doesn't attend school on Fridays, but her teacher came to get her out of the car this morning and said, "I thought we should get her now so she will have time to calm down before we perform. Oh...would you mind possibly standing up on stage if we need you?" I should have known at that point what was in store, but I just agreed, and she took Baby, kicking and screaming, from the car. (She really loves school, but she doesn't like leaving me, which I must admit is kind of nice but I am starting to feel bad for her.) As Evander and I waited for the children to come out we discussed how we would handle the entrance.
"We have to keep our heads down," I explained. "If they see us, it is OVER!"
"I know," Evander said. "Oh here they come, and they look so cute."

"Don't look!" I insisted. "Hurry, look away! Don't make eye contact!"

At that moment, Baby rounded the corner and looked as if her world had fallen all around her. Her eyes were puffy, a fallen tear rested on her cheek, and dried snot shown on her long black sleeves. She wore a big orange pumpkin with a stem hat cocked to the side, careful not to mess up her bow. As her class mounted the stage, I heard "Stand up. Stand up, Baby!" She was refusing to stand, and she was refusing to participate. So...there she sat, a rotten pumpkin in a field of happy dancing faces. As they left the stage, we made contact and it was just like slow motion. I tried to look away but I saw it register in her face. Immediately she started her dramatic hyperventilating cry and the entire audience turned to see what had happened. They had found the rotten pumpkin's owners, and everyone began to laugh.

Baby sat with us as Bubba emerged from his classroom and headed for the stage. He was anxiously searching the crowd for a familiar face, and we were trying to get him to look our way. He was expecting us to be there, and I wanted to make sure he knew. Just then Baby screamed, "BUBBA! BUBBA'S IN THERE!! HEY BUBBA!" Eye contact confirmed! He did not sing or dance but he did stand with the rest of his classmates in front of a large crowd of strangers, which is major progress in my book. As they exited, he also found us and we were off to their rooms for breakfast.

I acknowledge that I am a little nutty about my kids at times, but that is just who I am. I want to make sure that they are well cared for, and nobody can do that like I can. I also acknowledge that I may have "those children". The children who cry through an entire performance, while all the other children are singing, or the child who refuses to sit down when everyone else is in circle time. I understand that they may prefer Evander and I over anyone else, and that is ok with me. They are good kids. They are loving and kind, and they take care of each other. I don't mind getting looks because my child is a little dramatic...it won't last forever. We should cherish our rotten pumpkin while we can.

I'm a Big Girl Now!

Everyone who knows Evander and I well say that Baby is a perfect combination of the two of us. She looks like him, with her beautiful blond curls and her silly little smile, but she has my personality. She is the sweetest child in the world, but she has a look that would even stop the Wicked Witch of the West dead in her tracks. She is independent and smart. She likes who and what she likes and does not concern herself with the rest. When she decides to do something, she does it, which is why the events of Monday afternoon should come as no surprise.

After arriving home from school and eating a snack, Baby announced, in her slightly more country than southern accent, "Gotta go potty, Mommy". Now she usually says this when I am changing her diaper as a way of escaping. She will run to the potty and sit for several minutes, occasionally producing an end result (maybe once a week). When she said it this time, I followed her into the bathroom for her to try her luck, and she succeeded instantly. "WOW!" I said. "Good girl, Baby," she praised herself. After making a big deal of her accomplishment, I scooped her up to put on her diaper, but she fought me. Then she said, "Underwear, Mommy?"

I figured there would be no harm in putting underwear on her for a little while, since she had just gone in the potty. Well...that was Monday afternoon and as of today (Wednesday), she has been accident free. She has worn big girl panties every day and even wore them to school today. We have not been potty training or even encouraging it. After all, she is only 19 months old. She put her mind to it and decided she wanted to be a big girl. Now our house is diaper free!! YEAH!

Injection Phobia

As a child (and even as an adult), I hated the thought of getting a injection. My mother has told me stories of times that I kicked nurses or had to be physically restrained in the "shot room" as I affectionately called it (my pediatrician's office had a separate room that you went to receive an injection). I even heard of a time when I was so tense, the medication literally came back out of my leg and the injection had to be given again. As an adult, I was no better. In order to receive a TB test for my student teaching, I had to have medication prescribed. I hyperventilated every time my blood was drawn and would opt for 20 days of pills over one injection. So...it is no wonder that I freak out each time my children receive an injection.
Yesterday, Baby and Bubba visited the pediatrician for another sinus infection (for Bubba) to be diagnosed. While there, the doctor asked if they had received their flu shots and I admitted they had not. Baby took her flu shot like her momma. She screamed and cried before she even received the shot. She tried to push the nurse out of the door and was yelling "Go home? Go home, Mommy!" I, however, did as I should and held her down while they stabbed a gigantic needle into her tiny, yet chubby, little thigh, fighting off my own tears. Everything was fine until that afternoon.
While sitting in the waiting room at Bubba's feeding therapy session, Baby looked up at me, and I immediately knew something was wrong. You can always see in her eyes when she is sick, so I scooped her up and felt of her head. She was burning up! I was trying to act as if nothing was wrong, because I was in a room with immune-compromised children and parents waiting to pounce on a sick child. I held Baby and counted down the minutes until Bubba was with us. I have no idea what his therapist said to me because I was racing to the car, all the while cursing myself for letting my baby get a flu shot. We got home and I took her temp... 102.4. I searched for the flu shot handout they gave me at the doctor to see if a fever should be expected. It said slight fever...causes for concern: high fever. What the hell constitutes a high fever in the flu shot information world? For me 102.4 was high but was it high for a flu shot?
I gave her tylenol and was getting her ready for bed when I noticed she sounded a little short of breath. I mentioned it to Evander who said she just sounds a little stopped up. Relax mom! I was afraid she was having a reaction to the shot, but that was silly. I'm sure she will be fine, I continued to tell myself as I put her to bed. I then tried to relax and watch Grey's Anatomy, but I couldn't shake the feeling that something was wrong.
I made myself wait until after GA was over and went in to check on her. As soon as I entered her room I could here her breathing, or should I say lack of breathing. Her breaths were incredibly shallow and extremely rapid. I bent over to touch her forehead and noticed her little chest working so hard. Then I touched her and she was hot to the touch, so I ran for the thermometer... 103.7. "Evander!", I screamed. He came in to check on her, and she awoke and immediately began to cry. She and I rushed to the ER, while Evander stayed behind to look after Bubba.
At the ER check-in/triage the nurse began to tell me that ALL children have high fevers after the flu shot and she wasn't having a reaction. I explained that I understand high fevers but I do not understand a 103.7 fever and respiratory distress. I wanted to give this lady a piece of my mind but my baby needed me, and I did not have time to deal with ignorance at the moment. As she weighed Baby, she began to cry and that is when I heard it. It was the barky seal cough followed by the strider sound when she calmed. I had heard that barky cough three time last winter, and I said "That sounds like croup".
We were rushed back into a bed and saw the doctor almost immediately. The doctor confirmed my suspicions. "She has croup. It was just a coincidence that she had the flu shot today. Children should never run a fever over 101 with a flu shot, so you did the right thing (ha! ha! ignorant nurse lady)." They gave her a steroid, tylenol, and motrin and sent us home. I checked on her during the night and she was doing better. We visited our pediatrician this morning, where we received more steroids and she is doing even better.
I should have known that it wasn't the flu shot that gave her a reaction, but it was just my first thought. I have always had an issue with injections, but it was unfounded. As an adult and a parent of a child on the autism spectrum, I know way more than I want to about injections, and it feeds my fear. This is why I support green vaccines. I know that children need vaccines, but it just scares me to think of all the potential consequences.

Speech Graduate

Almost 7 months ago, Bubba, Baby and I walked into a speech evaluation, not knowing what was to come. He was barely speaking (1-2 words) and often grunted or screamed to communicate. He did not point at things and rarely made gestures. Through the course of the evaluation, we discussed his birth and language history. We talked about how he never babbled as a baby and would cry for hours. Then, Baby and I watched as Bubba tried to name colors, pictures, letters, and numbers. I felt horrible for him because I was watching him slowly drown in a sea of words. He was frustrated and anxious. Finally, he gave up and refused to pay attention any longer. At that point, the speech therapist explained what we already knew, Bubba had a speech delay.

We began speech once a week for thirty minutes, homework for the week, and group speech at school. I labeled everything in our house with a picture and a word. I began forcing Bubba to talk. When he grunted Evander and I would say "Use your words." It was horrible watching him as he refused to speak. He would scream and become aggressive, but we wouldn't budge. He had to attempt to say something or he would get nothing. Slowly but surely, words started to come and then, when we started the GFCF diet, words spilled out. The sea of words he was drowning in were inside of him all the time. Now, though, it was a waterfall of noun and verb combos, followed by complete sentences. It was amazing!

Now, let's fast forward to today. Bubba went into speech today reluctantly. I warned the therapist that it was "one of those days", so I wasn't expecting much of a report at the end of the session. What I got, however, stunned me, no matter what the day.

"It is time for Bubba's re-evaluation," the therapist said.

"I thought it was around that time," I said.

"And, Bubba has met all but 1 of his speech goals and seems to be staying on target" she continued, "so I really don't see any reason why he should continue."

"Continue what?" I questioned.

"Continue speech," she explained.

"Really...we're done? Just like that? He is appropriate for his age level?" I stammered.

"Yes, he is. He has really done fabulous and made tremendous progress in such a short amount of time," she said.

I immediately picked Bubba up and gave him a big kiss. I expected that he would graduate from speech before kindergarten, but I had no idea it would be so soon. He is, after all, speaking in sentences and responding appropriately to questions, but I am still in shock. All I have to say is...speech recovery, check!

We will still begin speech therapy through the school district when he begins PPCD. This is so that he will maintain his speech and begin to work on articulation, but overall he is at age level. One less therapy to attend!

Don't Discount a Good Bribe

The three of us do a lot together, and we do it without help. Bubba, Baby, and I can stroll through Wal-Mart, breeze through the vet, run through the doctor's office, and jump in (and out of...more like a bunny hop) a restaurant without a second thought. We do things, just the three of us, all the time and without a second thought, but the thought of me having two children alone at Children's Hospital while one is sedated and getting a head CT made me pause. In fact, it made me twitch a little.

Four days from the appointment, I began to wonder how I was going to handle screaming Baby (because our appointment was at 12:00; her nap time) and screaming, partially sedated Bubba at the same time. Evander, I knew, was out. He had an all-day meeting, so that was out of the question and my good friend, Momma Bird, had the flu. Evander thought of a person who turned out to have better things to do than watch my child, so I was stuck. I had resigned to the fact that I would strap Baby in the stroller and listen to her scream while I cared for Bubba, who was the one who really needed my attention.

At the last minute, though, I got lucky. Evander got sick (not so lucky for him) and had to come home early from work. YEAH! (Normally I would not cheer about my husband's illness, but this is not a normal situation.) He came home just in time to put Baby to bed, so Bubba (who was already screaming because he wasn't allowed to eat because of sedation) and I were off to the hospital. On the drive over, I got a crazy thought in my head. What if he didn't have to be sedated? After all, without Baby, I could solely focus on Bubba, and I knew that I could convince him to be still. I just had to! He would be so angry and out of sorts if he was sedated, and what if he regressed a little? I couldn't chance it!

After filling out mounds of admissions paperwork, we headed to the radiology department to check in. I approached the girl at the desk to check in and then went to sit. Then, I went for the re approach. "Is there any way we can do a test run?" I said to her as she gave me a puzzled look. "Excuse me, ma'am?" she said. "You know, can we try this without sedation first?" After calling the radiologist and giving me a not so reassuring look she said the radiologist would come and speak to me. I have it in the bag, I thought!

A tiny brown skinned, dark headed man emerged from the forbidden entry doors and glanced at me from around a post, while he was pretending to look at our paperwork. I decided I would stare him down, so he might be intimidated. I was, I presumed, about the same size as him, but had a much more determined look than he could ever pull off. He shuffled over from behind his hiding spot and it began:

"Ma'am, I am Mark, and I will be doing Bubba's head CT. He is 2 right?"

"Yes."

"Well, most 2 year olds are unable to sit still for this type of thing."

"It lasts a maximum of 5 minutes, correct."

"Yes, that is correct."

"Well...he isn't most 2 year olds, so lets try it."

"I don't think it's a good idea. He looks very rambunctious out here and I don't want to expose him to any extra radiation."

"His waiting room appearance does not correspond to his head ct appearance, so lets go."

"I really don't think this is a good idea."

"Well...he's my son, not yours, and I would like to try it."

"Ok, but I will not start the scan until he is completely still. If he is moving then we will have to stop and sedate him."

"Fine"

Then, Mark led us to the room. Before we entered I knelt down next to Spencer and said, "Let me see your eyes. This is a big doughnut. You are going to slide in the middle of the doughnut, and its going to take your picture. You like doughnuts right? It won't hurt you. You have to be VERY still though. You have to freeze and not move anything while you are in the doughnut. If you are completely still and let this doughnut take your picture, you can have a Dr. Pepper when you are done." As I finished, a smile crept across his face, and I could tell he was thinking of a nice Dr. Pepper. Finally he said, "and a snack?" "And a snack," I said.

He hopped up on the table and let complete strangers position his head and body. He was completely limp as they moved his head and placed the lead apron on him. I held his hand and they agreed to begin. One thing I had forgotten to tell him, though, was the noise the "doughnut" would make, and I could feel him tense. Then I heard, "Mommy?" "You are ok! I'm holding your hand. Don't move!!" I kept reassuring him, as I heard it again; "Mommy?" "Do you want that Dr. Pepper? Then DON'T MOVE!" "Mommy, my tongue moving!" I tried not to laugh as I said "It's ok, just don't move your head."

In no time he was done and off the CT. The radiologist and nurse were amazed. They both said they have never seen someone so young sit through that before. They were lavishing him with praise, but he didn't care. He wanted his Dr. Pepper, and you better believe he got it. I was SO proud of him that I knew I could handle a little hyperactivity over sedation. He also knew that I always keep my promise, or it might not have worked. I know books and discipline gods say not to bribe your children, but I say never discount a good bribe (or a sick husband).

PPCD Evaluation

Today was Bubba's PPCD (public preschool for children with disabilities) evaluation. It consisted of an evaluation of his cognitive, behavioral, physical, mental, and speech abilities and a parent interview. I have been very unsure as to how this evaluation would go, despite the fact that we have had several private evaluations performed. The school district looks at "issues" from a classroom standpoint (how Bubba would function in a classroom and what issue would impede classroom progress), whereas the private sector seems to look at "issues" from a societal perspective (how does he function in society and are his behaviors in line with social norms).

Shortly after 8:30 am, we were called into the evaluation room. Just outside the room, the diagnostician instructed me to wait in an observation area and say good-bye to Bubba. After stealing a quick kiss and informing the adult that when he says potty he means NOW, I hurried off to my designated waiting area while she took Bubba into his room. As I entered my dark space, I noticed that it was cluttered with old filing cabinets and too small chairs. There was a mini table pushed up against the one-way glass that I could see Bubba's little face through. I immediately felt his nervousness and anxiety as four women looked down on him, watching his every move and taking notes about each single word he said. A team of four (occupational therapist, diagnostician, speech-language therapist, and psychologist) questioned him and played with him. They studied his every move, as I tried to see how he was doing. I scooted my chair one way and then the other. I stood, and I sat. I was getting frustrated because I really had no idea what was going on in the room next to me. It was like being in a movie where the person stands outside and watches the family through the window. You get the idea of what is going on but you have no idea what is being said or how questions are being answered. I finally gave up and filled out the paperwork I was given, only glancing up occasionally to make sure he was still content. After 1 1/2 hours, we were done.

Two hours later, I returned for the parent interview, while Evander watched the kids. They asked me about his sensory issues, his autistic behaviors, and his social interaction. They asked about his birth history, developmental history, and speech history. They wanted to know everything that had happened in the past 3 years in one hour. As a teacher I understand "just the facts ma'am" but as a mother I have a lot of sometimes, buts, and every now and thens to add. It is so hard to disclose all the warning signs I saw or bad feelings I had over the past three years.

At the end of my interview, they disclosed to me that the team will be recommending Bubba for special education services (PPCD and speech). I was happy and sad at the same time. In my head I didn't think he would qualify because he has come so far, but they reminded me of all the "little things" (that is how I see them compared to the other issues we were dealing with) that I had put on the "worry about that later" shelf. The team found that Bubba is of average or above average intelligence but exhibits many autistic characteristics. For instance, he barely spoke in his evaluation and when he did, he would use one-two word phrases. He is unable to decipher emotion and cannot read facial expressions. He does not engage others in his play, lines everything up, and flaps his hands.

Compared to the lack of verbal communication, severe tantrums, and sleep problems we had been having, I sort of forgot about these things, thinking I could tackle that later. I guess, though, now is later. He is communicating (he speaks at home so we know he is now capable), rarely has a severe tantrum and has been sleeping through the night for a week (although he is currently sleeping on the couch at night). So...what better time to go after emotion and social skills. I am so proud of how far he has come and I know he will come even further. Bubba will begin PPCD and speech when he turns 3 and continue to grow and recover.

New School

As a teacher, I never understood those mothers who lingered awkwardly outside the classroom door on the first day of school. They had tears in their eyes as they watched through the tiny window by the door and would wave occasionally. These moms were always found in the kindergarten pod, but a few could be found throughout the school. I always thought "Let 'em go" to myself as I walked past these sniffling mommies, but I realized today, as I pulled away from Bubba and Baby's preschool, I am one of those mothers.
Bubba and Baby began their new typical preschool today with much excitement and nervousness. Baby drug her new pink Princess backpack behind her to the car as she held tight to Lambie, while Bubba was collecting cars and his Lambie in a bag. We collected his backpack and groceries (because he cannot have the snacks they provide) and hurried out the door. When we arrived Bubba asked "Are you coming, Mommy?" I stopped and explained that I was dropping him and Baby off but would return after his nap and snack to pick him up.
Bubba put on his backpack, grabbed his Lambie and walked confidently into his new room without looking back. I was able to steal a quick kiss before he disappeared behind the door into the "orange room". Then it was Baby's turn. She had, of course, already found the library and was looking at a book in the 30 seconds she had been left alone. I scooped her up and walked to deliver her to her new room. Before I handed her off, I warned her teacher that she was a crier. With that, her teacher plucked her from my arms, and I vanished after a quick hug and kiss.
I barely made it to the car before my eyes filled with tears. I would not admit it, but I had been nervous since Sunday about their new school and now the day had arrived. I was worried that Bubba would eat something he should not or regress completely by the time I came to pick him up. I was afraid that Baby would not stop crying out for me and have to be picked up early. They were both fine, though. Bubba had two potty accidents, but I expected that. Otherwise he had a great day. Baby stopped crying before I even walked out the door and played her heart out. They both ate their lunch and took a nap.
I know that their new preschool will be so much better for them. They will make new friends and learn new skills. It will also be good for me. I will have time to myself to run errands and clean the house. I hate to see, though, what kindergarten will bring, not for Baby and Bubba, but for me. Leaving them is horrible. It is my problem, though, not theirs. I am kidding myself if I think I can go back to work!

This Path

The news that I was pregnant with Baby shocked and overwhelmed Evander and I. How could we possibly be pregnant when our son was about to come home? We had been through fertility treatments and miscarriages and decided that wasn't the road we wanted to travel. Life is a journey, afterall, and there are going to be decisions to make. Which direction do you turn?

We quickly found out that, while we may turn one direction, God wants us to walk another path. In all honesty, I wasn't initially happy with His decision. I had come to terms with the fact that I would not be able to carry a child, and I was ok with that. We were about to welcome our son into our home, and this pregnancy could mess things up. I felt guilty for adopting a child when I could have a biological child, and I felt guilty for having a biological child when I was adopting. Would I give more attention to one over the other, or would I love one more? Obviously God knew more than I did at the time (as is always the case), and we were blessed with two children, 13 months apart (Bubba was only home 7 months before Baby arrived).

Now, I cannot imagine my life without our beautiful princess. She is easy going and carefree. She lights up the room with her smiles and loves almost everyone she meets. She is intelligent and fascinating. When you hear her laugh, you can't help but crack a smile. She can pooch out her lips, cock her hip to one side, and swing her arm like the best diva who ever lived. She doesn't take anything from anyone except her Bubba, and she rarely has a bad day.

She is this amazing ball of energy who forces Bubba to come out of his comfort zone just a little more each day. She grabs his hand and insists that he play with her. Even though she is only 18 months old, she reminds him to say thank you and excuse me. She won't let him have something until he uses his words, but she also knows when to give in. She loves him no matter how many punches or pushes she receives. She tells him night-night and I love you every night, whether he acknowledges her or not.

Baby is this phenomenal little person that I could not imagine my life without. She brings happiness into my heart and makes the bad days full of light. I credit her, as much as the therapies and supplements, with Bubba's recovery. If it weren't for her, he wouldn't have a forever friend, who will always be there to support him. Both of these children were meant to be in our lives, and there isn't a day that goes by that I am not thankful for them. I am so thankful for this path, this life, this family!

Bubba mini-update: Bubba is now counting to 10 on a regular basis and knows his colors. This morning he pulled his pants down and said "I need my B12!" referring to his injection. He is regularly communicating in complete sentences and took his own shirt off for his bath last night. This morning he dressed himself (except socks) completely. Next week he will start neurotypical preschool (normal preschool) and will be evaluated for PPCD (public preschool for children with disabilities) on Nov 4.

Long Term

Ever since we received Bubba's diagnosis, Evander and I have pondered the long-term implications. I, myself, have often wondered if he will have a best friend, a sleepover, or a birthday invitation (that does not involve parents' friends). Will he play soccer, go to college, or have a first kiss? Most parents do not even think of these questions, because it is assumed, just as I assume these things for Baby, that each one will happen. I, however, cannot assume these things for Bubba, because only time can answer these questions, and the more time that goes by, the more I begin to wonder.

I have now started to question the long-term medical implications. In my mind I see Bubba, age 18, in his dorm room with a Dr. Pepper in hand. He has on raggedy jeans that he hasn't washed in weeks and a green worn t-shirt with the outline of a white car on it. He is barefoot, lying on his bed, watching tv. Bubba desperately needs to study, but he is exhausted from the sedating-effects of the Seroquel. His roommate has gone to McDonald's, but didn't ask if he wanted anything because his special diet makes ordering way to complicated. The night before he went to a keg party but couldn't drink because the only GFCF beer is Redbridge, and it is NEVER in keg form. Suddenly his cell begins to vibrate on the desk. He doesn't want to answer because it's his mother, but he does anyway. "Did you take ALL 12 supplements yesterday? And your glutathione cream? And your B12 injection?" Terribly annoyed he answers,"Yeeesss!"

This is not what I want for my son, but this could be the reality (without the nagging mother of course). We do not know if he will need to stay on his GFCF diet forever or if he will need the supplements to sustain himself. We hope to have him off the Seroquel, but after a trial run off of it, found that he just can't function without it right now. He constantly hears me saying, "You can't eat that! It will make you sick." or "You have to take this because it helps you talk and think clearly." He is taking so many supplements, but he needs them. Right now we just don't know!

All of the unknowns have lead me to a conclusion. I can not worry about the long-term. I cannot concern myself with college or prom or sleepovers. I cannot worry about driving or friends or GFCF beer. That is why my "long-term" is now kindergarten, and even that is 2 years away. We have to focus on the here and now and on getting him better. We have to focus on getting him into a mainstream kindergarten and all that entails. I just want to see to it that Bubba is happy!

Wet and Wild at the ENT

"I've gotta go potty." Those four words have become a staple in our house. We hear them as often as hello and good-bye, but they almost always come at a bad time. Those words also do not necessarily indicate the actual need to use the bathroom. They could mean that Bubba just wants to stretch his legs or get out of the car. They could mean I'm not eating another bite or I refuse to sit in timeout, but no matter what the true meaning, I kick myself into high gear when I hear them. There is, after all, a chance that those four words actually mean "I've gotta go potty".

Well...I heard those words yesterday as we sat in the waiting room for Bubba's ENT appointment and wanted to die. Just moments before we had run down the hallways and through the elevators trying to find the ENT's new office. Finally we arrived in the waiting room, at exactly the right time, for the receptionist to hand Bubba a box (what kind of person does this) of stickers for him to pick from. A small riot ensued between Baby and Bubba before I could wrestle the box from the two of them, throw 2 stickers to the ground, gently place the box back on the receptionist's desk, and politely thank her for that brief moment of insanity. I turned, grabbed my two monkey's wrists, and went to sit down, as the receptionist sat in her chair, wide-eyed and stunned.

We finally sat down when out of nowhere came, "I've gotta go potty". As I looked up at him, I immediately knew it was too late. He had stopped banging on the metal garbage can and was holding his pants. I watched as his jeans began to turn dark blue in the inseam. Then, I looked at the sky, screamed inside, and approached the now-recovering receptionist. "Um, we have a little issue. We need to use the restroom."

"Well...you are next in line." That rules out running for the car, where his extra clothes were. I knew if we lost our place in line, we would be there all day, so I had to make it quick. We ran to the restroom, where I threw his underwear in the garbage and blotted his jeans with paper towels. It was all I could do at the moment. We just had to make it to the back and then I could think. We ran back to the waiting room, as I announced our return.

Just as I sat back down, Baby looked up at me and said, "I poo-pooed." Seriously!! So, I scooped them back up, careful not to touch the pee pants and went back to the receptionist. "I need to change her diaper but we will be right back."

"Ma'am, they are about to call you," she explained. "I understand, but she has poop all over her, so tell them I'll be right back."

I cleaned her up and tried to keep Bubba from sticking his head in the toilet as quickly as possible. We were just about to leave the restroom when Baby thrust Lambie at me and said "Eewww!" Somehow, she had gotten caught in the aftermath and needed an emergency bath, so I hurriedly bathed the baby doll in the sink before running back out to the waiting room. We emerged only for the receptionist to say, "They just called your name." She could tell, however, that this might be a bad time to put me at the back of the line, so we got called back.

Once in the back, I was able to appropriately address Bubba's situation before the ENT entered our room. She took one look at Bubba and said "Come with me". That is never good! She took us to a room where she irrigated and suctioned out his nose while I physically restrained him, all while Milo and Otis was playing in the background. She then wrote us a prescription and scheduled a head CT with sedation.

We emerged from the ENT looking like we had been ravaged by a tornado. Bubba was wearing a t-shirt and a diaper (his jeans, socks, and shoes were soaked with pee) with tears running down his face, screaming "Kitty cat! Kitty cat!" He was terribly worried about Milo. Baby was at my side with snot running out of her nose, a horrified look on her face (because she had just witnessed Bubba being held down and suctioned out), carrying a wet baby doll. I couldn't even begin to tell you what I looked like, but I bet it wasn't pretty. All in all, I suppose it was just another visit to the doctor!

Yuck!

"Do I smell like poo? Smell my hands! Do they smell like poo?" In a typical house, the wife might say "What are you talking about?" or "Gross!!", but this is not a typical house. What did I do? I smelled his hands, confirmed the smell, and went to investigate.
Each night, before we go to bed, Evander and I make sure the doors are locked, refill milk cups, and close the blinds. Evander opens Bubba's door and goes in to check on Baby. He covers her up and takes her milk cup. (Don't worry. Yes...she does go to bed with a milk cup but she never drinks it. She just thinks she needs it in bed with her.) On this night (Thursday), however, when he was feeling his way around her pink cotton sheet and fuzzy mermaid blankie for her cup, he happened upon a foreign texture and immediately ran from the room. This is when he came to me and we both went back in. Just as I turned the corner I smelled all the evidence I needed.
I went out to prepare my work station. I set out wipes, a diaper, and balmex and went back for my project. Despite being covered in poo, she was sound asleep, so I carefully scooped her up and carried her to the couch. Trying desperately not to wake her, I delicately changed her diaper, as if I were handling an egg baby from home-ec class. She was back in bed in no time and back to sleep in an instant.
When I awoke the next morning, there was no need to wonder what kind of day I would be having. I knew one baby and possibly two would be sick, and we were going nowhere (except Bubba's parent-teacher conference). We spent the day in our jammies, watching Playhouse Disney, and eating crackers, bananas, and applesauce. Both kids were complaining of tummy aches, but Baby was still on the go. I knew Bubba must be feeling bad because he sat on the couch most of the day. Around two o'clock he began vomiting, which was a nice addition to the day.
In the end, Baby began to feel much better and was ready to go by dinner time. She changed her clothes (to a purple-silky Cinderella nightgown), played outside, and ate her noodles for dinner. Bubba, however, began to run a 103 fever, and his face started to swell, so he was off to the urgent care. He came home with an antibiotic, a middle ear infection, and a stomach virus.
Everyone is doing much better today, and there are no weird smells yet. Evander did wash his hands carefully and will now be a little more cautious when looking for that milk cup.

Chaos

Thursday morning I awoke to a fairly busy day, which was good, because I knew it would keep my mind off of the events to come. My mother was having outpatient surgery to have her gallbladder removed, and Baby had her brain and lumbar MRI coming up on Friday. Little did I know, however, that these "events" were just the tip of the ice berg.

By 2 o'clock I began to worry because I had no heard from my dad, and I had a feeling something was wrong. At that very moment, my sister called to tell me that Momma was out of surgery and doing fine. For some reason, though, I could not shake the worry away. A little later, I received a call that my mom was in ICU and needed blood.

After many calls and a bad nights sleep, Evander and I arose at 4:00 am to get ready for another arduous day. We had to have Baby at Cook Children's Hospital by 6:00, which meant we had to leave the house by 4:45. We scurried around the house stuffing backpacks full of crayons, books, snacks, and toys. We made lunches and hurriedly packed the car. The kids were whisked from their warm, cozy beds and thrown in the chilly car, and we were on our way.

Baby had her blood pressure and temperature taken, had a vitamin taped to her butt (to mark the spot of her dimple), her head measured, and changed into a baby hospital gown. She hadn't eaten since the night before, but she never complained. When it was time for her to be sedated the anesthesiologist and nurse laid her own the bed and placed a mask over her mouth. Baby just laid peacefully, holding onto her Lambie with one hand and my fingers with the other. She was so calm and peaceful, while I was fighting back tears. I was thankful to be there to assure her safety and comfort, but I was also terrified and extremely uncomfortable at the same time. As she began to drift off, the Dr. warned me that she might look funny and she did. Her breathing became rapid and her chest began to quiver. Her eyes were rolling around in her head. I tried not to look horrified as she tried to keep her stare on me. Soon it was over, and she was asleep.

What seemed like hours went by, until I was called to come back and see her. When I rounded the corner I heard her screaming "Mommy". It was not a sad scream or a scared scream, but the scream of a pissed off little girl. It was a scream that said "Where the hell have you been and what did they do to me?" I picked her up as she fought, kicking, hitting, and crying. She was demanding that her IV be removed but that could not happen until she had something to drink. Eventually the IV was removed and the kind nurse taped little cotton balls to her hands. This ever so angry Baby quickly tore them off and threw the wads of tape to the floor, followed by her sippy cup, Popsicle, and bottle.

Once she had calmed down and changed clothes, we were off to the neurosurgeon's office. I was hoping for good news but feeling like we might not receive it. He began with the brain. The MRI showed large ventricles (which is why we were there), and the large ventricles appeared to be the same size as they were in the head CT, which is good. The problem is that, since we do not know what they were like before the head CT, he does not know if they are growing or just large. Because of this, he will continue to monitor them to see if they get larger from this point.

Now to the back, or sacral dimple. Everyone has a portion of the spine called the phylum, which is the "end" of the spine. A "normal" phylum is very thin and allows the spinal cord to extend beyond it and onto the remainder of the back. Baby's phylum is fatty and larger (I have decided that everything about her is just bigger) than average. This indicates a tethered, or tangled, spinal cord and will need to be repaired through surgery. If it is not repaired, as Baby grows, the spinal cord could tighten and she could lose "ability" in her legs and bladder (permanently).

With that lovely information in tow, Evander and I packed up our stuff and our children and headed out to the car to receive another update on my mom.

On the way home we discussed when Baby should have surgery and if I should go home to help my momma. We were interchanging topics as if we were discussing what to have for dinner.

I said, "She sounds like she is doing good, so maybe I shouldn't go home. What do you think?"

"I think we should have the surgery after the holidays," remarked Evander.

"I agree. I don't want her in pain during Christmas. That wouldn't be fair. Maybe I should go home."

"That's up to you!"

We went on like this all afternoon until we received a call from the neurosurgeon. Evidently, when he gave us the news, he had not received the "official report" from the radiologist. The radiologist disagrees with the neurosurgeon. He does not believe that the phylum is very fatty, but our neurosurgeon is sticking to his guns. Where does this leave Baby? We are to watch her for signs of trouble (leg or back pain, loss of bladder control, loss of leg ability, ankle turning or more severe pigeon-toes), while we are also watching for signs of possible hydrocephalus (sleepiness, head growth, vomiting, "out of it", trouble walking). He wants to follow-up in 6 months.

Evander and I were, first excited and then angry with the new information. Did someone make a mistake? Who should we believe? Where do we go from here?

I'll tell you where I went. On Saturday morning I got a call from my mom asking me to come home (in not so many words). I ran home and booked the next flight out, which was 1 1/2 hours from then. I threw some things in a bag and headed to the airport. When I arrived at the hospital, I knew my mom wasn't doing well. Long story short, she required 2 units of blood and had fluid in her lungs. She was unable to breathe without oxygen and could not eat. I stayed with her until Sunday night, when my aunt came in to take my place.

Early Monday morning, I flew out, and Evander and the kids picked me up at the airport. We were headed to Austin to see our DAN! doctor. They were very impressed and excited with Bubba's progress and gave us more to think about. The doctor really wants to chelate, which is metal detoxification, but I have my reservations. Evander and I will have to do lots more research before we agree to this treatment.

I know this post is kindof all over the place, but so much has gone on in the last few days. My mother is doing well at home now, and Bubba is back at school. He did not qualify for his physical therapy eval on Tuesday, but I think that is good news. He is doing well at feeding therapy, too. Baby is just now getting back into her groove, and Evander is back at work. There is always chaos, but it has never been like this!

Do I Go?

Do I go back or not? This question has been floating around in my already occupied mind since last year at this time. I have been contemplating going back to work, back to teaching, but I don't know if I can. I want to leave my crazy life for 8 hours a day and just have a little time to myself, but I'm not sure I can let go of everything that entails.
Weekly GFCF menus, therapy 4 times a week, special preschool, countless supplements, and tantrum control is what my day currently consists of. I count words instead of listening to their meaning. I police food to make sure a goldfish doesn't end up in the wrong hands, and I count protein like a bank teller closing out her drawer. I hide supplements in juice and sit in waiting rooms so Bubba can attend his weekly therapies. Often, while I am sitting, I think of what I could be doing. I could be shaping young minds or grading papers. I could be watching recess or policing the lunchroom. I miss what I do, and I would love to forget my day as it is now.
What is holding me back? The very reasons I want to go to work are the very things holding me back. Our family has had to make sacrifices in order for Bubba to recover, and he is. He is doing so well. What if it stops? What if he regresses? He enjoys his little routine, and I am a part of that. He has come to expect me on the other side of the therapy door saying "Great job!" He has come to understand that the supplements make him better and wheat/dairy makes him sick. He knows I count his words and then respond, but he doesn't mind. In fact, I think he likes the extra attention. He knows I need him to "take a breath" when he gets upset, and he knows I understand him when no one else does. We have all put so much into his recovery. I would hate to be the one to derail the train.
So, for now, I continue to imagine what I may do come January. Do I fill out an application or do I stay at home for one more year? Only time will tell.

Good Things Do Happen

"Bad things happen in threes." That is an old saying that I have heard numerous times. While I am unsure of its origin or basis, I do know that many people speak of it as the truth. Well...I am here to change that. I would like to officially say that GOOD things happen in threes, and I have proof.
Our day began as usual, the frantic running around, making lunch, finding clothes to wear out of the pile by the TV, and cooking breakfast while listening to Playhouse Disney in the background. Evander scarfed down his yogurt, while I filled out paperwork for the children's first dental appointment (yes...I am insane for taking on the dentist), and was out the door with briefcase in hand. Baby was chasing after the dog, and Bubba was on the other side of the counter from me. After looking up to make sure everyone was still alive, I dove back into my paperwork, and that is when it happened. From the other side of the counter, a little voice casually said "I love you Mommy." I put my pen down, looked down at the big brown eyes peering at me from over the counter, just as my heart stopped. Maybe it didn't stop, but it definitely skipped a few beats. I tried to recover quickly and casually responded, "I love you too", but my stomach was turning flips, and I felt lightheaded and excited and shocked all at once. He went on about his business of torturing Baby but I did not rebound that quickly. My son had just communicated a feeling for the first time, and I had the pleasure of it being directed to me. Don't get me wrong; he has said I love you before but only after one of us has said "Say I love you." This statement was totally out of the blue and unprovoked and AMAZING! I hurriedly called Evander and went about my day.
Soon we found ourselves waiting impatiently in the dentist's waiting room. I had explained that the dentist wanted to check their teeth, and I also threw in that there would be NO toy if there was crying. "The dentist doesn't like crying," I had warned. As we settled into our little cleaning room, the hygienist said "So Bubba, why don't you go first since you are the big brother?" I was expecting whining and hesitation, but what did he do? Bubba jumped right up in the chair, and, with a little encouragement, laid down to have his teeth brushed with the real toothbrush (the one they use on us). She was also able to floss and count his teeth with no trouble at all. This is from the same child who, at one time, would not even open his mouth to let a toothbrush in. I was SO proud of him, and the day wasn't over.
Our final stop of the day was speech therapy. The therapist came to get him, but he didn't want to go. I thought we were going to have a tantrum on our hands, but, with some persuasion, he decided to go back for therapy. Before long Bubba and the speech therapist emerged from the door and she knealed in front of me to give me the low-down. Suddenly, I found my heart stopping for the second time in one day. The speech therapist was telling me that Bubba just met ALL of his speech goals, AND he seems to be at his appropriate age level for speech. I could not believe what she was saying, and at the same time I was ecstatic! She went on to ask if I had anything that I would like her to work on because he is doing so well, she doesn't know what else to work on. WOW!
I know that he probably shouldn't surprise me like he continues to do, but he has just come so far. It was only July when he was using a one-word screaming combo to communicate, and, as of March, he was still unable to brush his teeth. Now he is speaking in sentences (he said a 7 word sentence today) and brushing his teeth twice a day. Many people question our methods, but these three exceptionally good events prove that we are moving in the right direction. Who needs old sayings? GOOD things can happen in threes too!

Regression

Since beginning our journey of recovery from ASD (autism spectrum disorder), I have found there to be two different forms of regression. My completely unscientific observations have discovered permanent regression and temporary regression. Permanent regression happens for numerous reasons and requires many interventions to try and recover what was lost. It may last months, years, or forever. Temporary regression happens suddenly but only lasts for a short period of time.
Permanent regression is a big fear of mine. Bubba has come so far with his speech and other skills that I would hate for it all to disappear. That is why I am seriously considering the flu shot and other vaccines that still lie in wait for Bubba. Our pediatrician suggested we call in October to schedule an appointment for the flu vaccine, and I plan to do that for Lilly. I am petrified, though, of the possibility that Bubba may not "recover" from the vaccine and even regress. My thought is I would rather deal with the flu for a few weeks than a loss of speech forever. I also have to schedule his 3-year-old well visit for January, and I know I have a tough road ahead because I think Bubba still has a few vaccines to receive (because he was behind since he had to have the "do-overs"). He is still small for his age (weight-wise), and he has a persistent cold. This could make him more susceptible to vaccine ingredients and put him at risk for permanent regression.
While this is floating around in my stressed-out mind, we have been dealing with temporary regression at home. Temporary regression has happened before and always will, I believe. It happens when my mother leaves (after visiting us) or when there is a major change in routine. It happened when we started the anti-fungal and now it is happening with the B12 injections. We began the injections on Monday and, within minutes, Bubba changed. He began screaming and whining. He stopped speaking and began to whine instead. He acted helpless and was very defiant. He had tantrums that required restraint and was extremely aggressive. This slowly wore off as time went by, until it was time for the next injection (every 3 days), and it happened again.
I contacted our DAN! doctor, who said this was normal and to try and stick it out if we could. Well...Evander were discussing it this morning and trying to decide how much more we could take. We had just about decided to stop when Bubba counted to 10. He has been counting to 3 for months, but he had never counted to 10. All alone and unassisted he did it again!!! We were SO excited, and I knew then that our minds were made up.
Temporary regression and permanent regression are both scary in their own right. The problem is that you never know if temporary regression will turn into permanent regression. This is a constant fear that I live with every day. The moment I see an "old behavior" I immediately tense up and think "Where did that come from? What happened? What triggered that? How do I get rid of it?" It is and will be a never-ending anxiety for Evander and I. Therefore, we will remain hyper vigilant and extremely observant and over concerned. Is it temporary or permanent?

Beyond Pissed

Imagine watching your child slowly climbing a flight of stairs. She is carefully holding on to the chilly metal railing and stepping one foot at a time. Suddenly, though, she falls and begins to scream. Blood is streaming down her leg, and the cut looks bad. You scoop her up and rush her to the hospital. When the doctor comes in you say "She fell on the stairs" but he says "No this isn't a stair injury. She did not fall." "But I saw her fall," you exclaim. "I was right there and she fell on the stairs." "Well...you are wrong because there is no way this could have happened by falling on stairs." Absurd, right?
In her new book, Jenny McCarthy uses a similar stair example to explain how parents feel when going to their pediatrician for autism and its cause, but I am going to take it a step further. When Evander and I went to visit Bubba (@ 3 months of age) in Guatemala we noticed some "different" behaviors but pushed them aside. The same happened at our second visit (@ 5 1/2 months), but we could no longer push it aside when he came home to us. By 9 months we began working with ECI (early childhood intervention) and by 15 months we were searching for more help. Something just wasn't right, and, as his parents, we knew he needed help.
Finally, after much determination and many doctor visits, we received our diagnosis of PDD-NOS in June from a child psychologist. This diagnosis was also confirmed by a developmental pediatrician in July. It was not the diagnosis that we were looking for, but it is what we got. We wish more than anything that Bubba was typical, but that is not the case, so we are dealing with it one therapy step at a time.
This is why I was beyond pissed this morning when his preschool director told me "I'm just going to tell you...he's not autistic." "Excuse me," I uttered. "I mean, really, he MAY have a very minor speech/language delay but that is it and it is minor if that" she continued. Immediately my blood pressure rose quite a few levels, but I planted myself in the doorway because she evidently wasn't finished. "We see no behaviors here. He shares and is such a good kid. I mean he is receiving so much one on one here," she went on, and this apparently gave her mini-me assistant director the go ahead to butt in. She began, "I've worked in McKinney PPCD and I can tell you that class size there is crazy and he might be in with more severe kids there. He does have some autistic tendencies but just tendencies and he's SO YOUNG, SO YOUNG!" At which point Miss Director exclaims, "Yeah, SO YOUNG!"
First let me say, hell yes he is young. Isn't early intervention the key to kicking ass and taking names with autism? I wasn't about to sit on the sidelines while my child continued to deteriorate and say, "Well, I think he's too young for a diagnosis." That's just not how I play the game.
Secondly, let me say that these two morons obviously didn't see Bubba before we started our biomedical treatments. They missed the months that I tried to comfort him as he screamed (not cried) for 18 hours (with little break) or played with him for hours just trying to get him to sit up on his own. They were not there to feed him baby food that I knew he would choke on (or even worse vomit) or to physically restrain him for over 30 minutes because he was a danger to himself and Baby. They must have missed him banging his head on the glass over and over again or continuously spinning in circles without getting dizzy, and I'm sure they missed the days that I spoke in sounds just hoping that he would babble one time.
Now, many of you know that I do not take kindly to these types of things and I usually go ape shit (for lack of a better term) on anyone who would even think of making a remark like this, but you will be proud to know that I kept my cool. I looked at my son, flapping his arms in the hallway, smiled at dumb and dumber, and took Bubba to the restroom. I knew I needed a moment to breathe or I would lose it. I stepped into the restroom, took 2 seconds to gather my composure and left.
I want to say that Evander and I do not find joy in the fact that Bubba is on the autism spectrum, and trust me when I say that going to therapies and doctors is not how I want to spend my days. He has come so far in the last 6 months, and I know he will continue to grow. We want nothing more than for Bubba to be considered typical, and maybe one day he will be, but do not tell me I didn't see my son fall. He fell and he is injured. Maybe one day his injury will heal and only a scar will be left in its place but DO NOT tell me I did not see my son fall. HE FELL!

Special Report

I know that I have already posted today, and I usually don't do this but we have breaking news. Two of the three little ones in our house are officially potty-trained. Belle, the dog, has decided she would now like to pee somewhere other than our carpet. She has, in turn, opted to use her pee-pee pads and even barks at the door to go outside. It has been an unbelievable turn of events, and I'm not done.
Also, Bubba has thrown his diapers to the curb (except for bedtime). He has worn big boy underwear to school for 3 days with no accident and has also attended speech therapy and occupational therapy with no accident. He even told his OT he had to go potty. This is HUGE!!

Terminology

*This is one of the first photos we received of Bubba (I found it yesterday). He was just a few weeks old, with his foster mother and her mother.


Everywhere you turn, there is different terminology to be used and only a set group of people may be privileged to learn it. You may find this in the work place, within certain social circles, or hanging out with a younger generation. Nonetheless, it is there. For instance, Evander's day is filled with things like spend, dry runs, and the ESC. He speaks to vendors and customers about the best product line for bradycardia, syncope, and atherosclerosis, and I have no idea what he is saying. When Evander and his mother begin a conversation, I might as well leave the room because it is a foreign language to me. If you are not in this particular environment, then you, likely, have no idea what the other person may be talking about.


So, it should come as no surprise to anyone that the same holds true for the adoption community and the autism community. Each of these "communities" has its own glossary of terms, for which outsiders are now privy to, but one difference remains. I have found that, at work, if I say TEKS instead of TAKS, I am corrected and we move on, but that is not the case with these 2 communities. A fine line exists between appropriate terms and downright offensive ones, and an outsider shines like a full moon on Halloween.


I will begin with the adoption community, because I was just looking through some old emails yesterday from when Bubba was in foster care. Even the subject lines of the emails would seem foreign to some. There were emails about pink slips and PGN, some about DNA and fingerprints. I began to giggle because it almost sounded criminal. While I can laugh at it, others cannot, and many are easily offended. For instance, never say real mother or mother when you are speaking of the child's birth mother. Never ask adoptive parents if the child is theirs (he/she is still their child whether he/she is adopted or biological). Also, don't assume you know the ethnicity of the child. Simply ask the ethnicity, country of origin, or race of the child. Trust me...an adoptive parent would much rather you ask than assume their child is Chinese (when he is really Guatemalan).


It doesn't get less offensive when moving to the autism community, either. While this community, with its special terminology, is new to me, I quickly learned to watch my step. There are words like neurotypical and non-neurotypical. You should never say normal or not normal. Also, there are the ABCs of treatment such as: PT (physical therapy), OT (occupational therapy), ST (speech therapy), and ABA (applied behavior analysis). There is also biomedical treatment (all the stuff we are doing) and the vaccine fence. There are DAN! doctors (Defeat Autism Now), thimerosal (mercury preservative in vaccines), and TACA (talk about curing autism). It just goes on and on!


While I always thought the adoption community was the most sensitive I had seen, I had yet to experience the autism community. These parents are strong-willed, have definite opinions, and will not budge. They are working to recover and protect their children at all costs. They have no time for sympathy, ridiculous comments on their child's behavior, or someones opinion on their chosen course of treatment. They have HOPE on their side and nothing will stand in their way. Adoptive parents and parents of ASD children are some of the best parents I have seen, both striving for happiness for their child.
*Bubba's PPCD eval is tomorrow morning!

A Lack of Established Treatment

"We share parents' frustration over the undefined causes of autism and the lack of an established treatment, but we urge parents to be cautious when choosing treatment options for autism. We recommend scientifically validated treatment. There is no valid scientific evidence that vaccines cause autism, but because of unfounded fears about vaccines, the U.S. is suffering its biggest measles outbreak in a decade." (Oprah.com) As I listened to Oprah read this statement from the American Academy of Pediatrics, while interviewing Jenny McCarthy, I laughed out loud.
Earlier that same day, our pediatrician called to discuss our evaluation from Thoughtful House in Austin. The moment I heard her voice, every muscle in my body stiffened and my palms started to sweat. I could feel the frustration and anger beginning to course through my veins as her skepticism oozed through the phone. She instantly asked how they got "all these levels" from Bubba. I explained that we sent a urine and stool sample, at which point she said "Well, that is more accurate than some other ways." Then, it all started to come. She began to speak hesitantly, yet authoritatively, as she explained that some of the doctor's methods "are out there".
"I do not believe there is any reason for him to take additional supplements when he is receiving a multivitamin. I also do not see any reason to treat him for the flora in his stomach, but, since you have started, he will be fine."
"Will it hurt him?" I asked.
"Extra Vitamin A,D,E, and K could hurt him if it reaches toxic levels," she explained. (None of these is Bubba taking)
"OK...but will it hurt him? Will the B12 injections, the glutathione, the zinc, the fish oil, the magnesium, or the folic acid hurt him? If he has more than he should, will it HURT him?" I asked assertively.
"Well, no. It will not hurt him, but there is no reason for him to have it" she said.
"Well...I see no reason why we shouldn't try it. If the worst that can happen is no change, why not TRY?" I said angrily.
"I understand your frustration, and I know that you are responsible parents, but I must urge you to be cautious when choosing treatment options. Many of these treatments have no scientific basis," explained Dr. By-The-Book.
Now you know why I laughed later that night. It seemed that, if our pediatrician did not write the AAP statement, she read it to me, and this is where my frustration begins. I am not (contrary to the AAP's belief) frustrated over the undefined causes of autism. I am, indeed, frustrated with the fact that the AAP chooses to call "a lack of established treatment" the very treatment that is working for Bubba. I won't even get into the vaccine department (even thought the AAP is aware that the rubella virus has been proven to cause autism, and live viruses are in the MMR vaccine, etc). (I am not anti-vaccine, but something must be done to protect these children).
There are thousands of children out there who are recovering from autism with the help of DAN! doctors (like ours at Thoughtful House) and gluten-free casein-free diets, supplements, hyperbaric chambers, therapies, chelation, and anti-fungal treatments. How can the AAP call this a lack of established treatment when it is working and children are getting better?
This is why our family will continue on our path to a "lack of established treatment". After beginning the GFCF diet, Bubba began to speak in sentences, sing, and count. After the antibiotics and anti-fungal, Bubba can use the potty with ease and even wore big boy underwear to school for the first time on Friday. After beginning the glutathione cream, only last night, he seems more social with Baby (but it seemed to wear off toward the end of the day so we are trying more tonight). After the cream, we will begin the B12 injections and see what happens. We have a total of 15 supplements to try. We will begin each supplement and hope for positive results. If we see positive results, we continue the supplement; if we see nothing we stop.
I just wish the AAP could see the positive results we have already seen. While this treatment may not be established to the generic medical community, it is established in the autism community and the results are powerful.