Merry Christmas!

Merry Christmas! I hope everyone had a wonderful holiday. This is the time of year when the blogosphere I inhabit seems to almost come to a stand still. Everyone is busy celebrating with family and not on the computer much at all. I am looking forward to some time catching up with everyone when things slow down here.

Christmas vacation has been so nice. It was important for us to soak up all the love and fun this year since next year Chris will be in Afghanistan working. Mimi helped make chocolate chip cookies with her Daddy. Okay, not too helpful really. She just stayed close to the kitchen waiting to lick the cookie dough out of the bowl. I think Mimi asked a million times if she could lick the bowl.Christmas Eve we set out cookies and a beer for Santa. The carrots were for the reindeer. The guinea pigs helped with the carrots and I helped Santa finish the beer. ;)Before bed Chris read Santa Mouse Where are You to the girls. As you can see Mimi was really getting into it. Miraculously enough everyone slept until seven. My sister Marie told me my nephew Christian was up at four. Ugh.Christmas morning Santa left a nice note. The girls were beyond excited. We each took turns playing Santa and passing around gifts. Maizie was thrilled to get a i pod touch from her Dad. She loves it. He etched a nice note to Maizie into the back of the i pod which was quite clever and sweet.I gave Chris a new robe and a DS. Living in a house with five girls he needs a robe! He loves the DS as he is sitting next to me playing Sims City right now while I blog. Very cute.Emma was beyond thrilled to open her own keyboard. I am hoping the girls will practice their piano here as well as at their mom's house. They are quite talented. I just had to get the girls snugglies. Now they will each have a snugglie for movie night instead of carrying around all the blankets in the house. All were beyond thrilled to open their very own DS. For months Maizie and me have been nice enough to let them play our DS's. Maizie and me were happy to have reclaimed our DS's. Chris gave me Scrabble for mine. My favorite gift from Chris is a very thick and cozy white robe. I love it.I think we were in pj's for two days playing, eating and watching the most beautiful snow fall. Sally worked on her Lego train set. All of the girls have been having a blast Picto Chatting. Emma is especially into picto chatting. I finished knitting another hat. Chris advanced in Halo.Mimi has been into playing with her play doh and all things Sponge Bob.

Today we caught up on laundry, cleaned the house and went out to lunch. Chris and me were going stir crazy. I swear the girls would have stayed in their p.j.'s all weekend if we let them. My mom sent them all some adorable new p.j.'s so I guess I can't blame them. It's nice to be cozy!

Build and Grow at Lowe's

Kate, Maizie's assistant bought all of the girls these adorable shirts. Very cute. Taking a photo where they were all smiling was impossible. I took about ten and this is the closest one to all smiles!Saturday mornings Lowe's has a time when all the kids can go and build something for free. It is called Lowe's Build and Grow. Lowe's gives you a great kit, a hammer, apron and goggles. When you complete it they give you a patch that you are supposed to proudly display on your apron. Our kids are not too into the patches, just the making of the project. Here is Sally working hard. She is the most independent when it comes to the projects. While I am stumbling over the directions she is usually saying, "No Marla. Use this piece. See...the directions here." Yup. It is good for me to sit near Sally while helping Mimi. Kate worked with Maizie and Chris helped Emma. I worked with Mimi and Sally helps me. Ha! Mimi was getting a tad wild with the hammer this time. Mimi hit my fingers at least five times. Each time she would collapse into a heap of giggles over my slight injury. Slapstick humor never fails to entertain a five year old.
Maizie and Kate had fun. It was a very loud day at Lowes. I am not sure how many kids were there, maybe thirty. That is a lot of hammering. All the girls handled the noise quite well. At one point Chris and I looked up to see a mom jumping up and down with her fingers in her ears. She was doing what I felt like doing. It was loud. Very loud. Maizie with her finished product. A Pet Treat Keeper. Emma was very proud of hers. Emma made sure to tell everyone, more than once that she finished first! That is more than likely because she had the benefit of Chris helping her. At one point Chris was saying from far across the table, "Marla...Marla...move the wood over once like this." I'm flipping my piece over every which way but the right way. Argh. I'm telling you..it's confusing and I had a lot of cold medication that day. ;)

Kate and Maizie had the most difficulty. Their kit was complete with nail holes that did not line up correctly. The kit is free but we are not talking highest of quality stuff here. The nails typically cut through the wood like butter and pop out with the slightest of movement. It is enough to drive any skilled carpenter over the edge. I'm not complaining though. Kate was determined to help Maizie make hers work and it turned out very nice.

Knitting, Santa & Darwin may have had Cyclical Vomiting Syndrome

I am continuing my knitting frenzy. Maizie says,"Mom...you are addicted to knitting!" Darwin takes advantage of my knitting by getting in extra cuddle time. Hollea, Maizie's respite care worker said when she found me in my knitting meditation mode, "You are knitting again? You are just a Betty home maker aren't you?!" We both laugh knowing I am so not. Too funny. Sally was being cute by wearing Maizie's Build A Bear sweater. It looks quite adorable on Sally. Maybe Sally will help me begin a new fashion trend. Too bad I am pretty weary of knitting anymore Build A Bear sweaters. Sigh. Three more to go. I am going to tweak my pattern. Shake it up a bit.

When I first began knitting I told myself I would not begin another project until I finished the one I was working on. Yeah, that is really not possible. I have fallen in love with the yarn and when I purchase one I get a great thrill from the casting on and the decision of what I will be making with my new find. Granted, my skill level is still limited but I am learning to read patterns and getting a bit braver with each project. Right now I am making my mom a scarf and hat. I finished my hat class. It was awesome. Next I am going to take the sweater class. Mimi had fun riding the carousel at the mall with me and Chris. Are you wondering where the other three girls were? We bravely sent the girls to see New Moon on their own while we putzed around the mall. This is the second movie they have seen without me or Chris. Sally and Emma are well briefed in what to do in case of a "Maizie emergency". Sally is in charge of the Blackberry. The girls get a great thrill from attending a movie on their own. Last Sunday we visited Santa Claus. Maizie is going on twelve but wanted to see Santa. I'm cool with that. She told him she wanted a Teddy Bear. I think that was all she could think of at that moment. I don't remember what else they were discussing but from looking at the photo it looks like they had a nice chat. Mimi was in awe or star struck by Santa Claus. Mimi wanted to know if the sled next to Santa was his real sled, if it worked, who pulled it and if he is the Santa in the coloring books she has seen. Adorable. Santa and Mimi were talking on and on and on and on. When she finally whispered in Santa's ear what she wanted we were able to wrap up their conversation so the other children in line could visit him. I swear that Santa would have talked all day with Mimi. Emma and Sally were way too cool to visit with Santa. Or shy. I'm not sure which. Maizie drew me this picture of her ice skating. I love it. It is interesting that her drawing level has stayed at the level of a five year old. She reads at a sixth grade level but comprehends similar to a first or second grader. For math she is still struggling at a pre school level. Her skills are all over the place. I love children's drawings. I am always asking the girls to draw me pictures.

Maizie posted on her blog a few days ago. A miracle.

Last night was an all nighter. Maizie has been coughing for a few nights but last night was bad. She could not stop and had difficulty catching her breath. Today we went to University of Iowa Family Care Center. Her asthma is flaring up and she has an ear infection. Sounds typical for this time of year. Red flag number one before we are on the road to pneumonia. Argh. She has had more CVS spells as well. Check this out...Darwin may have had Cyclical Vomiting Syndrome. No, not our dog but Darwin...the scientist.

A visit to the neurologist is next. We will be staying home together this week in the hopes of storing up strength and good health for the holidays. I am doing everything I can to keep her out of the hospital this year. Oh! Maizie had her swine H1N1 vaccination finally! Sweet!

Knowing that I have respite tonight is the best. Me and Maizie are cuddling together watching Four Christmases. I love that movie.

Questioning the Diagnosis & Jani on Oprah

This Oprah episode is a repeat but it was new to me today. In fact, I missed the show. My mom called me to tell me about it. A family working hard to help their darling seven year old child named Jani with Childhood Schizophrenia. I looked the show up online and watched all the footage I could find. Jani is in the photo above with her mom and dad.

When Maizie was three she was misdiagnosed with Bipolar Disorder. It was not until she was six or so that Autism was discussed. I believed early on that Maizie was possibly Autistic and Bipolar. The more research I did on children with Bipolar Disorder I began to think that the diagnosis was not fitting for her. The medications Maizie was taking helped with some of her extreme outbursts and inability to sleep but her lack of communication abilities, learning struggles and some of her behaviors kept signaling to me that Bipolar was not it.

We went to many different child psychiatrists and neurologists. Some accused me of diagnosis shopping, whatever that is! What was most important to me was getting an accurate diagnosis for Maizie so that she could be on the correct medications and get the best education she could. Medications that would actually help her rather than cause more difficulties for her. A few of the medications Maizie was on made her hallucinate. I remember a terrible hallucination she had when she was almost four years old.

Maizie was on my lap and I had been trying to calm her down after a long day of screaming and self abuse. Suddenly she had this look of terror come across her face. She pushed her arms straight out and began screaming that a man was trying to stab her. First of all I was stunned because Maizie rarely spoke and when she did she parroted. And then terror struck me. What she was screaming was so real to her that I had to make whoever was trying to stab her go away. I held her close as she kicked and screamed. Nothing I did or said would make it stop. Finally, after a few minutes I could tell whatever she had seen was gone. There were a few other times when Maizie hallucinated. Once she saw dinosaurs in our car next to her. A parent can tell the difference between an imaginative child and a child who honestly sees what they are describing.

I began running over the list of Maizie's medications in my mind once again. Was this hallucination from a medication, from lack of sleep or simply from being Bipolar (her diagnosis at that time)? There is nothing worse than not knowing how to help a child when the symptoms are so overwhelmingly confusing and many of the medications made to help the child can actually cause hallucinations. We had no idea what to do. After three days of Maizie not sleeping and becoming increasingly violent we gave in to hospitalizing her. This was not a good situation. Maizie came home ten times worse than when we admitted her. Once back home we were even more exhausted and confused.

I believe that Maizie was hallucinating because of a lack of sleep and possible medication interactions. Once we were able to get her to sleep again and tweaked her medications I don't think she hallucinated again. However, her aggression was an ongoing issue for years. Now, Maizie is rarely aggressive. I attribute medications to helping her control those outbursts and lots of parental patience and time.

Medications are very controversial in the Bipolar and Autism community. Especially for children. Some people believe medications are the cause and for others they are a miracle. In our case medications have made a huge difference for Maizie.

Reaching a diagnosis that was fitting for Maizie took years. It was not until we focused on the diagnosis of Autism and CVS that Maizie began to show improvement. Her chromosome disorder diagnosis further complicates how she "presents".

Some of the comments left on the Oprah boards in regards to this beautiful little girl Jani frustrate me. People writing that Jani has "spiritual issues" and medications are making Jani's situation worse. Why do people insist on saying such things? I knew a woman once who believed Maizie was seeing spiritual entities in our home and that was why she was unable to sleep and control herself. We did not stay friends for very long.

It is obvious that Jeni's parents are going above and beyond to help their child. I can understand their drive and willingness to sacrifice so much for the sake of Jani. It is heartbreaking to me at the same time. I know the toll it will take on their marriage, friendships and their second child. There are no easy answers. As parents they have to do what is right for their family in this moment.

I imagine they have had lots of advice and most of it they have to push aside. Some good and some that makes you want to scream. A few people in my life back when Maizie was at her most difficult were always encouraging me to put Maizie in a "home". For me and Maizie, that was not an option. And even if I thought that would have suited her situation where are these so called "homes"? Yes, there are group homes in many communities for children. What most people don't know is there are very few and the waiting lists are terribly long. Funding is a huge problem and most communities do not have any options for families such as Jani's. Not to mention some children with certain diagnoses don't fit in a group home setting with other children and are denied. Families are left virtually alone to help their "very complicated child" survive. Friends, doctors and families have no idea the struggling it takes to make it through and most give up on these families because they don't know what to say or how to help.

An accurate diagnosis is important. It always confuses me when people fight diagnosing their child and call it "labeling". Without a diagnosis what happens? Too little. Even starting with an unsure diagnosis like we did is better than no diagnosis. I have found that many doctors are not open to various diagnoses. Many seemed to have their "specialty" and were quick to diagnose Maizie with whatever they supposedly specialized in. Here is a list of diagnoses Maizie has had ADHD, Reactive Attachment Disorder, Oppositional Defiant Disorder, Early Onset Bipolar Disorder, Generalized Anxiety Disorder, Pervasive Developmental Disorder,Obsessive Compulsive Disorder, Depression, Post Traumatic Stress Disorder and Learning Disorders. I am sure there are some I forgot to mention.

Diagnosing is complicated and typically most children have co existing conditions that complicate everything. Most importantly...a parent should follow their gut. If a diagnosis is not fitting keep searching. Watching the footage of Jani it is obvious that her parents have a long struggle ahead of them. I always reminded myself that I was in it for the long haul with Maizie when people would give me unwarranted and sometimes hurtful advice. My heart aches for this family. It sounds like they have an accurate diagnosis and the medical professions to help Jani. Unfortunately, it seems they have very little family and outside support. Our society is much more accepting and willing to give support to families of children with life threatening illnesses such as cancer. Childhood schizophrenia is life threatening and the stigma these families have to fight is all very real.

Respite Care Begins & Christmas Cookies

Respite Care began this week. We are blessed to have Kate and Hollea working with Maizie. They work with Maizie to learn self care skills like steps to showering, tooth brushing and cooking. I can't wait to see the progress Maizie will make with their help.

On their first few visits I hung around the house while they got to know Maizie and started working on a routine. Thursday night I went to see the movie A Serious Man. I had just arrived in the parking lot when Kate texted that Maizie was having a CVS spell. Typically I would have went right back home. I waited to see how Maizie would recover. Once Kate gave me the okay to see the movie I was relieved. Until then, I was a nervous wreck worrying about Maizie and wondering if I should risk spending the money on a movie ticket. The movie was awesome and Kate did a great job helping Maizie recover.

On Saturday Kate helped us frost Christmas cookies. Mimi and Maizie made the frosting with Kate.Mimi and Maizie's favorite part was licking the frosting off the spoons.Frosting cookies is a good exercise in fine motor skills. I frosted and promptly ate at least four cookies. They were so good.

Mimi had a hard time controlling herself with the sugar sprinkles. This is no surprise considering how much sugar she requests on her Cheerios in the morning. Mmmmmm....sugary.Sally made a cute, kissy snowman. Decorating cookies is lots of fun. A big ol' mess but it is worth it.

Holiday Vacation Fun

I have been offline for a couple weeks traveling and visiting family. Decorating our tree was fun. Every picture I took was a blur of activity. The girls enjoyed seeing our Christmas decorations and Chris had some very pretty ones as well. Joining two families is an interesting experience. We have similar traditions which has made everything nice. At the same time it is fun to create new traditions.It was always my Dad's job to put the star on top of the tree. The star Chris has can be plugged in but the cord would not cooperate. Finally, we just hid the cord in the tree. Our star will not be lighting up this year. It looks beautiful unlit too. Chris, Maizie and me took off for Indiana over Thanksgiving break. We had the best, most relaxing vacation. Maizie went to be with her Dad for most of the time. Hanging out with family without the added stress of children running around wanting our attention was awesome. I will add however that Alex, Christian and baby Sam all enjoyed our attention. Every time I turned around Chris or someone was picking up Sam. He is pretty darn cute. Very hard to resist holding a sweet, sleepy baby. Chris, Tim and Daniel played some X Box. We had debated bringing our favorite games but decided not to. Focusing on time with family was a better idea. Alex and Christian missed Maizie but had a lot of fun playing together. Alex was pretty much attached to my hip the entire time. Alex is into singing Disney princess songs. Her voice is adorable. Seeing Christian was the best. He is such a cutie. I was concerned he would give me the cold shoulder since we don't see one another as much but he warmed up to me immediately.
Alex turns four early December so we celebrated her birthday. She loved the sweater I made for her favorite Build A Bear. Her green build a bear is actually one that Maizie made and handed down to Alex. It is a bear that meows. Yup, leave it to Maizie to make a bear that meows. I finished a bear sweater for Maizie last night and now I am starting Emma's. I let Alex play with Maizie's DS. She figured it out immediately and within seconds no one could get her attention. Melissa was less than pleased but I bet Alex will be asking for a DS soon.For Christmas we gave Christian and Alex snugglies. Alex is running around above with her snugglie. The snugglies were a hit. Very soft and cozy.Melissa took pictures for me while I held Sam. I don't know what Melissa was doing but they are all "artistically blurred". Every single photo she took. At first I thought I had lost my sense of sight but then I remembered Melissa was taking pictures. Too funny. I love them just the same.Rudy liked Christian's snugglie too.