I Want That 'Robot' to Stop Looking At Me!

I am back to good health and catching up on blogs. I feel like I have missed out on so much. It takes a lot of time to get caught up!

We are all a bit on edge here. Worn out and anxiety ridden. The time in the hospital was needed but it was exhausting. We won't have the results until next week! Maizie did fantastic considering all of the blood draws, the noise, and the sensors on her head and chest. I think for her the worst part was the application of the sensors. Tears rolled down her cheeks and she was a trooper but there was pain. For a child who does not like to be touched I can only imagine. Oh, and the hospital food sucked! I can't believe so many people say they have great food. It was nasty. So, in order to get Maizie to eat we had to bring in her 'favorite meals". If we would have relied on hospital food she would still be there.

A few of the sensors came loose and actually burned her forehead in a few places. The EEG guy had to come in and reapply them and rewrap her head. Needless to say this was not Maizie's favorite part of the experience.

The nurses were all very kind. The biggest problem we had was when they put another child in the room with us. It was our last night and Maizie was at the end of her rope. I was at home when Joe told me they moved another patient in. I was not pleased!

Once I arrived I asked to speak to the nurse alone in the hallway. I told her that yes Maizie had been handling everything well but that was because we were able to control the environment of her room. We kept it as quiet as we could when needed. I told her that Maizie either needed to be moved or the new patient needed to be moved. The nurse looked at me like she had heard this speech before.

I was told I had to talk to the head nurse. Yes! I was in the mood for some good ol' advocating. Luckily, I did not have to do much talking since when the nurse came by Maizie was curled up in the fetal position, under the blankets on her bed crying loudly, "I just have to be alone! I just have to be alone! I can't take it!" I made it clear that things would only get worse if we did not move Maizie as quickly as possible. The nurse said, "Of course! We can move her right next door!" Of course we can! But, why when I warned them more than once of her sharing a room did they not just take my word for it? So frustrating!

The nurse said, "Maizie...honey lets get you out of bed and into the new room." Maizie screamed, "No!!!! I can't do it! Leave me alone! I have to be alone here now!" So they left Maizie hiding under the covers as they moved the bed to the other room. It was quite the show. The new or should I say old neighbor in her room was all wide eyed and staring at us like she was very glad to see us moving. It was a good hour before Maizie would come out from under the covers and when she did....whoa! Did I ever get yelled at. Suddenly everything was my fault and I was the worlds worst mother and she wanted me to just go home and leave her there alone! She insisted that her stuffed animals were going to growl at me. She even threw one at me. Maizie was sure that she was big enough to be on her own in the hospital! Ugh. Needless to say I refused to leave.

The next morning Maizie apologized for getting so angry with me. This was the beginning of noticing some changes with her new anti seizure medication. It seemed after every dose Maizie would become irate and full of anger. Was it just that she was going stir crazy or was it the new medication? The seizures were slowing but her moods were becoming irritable and beyond difficult. It felt like we were moving backwards to when Maizie was about four or five and at her worst with handling anger and looking back her seizures were the worst then too. Espeically since no one saw them as seizures.

Well, last night it was all too clear that it was the new medication. Maizie had went to her room angry and for what reason I don't even know. The doctor got us in to see her right away and now we are on to a different medication. Of course we have to start the long process of weaning her off the original medication and add in the new one slowly. If we don't wean her off of the old one the seizures could come back full speed and we would wind up in the hospital again. So, the neurologist has a detailed medication schedule for us to follow. We need to use Excell just to track everything. Argh. I will no doubt dream about medications tonight. God willing this next medication will slow the seizures without the scary agitatied behavior.

In order to get through these next two weeks of weaning the medication and dealing with increased anger and implusitivity problems we headed out to Blockbuster. Now, we have Netflix and have not been to a video store for a couple of years now. So, we were shocked to see that people still pay four to five bucks to rent ONE movie. Why? Why do that when you can get Netflix for $15 bucks a month and see several movies a week?? I just don't get it.

But, out of desperation we paid for one of the confusing as hell monthly membership options just so we can take Maizie in every couple of days to pick out some new movies. Her attention span is not very good, her seizures have decreased but continue so it is still as if we are living with a very sick, very irritable child.

Our mornings are typically spent waiting for the morning seizure....then it is resting time from the seizure...then it is time for a few mood swings followed by an afternoon seizure which is typically followed by more rest time. This leaves time to watch a few movies, maybe do some school work and get in lots of trouble for impulsive behavior like writing on jeans or tying Stella up inside her dog crate and the list goes on. Lord help me! The evenings are her best time...well, they were until this new medication screwed that up too. Bedtime has become a rage filled nightmare. My poor baby. It is very frustrating to deal with her when she is like this and yet I know she can not help it. She is as amazed with most of her behaviors as we are.

So while others are enjoying an upswing with school successes and reaching new milestones (yes!I am thrilled to hear it and can't wait to be there with ya all!). I must say we are on a slippery sliding slope of medication nightmares, seizures that just won't totally go away, regression in all of its forms and this includes Joe and I as we begin to nit pick at one another from being cooped up and feeling a sort of dejavu from several years ago.

The postive part is that we seem to have found a good neurologist who is willing to do whatever it takes to get to the bottom of Maizie's seizures. In time we have to believe that a medication will work and we will be back to going to plays, visiting friends and all the stuff that makes our lives so much fun. Until then, we still do see Maizie as the child who will not give up. She is a fighter. More patient than Joe and I combined, I think.

Here is a picture of the messy looking EEG stuff that went right in front of the bed. At one point

Maizie said, "I want that 'robot' to stop looking at me!!!!!!" (a.k.a. the EEG machine with camera)

Home At Last!

We are home...home at last! I wish I could say that Maizie is doing fantastic but the seizures continue. They have went from about five to six per day to two per day. I am thankful for the reduction. We caught lots of seizure activity on the EEG. It will take a week for the EEG to be read.

Maizie had to be put on I.V. fluids for dehydration again. Since she finally began eating a little today we were allowed to go home. The neurologist began her on a new seizure medication that we are hoping will continue to reduce the seizures. Maizie has been very irritable on the new medication or it could be she is just plain tired of having seizures. But, the irritability seems to occur shortly after she takes her medication.

To top it all off I caught the flu. I began feeling sick today and was nasty sick this evening. So, this post will be boring and short. I have little to no energy.

Hopefully I will wake up tomorrow feeling better and able to share some weekend stories with you all and catch up on blogs.

Video EEG Begins Early and The Mummy!

We took Maizie to the neurologist yesterday and the doctor was able to get Maizie in early to the hospital for the 72 hour video EEG. We were a bit surprised as we were not prepared mentally yet. Luckily, I had all ready purchased some crafts to keep Maizie occupied. She can not leave the immediate bed area except to use the bathroom. I had no idea it would be that restrictive. Lord help us!

Maizie did quite well considering we drove straight to the hospital. She had a difficult time tolerating being touched when they put the sensors on and is obsessing about when it will be taken off. Considering her inability to understand time it is a tough concept to explain. We are going to try and draw up a little calendar to help her.

She had a mild seizure towards the end of having the sensors being put on. I really hope they caught that one! Now, as strange as it sounds...we are praying for seizures while we are there! Without some record of them it is hard to know how to treat them.

Joe and I are taking turns staying with her and expect a few visitors over the weekend. Maizie is such a good sport. She has all ready handed out quite a few stickers to the nurses.

We took our little DVD player and this morning after being woke up at six a.m. for a blood draw (argh!) she has chosen to watch The Mummy. She pointed out to me as I was getting ready to leave a shot of the Mummy with the wrappings on his head. I did not even get that she was comparing her current, "look" to that of the mummies! Oh, my! I will have to call Joe and have him talk to her about that one! This is one of Maizie's favorite movies. She has quite the eccentric taste.

I will keep you all updated. I no doubt will fall behind on the blogs but know that I keep you all in my prayers. Especially those whose children, spouses and some of the bloggers that are going through health struggles right now as well!(you all know who you are:) Miss ya all! Hugs!

Our Morning Seizure Scare

Last night I was trying to fall asleep but just could not reach La La Land. Suddenly, Darwin was standing next to the bed staring at me and pushed his nose onto my head. An intruder? I figured if this was the case Darwin was a worthless guard dog! Does he have to go potty again?!

Finally, I got my lazy butt up out of bed and first checked on Maizie. She had vomited....everywhere. I think Darwin was trying to get me moving to help Maizie. What a good dog! Vomit was all over the bed, dripping down into a container of baby doll clothes, a tote of stuffed animals and all over the floor. Yuck! My poor baby! I got her all cleaned up as she was laying there like a rag doll. My instinct told me it was another abdominal seizure but I was not sure. This flu bug has really made things hard to differentiate.

The next morning when I woke up she was still sound asleep. I took advantage of the time to shower...thank God. We had to go get her Lamictal level drawn as soon as we could so I was running around making sure I was ready.

Finally, she came downstairs and seemed to be doing great. She was happy, took her morning medications and then she began reading a library book about rats to me.

I was listening intently because it was all about people eating rats and it was quite disgusting, therefore very interesting. Then, there was a pause in the reading. I look over and Maizie had the most vacant look on her face that I have ever seen. It was as if she could not look at me or focus on anything. I said, "Maizie! Are you okay?" Maizie said,"Dizzy Mom." The words slurred out very slowly.

I went to where she was sitting and looked at her pupils and asked her if her belly hurt. She said, "I can't see!" Well, that was the kicker. I about freaked.

I called the neurologist and the nurse told me to take her to the ER right away. Easier said than done! She could barely walk yet alone comprehend anything I was saying. I threw on our coats and shoes, grabbed my purse and led her wobbling out to the car.

At the hospital she continued to be non responsive. I kept thinking about my older sister and the stroke she had when she was six years old. Was Maizie having a stroke? Her pupils looked normal but she was not responding even after several minutes. Normally, she is very out of it after a seizure but this was very very different. Everything about this seizure was different.

They got us right back to the room. You could see everyones looks of concerns since she looked so pale, wobbly and her eyes were just empty. Terrifying and heart breaking. I had called my Dad while driving to the hospital and he met us there. Joe has been in Utah all week. I was sobbing when I called my Dad which is totally not like me. I normally hold it all together and then freak out later when I am in the privacy of my own home. Well, not this time. Being up much of the night and dealing with seizure after seizure all week had pushed me over the edge. I could barely answer the nurses questions. I felt embarrassed and did not want to scare Maizie but I could not stop crying! The nurse put me at ease and then once my Dad arrived I was fine.

They put Maizie on an I.V. because she was a little dehydrated. Her heart rate was very high when we arrived and this had the doctor worried. They took labs and they all came back normal. We don't have the Lamictal level back yet though. After about an hour and a half Maizie began to speak and respond appropriately to questions. I was so relieved to see her looking a bit more coherent.

This is the first seizure I have ever taken Maizie to the emergency room for. Maizie was a real trooper. She cooperated for everything and when the doctor told her she was an excellent patient Maizie said, "You are welcome." So sweet. The nurse gave Maizie a stuffed bear that is praying and she was thrilled with that. Later, when we were home and she was getting her energy back she wanted to blog about her experience and typed it herself and even spell checked it and everything. Amazing!

Tomorrow we go to the neurologist in the hopes of getting the Lamictal results back and talking through what has been going on this last week. It is possible that the flu caused her to lose much of her medication increasing her seizures.

Later I asked Maizie what it looked like when she could not see and she said, "The house was moving up and down, up and down." So, I don't think it was that she was 'blind' but that she was very dizzy. The doctor said it was the postictal state that was so scary and intense with this one. I guess so. It had me totally freaked out. Maizie is typically very tired and a little out of it but this was beyond anything I had ever seen before. Seizures are tricky and confusing. No one seems to understand what is going on.

I am so glad we are back at home. I am praying she sleeps all night because I am tired. This week has worn me out. I can't believe we have a three day EEG next week. I don't know where I will get the energy for that.

When we returned home I layed Maizie down on the couch and thought something looked strange about the carpet. Darwin had pulled down the fish food, opened the jar and spread it all around the floor making it look like it had polka dots all over it. I am guessing he enjoyed rolling all over in it considering how it was ground into the floor. He also chewed up another library book. Argh! I thought I had everything picked up but apparently in the rush to leave I forgot a few things. Normally Darwin is quite well behaved. I am sure he sensed something was wrong and acted out. Maizie did stop long enough on the way in to scold Darwin by saying, "You bad bad dog! What will the fish eat now? They might die!" She is such the disciplinarian when it comes to the dogs. Cracks me up.

Joe should be home shortly and I am going to try and take a nice hot bath. Maybe read a chapter of my current book, Zed.

The Bad "Bug" and Mr. Bean Takes A Holiday

Maizie has had the flu. A bizarre flu that appears to come and go. According to the pediatrician it is going around. We have been very lucky in that Maizie has not had an illness like this for over a year. At the same time she is having a harder time due to her seizures which were all ready on the increase.

Now, she is back to having one to two seizures a day along with this supposed flu. If you are one of her loyal blog readers please keep visiting. Possibly, you could dig into her archives. She has some great stuff in there. Currently she is in no mood to blog but she assures me she will do it when she is ready.

Today was a long day. Okay, almost every day since last Friday has been a long day. We are going on day six of this "bug". I am going stir crazy. I actually thought she was over it a few times. Last night she seemed great. That all changed this morning. The pediatrician says this is what they are seeing so I am trying not to worry. For Maizie, he agrees that it may take even longer for her to recover. I called the neurologist and she agreed and added that the seizures are probably on the rise due to losing her medications from throwing up. She wants me to take her in for a medication level tomorrow. Oh, and by the way her MRI came back normal which is good news. I am praying the EEG gives us some very needed answers.

I have been asking Maizie off and on if her belly was hurting or if she was having a head ache. Getting Maizie to admit to pain or describe it is next to impossible. Finally today she said in her most serious tone, "Mom! Don't ask me those words ever again. When I wake up tomorrow you better not say those words! You are an adult. You should know how I feel."

Ugh. She always knows how to put me in my place.

We did get to watch Mr. Bean Takes a Holiday. Maizie loves Mr. Bean. I think Maizie appreciates his unique way of communicating. She often looks at me and says, "Do you know what he is saying?" If I say, "No. What?" She will tell me what he said according to her unique outlook on the movie and it is usually quite cute. I think she understands his movies more than me. There was a scene where Mr. Bean was lip syncing an opera with a kid he was traveling with and Maizie was laughing so hard. I must admit it was quite cute.

Sensory Memories Understood

Chaotic Idealism wrote a post today about 'stress based regression'. I think it is a very important read. We have always considered Maizie as being a child who regresses. Now, after reading her post I see it in a new light. Of course with Maizie's ongoing seizures we do see regression in other forms too that are very concerning for us. But for this post I will focus on the regression that stems from over stimulation, from an environment that is clashing with her needs.

It hits home with something we realized a few weeks ago when we were watching old behavioral video tapes of Maizie. I was appalled to see a few obvious areas of "over stimulation" or sensitivities that Maizie had that we were unable to recognize. I know I should not be too hard on myself but looking back I really wish we would have figured out what was upsetting her and been able to make a few simple changes. I am sure at the time we were making major changes all the time but still....it was really hard for me to watch.
I am amazed and humbled that Maizie was able to tell me exactly what she needed as she watched the video. I was not wanting her to watch the videos. I worried they would upset her or she would view her past differently. She begged me and I gave in. She has been fine since viewing them and taught me many lessons. Of course, keep in mind it would have only been within the last couple of years that she could have watched these videos and communicated with me on what was bothering her. Before that time she would not have had the verbal skills or possibly even the comprehension skills needed.

The first thing we noticed was during her bath time. Maizie was three to four years old in these videos. She would scream from the start of bath time until we finished cleaning her. I asked Maizie if she remembered what was upsetting her so much during the bathing time. Maizie laughed and said, "The water is loud and it feels bad on her body." Whenever Maizie sees herself on video she says things like, "She is sad." or "She is pretty." I know she understands it is her when she was little but she still does not speak of the video as if she is watching herself.

Anyway, when she clearly told me what was wrong with the bath time I about fell to the floor. Duh! What on earth was I thinking back then? Neither Joe nor any professional watching the tape figured it out. We knew the water sensation bugged her but we were oblivious to the noise factor.This also made me realize that she had the hardest time in the bath tub that was large and did her best in a small tub. Her best bath time experiences were when she would beg to bathe but only to play in the water so at those times I never ran the faucet to wash her hair or had to use wash cloths. Now, we use those disposable baby washcloths that are very soft. I know it is not very 'green' but they don't hurt her like regular wash cloths seem too.
Once Maizie pointed out this almost too obvious fact I noticed in the videos that she calmed down almost immediately once we turned off the water. We always kept the water running while washing her hair, therefore causing her to scream and hit at us during the entire procedure. While we watched the video I was horrified at how obvious this was! It was painful for me to watch. I was saying to myself in the video, "Turn off the water and she will relax!" We spent years bathing her in this fashion. All we would have had to do was run the bath water and get everything ready before even bringing her into the bathroom. If we did not want to rinse her hair from the tub water we could have easily filled it from the more quiet sink faucet.

I even noticed that before the bath when she was very upset she would hyper focus and scream about who was going to take her into the bathroom and who would bathe her. She would get very panicky and say, "Mama carry me! Mama do it." Then, during the video I noticed that Joe was the one who was washing her hair and doing all the bathing. Through the entire bath she kept repeating that Mama should have carried her. I really believe this was her way of trying to explain that we were not doing it in a way that was helping her. Had I listened to her I may have carried her in while Joe was getting the tub filled. If she associated Joe with the loud faucet noise it would make sense as to why she was screaming for me to hold her.

I know that looking back can't change what happened then. As Maizie was watching this video and explained why she was so upset I said, "Maizie....I am so very sorry we could not understand what you wanted, what you needed." Maizie smiled and said, "Mama...it's okay. I still love you."

Wow. As Maizie would say when her emotions are getting too strong, "I am melting!"
I also noticed major trouble with transitions during the video. I asked Maizie why she was screaming in the car and refusing to get in the car seat during one of the videos I showed her. She said to me, "The seat hurts." Plain as day! Well, no wonder these major...and I mean huge melt downs stopped once she was able to stop using a car seat. We were pretty much forced to use the car seat however. But, I wonder what we could have done to make it more pleasant for her.

I also asked her in one video why she was so upset with Joe leaving to go to work and me trying to get her in the car. This is what she said, "It is fast. It hurts when it is too fast."

Are you kidding me? I was amazed. I still am amazed. It has taken me a few weeks to process it all. I felt like total crap at having not figured some of these most simple things out. Now, would it have made a big difference if I turned off the faucet and changed the bath time routine? I guess I can't know for sure. Considering how fast Maizie explained the discomfort she felt in the videos......well, I am guessing I would have noticed some improvement.

Now that Maizie is able to verbalize her needs for the most part she is a much calmer and happier child. I do believe that many of her "behavioral" outbursts were her trying to tell us that the way something was happening was not good for her. I do think we were doing our best at the time. However, I will forever think that we should have thought through her routines in a more painstakingly detailed way. Broke down every task into little steps in order to discover what was the breaking point...where could we change something in order to help her feel more comftorable.

Maizie can't always explain why something is not right in her environment. It is sometimes hours or days before we get to the root cause of a serious melt down or fear of something that has taken place. Sometimes there are no answers and we are left wondering what went wrong.

Chaotic Idealism's post reminded me of these times with Maizie. I know looking back that Maizie's "bucket" was full early in the day and we forced her to do more, go more places and see more people. There would be days where Maizie would refuse to leave the house. I would get so upset with her because I wanted her to go to school or to a play date and there she was...huddled in a corner, screaming and holding on for dear life. Friends would think, "How can it be you can't make your four year old get in the car and go to school?" Well, it is true. I could not make her go. Her bucket was overflowing and she had no where to put any new stimulus coming at her. It took me years to respect that about Maizie. I had to change my lifestyle and my expectations of Maizie. Once I did that everything slowly turned for the better.

We still have many many struggles but I look through new eyes when we have them. I ask myself new questions and change our routine, our life style, sometimes even our friends to accommodate. It is never easy but the rewards are wonderful. I wish I would have learned to stop fighting against what Maizie needed way earlier. I wish I would have stopped trying to make her conform to what teachers, friends, doctors or other parents thought she should be like. Or better yet what I should be like in caring for her.

I should have listened to my gut when I thought Maizie had sensory processing disorder but doctors belittled my concerns and led me to seek answers in other directions. Finally, I stopped worrying about getting a diagnosis for sensory issues and read books on the subject and bought products I thought would help. I put myself in her place and tried to see things through her eyes, ears and through her skin. No professional can truly do that, only Joe and I know her that well.

I slowly began to accept that Maizie was a child who needed time alone, quiet, low lighting or none at all, air conditioning, cotton clothing with no tags, small bath tubs, shampooing without tilting the head back, no showers because she feels wobbly, special toothpaste that will not "burn", special foods that do not "stink" or are not of "bad color", fidgety toys, baggy shirts, tight pants, socks that 'feel right', something special from someones house before we leave, transitional objects for the car, deep pressure through hugs, heavy blankets or her squeeze machine, our perfume and scents are best when "Maizie approved", vacuum only when she is happy in her room with the door closed, no new movies or music unless she approves the "newness" of it, cutting her hair when she is ready and willing...not when I want it done, often silence is more rewarding in the long run than listening to "my music" while in the car,smells really can cause melt downs, she truly will learn when her 'brain wants to" (just like she tells me), just because she likes watching something does not mean she wants to participate and that has to be okay, if she says she can't do something it is not necessarily that she is being stubborn...more than likely it is the truth and I need to respect that, just because she can do something one day does not mean she will be able to or want to do it the next, she requires time to determine physical pain and sickness (she needs help knowing when she is sick), changes from one place to the next need to be slow and marked.....and the list goes on and on. What is the most important thing we have discovered and changed? Our expectations. Our attitudes. Our "way" of being. Our energy. Our lifestyle. So much of what we need to change and adjust is not within our daughter, but within ourselves.

Once again, I encourage you to read Reports from a resident Alien at Chaotic Idealism. I continue to learn a great deal from her blog.

Seven Interesting, True or Weird Things About Me!

I was tagged for the same tag by two of my favorite bloggers, Fragile What and Stuff in My Brain. Both blog about their lives. Personal blogs are my favorite.

I have to list seven unique things about myself that people may not know. They should be interesting, weird or true. Then, I tag seven more amazingly wonderful bloggers to do the same.

One: Stuff in My Brain was talking about how he does finger games and it reminded me of a weird thing I do. When I am driving or walking or thinking...okay I guess I do this a lot...I will use my pointer finger to write out words that I see or write out one word that has to do with something I am thinking. I trace the letters in a small fashion in the hopes that no one will notice what I am doing. Joe always notices and finds it kinda funny when I do this. He will ask, "What are you writing?!" Usually, I don't really realize I am doing it. I guess it helps me focus or not focus on something.

Two: I like urban decay. I do appreciate the homes near us that are kept up and nice looking but I also enjoy looking at the ones that are really run down. We have a lot of condemned houses in our neighborhood and I enjoy looking at them and wondering what brought them to their decrepit state. I enjoy driving under bridges that are practically falling apart, we have a few of these in our neighborhood. I like the way the stone is breaking apart from the wall and I see designs within the areas that are falling apart. I love alleys and seeing the backs of houses, mainly janky looking ones. It brings me great joy to drive through ghost towns and see any abandoned buildings. If I could I would be one of those people that breaks into abandoned buildings and photographically documents what they find. I believe they are called Urban Explorers. I have extensive photos of some places I have been but Joe would not allow me to go inside. He is the wise one in the family!
Three: I love wearing my hair in pig tails. I love it even more when Maizie and I both have our hair in pig tails.
Four: I love dry erase boards. If I had my own studio I would have one wall be a giant dry erase board. I think Maizie would like it too.Five: There are some days when I feel homesick for New Jersey. Despite my employment challenges and other mishaps there are certain days where I feel "itchy" and misplaced. It feels like I am not where I am supposed to be, even still. Which, to me...is just plain weird. Or maybe it is just a craving for Bachagaloops Pizza.

Six: Sometimes I miss my sister Melissa so much that it physically hurts.


Seven: If I could take my dog Darwin with me everywhere I go, I would.

Now I will tag seven others. If you have time please do the above tag and have fun with it! Hopefully none of you have all ready done this particular tag! Can't wait to see what you all come up with!

1. Pregnantly Plump

2. Kelly Miller

3. Mejo

4. Why Cats Are Better Than Dogs

5. Autista

6. Grace Under Autism

7. I'm Not Wrong

My Dad Turns 60 and Other Happenings

Today we went to my parents house to celebrate my Dad's 60th birthday. Before we went I said to Maizie, "We are going to Grandma's for Grandpa's birthday party. She said all excited like, "Yes! That means we get to eat cake!" For Maizie it is all about the cake. Today though Joe made home made brownies with home made frosting to take to Dad's and Maizie loved them. I must admit they were very good. The best I have ever had. When we first arrived Maizie was acting quite tired and took a little rest. In a few minutes though she was up and playing with cousin Alex and Christian. Christian was on his Great Aunt Julie's team for Scrabble. He was getting into it. Julie was quite patient with his ongoing need to place letters on the board before a word had been chosen. Too cute! Oh, and just in case you were all wondering...I won Scrabble tonight. Yeah, I rock. Later the kids were quiet so I went down in the basement to search for them. I asked Maizie if she was watching Alex for me and she laughed and said, "No! She is watching me!" That struck me as so funny. Especially since Maizie has been very ornery lately.

Maizie picked up a pile of my mom's (Grandma's) bills and asked her what they were. Grandma said, "Those are bills." Maizie then said, "Oh, I can take those and shred them for you at home if you want me too!" Too funny! Joe bought a paper shredder and Maizie is totally into shredding everything she can get her hands on. She even blogged about it.
Alex was enjoying a big ol' mug of hot chocolate while Grandpa blew out his birthday candles. Alex loves chocolate and ate two helpings of chocolate ice cream and a piece of cake. Yummy! She kept signing 'more' and saying, "More! More!" in between bites. She got her point across. I got to give her a bath tonight which was fun. She was filthy with chocolate.
Alex continued eating and drinking her cocoa at the table long after everyone else had finished. If anything it keeps her quite entertained. I hope everyone is having a nice weekend. Tomorrow we are hoping to go to Target. Yes!

"Dazlious"

The day began normal enough. Maizie slept in which was awesome. We were getting ready to go to my nephews house to babysit him for a few hours when Maizie had a seizure. While she was ready to lay down and sleep afterwards she said real sweet like, "Mama, please just go to Christians and take him a happy meal without me." I told her I felt bad going without her but she was adamant. What a sweetheart.

So, while Joe cared for Maizie I took off for Christian's. Once there I had lots of fun playing Webkinz with him. He was so cute explaining how to play his favorite games.

When I got home Maizie was ready to go to Marie's to play with Christian. We jumped in the car and drove back across town to Marie's house again. I was not thrilled with driving back but Maizie had very little social activity this week and I really wanted her to get to play with Christian.

If anything today reminded me how badly we want some answers to these seizures. One cute thing Maizie said today as she was feeling quite sick during her episode was this, "Mom....I have to tell you the truth. I am sick because last night I was moving back and forth in the tub fast. I saw the bubbles in the tub. I filled the cup with water and I just had to drink it. I am sorry. I just had to do it. That is the truth as to why I am sick." I explained that I doubted she was sick from the bubbles. Of course I had to remind her again that drinking bubble water is against the rules.

Tonight Joe and I watched Snow Cake. This movie was amazing. I want to encourage everyone to watch it with an open mind. Sigourney Weaver plays an Autistic woman named Linda who lives with her neurotypical daughter in WaWa Canada. Joe and I have been to WaWa and eaten at the Chinese restaurant shown briefly in the movie. It was fun for us to remember that little town through a great film.A tragedy befalls Linda's daughter and brings a man into the life of Linda. I was so moved by this movie. I cried and laughed and just really enjoyed it. There are some very touching moments. For much of it I could not help but see some of Maizie in this character. The character Linda has a real gift for language and sees such joy in life. I don't want to tell too much because I don't want to give it away. I could be nit picky about a few things but I am not going to be because over all the movie was just down right "dazlious".

Maizie's MRI

Today was the big ol' MRI. We woke up extra early to be sure that Maizie would not forget and get a glass of water or eat her breakfast. When I went into her room she was putting together a puzzle on her bed. Her only light, a flashlight. The puzzle went a lot smoother once we turned on the bedroom light. I have no idea how long she was up before us but I imagine it had been quite a while.

At the hospital we checked into peds and the nurse insisted on using Emla cream before giving Maizie the I.V. It was a sweet gesture but for Maizie this numbing cream is nothing short of torture. Maizie has impeccable manners when it comes to dealing with the medical professionals so she smiled big and tried to stay positive while waiting for the nurse to remove the cream. Whenever the nurse left the room Maizie would say, "When is she going to take this stuff off? It itches...under there...under my skin...I can't take it." She can take the minor pain of an I.V. or blood draw without any difficulty. But, put some mushy white stuff on her arm with tape and she really has a tough time. Next time we agreed we would refuse the white stuff.There were very few nurses on the floor so our very needed nurse had to leave the room many times to answer the phone and help other patients. Some poor kiddo was screaming while getting a catheter. Maizie said, "I think that child is not feeling well." Most definitely not. Catheters are no fun at all.

Luckily, I was prepared with a wide assortment of "Maizie entertainment". She had been practicing cutting out hearts and brought several with her along with some stickers. I pulled out the markers and she began making a card for the nurse, the anesthesiologist and the techs at the MRI. Too sweet. She also brought a little paper umbrella, the kind you put in drinks... for the nurse. She had seen one at a Japanese restaurant and asked if we could buy some. We found them with the toothpicks at the grocery store. For $1.99 Maizie has had hours of entertainment with about twenty little paper umbrellas. Everywhere we go she carries a bag of these umbrellas and passes them out as little gifts. Everyone loves them.

Finally, it was time for the I.V. and Maizie was her usual brave self. She watched the whole procedure. We were all a bit confused when the blood never went very far into the tube. The nurse kept washing it out or whatever they call it and seemed to feel confident it was in there good. Joe and I had our doubts. The nurse had to ask us if we had ever tried the ketogenic diet with Maizie. Argh. Uhhhh...what's that? I have only read every book known to man about seizures. Of course I know about it! We have actually been told not to bother using this diet with Maizie. By three different doctors. Including the Cleveland Clinic. That is not to say they don't recommend this diet to others. Due to Maizie's autism her food issues are a major block to using this diet and most think it would have little to no effect. Anyway, it just frustrates me when we always get "advice" like that. I know people mean well but after nine years it does get old.

Once down to the MRI Maizie handed out her cards. Everyone seemed quite pleased with their hearts. The doctor put in the white creamy medicine to send Maizie off to la la land and amazingly enough Maizie stayed wide awake. Four people began poking around on her arm feeling for the vein and for hardness. Apparently, the first dose of medicine was put into an abyss within her arm.
Quickly, the anesthesiologist began an I.V. in her other arm and began administering the medicine again. I have never seen an I.V. put in so fast in my life. It amazes me we arrived over an hour early to have the nurse do the I.V. when the doctor was such a pro at it.

Maizie slowly fell asleep. Any parents out there familiar with MRI's know the sleeping potion puts them to sleep so fast it is quite eerie to witness. It also moves through their system very quickly and they don't stay asleep very long at all. Initially however, the child goes from looking around nervously to a limp doll within seconds. The nurses always warn the parents since most are reduced to tears at the sight of their child going immediately out. I had witnessed this with little Christian last summer when he needed an MRI. He fell asleep so quickly in my arms it scared me. I was shocked. In our case, Maizie never falls asleep easily. She fights it. A lot. They had to pull her out of the MRI four times to readminister the sleeping potion.

I felt guilty having her put to sleep since the nurse kept saying to Maizie, "You are so good! So cooperative! So brave! A model patient!" And then she would say to me, "Are you sure you need to put her to sleep? She is so good." I had to remind myself that I know Maizie and sitting still for 30-45 minutes with a large plastic "cage" like thing wrapped around her head would not go well. Sitting in a tiny tube would really set her off too. When I had a scan before my surgery I remember almost freaking out and I am an adult. So, I figured putting her out was the best option. I got over the guilt when they began strapping her body down to the table. She would have never tolerated that awake.

While we were sitting in the waiting room during the MRI a woman went up to the scheduler and said she had an order for an MRI. She handed over the script and the secretary just stared at it. The lady went on to say she needed her scan done today because she did not want to drive the hour back to her home. She had just came from the doctor's office and wanted to get her scan done today. I could not help but over hear and wanted to say, "Are you kidding me? What do you think this is...Great Clips?" The scheduler explained to her that they had to call her insurance company and go through the approval process which would take about twenty four hours. The woman's response was, "Well, can you direct me to a place where they can manage to make a phone call today?" I could see the schedulers skin crawling. I know mine was. This was my waiting room entertainment.

The MRI went well and I am pretty certain it will come back fine. It is the upcoming EEG that I am really hoping and praying we get some answers from. We need to know if she is having any more seizures than the ones we are seeing. Is she having migraines and what medication would be of the most help? Not to mention one to two seizures per week is too many.

Her heart echo came back great. There was one abnormality but it would be very rare for her to have any problems with it. The cardiologist said that she will need to be looked at again in her late teens. So, for now we are quite pleased with those results. Thank you Ed and Marsha!

Two tests down and the EEG to go! Wahoo! Almost done. The EEG will be three days or longer. I am starting to get things together to keep us all busy during those days. We have begun the many "talks" to prepare for the EEG. I can tell she is nervous.

Tween Music Every Day and I Love It!

Today we went to the dentist. Maizie had her teeth cleaned and did fantastic. I am so proud of her. She wears these big ol' sunglasses to keep out the "sun" as she calls it. I can't help put giggle when I see her lean back in the big banana chair with her sunglasses on. The dentist said everything is looking real good, no cavities. Yes! We do have to see an orthodontist by Spring though. I know...you have heard me say I needed to take her to see an orthodontist months ago. I have put it off. I don't want to pay for it and we are dealing with so many other medical issues it seems lower on the totem pole. But, by Spring we definitely have to go since her canine teeth are not coming down and worse they have no where to go even if they did want to come down. At least now I know for sure that her teeth are not the cause of any migraines. So, in the Spring we have to make a plan how to get those little fangs out!

Maizie has a new interest right now. She has always loved listening to music but now she has begun her very own collection. Currently, she is into Hannah Montana and The Cheetah Girls. We agreed to purchase her these two CD's and I can not believe how much she enjoys listening to them. The lyric sheets are her favorite part. In the car she sings along with the music while reading the lyrics. Awesome! She bounces around the house "whisper singing" Hannah's songs. It is so cute. To be honest, I did not think we would reach this developmental milestone for a few more years. Suddenly, here she is...singing princess pop music. I must admit that I am beyond thrilled! It is kinda sad that she is growing up, but hey....she is growing up and showing an interest in a few of the things other girls her age enjoy! Very cool!I was teasing her at dinner tonight...very mildly since she totally does not like being teased. She never has enjoyed teasing since she does not understand its subtleties. I was asking her to explain to me who Hanna Montana is and who Miley Cyrus is. Maizie explained it in only a way Maizie could. It was music to my ears. I wish I could have tape recorded her every word since it was just thrilling to hear her explaining something to me in such detail, confusing detail but detail nonetheless. I pretend I don't get that the alter ego of Miley Cyrus is Hannah Montana and she shakes her head in disgust and says, "Oh...mom...I will try and help you understand." Adorable. I then tried to explain to her that Miley Cyrus's real name is Destiny Hope. Woah there Marla! Slow down! Maizie was not happy when I said that. Okay! Okay!

A DVD came with the Hannah CD and Maizie was watching it with awe. When Miley began performing Maizie said, "Why is everyone gathering around her and being so excited?" The discussion of fame and fans was a very difficult concept to explain. As Maizie watched the crowds jumping up and down yelling I could tell she was thinking, "Why are all those people screaming at her?" We may be a ways off before we could attend a tween music concert. Or like everything else...I may be totally surprised.

Emergency Information I.D.'s

We ordered Maizie her emergency information shoe tag and bracelet. Fiddledee is the company we went with. I had to explain to Maizie in advance what we were ordering and why it was important for her to wear one of these tags.

She still asks me daily about why she has to wear it. I simply tell her that in case of an emergency a doctor or someone trying to help her would know her name, phone numbers, that she is Autistic and on medication for a seizure disorder. Maizie does not seem to understand that she is autistic. She is very familiar with her seizure disorder since it is what slows her down and makes her feel sick. The Autism we tell her is a special part of who she is and that it can make some things more difficult for her, like finding her words. Also, her autism is what gives her special gifts like her incredible reading and spelling ability and her compassion and intuitiveness. Recently, we have had to add in the chromosome disorder. That is really confusing to explain. Not that we dwell on these things but she does need to begin understanding more about herself.

Here is the shoe tag. There is a tiny compartment that holds the information. It came with about three sheets for the information. I simply filled out one sheet with Maizie's name, address, our phone numbers and wrote that she has a Seizure Disorder and Autism. The paper folds up easily and fits right in the snug compartment. The other two sheets will be saved for when her information changes. It was difficult for me to open the tag. Maizie has been unable to pry it open. She tries despite me telling her it is not for any of us to open but for emergency use only. Maizie was quite excited by the look of it on her shoe. Luckily, she likes the hot pink color.

My only complaint would be that the smaller shoe strings do not stay securely on the side latches. So, I had to keep the bracelet part attached to it and strap that onto the shoe. This makes it stick up a bit more than what I like but it works.
This is the I.D. bracelet. It is relatively soft and came in a variety of colors. Maizie picked out the pink camo design. We ordered an extra packet of information papers so when one gets ruined, lost or outdated we can easily switch it. We ordered a child's size and I think it will fit her for quite some time. I am glad I did not get the adult size. I think it would have been too big.
Maizie is not as excited about the bracelet. She has complained it itches her wrist. When she wears long sleeves she seems to like it over the sleeve to stop the itching. I have a feeling if we were not around she would quickly remove this bracelet, considering it irritating therefore rendering it quite useless in an accident or emergency.

It can be worn around the ankle and this may be an option for when she is wearing flip flops in the summer. However, I have a feeling it would be removed also. Eventually we may have to order a necklace which I think she would be more likely to wear for longer periods of time. The company has this one below which I think is awesome. I know Maizie would love it. The information is engraved on the back for up to five lines.

Dinner time turns to "Get the check...quick!"

Tonight Mindy came over and we all went to Mi Pueblo for a yummy and quiet dinner. We failed to notice the sign outside. Can you guess what happened?You will see in the photo below Maizie's look of horror as a Mariachi band began playing near our tables. Of course it is easy to be near our table since the restaurant is super tiny. I was so enjoying having my iPhone to catch this special moment with Maizie. As you see below we have a trumpet, a few violins, one vihuela and a guitarró (I think). All of the men were very good singers. I quite enjoyed the music. I can't say the same for Maizie though. Actually, I think Joe and Mindy were a bit overstimulated with the noise too. The singers were making the loud whistles and high pitched wailing noises. I don't know if that is the best way to describe it. Needless to say, it is very very loud.
Here is a sweet picture of Joe comforting little Miss Maizie. Luckily, we were finishing up our food at this point.
Maizie hid behind Joe until the first song was done. Right after this shot we were up and out of there! Check please!!!!!

Looking Up and My Sister's Weird Tag

Things have been going much better. Maizie had the ECHO of her heart today and she did a great job. She cried just a little bit but I don't think the technician even noticed. She was very proud of herself when we came home and said she did not like the cold "goo".

Maizie has been on a homeschooling work binge. Just goes to show me....once again that Maizie works when she is ready to work. Like she has said to me many times before, "I will do it when my brain wants to do it." We did homeschooling pretty much all day today and yesterday. Except for the nice nap I was able to fit in while she played quietly in her room. Wonderful!

My little sister Melissa tagged me. Melissa has a way of asking lots of strange questions for the fun of it. She finds great joy in the, "Would you rather do this or that?" sort of questions. So.....hold on because some of them are sure to be a tad....ummm....odd. They start out simple enough.

Favorite sound? Waves while sitting on a boat or the beach. Being snuggled in bed when it is super windy, rainy and thundering out. I love listening to storms.

movie? Annie Hall

childhood memory?
playing hide and go seek with my neighborhood friends till late at night

childhood crush? I am assuming this should be a famous person. This is totally embarrassing. Corey Haim

adult crush? Corey Haim. Just kidding. However, I was addicted to the show The Two Coreys.No, seriously.....ummmm.....Leonardo Di Caprio, John Tuturro, Edward Norton


indulgences? Estee Lauder, Clarins, in a nut shell...expensive skin care

biggest irrational fear? I have too many real fears to worry about irrational ones. :) I don't know if it means anything but I always have dreams about drowning. I love swimming so who knows what that means.

Would you rather………eat one small roach or 100 ants? A roach. One bite and it would be done. No problem. Yummy! I would try not to pick one this big though!
compulsively toot in front of others or make loud siren noises with your mouth in the middle of conversations with others without explaining or saying excuse me after either act?
Melissa! Are you trying to tell me something? You know I love making those siren noises!

have ALL your walls painted FUSCIA and baby poop green for five years or live in a tent for three months and have to continue with your daily lives?

If I had to choose it would be the poop green walls. I could not live in a tent for three months. Not with my current life, doing my daily things, not with my child. No way. Never. Unless a natural disaster made it necessary, but that would in no way be my normal daily life.

have your family missing for one year but returned unharmed, healthy, and happy, life returns to normal, or have to go without seeing them for 3 years but you know where they are you just can’t talk to them or see them?
Melissa, you are one weird cookie and that is why I love you so much. Well, this is a terrible question to have to answer. Would I know they would be returned healthy after a year, if I knew it I would go with the first option. If I did not know where they were or if they would be returned I would choose the second option. A year of not knowing would probably kill me.

I am going to pass this tag on to.....Drama Mama at Like A Shark

Obsessing Again....

I can tell when I begin to get down because so many of my posts are about Maizie's health and schooling. Hopefully things will take a turn for the better here soon. We had another morning where Maizie was not feeling well and was bothered by lights and noise. She ended up falling back to sleep about nine thirty and woke up again around eleven thirty. She ate breakfast but spends most of the morning looking pale and limp. Lately, it is just getting really hard to watch every day. I want her to feel good!

Her moods are a bit more explosive here in the last week so that wears on me. She has not been talking about "regular" school today so that was a relief. She was very angry tonight and hid behind the shower curtain for quite a while. I do have a meeting with the special education director of a school on Friday. She has a daughter who is homeschooling her special needs son. I am hoping to get her phone number and set up a time to meet. Apparently they are very active in a homeschool group so I am looking forward to find out which one it is.

I am also going to talk to the director about how they integrate a child like Maizie into the school. I don't have a problem with full inclusion but I do if it means Maizie would spend most of her time in a fourth grade classroom understanding little to nothing. I just don't see how that would be of benefit to her. They seem open to something part time but once again, what would she be doing in the class? It would be one teacher to twenty five students.

If that meeting is a bust then I will probably call Maizie's old school and discuss the possibility of part time schooling there. We may decide it would not be best for Maizie considering her ongoing health struggles. At least at her old school there is a class for special needs children with two teachers and just eight students. Possibly on a part time basis things would go better. I am looking into this on a research basis...possibly for Fall depending on what all happens health wise.

Joe and I decided that the most important thing right now is to find a homeschool group we would like to be a part of and join in with more activities. Someone mentioned Girl Scouts and I am going to call about that too.

Last night I could not sleep at all. I was obsessing over everything we have coming up for Maizie, worrying about her health and her increased moodiness. Do you ever have nights like that where you just keep telling your brain to shut up but it won't. I came back down from trying to sleep to talk about the school issues and frustrations with Joe. That helped and I finally fell asleep.

I have come to one conclusion. I am being very hard on myself. I only recently had a hysterectomy. It takes at least a year to feel totally like your self again, hopefully an improved self minus lots of pain. Our first homeschooling year has been less than normal considering that surgery. Maizie has at least one to two seizures a week and she seems extra tired after they happen making us plan less outings. We have had to cancel a lot of things so I think after a while I gave up.

I am being hard on myself for not doing more with Maizie and then I realized it is only recently that I have had more energy to do more activities and Maizie seems to have less and less energy. I will try and take it one day at a time, realizing that I don't need to get everything going all at once. Finishing all of this testing for Maizie will hopefully give us some answers and options to help her feel better. I want to post about happy things and fun times but I just don't have it in me this week. Argh. Hopefully I will wake up tomorrow and Maizie will be feeling good. We have our Coffee Break with our church tomorrow and I am really hoping we can attend.

Our Neurologist Appointment and Tutoring

Today we visited the new neurologist that specializes in seizure disorders. The appointment went well. I had Maizie's recent work ups form the Cleveland Clinic and her neurologist in Indianapolis. She agrees that Maizie is due for another MRI and a 72 hour or longer EEG study. They will be calling me soon about those. I have been putting the EEG off because of Maizie's inability to cooperate in the past. Hopefully because she is older and calmer now it will all go a bit smoother.

Maizie's recent tests for celiac disease came back negative which is good. The new neurologist said that she would have wanted to order the celiac test too so she was glad our Indy neuro had done that all ready. This neurologist agreed to handle all of Maizie's medication needs so I am beyond thrilled about that. One less doctor visit will make life easier.

She also agrees that Maizie is probably having migraines along with her seizures. She is hoping the EEG will bring us more details in that area. After the exam she wrote a script for physical therapy saying that Maizie has poor muscle tone and seems quite weak for her size and that could be part of why she is easily exhausted. Maizie was in PT a little over a year ago and then "graduated" so I was surprised with how concerned she is. She explained that after a major growth spurt the muscles in children like Maizie often stay the same even though the rest of the body gets bigger making it hard for the body to keep up. God willing insurance will cover PT again.

Another area she wants to look into after the first tests is a PET scan. We were also told to go back to the first neuropsychologist for academic and psychological testing. I will do that after we complete all of these ordered tests. Sometimes insurance refuses to cover anything academic and things get costly. Thursday she has the echo of her heart done. I am looking forward to finally getting that completed. Thank you Marsha!

Maizie did great at tutoring today. The first thing Maizie talked to the tutor about was how she was tired of math and wanted to do something different. The tutor explained that math is the hardest thing for her and so it was important that we all keep working on it. Maizie also told her she wanted to go to a regular school. I thought our tutor was going to fall off her chair when Maizie said that. She praised Maizie for her ability to express her feelings as did I. Maizie had an answer for every example the tutor gave her in regards to how math helps you in life. The tutor explained that knowing how to count money helps for when you have to buy something. Maizie laughed and said, "My Dad takes care of that. He always will." She went on to ask Maizie if she wants to know how to spend her own money and Maizie said, "No one puts change in my cards so I don't have money anymore." After tutoring Maizie seemed to feel better about her abilities. Her tutor always looks pretty exhausted after their hour together.

Homeschool vs. Regular Schooling

Maizie is hyper as all get out tonight. She knows we begin homeschooling tomorrow. Even though we keep a very loose schedule Maizie seems excited and nervous. At the same time her attitude is not the greatest. However, she did insist on going to bed with a pile of worksheets to complete. Maizie is very into learning on her own. Most of the time I feel like we work in an "unschooled" fashion.

We had some discussion today about homeschooling versus "regular" school. Maizie told me there were a few reasons why she does not like "regular" school. This is new for her to communicate. Usually she would only cry about missing her previous teacher. Here is her list.

* I don't like the noise.
* I don't like kids asking me questions and being loud to me.
* I don't like the teacher making me go to the reading table. At the reading table I am there because I am loud and it makes me mad.
* I am loud because the kids talk loud and I talk loud and then I get in trouble.
* I get mad when the teacher makes me write on the chalk board.
* I don't like the noise of the teacher and her mean voice. (I don't think the teacher has a mean voice but it may be interpreted as such by Maizie...we have this same problem at church and with certain friends)

This is the most Maizie has ever told me about what she does not like about school. I asked her if she would like to go to regular school part time and she began to cry and said something like this,"Not the same school I was at before. I have to be the new kid at a school. I will only go if I am in second, third, sixth or tenth grade. I don't want the kids to talk to me and I don't want noise. I want regular school if this can be the deal."

Well, that does not sound too easy to write into an IEP. We talked about how children talk and part of making friends is talking. She went on to say she did not like homeschooling and she did not like regular school either. To top it all off she told me how she does not want to do any more math at tutoring.

Do I regret having this conversation? Yes and no. I am glad she can put her school dislikes into words. This tells me that if and when she is ready to return to regular school she may be able to better communicate her needs, difficulties and work with a teacher to solve problems rather than melting down, running out of the classroom or coming home and melting down for hours. I kind of regret asking because it tells me something is still not right with homeschooling and tutoring. Part of it is she does not like to do work that is difficult for her. Homeschooling is harder because we really know where she needs work and we work in these areas. At school aides often did much of the work for her and she would "fake" her way through assignments.

Now, we may wake up tomorrow and her attitude could be very different. Time will tell. For now homeschooling still seems to be our best option. She has been happier, has fewer seizures and is talking more. We are concerned with some regression in certain areas. I am thinking it would be worse if she was in school though. I guess I have no way of really knowing.

If time goes on and she still talks of wanting to go to "regular" school we may try a couple of hours per day. Soon she would be entering the really tough social years at school. The time when what you wear and how you behave become very important in the eyes of other students. I really can not imagine her coping with those pressures. I want her to feel comfortable keeping that unique "spark" that is Maizie.
As you can see I am sorting out my thoughts on the schooling issue today. I suppose it is natural when most everyone I know is sending the kids back to school tomorrow. For us, it is just another day with an extra bent to learning thrown in.

I will admit that I miss the days where I had more time to complete art work, read, visit friends and have time for myself. And yet, Maizie is so much more enjoyable to be around without public schooling. I don't miss phone calls or lack of phone calls from teachers. I certainly don't miss the routine from hell that was trying to get Maizie up and out for school. If she ever does go back she would only go in the afternoon. The mornings are too difficult for her. Her seizures are almost always in the morning.

God willing we will all wake up tomorrow and feel energetic and ready to live life in a learning way. That seems to be the best way to teach Maizie. Now, if I could just stop worrying about all of this. They say that takes time. It has been one year since we pulled her out of school. Maybe I am having some sort of bizarre anniversary stress.

Oh! We also see a new neurologist tomorrow that is much closer to home and would hopefully replace our child psychiatrist who has "disappeared".
Good luck to all of the kids returning to school, whether it be public, private or homeschooling! Hugs and prayers for all the parents worrying about all of the stresses that go along with special education.

Frontline "The Medicated Child"

Tuesday, January 8th Frontline on PBS is discussing the issue of medicating children with behavioral issues. The show is titled "The Medicated Child". As we all know this is a very controversial subject. Hopefully the show portrays a balanced look at this important issue.

Joe and I have always struggled over the issue of using medication to help Maizie. It has been our experience that medications have helped Maizie in many ways. With her medications her ability to focus is improved, her moods are more balanced and she struggles less with impulsiveness, aggressiveness and assist her with sleeping through the night. And of course the biggest benefit is the slowing of her seizures.

I do not agree that medications are an "easy" way to parent. The outlook that lazy parents medicate their kids so they don't have to deal with them is beyond ridiculous. There is nothing easy about using medications to help your child.

I think it takes a strong, educated and well balanced parent to make the tough choice concerning whether or not to use medication to help their child. Medication alone will not help struggling children. Medication is not for every child with behavioral difficulties. The decision should always be made very carefully.

A Transition Story

I am in awe over the comments from the last post. There are a lot of strong women out there working to help their kids learn the skills so many of us took for granted until we had a child who had to be taught things step by step. Many times our teaching does not seem to be understood. It is not our fault or our child's fault. Much of the time it may feel like we are trying to reinvent the wheel of "parenting techniques". The struggle to find that perfect routine, transitional object, medication, diagnosis and the list goes on. We all have one thing in common. The love for our children. Thank you for sharing. Oh, how I wish I would have known you all when we first adopted Maizie.

Today I was looking through my old journals looking for a time when I wrote about a really difficult time I had with Maizie involving transitions. I found this entry. This entry shows how few tools I had for transitions. Of course, reading over this I now think it would not have mattered. Maizie was so out of control and unable to focus or communicate her needs that most methods did not work. I think more than anything it took time for her to catch up in areas of sensory development and communication methods. A lot of it we just had to "endure" and love her through. Certain medications also helped. I wish I could say times like this ended quickly but they did not. It has only been in the last couple of years that Maizie began sleeping through the night. We always used to say Maizie was like having a baby in a toddler body and then a baby in a preschoolers body. Finally, in the last few years she is catching up...slowly.

I like the dialogue concerning these transitional issues. I hope by sharing this entry those of you who are struggling to care for toddlers or preschoolers feel hope. I understand all of our children are so different.

May 31, 2001

This week has been exhausting. Maizie has another ear infection. I would like to blame all of her behaviors on this ear infection. That is what I have been trying to do since she was born, I suppose. She is still screaming and unable to reason. Does that makes sense? Having the skills to reason at her age? Is that too much to ask?

We were in the small waiting room at the pediatrician's office...again. I did everything to entertain Maizie as we waited. Finally the doctor came in and at first Maizie pays attention to the doctor as if he is a new toy. Of course for her a new toy does not hold interest for too long. Within minutes she is running around the room screaming. She runs out of the room and I leave to bring her back. This happens over and over again. The doctor sits on his little round stool watching. I want to die, disappear...anything.

This is how doctor appointments always go. They are hell and worse, they are numerous. Today it dawned on me that most mothers seem to be able to keep their children within the patients room. I don't hear other children screaming and tearing the rooms apart. What is wrong with me? Worse, what is wrong with Maizie?

I tried to describe all her current ailments. So many I have to keep track on paper. Maizie takes off again screaming, "Damn it! Damn it!' Ugh. How embarrassing. I had to drag her back to the room. I told the doctor how I am really trying hard. I explain that I have read every book on discipline and nothing works. Nothing.

The doctor told me she should be evaluated but to wait a little longer. Maybe it is just the current infections and the stress from being hospitalized for her chest infection. I was on the verge of losing it.

He went on to say that we have no idea what may have been passed down to Maizie. Possibly ADHD or the birth mother may have been an alcoholic. Okay, maybe the ADHD but I know the birth mother was not a drinker. I felt my blood boiling. I just wanted him to tell me where to go for this so called evaluation and send me on my way.

The doctor told me a medication may help calm her. I refused. I don't know why. She is on so many medications all ready. If she could just be healthy for a while before we try that.

The doctor asked me how Joe and I are handling the stress. I immediately told him about all of our discipline experiments. The time outs, the lack of television viewing, the bedtime routine from hell. He cuts me off and says, "Marla...how are you doing? You?"

I began crying and said something like this," I have begun scheduling my life into "breaks" from Maizie. I have put her in day care so I can get sleep. I work two part time jobs so I can be away from her in the evenings. I can't take the abuse. She does better with Joe right now. I have the day, Joe has the evenings. Day care helps me sleep. Kind of."

After my outburst he asked me again about her ability to concentrate. That should not need so much explanation. Just look at her! I wanted to scream at him.

I felt so confused. I told him how she can watch some television and seem focused. She can be cuddly for short bursts and seems happy some of the time. Other times she seems to be in pain and screams and yells for hours. Non stop. It is terrible. He asked about books. Yeah, right.

He tries to convince me that she can focus if it interests her. I tell him that no she can not. I point out her "quirks". How she thrives on a schedule tailored to her every whim. How she needs the lights turned off a certain way. Worse, how she has to turn them off herself and that never even pleases her. If we forget to do something the right way, like put a cup in the "right" place she will cry and yell for hours. I explain the inability to sleep. He does not comment. Just stares at me like I am nuts. He did not tell me where to get the evaluation. I forgot to remind him.

We left the exam room and go to check out. Maizie takes off to see a baby and I turn to watch. She suddenly calms. I jump forward worried she will hit the baby but she does not. She caresses the baby's little head and smiles sweetly. I took it all in because I rarely see her so focused.

Suddenly the answer came to me. Maybe Maizie is the type of child who needs a sibling? That feeling of guilt filled me up...again. For us, another child is no easy task.

Quickly, I came to my senses. I can't handle one. I am a terrible mom. I have no clue what I am doing wrong or why I can't get any real help for my own daughter. I am so tired of people looking at me like I can't control my own kid. Okay, I can't control her. It is true but I do hate it.

Amazingly Maizie did willingly walk to the car but once inside she let loose. She began screaming, "I want to go to the park!" I told her we had to go home. As we entered the busiest part of the street she unbuckles and crawls behind my seat.

I had to pull over. She was curled up in a ball shouting her favorite phrase for the moment,"I want to go to the park! No touch me!"

I always worry I will be turned in for child abuse when this happens. It must look pretty bad. Finally, I convinced her to come out of the car so I could hold her. She crawled out and fell into my arms like a limp doll. She cried as if she has finally had enough of herself and can't take anymore. I buckled her back into the car seat and she starts all over again. This time she screams, "I want ride in trunk!" I did almost laugh at that.

Again, I get her back in the car seat. I did see all the signs at the doctor's office. She kept saying, "Too loud." Was I too loud? Hell, I don't know.

When we got home I tried putting her down for a nap. That did not go well. Finally, I put her in the bed and ran to the door. She grabbed the door and I pried her little fingers from the door and shut it, holding the door knob tight. Not allowing her to leave the room. She clawed at the bottom of the door. I slid down and peered under the crack. I could see her beautiful brown eyes looking back at me. I of course began to cry and she was crying. I watched her fall asleep through the door crack. Both of us miserable. All I wanted at that moment was to open the door and hold her. But, I knew that would not work. She would just scream. Maizie wants to be held and yet she can't tolerate it.

I did not leave the door because I knew the sleep would not last long and if I fell asleep somewhere else she would be loose in the house. I have no bigger fear than the harm she could cause herself if I am not near, watching her every move. I fell asleep on the floor for a few minutes but mainly I just layed there crying and praying for strength.

Nothing in my life is controllable anymore. I feel like a failure. I begin telling myself not to think when my brain goes in this direction. I just need to sleep. In a few hours Joe will be home and I can tell him about today. Get my break.

New Years Eve Fun and Transitional Objects

Happy New Years Day! 2008 is here and I must say I am ready for a new start. Last night we went a few houses down to Janeen and Brian's to hang out with friends. We ate and ate and ate.

The kids enjoyed making a band with all the toy instruments. Chloe on the saxophone and Isabelle on the flute. Maizie played the drums. The other little ones danced.

Maizie and Savonna had fun playing in a tent. Maizie is pretending to talk on a toy phone.

Cindy insisted on me trying hot cocoa with Butter Shots. Oh, my. It was so yummy. What a warm, cozy and relaxing drink. She gave me the rest of her Butter Shots since she had just bought a new bottle. Lucky me!

When it was time to go Maizie began to melt down. She hid in the tent crying, "I can't handle it. I want that peacock feather but Janeen said no." Janeen had a decoration with a bunch of peacock feathers in it. Maizie suddenly insisted that in order to go home she had to have one of these feathers. Sometimes we give in and take the object being requested with the promise of returning it. Other times we manage to change the object.

This has been a common scene since Maizie was a toddler. We call it her "transitional object". It can not be something that is ours...it has to belong to whomever we are visiting. Usually, she will request a snack which is easy enough. It is not so much the snack as it is knowing that it came from the house she does not want to leave.

Last night though we pushed the night too far. Nine o'clock rolled around and I was still enjoying my hot cocoa and chatting with friends. Maizie is usually off to la la land at this point in the night.

Here is how my conversation went with Maizie while she hid in the tent.

Maizie: Mom! I need to talk now!
Marla: What's wrong?
Maizie: I can't go. I can't handle this.
Marla: I will help you but you have to trust me.
Maizie: I have to take a peacock feather home with me! I need it! I can't trust!Marla: Maizie, you may think you need that feather but I promise you it will be okay without one.
Maizie: (screaming and crying a bit) I can't take this. I can't handle it!
Marla: Okay, what about this. How about I get you a snack in a baggie to take home with you?
Maizie: I don't know. I don't know if it will work. I don't know if I can trust you.
Marla: Will you try and get calm while I go get a snack for you.
Maizie: Okay, I will try.

I run to the kitchen for some sort of junk food. Candy would be perfect, it usually works best. I can't find anything. Yes! I grab a bag of marshmallows and put a few in a baggie. Jackpot! Thank you Cindy!

I show Maizie the marshmallows through the tent window and she nods. She opens the tent door and takes the bag. I can see her begin to pull herself together. The goodbyes are hard but she manages a few. Pat is wanting to talk to me about something but Maizie takes off out the front door without waiting for Joe or me. Argh. We have talked to her till we are blue in the face about doing things like that. And yet, I know just getting through that door was a major accomplishment for her. I yell to Pat that I have to go and can't wait another minute. Joe and I head out the door and Maizie is standing on the sidewalk catching snowflakes on her tongue. Whew!

Leaving friends homes, restaurants or stores never used to go this well. I used to warn people ahead of time that we might just disappear without saying goodbye. Many times we would have to run to the car carrying Maizie. As she grew bigger it was not so much a carrying as it appeared like I was dragging her. I always feared someone would think I was trying to hurt her. For a while it was so bad I had her counselor write a letter that I kept with me explaining Maizie's difficulties. Once in the car she would curl up behind the drivers seat and scream for up to an hour at a time. All we could do is wait for it to pass. Luckily, once Maizie began accepting transitional objects leaving has become much easier. Talking through 'social stories' has also been a benefit.

In a way we all have "transitional behavior" when we arrive and leave somewhere special. We greet one another, bring food or special things to show one another. When it is time to leave we hug and say our goodbyes. Sometimes we take left overs home with us and we often talk of meeting up again real soon.

So, it would come as no surprise that for a child like Maizie a more concrete system of coming and going would need to be developed. Of course Maizie's ability to communicate has made this easier. And yet, she is sometimes unable to cope with hugs and goodbyes or the common phrase,'see you soon'. Her understanding of time is such a struggle to her that what are common transitional behaviors to us leave her feeling even more anxiety. Her ability to be totally in the moment in the company of people she loves makes it very difficult for her to accept having to leave their company.

We often had doctors tell us that there is no way Maizie could be autistic because she is too social. Many never seemed to take the time to really understand where Maizie used to be socially and where she is now. As if they expect her to stay one way forever and never develop further.

Once we began looking for our own unique ways of helping Maizie and relied less on "professionals" the changes were amazing. We have gotten many nasty looks for making what may be considered strange requests or we are seen as spoiling Maizie. Most people understand though and some even grab a baggie before we go and gather a little snack for Maizie without us even asking.