Mentally Retarded....the term is changing?

Everyone who knows me is aware that I do not like the word, "retard". I especially don't like to hear someone call another person a "retard". I can't stand it when people say, "That is so retarded!". It is rare that I will say anything when an adult swears or uses a hurtful term. I am as guilty as anyone when it comes to having a potty mouth. I see some value in swearing and expressing myself verbally. But this word is one I do not use. This word has been known to make me speak out immediately.

Where does my dislike for the word retarded come from?

My sister had a stroke when she was six years old. Her special needs meant that I grew up around other children with special needs and some were diagnosed as mentally retarded. I remember learning the word "retarded". My sister is not diagnosed as mentally retarded but I do have painful memories of hearing other kids at school saying cruel things like, "Your sister is so retarded and so are you!" And at the same time I remember overhearing conversations about certain children being diagnosed as "mentally retarded".

As a child this confused me. I knew right away that my sister having special needs affected how my sister and me were perceived by others. When I heard children and even adults calling other people retarded in a cruel way I was taken aback. How could someone have a diagnosis of mental retardation and at the same time people were calling people with and without disabilities "retarded"? It was easy to put two and two together and realize that the diagnosis of mentally retarded was being misused. I hated the sound of the word as well. Most of all I hated the pain that word caused others.Today I found out that Maizie's MR Waiver (Mental Retardation Waiver) has been changed to the ID Waiver (Intellectual Disability Waiver). I have not seen this change on any paper work and most case workers and medical professionals use the term MR Waiver.

Even after hating the word "retarded" for years I was surprised to find myself not liking the new term either. It is a big improvement but I still don't like it. Possibly, I will never be pleased with the language surrounding special needs. What would I call it if it was up to me? I have no idea. I do know however that the terms never seem to fit my daughter or anyone I know that is diagnosed as such. And yet, the diagnosis or label is necessary to acquire services.

In this house the word "retarded" is frowned upon. It has been banned. I have walked in on one of the girls looking right at Maizie and saying, "You are so retarded!" I about fell to the floor. Did she have any idea what she was saying? Did she know that she was calling a child with a diagnosis of mental retardation "retarded'? No. She did not.

Maizie has begun to put the terms together as she hears me discussing services on the phone or reads papers I am working on. I watch as she processes how the terms are being thrown around and I can see a look of concern.

I explained to Chris and the girls why I don't appreciate the term being used in this house. And yet, I still hear it every now and then. I have even said "retarded" in bad way on occasion! I was beyond shocked when I did. It is a hurtful word that has permeated our culture despite also being a required diagnosis for many services. Confusing for sure.

Comedies seem to be all about throwing the term in whenever possible. You all know the controversy surrounding "Tropic Thunder". I saw the movie and I loved it despite its use of the word. I know. I'm not necessarily proud of that fact but I love all the Coen Brothers movies.

What is it about this term that is so pervasive in our culture? Other negative terms come and go but this one seems to be stuck.

Knitting and Perfectionism

I wanted a new challenge recently that would be relaxing and keep my hands busy. I decided to try knitting again. Years ago a friend in New Jersey taught me how to knit a blanket. She is from Latvia and knitted a bit different than Americans. I learned her way but when we moved I totally forgot what I was doing. Not to mention the blankey I knitted for Maizie was somewhat of a lopsided mess. She loves it and still uses it despite its unique appearance.

I found this awesome knitting store where you can drop in and learn to knit a scarf. I returned there almost every day the first week to get help fixing my mistakes. I have signed up for a class to learn how to read patterns and my project will be a hat. I am looking forward to this class. Knitting does not come easy to me. I am in no way a natural. Maizie wanted to try as well. She will only knit when we are in the store and the owner is working with her. In a few weeks she has completed about four rows. That is a very slow moving scarf! I am proud of her for trying and keeping an interest.

Sally found out I was learning to knit and was immediately requesting that we go together so she could learn how to knit a scarf. She picked out a beautiful green yarn and within a few minutes her teacher said, "Sally, you are a natural." Sally's biggest challenges are waiting to get help to fix stitches and being too hard on herself when it does not look perfect.Of course if Sally was learning Emma insisted she had to learn as well. Before I knew it I was taking Emma in for her knitting lesson. I forgot to get a picture of Emma knitting because she was a little more difficult to teach. Emma, like me...is not a natural. She had to take several breaks and worked hard to reign in her frustration. When she came home she wanted to knit again but when she realized she could not get it perfect she melted down. I encouraged her to set her knitting aside and wait for another lesson.

We go back into the store soon so the girls can get help fixing their "oops" spots on their scarves. Sally insists she is addicted and all she thinks about is knitting. I hope she keeps working hard at it. Like me Sally finds knitting to be a stress relief. A calming of the mind.

Mimi has not been forgotten. She is always taking my knitting stuff to me and saying,"I want to knit now Marla! Everyone else knits but me!" Oh no. I'm going to take her in soon and have her use some of my yarn to see if she is ready. I remember my friend from Latvia telling me that children there learn to knit when they are three and it is taught in the schools. She believed that knitting early in a child's life helped them to focus, relax and to learn that completing something takes time. She went on to say that children there don't have the challenges of focusing that many American children have. I don't know about that but maybe there are some real benefits to learning a solitary skill like knitting.

All four of the girls are very hard on themselves when they are trying something new. Mimi was coloring last night and began crying a few times because she could not make her "sea monster" drawing look exactly like it did in the book. Emma is even more determined to be perfect within the first few minutes of trying something new. Sally and Maizie are harsh with themselves if they don't meet their very high expectations.

Where does all of this perfectionism come from? Genetics? Learned? I wish the girls would go easier on themselves. Children live best by example. Hmmm....yes, me and Chris are bent towards perfectionism. We know this and are working hard to throw our perfectionist ways aside and become more playful. The best way to learn this is to watch the girls and play right along with them. Easier said than done. Now that life is finally settling down our playful sides are resurfacing slowly.

I am knitting because it is fun and a new challenge for me. I don't want it to be a pressured task. Possibly, the girls will do the same and we will all learn to relax and enjoy the learning process a bit more.

On A Medicaid Paperwork Phone Calling Binge

Or something like that! I have been working hard the last few days to get Maizie's Medicaid Waiver stuff from hell finished (if there is such a thing as being finished), Respite Care Provider has been chosen and will be met with soon and Maizie was squeezed in for a last minute psychiatry appointment. Whew! I have been working on these seemingly simple tasks for weeks...no...months.

I signed and mailed my divorce settlement papers today. I will be divorced in a few weeks! Wahoo! Writing this settlement has taken months. It is well written and takes Maizie's long term needs into account. J is pleased with it and I am as well. Big sigh of relief!

Everything seems to be falling into place. I'm walking on air.

It is amazing how ongoing processes like this can weigh a mom down and cause ongoing burn out. I feel like a new person. This will be the first time that Maizie has qualified for services.

So how did I finally get these services for Maizie?

Lets see...my husband had to take off with another woman (divorce encouraged me to move on a new path with better options), Maizie went through testing to be diagnosed as mentally retarded which qualified her for the mental retardation waiver since child support caused her income to be too high (ridiculous) for services. (Yes, I do hate those words and that diagnosis but I can't change the state's requirements and the terms they use.) Moving to a different state where there are better benefits has been the high light. Ah, what a wonderful process. Sigh.

For the moment the planets are aligning. I feel happy and positive.

Knock on wood.

Halloween Fun!

The girls arrived Friday night. It had been a long while since we saw the girls. Chris had a very rough month with the guard. Which means everyone had a rough month missing Chris. He is a commander and they are getting ready for a deployment to Afghanistan. For the entire month of October he was readying troops for the deployment. He worked from about five a.m. to eleven at night all week and most weekends. It was great to have him home and especially to have the girls with us as well.

As you can see from the photo above Mimi and Maizie missed one another very much. They have grown very close to one another. Every time I turned around Mimi was running up to Maizie and hugging her.Friday we celebrated Sally's tenth birthday. She had been wanting a flamingo marionette. Thankfully the Internet makes it very easy to find all kinds of toys. We gave her a baby and mama flamingo. She loves them and is great at putting on little acts with them. Chris gave her a whole bunch of Lego kits. Sally and Chris worked most of the day Sunday putting together a police station. I think she is collecting an entire town.Saturday we carved pumpkins. Chris looks like he is going in for the kill in the first photo. I love how kids start the carving process and then when it gets really messy and time consuming they run off. I am sure I was the same way as a kid. Before we knew it Chris and I were scraping and carving their four pumpkins and our own as well. We enjoyed a few beers and worked on our own pumpkins. Maizie went a little overboard with the drawing on her pumpkin. Chris tried to wash the ink off. He was able to make her design work without too much ink left behind.Maizie did great emptying hers out this year. Normally she would take out one hand full and run to wash her hands. She managed to allow her hands to be sticky for the whole process which was great.
Here is Maizie with her masterpiece. Emma was less than pleased with the cold gooey mess that was pumpkin carving. Too cute.
Emma wanted hers to look a bit like Frankenstein so we put some carrots on the side. Mimi wanted hers to have ears so I did the same with hers.Emma's is on top of the table. Sally's with the cool eye brows is on the chair. Chris's is to the left of the mum with the lid off. Mimi's is on the bottom right. They look awesome.
Maizie's is on the left. I went a little overboard with mine and added gourd horns, an eye and painted some blood around the mouth. It looked pretty nasty in the day light but in the night it looked great.
I had fun dressing up the girls. Sally looks like a club kid ready to go out. She was a ninja.
Mimi was an adorable witch, Maizie a bat fairy and Emma a vampire.

Mimi was quite pleased with her stash of candies. We left a bowl of candy outside for the kids while we went trick or treating. Once we returned we filled the bowl again. By the end of the night we had to turn kids away because we ran out of candy. Being our first year in this neighborhood I had no idea what kind of turn out we would have. Next year I will have to buy way more candy.After dinner we were all exhausted. The girls settled down to watch a movie while Chris, Mimi and me cuddled in bed and watched some t.v. The adorable lil' witch Mimi was ready to put her broom up and call it a night. She fell asleep in Chris's arms within minutes. So sweet.

Halloween Changes

Halloween has always been Maizie's favorite holiday. Every year Maizie would Trick or Treat with her cousin Daniel and Christian. This will be the first year Maizie and Christian will be apart on Halloween.

I called Christian today, he has yet to talk to me or Maizie on the phone since we moved to Iowa. He refuses because he misses us too much. Christian came here for a week and we had so much fun. I often wish he was home schooled along with Maizie so I could bring him here during the school year too. I miss him terribly. I miss Daniel too but Daniel is a moody teenager and not so easy to please. Daniel, if you read this you know what I mean and you know that I love you dearly.Daniel as a Mr. Potato Head and Maizie the Clown.Daniel the Wizard and Maizie the Lil'Witch. This picture is great because Daniel is looking at the owl he is holding and making it fly. I love the look they both have on their faces. They were both at that age where they believed in magic and it was endearing.This is my favorite costume Maizie has had so far and I love love love this picture.Christian as Spider Man with a bucket on his head and Maizie as a Midnight Fairy. Christian as Ben 10 and Maizie as some other kind of fairy. Guess what Maizie is going to be this year? A Bat Fairy. Another black costume with wings. I notice a pattern here.
Christian with that happy grin that makes me just want to eat him up. Below is Maizie. I remember taking this photo. Maizie was so proud because she had won an award at school that day. She wore it proudly on her sweater. I think the award was for being a line leader but I'm not sure. Maizie was obsessed with being the line leader.

This Halloween is sure to be special with Chris's girls. I will be thinking though of my little guy Christian and I know he will be thinking of me and Maizie.

Maybe....just maybe one of these days Christian will be willing to talk to me on the phone. My divorce and the move has been hard on more than just me and Maizie. Christian and Daniel lost an uncle that they had once looked up to. Christian's best little friend and aunt moved hours away. Adults are often forced to make tough decisions and it is difficult to watch the consequences our little ones face because of our choices. And yet, that is life.

This year Christian is going to be Darth Vader which I think is totally cool. Oh, and this year I'm going to try real hard not to cut myself carving the pumpkins.

Why I am Terrified of The Flu More than Ever

Since I was not blogging most of last Spring most of you did not even know that Maizie became very sick. We were still living at our home in Indiana. J (Maizie's Dad) had left us on Christmas Eve and our lives had been in total upheaval. Maizie was stressed to the max and crying daily missing her Dad.

J had a visit with Maizie one night. He was gone with her about an hour when he had to bring her back due to her going into a bad CVS spell. J brought her in the house and within minutes he left.

Maizie was so sick with this CVS bout. Me and Maizie were in the living room and it was around two in the morning. She was in pain and vomiting from the CVS. I was cleaning up her latest spell when someone began knocking on our door with a force that sent a chill down my spine. I grabbed my cell phone and peeked out the window. Darwin instinctively knew something was not right and began showing his teeth and growling like I have never seen. I was not super scared until the two hundred plus man began hurling himself against our door repeatedly. When he began doing that I felt like I was going to collapse in fear. But then I looked at Maizie. She was sick and totally helpless. Staying calm was top on my list of priorities.

I called the police. Normally they would have me stay on the phone until a police officer arrived. For some reason they cut the call and I waited. And waited. And waited. As we waited the large scary man continued to slam his entire body into the door. Obviously he wanted in. He was yelling, "Bitch! Let me in!" He used some other colorful language that I won't repeat here.

Maizie was panicking and saying, "Mom! What does he want? What is wrong? Is he going to kill us?"

I told her to be calm and sat next to her hugging her as Darwin stood stiff at the door growling like a wolf. I was so proud of him.

Fifteen minutes passed and still no cops. Maizie began heaving and vomiting. I was holding her up while listening to this freak outside scream and hit my door. It felt like he was never going to stop. I called the cops again and they said they were unsure why no cop had arrived.

Suddenly everything was quiet. I looked outside and saw the man pissing on our porch and then jump into a car that had stopped in front of our house. He was gone and I was beyond relieved. Apparently he was "relieved" too. Sigh.

Maizie on the other hand could not relax. She was terrified. Understandably so. As my readers know this was not the first scary incident we had in our beautiful historic neighborhood. Unfortunately, a loser landlord let crack heads deal drugs out of the apartment house that was about three feet from our home. To this day Maizie mentions this incident at least once a week.

I texted Chris in the middle of the night telling him what was going on. Chris said, "Marla. You and Maizie will come to live here with me tomorrow. I will not take no for an answer." I felt such intense relief wash over me. With Chris I always feel safe.

It was probably not the best time to make a six hour trip with Maizie but I felt in the long run it was the best thing for both of us. I was also fed up with the hospitals in our area that did not know the first thing about Maizie's diagnosis yet alone CVS. Granted, at that point she was not needing to visit the hospital so I knew it was pretty safe to drive with her.

My parents were supportive and were beyond helpful in making sure me and Maizie had everything we needed.

The next day we made the six hour drive to Iowa. A new home was waiting for us.

Within days it became evident that Maizie's CVS had been compounded with the flu. She was losing weight rapidly and was unable to keep any food or drink down. A bad fever washed over her and what came next haunts me to this day.
Chris and I watched in horror as Maizie began to have seizure after seizure. She could not walk and was not coherent. In between the seizures she was having CVS spells. Chris carried her everywhere. I am quite certain Chris has never seen a child as sick as Maizie was. I remember saying, "Are you sure you want to sign up for this Chris? It is not easy and this time of year has always been rough." He did not hesitate and told me he loved me and he loved Maizie.

At the time his girls were with us. I packed up Maizie's bag and Chris wrote me directions to The University of Iowa Children's Hospital. I left in the middle of the night once I thought Maizie was okay for the drive.

Once at the hospital they just knew when they saw her. She looked bad. Very pale, her eyes were rolling back in her head and she was listless and dehydrated. They took us right back to a room where Maizie was hooked up immediately to an I.V. for fluids.

I went through Maizie's complete medical history as the Dr. requested. It was exhausting and my memory was taxed considering the hour and my nerves were shot. Of course they wanted to know why we were in Iowa and not Indiana so I had to share that mess of a story too. It sucked.

I was amazed when the doctor finally nodded when I had finished telling her everything and she said, "We are dealing with a very complicated child here. (Granted, I have heard that a million times.) This is what we will do...." I about fell out of the chair. Someone knew what to do?! I had never heard a professional sound so confident.

Normally I hear this, "She has what? Where did you get this diagnosis? " Whenever I heard that I wanted to throttle the emergency room doctor. It always felt like I was being suspected of neglect or abuse or who knows what. Lets just say I was never treated like a mom who had been in the hospital with her daughter many times before for this same situation. I was never before treated like a mom who knew what the hell she was doing to care for her daughter.

Here, I was treated with respect and they knew immediately that Maizie was in trouble. The only mistake they made was sending us home that morning. Within a short time we were right back at the hospital. Maizie went home with pneumonia, CVS that was out of control and the flu. They had not caught the pneumonia. When I took her back she was admitted and there we stayed.

Maizie was so sick that they were not sure if she would survive. I thought I was going to lose it. With everything we had been going through this seemed like more than I could handle. I reminded myself that Maizie has proven herself to be a fighter.

Maizie was set up with a pediatric neurologist, a pediatrician who specialized in difficult special needs cases, a psychologist who specialized in eating issues since Maizie was refusing to eat when she was getting better and a case worker to help us get local services. It was amazing. Much better than Indiana. Night and day difference. Granted, she still does not have services here but that is another post all together.

Finally Maizie did get better and I was able to take her back to our new home with Chris. She slept and slept some more. Recovering from that bout of illness was one of the most difficult struggles I have ever seen Maizie go through. Not only was she incredibly weak but she was mourning the loss of living with her mom and dad as a couple and she missed her Dad.

I was criticized by some for leaving Indiana so soon but I don't regret it. We are now near one of the best hospitals for a child like Maizie and in a school system that takes her health very seriously.

Which brings me back to the flu. I am trying hard not to be paranoid about the flu. Maizie's doctor insisted that everyone in this family have the flu vaccination. Chris, Maizie and me were all vaccinated. The girls are still waiting for more vaccinations to arrive to this area. None of us have had the H1N1 vaccination because it has not been made available here to anyone.

A few weeks ago four children in Maizie's class and one aide went home with the flu. One of these children had a sibling that was diagnosed with the swine flu. At the pediatrician's request the school notified me of half of her class being out sick. I removed Maizie from school and she was placed on Tamiflu for ten days. This week the children in her class were back and well so I sent her back. Thursday her best friend in her class went home with the flu and my mind began to run wild.

It hit me then that I can't keep Maizie in a plastic bubble. I can't keep her safe from all of these germs. The pediatrician tells me I just have to do my best to help her stay healthy. It is a balancing act because I don't want to become super paranoid and make her stay away from public places and I certainly don't want her to miss too much school. She is loving her class and thriving there. Thank you God!

So how do I balance my fear of Maizie catching the flu and it leading to another scary hospitalization? Add in the obsessive news coverage of this seasons flu outbreak and you have me...a very nervous parent of a special needs child.

I know I am not the only parent out there pleading, "Please! Please wash your hands and keep your fingers out of your mouth and off of your face." Did I mention that Maizie's latest anxiety coping method is putting her fingers in her mouth. Argh.

How do you keep from wanting to keep your child home every time you hear of an outbreak? Especially when the doctors advise me to pull her out of school at the first sign of an outbreak. There will be more flu outbreaks at Maizie's school. Obviously.

I wonder how many more times Maizie will be on precautionary doses of Tamiflu?

Breathe Marla. Breathe.

Welcome Baby Sam!

Today my little sister Melissa gave birth to her second child, Samuel Paul. I am so excited for her! He is too cute! Visit Melissa, Tim, Alex and baby Sam at Meljo blog.

Let me Introduce you to...

I love the above quote. I found it fitting considering the amount of changes taking place in my life lately. Today I thought it was time to introduce you to Chris and his three beautiful girls. What a blessing it has been to open my heart to these three precious pumpkins. On the far left is Emma. Emma just turned eight and she keeps me on my toes. I am convinced she will one day be a high power attorney. She has an amazing ability for debate. Usually topics like how the world was made, or why birds fly. Emma takes the more scientific view. I like to make up crazy stories as to why things are as they are. We both love debating together. Emma communicates easily with animals and has grown especially attached to Darwin.

Next to Emma is Sally. Sally will be ten in a few days. Sally is the lover of nature. The one who reminds me to recycle and asks me if I am "being green" when I am throwing out something. Sally loves animals and has a strong need to give back to the world. I see her as the peace maker, the giver and the nurturer. I see myself in Sally. She is my "mush pot" as my mom called me when I was little. In other words, we are both deep feelers, sensitive and loving.Next is little Mimi. She is by far the easiest going child I have ever known. She takes everything in stride. Mimi has an intense love of Sponge Bob. One day she was in the bathroom and I was channel surfing on my television in the other room. I landed on Nickelodeon for just a few seconds. The only sounds on the t.v. were some glub glubs and whirring noises. From the bathroom she yelled, "That is Sponge Bob! Leave it there Marla!" She then went on to recite exactly what was being said on the program. I was amazed. I too love Sponge Bob so Mimi and me hit it off right away. Mimi is a cuddle bug and loves to go to the library. Recently I took Mimi to get glasses and she looks like a little librarian. I could just eat her up she is so sweet.

And finally, there is little miss Maizie. Maizie is not so little anymore. Maizie loves her "step sisters". There is no rule that we have to be married in order for Maizie to call them her "sisters". How else do you explain the close bond these girls have made? Sisters is fitting. That is not to say that the adjustment to having sisters was easy. It was not. Maizie is learning how to share on a whole new level. She loves her sisters fiercely and asks when they will be here daily. The girls have learned a lot about Autism and they can all tell you a bit about Cyclical Vomiting Syndrome. This is my Chris. What can I say...I am totally and completely wild about him. He is book smart and emotionally intelligent, sensitive and stronger physically than anyone I have known. At the pumpkin farm he was so funny. He wanted to bring all the best pumpkins home with us. It was hard for him to leave the awesome pumpkins behind. We had to buy six and that was more than enough!

We have both been through some confusing and rough times in the last few years. I feel fortunate to have found a best friend in Chris. He is supportive of me staying home to be there for Maizie and him. Chris encourages and inspires me artistically. He is the breath of fresh air I did not even know I needed.

He works full time for the Iowa Army National Guard. The military is one of Chris's many passions. I will talk all about my new life with the military in another post. Chris is talented in wood working and loves history. We have lots of fun together. I am trying to beat Chris at Halo. I suck. Totally. When we are not gaming, cuddling or talking we are working on our money pit of a house, but it is our house so we love it. We are all on this new path in life together. It is strange how sometimes we are pushed in new directions never before imagined. At the time we think we will die from the changes. We think that life will forever be dark. Now, I can't imagine my life without Chris and his girls. Like the pumpkin in the quote I have survived because I honestly do not fear change anymore and I have learned how to move with it and sometimes against it. Mostly, I have found joy in embracing and accepting change.

Sleepless Nights on the Spectrum

I love the above picture because it reminds me of the "look" Maizie would give me when it was time for bed. Needless to say, sleeping did not come easy for Maizie or me. I have talked about my struggles with Maizie's lack of sleep before but feel compelled to write about it again tonight.

Me and Maizie are alone together A LOT. I mean, we are alone together A WHOLE LOT. We always have been. During the middle of the night when Maizie could not sleep we would often watch movies. Some of our favorite middle of the night movies were...Dude Where's My Car, How To Lose a Guy in Ten Days and Just Married. Yes, I let her watch all of these movies at the age of four. I remember her drifting off during Dude Where's My Car one night and continuing to crack up, in her sleep during her favorite parts. I have no idea why these became our favorites. There was something calming in watching the same silly movies in the middle of the night.Sometimes we would even bake. We would make muffins or pop corn at two in the morning. I know! It seems crazy but that is how we survived Maizie's intense bouts of insomnia. Granted, before the age of about four her insomnia consisted of non stop wailing and appearing to want to literally crawl out of her own skin. During that time there was no movie watching or cuddling on the couch together. I seriously don't know how we survived that. In fact I think it was so traumatic for both of us that I blocked a lot of it out of my mind. As time went on Maizie would wake and be unable to sleep from about one until four in the morning. She did not cry or seem in pain but she was...how do I say it nicely? WIRED. Totally. Her sensitivity level was very high as well. Eventually she would just collapse somewhere and sleep until about six and then be up for the day. She rarely napped. At the age of eight she began, for the very first time, to sleep soundly and almost all night long. Sleeping through the night has been a dream come true for us both.

This unconventional sleeping schedule has led Maizie and me to do things I notice most families with children don't do. For instance, Maizie and me think nothing of taking off on a school night to see a movie. Sometimes we will see two in one week. We have been known to go to book stores late in the evening to hang out and read in the children's' section for a couple of hours. I remember eating at a chinese restaurant with Maizie at nine o'clock at night. During our homeschooling days our schedule was all kinds of messed up. Granted, Maizie's constant Cyclical Vomiting Syndrome bouts were the main cause of that. If it was nine o'clock at night and Maizie wanted to leave the house...you can be assured we did just that. If she felt good enough to want to go somewhere I certainly was not going to say no.

In a way Maizie's struggle with insomnia has taught me to shake things up a bit and not be so rigid with our schedule. So what if adults look at me like I am the world's worst mom while we are coming out of a movie at eight thirty on a school night. I do realize that Maizie being an only child makes these times much more possible. Having recently expanded our family to include three step sisters some of the time...well, lets just say more than one child changes everything.

Tonight me and Maizie went to see Whip It. The new movie produced by Drew Barrymore and of course she plays one of the cool derby girls in it as well. Maizie loved the movie. I found my thoughts wandering from boredom. At one point I sneezed and my eyes began watering. Maizie leaned over and grabbed my hands saying, "Mom. Are you okay? I am concerned. You are crying."

I told her I was fine and she then said, "You have tears mom. I know you are sad. It's going to be okay." Oh, how I love her.

After spending much of the movie daydreaming about Maizie and our long nights awake together I felt so touched by her concern. To think about where we were just a few years ago and where we are today...it is amazing.

I want all of my blogger friends who are lacking in sleep, staying up late with their child night after night and struggling in so many areas of life to know something very important. In the end it is worth it. You will never look back and regret those long sleepless nights no matter how hard they were. I am happy to say that Maizie sleeps through 'most' nights. She still has bouts of insomnia but now I can set her up watching television and go back to bed. Granted, I never sleep too well because Maizie is now more creative with what she decides to do while up in the middle of the night. Or sometimes her insomnia comes from CVS, in that case I need to be up keeping a close eye on her much of the time. Sigh. At any rate, there is improvement in all areas.

When you are in it relief seems unattainable. I know I believed regular sleep and a sense of normalcy would never be a part of my life. Amazingly enough, you will miss those long nights when it does get easier. At least just a little bit.

Autism, Love & Loss of Pets

I knew I was in for a tear jerker when I opened up the latest issue of Psychology Today and found an excerpt from the new book 'Cowboy and Wills' An autistic boy's greatest love-and loss by Monica Holloway.Pets have been a constant part of my life with Maizie. Not every pet has been a match made in heaven but a few pets have managed to change Maizie's life for the better.

Monica Holloway writes, "When Wills was anxious or sad about something, he confided in Cowboy. Sometimes I'd hear him in his room or the backyard telling Cowboy all his troubles."

Pets are great for children and adults alike but I must agree that when a child with Autism has a special bond with a pet wonderful things happen.

Will's dog Cowboy helped him feel confident when he was around people. His sensory issues were often calmed with Cowboy's presence. My experience with Maizie and Darwin has been the same. Darwin is always there for Maizie and she has been there for him too.Unfortunately, Cowboy developed Lupus at the young age of two. Will's and Cowboy's days together were cut short.

Holloway writes about talking to Will about Cowboy, "It feels horrible, unthinkable, that Cowboy will die, " I said. And then, using Katherine's words, I told him, "It might even feel like you can't live through it, but you will."

I have this feeling that Cowboy and Wills is more than a book about a boy with Autism and his dog. It truly is a love story.

Do you know that overwhelming gut wrenching emotion that is beyond words, the one where you truly believe you can not and will not survive the pain of it? The pain of a broken heart? Or is our heart breaking in order to fit in more love? Breaking to create more space within our hearts than we ever thought was possible?

We do survive that pain. It can make us better or worse. Ultimately, it is our choice.

Recently Chris's daughter Sally lost her pet snake Clay. Sally's pain and tears were intense when we told her Clay went to snake Heaven. She screamed out, "Noooooo! Why? Why?"At first we tried to explain and explain and then we realized nothing we could say would stop her pain. Sally had to feel it.

Holloway said it well when comforting Will, "There was nothing I could say to make this any easier. I had run out of words."

I have worked years to get Maizie to communicate feelings to my liking. To carry herself in a way where she would be more likely to fit in. Yet, is she not more beautiful when she is comforting Darwin or a friend without words? We try to fill every moment with sound, with words and explanations. It is no wonder why children with Autism are so drawn to pets. Pets allow them to be exactly who they are.

I have a lot to learn from Darwin and the guinea pigs. Sometimes the best way to get into Maizie's world is to stop expecting her to be totally into mine. There is a beauty to running out of words. Now the difficult part is letting the words float away when I want so badly to speak them.

Beginning Again...From a New Place and with a New Love

After months of adjusting to my new life...okay...I am still not adjusted, not totally. Starting over in a different place with new people and losing what I thought I had is hard work.

I'm in Iowa. I'm home. My boyfriend Chris and me have been recreating our lives together. I am very fortunate to have found a best friend in Chris and can't wait to introduce you to him.

Catching up with my blogging friends will be great. Thank you for your patience and support. I have not responded to your e-mails and I apologize for that. It is not that I did not want to. Checking out from technology was something I had to do for a time. Balancing the online world with real life has become an important priority for me. Currently I am not on Facebook.

Many of my friends, family and bloggers have went through similar times and face challenges that are much more difficult than what I have been experiencing. And yet, this is my journey and I did what I had to do in order to move forward. My thoughts and prayers have been with you all. I miss the community I found here. Maizie is doing well. So much to write and many pictures to share. Where do I begin? Please comment so I can get back into the swing of bouncing to your blog. I want to catch up!

Signing Out for the Last Time

I thought I wanted to get back into blogging. However, once I began the interest was not there. I have decided to limit my time behind the keyboard.

I want to thank everyone for their support over these last few years. Blogging has taught me so much about mothering, family, disability, Autism and what it truly means to be a part of a supportive network.

If you would like to keep in touch please e-mail me at marlabaltes.hotmail.com. I love you all and will miss you greatly.

I have also limited my use of facebook. I am using that only as a means to keep in contact with my immediate family members. For everyone else I will be going back to the old fashioned method of e-mail and phone calls. Please do not take it personally for those of you that were removed from my facebook account. My life requires more privacy than in the past and I am finding that it works very well.

I wish you and your children all of the best.

Alex Barton's Tie Die Project

Remember when we rallied around Alex Barton and let it be known we would not forget what happened in his elementary classroom? If you are new please read my post on Alex.Alex's mother has started the Tie Dye Project. This unity chain is an expression of passion for the equal rights of all people on the spectrum.

If you are interested in learning more about this project please e-mail Alex's mom at mommyofalex@justiceforalexbarton.com.

Smile! We are teaching our children to be responsible for the unity that they find in each other.

Please visit Justice For Alex Barton

Dog Park Days....Darwin's Big Decision

Dog Park Days is up and running again. My recent post is Darwin's Big Decision for the Day....where to nap next?

This Dog Park Days post is dedicated to Chris who finds almost everything about Darwin very entertaining. Thank you Chris for all that you do for me and for being my very bestest friend.

Soft Clothing for All Children and Sensory Processing Disorder

Director, Jessica Elsas contacted me in regards to having a Blogger Profile on her site Soft Clothing for all Children.

Jessica wrote, "We plan to do weekly profiles of blogs that cover issues related to Autism, Aspergers, Sensory Processing Disorder, Special Needs, Parenting and more. The purpose is twofold--to bring much deserved attention and traffic to blogs that deal with these topics, as well as to create a resource archive on the Soft Blog--for our readers and Google searchers everywhere. We get a lot of traffic from people searching for topics that are not covered comprehensively by us--but they still land on our pages. We hope this archive will direct our readers to blogs and articles that more comprehensively address their queries. For more information on our company and mission, please see http://www.softclothing.net/."

If you are interested in having your blog profiled please write to Jessica at info@softclothing.net.
I told a little about our story with Sensory Processing Disorder last October. Over time Maizie has been able to handle more sensory input but SPD continues to be a challenge for her. All of us have sensory issues but for children like Maizie it is more intense and can slow down life, making it almost unbearable.

Tags on my shirts send me over the edge. I cut most tags off immediately after purchasing an item. Obviously, for many children with SPD it goes beyond the irritating tags. The feel of the fabric, the way it hangs, does the fabric cling or give...there are many factors to consider.

Too many socks, underwear and shirts have been given away since Maizie refused to ever wear them because they, "hurt me". Jeans are the worst. She may agree to a pair in the store and once home curses them for every little stitch.

I am looking forward to seeing the clothing line at Soft for all Children. If you have any tips or links that you find helpful to help your child with SPD please leave them in the comments.