Reflections

I began blogging on Monday February 5th, 2007. This will be my 225th post since then! I can't believe it. I was not really sure if I would stick to it and enjoy it but I have really fallen in love with blogging.

I have one friend who said that blogging is a way for people to make their insignificant lives seem significant to themselves. Something like that. Needless to say, I was not impressed and a little hurt by that comment.

Blogging and reading blogs has opened up a whole new world of support, understanding and friendship that I have never been able to experience before. I love reading about all of the children similar to Maizie. I gain ideas and inspiration. Much more so than any counselor or therapist has given me in years. Since blogging I have been able to stop my personal counseling. I used to go mainly to talk about Maizie. I know it drove my counselor nuts and he was always asking me to talk more about myself but I told him that was not what I needed. Lets face it, many of our friends just don't want to hear about what we are going through all the time. I understand that so I paid someone to listen.

Before I blogged I journaled. I have filled many notebooks since we adopted Maizie. Oh, how I wish I would have been blogging back then. People would be in awe at the progress Maizie has made.

I remember writing in my journal with it resting on the kitchen counter. Maizie was four. Tears rolling down my face. Maizie standing behind me, screaming and crying, hitting my thighs over and over again. She had not been sleeping and therefore neither had I. I would just stand there and write what Maizie was doing while it was happening. I needed this break in order to try and help her move past whatever she was struggling with. Most of the time understanding what she needed was impossible. Often, the only respite I had was during this time of writing. I could "write away" her screams. Make it seem as if I was outside of my current world, observing. Sometimes ideas would come to me as I wrote and I would turn around to my very sad, very sick child with a renewed strength. With writing came a power and a feeling of peace amidst Maizie's pain. Writing and prayer often worked together. In a way writing is very much like praying, a working out of issues. Laying it all out for God to wrestle with when I think I can't handle anything more.

This is a picture of Maizie at about age four. No one would have guessed she was struggling by looking at most of the photos. Her main words were, "I like horses." and she screamed most of the day, found it difficult to sleep and was abusive to herself and others. Yup, progress has been made.
In this past year I have written about many happy and wonderful times. There have been some struggles too. We had a new diagnosis for Maizie. This brought a sigh of relief knowing that some of the most revered professionals saw what we saw and want to help Maizie feel healthy and happier. It also brought much confusion considering she is the only child we have found with this particular disorder. Once again, we felt alone and had no idea what to do. The doctor said Maizie still fits the diagnosis of Autism and we agree. This is where we find most of our support and ideas.
For this next year I would like to say I have some great resolutions but I only have the same goals I have yet to complete from last year. Many of them involve Maizie's care. She needs to see the cardiologist. We see a new neurologist that is closer to our home next week and are praying she will handle all of Maizie's medication needs. We will possibly return to the Cleveland Clinic to further investigate why Maizie's seizures are not slowing down. A lot of the same.
My resolution is to do all of these things with grace and love. To enjoy my family, to live life so that I can look back and be proud and feel peace. I also have hope that this new year will bring less pain for myself physically since my surgery.

We have a few goals that we continue to work towards. A bigger house will be needed. Maizie is growing up and needs more space of her own. The dogs need a big yard for running. I am not sure but I think we are itching to live in the country this time. Homeschooling will continue for now since we feel it has improved and enriched our lives more than we ever dreamed possible.

To everyone I wish a New Year full of love, learning, joy and peace. Thank you for your support, comments and for sharing your lives with me.

Joe wanted to pick out his favorite blog post from the year and this is the one he chose. He was pretty upset no one left any comments on it. Oh, well. Check it out if you have time.

Little Miss Maizie and Conversations

Today Maizie has been quite full of energy. The kind of energy that has no direction. The kind that can send me over the edge if I am not careful. At last she is in bed and drifting off to la la land.

Today my mom picked me and Maizie up for lunch. She brought along our little friend Caroline. Caroline is six years old. We all enjoyed a nice lunch at our favorite place. They gave Maizie and Caroline balloons. Joe noticed a misspelling on the balloon. One more reason why we love that place.

Once home we all took off for the grocery store where we ran into Joe's aunt Marcia. We had fun talking in the do it yourself grocery lane. Maizie loves and I mean loves to be the cashier and scan all of the items. I must say she is quite good at it. It was nice catching up with Marcia. Maizie loves Marcia and gave her a big hug before we left.

On the way to the car she brought up a discussion she has began many times this week. She keeps wondering why she does not remember certain people when she was a "baby". I try to explain that we can't remember everything that happens when we are babies. Some memories stay and some go. In Maizie's mind being a "baby" means any age younger than her current age of ten. Maizie always gets sad and says, "But, I miss them mama." It is a conversation that I am sure will continue to become more complicated as she creates new questions to understand her past and relationships with others. Possibly some of the confusion stems from moving so much, her adoption, her memory issues and confusion of time... I don't know.

The other day Maizie and I were driving when Maizie said, "Mom...I think God is watching out for me." I asked her how she knows.

Maizie said, "I can't see it. I just feel it."

Little moments like this are amazing to me. Out of nowhere Maizie has these insights and I feel so amazingly lucky that she is sharing them with me. As we enter the "tween" years I wonder how her ways of communication will change. Will she be as open and introspective with me? I hope so.

Here is a cute little note she left me on my i phone. When I first saw it I thought, "Lordy! I am totally losing it! This note to myself makes no sense at all."

Here it is...

Wpa-psiltkip
True blue
Foo

The Water Horse

Today Maizie and I went to see The Water Horse. She had been insisting we go. After Alvin and the Chipmunks I was not looking forward to any movie even remotely child like.
I was very surprised by this film. The previews do not do it justice. The special effects were well done and the story line was captivating. There were some strong subjects, such as the loss of the little boy's father during war, mild war imagery and there are a few moments where the "monster" looks very real and menacing. None of this seemed to bother Maizie a bit.

At one point she leaned over and said, "Your eyes are wet mama." This means she thinks I am crying. She was right. The story was a tad touching and I cried just a tiny bit! Maizie did not cry at all. It is rare for her to cry during a movie. The last movie she cried in was Lassie. It was a scene where the dog is looking out over a vast array of hills and then looks back at the little boy and runs off. Maizie sobbed. So, I sobbed. I am so glad we were pretty much tear free during this movie.

When the Water Horse was just a baby he/she reminded me of our dog Stella. The sounds the horse made and the behaviors were so similar. It was very cute and ugly all at the same time. Just like our little Stella.

I just saw another preview for The Water Horse. The preview makes it look like a romping comedy. It is quite the serious movie. I hate it when previews lead you astray like that. Luckily, in my case it ended up being better than the cheesy preview.

Maizie's Idea for My Memory Loss

There is an annoying infomercial that Maizie insisted I needed to watch. Maizie typically fast forwards the commercials but she made a point to show me this one a few minutes ago.

It was for a rather homely black purse that resembles a fanny pack. She told me she was going to get me the purse for mother's day or my birthday. She insisted I needed it soon. I told her I just got a new purse for Christmas from my Dad.

"No! Keep watching!" Maizie squeals. The commercial went on to show the free gift included with the purse. A small handheld message recorder. The commercial shows the woman looking in the fridge and naming all the foods she needs to buy into the recorder. At the store she takes out her handy dandy message recorder from her fanny pack like purse. She nods her head while listening as if to say, "Eureka! That is what I am here for! Butter!"

I look at Maizie stunned. "You think I need that recorder?" Maizie smiles real big and then gets all serious like , "Yes! You have to get it before you forget to get it! That way you will always buy the foods I eat."

I sigh.

The joys of....food jags. Maizie is currently onto another food jag. If she does not see what she considers to be a large quantity of that particular food item in our cupboards she will begin telling me to go to the store. Many times the moment I stock up on a particular food it seems with a few days she will refuse it. Many of the foods she prefers for very long periods of time will be refused due to textural issues or smells that seemingly come out of nowhere. But, to her these smells and textures that bother her are very real so we respect it and move on. If she has a seizure after eating something she will blame the seizure on eating that particular food item. She does have her days where she will eat a well rounded meal but the meal has to be her "favorite". If a color is off, a new seasoning added or it feels funny to her it may be months before she will try the food again. Meal planning around here can be frustrating and a lesson in patience.

Or does she want to buy me this recorder because she is realizing my ongoing post surgery "brain fog" is not getting any better? Could it be little Miss Maizie is trying to help me adapt to my memory loss? Is she trying to provide me with a tool to assist me through this transition? What a sweetie. I am so proud of her.

Blah! Blah! Blah! Whine! Whine! Whine!

Today I had the joy of popping close to 100 balloons in Maizie's room. She had worked hard on her balloon store. She wrote something on almost every balloon. I wish I could have taken a picture of all the words but the balloons kept spinning around from all of the static. I was sweating like crazy trying to get the arranged. Joe really wanted a picture of them. These two shots are for you Joe!
Instead of Spring Cleaning we usually do after the holidays cleaning and organizing. Nothing makes me feel like I need to get rid of stuff like getting a bunch of new stuff. Especially when we live in this very tiny abode.

I want to write more. I want to read every ones blogs today. However, I am totally exhausted. My back is killing me. Earlier today I cleaned up my sister's house, put away her kids' gifts and then took her to Target. I was happy to help out but Target was the crowd scene from Ben-Hur. The news crew was there taping people shopping. Lovely. At one point I saw them taping right where we were walking so we took off down an aisle. After about an hour of Target my face looked like the little blue balloon face Maizie drew in the picture above.

Hopefully I will sleep well tonight. I have been having the night sweats from hell. Boy, don't I sound like a cry baby! I will just end this post right now rather than go on and on whining.

Merry Christmas!

Merry Christmas! Maizie woke me up this morning saying, "Mom....mom....Santa came!" When I came to I said, "Did you notice anything else different about this morning?" She smiled real big and said, "Balloons!" She was pretty happy with her room full of balloons. Tonight she made a 'balloon store' and was writing words for various emotions on each balloon. Everything from happy, sad to mad. She then put a sign on her door that said, 'Balloon Store Open Today'. Sometimes the simple and cheap surprises are the best kind.

When Maizie saw Santa she had asked for one thing...the Holiday Barbie. As you can see by her smile she was pretty thrilled Santa remembered. Later she said this, "See Daddy I told you I don't have to "hope". Joe asked what she meant and she said, "I don't have to hope for the Barbie because Santa remembered!" I wonder how long she will continue believing in Santa. There have been a few times I thought Maizie knew we were really Santa. I think she may know and just keeps playing along. Time will tell.

Darwin and Stella were so cute watching Maizie open presents today. You can see some pictures of them here. Be sure and check out Wordless Wednesday of Stella! Maizie and I dressed her up real cute like today. This afternoon we went to my parent's house for dinner. We had such a great time. My little sister Melissa gave the ugly glass cat to my older sister Marie. It is an ongoing tradition to write something special on the cat and pass it on every couple of years. An ongoing cheesy gift of sorts.I love the picture of Mom with Maizie below. Very sweet. My mom gave me the Lewis Carroll Alice's Adventures in Wonderland and Through the Looking-Glass books. They have the original art work in them and are just beautiful. I am so crazy about them. They were printed in 1946. Very cool.


Little Maizie had fun smelling every perfume at Von Maur before deciding to get me my favorite Lolita Lempicka. It smells awesome.

Joe is sleeping in his new comfy chair. He said his most favorite gift was from me. Two cards. Each identical. I bought the same card twice! So, I wrote something special in both of them. An example of my ongoing, post surgery, "brain fog".

Now tomorrow we get back in the swing of things again. I am relieved and yet I always feel a little sad. I hope everyone had a wonderful day today. Merry Christmas!

Maizie was Ten All Day Today!

Tonight we had some friends over for Christmas Eve. We had planned to fill Maizie's room with balloons the night before her birthday but Christian was sleeping on the floor and we figured he would not have appreciated being covered with balloons.

What are friends for? To help you blow up close to one hundred balloons! Pat and I got to laughing a few times and kept spitting out the balloons. The dogs are now officially desensitized to balloons.

We had to haul them all upstairs so we put them on a large blanket, folded in the corners and headed up the stairs. Once in Maizie's room Joe and I let go of one corner and you could hear a "swoosh" sound as the balloons fell to the floor. At one point Maizie woke up and I quickly leaned forward, blocking her view and said, "Oh...go back to sleep sweetie...we are just folding up this blanket." Amazingly enough she just nodded and rolled over and fell right to sleep! Whew! That was lucky!

Now we just have to pray that no balloons pop in the middle of the night. That would be bad. We wondered if this would scare Maizie in some way but all agreed she is wild about balloons and will probably get a kick out of it! I hope we are right!

Right before bed Maizie said, "I can't believe I was ten all day today!" Too cute!

Cookies, Church and Medical I.D.

Last night we decided to continue our sugar cookie Christmas tradition. Christian enjoyed helping Joe push the roller. I think the kids enjoyed mixing up the colors the best. Give them some white frosting and food coloring and I think they would be entertained for hours!


This morning at church my nephew Daniel performed a trombone solo. He was so nervous. It did not help that like a typical thirteen year old he forgot his sheet music and Grandpa had to drive all the way back to their house to get it. Once he began playing though he did very well. I hope that he continues to volunteer to play. It made church much more exciting!

Remember how we were trying to get Maizie to sit through a service, or even better just sit in the room for a few minutes? She kept telling us, "I will do it when I am ten!" Well, today she officially turned ten and she sat through the service! I am still in a state of shock.

Maizie did great except for when Pastor Peter got a little animated and she leaned over and said, "I don't like him yelling! I gotta get outta here!" Maizie and I sat outside for just a few minutes and then we went back in for Daniel's closing song. Even still, this is huge progress! I so enjoyed sitting next to her!

On the way home Maizie was filling out a worksheet in a Hello Kitty journal. It asked for her address and phone number. I said, "Maizie...you try and remember. I think you know it!" We have been working on it for almost two years now! She had a couple of the numbers reversed and needed me to sound out the start of the street name. Possibly, on another day she would have been able to come up with the info correctly? I would like to think so. Add in major stress and I doubt she would remember her full name. The other day when she had a blood test the nurse said, "What is your full name honey?" I waited...and waited. Finally Maizie said, "Marie". Ahhhhhh!

What do you do for children who just can't seem to memorize their personal information? We used to have a medical I.D. bracelet we purchased from Lauren's Hope. It was very stylish and had all the important information on it. Maizie hated it. She did not like the feel of the bracelet. Money well spent. Argh. This site has newer ideas than when we bought from them a few years ago so maybe we will try putting it on a tennis shoe or the velcro ones. Maizie seems interested so that is a good start.

I am sure there is some obvious thing I could be doing in this area but I just can't think of anything other than these tags.

Autistic Boy's Christmas Light Spectacular!

We were watching CNN today when we saw a segment on a boy in San Diego about Maizie's age. His name is Brandon Schimka. The photo above was taken from an article on the family you can read HERE.

Brandon and his father create a spectacular light display during the Christmas holiday. The photos they showed looked amazing!

I love that the father and son work on this together, a mega project! Very inspiring! Brandon is fascinated with lights. Maizie is too. She is always asking why we don't have any lights up like our friends and neighbors down the street. I am sure if she was able to visit Brandon's amazing display we would never hear the end of it.

This is another positive example of an autistic child and his family doing something to reach out to others. What a great way to send a message and learn together.

Changes Bring Sensitivity Training

This week Maizie and I blew off school work. Today we spent most of the day playing with Chloe. I took some great pictures of Boomer with my I Phone you can see HERE.

Maizie is a ball of nervous energy. Too many new things coming into the house, gifts being purchased and excitement for Santa. With her inability to understand the passing of time she is having difficulty understanding when Christmas will be here. She wants to have the Christmas get togethers right now!

We also used Craigs List to get our old couch and chair out of the house! What a great experience that was. Joe took the photos, placed the ad and within seven hours it was gone! There were seven others interested that Joe had to turn away! Amazing.

A replacement will be delivered soon! I can not wait.

Do you think Maizie is excited about this upgrade in furniture? No! She is a nervous wreck. I have been preparing her for the old furniture to leave and the new furniture to arrive. I found pictures of the exact furniture on the net and this only seemed to increase her anxiety. She began to cry and clutch on to our old couch as if it was a security blanket.

Possibly the Christmas season was not a good time to make this change? But, what can I say...we found a good deal and we went for it.

I expect once the furniture is delivered she will be pleased. It may be tough though since her usual sitting spot is on the corner of the couch. It is bound to feel different, smell different (it is leather and not super old and stinky :) , and it will certainly look different. Her senses will be on overload.

Tonight at bedtime she became even more upset. Her anxiety was at an all-time high requiring extra cuddle time.

Considering the many times we have relocated our home I am sure you can imagine the stress she has had to endure. I would like to say we spent our life protecting her from these changes and refused to move, lived in the same house since she was born and never left the state. Well, I can't say that. We have lived in five different homes since she was born, once in a different state all together. She has switched schools even more than that since we were always looking for that perfect match for her, the school of our dreams. Most of our moves were in order to be in a better school district in order to receive better services. I can't say that ever worked out as planned.

Life is full of changes. Joe and I are said to be people who sometimes crave and seek out change. I don't know if I agree with this since many of our changes were due to trying to meet the needs of our daughter. This does not make sense to people who may not understand the complex decisions that go into schooling issues for special needs kids, jobs that force endless travel and a town where there are few options. We don't seek out change so much as it continually forces it's wonderful self upon us.

Now, new furniture? This is the change we bring on all by ourselves. I get excited by it and then remember why I had put it off for so long in the first place. Never did I think I would spend so much time preparing my child for new furniture. Even other people's homes become a source of anxiety where change is concerned. Maizie won't let on while we are there but once home she will melt down. It may take us hours to discover the cause.

Joe says Maizie's sensitivities teach us about empathy, gentleness and seeing things from another person's perspective. Very true. Joe is a quiet guy but when he does talk he says really important things. You just gotta love that.

Advocating With Your School: My Top Eleven Tips!

I have been reading many posts concerning schooling issues. We currently homeschool Maizie. We began homeschooling almost one year ago this Christmas.

However, before homeschooling I was a major advocate for getting services for special needs children. I loved advocating with other families to help their children secure one to one aides and other services. In some situations we had to build a case proving that the child had special needs in the first place.

I would not have been able to advocate or enjoy advocacy without the help from a wonderful book. I am sure some of you have this book and I hope you found it as helpful as I did! I have bought about six copies of this book because whenever someone borrowed it they never returned it! They relied on it so much they usually asked to keep it.

The book is From Emotions to Advocacy by Pam and Pete Wright. I went to two of their conferences which were excellent. I will say that if you read and use the book it will give you as much information as any conference will. They have a great website too.Our local League for the Blind and Disabled also offers advocacy classes. Many communities offer these but not many parents are told about them. Schools will certainly be the last to share this information with you. You have to call around and seek them out. I found them very helpful. The people were all very kind and were more than willing to give advice.

Most states in the U.S. have people who volunteer to advocate with a family. This is often helpful since we all tend to be more emotional when it comes to our own child. I did not have an advocate help me but I did have my sister who is also very knowledgeable assist me. At my more stressful meetings Maizie's tutor often attended with me. This helped more than I can express. It was very powerful to have an expert who worked one on one with my child over several years discuss her abilities with the teachers and other staff.

When I first began advocating for Maizie I was often overly emotional and would get angry or upset easily. Through reading the above book, taking classes and talking to other parents I quickly learned better approaches to communicating with Maizie's school. I also learned how to be more relaxed, less emotional and more confident in making requests and seeing that they are followed through with.

When me moved to New Jersey I stopped advocating for other families. A major move was all I could handle. Learning a new states system and advocating for Maizie was enough. When we returned to Indiana we had to move to a different school district from where we were previously and I had to start all over again. I became so exhausted! The new school district had fewer resources and Maizie's anxiety was sky rocketing. Eventually we chose to remove Maizie from public school and homeschool. This certainly was not my first choice but until Maizie is better able to cope with outside stimulus it seemed like our best option.

So, why am I going on and on about this. I guess it is my advocacy obsession taking over. I want to list out ten of the most important things I learned in my years of advocating for Maizie and other families.

1. Put everything in writing!

Write down phone conversations you have with teachers and date them. Save all e mails. Write all requests in a formal letter. If you call to discuss a concern, follow up with a written letter stating what was discussed. If you don't have it in writing it never happened!

2. Keep all writing non emotional and non judging. State the facts and what you would like to see happen and encourage a compromise. Keep the letter to one page in length. Don't point blame and don't ever send an angry letter. Write a heated one and then rip it up if you have to. Write a professional letter once you have calmed down. Always say thank you and how you appreciate the school and their hard work in the letter. Pointing out specific areas where you have been pleased is even better. There is a whole lot to be said for kindness in dealing with schools.

3. If you can find a way to make a great idea the schools idea than go for it! Teachers and schools love to think they have all the great ideas. Whenever a teacher or staff person does something great write a note of thank you. Be positive!

4. Keep an organized binder of your child's medical records, one for testing and one binder for school advocating stuff for each school year. Amazingly enough I would fill one two inch binder every school year. I have a huge filing cabinet full of them. It makes it so easy to point to the facts when you are at IEP meetings. Get copies of all IEP's, testing, etc. Don't leave an IEP until you have the copies! Once again, this goes back to if it is "not in writing it never happened". Keeping records is also important if your child regresses. Proving regression is very difficult with no records! Keep examples of your child's work too!

5. When dealing with medical professionals request letters of diagnosis and be specific with how you want or need them to be written. In our district without a very specific diagnosis we found it much harder to get services. If a doctor who is respected requests certain modifications it can be very helpful.

6. Don't ask for too much at once or for things that are just not reasonable. Do a lot of thinking and studying before you ask for the big ticket needs like one to one aides. All your ducks need to be in a row for this one. Especially if you have a child that can come across with lots of strong skills like mine. Know the laws in your state.

7. There is nothing that beats actual observation in the classroom. How can you advocate for your child if you have never witnessed what the entire school day is like? How can you solve transition problems or figure out what is setting your child off if you are not there for long stretches of time. It is practically impossible unless you have an extremely intuitive teacher who knows your child almost as well as you do! Observe once to twice a week for an hour or two at a stretch. Consider the first few times wasted since you will no doubt be a disruption to how your child normally behaves. If it is impossible to observe without your child becoming too excited or unable to move along normally ask someone familiar with your child to observe for you.

8. As you observe take extensive notes. Observations and facts are the best. I did this similar to how a school psychologist might. Breaking it down into three or five minute increments. You will be totally amazed what you will discover and the ideas you will be able to come up with to assist your child. Keep these notes private and save them.

9. Drop in unannounced and ask to observe. This was difficult for me to do but so necessary. I found out many of Maizie's services were not being completed. PT and OT were never started half way into the school year and I was led to believe it was happening! You would be amazed. Also, Maizie would have melt downs on certain days and we could not figure out why. After observing I was way more likely to figure out why. And at the same time you will discover great things about your child's school and the staff that works with them. Hopefully, all will be well and you will know more about how your child interacts at school for when problems occur.

10. Be nice. Be generous and smile! The staff and teachers are under so much stress. The last thing they need is a bossy, grumpy, accusing parent watching them. I would go so far as to say only observe if you can go in looking at your child in a 'studying' way. You are observing like a detective to figure out how to solve difficulties in your child's day. Not to blame or accuse or make a teacher miserable. Make it so the teacher enjoys your visits. Now, in some cases this may not be possible. Try as hard as you can. Smile! A lot!!!!!

11. Get private testing. Don't rely on the school's testing alone. Ask around and find out who provides the best educational testing. This provides lots of power in negotiating needs. Also, study the testing results.

I hope this is a helpful list. I am sure much of it most of the moms here have figured out. Many of these are covered thoroughly in the From Emotions to Advocacy book.

I have read almost every advocacy book and these were my favorites. In my opinion they are the must haves if your child is special needs and in school. From Emotions to AdvocacyPam and Pete Wright

Special Educators Complete Guide to 109 Diagnostic Tests
by Roger Pierangelo, Ph.D. and George Giuliani, Psy.D.(This book is somewhat outdated but still helpful in talking intelligently about your child's testing.)

Special Education LawPam and Pete Wright

Wrights Law: IDEA 2004
Pam and Pete Wright

Ransom Notes Campaign Ends!

Well, I tried to be wordless all day but just have to share the news. The Ransom Ad campaign has been stopped! I first heard about this from Autism Vox. I am copying the letter posted on the NYU website.

Thank you to everyone who signed the petition and took time to learn about this campaign and make your opinion known.

What do you think about the letter from Dr. Koplewicz? I do think it is interesting that there is continual focus on children. It seems as if people forget that there are autistic adults and they too shared their valuable opinions. I could go on about a few other things I don't care for in the letter but I don't want to be a downer.

Nonetheless, I am glad the campaign has ended. It feels good to speak out and know that things will be moving in a different direction as a result. Now, I am praying that direction is a positive one.

I am showing one of the ads after the letter so we can get one last look at it. I am so glad I will not see these in the Midwest as I am driving Maizie around town! Does this mean the ones in New York will be removed? Cheers to the Autism Hub and the hard work so many people put into stopping this campaign.


From Dr. Harold Koplewicz on the NYU Child Study Center’s website:
When we launched our "Ransom Notes" public awareness campaign two weeks ago, our goal was to call attention to the millions of children with untreated psychiatric and learning disorders. We wanted a campaign that would grab people’s attention, break through the clutter, and serve as a wake up call to what we believe is America’s last silent public health crisis. We felt something dramatic was needed to call attention to the dire outlook for children with untreated disorders: higher risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment.

The campaign succeeded in getting people’s attention and sparking dialogue, but much of the debate centered on the ads instead of the issues. We’ve received thousands of calls and letters from parents, mental health professionals, educators, advocates, and concerned third parties, all of whom are passionate about helping children. While many people praised the campaign and urged us to stay the course, others were troubled by it.

Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site http://www.aboutourkids.org/.

Sincerely,
Harold S. Koplewicz, M.D.Founder and Director, New York University Child Study Center

Wordless Wednesday Merry Christmas Edition

Enchanted Learning

We joined Enchanted Learning. This website is a huge help to our homeschooling. Maizie loves to do crafts and worksheets. She insists on taking workbooks in the car, to restaurants and into bed with her! So much so that I have been spending a lot of money on workbooks. Worse, the workbooks have to be continually tweaked since her skill levels are all across the grade levels.

I was hesitant to join the site. I wondered if a membership would truly offer more than the sample worksheets we tried. Maizie has not been disappointed. There is a huge variety of printable crafts, language, geography, math, foreign language (not too into this yet),artists, biomes, inventors and labeling worksheets. I have only mentioned a few of the subjects! The site continually adds new worksheets.

For a year the cost is only $20.00. That is way less than I have been dishing out for workbooks on a monthly basis.

Random Acts of Kindness

Maizie and I signed up for the Bloggers Unite Random Acts of Kindness. We did not plan anything ahead of time but decided to just go about our day and see what random acts we could come up with. Once we were focused on looking for opportunities they seemed to present themselves wherever we went.

Of course considering the weather and Maizie's lack of willingness to walk on snow or ice our options were somewhat limited.

This morning we were pretty much stuck at home waiting for our new counter top to be delivered. Joe and I worked together last night emptying out cupboards and removing the old counter. My parents gave us their old cast iron sink. I love it! Our kitchen sure looks warmer with this new counter and sink. Next we need to install wood flooring. Wahoo. Joe managed to get everything done with no major injuries or cursing. We were gone running errands during most of the work so maybe there was cursing? The world may never know.

By mid morning Maizie and I bundled up and made our way to the library. Everything was pretty well shoveled but Maizie began repeating this phrase wherever we walked, "I'm scared. I'm scared." She holds on to me and acts like we are climbing Mount Everest every time we have snow or ice to walk over. Maizie's sense of balance has always been way off kilter.

I had a few of books on hold. Maizie loves to find our books on hold and put the books in our bin. Next, we move on to see if there are any decent movies to check out. Maizie found a few and was trying to put them in our bin with her mittens on. She began laughing and laughing since she could not grip the movies and kept dropping them.

After that we move on to the children's' book section. Maizie often refuses to pick out the books herself but does enjoy reading whatever I put in the bin. Today she said, "I do not want any books today." I stood there not knowing what to think. I said, "Why?" Maizie said, "I just don't. Please don't ask me again." Okay. We checked out and were on our way.

At Mc Donalds Maizie and I talked about doing our first random act of kindness. I wanted to do something very random. Which, to me meant doing something for someone I did not know and whom I would get no acknowledgment from. So, after we payed for our order we payed for the woman's order behind us.

I explained to Maizie what we were going to do and why. She seemed very confused by this action. When I ask her about it now she thinks I paid the woman who handed us the happy meal and that there is no way I could have paid for another person's meal. I explained to her over and over that I was paying for the ladies meal in the car directly behind us. Maizie kept saying, "No...you paid the lady at the window for MY happy meal and that is it!" I have tried several different ways to explain what we did and Maizie just does not get it. In fact, she gets a bit hostile about it. Oh, well...it was a random act of kindness and I must say that for me it was a total rush. Her meal was not an expensive one but when I glanced back in the mirror and saw the cashier refusing her money I felt a wave of excitement rush over me. I have never done this particular act of kindness before. It was so much fun!

Our next errand was to the post office to mail a letter to our sponsor child in Bolivia. Maizie has been writing her letters for a few years now and we always send something special at Christmas time. I forgot that it is the week before Christmas...the worst time to go to the post office. The line was ghastly. There was a new machine there where you could purchase stamps on your own. About four people were waiting to use it in comparison to the twenty five or so people in the long line. Maizie and I waited patiently despite there being no room to breathe. I thought for sure Maizie would panic but she did well.

Finally, it was our turn. We purchased our two books of stamps and stepped aside to put them on our letter to Marcela. A man was in line behind us. The woman helping with the new machine said, "Sir, what do you need to purchase." He said, "I just need two stamps. Nothing more." I saw his face drop as she said, "I am sorry. You can only purchase books of stamps here. You will need to go to that line over there." She pointed to the line from hell and I thought he was going to cry.

I saw our chance. "Sir. Please take these two stamps." He was thrilled and handed me a dollar to cover them. I said, "No. Our treat today." The guy laughed and said, "Nope. Take the dollar and buy your little girl some ice cream." Before I knew it he had set the dollar bill on the table and was gone. The random act of kindness was refused and somehow reversed. Maizie was totally into this scene and wanted me to repeat what happened several more times before reaching home.

Our final stop was to buy Joe a Chai Latte at Starbucks. This was Maizie's idea of an act of kindness for Daddy. Joe was thrilled with his yummy snack. As soon as we entered the kitchen Maizie said, "Tell him what happened at the post office!" I repeated the story again while Maizie was all grins.

Who knows what the rest of the day will bring. I am sure more opportunities will present themselves to us as the day goes on. I would like to think I am a person who looks for the opportunity to be kind often. I typically think the best acts are those you do in secret but in the spirit of this blogging event I had to share a few. Today is teaching me that there are certainly times when I am probably tuned out to things I could be doing to bring a little kindness to someone else's day. And in doing so I am truly feeling the kindness bouncing right back at me. I love it. Maizie says she has some random acts of kindness planned for me. I can't wait!

Christmas Memories

I was tagged by Mother of Many at Autism-A Blog on the Spectrum.

"When people say 'Christmas' you immediately think..." I can't wait for Christmas!

"Favourite Christmas memory..."Bringing Maizie home from the hospital on Christmas Eve! Even though her adoption was very difficult this night was special.

"Favourite Christmas song/carol..."Let It Snow! I enjoy being snow bound, eating popcorn and all that lovey stuff.

"Favourite Christmas movie..." The Bells of Saint Mary "Favourite Christmas character..." Mr. Magoo "Favourite Christmas ornament/object..." This nun that belonged to my Grandmother Mercedes Fauchier.
"Plans for this Christmas..." This year we will go to church, have a few friends over for Christmas Eve, eat lots of food and play games. The next morning we will open presents from Santa and then go to my parent's house for dinner. We try to keep it low key.

"Is Christmas your favourite holiday?" I do love Christmas but I think I like my birthday more.

I am going to tagMelissa (maybe this will get her back in the mood to blog:)

Maizie

Dakota Blue Eyes

Angie

Happy Birthday Maizie!

Today we celebrated Maizie's 10th birthday. We always have the party early due to the excessive stimulation that comes with the month of December. Most of Maizie's friends have birthdays in December and there is the overwhelming energy that is Christmas.

Check out the beautiful cake our friend Cindy made! She is so talented. How does she do it? They are also very yummy yummy!

Maizie's actual birthday is on December 23rd. We are going to borrow a great idea from Demetrius's Dad at My Autistic Boy and Other Adventures in Fatherhood. The night before Maizie's birthday we will beg all of our friends to come over and help us blow up balloons. Then, we will fill her room with about a hundred balloons. Jerry blew all of the balloons up himself. I guess if we can't get any friends to come over we will do the same! But, wow...I can't imagine the work involved. When Maizie wakes up in the morning hopefully she will be quite excited to see her room transformed. Maizie loves balloons so I think she will totally love it. Here is a picture of Maya, Jerry's daughter waking up to her balloon surprise! She looks so happy!

Maizie did a few "firsts" today. She actually allowed Mindy to tie a bandanna around her eyes for "pin the heart on the lovers" game and then she actually played it. With all the parties we have been to Maizie always refused to play games like this. Maybe being in her own home helped. Joe and I were both surprised and glanced at one another knowingly. Very cool. She also stood up in front of all the kids and did a dance while playing a DVD game. I was amazed! Such an increase in confidence! I love it!

The kids all gathered around Maizie to open gifts. No tantrums or anything. It went great. I love the picture below because they are all making such unique faces.
After all of the birthday games, lots of food, cake and most importantly Mikes Hard Lemonades....we all took off in the pre blizzard weather to Mi Pueblo. This was kinda pitiful since almost all of us ate there last night too. Oh, well. It is always yummy. Savonna, Maizie and Christian had a great time. Look at those smiles! Of course what goes up must come down.
Once back home all was well...for a little while. Maizie seemed to be doing pretty good playing with her new toys and decompressing from the long long day. However, when bedtime rolled around she melted down. I guess most children would at that point. Maizie was so tired and ready for bed but she insisted she was hungry. This is a common theme when she just needs to crawl in bed and sleep. Instead she wrapped herself up tightly in her new High School Musical blanket and curled up in a corner saying, "I just need to sit here!" She was right. After a while she said real quiet like, "Mom...Please come here so I can talk to you." A long hug with some comforting deep pressure applied and up to bed we went.

Believe it or not we had no intention of having a birthday party this year. I don't think it is all that cool to have a birthday party every year, but Maizie likes routine and this seems to be part of what she considers, "necessary". We were planing just a very tiny family gathering. Maizie began planning the party on her own. She made lists for guests, what we needed to buy, games and told us it had to be a High School Musical theme. We ignored her for quite some time. Eventually she taped the lists next to the computer desk and insisted they not be removed. Before long it was clear that we she was planning a birthday party and we had better step up and get busy. Maizie knows what she wants and that is one thing I love about her. I am not saying she gets anything she asks for...but when she puts most of the work into planning something how do we say no?

Please visit Maizie's blog and view her High School Musical Birthday pictures. Let her know you stopped by! She will be thrilled. I am hoping she will add dialogue tomorrow. It may take her a day or two to recover from today. She dictates best when she is full of energy.

Sign The Petition and Stop NYU from Spreading Stigma

Many of you who visit my blog are all ready well aware of the new ad campaign claiming that children like my lovely Maizie are being held captive and will be looking forward to a future that will only get worse. These ads are insulting and I pray my daughter never lays eyes on them.

Please take the time to sign the petition HERE against this negative and fear based ad campaign.

This morning there was an article in the New York Times. I am pleased to see that Kristina Chew, PhD. of Autism Vox is quoted.

I ask all of my family and friends to take a little time to read about this campaign and sign the petition in the hopes of stopping this campaign. You can find more information at the blog Whose Planet Is It Anyway. The ads I have here were created to take a stand against NYU Child Study Center ad campaign . Bev at Asperger Square 8 is allowing us to use them to spread the word.

Newport Aquarium

Our goal for today was to visit the Newport Aquarium in Kentucky. I knew right away that Maizie was not doing well. She was walking around as if all the lights were daggers in her eyes. Looking hunched over and wobbly. I knew a seizure was more than likely on its way.

The plan was to visit the aquarium and then drive back to our home from there. Just before we were ready to leave Maizie said her belly hurt. Now, it could have been potty time or a seizure coming on. I was praying for potty. No such luck. Maizie had a seizure and within minutes had to lay down to sleep.
After about thirty minutes she woke up and we were ready to go again. Maizie kept repeating that she wanted to go and just did not seem "aware" of what we were doing. She had a second seizure and I led her back to the couch for a second sleepy time.

I think maybe she woke up too soon after the first one and was not ready to go. Maybe that brought on the second one. I have never seen her have two in a row like that before. Too bad we could have not had our neurology appointment this week.

After sleeping for two hours we got ready again. Maizie seemed more alert and said she was feeling better. No more hunching over or squinting her eyes from the lights.

Maizie loved the aquarium. Melissa and I did too! Melissa had taken Alex to day care today so we could enjoy the experience toddler free.

Maizie took her time to read many of the descriptions of the fish. She was very thorough. She loved being able to touch the small sharks. Anything she could touch she did! Very cool!

Maizie managed to name the spider crab and shoe horse crab from her own memory. I was so proud. I did not even know she had ever seen a spider crab.

At one point she said, "Mom. I think that turtle was adopted by that one. See, the Mama and the little baby one." Very sweet. The last exhibit was penguins. You sit in a stadium like area where you view the penguins through a large glass wall. Along the bottom of the wall there was a vent. Maizie read the sign, "CAUTION! No standing or sitting!" She made a little sigh and a laugh and then said, "Well, that sign makes no sense!" Melissa and I busted out laughing. I explained to her that it meant you could not sit on the vent but that we could sit on the bleachers. It freaked her out anyway and we had to move on.

Our day started off slow and Maizie is so tired tonight. By tired I mean hyper. God willing we will be able to leave early in the morning. She is very pleased with the trip to the aquarium. If you want to see more photos check out her blog HERE. Please stop by Maizie's blog if you have the time and leave a comment. She worked so hard on this post. I am really proud of her!

Bobolate! Anthropolgie! Noiseless!

Here is a picture of my niece Alex crawling through this big tube we gave her for Christmas. She loves it. Melissa and I thought about trying it out but we could just picture ourselves becoming stuck.

Alex loves hot chocolate. She enjoys drinking it with a big soup spoon or the good ol' fashioned way. Either way....she makes one heck of a mess. After wards she burped and said, "I urp bobolate." So cute!

We finally left the house today! We had enjoyed a nice walk yesterday when it was freakishly warm here. Of course today the rain is back and it is cold again. Did I ever mention how much I think Indiana weather sucks. I know. We could have had the ice storms. I am thankful that missed us.

Anway, we went to my favorite store. I have only ever shopped at Anthropolgie online so when Melissa told me they had a store nearby in Ohio I was thrilled. With Alex and Maizie in tow however our shopping time was very limited. Maizie did a great job trying to keep Alex entertained but after about fifteen minutes Alex was causing a scene. That is what two year olds live for. Maizie said, "Melissa....everyone kept looking at us in that store! They were looking at us because of Alex." Very perceptive!
Tonight Melissa and I left the girls with Tim and headed to Target. I must say the Target here was not that great. Very small with very few clearance areas. Oh, well. I still managed to spend too much money. It was lots of fun wandering the aisles with my sister. She is trying to talk us into moving to Guilford. I just don't think I could do it. Where we live now we are close to everything. Right in the middle of the city. It is beautiful here. Very quiet. I have not heard any sirens or hooting and hollering since we have been here.

Have you ever been somewhere so quiet and you are not used to it. It kinda makes your ears feel funny. When I try and fall asleep I am like, "Where are the cars zooming by? No excitement! No freaky people walking around at all hours of the day and night." I just can't sleep as well. I guess it is all what you are used to! I suppose I would become accustomed to this quiet country life. I am sure my dogs would love it!

Yesterday when we were out walking the neighborhood Maizie was able to walk about two blocks without breaking down. She was totally at ease. Makes me wonder how much of her walking problems are sensory overload difficulties. Living in the quiet country would possibly be a benefit to her.

Wordless Wednesday

Mindy and I Have A Text Social About Our Doctor

Here is an ongoing text I had with my good friend Mindy. Her daughter also sees our doctor that is moving out on his own. If we stay with him, which we won't...we would be going to his fourth office location in three years! We lived in Jersey when he was in his second location. Each time he has been with a different medical team. I truly hope being out on his own is his answer to job happiness.

TEXT

Mindy: How did neuro appointment go today? I got a rambling letter from doctor X. Strange! Can I still get M's medications?

Marla: We have the letter too! I have not been home to read it though. I have no idea if we can still get medications. Did the letter have a number?! Oh, and the neurologist cancelled on me!

Mindy: Awww! WTF!

Marla: Yeah! How many refills do you have?

Mindy: None! On Focalin. Have to get script every month.

Marla: Was there a phone number?

Mindy: Nope.

Marla: Well, I am sure a doctor at his former practice would take over M's case and refill the medication soon. Call as soon as you can so she does not have to go without her medication.

Mindy: In my spare time!

Marla: I know. I know. But, it has to be done. I am going to try a neurologist in town that may be willing to do all of her medications. X left us in a real bind.

Mindy: Wait till you read the letter! It makes no sense!

Marla: Oh, my.

Mindy: Crap! She needs her refill soon!

Marla: I would call for you if they allowed it. I understand you are so busy with a new job right now.

Mindy: I know. I will call at lunch today.

Marla: I just called the neuro I told you about and she may be able to do all Maizie's medications. She is a Pediatric neurologist who specializes in Epilepsy. I would not have to travel to Indy or see a second doctor for her psych medications. Very nice. Of course, they don't take our insurance. Just my luck. I will try out of network approval.

Mindy: What is your insurance?

Marla: Blue Cross of NJ. Just got off the phone with insurance and the doctor's office has to call them. Called the doctor's office and they said they have never had to call. Usually patient calls. Finally, the doctor got the authorization form and wrote up reasons we should get full coverage. A plea. I am praying they accept. I refuse to go into major medical debt again.

Mindy: Do you think they will fill M's?

Marla: If you have refill script pharmacy will fill it. If you don't have a refill you will have to have office get chart and ask for it to be called in. I don't know if they will make you see another doctor in their practice first or not?

Mindy: Okay!!!!! What a mess! We finally get a doctor and this happens.

Marla: Tell me about it.

Are You Kidding Me?

Once again today did not go as I had planned when I woke up this morning. So what else is new, right?

Last night Alex was up a lot. She could not stop coughing. Every time she coughed I jumped up as if I was the one who had to go take care of her. Needless to say, I did not sleep well.

Melissa left around six this morning. While the kids were sleeping I took advantage of that time to shower. Not being used to getting two kids ready and not knowing the area I wanted plenty of time to prepare.

Maizie woke up around eight and Alex slept till ten. After I had Alex all ready Joe texted me that the neurologist missed a flight and would not be able to make it to the office today! I could not believe it and at the same time I could totally believe it.

Meanwhile Melissa had planned to leave work early to pick up Alex and take her to the pediatrician. Turns out she has a severe ear infection and croup. Lovely.

The good news is Maizie did not have a seizure today. I was relieved we did not have to make the drive there. I am always up for a lazy day. I was not happy that we have to wait longer to tweak medications or discuss test results. Hopefully there will not be bad weather next time we hit the road. Appointments far away in the winter really suck!

Joe let me know that we got a letter from the doctor in town that left the practice. He is opening his own practice! This is okay news. He had an envelope in the letter with a stamp on it. You are supposed to fill it out if you are going to be his patient. However, the place and number are yet to be determined. So...what are people supposed to do in the meantime? I think we will be looking elsewhere. But, at the same time I can't make up my mind. What if......Ahhhhhhh!

Maizie and I Hit the Road...to Guilford

Today Maizie and I set out on an epic road trip. Okay, maybe not epic...but for us it is leaving the house and leaving our town so it is a big deal! Wahoo! Our destination...Guilford, Indiana to visit with my little sister Melissa and my niece Alex. The morning started out pretty bad. Ice covered roads led me to think we would have to cancel our trip. Then, Maizie had a seizure and required her sleepy time. Joe was acting all nervous like. What will he do without me?! Finally, after looking at the weather online and debating Maizie's level of coping we hit the road.

Everything went fine. Except for the fact that Maizie insisted on listening to the Hairspray sound track twice followed by the lovely High School Musical soundtrack. Oh, my God. I thought after about an hour I was going to crack up! It kept her entertained and that was important.

Guilford has quite the rolling hills. Beautiful trees and farms led the way back to my sister's new house. The hills reminded me of Jersey. We were greeted by a big neighbor dog, a giant Pyrenees watching our every move as we unpacked the car. No one is home yet so the dog was no doubt wondering who the heck we were.

Maizie found Alex's wide assortment of toddler toys and has been enjoying herself ever since. It sucks that no one is home yet, but hey...they gotta earn a living.

Tomorrow, I take Maizie to her neurology appointment in Indy. I am a little concerned the weather will be a challenge. I hope not, we really need to make this appointment. We recently received a letter from Maizie's doctor in town that handles her medications. In the last year he has changed offices and now he is apparently quiting his practice. Personally, I am guessing he had a nervous break down. I could be wrong but the way he went on and on at one of our last visits I would not be surprised. Remember when he read all of Maizie's labs wrong and told us she is having,"rapid brain cell death." A few months after that I had a long discussion about how we expect to have our phone calls returned after given such shocking news. I also explained an apology would have been nice for the lab mix up. The doctor then went off about how he works such long hours and is so tired and barely has time to eat. Oh, poor guy! I was not too sympathetic.

Now I am forced to search for another doctor to handle her medications. I am so not happy about this and yet it had needed to be done anyway. We have yet to find a doctor we like. I have been searching for one for nine years! I love the doctor in Indianapolis but we need someone closer and the neurologist will not handle all of her medication needs, just the seizure meds.

I am off to make Maizie dinner and wander around the house to soak in the aura that is my little sister! I miss her so much and wish she would just be home from work now!

I may get behind on some of your blogs but know I will get caught up soon!Alex and Melissa are home! When Tim came in with Alex she was so tired and cranky. Poor kiddo has another cold. She calls her dehumidifier "Buddy".

I can't believe I am finally here with my sister in her house! Very nice!