Walking the Line Between Discipline and Depression

Nothing much has changed with little miss Maizie. I have a call into the neurologist to discuss what to do. It is possible we will have to try medication number two.

Whenever she is sleeping...which is the best way to get over the migraine (CVS) all I want to do is curl up on the couch and sleep near her. This is what she looked like this morning.The house is dark and quiet and there is not too much for me to do. Okay, sure I could reorganize stuff, clean or play on the computer but that stuff gets boring. What I really want is for Maizie to be up, playing and happy....so I get depressed and just want to sleep until she gets up. It is a bad habit to be in. Or maybe it is a coping mechanism and an okay way to handle an ongoing situation that I can not change?

Yesterday was a stressful day. My nephew who has been stuggling in school is still not doing well. His depression is getting the best of him. His mom will call the doctor today and he will be seen soon.

I took Maizie over to play with Christian yesterday while Marie took my nephew to his school to clean out his locker. While he was there I removed the computer from their house. This will be the second time the computer has been removed due to his obsession with all things Pokemon...especially the posting boards. It is not the Pokemon we have the problem with. It is that Pokemon is his life. Invitations to play with friends are refused. Homework is deemed a waste of time when there are boards to post on. He is an addict. A slave to the ongoing discussions and debates regarding Pokemon, the moderators on the site and what topics should be discussed.

Most of his computer history had been erased despite me warning him never to erase it. He forgot to erase yesterdays though and I was able to see and read the posts. Not pretty. The computer was returned a week ago for school use only. Marie requested that if he did not follow the rules set up for completing his homework on the computer we would remove it. Apparently, she hesitated to call me when he was repeatedly locking her out of her own bedroom to get in his Pokemon posts. I did not take this lightly and not only removed the computer but requested permission to remove the door knobs as well. Things did not go well when Daniel returned home from cleaning out his locker. It was like watching a meth addict screaming for a hit. He became totally obsessed with me returning the door knob to the bathroom that he never uses. I think it was beyond his comprehension that we followed through with removing the computer. It was too painful for him to comprehend. I took the computer and knobs back to my house. Not fifteen minutes had passed when my sister called me up crying and begging me to bring the door knob to the bathroom back. I was not pleased. My sister talks big but when the pressure is turned on from her son she crumbles. It is easier to let him play the game(take the drug that is his Pokemon)then it is to listen to him nag, cry and scream for hours on end. I can see where she would crumble. I was able to leave the house. She had to stay and be followed around by a tantruming thirteen year old. Not pretty.

Once home the phone calls began. First it was my nephew begging me for the door knob back to the bathroom he never uses. Begging does not begin to describe it. It was more like listening to a cat screaming. Suddenly he realized that he wanted to use the bathroom he never uses and stop taking over his mother's bathroom (which we agreed he could still use, and still had a lock on it). The whole argument made no sense at all. The bottom line was he knew since Joe and I took the computer that he was screwed. We don't back down like his Grandparents did three days after taking the computer away. They were overwhelmed with his constant requests to go to their house and use the computer for "homework". Since he was not constantly observed we realized he was really playing online...again. His computer will be here for a long long time and he knows it. There will be no computer until his grades begin to make the slow climb back up, he must treat his mother and little brother with some respect and most importantly he has to stop lying about almost everything.

It is a fine line to walk between discipline and depression. Possibly even OCD. Our family has always agreed though that even with depression you don't lock your mother out of her own room and scream at her for hours on end. Fortunately my nephew has not only his mother to deal with but he has Grandparents and two sets of Aunts and Uncles who are not willing to back down...who are not willing to let him be sucked into a world of online addiction. He even went out on a limb and called my little sister Meljo in Guilford. To his amazement Melissa stood behind me and the removal of the computer and door knobs. Of course he does not see this as a positive thing. He knows how to manipulate his mother who has a disability...a huge stress on its own for a child to deal with. I know...I grew up with my sister and she is wonderful and amazing but she struggles and so we all dance along a bizzare line of having to help out and yet not wanting to take over her life. You watch and wait....if she can't handle certain aspects of parenting what do you do? There is much more to this topic than I care to explain here. The family dynamics are complex but the bottom line is we all love my nephew and are trying to work together to help him.

The school is not following through on what they said they were going to do. No surprise to me. It is unfortunate that he will probably fall out of the gifted and talented program by fall. A school counselor encouraged us to keep the computer in the home so he could earn one hour a night online. I was against it but at their request we followed through. Lets just say that backfired as I figured it would. My ongoing concern is that he have something positive to replace this computer obsession with. At this point he is so furious he just screams, "There is nothing else to do!"

Maizie becomes quite stressed when the discussion of my nephew comes up. She has always said, "We are not getting along so much now." Despite being only three years apart it as if they are light years apart. Maizie has lost many priveldges in her ten years despite being Autistic and chronically ill. We have removed her toys for months at a time as she earned them back through increasingly good behavior. At one very low point she had nothing but a bed in her room. Looking back I always worried we did the wrong thing in removing her toys and making her work to get them back. But, now when we discuss what is going on with my nephew she remembers those three very tough times, shakes her head and says,"I had to follow the rules. It is better now." That was at a time when Maizie was very abusive and we were trying to figure out what was beyond her control and what she needed to be disciplined for.

After agonizing we decided to discipline "as if" she understood that hitting was wrong. It was hard to know because her communication was not strong and she struggled in all areas of development. I don't know if it was the strict "earning back of toys" that we began or if it was just time and development that helped. I guess we will never know. I do think it says something since Maizie can remember her toys being packed away and knows that was a result of "not following the rules". Maizie also knows that when we say something will happen if she chooses to do 'blank and blank', it will. If she misbehaves she pays a price. My nephew has rarely experienced that. As he gets older the misbehavior has a stronger impact on those around him and his mom has been pushed to make changes. This will be a long and difficult process.

This morning I woke up feeling so guilty for taking the computer and the door knobs despite his mother's agreement and request for help. I called Marie and asked her if she was mad. She said she knows it has to be done but yet she began crying again and we discussed replacing the bathroom door knob. I agreed to replace it today. It is really not that big of a deal. My only concern is Daniel removing it and placing it on his mother's bedroom door. I guess we will deal with that if it happens.

Down hill we go...if we were even ever going up?

Today started out the same. Maizie prepares by putting on her sunglasses and waiting for it to hit. In the picture above she is actually sound asleep after the attack.

I guess we were feeling overly adventurous and made plans to meet our friends for dinner at Mi Pueblo. Maizie seemed well and put on her new dress and her Hannah Montana earrings. She even requested a little blush for her cheeks.

We were looking forward to a night out of this tiny house. We arrived and began talking with our friends. Maizie worked diligently on one dot to dot waiting for the little kids to arrive. Only about five minutes passed and she pulled me close to her and whispered, "My belly hurts." I took her to the restroom where she became very angry and insisted we leave at once to go home and get her medicine. Maizie is convinced the smell of mexican food triggered the episode and insists we never go to my favorite restaurant again. Can you hear me screaming?

I slowly walked back to our table. I felt like someone slapped me in the face. I had to tell everyone we needed to leave, that Maizie was having an episode again. We paid for our barely sipped on drinks and went home. Once home Maizie requested her pajamas. I left to run errands and within a few minutes Joe texted me that Maizie was vomiting. I was crushed. I am so beyond crying though. It reaches a point where you just don't cry because once you start you can't stop and worse...you know you will feel like crap the next day because of it. So...I don't cry and I don't wallow in it. It is just our life right now. It sucks though. I move back and forth between anger and overwhelming sadness. Thank god for my antidepressants or I would be a mess.

We called the neurologist and were given the go ahead to give Maizie the medications again since she vomited them out. The neurologist freaked Joe out by mentioning needing to go to the hospital. She agreed to wait until morning and see how Maizie is doing. The vomiting was relentless. After losing another pill she layed and moaned with pain. I gave her the third pill and prayed she could keep it down. Success! The vomiting slowed and she gradually began to be more coherent.

Now, we are watching The Jeff Corwin Experience...Maizie's new obsession. We are in for a long night of insomnia. Wahoo! Despite it all she takes it in stride. Possibly because she knows little else? Can you hear my heart breaking? Thankfully, when she is well we are able to drop everything and make the best of it.

The Guinea Pig Way

Our Schedule...New Family Members

I have been waiting to give an update on Maizie. Figuring out our new "schedule" and what is going on with her health has been a tad difficult to say the least. The good news is the vomiting, for now...has ceased. The bad news is that she is having just two healthy days a week. The rest go like this....

Wake up around anywhere between six and nine.
Try to eat breakfast.
Watch some television.
I wait and watch for the "signs" which are dizziness, eye blinking and insisting I "turn off the sun". She slides under the big blanket and covers her head. Everything has to be turned off. No television and no lights. The house goes silent.

By ten I will usually know if we will have a functional day.
If the day is not functional I proceed to care for Maizie by giving her the medications to stop the pain in her belly and hopefully stop her from vomiting. I continue to "wait and watch".
Maizie will sit very still and looks miserable, if she is lucky she falls asleep and wakes up later around three in the afternoon.

Once awake she looks like a totally different child (a healthy one) and will say, "What are we doing today?" She never seems to understand that most of our day is gone at this point.
If we can I take her out in the evening. We have begun setting up a few more get-togethers at night for play and dinner with friends. Most evenings though she is content to stay at home and lacks the energy needed to go anywhere. Did I mention she can't fall asleep at night either? So...the evening hours are going way into the night. Even on days when she does not need to nap she will be up struggling to fall asleep until about midnight.

We are still in the tweaking phase of her mew migraine medication so I am trying to keep hope that our lives will continue to improve.

I figured out today that if we had a conventional school year she would have missed over fifty days of schooling since the fall. Ugh. No wonder homeschooling is our best option.

Sunday Maizie was invited by her friend Chloe to visit Science Central. I was so nervous all morning. Maize had a mild "spell" at ten, I tweaked her 'as needed' medication in the hopes that she would wake up sooner and be able to go. I waited until the very last minute and woke her up. Waking her up usually is a disaster in the making. More than anything I wanted her to be able to go out with a friend and have fun! I kept telling myself I would be more upset than Maizie if we had to cancel. I could not stand the thought of Maizie being sad over missing another outing. I do think this lack of activities is harder on me though. I go stir crazy and still have a very hard time dealing with always having an unknown schedule.

I woke Maizie up at twelve thirty. Chloe's parents were going to pick her up at one o'clock. She was slow moving but managed to get dressed, eat some grapes and decided she would go to Science Central. Susie, Chloe's mom reported that Maizie had a few challenges but over all the trip went well. I was so happy!

There has been a couple of new additions to the family. For months Maizie has been filling my phone with You Tube videos of guinea pigs. I was trying hard to ignore her constant pleading for a pet guinea pig. Finally, we gave in. Meet Maizie's new cavies....Zebra and Salem! Getting used to having two guinea pigs to care for has been a challenge. Darwin, our shepherd loves them. He wants to clean and cuddle them constantly. Stella just wants to eat them! Maizie has had a list of new rules to learn in regards to caring for the little piggies.
I must admit that they are the cuddly little creatures I have ever known. Both will sit on your lap for as long as you like. Their little cooing noises are quite comforting. Maizie is smitten with them. Every chance Maizie gets she is holding them, reading about them or thinking about when she gets to hold them next! Below are some pictures of a science project Joe and Maizie are working on. It was great to see Maizie hard at work. Granted, it was night time. But, we do what we gotta do to fit in the learning. Good thing life lends itself to many learning opportunities but structured learning is something we still like to do.

Advocating in School for the "Super Smart" Kid

This week I had the pleasure of helping my sister advocate for her teenage son who is going through a difficult time in school. He went from an A plus student in advanced classes to several failing grades. He is known as the "Super Smart/Funny" kid. This transition to failing seemed to happen in less than a few months. Depression and anxiety has become a serious problem for my nephew making school quite a challenge.

My nephew is a great kid and I feel very positive that he will be able to turn around his grades. Some assistance in helping him get them back up is needed. Almost all of his teachers attended the meeting. All were positive and genuinely like my nephew and want him to succeed.

When we first arrived it seemed like an IEP meeting. All of the teachers took turns saying a few positive things about my nephew followed by the more troubling areas of concern. My sister took it all in stride and was quite composed. I was very impressed since many parents crumble at that part of the meeting. Tears fly and tension rises. My sister took it all in and was ready to develop a plan of action.

After hearing all of the concerning news the teachers developed a plan for monitoring homework and a strategy was developed to help my nephew cope with catching up. The teachers are all aware of his struggles with depression and anxiety and were more than willing to cut him some slack. Part of the problem was that they had been giving him ample opportunities to bring up his grades and he was still floundering.

At home measures were taken to remove distractions and monitor homework more closely. Everyone seems to be working together as one big cohesive team. It seems like we will have a happily ever after ending. My nephew has never struggled like this in school before and when he attended the second half of the meeting he seemed to understand what needed to be done and was willing to try and meet the expectations. At least that is what we are praying for.

All of the teachers were in agreement that he had the ability to do the work but his anxiety and depression were making things much more difficult for him. He is getting help from a doctor and counselor so all should be on the up and up soon.

This had me remembering the many IEP meetings I have been to for Maizie and several other children with special needs. None of them ever went as smoothly as this meeting for my nephew. I did not get the feeling that any of the teachers were trying to hide anything or were resisting what needed to be done to help him.

In my IEP's for Maizie and other kids the tension was usually much greater, the red tape intense. I suppose months or years of struggle lead to tension. It makes sense. A child's inability to learn and cope increases the stress of the meeting. Even the best team of support will eventually become frustrated and begin to point blame.

My nephew's situation was "fresh"...a new phenomenon for him and his teachers. But, if it continues what will happen? We all know what difficulties depression and anxiety can bring to a child's schooling experience. A bright, exceptionally intelligent student can become left behind and teachers grow tired...sometimes they give up. Would he become a child whose outlook from teachers’ changes? Does knowing that a child has the capacity to learn and succeed above his grade level put them at an advantage or disadvantage when things go wrong?

Back when I was in school I remember thinking that the kids in the higher level classes (AP) had more advantages. They seemed to be treated with more respect. The teachers seemed to look upon them as the "better" students to teach. Interesting field trips were aplenty and opportunities were given from teachers who actually seemed excited to be educating them.

I wish that all students were given the respect and team mentality that I witnessed this week. In my experience it does not usually work the same for children with disabilities. Parents are questioned and blamed, teachers are questioned and blamed...the atmosphere is different and pressured. Funding, rules and expectations are all involved...things get heated. I consider myself to be a very positive and team focused advocate. I work with the schools in a positive way and that always has its advantages. But, even still...when your child has a disability from early on...well...it is just not the same. In many situations people don't know what to do to help the child. Expectations are either too high or way too low.

With my nephew who is not in special education people seemed willing to bend over backwards and make things happen...fast. They have high expectations but they are fair. Oh, how I wish that could have been my overall experience with Maizie. Even in the best schools I had to defend, prove, make a case, study test scores, observe, and the list goes on.

Expectations set for Maizie were sometimes so low that I would struggle to prove her skills and at other times the expectations were so high I had to prove her lack of skills. It was exhausting.

I did go in prepared for this meeting with a list of questions, read the teacher's websites, read over the homework assignments and wrote a follow up letter to my nephews meeting. You just never know where a situation like this could lead and I want to be ready to advocate for him again if it is needed.

Part of me thinks all will be well. Another part worries about ongoing anxiety/depression and the toll that can take on a kid. When does a top student become a student with special needs? So far the school is treating his situation as requiring support. I am very glad for that. But...will that support change if those needs become,"special"? It is very interesting for me to think about.

Trapper is Waiting for His Very Own Assistance Dog...You Wanna Help?

Dogs are the best. As you all know our daughter Maizie loves dogs. Maizie is Autistic and has a special devotion to dogs and animals of all kinds. Dogs are her favorite. When I told Maizie about a little boy who wants a dog to help him every day she suggested we blog about it on our Dog Park Days blog. What a great idea! Trapper is an autistic three year old boy whose family wants to provide him with a dog that is specially trained to help Autistic children. These incredible dogs can help the child deal with stress and overcome many obstacles faced by autistic children. Even though our dogs are not therapy dogs I have seen how they touch Maizie's life. When Maizie is going into a cyclical vomiting syndrome episode our German Shepherd mix Darwin is always at her side. He guards her bedroom and notifies us when she is sick. The best benefit is the loving relationship Darwin and Maizie have. They are buddies. Considering the social difficulties Maizie has Darwin is a safe friend who is always there for her.

Maizie and I both think that thearpy dogs are a fantastic idea for Autistic children and adults. Please take some time to read about how assistance dogs can help.

If you are interested in helping Tucker be matched with a loving assistance dog please visit his website called 4 Paws for Trapper. Trapper is awaiting a dog through 4 Paws for Ability. As you can imagine training a dog for service is an expensive process and Trapper's family needs some help. You can also assist by purchasing a collar and leash for your special pup at Feline Fido. Read how the Feline Fido store is helping out Trapper HERE.

On a side note, check out other Autism Hub bloggers seen in the list on Left Brain/Right Brain who blogged on the American Academy of Pediatric's Request for families to speak out on vaccines, as seen in this post.

American Academy of Pediatrics is Looking for Stories to Share

The American Academy of Pediatrics is looking for families that are available to share their stories in regards to supporting vaccinations. Considering the increase in Autism stories in the media it is important to share interesting stories where families understand that vaccinations are not the cause. Please read the following letter to see if you are interested. If you are, e-mail the AAP at the address provided following the letter.


Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews.

We are looking for two types of parents who could serve as spokespersons: Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child's vaccines and his or her autism. Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking outon the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas. As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP's goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics


Please e-mail ssmartin@aap.org (Susan Stevens Martin) direct.

Kate Winslet in Romance and Cigarettes

This is the scene that I just fell in love with. Dramatic...yes....but so beautiful.

A Kicking Good Film....

You all know I love John Tuturro so I was very surprised that I had never seen the movie Romance and Cigarettes that he wrote and directed.

Kate Winslett sings under water as Tula with fish swimming around her. Her imagination takes over when she seems to be drowning in heart ache. I swear I have felt that way many times. Absolutely gorgeous. I could watch that scene over and over. Beautiful. The clip is above.

The settings are never boring. Reminds me of where we live. Character cracking through every house, on every corner. The color and lighting is at times retro and makes me feel all cozy. You get the feeling that the movie is taking place in a time that has kind of stood still. Lots of 50's furniture and yet modern times. The singing was at times fun and touching. Gives me goose bumps. The music was not overwhleming like some musicals. The characters seem to break into song at just the right moments to fully imagine their joy but usually heart ache and misery.

I love love love this movie. One of the most creative and inspiring films I have seen in years. It will be my wish that John Tuturro writes and directs many many more films. He is very talented.

Happy Valentine's Day!

Today my love, Joe is in the beautiful land of Jersey. Probably soaking up all the love that is so abundant there. ;) To my couple of Jersey readers...just kidding. We kinda love Jersey...I was just too Midwest to handle living there.

Maizie and I were able to go out with our friend Jason for yummy chinese food, a browsing trip to Toys R Us and finally Dairy Queen! What a night. Lots of fun and laughing was had. Except for when Maizie said, "I don't want Jason to say any more words. He talks and it makes me tired." Luckily, she whispered this to me but I felt I had to explain the whispering a bit.

Jason, knowing Maizie for years took it well. Jason and Maizie both like to talk.....a lot. The problem is with the waiting for one another to be finished. Maizie thinks Jason talks on and on and very fast. Truth be told, he is a very fast talker. Maizie on the other hand wants to talk a lot but talks very slow, it takes time for her to grasp her words and get out what she wants to say. So...when she has a thought she treis to blurt it out immediately or the thought will quickly be lost. This can make her appear quite rude.

If she asks Jason a question he wants to answer with a long story. Maizie does not like that. She wants an answer brief and to the point. Even though Jason is an adult it is difficult for him to wait patiently for Maizie to get the words out. He waits, but I know it is hard for him. Maizie also interrupts...a lot. We are working on this annoying habit of interrupting but our progress has moved backwards with being virtually alone for the last month of ongoing illness. Jason and Maizie together are exhausting. Cute but very tiring.

I was given this beautiful Peace Award above from Elaine at It's Not a Weekend;It's A Lifestyle. Elaine created it herself and I think it is lovely. A perfect gift for Valentine's Day. For all my readers if you would like this award it is given to you from a place of peace and friendship. Please pass it on and spread Peace!
I feel so lucky to have been given this award from Beth at Fragile What? Beth created this adorable little award for blogging friends. I love it! Thank you Beth! Being Valentine's Day I just can't pick a few. I am passing this one along to all of my loyal viewers as well. Enjoy Sweethearts! Please pass it on.

Baby Archer! Questions....too many of them! Blog Award!

Today Maizie and I had another pretty good day. The days start late in the afternoon. Maizie seems to need even more time than normal to wake up and get in the groove of things. This afternoon we went to Carol's to see their new baby Archer. What a cutie. Maizie was quite shy at first and refused to hold the baby. Her main focus was on her doggie buddies. As you can see in the photo above she loves to cuddle with the dogs. Cuddling with babies is quite foreign to her. Finally, I said I needed her to hold the baby for me so I could do something. She fell for it and was quite happy holding Archie. We both agreed he makes little sounds that sound like a guinea pig. Too cute! Carol is adjusting quite well to being a new mommy! I think little baby Archer is making Maizie think about a lot of things in her life. After that we went to my parent's house for dinner. I knew I was pushing the limits but Maizie looked great and seemed to feel healthy so we went for it. On the way home the talking began. Maizie began asking me millions of questions. Not just ordinary questions....deep questions. I was so tired and had to really force myself to be alert and go with the flow of her ongoing questioning. It continued well into the night. Until about midnight to be exact! Here are a few of the questions I tried to answer tonight...

What day will I be grown up? (nothing I said satisfied this answer, considering her inablity to understand days and time it was futile)

Was I born in a belly?

Why did my birth mother not adopt me?

When will you have another adoption in your belly?

I want to adopt a brother and a sister now!

Why can't you get a baby in there?

Can Darwin have baby cubs? Can Stella have baby cubs?

Why can't I have a baby cub?

Those are only the ones I remember! It was a frenzy of questions.

The evening is Maizie's time. Even when she is sick she feels a bit better at night and is most coherent and wanting to learn. This goes against everything my body wants! I want to be mellow, non verbal and usually asleep when she just seems to start rolling. This has been an ongoing theme in our lives with Maizie.

For the first time though I am beginning to think we need to make more schedule adjustments to really take advantage of this time in the night when she is really wanting to talk and do school work even. It is just so backwards from everything I want and am used to. But, I am realizing we need to make some changes to accomodate her body's schedule and keep mine sane and healthy at the same time. Wish us luck!

A little bit of blogging business before I go off to to la la land for sleepy time.

BonBon Mama from Is This What You Do All Day gave me this cool 'Bloggers of the World' award. Thank you so much Bon Bon Mama!

I am going to pass this award on to someone who is very into world issues and the political issues of today. Angie from Gathering Up the Pebbles! I gave her the Kissy Kissy award recently but this one is just so fitting for her too! Angie's children also created a blog for going Green. I would like to pass this award on to them as well at Flower Petals.

Angie's kids are working hard to discover new ways to save the world one step at a time. Drop on by and let them know you are proud of them!

I am also going to pass this award on to Anne at Existence is Wonderful. Anne asks the most amazing, philosophical questions of the world. I am always learning and thinking about new things when I read her posts. Some of them are way beyond my intelligence level but I do enjoy her writing!

An Outing and A New Look at What 'One Day at A Time' Truly Means

Last night Maizie and I left the house! I know...I know...amazing! We headed over to my friend Susie's house for pizza. I brought Joe's brownies that I had been begging him to make again. I have never really liked brownies but these.....lord, they are so good. He makes everything from scratch. He used Ghirardeli cocoa and their semi sweet chips for the frosting. Susie e-mailed me this proof of yumminess today,"Hopefully I will be able to restrain myself from venturing downstairs in the night to eat that last brownie....yum! Tell Joe that his frosting is primo." Look at the picture I took above! Don't you just think the brownie is beautiful. Yum! I am so lucky.

Maizie has been without the CVS for the last three days...at least I think so. She is still wobbly from her new medication. Yesterday was her best day so far. Today, I felt like I was watching and waiting for it to happen. She just had the look of an episode waiting to over take her. Her activity level was low and she was blinking her eyes all day and complaining of the lights hurting her eyes.

I had an appointment to get my hair colored and trimmed this afternoon but could tell early on in the day that was not going to happen. A twinge of depression creeped over me as I knew we were in for another day of not leaving the house. As Maizie became more out of it I went ahead and gave her some of the medication that would help with nausea and it seemed to help. It is very strange looking at these episodes in the new light of CVS and wondering the best way to go about dealing with them.

Last night at Susie's I took the craft I had prepared for Children's Church on Sunday. Maizie was quite pleased to work on a craft with a friend. Below Chloe and Maizie are happy to show off their Heart Wreaths. It was so nice to hang out and talk with Susie. I know Maizie had a wonderful time playing. She was so worn out once we came home. After throwing up daily for four weeks I am sure I would tire easily too.

We are at this stage where we just get up in the morning and wonder what will happen? Will we be able to leave the house? Be social? I keep our calendar empty. It helps to reduce my stress. The more things I am forced to cancel the more I panic. So, if I play it one day at a time things go better. I used to think we took it a day at a time but now I feel we have reached a whole new level in taking everything slow. Maizie is not in school, tutoring has been temporarily stopped until we are sure she is feeling better, we have no extra activities, we are in no clubs or groups. Ugh. This is not the way I want it. It is just the way it needs to be right now. I remember posting before this long cycle that we needed to be doing more, we were even looking into schooling options. Then BOOM!

I have to constantly refocus on what is most important in life and in Maizie's. When you have to strip your lives of most of the things you think are needed for a "normal childhood" you feel a little.....concerned and freaked out. One thing is for sure....we will be homeschooling all year round to make up for all of the school time she is missing.

"Kissy Kissy" and Maybe We are on the Up and Up!

My readers are so smart! All three of you remembered my favorite candy! I am thrilled to give the "kissy kissy" award to the following...

1.Angie
2.Melissa
3.Nik's Mom
Enjoy! Please pass it on in the spirit of a, "chaste kiss given to say thank you for friendships and comments in the blogosphere."

Now for an update on this life of mine. Today was the first day we managed to get Maizie out of the house for something other than a doctor's appointment or a hospital stay! Wahoo! It is possible she is at the end of this four week long cyclical vomiting syndrome cycle. I thought it would never end. God willing, I am not jinxing myself by saying we are in the clear for now. This will be the first day where she has gone from looking like this the majority of the day.Both Maizie and Joe were having a hard time staying awake on Friday while we waited for the neurologist. Maizie had been throwing up all morning and could not even walk. Joe had to carry her everywhere. She is not so easy to carry around anymore! Thank goodness Joe is available to help most of the time. We went over Maizie's medications and discussed the tyramine-free diet that she is on. Gradually we will introduce foods to keep an eye on what might bother her. A cycle can begin from stress, the flu, a cold or sometimes certain foods like chocolate. Even though Maizie tested negative for celiac disease and gluten problems we are going to try watching her consumption in that area carefully. There are no guarantees that food will help but it is worth a shot. Notice the big ol' metal bow Maizie has in the pictures.

I found this adorable pink Sick Bear bowl and purchased it for Maizie. Joe and I figured when you have to spend so much time vomiting you may as well have a cute bowl to look at. Maizie loves it.

Hopefully we are on the up and up. Marie and I taught Sunday School today. It is so sad when Maizie can't go to church. I had to leave home with a bag full of craft supplies. For Maizie, missing a craft time is torture! I could tell she was sad she could not go. At the time I left for church she was still in the "iffy" part of the day and we could not risk it. I must admit I was not looking forward to going to church. Explaining what is going on with Maizie is draining. Today, I went prepared. I printed off some brochures on CVS and handed them out when asked about Maizie. Worked like a charm.

Once I came home we all went to Blockbuster so Maizie could take her time brousing movies. She picked out Twitches Too and a Disney movie called Back on Board (something to do with skateboarding). After that we went to the pet store to get a few guppies for the fish tank. Despite being a little wobbly while walking she did great.

Now, we are all cozy at home because it is totally freezing out.

The other night I went out to dinner with Mindy. We had a great time. I so needed to get out! On the way home I drove through one of our flooded downtown streets.
I have never driven through such high flood water before. I figured since the police were pointing the way I could make it through. Considering my sheltered life lately I was quite excited driving through this much water. I decided to pause and see what kind of picture my i Phone would take of the scene. I must say it did an okay job. The river is so high right now I feel a little nervous living where we do.

I hope everyone is having a restful Sunday.

Cool Awards and A Book Tag Help me Escape A Bit!

In an effort to divert my attention from our ongoing saga here I am going to show off a few of my awards. This awesome eagle attitude award reminds me of my favorite show The Colbert Report (yeah, I really think Colbert is hot...I can't help it) was given to me by Tulip Mom. Thank you so much. I don't always have the best attitude but I am certainly known as having "attitude". I am pleased to pass this award on to Pregnantly Plump. I can always visit lil' Elvis and his mama at Pregnantly Plump if I need to smile. Her videos are adorable and her positive and playful attitude towards motherhood is always inspiring.



My second award was given to me by Find Out What Jen Finds. I was given this, "chaste kiss given to say thank you for friendships and comments in the blogosphere." I am going to pass this one onto the first blogger who can leave a comment telling me what my most favoritest candy is!!!!!!! I have mentioned two types of candy in my posts. Either one will get you the award. Hurry! Comment now if you wanna kiss!

Lastly, I have a tag from Gathering Up the Pebbles. Okay....I admit it. I am behind on tags and have even lost track of some of the tags I need to be doing. Please forgive me. My memory has been having issues and these last four weeks have really made keeping up with blogging a challenge. I know...blah...blah...blah....cry me a river. But, this tag....now this tag I love. It is easy, quick and a tad bit weird.

The rules: Pick up the nearest book of 123 pages or more. (No cheating!) Find Page 123. Find the first 5 sentences. Post the next 3 sentences. Tag 5 people.

The Book: Walking in Circles Before Lying Down by Merrill Markoe

The Five Sentences:

"I always know everything about someone in under three minutes."

"You don't know shit, 'I said. "That guy just stood me up.

Your 'under three minutes' thing is completely bogus. And

your instincts have been compromised by crackers."

Now for the five lucky ones to complete this tag. I was going to say some "bigger" words but Blogger seems to be still having trouble with the spell checker. Argh! So, I will keep my vocabulary simple because my spelling sucks.

1. I am Not Wrong

2. Find Out What Jen Finds

3. From Here to There and Back

4. Meljo

5. Is This What You Do All Day

Cyclical Vomiting Syndrome

First, thank you for your comments, e-mails and links for support. We do appreciate every single one of them. We are home now and getting settled back in. Maizie is now keeping down food and feeling better but still weak. We have a new diagnosis! Join us in another trip down the yellow brick road to diagnosisville!

The information on CVS (Cyclical Vomiting Syndrome) also known as Abdominal Migraines does not lie when it says determining a diagnosis can be a long and arduous process. The first time we considered the possibility that Maizie had CVS was back when she was about five years old and had a similar string of "episodes". We were searching online and came across it and thought, 'Eureka! This is it!" Well, the doctors all disagreed and we moved on. Maizie was even put through the invasive abdominal studies to determine a cause for the spells. Nothing was found. (Finding nothing is a big ol' red flag for CVS) Eventually Maizie was diagnosed with seizures instead.

Now, we are told that it is possible she still has seizures. We will find out for certain when we begin weaning her off of the seizure medication. A process we will begin once her strength has returned and we are certain this ongoing bout of CVS has ended. A prcoess that will make me nervous to say the least. She has a biological history of epilepsy so the neurologist is being extra careful. The weaning also has to be done very slowly since she has been on seizure medication for years.

Once again we have been thrown for a loop. We researched, saw doctor after doctor...all who agreed it was likely Maizie's episodes were seizures and or migraines. They were all accurate in that they were abdominal. The neurologists and the Cleveland Clinic all listened to our idea of CVS and said it was possible but that was it. There was always a little doubt since her episodes manifested so differently. I think ultimately the confusion with diagnosis came from the way her CVS presents itself. Maizie can have one episode a week and it will only involve vomiting and being very tired for a day. Every where I read this is not really mentioned as a characteristic of CVS.

The GI doctor way back when Maizie was a preschooler told me that children with CVS vomit several times an hour. Maizie's episodes are anywhere from one to six times a day. Of course we saw this same GI specialist in the hospital this week and he insisted that he had given Maizie a diagnosis of CVS way back when and we never returned to see him. Are you kidding me? I would have known if we were told anything about a diagnosis since we were beyond desperate to find help for Maizie. Joe was less than thrilled with the meeting he had in the hospital with the GI doctor but both agreed they needed to focus on the "now" and move ahead to find relief for Maizie. Depending on how this GI specialist treats us at our follow up visit we may be "moving on" to another specialist. If there is one thing I have learned it is to not waste my time putting up with doctors who treat us like we are idiots.

I was confused because Maizie's episodes look so much like a partial seizure. Her eyes blink, she becomes disoriented, fearful, unable to communicate, sweats profusely and the list goes on. It is all followed with a long sleep just like seizures can be. If you look up the postictal part of the seizure that describes what it looks like for Maizie.

It is amazing that we have not seen more hospitalizations in the past few years. When Maizie was a baby/toddler and preschooler she was often hospitalized for dehydration for ongoing vomiting that was often attributed to some unknown source and then they subsided for a long time. We focused on more pressing behavioral and learning difficulties. When I read where some children are diagnosed at the age of two or three I think, "What on earth did we do wrong?!" How was this missed for so many years? You can't help but beat yourself up. Along the way though we were also searching for more than just answers to these episodes. We had ongoing developmental, behavioral and other health concerns that we were trying to find help for.

Many of the parents know who read this blog there are so many aspects to helping your child that some take front and center while others take the back seat. These aspects tend to shift and change as time goes on. When health issues arise the developmental issues go on the back burner for a time. As a parent of a child with multiple challenges moving back and forth between the pressing concerns and the not so pressing concerns is beyond exhausting and many times very confusing. All the while you try diligently to make some sort of balance and sense out of all the areas you are trying to help your child with. Of course you also want your child to enjoy simply being a "child". This, to me is the most heart breaking aspect of working towards a diagnosis. Maizie has spent much of her child hood lying in bed, with the lights low feeling very sick intermixed with very challenging behaviors, depression and learning challenges. Where do you fit "normal" childhood experiences into all of that? It is hard, very hard. But you have to do it. Above all that has been our first and foremost focus for Maizie.

Over the last few days I could see Joe and I going through several emotions with this new diagnosis. At first we were both filled with anger and just felt furious with every doctor we had to talk to. On Sunday after our second trip to the emergency room we were talking to the neurologist and she told us that the vomiting needed to be looked into. She explained that it was not seizure related and that something was going on. I handed the phone to Joe and choked back tears. I could not stand the thought of more testing, of more "not knowing". Once at the hospital again the GI specialist insisted that without a shadow of a doubt Maizie had CVS. The pediatrician and neurologist agreed. I was once again angry and devastated. That passed and then we felt sadness and hopelessness and finally a sense of relief that there is hope now that we know what medications will help Maizie through the episodes. Finally, we felt hopeful and relieved.

The confusion comes in when we realize we have been through this before. The list of wrong diagnosis’s she has been given is long. Very long. So, why does a diagnosis matter? Is this just another wrong diagnosis that we will study and treat her for only to be disappointed when treatment does not work? God, I hope not.

I hear some people speak of never wanting to put a label on their child. I think the labels they are talking about are indeed diagnoses. Why did we search and search for a diagnosis. The answer is simple. Without a diagnosis you can't properly treat the symptoms. Without a diagnosis or a label you can't gain more knowledge of what it is you are trying to treat or accept, sometimes even celebrate.

If CVS is indeed what Maizie is dealing with we now have the proper medications to help her get through the painful, ongoing episodes. For years we have not provided her with pain medications or anti vomiting medicines to make it through. We treated her as if she was having a seizure. Once rested we encouraged her to get up and get moving! I believe pushing her to make the best of the situation would sum it up well. Now, I look back and my heart breaks a little because now we know she needs sleep and lots of it during these times. Maizie will need an ongoing medication to help her avoid the CVS episodes. Stress should be kept very very low. (That we always try to accomplish) The abdominal pain is intense and we did not know Maizie was in so much pain. Did I repeat myself? Possibly, since this for me is the most painful part of all of this. My daughter has been suffering with this for years and we put her on the wrong medications and failed to treat her pain. Of course, live, learn and move on. Once we found new ways to discuss these episodes with her we realize she was having pain all along and it was not being acknowledged or treated. Her inability to communicate pain has played a part in missing this diagnosis for so long.

This brings to mind her diagnosis of autism which affects her ability to communicate. Without this diagnosis we would not necessarily have known to try out Lindamood Bell which helped her learn to speak and read, therefore increasing her ability to express herself. For Maizie the road to the Autism diagnosis was almost as long and torturous as finding the CVS diagnosis. It was not until after discovering her chromosome disorder that the Cleveland Clinic diagnosed her with autism. Doctor after doctor told us wrong information as to why Maizie was NOT autistic. Maizie was said to be too verbal, she made eye contact and was just too social to be autistic. I am not a doctor but I knew from the autistic individuals I talk with that these were certainly not characteristics set in stone for autistic people. Finding someone that would listen to us was a different story all together.

So tonight as Maizie is beginning to smile again and has begun walking on her own I feel that ball of hope welling up within me. Maybe this time we have finally found the answer to her ongoing vomiting spells (a.k.a. seizures). Maybe this year will be the year that when she goes into an episode we will finally know what to do to help her and it will actually help!

I can say that this bout of CVS has caused me to meet my medical goals quickly for Maizie. She had her echo and it came back with one minor abnormality that will need to be looked into when she is older. Luckily, nothing to stay up nights worrying over. This week she had her abdominal ultra sound that came back fine. Maizie has had every blood test known to man in the last three weeks and all have come back normal. We are still waiting on her test results for Rhett's Syndrome and Fragile X that the Cleveland Clinic wanted done....but I finally had them taken so that was an accomplishment! Her 72 hour EEG has been done and led us to the diagnosis of CVS. Her iron pills are working and have taken care of her anemia. All in all, we have made progress. Accurate Diagnosis=Progress. God willing you will read my blog soon and find out that we are out and about again. Hopefully every post will not be about vomiting and searching for answers. I often wonder if I began blogging back when Maizie was a baby...what would it look like? I have lost friends due to our ongoing search for answers. I know some people think we are overly obsessive and some not so cool people even think we make this stuff up and just enjoy the endless drama of it all.

I had one friend say to me tonight, "It is a good thing you have the personality to deal with all of this and get the answers to help Maizie."

I cringe. It is not a personality. It does not matter if I am an extrovert or an introvert, and INFJ or an ESTJ. What matters is that I love my child and I want her to have a childhood. Maizie deserves to be well and happy. Hopefully, my friend, no matter his or her personality would do the same. Maizie has a chromosome disorder, she is autistic and now we are pretty certain she has CVS. All of these make up my lil'Maizie and I love every part of her. I love her autism, I love her chromosome disorder and amazingly enough I love her CVS. Maizie is Maizie and these aspects are a part of her but they are NOT her and yet they make her unique, they make her the Maizie I love. But, through knowing they are a part of her we can assist her in taking these very unique things about herself and moving forward with them. They won't be going away anytime soon.

I will admit that back in the day I was, for a time, "a curebie". Who would not be after every doctor we went to just said, "Hmmm...she sure is a complicated child." and sent us on our way. But, I found the outlook of searching for a cure exhausting and fruitless. Not to mention looking for a cure without a diagnosis is even more exhausting. By the time we got the diagnosis I had come to accept that I needed to change and adjust my expectations. Suddenly, the world seemed brighter and everything shifted slowly. It is weird to describe and I truly believe that only parents who have been there and then experienced that switch to loving the diagnosis can understand. And yet, the best way to go about in finding the correct diagnosis, the correct treatment and the willingness to adjust our expectations and change bits of ourselves (okay, large bits of ourselves) to assist Maizie is not about personality it is simply all about love. Call me cheesy but that is my biggest remaining feeling after this roller coaster of a ride these last several weeks. Finally....an answer. Is it the right answer? Argh! Time will tell! I hate the waiting, the wondering. No, I despise it.

As I am babbling on here I am sure some think, "So if you could wish Maizie into not having these diagnoses would you?" Ah, that is the million dollar question. And what good comes of asking it. Nothing, my dear. Nothing at all.

The Vomiting Continues and We Go Back to the Hospital

I so wish I had good news to post today. Joe and I are about ready to crack, I can only imagine how Maizie feels. Right now she is sound asleep after another vomiting spell.

The neurologist has looked over most of the EEG and does not see seizure activity. Now, we are told that does mean anything. She may still be having seizures. But, the neurologist thinks the vomiting is something else and she needs to see a gastroenterologist. We were not happy when we heard this.

Yesterday we were in the ER again for vomiting since Maizie can not keep her medications down. They did an I.V. of her seizure med and sent us on our way. Umm...well, it only took about three hours before she was given the I.V. What a frustrating way to spend a Sunday. Not to mention the doctor was a total ass. Of course he was trying to tell us it did not look like seizure activity. Well, maybe he is right! Of course I still think he was an ass to us. Is it this hard to find a diagnosis. We are going on year number ten with these "seizures" and "vomiting spells". This is by far the worst ongoing activity she has ever had. There just has to be some answers. Some help for her! Not even medication to stop vomiting is helping.

So, today on the phone with the neurologist she went on about weaning her off the Lamictal and keeping the Depakote which I did not feel comftorable doing on my own. I am always doing all of this and nothing is working or helping! Then the doctor decided to have her admitted again and get a bunch more tests run with a GI specialist involved. Maizie had a GI work up when she was younger and nothing came of it. Once again, I am thinking...cyclical vomiting syndrome?? The thought of putting her through more testing is totally freaking me out. I just feel awful when I think about her having to go through any more.

We are being told probably seizures but the vomiting is something else all together. I seriously do not know what to think or what to believe. All I know is I am tired and the thought of taking her back to the hospital makes me want to cry. Okay, the thought of it is making me cry!

Maizie is not going to be happy. I try and think positive that we will find out something and get to the bottom of what is making Maizie so sick. We are going on three weeks of Maizie throwing up, sleeping, seizing, etc. There have been numerous blood tests and everything comes back normal.

Joe had to cancel another very important business trip. I know that did not go over well. Not good.

Please keep Maizie in your prayers. Say a prayer we are able to think positive and be strong at the hospital. Hopefully Maizie has her own room. It certainly did not go well the short time she had a room mate last time. We are to that point where we need to make things happen.

I have not even called my family yet because I am in that "very upset weepy mode" and just don't like calling family when I am like that.

Well, I better stop blogging and get packing. I will write as soon as possible to update you all.

Happy Birthday Christian!

Last night we went to my mom and dad's house to celebrate my nephew Christian's fifth birthday. Maizie had two big seizures that day. We were very lucky to have even left the house last night. I was so worried we were going to need to cancel.

It seems the only time we can really get out is in the evenings. It is like we are vampires. Too weird.

Christian was so excited to be turning five. He says he is sure he will be able to ride his bike faster now that he is the big ol' five! I am sure he is right. This was the first time Maizie and Christian had seen one another for weeks. They are so close that when they are apart they really miss one another. We will have to start visiting in the evenings until we can get Maizie feeling better.

Welcome Baby Archer!

On Friday January 25, 2008 Archer Michael was born! You may remember me telling you about the birthing class I attended with my friend Carol. Well, this is her little guy! He was born on the day we had to put Maizie in the hospital for her EEG.

This added some extra excitement to our hospital stay since Carol was just down the hall and around the corner from Maizie's room! Sean and Carol are so happy with their first baby boy. I must say he is a cutie.

So far they report he is sleeping well during the night and cries when he needs things. Usually he is quite quiet and relaxed. Sean says, "Just like we ordered." Hmmmm......must be nice! ;)

Blogger Awards

This "Wisdom" award was given to me from Elaine/Ling at It's Not a Weekend;It's A Lifestyle. Thank you! I would like to pass this award on to Grace Under Autism. I really enjoy her insights. I have to see if she has posted every day. I do love her blog.


This "You make my day award" was given to me from Michelle at In The Life of A Child. Thank you! I would like to pass this award on to Katrin at I'm Not "Wrong". I learn a lot about autism from an adult's perspective here. I love Katrin's blog.