A Tale from Tallil . . .

I received this today from my friend in Iraq. . . touching . . .

Hey,
Yeah its all true and pretty crazy. There are some things I cant talk about because of security reasons. All I remember is standing listening to my Ipod with one headphone in my left ear that way in case something does happen I will know about it. I heard a sound comin from the sky but I thought maybe it was an incoming C130 and then a loud boom with a flashing light. A force pushed me off my feet and I landed about 5 feet from where I was standing back into a table. I couldnt hear anything but ringing in both my ears, my right one more than my left. After recovering I had realized we were being attacked. It was by the grace of god that missile landed the way it did because if it had landed 5 feet in either direction I would have been seriously injured or dead. I pulled/tore the muscles in my right shoulder and have hearing loss in my right ear estimating about 5-10 percent but there is a chance it will be back. I keep a bible in my left inside pocket with a bookmark on Psalm 91 and realize how grateful/lucky i am to be today.

Thank everyone. . . for all their support at such a difficult time because through it all its what we need the most over here. The thank you letters and care packages we get are all greatly appreciated. Words cant express how appreciative we are with all the support we get. It brings up our morale and allows us to keep going....especially when the goin gets tough. I met an Iraqi boy when I went on a tour at the ziggurat and noticed that his shoes were all torn to shreds and barely fitting him as they were about 5 times his size. I made it my top priority to go to the bx and order him a pair of shoes his size. The following day during my only day off I went out to where this boy is with his father selling merchandise to the tourists at the ziggurat and gave him the shoes. The smile on his face just made my day and even my deployment. Its the kind of thing that reminds me we can still do good and that little boy will hold that memory with him forever. I have a photo of him and me together I will send. Thank you again and let everyone know I am recovering fine. Take care and god bless.

He is an amazing man . . . one who will be changed after this deployment . . .

What a difference a year makes . . .

375 days ago we had a case conference to modify Dustin's school day. It was very traumatic and very stressful as we came to terms with Dustin's behaviors in school and the possibility that he could be kicked out for the remainder of the year and put on home-bound schooling. He was being labeld a threat to the staff and the other students. We accepted the modified day - a 2 hour a day schoolday - and he received a 1:1 paraprofessional. At that time we were not sure whether it would even work. We were heading off to vacation in sunny Florida shortly after this meeting.

Dustin's day was increased to 3 hours daily in the fall. He has been doing fabulous and has moved from a room with im and the aide back into the classroom. While she stills has to direct his behavior and his work he is remaining in the classroom with the other moderatel handicapped students. He is not perfect by any means, but MAJOR progress has been made at school. He has even been able to go on several outings that the children go on for their community skills program. He is still extremely defiant, yet they are increasing their expectations and he has mastered many of his objectives and goals set forth in his IEP. That has NEVER happened.

Today we had a case conference that was quite different. We increased his day yet again - this time to 4 hours - and were promised an additional increase next fall if this goes well to 5 hours daily. That would nearly be an entire day for him. We have also been granted paraprofessional hours for this time increase, so he will still have a 1:1 assistant. It was quite miraculous as I sat in that office thinking, wow, one year ago we were at the bottom, and today there IS light at the top of the well. . .

This weekend we head off to another spring break vacation . . . with much better hope . . .

Impulsivity . . .

Usually when I talk about impulsivity, I am talking about Dustin. Today I was the impulsive one. I was sitting on the couch on the laptop, and I looked over at the stairs. We have the grossest carpet on the steps. We replaced it when we moved in in 2000. I was super inexpensive and had this crappy foam backing. It has not held up well. I decided I had enough. I got up and proceeded to rip it off the steps.

I always have paint around the house because I have this thing about buying mistint gallons of paint. If it is a semi-decent color, I will buy it and put it back. With having a duplex, it always pays to have paint around. I ripped up the carpet, pulled up about 3000 staples, and scraped the decrepit foam off the stairs. I painted the stairway walls and laid new carpet. We moved and reorganized our CD cabinet and made one fabulous mess.

After I cleaned up our disaster, and swept the floors (with my wonderful new family addition), I had a wonderful new stairway. It was rewarding. I went from having a crappy, nasty embarrassing hall to a nice one in about 4 hours. Yay!

It is however well after 2:00 am and tomorrow my kids will be up with bells on wanting their Easter stash. . . I'm heading up my new steps to bed . . .

Do you like puppets? . . .

Well, it happened. I had to call the police on Dustin Saturday night. He has taken to running away from the house. It has happened about five or six times since October. The two worst times were with Robert. The times it has happened with me were minor and he came home after a few threats from me that I would have to call the police if he continued to run. I would love to let him run and not chase him at all, but I'm afraid and fairly certain that he would not choose to come back or run a couple blocks and get lost.

So Saturday night about 11:00 I am standing on the corner of our street in slippers asking, begging Dustin to come back to me. He kept running. If I dared make a move in his direction, he ran farther. I had my cell phone and called 911. The dispatcher was less than helpful. I told him where I was and what was happening and he said, "What do you expect the police to do." I informed him that I had a conversation with 2 different officers since this behavior began and both told me to call 911 and both chastised me for not calling prior times. I also told him that he is a 4 year old in a 13 year old body, so technically he should not be considered a runaway but a lost child and the fact he is mentally ill. He said, "Ma'am if you can see him how is he lost? Again, what do you expect us to do about this?" I answered, "Make sure my child is returned home safely." And he said something to the affect that that is not law enforcements job. I began crying and thanked him for his help and proceeded to hang up when he said, "Ma'am don't over react, take a deep breath, I never said I wouldn't help you". Just then a police officer pulled onto our block. He had notified officers all along. Why then did this dispatcher choose to hassle me?

When Dustin saw the car, he ran back to me immediately. He started crying and saying "Don't take me to kid jail." The officers were nothing but kind. They listened to me and chastised Dustin for running. They reiterated that we cannot keep him safe if he runs from the house. Then they gave him a puppet. Great. I know they were trying, but you just rewarded my son for running away. Sometimes it doesn't pay to play the "he's really a 4 year old" card. I sobbed and thanked the officers. I apologized for having to call. They both said that I did the right thing.

Why then did I feel so badly? We are going to be "that family" I just know it. . .

Has it sprung? . . .

Today we made our first trip to Lakeside Park of 2008. The kids were thrilled and Cayenne (the dog) nearly had a coronary wanting to run and play with every puppy around. They had a great time and are nice and tired. You will notice there are no pictures of Dustin because he wouldn't be still enough to take a picture, he found a 7 year old little bossy girl to play with. Her dad happened to be a special ed administrator at a local school system. It was nice to have someone understand that my big, lanky 13 year old want to play "babies" with his 7 year old little girl. He and Robert talked for some time. It was an all-around fun day! Yay spring. . . I hope. . .

Blessings . . .

My mom and stepdad are traveling to Florida. They left Fort Wayne yesterday morning. While they were traveling though Atlanta the weather got ominous and shortly after that a ton of emergency vehicles were barreling down I75. They happened to be going through Atlanta just as the tornado hit. Thank goodness they were okay. In fact, they were totally unaware until later when they heard the news today.

Another trip to the doctor . . .

Last night when I got back home I realized not only had McCartney not gotten any better, but she was really worse. The sinus infections has traveled to her lungs and now she has a horrific cough. That coupled with her asthma makes her sound terrible. We returned to the doctor this morning and found that she has RSV. Great. She was laying on the doctor's table, wrapped in a blankt when he came inot our room. She said, "Dr. D, you didn't make me better!" Poor baby.

So we are now armed with more medication, oral steroids, breathing treatments etc. Thankfully she does her nebulizer pretty well. I hope she makes a turn for the better soon. Daddy sure does not a break. . .

Yay for me . . .

Tonight I went to a parenting class for pregnant girls at risk and for new parents at risk at a local crisis pregnancy center called "A Hope Center". This place is a Christian based organization that strives to give at risk girls the skills and the support to choose to keep their child. I did a presentation about Fetal Alcohol Spectrum Disorders there last year at it was a disaster. A girl flipped out because I said something she found offensive. She started hollering at me and calling me ignorant. I cried. I am a comfortable public speaker and crying is not like me. She really upset me. I said I would never, ever do it again.

They have called several time since to schedule me. I have always said no. Last month I was sleeping on the couch and I got a phone call, I said yes because I was half asleep. Crap! I have not been looking forward to it at all. Tonight went great! I was so pleased with my presentation (thanks Kari) and I think they enjoyed it and learned a lot. I think I said "There is no safe amount of alcohol to drink during pregnancy" about 350 times. Only to be rivaled by "My child's brain damage was 100% preventable" which I said roughly 375 times. I will definitely do it again. I am determined to get the word out to women of child bearing age that it is NOT safe to drink while pregnant. Your child should be worth your abstinence from alcohol!

Before I left tonight, Dustin asked where I was going. Robert said, "Mom's going to talk to pregnant women." Dustin had no idea what I was going to talk about and he said, "Tell them NOT to drink alcohol, it made me foolish." It sent me out teary and determined to touch SOMEONE tonight that may choose not to take that drink with their child in the womb.

Worry wart . . .

Something new to worry about. Remember when McCartney was having issues with her legs hurting all the time. I took her to the doctor because she has Spina Biffida Occulta and I wanted to be sure she was fine. The pediatrician did some testing and sent us to the neurologist for a new MRI. Well, I called the peds office about the testing and the nurse said ti was fine. Today I took her to the docs for her illness over the weekend and it turns out the tests weren't fine at all.

McCarntey has an wonky ASO titer. Meaning she has elevated strep in her body. That is an issue that my mom and I both have and we get really nasty things associated with strep. When I was young I actually went into the early stages of kidney failure due to a strep infection. We both have had struggles with erythema nedosa and my mom has been told she will never completely rid her body of strep. Dr. Dillon is pretty concerned about this and thinks McCartney may have some post-streptococcal reactive arthritis. So, more blood work and something else for me to worry about . . .

Icky, sicky . . .

My baby girl is miserable. This is the child who was running round playing an hour after her tonsils were removed. The child who had numerous ear infections, so many that she had some hearing loss, yet we never knew because she never acted sick. She is laying around and sleeping like crazy (well, sleeping during the day, keeping me up at night)


She is taking tylenol and motrin to keep her raging fever at bay. She is also taking sudaphed to keep her nose from acting like a faucet (one with the nastiest, stickiest, green snot I have ever seen) and eye drops because she also has a terrible case of conjunctivitis. Nice.

Harrison has a small tinge of it, and is currently running a light fever and has goopy eyes as well. He is however running around like a maniac so I think he feels better than she does. He is usually the couch potato when he is sick.

Harrison gave me a very good laugh this morning when he came from downstairs with a pair of his jammies on that are too small. They are like those footie zip-up jammies, but don't have feet. He has grown so much over the past few months that the jammies legs are just below his knees. He looks utterly ridiculous. I laughed til I nearly fell over in the kitchen. He has always been really stubby so it is nice to see him sprouting up.

I'm off to wipe noses and hold children down for their eye drops . . .fun times . . .

My boy is growing up . . .

My kindergaren had his first big-boy birthday party yesterday. He went home with a boy from his class and went to a party WITHOUT me! I can't believe it. He was my baby just yesterday I swear.

Last night McCartney crawled in bedand snuggled up against me. She was burning up! She had a fever of 103.8. Zoinks. She kept complaining that her head hurt and no matter how I held her she cried about her back hurting. It worried me. I am not the crazy ER mom, but last night I was close. Finally the Tylenol kicked in, her fever subsided and she slept. This morning her fever is going back up and Harrison just came over to me on the couch and now he feels warm. I'm off to fetch the thermometer . . . send good thoughts our way. . .

My own version of crazy . . .

I am weird. Plain and simple. We have this little bureau in the foyer. Whenever I would tel the kids to go put something on this bureau they had no idea what I was talking about. So I named it. I call it Chester. Now when I say, "Go put it on Chester so we can take it to school" , they know what I mean. No explanations needed.

I decided I am going to name my newly acquired best-friend. . . uh, I mean vacuum. Any suggestions . . .

I thought about Mike, since it is a Dyson.

Maybe George because he "sucks".

Anyone? . . .

Woo-freakin-hoo . . .

I am a crazy vacuumer. I vacuum about 3-5 times a day. Partially because we have animals, partially because of the birds, partially because we have wood floors and rugs, but mostly because I'm OCD. Yesterday I bought a Dyson.

Is it wrong that I love my vacuum more than my husband?

Just kidding! I love you Robert, but I love my vacuum too!

Crappity, crap, crap, crap-o . . .

I hate snow! I'm sick of this crappin' snow. Last week's snow just melted and now I have 6-8 inches of snow in my yard. ARRRGGGGGHHHH!

You gotta have humor to get through . . .

The tide is . . .

. . . . turning? I hope so. Dustin had a super day at school yesterday and another decent one today. Not great, but we'll take what we get! Last night I was knee deep in a project and he was incredibly helpful. He loves to help around the house. He is the best gopher when I'm in the midst of something and it is really helpful. I hope this means he is returning to the kinda-rotten boy we know and love, not the one you'd like to strangle. . . Thanks for all your kind words on my whiney posts lately. You all are much appreciated.

I am looking forward to the primary results tonight. I sincerely hope that tonight will go well for Senator Obama and Senator Clinton will drop out. It sound to me like Bill may see that one coming. . . I am crossing my fingers and toes. I'm ready to get inot the meat of this election and see Obama and McCain begin focusing on the future, and one another.

I got a haircut and color today. It's it great when you walk out of the salon loving your hair! I love having a wonderful stylist who I trust completely. I always sit down and say, "Do what you want." and poof . . . I have a great cut! And at a super resonable price. Nice.

Ever since I started this post I've been singing this . . .

Sad . . .

I am incredibly off right now. Dustin has had an extremely difficult week and ended it with torture this weekend. He has been AWFUL. I'm not sure that many of you understand what awful can be . . . but I'm telling you it is not been fun. The little ones are on edge and grumpy because all of our attention and energy is wrapped up in keeping Dustin respectful and safe. Robert and I are snapping at one another because we are at our limit. The dog is even moping around. I have no one to turn to. I need a break. I just want to give up. . .

Another week will begin tomorrow and I will try to get through it without near as much turmoil. I am hoping that Dustin is struggling because he needs sunlight (the weather still sucks here) or becuase he needs some better sleep, or because he has a slight cold. I am not yet putting any stock in the thought that we may be dealing with medication issues. We have been on the same medications for a year an they have been wonderful. I CANNOT deal with the possibility that they may need changed right now. If I have to deal with that the way I feel this afternoon I may lose it. I'm not sure I can handle much more.

He takes so much energy. He takes a constant level of vigilance. I have to be "on" all the time. What I would really like is to climb under the covers, bury my head in a pillow and cry until about next Thursday. But I will stuff it down and pretend I am "good" for the kids. I will stuff it down and be a good wife. I will probably self-medicate and take extra Zoloft for a couple days. I don't have time or the luxury to lose it . . . it sucks being the mommy.

More art . . .

Harrison used to hate to do any kind of art. He didn't like to color or do anything like that. In kindergarten they began doing journaling and drawing pictures that go with their journal. They started talking about adding detail to their pictures and I began to see a little difference in his pictures. Since he started his medication (Focalin XR) we have seen FABULOUS results in his behavior, attention span and focus. It has actually helped his eating since he can focus long enough to focus on his food. I am so pleased he is doing well! He's like a new child experiencing things comfortably. I love it.

The one thing I have noticed immediately is his love for art. He draws and colors all the time. I love that his personality is becoming more balanced. Here is his latest drawing . . .

He calls this one Freddy the Flying Fish

Alone . . .

Kari blogged today about her fortune to be surrounded by people who understand her family and their children with FAS (Fetal Alcohol Syndrome). I was struck by the overwhelming aloneness I feel about living this life with Dustin.

One of the main reasons I started blogging was Robert nagged me. I really didn't think I had anything to say that people would want to read (and still not so sure I do), but the reason I continued was Kari. She found me one day and left me a message that we are not alone in this struggle with FAS. Through that post I found many other blogs of families like mine. IT held my attention. It furthered discussion of our own issues. It helps in a way nothing else has. It is my best therapy.

All that being said, we are wickedly alone. We have no Personal Care Attendants like they do in Minnesota and other states. We have no other families around us that we can talk with, fret with and help to support. We have no babysitter for Dustin other than my mother. No one else can deal with him. While Kari so fortunately "has people", we do not.

I say all this not to have a bunch of comments of sympathy. I say this to say that even though I feel alone becasue of FAS, I am certain others feel alone with children of differing disabilities. Reach out to someone. Email them. Comment on their blog. Give a mother an understanding look when she is fighting her kids in the grocery store. Let them know you understand, laugh with them.

Most importantly, look at them differently. It is so easy to assume the parents are at fault for a child who is behaving badly. . . give them the benefit of the doubt. Maybe they are on their last shred of patience. Maybe they want to chuck it all. Maybe they go home and cry because they are alone in their child's disability.

I know I do sometimes. . .