DanielDoo

What's going on?

2008-08-18T07:54:00.009-05:00

Here are some of the things that are happening in our neck of the woods.....; )

It has been really dry here, but the weather has been cooler so I have been able to get lots done. (or at least started) This is our creek. Ok, it is the creek bottom because there is no water. We need rain.

Every day you can find me out gathering clover and other yummy green treats for our girls. They are absolutely so spoiled that when they see me coming from the house they start yelling at me that it must be snack time. They love getting treats, but as you can see, some need bibs.

There is also the garden. We got it planted late and it was only supposed to be a test garden this year, but it is doing pretty well. Here are some of my cucumbers that will soon be pickles. The Okra is flowering and producing.

At the top of the stairs we had knocked a hole to be able to get larger items upstairs. I finally replaced part of the tongue and groove wood slats and have a temporary door put up. I will paint after I do a permanent door. I am considering taking out the rest of the drywall in the stairwell because I love this wood, it is just true to the house's age.

Back to the girls. We are up to about half of them laying so far, Yea! Notice there is not one chicken in the bottom nests. (Although they do use them) Up top, in the center, does that look crowded? Ok, there are three birds in the same nest. One on the bottom, one is facing the back with her butt sticking out and the other has her head sticking out the front. They are nuts.

Yesterday we found a mega-egg. That had to be one upset hen. Daniel was thrilled with it and had to have pictures taken.

I erected a post for my dinner bell. The concrete should be dry today and I will be able to hang the bell. I am excited about this.

I am pruning down the tree that I thought was dead, but obviously is not, for my bottle tree. It is coming along nicely.

Some of the tomatoes are turning red, soon we will be canning salsa and stewed tomatoes. Of course some of the green ones will still find their way into my frying pan, along with some of the okra. =) The cantaloupe is coming along nicely, with the promise of more to come.

I built a grass box for the girls, can you see it in the top of the picture? I will be planting wheat grass in it that will grow up through the wire. This will give them some treats they can't scratch up.

Sometimes I get to rest on the porch and watch the hummingbirds, take in the breeze and say hello to the turtle tree. Oh and hang in with my little bear.

I have also knocked a hole in Sarah's wall to connect her room with a closet. Once I broke out the sheetrock, I found that the wood underneath is really pretty. I think this one wall will lose it's drywall, get stained and varnished. It should be nice when done.

So, these are just some of the things going on around here. There are many more and maybe I will touch on some of them later. Exciting stuff, Redbud is really coming together. I hope that whatever is going on with you, that you are enjoying it to the fullest each and every day.

Things I have learned from my son....

2008-08-14T08:32:00.002-05:00

As parents, or adults, we have the daunting task of teaching children and those younger than us all the things they need to know to survive life. Ok, our goal is to actually teach them to conquer life not just survive it but sometimes all you can do is tread the surface. In order to fill this tall order we draw from our own experiences, our own instinct, OUR OWN everything. Now, if we are honestly wise we will temper this with a balance of us and them. That's right, we listen to what they are saying, what they are feeling, what they want and then our guidance for them will be more tailored to actually fit them and not just hang on them like a third generation hand me down.

With my oldest it took me a long time to realize that while we have many things in common, she is a totally different person than me. We share DNA, we are both girls, we even share some common experiences. When I guide her as a teenager I can think back to when I was her age to gain some perspective but while some things never change about high school, some things do. She is such a different teen than I ever was. She is smarter and wiser, she is more focused on her future, she is careful with her heart and she has support systems in place that I never had.

That first child is always our learning curve. Bless their hearts, they are our test rats in a way. We make so many mis-steps with them while trying to find the right path. So when that second one comes along we think we have this parenting/mentor thing down. This is when we realize that we still have so much to learn, life is funny that way.

From day one I was at a loss with Daniel. We did not bond right away and I had this paranoid feeling that I was not good enough to be his mom. Well, I tried to chalk that one up to hormones. He was a boy and I knew nothing about boys, what had I gotten myself into? Oh but I loved that beautiful baby enough for the both of us and we would figure it out. Then there was the whole sharing thing. With my first, her dad and I had seperated while I was still pregnant, I never had to share her. Daniel had a whole second family that wanted to be a part of his life, I wasn't sure how that worked either but I was thrilled that he had so much love around him. As time went on there were so many things that were different from his sister. He was self-scheduled, she was not. He had tummy troubles with everything, she did not. He walked and talked late, she was early at everything. He was a thumbsucker, easy going, had to have everything just so kind of a kid. She was not oral, but was very stubborn and more of a free spirit. You get the picture, right? Totally different kids. And the third one is a whole story of her own.

The one thing that all three of my kids have in common, other than they all own my heart, is that they are constantly teaching me something. Some lessons are intentional and others are purely by blessing. Here are some of the things that Daniel has taught me....

1. There is a blessing to be had in every thorn.
2. More than I ever wanted to know about Anime.
3. Even when we don't care if people are around us, we still need them.
4. Rules are important, only when they make sense.
5. If someone does not show emotion in there face, it does not mean that it does not still run deep within them.
6. The fourth dimension is about Tacos. (Really it is Time)
7. Love is not always shown by affection, sometimes it is simply shown by trust.
8. There are lots of things we need to ask God about when we meet Him.
9. It takes courage to face your fears but life gets so much better when you do.
10. Life is like a hologram, the most brilliant things appear when you look from a different point of view.

My Hero

2008-08-12T08:25:00.003-05:00

Blue has always had the best attitude about everything. He is easy going, gentle and charming. When it comes to Multiple Sclerosis there are times I am not sure if his good attitude is the result of a form of denial or acceptance. I know that he deals with a lot everyday, more than some, less than others. He doesn't complain unless it is really bad. He is my hero.

He is a man of few words and more often than not is wearing a smile. So it is easy sometimes to forget that his MS preys on his mind. He believes that he can "heal" himself with his mind. In some ways I believe him. He is doing so much better than expected for five years in and I think that a large part of that is his mental attitude towards the illness. When he gets new symptoms or has to go on new meds it is hard because I wait for the falter in his outlook. For a moment he gets disheartened or angry but it is soon replaced by a plan to move forward and be thankful.

The other day he asked me if he should get his Thyroid checked. He does not ask questions like this often so I was kind of taken off guard. I asked him why and he said maybe that is why he is so tired all of the time. He knows that it is the MS but he is desperately looking for it to be anything else so that maybe it is fixable. Personally I think it is a good idea for him to get it checked. His mother and sister both have AI diseases of the thyroid, Addison's and Graves disease. Looking through his reports, they have never checked his thyroid levels.

As his carepartner I want him to get his Thyroid tested but I know that his fatigue has been worse because MS and heat do not mix, this is August in the South after all. As his wife it breaks my heart to hear him desperate for other answers. I love this man so much and want so desperately to be able to take this illness for him. He does not deserve one day of what he has been given.

MS can be such an invisible disease unless you love that person. If someone new meets him, they may not know he has MS. They can't see the numbness, the pain, the fatigue, and they may not notice the stumbles here and there. They don't know that he suffers migraines when the MS is changing course. Because he is not a big talker they probably do not recognize the cognitive issues that flare up. They can not see the knots under his skin from all of the shots he takes to maintain his remaining abilities. They can't see the emotional loss caused by MS, such as losing the ability to play softball or guitar. The loss of being able to just go chase your kids through the yard. The difficulty in making the relationship with your spouse fit around symptoms and shots. The worry of the financial issues that come with chronic illness. They certainly don't see that huge sword over his head of not knowing if and when the next loss will come along and how big it will be. For those of us who can see it, we can tell you that it is scary to watch the progression and know where it is going. We can also tell you how much it makes us appreciate every single moment.

My big blue bear is courageous, strong, and wonderful. I am so blessed to have him as my best friend and my children are blessed to have him as their Daddy. He is a great role model for Daniel in dealing with his own chronic illness. Oh and did I say he is my hero?

The Appointment

2008-08-11T06:53:00.002-05:00

Daniel had an Endo appointment this past week. I never really dread these meetings anymore because A) we love the new doctor and B) we are pros at this thing now, right? However, that A1c number still feels like a report card for me and since the last visit we have really been focused on the whole Asperger's thing. Daniel doesn't really care one way or the other as long as their is no blood draw and he gets to go to the playroom.

For two months Diabetes has in large part been on auto-pilot. We have not logged as we should, we did the site changes and all the BG checks, but just sort of winged the results. He was getting more exercise because as part of our AS work he was spending more time outside. He already has a pretty good food choice thing going on, but without logging who knows. I was pretty nervous about the visit. I tried to throw together his logs the night before, using all four meters that have been in use everywhere and Zak, who saves me with his memory for insulin doses.

When I really realized how little attention we have been giving to diabetes over the last few months there was this mega wave of guilt. But, then I was blown away by thinking that a few years ago I would never have dreamed there would be a time that it would fall to the background like this. Don't get me wrong, it can still be overwhelming and if I give it enough brain power it would definitely still send me into tears in a heartbeat. However, even though I felt like we were taking a break from it a bit, Daniel did not.

Even though I was not logging, or following trends like usual, nothing had really changed for my son. He was still feeling it. He was still poking his finger the same, he was still going through site changes as normal. He never really got a break from any of it. He still had to make the dentist appointment and the eye appointment like normal. The highs, the lows, they still felt the same to him. OK, there is that guilt thing again.

Once the doctor checked him over so he could go play while we talked, I immediately started trying to explain that diabetes had been on the back burner for a while. She gave me a nod of understanding and then dug into the numbers. Then a strange thing happened. His A1c was 7.3! How in the world did that happen? That is right in line with with the numbers he usually has when we are beating our heads against the wall trying to stay on top of it all. The Dr. just simply said, "If that is being on the back burner then you guys need to come teach a class for us." Honestly, I don't think we could have ever gotten to this point if it had not been for the support of our friends in the CWD chatroom, where I have been absent for some time, and the awesome people here in the D-OC. We have learned so much from all of you, especially that the sky is not falling. Thank you.

At this point I had relaxed a bit, so when she started going over his logs it was like second nature in explaining the trends. "Yes he was running high for a few days but if you will notice it was just before school started and he was excited and nervous. If you will look at the days after school started you will see that he calmed down and so did his numbers." and "Oh, yes he has been waking up a bit on the high side as of late, this is, I believe, in part to the new schedule and because his hormones are starting to kick in. I wanted to give the school schedule a week to settle before making any adjustments." It was like we never took a break at all. Maybe it just felt like a break, I guess we really were still on top of it but now it just seems more natural. Almost four years in and we are finally able to "coast" now and again without the world coming to an end.

We discussed the CGMS and she is in total support of it. She thinks it would be a great tool for Daniel, even if only like a week a month, so we can see the nights and how his numbers and Asperger's affect each other. We will see what the insurance says. After all the drama with the difference in meters, I would love to see how they match up with the CGMS. I know that the numbers would be coming from different fluid and the CGMS is delayed compared to the meters but I think it would be interesting to see anyway.

I also asked about Symlin for children. Not that I want him to have to deal with anymore than he already is but I just don't get it. A person with Type 1, be they children or adults, is missing the same things from their pancreas. Insulin and Amylin, correct? If replacing both is beneficial to adults, why not children? I understand it would be more shots but if it can protect him long term, wouldn't that be worth it? The answer was that it simply has not been approved for kids yet, it takes much more testing to be approved for children than for adults. You would think that as money hungry as the Big Pharm is they would jump on this. I mean after all it is a whole new market group for them.

They won't give us a cure, they just keep coming up with new gadgets and meds that will make more money, but they make it impossible for everyone to have access to these items, I don't get it. Where is the big leap in understanding that preventative care and cures are a good thing? Maybe they have never heard their own children say things like, "I hate diabetes" or the worst one, "I hate my life."

So what we do is try to change Daniel's self talk, keep praying really hard for Dr. Faustman and her work, and take joy in the small victories like a good Endo appointment.

Eggs, Explorers, Excitement

2008-08-05T06:36:00.005-05:00

Saturday was a good day. Not only did a couple of our chickens start laying eggs, but we attended the JDRF Back to school event. The event was held this year at the Kids Science Adventure Center in Nashville. This place was way cool. The kids could start at the mouth and travel through the body to see what happens to food on it's journey through your system. There is a tower that is like five stories tall where the kids learn about all things Science. We even had the opportunity to experience the new Planetarium with a show about Stars. I was a bit concerned that Daniel would freak out during the show but he was so absorbed in it and had an awesome time.

The guest speaker this year was Mr. Will Cross. What an incredible inspiration this man is for all of us. Not only has he lived with Diabetes for 32 years without any apparent complications. He has also successfully climbed the highest peaks on all seven continents and been to both poles. The message in his presentation was although there will be some things that diabetes makes more complicated or even stops you from doing, to never let people tell you that you can't achieve your dreams, because you can.

After the presentation Mr. Cross was gracious enough to pose for a picture with our very own Danieldoo. For this mom it was a very touching moment. Here is a man who, with a crazy illness like diabetes, has been to the top and ends of the world, posing with my little guy who has a whole life in front of him to achieve just as much. Sometimes it feels as if diabetes and asperger's are and will be just as big of an obstacle for Daniel as those mountains have been for Mr. Cross. I am so thankful that there are role models out there to show our kids that they can achieve, they can stretch the limits, they will win.

So I would like to take this opportunity to say thank you to the JDRF for a great day for our family, thank you to Mr. Cross for being so gracious and inspiring, and thank you to Daniel's flock for starting his day with excitement.

Here are some pics from Saturday.....

Does Health Care Confuse You?

2008-08-04T07:41:00.002-05:00

There are so many things to know when it comes to taking care of ourselves that it can be overwhelming. The choices are endless, what with insurance, doctors, medicines, preventative care, etc. Should you take a natural approach? How do you know if the bill of goods you are being sold is for real or just another money making scam? This is all before we are actually faced with an actual illness. Then the pressure gets taken up a notch or two.

Recently I read a book called Stay Healthy, Live Longer, Spend Wisely by Davis Liu, M.D.. I was kind of skeptical at first because it was written by a doctor and let's face it, the days of being able to have a relationship with a doctor and being able to trust them sometimes seems to be dwindling. I was pleasantly surprised as to how informative this book really is. The author fills the book with tips and resources to help us really figure things out. He does not offer a solution to the troubled health care system, at this point one has to wonder if there even is a solution to be had. What he does do is explain things in an easy to understand format to help us sort out all the ins and outs of the system we have.

The book covers insurance and financial views of health care, doctor visits and how to make them count, preventative maintenance for our health, how to understand and check out your medical team, medications, the truth about what you really do or do not need, the future of our care, and how you should be in control. There are interesting facts sprinkled throughout the book and lots of resources to learn more.

While this is not a fun summer read, it is a necessary reference book that I learned a lot from and will keep on my shelf to refer back to. Those of us dealing with a chronic illness will find that you already knew a lot of the information from trial and error, but there are still some great nuggets of info waiting for you in this book. I liked the book from an experienced point of view but I also think it would be a great book to add to a young persons library as they start out on their own. Check it out and let me know what you think.

First Day

2008-08-01T06:41:00.002-05:00

I bet you can hear me let out a sigh around the world. This my friends is the first day of school for my kiddos. YEA! Ok, it is a half day, but I will so take it. Two months of non-stop noise has led me to this quiet moment. Well, I would here silence but Paul's computer over there sounds like a twin engine plane ready for take off.

It appears that this may be an incredibly awesome year for all the kids. Taylor is finally an upper classman, she has a new boyfriend, band camp went great, new band director that they all love, her job is going well, and she seems happy and focused. Sarah is in the Second grade, she is excited to get back to her friends, and she has set her goal of staying on Principal's list all year like last year. Then there is Daniel. I think it is going to be the best year ever for my boy.

I took him to the school yesterday to see his new classroom and meet his new teacher. This helped prepare him for today so we would not have an anxiety meltdown. I have to say that the teacher he has this year, seems to be perfectly matched for him on all counts. She has been teaching for 29 years and has seen it all. When I explained to her that Daniel lives with Type 1 and Asperger's she never skipped a beat. She immediately asked if he is on a pump, this is when Daniel introduced her to Zack. She is more than willing to help him keep records of his blood sugars for me and seems to know what is what with Type 1. As for the Asperger's, she has taught kids all over the spectrum and really seemed to click with Daniel. The way she runs her classroom will definitely help him move forward. She has a, and only allows, positive attitude and self talk. The kids will rotate desks randomly throughout the year so that they always are dealing with new partners, which will really be good for our boy. She teaches them all organizational skills, with color coding and the whole works. She will teach them all how at times you need to sit still but have a party in your head, which will be an awesome thing for Daniel. She told my little guy that every person in her classroom is special and asked did he know why he was special. She said that Angels kissed him on his way down from Heaven. I almost cried. She is high energy and patient. She totally gets his needs. The most important part is that he loves her. The classroom will only have 16 kids in there this year, much better than the 32 last year. Not as noisy and crowded. Both of Daniel's friends are in his class, he made sure to ask. All in all, I think it will be a great year for him.

Yes, when that big yellow bus pulled up this morning, I was one relaxed, happy mama.

Must See Forum

2008-07-23T10:44:00.002-05:00

My little blue bear is at it again. He has started a forum for anyone touched by illness. You can find it HERE and I will add it in my sidebar for future reference. He is so very proud of this forum so if you could go stop by and say hi to him it would make him extremely happy.

Please remember that he is 10 and quirky. I will be keeping an eye on the site but it is all his. ; )

Thank you.

School countdown/Radio Autism Battle

2008-07-22T09:01:00.003-05:00

In 10 days my kids will be heading back to school. Yes, I am counting down the days on my trusty calendar. While the thought of some quiet in this house is appealing, I have to say the anxiety is creeping in.
I am not so worried about Taylor. She is a Junior this year and she has everything pretty much under control. This week is band camp with thirteen hour days, she is in heaven. She got her class schedule yesterday and she is happy with it. Her job is going well. She has a new boyfriend which is a blessing, even though they are on my bad side right now. This should be a good year for her.
Sarah is excited to get back to school and her friends. She is a great student and loves to learn, the only thing about her is she is a chatterbox. Maybe she can keep her social butterfly personality confined to recess this year. Ok, I really don't think that is going to happen at all. She is a Second grader this year and I think she will have a great year as well.
My anxiety is for Daniel. He is a Fifth grader this year and even though we have been dealing with the diabetes for several school years, it still feels like starting over each year. Then there is all the stuff that comes along with the Asperger's. His IEP should still be in place to start the year and he will continue with the Speech Therapy and the Occupational Therapist will still be helping us. I need to update his 504 for the diabetes part and try to get it signed this year. We need to schedule a time before school starts for him to go in and see his new classroom and get a feel for how his days will be set up. I know it will all fall into place but for some reason I still get nervous at the start of a new school year.
He has done so well this summer but of course his days were wrapped around his own schedule for the most part. Soon that will change and he will have less control and it will all start up again. He doesn't go to his Endo appointment until the 6th so I am sure I need to get orders faxed before then. We need to get all of his picture schedules updated and try to start some sort of routine now so he will be ready when school does start. We will get there, it will be a great year.

________________________________

On another note: There has been quite a craze going on about the radio personality Michael Savage. Parents of Autistic children everywhere are up in arms and in a fit to get him fired for his recent comments about Autism. My view on this is that I can see both sides. Do I want him fired? No. Do I think he has a right to his opinion? Yes. Do I think his opinion is right? Yes and I think that it was misunderstood in a sense. Do I understand why the parents are upset? Yes, I do.
It is difficult when you are as emotionally invested in an issue as parents are with things like ASD. When someone makes a statement saying anything that hints your child's issues are not a medical condition but instead a discipline issue, it hits a lot of nerves. All of the conditions on the spectrum of Autism are hard to wrap your brain around. If your child has a tumor, you can see it. If your child has a broken arm, you can see it. If your child has had their feelings hurt, you can understand it. If your child is scared of the dark, you can relate to that fear. But when your child's brain is wired in a very different way, it is hard to grasp because we can't relate. When you can't relate it opens up the floodgates to second guessing yourself and the insecurities of your parenting skills. That is all above and beyond the amount of drain on your emotions and physical being when dealing with a child on the spectrum. Oh and not to mention the financial and family issues that also come into play.
Mr. Savage is clearly concerned that the medical community has an agenda with the number of people, kids and adults alike, that are being diagnosed with Autism. If we are honest here, we know this sort of thing happens all the time and it is usually dollar influenced. He is also concerned with the amount of drugs and the age at which they are being prescribed for these kids. We should all be concerned with this one. Mr. Savage is also concerned about how the number of people diagnosed with Autism affects those on the lower end of the spectrum. This too is a valid point. The desensitization that occurs when so many issues are lumped into one illness family can do more damage than good. It starts out with the idea that the more people in one pool, the more attention and funding it will draw. As we have seen with diabetes, it often times just brings about a battle of which illness is more important or the question of "well, aren't they all the same disease?", which is not beneficial for anyone.
My son has Asperger's Syndrome. Do I think this is a real condition? Yes, I live with this child and can tell you that it is very real. He has essentially been diagnosed twice by two different teams of medical professionals that specialize in psychiatry and Autism. Do I think he needs to be medicated? As with anything else, Asperger's can be unique to the individual. At this time and with the combination of symptoms that Daniel has, it is not my opinion that he needs meds. What he needs is lots of help and attention to learn or relearn things that come naturally to others. He needs Behavioral Therapy to learn alternatives to some of his behaviors. He needs Speech Therapy to teach him the intricacies of language and social situations. He needs Occupational Therapy to both help him with easier ways to handle tasks and to help him build the weaker motor skills that come along with this condition. He needs me to be a patient and loving parent and his family to be there to support him when he hits a road block or to understand that it is not only ok but fabulous that he has a different approach to life than we do.
As a parent of a child on the spectrum, it does bother me when people pick out one or two things that Daniel does and say "He is fine, most kids go through similar phases." or, "He just needs more discipline and he would be fine." Yes, I know a lot of kids throw a tantrum now and again. If you think a child with ASD throws "normal" tantrums, then you my friend have never witnessed a "true" meltdown. Yes, I know that kids have fears of the dark or of the boogie man. The fears that ASD kids have are more intense, sometimes do not make sense, and can be debilitating. Some kids don't like to eat certain foods and can be picky eaters. Kids with ASD can have extra sensitive senses which cause certain tastes, textures, lights, sounds or smells to make them physically ill or agitated. My point is that when kids are on the upper end of the spectrum and at first glance seem to be like any other kid, doesn't mean they are. When kids are on the lower end of the spectrum and can not carry on a relationship with you in the way most kids would, does not mean that they are ignorant or have nothing to say to the world.
Every child is unique, a special gift to this world. Every child has wonderful talents and incredible views to enhance our lives. It is our job to protect them, nurture them and meet their needs so they can grow into the person they are meant to be. This does not mean that we get to choose who they are to become, that is already decided for the most part. No child is born with the ability to raise themselves. Some children come with extra challenges, maybe it is a chronic illness, maybe it is a mental condition or maybe it is in the form of a gifted talent. However these children are gifted to us, it is our responsibility to step up and guide them, no matter how tough that can get. It is never ok to blindly medicate children so that our lives are easier. (I have seen this happen) It is never ok to manipulate a diagnosis in order to use our children to gain something. (This happens more often than you would think) And it is never ok for the medical or pharmaceutical companies to use our children as bait to attract the cash cow.
So, if you know a family dealing with a diagnosis of ASD please support them. It may not always be clear to you from the outside what is really happening but trust me it is challenging. If you are a family facing the diagnosis of ASD, don't be afraid of a second opinion. For everyone who has a child or loves a child, question all medications for necessity and safety. Do your research before you trust someone just because they where a white lab coat. If these people really do have the child's best interest and welfare at heart, they won't mind the questions. These are our children and we must protect them and give them every opportunity for the best life possible. In my opinion this is what both sides really want in the battle between ASD parents and Mr. Savage. Support for those that need it, protection for all, and for those trying to do harm, of any kind, to be brought to justice.

Checking In

2008-07-17T07:17:00.002-05:00

My friends, I miss you. There is so much I want to write about but lately when I can find a few minutes to sit down I find myself too wore out to even think clearly. Don't get me wrong, life is good, just really busy. Some of the things going on: Family, chores, yard work, gardening, chickens, dogs, a trip to The Hermitage, dentist appointments, purchase of a new refrigerator, the death of a neighbor, anger over a local case of eminent domain, my oldest and her new boyfriend, Daniel and his non stop talking about games and forums, my youngest and her ever growing girl attitude, serious pain in my hands and knees, the start of the marching season, the start of school being only a couple of weeks away, oh it just goes on and on and on. I can not wait to get back here and chat with all of you and catch up. But you know what they say, you have to make hay while the sun is shining, or something like that.

Meters! They LIE!!

2008-07-03T23:14:00.002-05:00

I know we have had this discussion before but I am having a freaking out emotional moment and need to talk to you guys about this. What am I talking about? Meterphobia! How do we believe these meters? What is really going on in my son's body? Honestly, I am freaked right the heck out right now.

DEEP BREATH! *Sigh*

Ok, here is the lowdown. If you remember a while back, Daniel was doing the three meter testing. He had been using the OneTouch Mini and liked it, then Albert sent us the Keynote to try out, then almost at the same time the OneTouch UltraLink showed up. We decided the Mini would be the base meter since that is what we had been basing his insulin ratios on. Daniel really liked the Keynote but the UltraLink won his heart because he is a little techie freak and it talks to his pump. Eventually he began using the UltraLink exclusively. Every now and again I could talk him into doing a double test with the Keynote and he would remember that he likes it.

Tonight at dinner he was 289. He bolused for his meal and later felt low. Tested and he was 69. He ate some glucose tabs. 30 minutes later he still felt low, tested with his UltraLink, as before, and he was 166. He threw a fit because he said it could not be right, he felt really low. He retested with the Keynote and it said he was 49. My head almost exploded. I immediately did the test with the solution on both meters and both say they are accurate. Really? That is a difference of 117 points!! So when the UltraLink had said earlier that he was 69, what was he really? Like 2?! I am assuming here that the Keynote was more accurate based on how he felt.

That is freakin scarey, especially since he had a late dinner and this was all going on at bedtime. He does not wake up to lows. If he had been asleep and we had just tested him with the UltraLink, we would not have known he was really low. Remember, he was 49 after eating glucose tabs. We trust these little machines to tell us the truth. When they lie to us, someone could die.

12 Great Years

2008-06-29T15:19:00.003-05:00

Blue and I celebrated our 12th wedding anniversary on the 15th. Well, we didn't really get to celebrate because it was Father's day and we had company. We did finally go to dinner yesterday, Taylor gave us a gift certificate to Red Lobster. It was nice to get out, just the two of us. The quiet was almost too much for me to handle. lol How enjoyable to be able to have a whole conversation without being interrupted by kids or just having kids underfoot.

It is so cool to have my best friend also be the person I will share the rest of my life with. With everything that has happened in the last 12 years, it is still the best years of my life so far. I am blessed to have such a wonderful partner and I look forward to the next few decades with him.

Thank you Big Blue for being such an awesome person. You are the best bear ever!!

Stop Digging Day

2008-06-25T12:53:00.003-05:00

Today is my birthday. These are the days that make you take stock of things. As I look around at my family and my life, I realize that I would never have dreamed I would be where I am but now I couldn't dream of anything else. Don't get me wrong, there are days that test us, but everyone has those. Those days are also matched or outnumbered by incredible days that are full of blessings.

There was a time when I wondered why some people seem to lead charmed lives while tar is poured all over other's lives. With my age has come the wisdom to know that things are not always what they appear. Everyone is touched by good and bad, the difference is all in how we react to these things. Sometimes when we react badly we start a chain of events, you know, digging the hole deeper. When we rise to the occasion and try to see the positives in our situations, well, this is when we refuse to pick up the shovel at all.

I am definitely guilty of digging but I am getting better at remembering to lay the shovel down and look around me. To focus on the hole is to feel alone and helpless. When you stop and look around at all the other people with shovels in hand, you remember you are not alone and that is when you start realizing there must be an answer for us all, outside of the hole.

Sometimes my hole is that my husband has MS. When I look around I know that we are not alone and that the wonderful thing is he is still with me. He may have bad days but he is still the center of our family, we still benefit from who he is. His love and personality is stronger than any illness.

There are days my hole is Daniel's diabetes. Looking around the D-OC reminds me that it is a cycle we are all caught up in. Today may be trying and frustrating but tomorrow could be a day of numbers inside the box, finding a new low carb treat, or a great A1c. I look at the hole and cry, worried about my son's future and the challenges diabetes will have for him until there is a cure. But when I look up from that hole at all the wonderful PWDs we have gotten to know, it brings a smile to my heart. Challenges be damned, my son can and will have a wonderful life just like so many before him.

My hole at times comes in the form of Autism. This one is tricky. I was digging my hole when the diagnosis came along and made me put down my shovel. Weird right? It felt like someone came along and filled the hole in for our family. I still pick up that shovel when new issues come along but when I remember to drop it is the only time I can learn new ways to address those issues. Asperger's may be another thing that challenges our boy for the rest of his life but it does not threaten to take his life. Again, Daniel is strong and has the support system he needs to live his wonderful life and achieve everything he can dream.

I dig when I feel my girls are lost in all of the chaos that is a multiple chronic illness household. They remind me gently, sometimes not so gently, that I need to use my energy not to dig but instead on them. Living with all of the health stuff can feel like tar, but it is more like glue. It pulls us closer, makes us more honest with one another, gives my family empathy and compassion that so many people are missing. My girls are not lost in all of this, they are learning valuable lessons for the future. They are becoming stronger, more caring, less selfish, they are preparing for their individual purpose in life. It is not an easy road they are on, definitely tough for a teenager, but this is where we grow our ability to have faith. Faith that it is for a reason and will all have been worth it. Maybe they are learning early on that it is more productive to just not dig.

My birthday wish this year is not for a cure, although that would be wonderful. No, my wish this year is that all of us will put down our shovels, reach out to each other and find the beauty in our everyday lives. We can do this, just simply stop digging.

Goodbye Mr. Kalitta

2008-06-21T23:36:00.002-05:00

I just learned of the death of Scott Kalitta. I met him and his family at Bandimere in Colorado back when Scott drove Top Fuel dragsters. What a nice family. His dad, Connie, has always been involved in the race circuit in one way or another and he was so proud of his boy.

Scott died in a hospital in New Jersey after his funny car burst into flames and crashed at the Old Bridge Township Raceway Park. He was estimated to be traveling at around 300 mph. Our thoughts and prayers go out to his family. This is a loss not only for his beautiful family but for the racing world as well.

No fear in life, or in death.

Bear Tales

2008-06-19T09:21:00.004-05:00

My MIL and SIL left to go back home on Tuesday and I think I may be getting caught up on my sleep at this point. =) We were up until 3 am almost every night playing Gin Rummy and the one rule is that no one is family during a game. It can get pretty cut throat. LOL We really enjoyed their visit, as always, and can not wait until the next time they come to see us.

I was worried about how Daniel would do during the visit but he did incredibly well. I think the fact that this time he had his schedules and chore chart really helped things stay somewhat normal. Since our company has left he has been having issues keeping his emotions in check. He seems easily annoyed and goes off on Sarah quite a bit. Maybe it is just a form of release from trying to readjust but he is working hard to catch it before it gets that far and escape to his room for some re-focus time.

Blue is doing well these days. A visit from his Mom was good for him. He was home for a week while they were here so we kept the house closed up with the AC on. I am so glad that he is back at work so I can open it up and get the fresh air flowing. =) It is considerably cooler this week so he is helping in the garden without it knocking him for a loop. The spasticity seems to be worse lately but maybe that is because he has been so much more active, I don't know for sure. One day while out on his lawn tractor he was bit by a spider, we are not sure what kind, but thankfully it seems to be healing well. The good part is it was on his knee on the numb leg so he was not in pain.

Taylor. Oh we are struggling so much right now. She was contacted by the family of her biological father and it really bothered her. She politely told them that she does not know him nor does she have any desire to know him at this point. She felt stalked and also was afraid that it would hurt Blue. We reassured her that it is ok, Blue loves her and knows that she loves him. Her friends are all going on vacations and getting material things so she is feeling a bit out of sorts. It is tough being a teenager. Her boyfriend is gone for the summer which doesn't help either. We have been fighting like cats and dogs but I think in the end it will help us air some things out. I hate fighting with her but I know it is just part of the process and sooner or later it will be ok.

Sarah is enjoying her summer. She is up under everybody's feet, all of the time. Taylor spent some time with her the other day and turned her into a mini her. Here is a couple of pictures:

When it is all said and done, life is good here at Redbud. We are growing, learning and loving which is what it is all about. Well, I am off to pack a care box to send to my daddy for his birthday. Sunday will be his big 6-0! (Oh and for the record he is referred to around here as either Papa Bear or Baloo.)

Come talk to me on the radio....

2008-06-17T11:24:00.003-05:00

Whew! I have been wanting to get this post done earlier than now but we had company until this morning. (More about that later) Today I will be a guest on the internet radio show Winning Life Through Pain at 1:00 Central. I hope you can all listen to the show and call in, I would love to talk to you. The call in number is (347) 324-5661, all the info is on the site.

The host of the show is this amazing woman, Coach Marla. She lives with RSD (Reflex Sympathetic Dystrophy), MS (Multiple Sclerosis), Osteoporosis and Fibromyalgia. She is very inspirational in that she lives with all of these conditions while carrying such a positive and caring attitude. She is one of those people that touches lives and you feel like a better person for knowing her.

She has recently added my friend Chris as one of her co-host. I have written a couple of times about his book, Life Interrupted, It's Not All About Me. Chris has lived with MS for 28 years and he, through many trials and errors, has learned how to not let a chronic illness kill your spirit or your relationships. He and his wife Jane are incredible people who have a way of blessing those around them.

So, please try to stop by and call in today during the show. If you miss it for some reason, you can catch her show every Tuesday. Coach Marla always has great topics and guests that are interesting and educational.

Things that work are good.

2008-06-09T19:13:00.002-05:00

That feeling you get when you find something that works is incredible. Folks, it is the little things in life that are the most rewarding and that is truth. We finally found a toothpaste that Daniel likes! I know it does not sound like a big deal, but trust me, if you had been a fly on the wall all this time when it was time to brush teeth you would be popping confetti with us right now.

We are now focusing on the sleep thing. Of course everything we do for Daniel in terms of charts and rewards has to be duplicated for Sarah. She is such an even stevens kind of girl. What we have been doing is this: We put printouts of stop signs on the inside of the bedroom doors. This reminds them that when they get out of bed in the night to stop and remember to go lay back down. They each have a bedtime pass that they receive at bedtime each night. If they get up in the night and leave their rooms I get the pass. Of course we have had to make some exceptions, they get one free bathroom trip because of Sarah's bladder and Daniel's diabetes. Also, if it is diabetes related it does not count against him. If they still have the pass in the morning they receive a sticker on the calendar that is worth .20 cents. They can cash it in at the end of the month or keep letting it build until there is something they want to buy. So far this has worked pretty well. We are trying a new thing for sleep issues now. Daniel will be sleeping in a sleeping bag. The deep pressure, tactile input a sleeping bag gives him, will allow his nervous system to relax. I so hope it works.

Next we will try aromatherapy. He can smell things I can't, or the odors are stronger to him than they are to the rest of us and sometimes this makes him sick to his stomach. It is not as bad lately in the house because we are keeping it closed up with the AC on due to hubby's MS, but it is still bad in the van when it is hot outside and the van has been closed up. I also want to try the essential oils that are supposed to help with focus. During school he would lose his place during class. We believe that it was due in part to the fact the class was large and loud. He trained himself to block out everything which leads him to get lost in his head. Next year his class will be split in half so it should be better but if there is a scent that will help him readjust to paying attention, it is worth a try.

I am still at a loss as to how to deal with his fears. He worries about things all the time but most of the time we don't know until it has him worked into a frenzy. The other night he told me that he just doesn't know how he will ever live on his own. Ok, he is 10, not something he should be worried about just yet. I asked him if he was going to live with me forever and I got a quick "NO" as the answer. He said that with his fears of the dark, being alone, etc. and his diabetes he doesn't know how he is going to do it. I assured him we would work on it all and have him ready when the time comes. I hope I can hold up my end of the deal. He so deserves a good start in life.

We adapted his chore/behavior charts for the summer and he and Sarah are both doing well with them. It is good to keep him in the habit so that when school starts back up it will be an easy transition. It is also good to get lots of help around here without arguments or the rolling of the eyes. =)

His grandmother and aunt are coming this week for a visit. They will be here for a week. We are all excited about the visit but I am a bit anxious too. These things throw his days off and we always end up with meltdowns. I guess it will be a good chance to address some of those emotional recognition items. The learning just keeps on chugging.

Sarah is attending VBS this week, she is having a blast. It was so weird to just let her go with her friends and not be there. It is not easy to switch gears between Daniel and Sarah. I am so used to having to be with him, it is surreal to be able to send her somewhere and not have to worry about diabetes or autism or well, anything. I am so happy for her and glad that she can just be a kid. Daniel can just be a kid, it just takes so much more effort to make it happen. I am trying to figure out how to come up with $1000.00 to let him attend Tech Camp next summer. That would make his world explode with joy, so I have to find a way.

Onward and Upward.

Happy Birthday Blue!

2008-06-05T18:20:00.002-05:00

Today is Big Blue's birthday, so I thought I would write a post about him.

My Blue, or Sparky as I sometimes call him, is the most wonderful man I have ever known. While birthdays were meant to mark the day a person is born, this day marks so much more. June 5, 1971 the world became a better place through the birth of a baby boy that would grow up to touch many lives in such a positive way. I can not think of one single person that has ever met my Blue that has not loved him.

Most people think he is quiet and sweet spirited. They have the sweet spirited part right, and I guess he does not talk a lot, but he has this bubbly personality that is just goofy and fun. When we first met, I had forgotten how to laugh. (Seriously) He taught me joy again. He quickly became my very best friend ever and even though I was not looking for love, I definitely found it. I enjoy his company so much and feel blessed every day just for knowing him.

This man is loyal, honest, caring, and such fun. He is the most understanding, loving husband and an incredible dad. He always has a smile. He shows such grace living with MS. (Not grace as in graceful, because even he understands that people falling down is funny, even when it is you.) To sum it all up, I love him and he is my hero. I am looking forward to spending many more years with my beautiful man.

Happy Birthday Blue!

Let Summer Begin

2008-05-22T13:09:00.006-05:00

My kids are officially out of school for the summer. I already feel more at ease having them home. I don't have to worry that if I go outside I will miss an important email or phone call about Daniel. I have not blogged much in the past couple of weeks just because it gets so crazy at the end of school. I am ready to give you a brief run down on what has been going on around here.

Daniel had a field trip, kind of an end of the year reward, to go bowling. I think his teacher was really glad I came along, it meant she got to relax and enjoy the event too. =) We averted a meltdown over someone taking the perfect ball and we chased off a stinky low, but overall, he had a blast.

Sometimes bowling doesn't go like you want....

But sometimes it does.

Then, Taylor had a band banquet that we all attended.

The school provided the meat and rolls and the rest was potluck from the band families. Potluck in the South can be a beautiful thing.

My blue bears enjoyed the food and fellowship.

Sarah was just trying to get to the dessert portion of the meal.

Taylor and her fellow Bandies enjoyed the evening. It was sad saying goodbye to the Seniors but they will be forever connected.

Next, Miss Sarah had a field trip. The kids that had the highest total points in their reading program were treated to a day at a fun center.

There were bumper boats that squirt water.

Go Karts.

And put put golf.

That sometimes turns into a team sport.

Sarah had her final coach pitch game of the season. Her team won and they had tons of fun.

She received her first trophy ever and she was on top of the world.

There was graduation that the band played for. One of the girls in this class died a couple of years ago in a car accident so all the seniors pitched in to buy her cap and gown. They placed it on a chair in the back and included her in the speeches made that night. It was very special.

We finished the chicken's run. You can see pics over on their BLOG.

Taylor started her first job, she now works fast food. She also had her tryouts for drum major. She did not get it this time. She was trained in more of a disciplined military style and apparently the judges were looking for theatrical. It was a tough loss for her because she is good and is passionate about it. She has decided she will be marching next year playing the Mellophone instead of woodwinds.

Sarah received a trophy for staying on the principal's list all year with straight A's. She was very proud of herself.

Daniel finally made it through a semester without going over his demerit level. He earned a video game by ending the year with two demerits to spare. I know that he worked hard to accomplish this and I am very proud of him.

So we say welcome to summer and all the adventures it will bring.

My 10 Things

2008-05-21T06:46:00.002-05:00

I was tagged by Cara over at Every Day Every Hour Every Minute. I am a little late in getting this done so while the rules say I must tag six people, I think every one has already been there done that. The idea is to write ten weird things about yourself. If you have not been tagged and want to play, please leave me a comment so I know to go check it out.

This is kind of hard because I am a bit of an odd bird anyway, so what is normal and what is quirky? The parts of me that are not odd are kind of boring. Well, here goes nothing...=)

1. I spent the majority of my life trying to get out of a small town and be somebody. I finally realized that being part of a small town and raising my family with the values and lessons of my past generations is what I was meant to do.

2. I have a rediculous need to research things.

3. I have no real talents to speak of but I am surrounded by very talented people.

4. Pack Rat is a term that used to describe me but since multiple health issues have entered our house I have turned into a person who streamlines. I still hold on to memory tubs for the kids and of course family history items.

5. There are several issues I should go to the doctor for but no matter what I can not seem to make myself find a doctor to visit and go.

6. Blue and I are slowly but surely building Redbud up to be a working hobby farm. Our next addition will be my favorite, goats. No matter what, they make me smile.

7. I have 17 Aunts and Uncles (not including spouses) which gives me around 50 first cousins. We have no family living anywhere near us. I secretly dream of having a family ranch where my kids could grow up surrounded by our loved ones, but it will never happen.

8. There was a time that I was a very social person. Now, other than Blue, all of my friends are in this magical box we call a computer.

9. I have a notebook full of inspirational quotes and words of advice that I will hand down to my kids. I also have a bible that I highlight passages and write notes in to pass on as well.

10. When I was in high school I never saw myself living past 20. I never saw myself being a mother. Now I have three beautiful children and married to my best friend, the greatest man I have ever known. I am absolutely blissful and I hope that others that have lost hope can realize that your world can turn around and be something you never ever dreamed.

Springing the past forward.

2008-05-09T07:14:00.002-05:00

I love spring time. I love the warm nights and the smell of the rain and wet dirt. Waking up to the incredible green scenery every morning is a revitalizing way to start the day. The sounds of the birds in the morning and sitting on the porch in early evening watching the bats perform their aerial dance with such grace and such purpose, these are healing moments. Teaching my children how to identify the beautiful birds that visit our feeder daily is so rewarding. At last count we have identified 19 different kinds of birds on our property and two more in a nearby field and creek.

Working on our "Family Roots" yard project has been a fun and meaningful journey. It will likely be an ongoing project for many years but we have really gotten off to a great start with it. We have planted or placed thirteen different types of plants or decor items in honor of loved ones so far, with many more to come. This summer, when the kids are out of school, we will be making path stones and markers to chronicle the items. I have also started a journal that will explain the meaning behind each item and a bit of a backstory about the person being honored. I am hoping it is something that will be passed down and in some way will keep these wonderful people's stories alive for generations.

A couple of examples of our project are the Blue Moon Hydrangeas and the Red Hens & Chicks. The Hydrangeas were chosen by my husband's aunt. When she was a little girl growing up in Holland her Oma had beautiful blue Hydrangeas in her garden, this has always been a fond memory for her. I planted three of these bushes, one in honor of her Oma (or my husband's great-grandmother), one for her (my husband's aunt) and one for the new generation. All those years ago, Mrs. Heuberger made a decision to plant these beautiful bushes in her garden, not knowing that three generations later, half way around the world, similar plants would be placed into the earth as a reminder of her and those she has touched. I only hope that the ones in my garden have the same affect on my kids or my grandchildren.

The Red Hens & Chicks are for my Aunt. The Red color reminds me of the Oklahoma ties that bind us. The land that she lives on and has raised her family on, including me here and there, was attained by her husband's family in the Oklahoma Land Run. Over the years, she and her husband not only raised their own house full of kids but they also took in over 100 foster kids. Since her husband's death she has continued spreading the love and care for kids on her own. She is a mother hen who always has been and always will be surrounded by baby chicks to care for. Now when I see these succulents in my garden and I watch them multiply and grow stronger with numbers, I think about her and her strength. I think about how many lives she has not only touched but changed and made better just because she is an incredible Mom.

Yes, spring is full of new life and new promise. Raising the chicks, teaching the kids how to care for them and now preparing for goats, these things offer so many teachable moments. Planning a garden, deciding as a family what should be planted and later preparing the food for storage, such as freezing or canning, can be a chance for the kids to buy into our vision while learning important skills. Once we get past all of the end of school activities we will be able to really focus on having some fun here on our little hobby farm and hopefully grow closer by combining the past with the present while working toward our future.

The Good and The Bad = Balance

2008-05-05T12:27:00.005-05:00

My last post sounded like I want only the bad parts of diabetes to be shouted from the roof tops. You know what? Some days I do. Now, I started this year saying that I was going to be more positive and try to be more beneficial. For the most part I think I have stayed on track but sometimes being real, even if it is negative, can be beneficial too.

I find myself at that crossroad lately, you know, if my life were on a GPS the bell would be going off telling me to choose a road. I want to be positive, I want to hide all the bad stuff from my family, I want to only talk about the blessings and to post pictures only from the mountain tops. Reality forces me to know that to have blessings, to get to the mountain top, to be positive, I must travel those icky roads of thorns, steep inclines and disappointments.

If I am reading blogs, looking for that validation that I am not alone, the happy go lucky, always up people can't do that for me. It is the ones that tell their real life story that I can connect with. Don't get me wrong, I refuse to always be gloom and doom, but my real life story is full of MS, Type 1, Asperger's, teen struggles and a little girl trying to get the attention she deserves. We have lots of good and joy in our lives. We have lots of love and smiles to share. Sometimes though I have to share the frustration and tears too.

Going to a minor league baseball game with my family is a joyful thing. All the preperation to get there is a pain in the hiney. Enjoying a burger at the park with your kids is a fun thing. Having to have the discussion with your son as to why he cannot have cotton candy is heart breaking.

Sitting in the car for a while after getting there while Daniel has a major meltdown because of anxiety and being overwhelmed, not so good. But him being able to go inside, even if that means hiding in mom's jacket for a while until he gets his balance, is a good thing.

Still being able to go to events with my husband is a wonderful thing. Even when we have to leave early, which can be a difficult thing.

Having a teenager that will still be seen with us in public is an incredible thing. But sometimes having a teenager is a challenge in itself.

Still having a child that can be happy in the moment and sit on mom's lap is beautiful. Knowing I don't give her as much lap time as she would like is a guilt inducing thing.

Daniel making friends at the ballpark is a proud moment. The fact that he would only talk to them through the DS is a reminder that we have a long way to go.

Finishing the chicken house is a fulfilling thing. Knowing what it did to my hubby to work so hard is a sobering thing.

Moving the chickens into their new home as a family is a moment that gives you warm fuzzies. No negatives here. =)

Watching my kids play with the chicks and make sure they are happy and taken care of is priceless.

A New Member

2008-05-02T08:50:00.003-05:00

I just had to take a moment out of this busy day to write about a new member in the Type 1 world. As you all know we moved here to TN from CO a few years ago. You also are probably aware that I am a huge fan of college football. While my football loyalty is with the OU Sooners and my husband has his connections to Auburn and Notre Dame, we found ourselves pulling for Vanderbilt. Partly because that University is where both my guys are treated for their health issues and in large part because they are such underdogs. They had a shining season when they were led by quarterback Jay Cutler and it was exciting. Cutler went on to be drafted by the Denver Broncos and we found ourselves both proud for him and kind of felt that weird connection to him. (No, not stalkerish weird connection)

Now we have even more of a connection to Mr. Jay Cutler. He has been diagnosed with Type 1 diabetes at the age of 25. You can read the article HERE. As the article says, this disease is manageable. Sort of. He can still have an outstanding career. But they don't say how he will have to work ten times harder now that he not only has to foster all of the plays and thinking that goes with being a quarterback but also all of the 24/7 mental fatigue of Type 1. He is the quarterback of a team that still holds everyone in comparison to John Elway. That is a lot of pressure, especially for someone so young. Now he will have so much more pressure trying to prove to his body, as well as everyone else, that this illness will not stop him from being the athlete he is meant to be. Just once I would like to read an article like this one that tells the truth, and nothing but the truth. I think it would go something like this:

Denver Broncos quarterback Jay Cutler recently received a blow to the gut with the diagnosis of Type 1 diabetes. Cutler who is 25 years old will spend every day for the rest of his life being his own surrogate pancreas. His new role will require injecting insulin and checking blood sugar levels multiple times during each day and night. He will count every carb he eats/drinks and monitor himself very carefully during physical activities.
While his business manager assures the world that Cutler's illness will in no way jeopardize his football career, the truth is that he will have to work ten times harder to make his job possible. There are many other athletes that have made Type 1 fit into their plans and have been successful but it is definitely a huge undertaking.
The positive side of all of this is that there is a huge diabetes community that are ready to surround this young man with support and encouragement. Mr. Cutler also has the opportunity to be a role model for younger Type 1 athletes and to get the word out that the world needs a cure for Type 1 diabetes.

The Simons Simplex Collection

2008-04-30T12:45:00.004-05:00

A while back I mentioned that we were participating in an Autism study. We don't typically do a lot of studies for the simple fact that I don't want to put Daniel through any more than he already deals with. Sometimes I think he must already feel like a lab rat, what with all of the appointments and doctors that comes with Type 1 and Autism. Then when you add that we track his every move, every bite, every number, every day, it just seems like a lot for a kid.

This study came along shortly after his diagnosis of Asperger's and it's purpose is to study the genetics of Autism. I thought it would be good to help them figure out the genetic role in families dealing with an ASD and it could reaffirm for me that his diagnosis was real. I know how that sounds, but there is a wrinkle of time that everyone around you tells you that all the things that are causing your concern are normal. Really? For example, I know that there are tons of kids who do not have an ASD that like anime, but most of those kids like other things too. My son has lived and breathed anime related things since he was three, no trace of interest in any sport or other subject. How about when teachers say that he appears to not have problems socially with the other kids. Then you find out that those other kids call him weird and laugh at him, not with him. While other kids are running in packs, my son usually has one friend. When my son is getting in trouble every single day for being rude and saying things that are not appropriate, what he thinks he is doing is acting in any necessary way to make the other kids like him. He repeats things from cartoons, thinking it will make them laugh, he doesn't realize that it is out of context which makes it just sound mean. He approaches other kids, like a kid wanting to make friends, but when he starts talking to them it is usually mid thought and always about something anime. They do not care and try to walk away, but Daniel follows, still talking, like nothing is wrong. Most kids his age can tell you what they think they want to be when they grow up. Daniel knows he will be a computer programmer and he will create video games. He sneaks his dad's programming books so he can learn, he has attempted to sign up for college classes online and his room is full of notebooks and loose paper with characters and story lines written for the games he will create. His Christmas and birthday lists always have reams of copy paper on them, just for this purpose. These people that tell me his actions are those of any other boy his age, they have never seen a fully loaded meltdown because of a change in plans or because an activity had to end before it was finished. They have never witnessed the uncontrollable rocking of a child that is excited and can't express it. They do not get to see his obsessive compulsive rituals that he adheres to at bedtime or site changes. These things are only a tiny part of the beautiful creation that is Daniel, but these people, in that wrinkle of time, can make you doubt yourself.

We sat down as a family and talked about this study. After all it would require all of us, not just Daniel, to participate. Each of us would have to give a blood sample. I thought this is where we would lose Sarah, but she was all for it. As a matter of fact, when we went to do the blood draw, they could not get her blood but she was brave and was up to a second try. Eventually, we all gave the blood, we all were weighed and measured, Daniel was interviewed and I answered a ton of questions about his history. All of the people that we dealt with were caring and sweet. When it was all done, we received a research report from a licensed clinical psychologist, including treatment recommendations for Daniel, that of course reaffirmed everything we knew. We were also compensated for our time, which was nice, but we would have done it anyway.

The study is being done by The Simons Foundation. The goal is to have two thousand families from across North America to join the study group. If you are interested in participating, the eligibility requirements are:

Only one child with an autism spectrum disorder (ASD), age 4 through 17
One or more siblings without ASD, age 4 or older. Families without siblings or with siblings under 4 will be considered for participation as well.
Both biological parents who are willing to participate
All participating individuals willing to provide a DNA sample

The Family Compensation is:

Participation in a nationwide research project to advance our understanding of autism
Children with ASD will receive a diagnostic and behavioral assessment provided by a team of clinicians at no cost
A research report from a licensed clinical psychologist, including treatment recommendations, will be provided after participation
Compensation for the family’s time will be provided

Here is a list of their research facilities:

Baylor College of Medicine, Houston University of Michigan, Ann Arbor
Columbia University, New York University of Missouri, Columbia
Emory University, Atlanta University of Washington, Seattle
Harvard University, Boston Vanderbilt University, Nashville
McGill University, Montreal Washington University, St. Louis
University of California, Los Angeles Yale University, New Haven
University of Illinois, Chicago

You can learn more and contact them HERE.

The Tri-Meter Project

2008-04-29T09:17:00.002-05:00

I have been MIA for a bit and I apologize. I have been sick for over a week, but I am on antibiotics at this point and starting to feel better. Just be warned that this post may not be fully coherent but I am attempting it anyway. =)

Meters, meters, everywhere! Would you be interested in knowing that this morning at breakfast, my son did a triple test? That is right, he used three meters all with the same finger poke! Is that a record or something? Please understand, he is not losing his mind or wasting strips. Although, I guess, technically that is a $3 blood sugar test.

Daniel has always used OneTouch meters. There have been other brands here and there that he has tried but somehow we always find our way back to the original. For sometime now he has been using the OneTouch Mini, I think the colors won him over, and the fact that it is small. When he got Zak he received the BD meter that had the wireless capability to communicate with the pump. I am not sure we ever even tried it. He always has 3 to 4 meters in use at all times. One at school, one in his d-bag in his backpack, one at home and one in the d-bag we carry in the car. So, being that all of those meters used the same strips, none of which were BD, it just did not seem practical to use the pump's meter.

We have received and started testing out WaveSense Keynote meters. Daniel does a double test when he pokes his finger so we can compare the readings from his Mini and the Keynote. But yesterday he received yet another meter. This one is the OneTouch UltraLink that has the wireless technology to communicate with Zak. Of course we had to try it out, because my boy is a techie at heart and new techie type toys is always a good thing. So, there he was at the kitchen counter with all of the meters laid out in a row and trying to squeeze a big enough blood drop to cover all three.

It is a full time job trying to get one meter to always spit out the numbers you are looking for. When you have three meters in front of you, all saying different numbers, it is kind of a surreal moment. Of course we are dosing off of his Mini because we are using it as the control meter, but it really makes you stop and question how good of control we really have when you see the range of readings that come from the same drop of blood.

I know some of you are all over this and have great explanations. I would love to hear your thoughts. For the record, the numbers from breakfast were: 167, 179 & 201. That is a 34 point range! When it comes to dosing insulin, I think that is a significant difference in results.