Saturday, June 26, 2010

The Gospel

According To You

I bought a book at our church when a group from one of colleges in California came to sing. It's a scriptural devotion book to add to your daily reading. In it was this poem The Gospel According To You. I love it. Such a wonderful reminder.

The Gospel According To You
The Gospels of Matthew, Mark, Luke, and John
Are read by more than a few,
But the one that is most read and commented on
Is the gospel according to you.

You are writing a gospel, a chapter each day
By the things that you do and the words that you say,
Men read what you write, whether faithless or true,
Say, what is the gospel according to you?

Do men read His truth and His love in your life?
Or has yours been too full of malice and strife?
Does your life speak of evil, or does it ring true?
Say, what is the gospel according to you?

Author Unknown

So think about it. What is the gospel being said through you?

Monday, June 21, 2010

Letting Go

So after my last post it has actually been easy not to obsess over Eli's symptoms. I really feel like I have given it to God. I did have one last task of making the official list to present to the doctors. I was afraid to start because I wasn't sure if I would be able to type it out and let it go.

One thing I have been really working on is opening up at church. It helps people to know how to pray. I mentioned the list in my Sunday School group yesterday. A good friend suggested as I type each symptom offer it as a prayer to God. As I walked back to my seat I realized I was again trying to do the list on my own. But I can't. I don't really have the power unless God is fully with me. So I came home from church and sat down to actually type it out. And after each one I told God it's now His to do what He needs to. When I was done with it I walked away and kept telling God it's His and NOT mine. And it is. It's in His hands.

Can I tell you how good it feels to have peace about it? It's amazing.

So thank you Alan for the words of wisdom. They were taken to heart and made a task I was dreading get done with a lot less pain than I imagined.

Monday, June 7, 2010

Puzzle Pieces

Eli had a cardiology appointment today. It went great. It was only a blood pressure check (so no echo), but he seems to be doing okay for now. However, when we last went to the cardiologist, I had talked to him about the confusion and the fact that Eli gets really easily distracted. So his doctor said it was time to go to neurology to see if he was suffering from brain damage since kids who undergo heart surgery (specifically open heart) are at high risk. Typically you need to wait and make sure it's not a short term thing (which can happen). At that time he was 3 months post surgery so it was far enough out from surgery that anything temporary should have resolved itself. I came home after that appointment and made the appointment with neurology. Then I decided I needed to make a list of everything I was seeing in Eli so the neurologist could have as much information as possible. As I looked at the list I was shocked to see there are too many things to say it's a coincidence.

Speech issues (especially when there is background noise)
Easily Distracted
Legs hurting for no reason
Funny smile (he only says cheese with one side of his face)
Sleeping issues (he doesn't sleep well at night)
Going up stairs (delays such as doesn't alternate feet, must hold on to things, can fall easily going down stairs)
Can't walk for very long
Sits when doing activities or has to take several breaks (most people miss this)
Hearing difficulties

These are just a very few.

When I brought the list and showed him the pictures of his smile he was shocked. Then he began to notice so much more than what is listed above. I explained it was like me asking him to monitor Eli's heart without any of his equipment. No BP (blood pressure) machine, no EKG machine, no echo machine. Nothing. He said there is no way. I feel as a mom I am trying to help Eli but I don't have the equipment necessary. It would be easy to go to the pediatrician and she would be fine with giving me referrals, but I don't think me going to several different doctors for them to treat symptoms would be all that helpful. I need doctors to be looking at the whole picture. I often get the excuse of he's had a hard couple of years, he has a heart problems, he just had surgery, etc. But being 5 months post surgery Eli should be back to "normal". The heart recovers quickly as do young children. He should have already caught up. He gave me advice and really truly listened. He saw EVERYTHING I was seeing on that list and much more. He feels there is more going on with Eli than meets the eye.

As I left that appointment I had a long talk with God on the way home. I started thinking of Eli as a puzzle (his doctor and I always refer to him as one). A puzzle we are trying to put together so we can see the whole picture. Only in my talk with God I realized it's NOT me who needs to put this puzzle together. God knows the picture and how it is suppose to look. HE will put the peices together as they are needed. My problem is I obssess about Eli when I start thinking of what I need to tell the doctors and explain what is going on. Don't get me wrong, I do need to make lists and advocate for my child, but I need to stop at making the lists. I need to pray to God for peace, wisdom, the ability to communicate effectively, the doctors minds to be open and truly hear and see my concerns. When I feel that need to obssess I need to pray for those things and leave it there. I know that mentally, but actually doing it is a completely different story.

So this is where I ask for prayers. Please pray with me as Eli has LOTS of appointments coming up that I can do the job God gave me as a mom, while leaving in Gods hands those things I don't need to worry about. It's not my puzzle to solve.

Thursday, June 3, 2010

The World Of Autism - Where Do You Turn?

Before Dakota was diagnosed with autism I honestly thought I was going crazy. I didn't understand what was happening to my precious little boy. The fits, the not talking, the repetitive behaviors, the really BAD sensory issues, etc. Although some of these things I didn't realize what they were, such as I didn't know he was having sensory issues. I just knew he wouldn't touch anything that made him messy and would go almost literally insane if you forced him. This included food and not eating. No one quite understood when I said "he doesn't eat". They would see him eat a pretzel and say "look he's eating he's fine". Only those pretzels were the only texture he would eat. You couldn't just sit him at the table to eat or he would throw up. We initially reached out for help because he went from the 75% to the 5% for weight in a matter of weeks. We started out with the therapy they recommended because no one again understood. They thought a group therapy once a week would "do the trick". So we started therapy with the group only after the second session the therapist said "this isn't going to work, he needs much more one on one therapy and he has serious sensory issues". How did she come to this conclusion? I spent the entire hour every time we met with him kicking and screaming and running away from the table and the food and having him to the point of almost throwing up (luckily he never threw up at therapy). Only I knew that is how he would react because that's what he always did. It was only through getting therapy for the food issues that we realized he was delayed in speech. As we went through one on one sessions his therapist came to realize Dakota was showing signs of something much bigger. Finally she said the words Asperger's Syndrome. It was a long road with wait lists, and more people ignoring me to get to the testing. But once the testing was complete is was confirmed that he was autistic. His official diagnosis is Autism Spectrum Disorder/PDD-NOS. At the time I remember thinking "praise God I'm not crazy" and I still call that piece of paper my "I'm not crazy paper". At the time I was already in therapy, but I didn't really know what was next or what to do. I know a lot of parents feel that way when their child gets diagnosed. After a dear friends son was diagnosed she exected someone to tell her where to go and what to do. Only no one did as no one ever does. That is why this same dear friend started a blog/site. And it is amazing. It has all the resources I had to scramble for even before I knew my son was autistic. She shares the discoveries their making and sharing anything she might find useful. I love it. I loved it enough to share it here to spread it's resources so other parents don't have to scramble like I did.