Oh Crap!!! A Grocery Store Trip!!!!

This evening I headed to the grocery store to get some snacks for Keeg. How hard can it be? Grab a few carb free snacks for a child so he doesn't have to take insulin with his snacks. Easy, right? 

**************NO**************

It was NOT easy! I couldn't find anything! I finally came back with some cheese and packs of Crystal Light! 

I thought I was overwhelmed before. Now though, the full realization of how difficult shopping is going to be has hit me. It seems meat and veggies are the only thing he can have. He does have to have carbs, and the goal is no more than 70 grams (5 servings) per meal. 

I'm sure we'll figure it out, but there is quite a learning curve here. 

****feeling overwhelmed, under-educated, and frightened

OVERWHELMED

Keytones

Long Acting Insulin

Sliding Scale

Carb Count

Insulin Pump

Glucometer

**********

So many things to learn. I feel like an entire college course has been dumped in my lap with a "learn this now".

A nutritionist and endocrinologist will be coming to visit us today. We'll learn more about juvenile diabetes and how to manage it. We'll learn whether he will qualify for an insulin pump. We'll learn how our diets are going to change. I say "our" because myself and my other two children will support him by altering our own eating habits.

I'm scared. He already has so many other health issues. His keytones are staying large even though we've got his sugar down to 225. Health issues are said to cause sugars and keytones to spike. Does this mean each time his immune system goes haywire that we're looking at sugar battles as well?

Keeg cried last night. It was all just to much to take in. He couldn't order enough food to fill him up. With his sugar so high, he had to keep carbs low. Eggs seem to be the bulk of the menu, but he can't eat eggs due to allergies. He can have them baked in foods, but those foods are all high in carbs anyway. Scrambled, boiled....those eggs he can't have.  It was frustrating to say the least.

Add to that the hospital listed eggs as an allergy, excluding him from ordering any food that contains eggs..... he's about to go crazy. I have to order his plates and swap with him so he can eat what he wants. Soooo annoying.

Yet, in the scheme of things, he's alive. We caught it early. His ph level was just high enough to keep him out of PICU. Things could have been a lot worse. Thanking God that they weren't.

We still have a long journey ahead. There is so much to learn. We still have to get through the visits with his other specialist for the return and flare of his immune system issues and his P.A.N.D.A.S.

We're a team...my family. We'll make it though this. 

Here We Go Again.......

It's been quite some time since I've blogged here. I was almost scared to write about how good Keeg seemed to be doing. How, deep down, I hoped that he was somehow miraculously cured and wouldn't be sick anymore. I didn't want to voice my hopes, as I felt somehow that it would cause the fall to be so much worse if it happened.

Yet, I did secretly hope. Recently I even started talking about the "good run" he'd had.

Then it happened.

Several weeks ago, he started to feel tired. Then weak. It has gradually gotten worse. His tics came back. He started to lose focus. He couldn't participate in any physical activity. He wanted to stay at home when I'd go somewhere.

The beast was back. That awful, unnamed immune system disorder that wrecks havoc on his body and leaves him in bed for weeks, or months. He became pale. He started having trouble swallowing and chewing.

Yet, in the last week I noticed a significant change. Something we had not encountered before. Keeg become severely thirsty. He chugged and chugged and chugged water to the point I was worried he was going to have water toxicity. No matter how much he drank, he still appeared dehydrated and thirsty. His lips were dry, his skin dry, and nothing seemed to help.

I knew that he was looking at an in hospital stay soon with his immune system short circuiting again. However, when our family doctor walked in and told me that he needed to go to the hospital immediately, I was dumbstruck. The she said it, "He has juvenile diabetes". I couldn't say anything at first, then croaked out, "How high?". When she told us 486, I felt the room spin. How could my 16 year old son have a sugar level of 486? How could he have diabetes? It runs in our family, but not juvenile onset!

We are sitting in the ER still now. It's been 7 hours and we've only got his sugar down to 309. We'll be admitted to a room on the pediatric floor later, but for now the focus is getting his sugar to go down.

We are embarking on a long journey. One of learning how to manage diets, count carbs, watch sugar, and take insulin. I know it won't be easy, and I can only imagine the changes that will need to take place.

In the midst of this diagnosis, we still have to deal with the fact that his immune system has flared.

What dynamics are added when an Aspie is diagnosed with Diabetes? Will his Asperger Syndrome result in more issues? Will he be able to manage his Diabetes? 

Please, keep him in your prayers.

Asperger Syndrome Suicide

You wake on a typical weekend morning. Your children are sleeping as you prepare breakfast. At 8:30am you head upstairs to check in on your 14 year old son. A child with a huge heart and beautiful smile, your heart breaks for him often. He has Asperger Syndrome and struggles with the feelings that come from not being accepted by your peers. He is very intelligent, which only seems to fuel the problem. Even adults look at him, and due to his intelligence, expect more from him then he is capable of. How do you explain to a child that only things logically, that the reason people shun him, or get frustrated with him, is simply because he is different? There is no logic in that, yet it is the simple truth, unfair that it may be.

These thoughts bombard you as you slowly walk up the stairs, wondering what today might be and how you will be able to help your son. You open the door as you call softly to him to wake up. With a start you realize that he isn't in bed. You step back into the hallway, figuring he was in the bathroom, or maybe downstairs somewhere. You call for him several times, with no answer.

You aren't really worried. It's not uncommon for your son to get up and go walking. It helps to soothe him, comfort him. You hope he grabbed something for breakfast before he left. He's struggled so much lately, he doesn't understand why people treat him the way they do. He doesn't understand why the world is so different then what he can understand or relate to. As you head back into the kitchen, you pray again the prayer you've said so many times, “Please God, help me find a way to help my son”.

Your laptop is sitting on the table. You slide it over to you and post a quick comment on Facebook, asking anyone that may know where your son is to get in touch with you as soon as possible.

The hours tick away and you still haven't heard anything. Your son doesn't typically stay gone for this long, and you are starting to worry. You've had this nagging feeling that something isn't quite right ever since you discovered that he wasn't in bed this morning. You've been shoving it aside, but now your starting to wonder if you should pay more attention to it.

An associate from work calls you. It's doubtful she's heard that you posted on Facebook asking for info on your son's whereabouts, and you don't really want to get into it on the phone with her. You answer the phone, and in a style true to her, she starts babbling about traffic being backed up on the interstate. She is talking over excitedly and very fast. To fast for your ever growing stressed emotions to keep up with. You vaguely hear her tell you how traffic was stopped because of a body found on the side of the road, and how it'd been there for hours before anyone bothered to call 911. You finally tell her that it's been a very bad morning for you, and that you have to get off the phone.

No sooner have you hung up your phone then panic seizes you. Didn't your friend from work just say that the body found had red hair? Surely she'd have said it was a teenager or a child if it was your son. But, she said it had been there for hours....hours! Oh no, she also said it was near where you live! That can't be your son. Oh please Dear God, don't let that be your son.

You quickly snatch the phone back up and call the local police department. You explain that your son, your son that has red hair, is missing. Your transferred to an officer, who asks you a ton of questions and then quietly tells you that two officers are already in route to your home to get a statement.

There is a knock at the door. You didn't hear the car pull up over the phone conversation. You quickly run to the door and yank it open. As your mind registers that it is two police officers, you stand on your tip toes to look over their shoulder, praying that your son is standing behind them.

The tallest of the two officers look at you with pity and an emotion that can only be sadness as he asks you to step inside and find a seat. This can't be happening! Something is wrong! Where is your son? That body on the side of the interstate can not be your son!

You listen to the officers' words, as if you are detached and standing a few feet away from yourself. It seems that your son is the “body” that your friend told you about. The police haven't pieced it all together yet, but it appears that your son jumped from the bridge that goes across the interstate at around 3:30am. He was hit by a tractor trailer. Through the next several hours, until sometime in the afternoon, traffic went on as usual. People noticed what appeared to be a “large animal in a pile of clothes” but didn't have time to report it. Others thought it was a body, but again were to busy to pick up their cell phones and call 911, much less turn around to check. It wasn't until afternoon that someone stopped and called 911 to let them know that a body was on the side of the interstate, where it had lain since 3:30am.....alone and hit by several vehicles. The clothing matches up to your son's clothing. There isn't any reason to do an identification, the police will use medical means to finalize that it really is your son. The police are certain it is suicide.

The next day, our best friend stops by to let you know that the story was in the newspaper again. This time the article states that the body that held up traffic for hours was a 14 year old that committed suicide. At the very bottom of the article, almost as an afterthought, it reads, “the teen was taking regular medication for Asperger's Syndrome and autism”. You look at her incredulously. Your son committed suicide due to the challenges, and lack of treatment, he faced having Asperger Syndrome, and it was only mentioned at the very bottom of the article as an afterthought? A Sargent said that your son was taking medication for Asperger Syndrome when there are no medications available to treat it, as if it's something that requires a magic cure? Why wasn't it mentioned that your son being treated like an outcast and different, not just from his peers but from adults, impacted him daily? Why didn't the article talk about how tons of parents around the country are finding themselves without the resources or tools necessary to help their children? Why didn't the article list the few available resources for this area? Why didn't it reach out to other families going through something similar, other families that every day fear their teen with Asperger Syndrome might also commit suicide?

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

I wish I could say that I just made up this story. However, I am saddened beyond words to say that I didn't. This happened here over the last few days. As a mother frantically searched for her beloved 14 year old son, motorist to busy to call 911 were driving by his battered and tattered body.

A newspaper quoted Sgt. G.A. Barger of the North Carolina State Patrol as stating that the child was taking medication for his “Asperger Syndrome and Autism”. To date, there are no medications available to treat Asperger Syndrome. There is no cure for Autism, and many parents advocate that a cure isn't needed, merely the perception of “typical” people to change.

People have already started to judge. A mother states that she has a child with Asperger's and she doesn't understand why the article mentions it at all as her son is “bright and a joy to be around”. She wonders what Asperger Syndrome has to do with his suicide, or any other news article that has mentioned it recently. Another mentions medications and how they only “make things worse”. Another poster states that anyone with Asperger Syndrome wouldn't want that for the rest of their lives. Yet another newspaper article states that the child “suffered with Asperger Syndrome”.

There are so many things I want to say. I want to scream that children with Asperger Syndrome wouldn't suffer if it weren't for the judgements, criticizing, and mistreatment from “typical” people. I want to scream that there is not a medication for Asperger Syndrome. I want to scream that Dan Akroyd, Bill Gates, Daryl Hannah, Satoshi Tajiri, James Durbin, Paula Hamilton, Peter Howson, Clay Marzo, Les Murray and others all have Asperger Syndrome. There are so many more, Al Gore, James Taylor, Bob Dylan, Robin Williams, Andy Kaufman, Hans Asperger, isaac Asimove and more. Do they seem to “suffer”, need “medication”, or need a cure? I want to scream that popular belief feel that Abraham Lincoln, Bobby Fischer, Benjamin Franklin, Marilyn Monroe, Henry Ford, Isaac Newton, Jane Austen, Vincent Van Gogh, and Virginia Woolf all had Asperger Syndrome. How can all these people be broken and need a “cure”? How can all these people not want to live simply because of their diagnosis?

I want to scream at the world that I am the mother of the sweetest, kindest, most caring teenage son. I want to scream how his intelligence level is through the roof, but how he lacks an understanding of social concepts. I want to scream out how he tries to engage his peers in conversation, but the “typical” teens shun him simply because he is different and different isn't “cool”. I want to scream at the world that different is not bad or wrong.

Yet, instead I will stand here and speak for the family that is to grief stricken to speak for themselves. I will stand and say that my son has Asperger Syndrome and that his life has been difficult. I will stand and speak out and let others know that my son's life, and the life of other teens with Asperger Syndrome, is difficult because others refuse to accept different as being acceptable. I will stand and tell others that you can not say you are scared of someone with Asperger Syndrome because of what one child with Asperger Syndrome did months ago, but instead you should stand up and help find a way for these children to have available the resources they need to help them succeed.

I am the mother of a child with Asperger Syndrome.

I am proud to be the mother of a child with Asperger Syndrome.

I support ALL parents of children with special needs.

I won't ever quit speaking up for my children's needs.

Always remember, if you've met one child with Autism, then you've met ONE child with Autism. No two children on the Autistic spectrum are alike, no two children with Asperger Syndrome are alike. One thing they all share though, resources are not available to help them reach their full potential. Nor do they experience the acceptance in society that they should.

Please, don't be one of the passive people that sit by and judge and criticize. Stand up today and speak out.

For resources regarding Autism Spectrum Disorder, you can follow the links below:

Autism Speaks Resource Library which has many books, websites, blogs and videos for families to use.



Autism Speaks Social Network for on-line chats with other parents in similar situations. Some use it to pose a specific question and get feedback, while others utilize it as a support group.
Autism Speaks Tool Kits http://www.autismspeaks.org/family-services/tool-kits
Autism Speaks Family Services web link - http://www.autismspeaks.org/family-services



Other Resources:



http://www.yourlittleprofessor.com/friendship.html
http://www.yourlittleprofessor.com/teen.html
http://teenautism.com/category/puberty/
http://www.aspires-relationships.com/. It seems to have a wide variety of resources that may be helpful.
There is an excellent online support group called GRASP – The Global & Regional Asperger’s Syndrome Partnership. http://grasp.org/page/grasp-support-groups.



You can contact me at any time for questions, support, or information at pathsfrommysoul@gmail.com

Light it up Blue for Autism

"In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.

Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.

Visit our website to learn how to participate and check back in early March to LightItUpBlue.org to register your events and see a full list of participating buildings.

Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!"  (taken from http://blog.autismspeaks.org/2012/02/22/liub-2012-kickoff/)

Lowes has blue bulbs available. Please stop by to get your blue bulbs and light up your own home to raise awareness for Autism. Thank you. 

Feb 21st Update and Prayer Request

Many of my friends and family have contacted me recently for an update on Keeg. To be quite honest, I didn't have anything good to say, so said nothing at all.

Keeg is getting a bit worse day by day. His chest pains are daily now. He wants so much to get up and play, but can not have any physical activity until his echo-cardiogram is completed. Every now and then he slips away from me and does something physically active. Afterwards his chest pains begin in earnest and he's so very fatigued he can only stand with help. We're counting down the days till he gets in with the pediatric cardiologist and his geneticist.

Emotionally he's regressed so very much. I can't tell you how many times in a day his sister and I have to try to keep him from having an emotional melt down. He completely loses it over minor things. For example, the other day his sister asked him to put the frozen biscuits in the toaster oven. It was a minor task. One she thought would be one step and simple, as those are often the only task he can perform now. He laid the frozen biscuits directly on the wire rack, with no pan under them. When they melted down between the slots, and started to burn, we tried to hurry up and clean the mess up before he saw. Yet, he did see. He was so upset that it was all we could do to calm him. Once he forgot to cut off the screen saver when we were watching a movie, another time he forgot to put his bowl in the dishwasher when done eating, another time he forgot where he'd put his shoes......Little things like this severely upset him. You'd think the world was coming to an end, and it's all we can do to convince him that it doesn't matter, and it's all OK.

Keeg can no longer do even basic math without struggling. He attempted to play an elementary math computer game, and came to me crying, “I can't even figure out what 8 times 6 is”. This from the child who was doing Trigonometry 6 months ago.

At church, he attempted to take notes. For those of you that know Keeg well, you know that he is an ardent note taker. He'll take notes during sermons, Bible courses, etc and then delve into them with research after. Due to his potential heart condition, he sat beside me during the service. He spent the first 15 minutes struggling to write down the first thought that had been spoken. I watched from the corner of my eye, unsure of what to do. Do I let him continue to struggle and try? Or do I tell him not to worry about it? Which of those things would upset him more? I didn't know what to do, so I waited. About 30 minutes into the service he looked at me with tears in his eyes and said, “Momma, I'm sorry I'm not taking notes”. My heart broke, but I smiled, looked him in the eyes and told him it was OK, just to listen.

At times his speech is so slurred you can't understand what he is saying. Any other child would get frustrated, but Keeg just repeats it over and over each time we ask. Often we figure it out, other times he'll motion for us to just forget it. It pains me to see that my child at times has no voice.

There are other times that he tries to read aloud. Keeg has always been the one to read the scriptures aloud in our daily devotion. Yet, now he struggles to read even a few lines form the devotion itself. He stumbles over words and can't figure out what they are. While playing hangman at the neurology office, he had to ask a nurse how to spell “taste”. It was a nurse that has worked with him for 7 years and knows him well. When he asked her how to spell it, she looked at me in shock. There was nothing I could say as it was all I could do to hold back tears.

Although Keeg has noticed these things, the worst for him has been his looking up Scriptures. Keeg was very young when he begin to learn the Bible. It was something that he just had a personal knack with. Keeg learned the Scriptures at a young age, and his understanding was well beyond his years. I remember at not even 4 years old, he stood on a stage at The Straight Gate in Lexington, and gave his personal testimony. When he was done, everyone was wide eyed and had tears all at the same time. As he walked to the back where I sat nursing his teacher, people reached out to touch his shoulder as he walked by. I've seen him sit down with pastors for hours, having conversations that far surpassed my own Bible knowledge. Keeg loves reading his Bible. He loves sharing the Scriptures with people more then anything. He's always told me that there is a Scripture for everything you need in the Bible, and more often then not he could tell you what that Scripture was.

Now however, he struggles to remember where the books of the Bible are located. You can see his frustration when he's looking for a book, and it doesn't come easily to him. I've fallen into the habit of, when searching for a scripture, asking him what scripture I'm looking for. Now however, he can't tell me. He looks at me with this mixture of confusion, despair and heartache across his face.

It's not just hard for him. His youngest brother doesn't understand why he can no longer play with him every day. He pleads and begs and cries.....not understanding that it's not just a matter of choice.

Keeg's sister is struggling as well. Keeg has always been her hero. She's always looked up to him, and wanted to be like him. Now, suddenly, she's become his caretaker. She looked at me with tears in her eyes while we were preparing dinner and asked me, “Mom, is Bubba gonna be OK?”

I did what all Mom's do. I smiled, looked her in the eyes and said, “He's going to be OK.” I then went on, “I don't know what's going to happen. He may get better, he may stay the same, or he may get worse. But what I do know is that God is taking care of him and us, and that no matter what happens our family is going to be OK.”

Keeg has so much on him and I can not imagine what he is going through. I don't know what I would be like in his situation. Yet, I honestly don't think I'd be as unselfish as he is. He prays more often now then I've ever seen. He carries his prayer journal with him everywhere. I occasionally catch a glimpse, and am always amazed to find him praying for someone else! He prays for every one we come in contact with and hear of. He prays for people he's never even met! If anyone ever says to him or he overhears a prayer request, he'll pray wholeheartedly. I see people in our lives that are blessed by God, and I can't help but think of the scripture in James that says, “The effectual fervent prayer of a righteous man availeth much.” I see my son's prayers being answered, and am moved by his faith. Even as he asks God why God has made his life so hard, he still believes in God with his whole heart, soul and mind.

Keeg's prayers are unselfish. Each night, as he's regressed more and more, he's cried for the loss of someone in his life he loves greatly. Yet, his prayers are always for that person to return to God and to have a relationship with God. Not only has he not asked God for that person to return into his own life, he even went so far as to ask God to restore that persons relationship with Himself, “even if they never see me again”. How does a child at the age of 14 learn to pray so completely unselfishly?

My children and myself don't know what is going to happen. Right now, we are standing on a path that appears to have tall, dangerous, craggy mountains ahead of us. Yet, we know that often God will divert our path before we have to go over those mountains. We also know that should we have to go over those mountains, that God will stand by us and carry us when needed. He will not forsake us. This path isn't an easy one, but the one thing I am sure of is that my family will serve the Lord regardless of what path we are led down. We will praise Him even in the midst of the storm. We will continue to love Him with out whole hearts, minds, and souls.

If ever our family should lose sight of that, then I ask you my dear friends to remind me. There is no way we can ever get through this without our God holding our hands, and even carrying us in His. He's here with us, and I am forever indebted to Him. I do not deserve the love He has shown us, yet I am so thankful for that love.

Please continue to keep my wonderful son in your prayers. Please pray for his siblings as they struggle to handle Keeg's rapidly changing health.

No matter what happens, Keeg is my son and my love for him will grow each and every day. I'm so very proud of him. He is a daily example of how we should love. He's had some issues, and at times I didn't know what to do with him. Yet, at the end of the day, his love for others is unconditional and his forgiveness reaches out even in the midst of his own pain.

I am blessed to be called his mother. Please, keep praying for him.

Chest Pains and ER Visit

As we were on our way home today, Keeg started to have chest pains again. Whereas the chest pains he's had before only lasted arpx 5 minutes, this one didn't go away. He started out having a sharp pain in his lower left chest. The pain then, within seconds, was also in his upper right chest. Keeg has situs inversus totalis (all organs on opposite side of body). He then got sharp pains behind his eye and an instant painful headache at the back of his head. He began to have pain in his ear and jaw. At this point in time he had turned very white and was in obvious pain. His left leg followed by his groin area began to hurt. He then flushed a dark red and told me he needed the air conditioner on. Over the next couple of minutes both legs, feet and his lower stomach begin to hurt. He described it as, "All the pain I've ever had in my whole life is happening right now at the same time." As the pain in his chest and head (the worst two pains) intensified, he became lightheaded and simultaneously weak. He felt very sleepy but said he was scared if he went to sleep he'd never wake up again. He has also been having a constant back pain that intensified.

Upon arriving at the hospital he was skipped ahead of everyone else in the ER and taken back. His blood pressure was taken upon arrival, and he was then taken back for an EKG and a chest x-ray. He was kept on a heart and oxygen monitor. His blood pressure was not taken again. He also had a blood test done to check some kind of enzyme. During his chest x-ray he again experienced sharp chest pains, but at that time he was not hooked up to any monitors.

The results of the EKG and chest x-ray, as well as the blood enzyme test, was normal. The ER doctor told me that he could go home but could not do any strenous activity. He could not run, play, experience stress, etc. He told me to call the cardiologist that he was referred to, tell them we were seen in the ER for chest pains, and that he needs an echocardiogram done immediately. He said that the fact that Keeg's pain moved to multiple places (two different locations in his chest and then other parts of his body) was a good sign and meant it probably wasn't his heart.

Upon arriving home I looked at the discharge papers I was given. It says he is to follow up with his regular doc in 1-2 days. It also says that although his EKG and X-ray were normal, sometimes "the signs of a serious problem take more time to appear". I am then told to "return promptly or contact his doctor if any of the following occur:  1) A change in the type of pain such as it feels different, becomes more severe, lasts longer, or begins to spread into your shoulder, arm, neck, jaw or back. (Considering the pain in his chest spread to each of these areas, I'm sure you can see my concern). 2) Also, shortness of breath or increased pain with breathing. He's already experiencing that as well and hospital personnel saw it first hand. 3) Weakness, dizziness, or fainting. Keeg had to have assistance getting his jacket and shoes on and had to be taken out by wheelchair due to how dizzy and weak he is. He needed assistance to get into the vehicle. He needed help getting home and due to how weak he is, he's sleeping in the clothes he wore today as he's to weak to change clothes.

It's a bit disconcerting (OK, a LOT) that the doctor felt he needed an echocardiogram ASAP but that one could not be done while we were at the hospital. It's also disconcerting that the doctor would say the pain being in multiple places is a "good sign" when the paperwork we were sent home with seems to say the opposite. It's also disconcerting that the ER doctor feels that getting a quicker appointment with  a pediatric specialist is as simple as a parent calling the specialist!  Overall, it's disconcerting that my son had the worst pain he's had in his life, and we were sent home with no answers.

Please keep him in your prayers. I am getting on the phone with each of his specialist tomorrow and insisting that they get him in with the geneticist and cardiologist immediately. I'll do whatever it takes for this to happen. Today's events, on top of what else has been happening is quite frightening. Please keep praying for Keeg.