Dear Suicidal Teens (And How Dear You Are, Indeed)

Dear Suicidal Aspie Teen (Or Autistic Teen, Or Teen With PDD-NOS, Or ADHD Teen, Or OCD Teen, Or Bipolar Teen, or Depressed Teen, or Gay Teen, or Trans Teen, or Bullied Teen, or Abused Teen, or Whoever You May Be):

I can’t promise that you’ll wake up one morning and your world will be filled with endless sunshine (or moonlight, if that’s more your style) and happiness and prosperity and that you’ll never have another self-loathing or suicidal thought ever again. I can’t promise that you’ll ever be the most well-liked person in your school or workplace or that you’ll never be bullied or loathed or put-down ever again. I can’t promise that your world will be any less overwhelming, any less dizzying, or any less difficult to live in than it is now. I can’t promise that you’ll become the next Nobel Prize winner, the next Pulitzer-winning author, the next Grammy-winning musical artist, the next Oscar-winning actor or actress, the next gold-medal Olympian, or what-have-you. I wish all of these things for you, of course, but I’m no psychic; I haven’t a clue what your future holds.

But having dealt with suicidal urges since the age of twelve, I do know this: staying alive is worth it.
Now, some of you may be thinking, “Yeah, well, staying alive may be worth it for you, but you don’t know me, and you don’t know the hell I live in.” And, indeed, I do not. I don’t know if you having a loving family or supportive friends; I don’t know if you have family or friends at all. I don’t know what it’s like to have your exact sensory issues, your exact deficits, your exact anxieties and fears, your exact tics and stims, your exact pain, your exact loneliness, or your exact regrets. I don’t know if you’ll ever graduate high school or college, and I don’t know if you’ll ever get a job (fun fact: I turn 20 years old in a month, I’m a straight-A student who supposedly has “decent social skills,” and I have never been employed a day in my life. It’s not just you, I promise). I know what it’s like to have my PDD-NOS, to have my weakness and inadequacies and painful memories and regrets, but I don’t know what it’s like to have yourstruggles, and I’m not going to pretend that I do.

 But I know what you do have: you have yourself, and that “you” deserves a chance—a chance to try, a chance to experience, and a chance to find beauty in this world. See, there’ll be moments that you’ll be glad that you stuck around to experience. I can’t promise that the moments will be particularly abundant, but I can promise you that they’re there. There’ll be a song that you never heard before that sends chills from the tip of your head to the core of your being. There’ll be a time when you help a stranger, perhaps even an act so small, so inconsequential to you that you have no idea it was an act of kindness at all, and that stranger will tell you that you made their day, and your heart will beat a little lighter for a little while. There’ll be that hobby that you get into, a hobby that you may or may not ever be “good” at, that will fill you with awe and, well, fun! There’ll be a way that the sunset scatters across the clouds, a way that the leaves tumble from the trees or that the wind sweeps across a field of tall grass, a way that the rain will dance along the rooftops, that will take your breath away, even if for only a second. There’ll be a contest that you enter that you swear that there’s no way you will win or place in…but you do, because you’re more incredible than the self-loathing thoughts in your head will ever let you believe. There’ll be battles that you win, discoveries that you make, and joys that you have that bring you happiness just when you thought that happiness could no longer exist.

And maybe it’s presumptuous of me to assume that the little moments of happiness are worth dealing with whatever pain you are dealing with. But consider this: maybe you’re somebody else’s small miracle, somebody else’s stranger, smile, random occurrence that makes their day or even their life, and maybe your dark thoughts are being conniving little jerks that aren’t letting you see this.

Sometimes, you mean a lot more to a person than you’ll ever be able to believe.

Throughout most of my adolescence, I swore that my father merely tolerated me because he had to and that his life would be indefinitely better without me in it. It wasn’t his choice for his wife to give birth to his child when he was 48 years old, when his other children were already grown up and getting on with their own lives and when retirement was just over the horizon. It wasn’t his choice for that child to be “developmentally delayed” and for that child to need speech therapy and special education. It wasn’t his choice for my mother, through no fault of her own, to be forcefully removed from our family picture when I was six. It wasn’t his choice to have a daughter who threw deafening tantrums in the middle of crowded supermarkets and for strangers to judge his parenting skills. It wasn’t his choice to have a teenager that bit and scratched herself, that would almost get them both killed with her inability to distinguish “No!” from “Go!” from the driver’s seat of her small car,  that made him stay up late at night sobbing with worry. It wasn’t his choice to have a kid like me.  I thought that there was no possible way that he could have trulyloved me—all I ever seemed to do was drain and irritate him, and he didn’t deserve the trouble I put him through.

And I told him this in a therapy session one day; I told him how sorry I was for ruining his life and how I wish that I could be a better daughter, one that didn’t make things so worrysome for him. He was absolutely flabbergasted; he swore that I was the best thing that ever happened to him. Many days, I highly doubt that this is at all true, but the way his eyes almost glistened with tears (note: this is a man who passes large kidney stones and attends family members’ funerals without even hinting at a tear) that day tells me that I must mean something to the guy. He said that I keep him young, that his later years would have been so much less colorful without me in it. Now, I’m sure that I age him much more than I refresh him, but maybe the goofy poetry that I write inside of hand-made cards serves as a Fountain of Youth running behind those wrinkled eyes. Also, I’m his personal tech support; I’m the one that taught him how to use an iPhone and how to set up a Facebook account. That has to count for something, right?

See, we humans aren’t too good at telling our fellow humans how much they mean to us. It may well be that where you look in the mirror and see a burden, an aggravation, a chronic screw-up, others see a joy, a blessing, a person worth having around and a person that makes their lives better simply by you being in it. When you see yourself as unlikable, you may wonder how anyone else could possibly like you, either—I,  personally, tend to expect that everyone sees me as bothersome or annoying and am often very taken aback when someone admits any sort of fondness towards me. But you are likeable, and chances are that there’s at least somebody out there who has a fondness towards you and who would be sad if they could no longer experience your presence. 

And I know that you can know and believe all of this and that it still won’t take the thoughts and feelings away. I still feel absolutely worthless and useless many days, and I still don’t particularly like myself as a person sometimes.  Knowing all of this about the beauty of living and about how loved I really am doesn’t do much to keep the images of a knife cutting through my throat or my body dangling from a tree by a rope from popping up from time to time. It’s an on-going battle, one that you may have to fight every single day or even every single hours. It’s not at all a fair battle, it’s not at all an easy battle, and it surely isn’t a fun battle, but it’s a battle worth fighting, and it’s a battle that you’re more equipped to fight that you may ever feel that you are. And the good news is that there are so many people fighting this battle alongside you and that would be more than happy to help you recharge your ammo. There’s the National and Regional suicidal hotlines for your area (United States: 1-800-784-2433 ; U.K: 08457 90 90 90 ; here’s a pretty comprehensive list: http://www.reddit.com/r/SuicideWatch/wiki/hotlines), as well as several online chatrooms, such as https://www.imalive.org/. There’s the members of this Aspie Life group. There’s me, if that’s anything. There are so many people who want you to win this battle, who want you to live, who want you to experience happiness and success and all that life has to offer. There are reasons to keep fighting. I promise. 

Because I know that I can’t promise that you’ll ever win a Nobel, a Pulitzer, a Grammy, an Oscar, or an Olympic gold medal, that you’ll ever have an abundance of friends or your dream career or a lover or even a degree, but, you know, you just might, and the only way to find out is to stick around and see. 

Submitted January 4th, 2015 

Author: Paula Gomez

Click blue link for: Email Contact

Update and a New Year

It has been a long haul through the first semester of college for Keegan (you can find him and I on AspieLife on FB). College opened up a whole new set of stressors we had not encountered yet. Anxiety attacks, meltdowns, and panic! However, I am proud to say Keeg passed with all As and Bs.

Keeg has picked up a few more diagnosis since he started college, the most recent being Eosinophilic Esophagitis. However, that new diagnosis explains the uncontrolled vomiting he had as a child every time he ate, the choking he's had for years, and so much more. You can read about it on WEbMD.

Keeg hasn't posted on this blog but he has posted on the FB AspieLife page along with others. Feel free to catch upthere !

Asperger Suicide SCREAMS

It came to my attention most recently that the blog posts that receives the most views across all my blogs is the one I posted about a local 14 year old teen with Asperger Syndrome that committed suicide.

It has also come to my attention most recently that the majority of the people reading that blog post are those with Aspergers contemplating suicide. The second runner ups are their parents.

My heart is breaking. I am the mother of two on the Autism spectrum. I have seen so much heartache and pain.

When I was a young teen, even though I did not have Aspergers, I attempted suicide. I remember that hopelessness. I felt like I was all alone in the world and no one else could understand.

BUT YOU ARE NOT ALONE!!!

If you have Aspergers and are thinking about suicide, YOU ARE NOT ALONE. Because right now there are others from ALL OVER THE WORLD that are logging onto the internet, punching some words into a search engine, and coming to read the blog posts because THEY ARE ALSO SUICIDAL.

I can't say I understand Aspergers. I wish I did. As a mother I wish it so very much. I would love to understand why my sons feel and think the way they do. But there is hope. There is always hope. Even if the hope is only that you aren't alone.

Please, don't commit suicide. You are beautiful. You are put here, on a planet you feel is alien, to teach neurotyps like me what I am supposed to be.

Join us on Facebook at AspieLife. My son started this FB group to bring together not just those on the Autism Spectrum, but also those that love them and care! He said that all the groups were either for people on the spectrum, or were for those that loved someone on the spectrum but all that seemed to do was alienate us farther apart. He wanted somewhere that we could all share, and talk, and CARE. A place of acceptance and support. So, he created AspieLife. Please, come join us there and know you are not alone.

If you are a parent, sibling, friend, spouse, girlfriend, boyfriend, workmate, etc of someone on the Spectrum and YOU CARE then please join us on AspieLife.

You are not alone. Any of you. Regardless of how you feel, what you think, what you've done, what you will do......... I LOVE YOU.

T1D Aspie College Fund

DONATION LINK

Allow me to introduce myself. My name is Keegan. I turned17 years old a month ago. I have Aspergers which is a form of Autism. I also have Type 1 Diabetes, which was diagnosed September, Friday the 13^th, of last year. Since I was 4 years old, I've had serious immune system issues that specialists have not been able to accurrately diagnose. Since they haven't been able to diagnose me, you can't treat an undiagnosed illness. That means that I can't really get the help I need. For me personally, it means I get exhausted easily and sometimes end up in hospital for large amounts of time. I get sick easily also.

Something really cool is that I have Situs Inversus Totalis. This means that all my organs are on the opposite side. For all you Trekkie fans out there, Situs Inversus plus Aspergers means I'm a Vulcan because with Aspergers I think very logically. I also suffer from migraines (from mind melding too much). I have severe allergies to everything environmental (everything that has to do with outside such as trees, flowers, grasses, hays, molds, etc). Except penicillin.

Because of my Aspergers, I don't have common sense. So I joke around with everyone about it. When I do something that doesn't makee sense, people say, “It's not rocket science” and I say, “If it was rocket science, I'd get it!”

Because of Aspergers and my health issues, I have a hard time concentrating and I get distracted easily. I also stay pretty weak. This makes it hard for me to get a job, attend a full course load in college, drive, and take care of my own needs.

My dreams are to go to college so that I can have the knowledge to create video games. I want to create fun video games that will help people with special needs develop the skills they need in real life. For example, a game that will teach them to interact with neuro-typicals. Or, the game might help them to undersand facial expressions (we have problems with that). I want the games to be an exciting game that you'd find on a top seller list.

Also, as I sale these games, I will donate a percentage of profits to different non-profit organizations that help kids with special needs such as Aspergers, Type 1 Diabetes, Cerebral Palsy, etc.

As of today, I am OFFICIALLY enrolled in college. I have enrolled in an Associates Degree progam in Simulation and Game Design. I am excited. But, I don't have everything I need for college. Our family does not have the money needed to get my stuff for college. I also have a pell grant but it's not enough to cover everything I need. It will cover tuition costs though.

In addition to tuition, I also need the following:

*Basic school supplies (binder, notebooks, pencils, pens, sketch pad, etc)

*A computer that ideally will have an i7 processor, a nVidia 850 graphics card, and at least 16gb ram. This is needed because of the work we'll be doing in class on the computer.

*Transportation costs to get back and forth to the campus

*An external hard drive to back up all data

*Books for courses

I feel kind of bad for asking people for money because I never do. I am used to living on what little funds we do have so I can't really get the stuff I want or need. I really want to go to college because it will be something I can do that will help me make money and that I can do while resting (so I don't get to worn out). I will also be able to make money so I can help others instead of people offering to help us.

Any amount of money will be of help. Thanks in advance for helping out. Once able, I will always help people out.

Any extra funds that are left over in my educational fund when I'm done with my degree will be donated to anybody else I find that has special needs and needs help with college.

Thank you for your help in following my dreams.

Sincerely,

Keegan Duffy

PS: Courses start August 18th so I'd like to have my needed supplies by then! 

DONATION LINK

From Highs To Lows

Keeg has truly been struggling. It breaks my heart and I wish that I could help him. He had an Aspie breakdown today. In addition to his health concerns, we've had a very traumatic outside force wreaking havoc on our life and the stress has been considerable.

Keeg's last visit with his endo showed that his A1C has dropped to 5.2. While seemingly ideal, it actual means that he is having way to many lows. His doctor has decreased his Levimir to 100 units at night, yet he is still waking from his low sugars (50s to 60s).

The endo stated that this is considered his "honeymoon" stage. The stage where it appears the pancreas is suddenly working and creating insulin. She stated that it doesn't last long, and soon we'll be battling highs again.

Keeg also has an inner ear infection and feels terrible, so he doesn't want to eat. He is alternating between excessive overwhelming hunger, and the desire not to eat at all. No good for fluctuating sugars.

We are still awaiting his appointments with his many other specialists.

We are embracing the positive and happy moments and using them as the sails to pull us into tomorrow.

With love,
his mom

Update: Immunology, New Insulin, and more...

First, my apologies. So many of you have asked me for updates on Keeg. In all truth, after our visit with immunology, I shied away from blogging. Putting into words all I felt at that time was a bit to much. Now though, I've had some time to process and deal, and now is the time to share.

Keeg visited his immunologist. We had more labs run (ALOT) and are still waiting results. We have been referred (again) to an allergist, hematology, and geneticist. As soon as lab results come back, we will lay out a plan for immunotherapy. Basically, the docs want to start manipulating his immune system to see if they can get it to quit attacking his own body. I don't have a lot of details, but will at a future visit. Hopefully, the worst case scenario is just that.... a scenario and not reality. Worst case being that he is Type 1 Diabetic because his immune system attacked his own pancreas, as it may do other organs.

Keeg is having difficulty swallowing. It feels like something is stuck in his throat. Food does get stuck in his throat. He's been tested for cilia dysfunction previously, but it looks like we'll be referred back to the ENT to test again. It's a horrible battle. He has to count his carbs for his meal, take insulin based on those carbs, then eat the amount of food he counted carbs for. However, when he gets to where he can't swallow, it results in his having taken to much insulin. He has to take his insulin BEFORE he eats, so inability to finish his meal really messes up his sugar level!

Keeg stays tired. Although we had hoped this would clear up in a few weeks due to diabetic management, it appears that his immune system is still wreaking havoc. He is so weak, tired, even lethargic at times. Apologetic....a thousand times a day he apologizes for not being able to help, for needing assistance, or for just being unable to play and have fun.

Today was our endochronology visit. Keeg has had to come off his Lantis pen because it burns him so terribly bad. There is another long acting insulin pen out, but insurance won't cover the pen. So, we came home with actually syringes and vials of insulin today. First dose is in half an hour. I'm nervous, but don't want him to know. I've never stuck a syringe in anyone before! Thank goodness my friend is here and that she is a CNA and former EMT. I don't know how I'd do it if it were just me!

Keeg's A1C has dropped from 12  (yes, it was 12!!!!) to 8.5. So, we celebrated a bit when we heard that one! Yay!

Keeg watched a friend making a huge breakfast of hashbrowns, biscuits and gravy, sausage, eggs, toast, etc. He ran outside, sat on the steps, busted out crying and yelled, "I hate diabetes". Our friend took him to the grocery store and worked to find a way to feed him a breakfast of thing she liked, while keeping it in his carb limit. It's difficult.

We have found that Quinoa is great for him. He gets to eat what appears to be a large quantity of food, it fills him up, and it's super yummy and good for us!

We are still learning. We still goof up often (like those times we get to busy running errands and don't have food to eat). We discovered that cheesecake is a dessert that he can have, which is good because who doesn't like homemade cheesecake? And contrary to a certain Yankee's opinion (you know who you are), cheesecake with Splenda is AWESOMENESS.

We have weeks lined with specialist appointments, testing, and more. I'm holding onto my faith that God will come through and provide me with the computer jobs I need so that we can make some much needed money. He has always provided before, and I'm sure he will now.

As some of you know, we've been fostering dogs that are pulled from gassing shelters. It's been therapeutic for our family..... seeing abused, neglected, rejected and abandoned dogs. Also, dogs that have such a wide variety of health issues. Their unconditional love, in the midst of their pain at human's hands is an inspiration in itself. It has helped our family to be acutely aware of the pain many suffer, and how we can make a difference. It helps to take the attention from our own pains, health issues, financial problems, and more. Saving dogs lives touches you in a way that nothing else can.

Despite all our family battles now, we are together. We love each other. We are a team.

Nothing else really matters.

Sleep Deprivation, Low Sugar, Migraines and more

It was after 4a.m. before Keeg's sugar started coming back up. I'm exhausted. With my own health issues, sleep is so very important to keep me from flaring. Yet, sleep didn't exist but for a few hours.

Keeg has a migraine today. His sugar is still running in the 80s, even after food. He is also exhausted. Although he slept, it doesn't appear he was rested from it.

I know that in time all this will get easier, but right now it is HARD.

My heart aches for Keeg. He is trying so hard to put on a brave front and smiling face. Yet, he is consumed with one thing only, trying to eat.

I have a thousand wishes, and all of them revolve around my children and I being healthy. That's what I wish we could have.

I'm having a hard time finding the beauty today.

Low Sugar

I haven't updated simply because I can't find time. Tonight I'm exhausted and just want to sleep. Yet, Keeg's sugar tested 89. At 80 I have to actively get his sugar higher. So, I'm trying to stay awake to test again. We haven't dealt with low sugar yet. To say I'm scared is an understatement.

Keeg has had an anxiety attack, or more, each day. Trying to count carbs, juggle insulin, get full, and remember all the info we learned is taking it's toll on both of us. Add to that midnight and 3am checks....I'm exhausted. He sleeps through his midnight and 3am checks and insulin, but I have to make sure I'm up. My alarm now requires me to do math problems with no snooze option, just to make sure I don't sleep through the alarm.

My two best friends, one of which is a CNA has come to stay with us until we get it all under control. Having them here gives me a security I wouldn't otherwise have.

My dear, recently deceased friend has a young niece with Type 1 Diabetes. Her mother has shown me amazing support and I couldn't do it without her. Just knowing she is here for me means so much.

You may recall, the last blog post stated that I knew eventually that someone would say something about his checking sugar and taking insulin in public. Well, it happened. You can read everyone's responses to the situation here:

Response to "Don't Do That In Public"

Please keep us in your thoughts, prayers, positive vibes.

Home....

Yesterday we were released from the hospital. When they told me they were discharging him, I became overwhelmed with nervousness. My son was going home. My son is diabetic. He has Asperger Syndrome. He has immune system issues. I am responsible for making sure his sugar is managed and he doesn't die!

FEAR

I now know a new kind of fear. The fear that comes with worrying you'll give him the wrong amount of insulin. Worried you'll get his long acting and short acting insulin mixed up. Worried you'll sleep through your alarm at midnight or at 3am when you need to get up and check his sugar. Worried that you'll screw up and your child will end up unconscious, in a diabetic coma, or worse. That's REAL FEAR! His other health issues, though severe and potentially life threatening, wasn't like this. This is something we have to manage every second of every day. We don't, he could end up in serious condition! 

Yes, I'm terrified. I'm overwhelmed. I'm scared to death! 

My son has Type 1 Juvenile Diabetes. And I am SCARED. 

We left the hospital with lots of fanfare. All the nurses, childlife advocates, diabetic educators and the rest cheering him on. They all assured me that he would do fine. They were proud of his accomplishments and said that he picked it all up really quick. They showed me phenomenal support as we prepared to leave the hospital. Keeg of course wanted to finish his level on the PS2 game he was playing in the teen room. ;-)

We went to pick up his prescriptions at the pharamacy. Apparently insurance doesn't believe he needs to check his sugar or give himself insulin as often as he does. So, we'll have to get new scripts in 10 days and get more. Another aggravation I could do without....having to run to the pharmacy every 10 days to get lancets and test strips. *sigh

I realized as I was leaving the pharmacy that his insulin has to go in the fridge. Since I knew I wouldn't be back for several hours, I had to go back to the house to drop off his insulin. Then we headed to town. 

As we were headed to town, he reminded me it was snack time. We stopped by a store and spent a good 40 minutes figuring out what snack he could eat that would fit in his 15 grams of carb, but actually fill him up. 

Finally we were actually on our way to town to run errands. Two hours later it was dinner time and I was stumped. Where to go eat that we could easily count carbs and fill him up. Granted, we have his huge carb book, but filling him up is important as well. Someone told us that Taco Bell had a carb menu. So, we went to Taco Bell. Where we spent a good half our figuring out how to feed keeg within his carb levels and still fill him up. The girl at the register, trying to be useful, would make suggestions that she knew dieters chose, but they all had higher carb levels. We finally ordered and sat down to figure out sugar levels and insulin. 

Which is when I discovered................. I'm not the only one that gets squirmish when seeing a needle go into skin. People around us, when we got ready to give insulin, walked away or averted their gaze! One man went pale! 

Now keep in mind, we are not talking about old school syringe. Keeg uses a pen that looks like the photo below to administer his insulin. The needle is super small... looks tiny like an acupuncture needle. Yet, the effect seems to be the same. 

 I am certain at some point in time I will be told that I don't need to administer insulin publicly. I can already see it coming from some well intentioned friend or family member. Yet, I have always taught my children to embrace who they are and what they must do. Both my boys are open about their being on the Autism spectrum. Keeg has always been open about his health issues. I am open about my past experiences and my own health issues. I will never teach them to hide it, to be ashamed or embarrassed of it. Keeg has diabetes. This is his LIFE. It will never go away, it will never get better. I have hopes a cure will be found, but until then this is his reality. We won't hide it away to make others feel better anymore than we hide away that Keeg has Asperger Syndrome. These things do not define who they are, but he does embrace them as a part of who he is. Diabetes is no different. 

I am headed to a store today to find low carb snacks that are filling. To pick up glucose tablets and alcohol swabs. To figure out all that we need now just to survive. 

Keeg's sugars finally hit a normal range at midnight last night. We were so excited! A normal blood sugar!!! At 3am his sugar was 92 and I suddenly realized.... we didn't go through low sugar  at the hospital. 92 is good, but anything below 80 is not good! I started running through all that I knew to do if it dropped lower. This morning and today his sugar has remained in the normal range. I'm excited but know that maintaining a "perfect" sugar level in diabetes is difficult. The slightest thing could cause it to go high..... stress, over exertion, forgetting to count carbs or counting them incorrectly. 

The doc said their is a "honeymoon" stage where sugars stay so level that you start to think maybe you don't really need the insulin. Maybe this is the beginning of that stage. It doesn't last, but it sure would be a nice break right now. 

Keeg will be posting soon about how he feels. He's been a bit to overwhelmed to put it into words and I respect that. He wants to tell the world how he feels though, and when he does I expect that each of you that read this blog will take a moment to comment on his post. 

My son has Type 1 Juvenile Diabetes. He is strong, determined, intelligent, scared, hopeful, overwhelmed and one of the greatest loves of my life. 

Keegan, if you read this.......... I AM SO FLIPPING PROUD OF YOU!

 

Will It Always Be Like This?

We can not go home until Keeg's ketones are normal/trace. Last night they were small. We were ecstatic. We were going to get to go home! They were on their way down. This morning though, they were moderate. By lunchtime, they were back to large.

I had some dumb idea I'd catch up on schoolwork (college) today. I'm so far behind. Yet, I've been in meetings since 8am this morning. I just now got done. I've met with case managers, diabetic counselors, nutritionist, endocrinologist, doctor, social workers, and more. I've learned what to do for low sugar and for high sugar. I've practiced how to inject my son with a special needle if he is unconscious and been instructed to call 911 after. (((SCARY))) I've learned about different lancets, needles, and insulin. I'm in information overload.

My son has diabetes. Diabetes can kill.

Diabetes can kill.

My son has diabetes.

This is where I am today. Stuck on the fact that my son has diabetes and that diabetes can kill.

Stuck on the fact that his sugar has elevated to almost 400 despite getting 16 units of insulin and that his ketones are large despite his being on fluids and drinking a ton of water.

My son has diabetes.

Diabetes can kill.

Roller Coaster

 Late last night we got excited. Keeg's ketones had gone from large to moderate. Large is the worst. Normal/Small is what we have to have to go home. Moderate is a step towards that goal. I almost cried I was so excited and logged back in to Facebook to post the info.

Late last night, the full impact of all of this hit me. My 16 year old son, that suffers from immune system issues and has Asperger Syndrome, now has to deal with diabetes. He will always have to watch what he eats, count carbs, and take shots. He will always have to carry his insulin with him. When he gets sick, he'll have to check his ketones. He will, at some point, get tired of the sticks and numbers.....but his life will depend on his doing it. My son is diabetic. It hit me, and I curled up and wondered.....how will we fit this into all the rest of his treatment? How will we afford it? How will I be able to get the things he needs to survive?

I finally found comfort in the words and support of friends, and fell asleep. Somehow, I thought that the worst was over. I mean, we were in the hospital, he was diagnosed, getting insulin and his ketones had dropped. We were on the right path.

However, things were going to change by morning.

Keeg woke early a.m. with a horrible migraine. His sugar was 192......the lowest yet! However, he was so weak, nauseated, and in pain. He couldn't eat  all his breakfast and we were worried that we may have given him to much insulin just before he ate. Insulin is measured based on the carbs he eats, and he didn't finish his meal. We checked his sugar and it was 242. Even with his insulin and barely eating anything, his sugar had gone up. He was given Ibuprofen. I curled up in bed beside him and held his hand. I laid a washcloth over his eyes to block out the light. He was in pain, and there was nothing I could do.

We both fell asleep, laying in his hospital bed. At 11:10am we woke. His headache was gone, his sugar was up. He went to the bathroom and the nurse checked his ketones. They were back to large. I sat stunned. We were on our way down, how could they now be large again? Would we ever get to go home?

Then, people begin to arrive. Keeg's brother and sister came to hang out. About an hour later his grandparents showed up. Then his friend Amanda came. Everyone had fun hanging out, playing games, and just chilling. We talked about diabetes and what we had learned. We discussed different treatment plans that my dad had, and how others they knew managed theirs. Although the topic of conversation was different, everything else seemed........ NORMAL.

Everyone has gone home now. Keeg is settled into his bed with a PS2. He's talking to his best friend Matthew while he plays video games. His energy level is better. It's almost time for his nightly dose of Lantas, a long acting insulin. They are increasing it tonight based on his morning episode as well as his last two nights breaking out in a sweat and feeling like he was going to be sick.

They may also be increasing his Novolog insulin, which is the immediate acting. We're learning alot, but there is still so much more we need to know.

Today has been a roller coaster for sure!

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.

Update Feb 13, 2012

I've been waiting to tell others about Keeg's latest issues until we saw his neurologist again. Today, we saw the neurologist.

Over the last couple of years, Keeg's health has not improved past a certain point. He stays tired and weak. Playing only a short time requires hours of sleep to recuperate. He's also moved from the 36^th percentile in height to the 76^th percentile. He is now 5ft, 81/2 inches at 14 years old.

Over the last year, his emotions have started to suffer. He is unable to identify emotions, unable to control emotions, and struggles with feeling overwhelmed. His social skills have regressed and he was recently diagnosed with Asperger's.

Over the last few months, Keeg has been losing his mental abilities. He had started doing Trigonometry at the end of last school year. Now he struggles with math he was able to do easily a few years ago. His reading comprehension has steadily gotten worse. His speech has started slurring on and off over the last two weeks. Today, he struggled to read a simple devotion. Keeg taught himself to read by the time he was 2 ½ years old.

For 4 months Keeg has had an ongoing headache. The pain fluctuates between a 5 and a 10 (on a scale with 1 being least pain and 10 being most pain). His severe migraines that land him in bed for 36-48 hours have decreased to aprx 4 a month. Keeg was prescribed Depakote to help with his migraine.

Two weeks ago Keeg started having chest pains. With his Situs Inversus (internal organs on opposite side of body) and the possibility of Marfan's Syndrome this requires a referral to a cardiologist.

As for his regression in mental and emotional abilities, I was told that this has been seen often in cases of long term immune system issues. There is no clear answer on how long it'll go on, or even how much worse it will get. Until we get him in with the geneticist, there isn't really much that can be done. We've been on the cancellation list for some time now, but still haven't gotten the call about an appointment.

The doctor did prescribe a medication today that he hoped would slow down Keeg's regression. Vayarin is Omega-3s and Polyunsaturated Fatty Acids. In addition to possibly slowing his regression, it will also help regulate his emotional state. It will help him sleep also. This medication is a good fit for his symptoms and there are no significant side effects. However, neither our CareMark Prescription Drug Insurance or Medicaid will pay for this medication. The cost is $75 a month. There is not an alternative available or a generic.

Right now, I'm completely overwhelmed. I'm supposed to just sit and wait while watching my son fall apart. How do I sit every day and see that he is getting worse and worse and do nothing? This is the hardest thing......not being able to help your child.

As Matthew West said in the song “Strong Enough”, “Hands of mercy, won't You cover me? Lord, right now I'm asking You to be strong enough, strong enough.....For the both of us.”

Newly Diagnosed

The following post was copied and reposted from pathsfrommysoul.blogspot.com   It's insight on how I handled Keeg's diagnosis.



Yet now (finally, the meat of this post), I don't think any of us know what to do with the latest diagnosis. Not of Pookie, but of my eldest son. You see, Keeg has, up until recently, been the perfect and most exceptional child. I know you think I'm biased (and I am) but there was just so much about him that was unique. At 2 1/2 years old, he taught himself to read!! I was teaching him letters and sounds and he already was reading Doctor Seuss books. By the time he was in Kindergarten, he had already tackled his first Isaac Asimov novel (not an easy read for many adults even). He was super bright when it came to intellect and I watched him carry on conversations with his medical specialist that blew everyone in the room away. I can not tell you how many times someone told me that he was the smartest child they'd ever seen. I was PROUD. It seemed like no matter all the wrong I'd done, I'd been blessed with a child that was an enigma. Keeg always battled some pretty severe health issues, but his behavior was always above and beyond. He was the child you look at in the store and stop the mother just to say, "You have the best behaved child I've ever seen". He was the child you told once and once only. He was the child who always seemed to know who was upset and would ask what was wrong. He was the child who always did his schoolwork, always kept his room clean, and always ate his vegetables.


A year ago I started having issues with him. He was always reading. He'd read the tags in laundry, he'd read the labels on the cans in the pantry, he read and read and read. He could no longer complete tasks or chores because he stopped to read everything. I even caught him a few times reading the garbage in the kitchen can. He'd walk by and it would catch his attention so he'd stand over the can, peering in and reading. I would have to tell him over and over and over again to do something before he would complete it. He would tell me he didn't hear me, or didn't remember. I would ask him to complete a chore and hours later would be appalled that it wasn't done, even after he told me he completed it. He'd walk into the room, look around and dumbfounded ask me, "what else needs to be done?"  I was at my wits end. How could the once perfect child suddenly be this rebellious, disobedient teenager?? I talked to friends with teens and they assured me that this was just part of growing  up and eventually (albeit a long eventually) he'd outgrow his rebellious streak. How did I not see what was really happening?


About 4 months ago, Keeg and I were home alone. I told him that I was going to give him a chore and I was going to observe his completing it. Each time he stopped to read, I would redirect him. He was to try his best not to read, and if he read something and I didn't notice, he needed to tell me. About  3 minutes into this, he was crumpled on the floor, tears streaming down his face, his hands pulling at his hair, and saying, "I can't do this! I have to read! I have to! I have to!" I sat, completely blown away. The agony in his cries froze me. Something was wrong....terribly wrong....and I didn't know what it was.


I talked to several professionals I've become friends with through the years and heard lots of different ideas. I decided that the first step was to get him in with a professional therapist. Someone that would address the needs of our family and help Keeg deal with the stress he was going through. I got a referral from a friend and set up our first appointment. The doctor had me feel out a bunch of assessment forms online for Keeg so that he could review them before our appointment. When my husband and I went to meet the doctor, he handed me a scholarly article to read about Asperger's. Confused I looked at my husband. Why would he give me this when I'd already told him our youngest was diagnosed with High Functioning Autism and not Asperger's? The doctor let me know that the information wasn't for Pookie...........it was for Keegan.


The foundation of my world shook. Reality started to spin and meld. I sat in the midst of the chaos, frozen in a warp that wracked my awareness of all. This isn't what I was supposed to hear. I was supposed to be told that he was ADD with maybe some OCD. That's what I was prepared for. Asperger's??? NO NO NO....my youngest son is on the Autism spectrum....not my oldest! I pushed myself to read the article he had handed me, floored to find out that it addressed how it's actually COMMON for children with Asperger's to not be diagnosed until they are in their teens. I managed to make it through the appointment, and back out to the truck. My first words to my husband after we pulled away was, "How could I have missed this?"


I grew up with family members and friends that had special needs. I went to college for Early Childhood Education with a special interest in Special Needs. I've volunteered, helped out and fund raised for various organizations that help with Special Needs. I've spent the last 5plus years studying Autism Spectrum diagnosis, Asperger's included. And then the lighbulb went off............how many times did I pull Keegan over to me while researching and say, "Hey, this sounds like you!"


Looking back..........I missed so much. The way that Keegan never really cared much for affection. Yes, he'd let me hold him, hug him, and give him kisses as a child. But deep down I always felt that he was only tolerating it for my benefit. The way that his room always stayed so clean because he didn't really own much of anything. He would always ask me to give his toys to children that didn't have any. Proud as can be, we'd do so. It's only in hindsight I see that it was because he didn't care for the typical toys children played with. His room has always been minimal in decoration and toys. For as long as I can remember he's only wanted an alarm clock with radio, a lamp, his hotwheels and a chess set. Looking back, I can see how unusual this is for a 5 year old.....but at the time I just saw it as a sign to his immense intellect. Keegan has always been particular about his clothing. He has always preferred khaki pants and shorts after he went to a charter school that required school uniforms. He likes long socks with the tops pulled straight up his legs. Keegan never really had any sense of style, but being a single mom that didn't really have any other Dads to chat with, I just thought it was a guy thing. There were always gross motor skill delays and clumsiness...........he had really big feet and I chalked it up to that. I never noticed that Keeg didn't recognize personal space until he was older. When a small child sits down immediately next to someone, it's cute. It's not a red flag that he doesn't realize that people have personal space. Keeg has never known a stranger.....NEVER. It's not uncommon for his interactions with someone to start off with 20 questions. I just thought he was curious and trying to feed his intellect. When my husband and I married two years ago....Keeg had pretty much spent his life caring for me and his little sister (due to my own health issues). He'd been the man of the house. My new husband, his now step-dad, sat him down before our marriage and told Keeg that he was proud of him for all that he'd taken on through the years. He was proud of him for the way he took care of me and his sister. Now, he could just relax and be a kid! He could play and have fun. Once Keeg accepted this, play he did. My husband asked me then if I noticed Keeg's play. Did I notice that he played like a young child? Did I think there was something wrong? Did I notice that Keeg had gone from one end of the extreme (never playing) to the other end of the extreme (continuously playing)? Did I think it unusual that Keeg's imaginary play was immature yet intensely intelligent at the same time? Nope.........I didn't think there was a problem. He'd spent years taking care of me and his sister and now was just letting out all those years of pent up play. Besides, he was altering his play to match that of Pookie to help keep Pookie entertained. He just continued the same games when Pookie was otherwise entertained, right?


I could go on and on. You see, I've had 3 weeks and 2 days since the first doc told me he thought Keeg had Asperger's. Since then we've met with a pediatric neurologist who has all but confirmed the original therapist ideal. He's scheduled the appointments necessary to get the "official" diagnosis. Keeg was admitted into the hospital for unrelated tests, and numerous nurses and therapist he came in contact with assumed he'd been diagnosed with Asperger's long ago. (My mind screamed REALLY? REALLY? REALLY? the entire time). A child life specialist told me that her brother has CP and mild mental retardation and that Keeg reminds her so much of him. She said their mannerisms are identical. She said this with the sweetest affection for Keeg and her brother that I was deeply moved, yet inside I could feel the vibrations resonating through my body as my brain screamed "WHAT? MY SON? HOW DID I MISS THIS?"


Thursday, Pookie went for another evaluation with a speech therapist. I had to meet with the OT there so when Pook didn't want to go back with the therapist alone, I sent Keeg with him. When it was time for me to meet with the therapist, she wanted to make sure I'd realized that Keeg had special needs as well. Again, my mind screamed "DID EVERYONE SEE THIS BUT ME?"


There are always times in a parents life that you feel like a failure. That there were things you missed, things you should have done differently, things you should not have done at all. Yet, I can honestly say that nowhere in my 14 years of parenting have I felt so totally off the mark. My son has lived with me for 14 years....his entire life....and despite all my knowledge and training, I missed that he has Asperger's. I don't care that it is COMMON for children to miss diagnosis till teen years...........THIS IS MY SON. My firstborn. It makes a difference somehow.


Each day I make so many mistakes. I am trying so hard to change my perspective, to see Keeg as who he is and not what I always dreamed he would be. I'm trying so hard to realize that I'm in Holland and that Holland has so many things to offer (click on the blue word Holland if you don't know what I mean). I have to stop myself and apologize a thousand times each day because I realize I reacted to him without realizing his actions weren't intentional, that he didn't understand, and that he was doing exactly what I said just as literal as I said it.


I try not to think about his future right now. Don't get me wrong.......I'm doing everything I need to so that he gets the best of everything and reaches his full potential. I know that he can still be and do anything he wants to and that Asperger's is not a limit on this. Yet, since before he was born I'd dreamed of his future. When he was 2 he told me he wanted to be a doctor and didnt' sway from this except for when, at age 4, he decided to be a missionary. He talked of working at NASA so that he would have the means to reach the goal of missionary doctor. Those dreams haven't changed...........but the paths to get there are forever altered. It's not a bad thing......... but change is always hard for us adults. Selfish as it is, my life was always so chaotic there were only a few constants I felt I could depend on and those were God and my children. That hasn't changed.....but for me to be the mother Keeg needs, I have to change my entire perspective and outlook. I have to let go of my dreams to visit Paris and find the beauty of Holland. Ironically enough, when I read "Welcome To Holland" the first time I didn't really understand the full impact of it. I'd known since I was pregnant with Pookie that something "wasn't quite right" and the moment he was born it was obvious he had some type of special needs. I read "Welcome to Holland" shortly after Keeg's initial diagnosis and suddenly it all made sense.


I know that through all these things God will make sure our needs are met and dreams fulfilled. This is going to be a beautiful and joy filled journey. Yet, we all must mourn the things in life we have lost..............even when the door God has opened for us is so much more beautiful, amazing and breathtaking.