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!