Monday, December 30, 2013

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

Thursday, October 17, 2013

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.

Saturday, September 21, 2013

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.

Friday, September 20, 2013

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.

Wednesday, September 18, 2013

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!
 

Monday, September 16, 2013

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.

Sunday, September 15, 2013

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!

Saturday, September 14, 2013

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. 


Friday, September 13, 2013

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.

Tuesday, February 26, 2013

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