Tuesday, April 7, 2015

The Scariest Journey

In three months my disabled son will turn 18.

For almost 4 years I have struggled as a single mother with my own disabilities to raise three children completely alone. Two of those have special needs.

In three months my disabled son will turn 18.

He stood to lose his medical insurance at that time.

His medical bills have topped 1 million dollars a year in the past. His prescriptions, including insulin but not including diabetic supplies, are over $2k a month. This only includes the ones his insurance covers.

I've spent almost 4 years trying to figure out how to keep the power on and how to keep us in our home. I resorted to loans over the last 10 months that put me in debt for the first time in my life.

I live in a state that does not have resources to help provide the care that my children need. The eldest will qualify only for 4 hours a day, 5 days a week assistance in many areas he needs help with. Even then, it's debatable if he'll get qualified.

He stood to lose his medical insurance.

He has more doctors and specialists then I can count without resorting to a pre-made list.

His medical records would fill any file cabinet you have in your home.

He stood to lose his medical insurance.

Pause a minute. Look at your child. Imagine the impending doom that comes with the knowledge that, without medical care and medicine, your child will die. Imagine the fear that comes with the ticking clock, counting down each day, knowing that soon that may be the situation you are in.

Imagine the options that you consider in those situations. The sacrifice you and your child would need to make just to ensure medical care. The rift that would be created. The emotional damage that would be done with having to choose to place your child elsewhere.....your firstborn....just to ensure his survival.

I can not begin to put into words the agony I have been through. The tears, the fears, the stress of having to put on a brave front for the world while realizing you stood to lose that which you hold most dear. Never being able to speak your fears, simply because they were to horrendous to voice.

Yesterday, our three year journey of trying to ensure he would keep his insurance ended.

Yesterday, our three year journey of attempting to get our government to recognize him as disabled was a success.

Three months shy of his impending doom, we prevailed.

Under the stress of the last three months, I broke. I came to the point where my fears overcame me and I felt I could not take another step. I contacted my college instructors and told them that I had to drop out, despite my being only half a semester in three classes away from graduation. I had weeks left to graduate, a straight A average, yet couldn't take another step.

In despair I drew away from most everyone I knew. I snapped quickly and found myself on an emotional roller coaster that made me feel insane.

I lost motivation to do most everything and each day merely went through the motions.

I stood to lose my child. My choice was either death through lack of medical care....or placing him with someone else. I would have opted for the latter, and lost my heart in the process.

If you had asked me at 15 where my life would be at 38, I would have told you I'd be happily married with a slew of children running around.

Things don't always turn out the way you plan.

My instructors ganged up on me. They pushed me to finish, knowing I was so close. They encouraged me, extended deadlines, and opened up opportunities to maintain my grades. I honestly feel like they carried me when I could no longer take another step. They are true champions and heroes. God knows community college instructors don't get paid enough to become someone's personal coach. Yet, they did. The entire rest of my life I will remember what they did for me.

My friends stood up and let me vent, sometimes for hours. They endured my ramblings about things that didn't matter as I strived to keep my mind off the things that did.

My boyfriend looked at me often in confusion, but bit his tongue and stayed a means of support even as I shoved him away due to his lack of understanding my turmoil. He couldn't relate. His life has never seen hardship such as that I have endured. His compassion endured.

My children, frightened by my fluctuating emotions and their lack of understanding (because you can't tell your children your fears), rallied around me. They expressed their love even when I must have seemed unlovable. They increased their efforts to behave and help out around the house. They pushed themselves extra when I couldn't take another step.

There are many evils in this world. I've seen them, tasted them, felt them. Life can be cruel.

Often, there seems to be no hope and you breath the darkness in with a suffocating thickness.

Yet, somehow, even when you've lost sight of it, there is always a light at the end of the tunnel.

My son will have medical coverage. His future is assured.

There will be those that will read this and be infuriated that their taxes are paying for my son to stay alive. They will argue that Social Security and Medicaid is merely a drain on a system already bogged in debt.

Yet, each day my son will awake with breath in his lungs due to that system.

Each year I will bust my ass to give back to a system that is keeping my child alive.

I see our system's flaws in each child that dies of hunger. I see our system's flaws in the elderly that freeze to death in the winter. I see our system's flaws in the mentally ill that die, abandoned and alone in alley ways. I see our system's flaws in the domestic violence victims that are killed by their abusers. I see our system's flaws in the faces of those traded for sex, or sold into other types of bondage and slavery. I see our system's flaws in the hard working two parent homes that still can't afford insurance. I see our system's flaws in the mother that feels ashamed when her child's meals are paid for by the government.

Yet, yesterday, our system prevailed. Yesterday, the system so many complained about SAVED MY SON'S LIFE.

And I am eternally grateful. I am eternally relieved.

You see, when the system you live in stands up and assists you to survive, you learn a sense of gratitude that will live within you every single day of your life.

You learn to give back in ways that create a better system, a more humane system, a system that works.

I am beyond blessed. My child has an opportunity to live at home, with his mother and siblings that would walk through hell and battle Satan himself for him. My child will not have to worry about running out of insulin. My child will not have to worry that he can't get the care he needs.

I am beyond thankful that I was born in this country.

I am beyond thankful that my child will live because he was born in this country.

I am beyond thankful for those that are in positions to work and do so. I am beyond thankful that their hard work is keeping my child alive.

I am even thankful to those that would scorn him this benefit and complain of their hard earned taxes going to pay for my child's life.

Thank you. Thank you to the instructors that go out of their way to ensure someone is successful. Thank you to the people that show compassion and give support even when they don't fully, or even at all, understand. Thank you to the attorneys and judges that spend their days pouring over medical files they do not understand nor comprehend, yet research so that they can. Thank you to the able bodied that work. Thank you to those that show charity and give to others. Thank you to the fathers that actually take interest in their children and aide in their support. Thank you to the mothers that do the same. Thank you to the parents that share their struggles so that others know they are not alone. Thank you .... thank you .... THANK YOU.

Because, I could have never done this alone.

My family would have never prevailed alone.

I am indebted to each of you.


Thursday, April 2, 2015

Autism Awareness 2015

Are you on the spectrum? Are you the friend or a family member of someone on the spectrum? Join us at Aspie Life !


April is Autism Awareness Month.

Both my boys are on the spectrum.

I could list here all the different aspects of Autism.... the characteristics, the hardships, the differences, the variations, etc.

Those you can find on Google.


My eldest son is an amazing young man. He has more compassion for people than I have ever seen. I look at the great prophets and saints recorded throughout history, in various religions and various chronicles, and I'm certain that my son ranks with them. Never has anyone loved, cared, felt so deeply. OK, well, maybe not "never", but most assuredly not often.

He is very very intelligent. Math in his head..... photographic memory...... figuring out complex issues without a second thought. He will look you in the eye when speaking to you. He will smile, and laugh.

Yet, life is difficult for him.

Each task that he has to accomplish must be broken into the smallest of steps. "Task Analysis" is the term used for this. Let's use brushing your teeth as an example. For you and I neurotyps (stands for neuro typical.....meaning we do not have Autism), it's a one step process, isn't it? Not so for those on the spectrum. Brushing your teeth consists of multiple steps. A task analysis for teeth brushing looks like this:

Pick up your toothbrush
Turn on the water
Rinse your toothbrush
Take off the lid of the toothpaste
Squeeze a small bit of toothpaste on your toothbrush
PUT THE LID BACK ON THE TOOTHBRUSH
Begin to brush your teeth
Brush the back inside teeth
Brusth the back outside teeth
Brush the front inside teeth
Brusth the front outside teeth
Repeat process
Rinse toothbrush
Put toothbrush back in the toothbrush cup
Turn off the water


15 steps just to brush your teeth. How many steps do you think a task such as showering has? Or, what about cleaning a bedroom? Cleaning a kitchen after a meal has been prepared? Getting ready for school? Yeah, it can be overwhelming.

Another obstacle is the fact that, for all outward appearances, he looks "normal". Sure, his clothes may be mismatched, inside out, buttoned wrong or untied. His hair may not have been styled and he may not have brushed his teeth. He may have forgotten his glasses and therefore is squinting to see. Yet, he looks "normal".

So, when you use sarcasm, and he doesn't realize it, you may think he isn't paying attention. Did you roll your eyes and yet he didn't seem to notice that either? Did you change the tone of your voice to sound stern, yet that didn't cause any effect? Have you placed your hands on your hips to make your point, yet still he doesn't seem to care?

He does care. He can't read facial expressions, tone, inflection, body posture and the like. When speaking you must speak truthfully, directly, and without vague references.

He battles Obsessive Compulsive Disorder. He has a level of perfection in his mind that he must achieve. Accepting anything less is very difficult and only achieved with outside intervention.

He's also Type 1 Diabetic and although he's a pro at counting carbs, he can not remember when to check his sugar, to check ketones, or when he must have a site change. He can not make executive decisions in situations where one has to look at the totality of the situation to determine if one should treat a low, take more or less insulin, or eat a meal a bit early. Carbs are carbs and he can't understand how some carbs can impact him so negatively, while others do not. Due to his sensory issues, he is not able to "feel" his highs or lows. Thus, he has to check his sugar, with reminders from others, every two hours.

"Micro-manage"....that's the word we use. For tasks to be completed, they must be micro-managed. We've learned ways to be successful, but it takes much more effort than one could ever imagine.

He won't be able to live independently. This is a realization I only allowed myself to accept most recently. When I spoke to him about it, he had realized it long before. He knew that diabetes, added on top of his Aspergers and other health issues, altered his life. I struggled with accepting this much more so than him.

Do I mind that he will always live with me? Not at all. I love my son and will champion him and fight for him more than anyone else. I enjoy his company, and he constantly is able to remind me of what really matters (compassion towards others). We'll travel to wondrous places and conquer dragons. It will be a good life.

I struggled to accept it because, as with most things, I had a mental picture of what his future would be. It was different then what it is. It isn't worse or better. Just different. Sometimes we all have trouble accepting different and change. I'm working on wrapping my arms around the new picture and loving up on it!

Keegan doesn't have many friends. The ones he do understands that he processes information differently and therefore have adapted to make things easier for him. The friends he does have are the truest and purest kind that understand different is not wrong. They are true champions as well. They remind him to check his sugar, listen as he talks for hours about his single interest, and get him to eat when he feels to bad to do so.

The college he attends has gone out of their way to meet his needs. He has a tutor, as well as two instructors that meet with him to help. They remind him to do sugar checks, to clean up his messes, and to eat regularly. They pay attention if he starts to get a little foggy headed, know emergency numbers, and where his diabetic supplies are. They open their offices regardless of their schedules and have truly become a great support system.

Depression and anxiety are constant companions. His high intelligence level makes him aware of what is considered "normal". Although he knows what others perceive as "normal", and what he would have to do to be that way, he can not do those things. As a result he feels he doesn't fit into this world. He gets frustrated because he can't seem to accomplish the things he sets out to do. He is saddened that other people get angry with him, when he intended no harm. It hurts him that others assume things about him based, not on who he is, but on what their perception of normal is. He becomes anxious around new people, or in crowds.

The truth is, if we, society, changed our perception of what normal is, his life would be easier. If we could understand that those on the Autism spectrum are literal and honest, his life would be easier. If we could quit judging those that dress different, act different, or even look different, his life would be easier. If we were to be straightforward and honest instead of hiding behind falsities, innuendos, and subtle hints, his life would be easier.

April is Autism Awareness Month.

What can YOU do to make a difference?

Reach out to those that have Autism. Take the time to get to know them. Learn how to effectively communicate with them. Become their friends. Friendship is give and take. They will give more than you can comprehend initially. Let go of your preconceived ideas and act on love.

Remember, every single person with Autism is different then the next person with Autism. There is not a mold. Each are different. Get to know them and be their friend.

I promise, it will be worth it.




*Are you on the spectrum? Are you the friend or a family member of someone on the spectrum? Join us at Aspie Life !

Monday, March 30, 2015

Update....

Through the months, many have asked why I do not blog anymore. In all reality, lack of time was my primary reason, however, after spending so much time catching everyone up via email and FB, I think blogging is less time consuming!

I'm going to change things up a bit and just do a brief outline with more details coming later. I'll break down the individual points into more detailed blogs later.

Also, I'm going to veto keeping the children's individual blogs updated and put all the information here. You'll be able to search the blog via keywords though.... so if you are here looking for info on diabetes, just search for that word.


First, let's address the children.

My eldest is in his second semester of college and is doing great. Due to his Aspergers, we had to obtain him a tutor that would prevent him from doing too good of a job. Yes, you read that right. He would fixate on making his work perfect, and in 3D modeling perfection can be very time consuming. His tutor tells him when it's an "A" grade and time to move on. Well, his tutor is very helpful in other ways as well, but that was our initial reason for acquiring a tutor.


In addition, his Type 1 Diabetes is still difficult to manage. It's never easy having Type 1, however the Aspergers means he's unable to make executive judgement calls when it comes to managing his diabetes.   Due to his being so skinny, his CGM (Continuous Glucose Monitor) isn't effective and gets false readings regularly. I'll explain this more in a future blog.

Also, another diagnosis of chronic depression and anxiety has come on board resulting in our finally opting for medication. We're only on week two, so we'll see how it goes.


My middle child, as always, is excelling. I'd lose my mind without her. She has so much responsibility yet takes it in stride. She is a straight A student this semester and is working towards her dreams. Her dreams, although the same since 2 years old, have changed. Instead of being a veterinarian working with abused and neglected animals, she intends to be an Animal Behaviorist rehabilitating abused and neglected animals. Yeah....that's MY GIRL! :) I have no doubt the change in her interest came as a result of our having to put down a dog that had killed two dogs and injured two others. Rehabilitation services would have costed us $5k that we didn't have, and didn't seem to be able to raise. It impacted our entire family deeply and was the stimulus to alter her focus.


My youngest, well, he's still high maintenance. He's always moving though has slowed down some due to a back injury. Raising him is a tough job, and many days I'm dumbfounded by his perfect logic. Of course, perfect logic doesn't fit into this society so it's often difficult for him to comprehend what is considered appropriate and what is not. I often hear him say that he wishes he were not Autistic. :( Again, more details later.

Now, as for me......... I have a new diagnosis that consists of nerve damage in my arms/hands due to inflammation within the elbow. It's very painful and driving, typing, writing and any repetitive hand/arm movements make it worse (another reason I've not blogged as much). I have to have an EMG done, which is a test I swore a decade ago I'd never have done again. It's painful, and no fun, but we have to determine the extent of the nerve damage to determine how to proceed.

Nothing else has really changed health wise. My MCTD still kicks my butt. I still have to spend entire days in bed and watch my house fall apart. I still end up in pain that is so bad I would crawl into the Grim Reaper's embrace should he appear beside my bed at those times. I still look for the beauty in every day and cling to that beauty as my "happy thought". I still laugh about it, cry about it, and wonder why I can't remember what it felt like not to be in pain.

However, I graduate this May. It took longer then it should have, and lots of extensions from various instructors, but I did it. Yep, I'll be graduating college! I also am going to be starting my own business since my health and my children do not allow me to work a 9-5. I have an investor that will make this possible and I'm beyond psyched.

Also, I've been in a dating relationship for almost a year. You may have seen me write about dating with chronic illnesses, and/or dating with children with special needs. Maybe you've read what I've written about dating when you suffer from PTSD due to past abuse. Let me assure you, it is not easy.  However, I feel that I have grown more in my time with him then I have in the last couple of years. I've written before about how I felt I had hit a plateau in my personal growth as I wasn't able to put what I'd learned into practice. Well, now I have and it is a hard road. Yet, nothing that I've ever had in life that was good came easy.


He and I work. We are good for each other and when we set our minds to it, we make an amazing team. He gets along well with the children.

He doesn't understand me. He's had an easy life. He wears beautiful rose colored glasses that leave me amazed, dumbfounded and even infuriated at times. Yet, his rose colored glasses are helping me to remember that life isn't difficult for everyone and that is a big part of why some can't understand the struggles of others. His rose colored glasses keeps me from hating mankind.

His rose colored glasses also help me to see things from a perspective I was never afforded. He believes in things I deemed impossible before I was even out of elementary school. He tells me that he is a realist and I believe in fairy tales. Yet, in my mind, I see him believing in fairy tales and I the realist. You see, we balance each other out and each bring to the table something that the other hasn't been exposed to.

I always thought I had to be with someone that had been through horrible things. How else could he understand me? Yet, this relationship has taught me that I was wrong. Don't get me wrong, he's not perfect, and he has plenty of baggage from his past relationships that he is working through as well. However, at the end of the day, he doesn't have to understand me to love me. He doesn't have to understand me to support me. Just as I love him and support him yet can't understand how he can wear those beautiful rose colored glasses, he can love and support me without understanding why I view life as a dark journey where one must actively seek the beauty.

Opposites may not attract, but they can co-exist together. It's a difficult journey, but, in our case, is having the most magnificent results.

More updates coming soon. I know that there are many that come to my blog because they want to know they are not alone. Those that come just to read my struggles with chronic illness. Those that come to read about raising children with special needs children. Those that come to read about PTSD. I know that I clammed up over the last couple years, and left a lot of people feeling abandoned. I didn't speak out much about what caused that to happen and in all reality, not quite sure I want to now.

However, I will make my best effort to be there NOW. I can't change the past....but I am always changing my present and future.

As always, to all those that are recovering from substance abuse, have survived rape, gang rape, domestic violence, child abuse, molestation, religious abuse and the like.... you CAN move forward and have good things in life. Keep your chin up. You are worthy.

To those battling chronic pain and chronic health conditions.....you too can have good things in life. Don't give up. Fight the fight with every breath. You are stronger than you believe.

This one is for the full time single parents raising children with special needs......that would be the parents that do not get time off when their child visits the other parent, nor do they get child support, nor do they have family support to assist.....there doesn't seem to be many of us out there. Our lot in life is unique. No one else can understand what we go through and each time we hear people tell us we are an "inspiration" or "a superhero" or "amazing", we secretly want to punch them repetitively in the face. Remember that you aren't alone. I'm here and I know your struggles. I know the tears you cry, the times you hide in your shower, and the times that you are certain you will die from exhaustion. If you, like me, suffer from your own health issues on top of it.....well, we are a very elite group that are scattered around the globe. Just remember, you aren't alone. Never alone. There are always those that look up to the sky and wonder if anyone else knows what they feel like. And the answer to that, my dear friend, is yes.




*****All photos courtesy of Rena Linder******
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