Thank You for Saving My Son

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.

April is Autism Awareness Month

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!

He 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.

Asperger Suicide Rates

The results are in. A study in the UK has shown that 66% of people with Aspergers are suicidal.(Stats show only 17 % of the general population and 59% of those with diagnosed psychosis are). Of the 66% of people with Asperger with suicide ideation, 35% have planned or attempted suicide. 31% reported depression. It was unexpected that more people reported lifetime experience of suicidal thoughts than were depressed.    

What about children? Although the studies are still few and far between, studies have shown that children ages 1-16 with Autism have suicide ideations or attempts. 

There are a variety of ideas as to why those with Aspergers are ten times more likely to have suicide ideation than the average person. Everything from social isolation to inability to understand emotions. 

As a near-typical I can't say that I understand or know the answer. However, as a person that loves many Aspies, it appears to me that it may be due to their knowing exactly how unique they are. They see the world completely different than neuro-typs. As a result, they can not understand how people can wear blinders, be cruel, not pursue their own happiness, and more. Constantly bombarded with other people's trivial thoughts without being able to understand why people are "fake"...... and even if they do understand the logic of it, it still isn't anything they can do. 

You see, the Aspies I know don't think they belong here. They don't feel they will ever fit in. 

I hope they never do fit in. I hope they stay right here walking among us and showing the world how we are supposed to love and embrace empathy. 

Without a shadow of a doubt, I know that my life is enriched and that I am a better person simply because I know an Aspie.

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)70248-2/abstract?cc=y

http://www.sciencedirect.com/science/article/pii/S1750946712000931

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)70248-2/abstract