Saving the World: One Post at a Time

As a child I dreamed of saving the world. I thought that I would enter the peace corp and try to make a difference on a grand scale. After years of mental, physical, and sexual abuse, my drive to make a difference was depleted. I think I entered a self preservation mode for many years. How could I help others when I could barely get out of bed myself? In life I settled for the simple and whatever would keep my demons quiet. On the show Buffy: The Vampire Slayer there was an evil that wanted to rise up. The statement from that was: "From within it devours." That statement has stuck with me for years now. For me it has a significant meaning. My depression eats me from the inside out. Over the years I settled to become a special needs mom and battle the daily struggles my children face. If you are wonder why I say settled, I will tell you. This was not the grand scheme I envisioned for myself. Fighting for my children and their successes comes as natural as breathing. I still dream of making a difference in the lives of others. When I am dead I want to be remembered as the one who tried to make a difference in the lives of those I encountered. Through the abuse I came out stronger and more determined than I ever dreamed to be. I have the ability to help others by telling my stories and getting them out there for the world to see. If through me another finds an ounce of strength that they were lacking then I have accomplished something. At this stage in life I refuse to allow self sabotage to come into play. I plan to save those I can one post at a time.

To Be a Conquering Champion

From the moment of each of my children's conceptions I loved them more than life itself. I love each of my children differently and equally. My youngest son needed not only a mom but also a champion. He is mentally challenged and nonverbal. You might ask, "if he can't talk how are his needs met?" It's really simple. I am his voice. He has been mine for 9 years and I know him as no one else can.

Our battles are truly beginning. The school has been fighting against what's best for him for their best interest and not his. Rather than comply with instructions from his only caregiver they seek to bring others in that care nothing for him and where he will end up. Well we are finished with what they think is best. I am the mom and I wear the pants in this relationship. Either they join our side, which is his side, or get out of our way. He will get the education he deserves and is in his constitutional rights. The passive mom is gone. Now they get the warrior mom who will take no prisoners.

The Devastating Reality in Our Life

Monday, February 9th, 2015, started out like any other day for me. I had found my calm about Kaden and his disability. I had adjusted to the nearly daily calls from the school because his behaviors had escalated at school and they could not keep his violent tendencies muted. I had went to work that morning like every other Monday. We finished the job a little early and I was heading home. I received a phone call and the guy had introduced himself as a crisis counselor. I heard the words "Kaden" "cops" "mental facility" and the rest of the conversation seemed to be drowned out. I screamed at this man over the phone, "Do you people not realize that he has the mind of a three year old?" It was at this point that I realized my hands were tied on what I could do for him legally. I arrived home and called the hospital. I was told that they were currently processing him and that they had to hold him for 24 hours because he had become a threat to himself and others. When he saw the doctor the next day, the doctor could enforce a 72 hour hold and I could not see my child until Wednesday. I was encouraged to bring him certain items to make him more comfortable. I was made at ease to know that he was calm and didn't appear scared. For the next hour I had to reign in the rage I was feeling towards the school. How dare they not call me! I know my son and I could get him to calm down! I am his mother! I drove to the school in the rain shaking and fearful of what they might say when I got there. Once at the school I spoke with the ESE lead and the principal. They told me that he was agitated from the time he stepped off of the bus and until the crisis counselor took him away. Around 11 am Kaden threw a chair at another student. The teacher had the aide remove all of the other children. He broke apart an easel and had a metal pipe in his hand by doing so. Before his fit of rage was done five people were called into the room to diffuse the situation. I had informed the school that the more people that are around him when he turns violent the more violent he will be. People seem to fuel his rage. It took them an hour and a half to get him calmed down and not once did I receive a phone call to let me know that he was having a crisis.All evening all I could think about was how upset and scared he must be. He would feel like I had abandoned him. I cried until I realized I had no tears left inside of me.  He was released from the hospital on Tuesday. I had never been so excited to see my little boy. I asked him if he had been scared and he told me no. I have come to the realization that this will probably not be the only time he sees a hospital for these reasons, but I will be damned if I don't fight for him and to keep him out of such places.

A New Day Dawns and a New Journey Begins

On Wednesday, January 21st, 2015, my hope for my son, Kaden was shattered. I was under the impression that he was autistic. With the autism diagnosis there was hope that he could outgrow some of the issues he has. On this Wednesday I was told that he was intellectually disabled, which means he is mentally retarded. All my hopes and dreams for him came crashing down. He will never grow up. He will never drive a car. He will never get married. He will never have children of his own. I questioned for weeks the mean of his existence. His existence is a means for many to point and laugh at his struggles and failures. I raged about the unfairness of it all. I didn't sign up for this. This was not the life I had planned for him or for me. I screamed that he deserved the life of any typical child. What did I do for us to deserve this? The answer was, "Nothing." We drew the short straw in the genetic lottery. I was preparing to train my younger daughter for the day where she would assume the responsibility of taking over his care when my time ends. The specialist told me that I was putting limits on her life also. She deserves the life she wants and can have. In short she can have the life that was denied for him. I was told that I needed to live a life outside of Kaden. I needed to learn to live and not exist to maintain his needs.

One day I had taken my kids to the park. There were other kids there playing. Kaden was in a mood and wanted to scream about everything. A dad scolded his son for being mean to mine. I told that dad his kid did nothing to mine, but this is just how Kaden is. The dad took his son aside and explained that Kaden was different than most children. After the talk the boy tried more to make sure Kaden was enjoying the park experience. This boy taught me something that day: Kaden's possible purpose. If through Kaden others can learn understanding and compassion, it might just be the purpose for Kaden's existence. At that moment I found some peace in the news that my son is different.

Our journey has just begun and we will embrace each new experience with courage and determination.

I Am......

I Am...... bold
I Am...... brave
I Am...... fearless
I Am...... courageous
I Am...... inventive
I Am...... daring
I Am...... limitless
I Am...... wise
I Am...... tenacious
I Am...... spirited
I Am...... undismayed
I Am...... undaunted
I Am...... beautiful
I Am...... desirable
I Am...... pleasant
I Am...... admirable
I Am...... a cape wearing special needs mom.

In the Silence

I am a six year old little boy who appears like all little boys. I can be mischievous and stubborn like the other boys. My mommy tells people that I am different. She explains to others that my thought process is not the same. Apparently my brain works faster than the normal child’s. What makes me remarkably different is that I cannot talk. I have no means to express my needs and desires. This makes me a very frustrated little boy. The day before Mother’s Day I went to dinner with my family. I love being with my family and my cousins understand and love me for who I am. Mommy took us to Wal-mart afterwards. She let me and my sister walk and let us be little free spirits (that’s what she calls it). This little girl comes up to me and got right into my face. She scared me. I wanted to tell her to please move that I was frightened but I have no words. So I did a naughty thing. I hit her. She ran to tell her mommy. I didn’t realize that my naughty thing was that bad. On my way to the car that mommy approached my parents. She said some mean things about me. She said that I was retarded and needed to be caged. Why would a grown woman say such mean things about me? Does she not realize that I am autistic?

Kaden's Struggle

The face of an angel can be very deceptive, or so I have learned. I gave birth to my son, Kaden, over six years ago. He was born a beautiful little boy, perfect and healthy. I did not realize the challenges placed on him. I had the same hopes and dreams as other parents. I did not realize that I was given a child the world sees as special needs. I have a child which is a mini extension of who I am. Through him I am reminded daily of all the things people take for granted. His fight for normalcy may take him a lifetime to accomplish, but I as a mother am raising a fighter.

Early in Kaden’s life I realized that he wasn’t like many babies. He didn’t like to be held. He never reached a milestone when it was to be reached. He did everything at his own pace. When he was fifteen months I discovered he wasn’t meeting the milestones. He was falling way behind. This is where his journey began.

Our family physician was just as concerned as I was. She began scheduling him with specialist after specialist just to learn what was wrong with him. Each specialist had a variety of tests and procedures they wanted to do with him. Before he turned three he had MRIs and nerve inductions done. My heart bled for the pain that we put him through just to get an answer.

My world was shattered the day Kaden’s first neurologist told me that we needed to prepare ourselves for a diagnosis in either a dystrophy or a myopathy. After brief research I realized this diagnosis would never allow him to be an adult. He would die first. The questions kept coming into my mind. How can I allow my son to die? How do I prepare my son to die? Why me when there are so many others who do not care for their children? Nothing is more humbling than to realize that your son could die. I grieved hard for the next six months, when I was given some hope.

The second neurologist, Dr Hammond, says, “It is very improbable that Kaden has a dystrophy. I think he is autistic.” A massive part of me was relieved. My son was going to live, but he would live only in his mind. There would be no escape for him. Physical disabilities are easier to rise above, but there was the possibility that mental ones are never.

So with the new knowledge I was ready to get this diagnosis. I now have a direction to fight whatever is wrong with Kaden, but life had other plans. After meeting with a new team of doctors and having many more tests done, I was informed that he is not autistic. The reason I was given was, “Kaden is too curious about the world around him to be autistic.” This was a new setback, because it closed doors for him and we were nowhere near the diagnosis we needed.

Kaden and I took a much need break on our quest for a diagnosis. After a two year wait we finally saw the developmental pediatric specialist. By this point Kaden had seen his second regression and was out of control for the appointment. Doctor Childers met with him on a couple of occasions before reaching a diagnosis. Kaden was diagnosed with a high functioning form of autism (which he will outgrow), a persuasive developmental disorder (which is why he don’t talk and will also out grow), and his primary diagnosis was a global developmental delay (which changed when he turned 6 years old to moderately to severely retarded). I was personally crushed. I was prepared for the first two diagnoses, but not the third. I always prided myself on being an intelligent person and this was not possible with one of my children.

After receiving the diagnosis we had a better idea of how to beat this and to finally realize Kaden’s limitations. Kaden may never be like other children. He may always be stared at when we go in public and he doesn’t behave as society dictates. It was harder on me to let go of the thought that this was happening to me. I am merely a small part to the equation. This is about him. I was made to be strong to support him.

We received the diagnosis nearly a year ago. He has changed so much since then. He is mellower now. He still doesn’t speak but he will echo what you tell him. My heart melts on the rare occasion that he wants to be affectionate. He is receiving occupational therapy and speech therapy at school and though a private source. His classroom setting allows for a lot of one on one attention. In this school setting he has male and female influence and I think that makes a tremendous difference. I see so much progress with him and I am learning to be cautiously optimistic. We meet with Doctor Childers in a few months. I have my fingers crossed that he too will see the progress.

“The journey of a thousand miles begins with one step.” ~Lao Tzu