SCHOOL FEARS FOR MY DISABLED SON

Every parent is probably nervous when their kids go to another school and / or change teachers. The reason behind my nerves with Jaylen is this,  I'm not sending him to school with just a backpack full of school supplies, I'm sending him with a basket of meds and supplies.

I'm leaving him in the hands of someone who probably doesn’t know the different types of seizures he has. Someone who doesn’t know the difference in the way he whines for different things he wants. Someone who would probably get upset because he fights when he gets tube-fed. Someone who doesn’t want to feed him by mouth because of the way he chews or swallows his food even though his favorite thing to do is eat.

It's a lot that goes through my head especially with his behavior being the way it is lately. Who's to say someone won’t get upset and put their hands on him? However, we all know where I’ll be if that happens (lmao)

I said all of this to say, if you happen to see a parent crying today while leaving their kid to school don’t just think they are overreacting it could possibly be they have a child with special needs who are overprotected and hate to leave their special angel in the hands of others even if they are qualified for the job.

#ventover#mynervesarethroughtheroof#andidontcarehowlongJaylenbeeninschool#IHATECHANGE

Is this my Life?

There are times when I really have to sit back and wonder and ask, “Is this my life Lord”? What did I do to get dealt these cards? Yes, I now have a loving husband and two beautiful kids. But a part of me is still missing. My first-born son is no longer here with me. He was my first love. The one who taught me how to be patient and how to be strong. Who taught me the true definition of unconditional love! I want to hug him, and lay with him. I would love to sit there and braid his hair and him give me the side eye. I would love to stare into his beautiful brown eyes, round face with his mustache and strong adams apple. I miss hearing his deep voice when he cried out. The only time I was able to hear his voice, so I didn’t mind that cry. I wonder what would he be doing at this moment. There are times we would be at my middle son’s band concert and I would look over in the aisle as if that’s where Tae wheel chair would be place. I imagined him smiling while enjoying the music. I imagine my daughter pushing him around in his wheel chair, wanting to give him his medicine and just help with whatever he needed. I know that she would have been a wonderful little/ big sister just like her older brother was. I wonder how would our lives be different, knowing the things that I know. Having the support that I now have. Would he have passed away when he did if he had been home with me?

All of these things and more runs through my mind daily! But lately, my God has shown me why I was dealt the cards that I had. My steps had already been ordained prior to being in my mother’s womb. Everything that I have endured was to get me to where I am and who I am today. The strength and determination that my son demonstrated was for me to see that I too have that same strength and will power. I am here standing tall because God gave me a gift when he blessed me with my son. And that gift would lead me to my purpose.
See we all have a purpose in life. And everything that we go through whether it’s right or wrong will lead us to our purpose, our destiny. But it is up to us to be spiritually ready to accept it. There will be all sorts of signs, but will you recognize them. I will share with you all that God has been showing me these last few weeks, but I believe he has been speaking, I am just now listening…..

The numbers 27 and 7 has been coming across my path. I pumped gas twice and both times it was $27.27 then $27.07. Then I paid for parking twice two different days it was $7. This continued to happen more and more. My mentor said girl if you don’t look into those numbers!

27: Angel number 27, You are more sensitive to the angel number 27 because there is a new spiritual awareness being awakened in you. This indicates that you are evolving on a whole new spiritual level, and you are ready to accept this divine message from a higher source.
Deep huh?
7: Angel number 7is a wonderful and important message to receive because it means support and encouragement.is on the way. It’s an assurance that whatever you’re planning to do, or thinking of deciding on, will be the best thing for you.

I have made some big decisions regarding business and life. Just know what is for you is for you and can’t anybody take it away from you!!! He is waiting on you. Listen, be patient, obedient and consistent.

I will be a motivational speaker. I will inspire and help others. I am his voice.

I Am Tired!

Parenthood, in general, can be tiresome, being a parent to a child with (dis)Abilities is extremely tiresome. Our world literally can be rocked in a matter of moments.

My experience with this lifestyle has been very interesting. I have no family besides my children's father and my parents. I have no true support outside of the nursing hours I receive from the Medicaid system.

It saddens me that most including myself do not have a family we can lean on. A family that will support you and uplifts you. A family that will give you a break so you can enjoy life a little. None of my family has come to my aid. None have come to sit in the hospital with me, to relieve me so I can breathe or even just nap.

When I say I am tired I really mean that shit. I am tired of making calls, questioning things, handling things, being told what things will and won't happen. Why Anthony isn't good enough or not in need of certain interventions. It's just overwhelming at times. Not having access to quality care and services makes me tired.

Per society standards, I am a black female with black sons who are viewed as threats to this country I currently reside in. I have to explain to my youngest how his skin color, gender, and diagnosis are all strikes and how to stay safe while teaching him how to care for his big brother.

I've been told before (in my house) by a family member that she was the mother of all mothers. I've been told that my journey has only been for a short amount of time so I don't understand motherhood fully yet. I was also made to feel that I was the one that causes the breakdown.

I AM FUCKING TIRED of working hard to give my son the best life possible even with roadblocks. My family has dishonored me and my children in many ways. I am the black sheep and it's ok. I understand that everyone isn't for me nor needs to be associated with me and my children.

It has taken me a very long time to understand that none of this is my fault. None of what others think and feel of me is important. I have a choice!

Being tired means allowing others into your space and allowing their negative vibe to drain you! We tend to accept these behaviors because of our lack of confidence to say how we really feel and set boundaries with our family. We believe that because they are family we have to accept whatever is given.

You do not have to accept less than your worth and it's ok to tell your family to kick rocks if they treat you less than your worth.  It's too often that we subject ourselves to things for the sake of family.

Family is only the blueprint into how the world will treat you!

I am TRIED and that's ok! I have learned to be ok with other's not desiring to take this ride with me. After all, it's a pretty bumpy ride filled with lots of uncertainty and emotional challenges.

 

 

 

Let it fall apart to rebuild in its likeness!

 

A few days ago I sat in my room and cried, I couldn't help but come to a final realization that everything I expect from people will never be. Having others fully understand you and your thoughts will never be an option, especially from those who you expect it from.

Growth is a VERY HARD job once you accept the challenge! I've been struggling with finding out why the cards that were dealt with me were so. Why didn't the cycle stop before me OR was it suppose to be me to stop the cycle?

As usual, I asked my mother a question that would trigger an uncomfortable place within her that would cause her to lash out at me with anger. At that moment I felt that she was struggling with accepting the choices that she made with her life. It was that moment when she dodged the question and met me with a wave of anger and an answer that I did take personal for a moment.

As the heated and intense discussion between us continued, I could see her struggling with herself and using the outlet of me asking the question that triggered this much-needed breakdown. It was needed for both myself and my mother.

Prior to the conversation taking place, I was sitting in my room on my bed. As I was sitting there working, my left arm got cold and the hair on my arm began to raise up. I then felt a gentle touch met by a slight gentle breeze that let me know the feelings of my grandmother (my mother's mom) being present was true. That's when I went to the kitchen where my mother was and that's where this entire breakdown YET much needed moment that brought so much clarity.

A conversation that was met and given hostile unkind reactions, turned into a moment of so much clarity on both ends. I felt my mother FINALLY heard me and I FINALLY understood my mother and her actions to many things that took place in the past. It clicked, how I needed my mother to show up in ways no one showed up for her. She didn't know how to stand for me against our family. LET ME BE CLEAR, my mother would stand against anyone and any entity as long as it wasn't family she had to do it against.

This conversation helped me understand that what I was asking my mother to do was impossible because no one did it for her, no one was there for her the way she needed. She didn't understand what being there looked like. So naturally, I traveled the same insanely painful path she did. Mimicking behaviors, similarities in experiences both good and bad.

The breakthrough came once we both understood the experiences. A clearer understanding was formed and barriers that were once there were taken down. She gained a better understanding of who I was and am as well as on the way to being. Her struggles which bred an unstable and unbalanced human created the individual that fights for her children today. When I look back at the struggles, I fully understand that those struggles that I held against her were what I needed to stand tall for my children.

As I change how I view my struggles I now embrace and thank GOD for them. How would I be able to stand as tall as I do (and I am still growing) for my children if I hadn't gone through those struggles? There would be no way! Every battle that came my way built me to stand for my boys. Yes it was packaged differently and yes it wasn't idealistic, HOWEVER, GOD knew who was needed to breed one hell of a warrior to care for his prized possessions.

Now that I've gone through the storm with my mother, I feel I elevated that much more. I have a better understanding of things and she even called me to the carpet on a few things. From this complete breakdown, I feel we gain so much we didn't have for so long in a matter of hours.

This is the power of the Universe if you are open to the possibilities of what it can bring. If you aren't resisting you can find the peace and the joy you seek.

Timeless Ending

On July 20, 2013, it was an extraordinary day because I published my debut book, Omerta Affair. A romance set in the violent underworld of the Las Vegas Mafia. Remembering that day, I was jumping with overjoy, tears of joy. It was a super fabulous, wonderful feeling, "I really did, I'm a published indie author." Fast forward six years later, it's time for me celebrating my book once more as it releases under a new title. Omerta: Timeless Endings from Lavender Press An imprint of Blue Fortune Enterprises, LLC on August 27, 2019

It's all began on my 22 birthday. I went to the newly open Mob Museum in Las Vegas Nevada. To my shock, Frank Cuttolla was there signing his book. I met him and told him that I want to be a Mafia-Romance, and he said to me that if I need help, just let him know. I said okay thinking he has better things to do than helping me a young CP girl at the time. I found him on Facebook weeks later, and we began to talk, he always inviting me to this and that. I base my first book "Omerta Affair" off on Tony Spilotro's reign as The Las Vegas Mafia boss, in the 1970s. He had it all, running the Crime underworld. He could have any woman he wanted in Las Vegas. Instead, he became romantically Geri Rosenthal. At first, it was a Casino's FanFic to the 1995 move, that I was witting and putting online for free. My family and friend told me it was way too good to be a FanFic. After I finished my book, Frank hooked me up with some people and that how my book came to be. Now he's Uncle Frank to me.

Since then, I have continued to gravitate toward writing dark, mature romances, some suitable only for adults. It is frustrating to me that some authors don't take me seriously because of that I have Cerebral Palsy. I write dark romance, and my Cerebral Palsy had nothing with it. Even if I didn't have Cerebral Palsy, I would still write Dark Romance books.  On November 17, 2018, after years of writer's block and personal problems, I finally came out with the Deepest Element, which is a short story under my formal pen name Alexandra Forry. Now I'm rewriting Deepest Elements to be a full-flash novel tiled Blue Bell my goal for it to come out late 2020.

Blue Bell set at a very elite boarding school that has darkened within its wall. Arriving in Radcliffe Heights, Rhode Island, freshman Peony "Poppy" Warwick admired the picturesque small town. But deep in the shadows of the woods near Blue Bell Boarding School, and along its hallowed halls, lurked illicit sex, murder, and harrowing danger. Seduced by Damon Dashwood, the handsome, blue-eyed, white blonde 41-year-old Headmaster, Poppy enters a world of love, ecstasy, heartbreak, betrayal, and death.

How Did I get my idea for Blue Bell? In 2005 I was living in Pahrump, Nevada, that's world-famous for its whorehouse of ill representatives. When breaking news hit our town's newspaper, and then it went on to become a remarkable news story on cbsnews.com.

The story went like this. This guy went and told detectives he found the videotape of a young of 4 or 5 years of age girl who had sexually assaulted in this homemade videotape. Investigators don't think this guy made the tape.

Being homeschooled with nothing to do, I followed this story until I read this five years later; "We found the victim. She's safe," Nye County sheriff's Detective told The Associated Press. I was fifteen at the time. I had made up this story idea.

About a girl in a boarding school that is determined to expose her school's evil headmaster. After she had discovered a prostitution ring, sex trafficking, and murder within the school's walls and on its grounds, even though human trafficking is a foul, very dark subject, the morale of this book is "fight for what you believe in, for what's right" and "never give up." I never wrote it down until December of 2017.

"It is an interesting story that is generally well told. The basic premise is sound, and it has the potential to be a well-received psychological thriller. The two main (Poppy and Dashwood) are well constructed and carry the story well. The plot and storyline are clear. The reader can see from the mission that Poppy is on; Exposing the criminality of her headmaster Dashwood and the school in the sex scandal that had been going on for years." A review of DEEPEST ELEMENTS.

I never did plan of having my two main characters, Poppy and Dashwood, falling in love with each other. I like to point out that, It a time of great confusion for girls as they start to get sexual desires. There is an element of excitement and danger with an older man with power. Poppy knew that Dashwood is a criminal, and their relationship is illegal. LOVE is stronger than HATE, that why I shall make it she want him in jail party because oddly she would have him all to herself. It's love everlasting.

Reality Moments

Tonight after talking to my sister she made me think about things I never even thought about. She said to me Rissa do you realize that the day for you to send Jaylen off to college may never come? Do you realize there are things that most of us look forward to doing with our children that you won’t get a chance to do with him?

And I realize it’s just something I never even thought about. I often think about how I’m going to one day have to let my girls go into the world but never my son. I guess it’s because I know we will always have him. My husband and I often plan what we want in the future once the kids are out of school. In those plans, we always include Jaylen and how we’re going to travel the world with him. Not thinking about how we won’t get to experience the things with him that we will experience with our girls.

And for some reason even after her mentioning it didn’t bother me because I know that I will have to care for Jaylen for the rest of our lives. To be honest I’m pretty excited that one day we will travel the world with him. Maybe I won’t send him off to college, maybe I won’t dance with him at his wedding, maybe I won’t do the things that Mother’s with sons do but it won’t stop us from living. It won’t stop us from looking forward to our future nor will we dread on the things we won’t be able to do with him. Because he will live the life that is meant for him even if it means us having to do everything for him.

I think because I accepted it doesn’t bother me. Because I know to have a child with special needs sometimes requires us as parents to be there with them forever and I’m cool with that.

GROWING INTO A BETTER VERSION OF ME! STARTING NOW….

Lately, I've been struggling with the realization of being unhappy with how I allowed myself to become overweight. There are things I need and want to do with myself but I never seem to make time for me. Everything and everyone else ALWAYS come first.

The way I've been handling this realization is through food. I Just eat my life away. Not to mention, as I eat I’m thinking the entire time to myself, "why are you eating this? Why aren’t you following your doctors' orders knowing you have diabetes".

I know exactly what not taking care of yourself can cause yet I continue to eat and I continue to drown myself in food because it seems like the only thing that makes me happy. HOWEVER, the reality is, I AM NOT HAPPY AT ALL.

I look at myself and I don’t recognize myself. This isn't me, this is a person that would rather put others happy before her own happiness. This is a person that could once look in the mirror and smile. I understand that I can’t take care of my family if I’m not taking care of me.

I feel so bad saying this and knowing this? Why do I feel like I’m the least important person in my life? I ask myself these questions every day. I’ll tell myself that I’m going on a diet then, pick up a Pepsi. I’ll say I’m going to stop eating fried foods and here I am at KFC.

I think losing weight is the hardest journey ever. A few days ago I asked one of my homeboys what’s the first step to losing weight and he said determination and what he said was/is true. I know once I start I have to stay consistent, honest and open to the journey in order for it to be successful. I know you can’t go cold turkey, I also know I have to start somewhere. So, I decided I would start by drinking more water which I hate (insert sarcasm lolol) as well as cutting back on snacks and fried foods.

Since then I have started over several times but I didn’t quit. Picking up something unhealthy is way easier and so much cheaper to do. But if I want this for me and for my family I have to push through it.

To hold myself accountable, I will walk you through my journey and I promise to be my most authentic self so I can help someone else.

#DaMotivatedMom

Those of us who have a disability or care for someone who is disabled and travel around our communities know how difficult it can be.  We must look for smooth pavement or aprons if we use a walker or wheelchair, we must search out handrails, ramps and avoid large curbs and steps.  Sometimes there are no sidewalks at all and heaven forbid no elevators, only stairs or escalators. Want to set me off real quick, let me pull up to a doctor’s office or any other establishment and they have no apron in the parking lot, I’m going to hear my girls groan, because I’m looking for the manager to tell him/her how dumb it is for them to have handicapped van parking with no apron.

When we first began this journey, if it was a place I was not familiar with, I would call to see if they were handicapped accessible.  On some occasions, I would go there beforehand and see for myself, because my definition of handicapped accessible may not be the same as theirs. It is a bad feeling when you get ready and arrive at a destination that is not accessible.  For example, we attended a production at a neighborhood theatre who said they were handicapped accessible, but actually only had room for her in the aisle which had a steep incline, she said she felt as though she was on a rollercoaster and held her arms up as if she was at Six Flags throughout the whole play. Once we attended a leadership meeting held by a sorority where we had to clear the bushes to reach the ramp. Once inside, to enter the building, they had one step. I asked the group leader, you told me you were wheelchair accessible, she says we are, we have a ramp, duh?

One way I prepared my girls is by applying for them a paratransit card when they were 14 years old. Paratransit is special transportation services for people with disabilities provided as a supplement to fixed-route bus and rail systems by public transit agencies (GCRTA.com). Dominique began working a summer job, and because I don’t have a wheelchair accessible vehicle, I had to figure out a way for her to get there.  I would book a ride and teach them how to wait for the bus, enter, pay and exit. If they were going somewhere new, I would go with them the first time, check out the scene or drive and meet them there and show them what to do and see the drop-off point.  Their first trip was to the church, which was about a mile from our house.  I told them to call me when they got there and told them what to do when they got there. I was so nervous, I drove there and hid in the parking lot and watched them.  When they saw me hiding, Jasmine said: “for real Mom, for real!”

Another trip I planned for them was to the grocery store, about 20 minutes from home. I gave them a note and money for three specific items. Again, I was really nervous!  They called me in no time and said, we finished a little early with money left over and have time before our bus comes, so we stopped next door at Subway and are sitting in here eating a sandwich.

Slowly, steady, but surely, we are changing the world and making it more adaptable to our needs.  When we are visible, when we make suggestions, when we complain, we make a change.  Keep changing the world!

You can also connect with me at advocate4youblog.wordpress.com or email me at advocate4you17@gmail.com