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

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

REACH OUT & HEAL

The various challenges that parents face on a daily bases, takes a lot of growth and maturity. I personally feel growth and maturity goes to an entirely different level for parents like me and, especially single moms or the married mom who still has to embark the journey feeling alone to raise a child/children with special needs. It can be overwhelming hence why it’s important to put your pride aside and ask for help.

Heal your wounds and evolve into your greater version of self! Watch your life shift.

I became a mom at 16. Yes, I was a teen-mom and by the time I had my second child, I was 19. I remember feeling so overwhelmed, I couldn’t get my youngest child to eat her food. I burst into tears and slid to the floor of my apartment and felt like I was failing her and her older sister. So many negative thoughts came flooding in at that moment. After sitting there crying for a while debating taking my life, I found the strength to pick up the phone and call my girlfriend that lived across the street. She and her mom came over to see about us. Her mom fed my daughter with no problem and all I could say was, “she just wouldn’t eat it for me, I kept trying.” My friend’s mom asked did you try mixing the two together? Like really though….today I can laugh about that memory as well as see how much I needed some deep healing in my life.

I think I looked a these photos just about daily in aww that my son was really growing inside of me.

At 37, I was blessed with the male child I had always desired. I didn’t know all the additional challenges we would have to face. There was a time I had all my defenses up and wasn’t receptive to anything other than knowing my son had a Cleft Palate (which was tough enough) and he would speak once repaired. So, I thought and that’s basically what I kept being told until it was truly determined his inability to speak stems from something more. The journey to being an autism mom began and soon after our journey of him being diagnosed with the rare genetic disorder SATB2/Glass Syndrome followed. As I begin my acceptance journey for all the said challenges, I knew something within had to take place. My PTSD, depression, anxiety and panic attacks could no longer dictate my life! My son needs me to be the best version of me and fight for him. My daughters and grand children need the best version of me. I DESERVE THE GREATEST VERSION OF ME, AS DOES THE WORLD!

Now in my 40’s….I am more open to healing my wounds and inner-standing the lessons that were meant for me to learn in order to discovery who I am and the powers I possess. By healing, I am rising and gaining an overflow that I may pour into others that are ready to become the masters of their realities.

Healing Tip: Be ok with acknowledging you are not ok and need guidance to help you through it. Healing requires you to dig deeper in order to find the root cause of your dis-ease and dis-harmony from various angles

To all mother’s there are support groups in your community and online support groups. You don’t have to do this alone! Don’t hurt yourself or your child. Majority of the support systems I’ve found online create a safe space so you can get the support and resources you need.

Don’t silence yourself, reach out!!! #IamMyMiracle

We Birth Things With Our Words and Thoughts…Be Mindful

Have you ever spoke some thing aloud or even meditated on them in your mind so much and it actually came true? Seriously, take a minute to reflect back on something you may have said or thought and eventually it actually happened! Some like to say it was coincidence, luck or what have you….

Well, I want to tell you a little bit about my pregnancy story. In 2009, I was diagnosed with PTSD from the Iraq War and on a lot of medication. I would cry often when I wasn’t in a zombie like state and whisper, “I don’t want to depend on this medicine for the rest of my life!  I lost mobility in my legs and had to learn to walk with a cane and braces on my knees. I had just become comfortable in the Zumba classes that I was attending 3-4 times a week.  I had grew to love class, because when I walked in the doors for one hour the vibes put me in another place mentally. Well, as I went to physical therapy and gained some strength in my legs; I’d go to class with my cane and attempt to modify the moves. I even had braces on my knees. Can you imagine doing Zumba like that? I felt weird until I had the story of a lady getting her Zumba license and she was in a wheelchair! My highest weight had been 213 and it seemed like I would get stuck between 189-198. I would always say,”lord let me just lose weight so if I can still have kids, when the time comes, I won’t have so much to lose after the delivery.” I spoke this a lot y’all.

Fast-forward to 2012, I moved to New York weighting 193. In August 2013 a friend of mine from back home was doing a business with some homemade natural bath products that help you lose weight. It was a scrub, a shower gel and firming lotion then a supplement you would take 3 times a day. Well, the supplement would change as you stayed with the program and I was food journeling and everything! By March Madness 2014 I was 163 pounds!!!

I was so proud of myself and only to find out a few weeks later that I was 8 weeks pregnant.  Talk about the shock and numbness as well as slight disappointment.

I know, I know why be shocked when you know you been getting it in right….  Anyway, that’s a whole other conversation.  Back to my point.  I wanted to experience pregnancy being a married woman. Although engaged at the time, we still weren’t married.  I was numb because I had stayed focus on releasing the weight and forgot all about what I had asked The Most High for all these years; 1) a male child, 2) to release some weight so when the time comes for my son, I wouldn’t have so much to release after birth, 3) not to be on the medicine for the rest of my life.  Indeed my doctors took me off all medication.   The disappoint stemmed from me feeling like I had let myself down by the promises I’d made to myself for my daughters.  I wanted to show them something different, a two parent family life.  To magnify the disappointment after finding out I was pregnant, my oldest daughter called a few days later to tell me she was 6 weeks pregnant!  What the world was going on.  I never wanted to be walking around pregnant when one of my daughters were pregnant too.  Oh my goodness lol!  I can laugh now but then it was no laughing matter.  I struggled with trying to be supportive of her as her mother and living 8 hours away plus the complexity of my own situation and struggles with depression.  Even in this particular situation, I had forgotten something that I asked the Most High….I prayed for my daughters not to be teen moms like I had been.  She was legally grown and going to bless me with my first grandson six weeks after I birthed her little brother.  Both of my daughters were adults when they began to create a family life of their own.

There is power in our words and our thoughts and they do come to pass.  It doesn’t mean it will always happen in our timing but it will manifest.  Chose you words wisely and be mindful of your thoughts.  Detox your mind, body space and soul.

Vacationing with Jaylen

Going on vacation was very hard for us, one moment we are ready to go, and the next we are changing our minds. We changed our minds because we weren't ready to deal with the staring that came with my son Jaylen and his dad whose and amputee.

Often I talk with other families who have the same fears about going in public with their loved ones who are different. The commonality is, we would rather stay home and avoid the drama of being looked at funny by those who are ignorant.

Now that I've jumped off the ledge and decided that I would no longer live in fear, my family and I enjoy family vacations. I know use my experience to show other families that it's ok to take your loved ones out in public without fear.

It was about three years ago when we started going places. I’ll never forget our first vacation. We went to the Great Wolf Lodge in North Carolina. This place isn’t very accessible but there is plenty to do. We decided to go here because our kids love water especially my son and it’s an indoor waterpark. I hate being outside! (lolol)

Unfortunately, we still got the stares, however,  when we were in the waterpark the attention wasn’t on us which allowed us to enjoy ourselves. The experience was amazing, and we have gone there every year since our first visit.

Our second vacation was at the beach. The experience was not as good. We quickly found out how the beaches aren't the best for wheelchairs unless you have a chair with wheels that can tread sand. To get Jaylen and his chair to the beach near the water, we had to carry him and that heavy ass wheelchair to the beach. By the time we got there, we were bombed. You know how the sand can take a toll on you when you’re walking through it. Well, imagine walking through it carrying a sixty-pound boy in his wheelchair.

hen we got by the water people were staring at us hell we just carried a wheelchair with our son in it so yeah getting looks was inevitable (lolol). We just focused on enjoying ourselves and not on the people wasting their beach time looking at us.

Now, in current times (lolol) some beaches now have beach wheelchairs that you can rent when you go to the beach and there are a lot more accessible beaches.  So, You can also purchase wheels that will handle sand so that you don't have to change chairs.

My overall advice would be, when looking for places to visits don’t think about what others may think, don’t think about how people may look and you may even run into some problems HOWEVER don't let that dictate the fun and memories you will create with your loved one with special needs.

A Family Affair

Being a parent to any child is hard but being a parent to a child with special needs is sometimes harder. Especially when you have more than one child and the other children don’t require as much attention as the child with special needs.

The only time I have trouble trying to balance out time is when my son is admitted into the hospital. That's when I feel my worst. It makes me feel as though I’m a bad parent because they all need me. Even though I feel my worst, my girls understand that their brother requires a little more attention because of his (dis)Abilities.

When Jaylen is feeling his best we are always busy doing things that our entire family can enjoy together. Our girls love including their brother in any and everything even when we're just doing things at home. We do make time for the other children to do typical activities without modifications so that they can feel their lives don't always have to be altered because of their brother, Jaylen.

We love to go to amusement parks for the rollercoasters. Jaylen love rides and doesn’t seem to be afraid of anything. Our girls also enjoy rides to so it’s always a win-win situation.

Our family, in a nutshell, enjoys being around each other and doing things that everyone can do.

My G-Tube Kid

I was nineteen when I had my first child Jaylen. He was born with some medical complications. The hospital where I had him transported him to another hospital that specialized in neonatal care the next morning.

Jaylen was in the NICU for 1 month while they ran several feeding tests. 2 of the test performed gave an indication that a G-tube along with the fundoplication was necessary. These test also indicated that Jaylen was experiencing REFLUX aka GERD and Aspiration into the airway.

(A Nissen fundoplication is basically a procedure where they wrap the stomach around the esophagus to stop you from aspirating)

Prior to the surgery, an NG tube was placed as a temporary solution so that nutrition wouldn't be lost. Once the GTube was in, I was taught how to care for it. I will not lie, I was scared to death of hurting my son.  I had to stay overnight at the hospital to be monitored while feeding him. They had to make sure I knew what I was doing before discharging him.

After getting Jaylen home I had to show my family how to feed him. For the most part, I was the only one to feed him because just like me they were afraid of hurting him.

Fast forward,  Jaylen is on his way to being thirteen years old and he is still tube fed. Each year Jaylen has to repeat a swallow study to see if there are any changes to his swallow ability.

Right now, he still can’t get thin liquids by mouth, but he can eat some foods by mouth. I am very proud of his progress! Most people think because they are g-tube they won’t be as healthy as other kids. Well, Jaylen is now eighty-two pounds and has always been chunky. The best thing they could’ve done for him was to give him that tube. And I am a happy g-tube MOM!

Dream, Hope, Fight, Believe!!

Great day beautiful soul!! Are you a dreamer? Do you dream big or do you dream small?

You see I’ve always been a big dreamer.  I remember all throughout my childhood I would have dreams and visions of things before they even happened or while they happened in real life. But one of the things I remember about going to school is I always imagine my schools being my mansion with many beautiful rooms, a huge pool, even a big beautiful room underground with a huge open window that had an ocean view and I could watch the dolphins swim 😍🤗

Some things and decisions I made in life tried to suffocate and steal my ability to dream but I am declaring all my victories today! No longer will I downplay my dreams or goals nor the small successes on my journey! What may look small to others is merely their opinion and everyone has those. Guess what beautiful none of them matter because at the end of the day your journey and my journey can look the same or similar yet the process and the cost are totally different!

As a parent with a child that’s differently(able), I am learning that what I envisioned my life would be like raising him just wasn’t in the plans of The Most High. I am thankful that I was chosen to be King’s mom because for over 20 years I had dreams and visions of having a son. This journey has come with many challenges from the moment I found out that life was inside my womb. Yet none of them took us out, we are still here determined to rise above it all and soar as we keep evolving into our greater selves, creating our best life of abundance, peace, love, and joy!

I always had God size dreams and I am believing for supernatural miracles! I’ve seen them happen, I’ve experienced them and King and I are one of them; as you and your child/children are too. Therefore; I know what’s for us is for us and we have to stay the course, trust the process and faith it out with WERK!

Dream, Hope, Fight, Believe and so it shall be manifested!

ShonNicole