Sharing my Story: Jaymonds Journey
Living in a world where my son faces daily dilemmas or requires my assistance in every aspect was never foreseen. For many of us parents living on the spectrum, this is more than a disability. It is a lifestyle to the way we breathe, think, and function. Many of us would not be who we are without living and loving on someone with ASD? Many of us would not change a thing because it's how we got where we are today.
This is my story....
I'll never forget the day Jaymond was born. Before I could wrap my mind
around the idea that I was delivering a child I was already becoming a concerned and worried parent.
The room was placed with panic as I was urged to stop pushing. I remember feeling like the world stopped and I could see the fear in everyone's eyes. "The chord is wrapped around his neck!" What does this mean? Is he going to make it?
Just then the doctor assured me everything was ok and the chord was no longer an obstacle. Just when I thought I could hold him forever he was sent off for lab tests, blood work, and even a sleep nursery so that I could sleep off the meds.
Sure enough on the day we were set to leave his results came back showing he was missing a chromosome. Basically his body is weak to fight fevers well and he would later suffer with fibral seizers. We found this out on a thanksgiving night in the emergency room when he was just one years old. That was not our first challenge.
Years passed and we figured out he was a late bloomer. Not talking, not walking, and not much of a imaginary thinker. I put him in daycare to influence his social skills and advance his development but this is where the word "autism" rocked my entire world.
A teacher suggested he be tested for Autism after noticing how disconnected he was. I literally remember looking over and he was facing a wall, content as could be playing with his shoes, a distance away from a very alert group of kids zoned in on a movie.
with me. He didn't look me in my eyes and hold me tight. He didn't play with toys like others and he went to parks only to play with the mulch and rocks. It was all racing through my mind faster than my heart could keep up.
He was sorting as early as I can remember. He would take my laundry baskets and sort out all the socks for hours!
As I got in my car, I buckled him in with a heavy heart...I pulled up my phone and researched "Autism". As I read through the symptoms I felt like it was describing Jaymond. I had a uncertain fear because I had never heard this word before. Mind you, it was 2010 so this was very early for an abundance of answers the way it has grown into today. I then called my husband and made him aware there was a possibility our lives would change long term.
Very soon after I started my research, medical evaluations, questionnaires, logging behavior, keeping files of dates, milestones, meetings, doctor appointments, referrals, visits, therapies, diets, allergies, supplement remedies, sign language, YOU NAME IT I DID IT!
Two years later at the age of 5 we got confirmation. Jaymond was diagnosed with the following labels.
*IDD Intellectual Delayed Development
*ADHD Attention Deficit Hyper Disorder
*ASD Autism Spectrum Disorder
Then the guilt set in, what did I do wrong? What can I do to fix this?
Years later after going back to school for communication and behavioral disorders I would later find out that many factors could have played a role.
Lack of oxygen to the brain when he was born, possible immunizations he had in early development, genetics, toxins in the blood, and just the hand we were dealt.
Which now leads to the many challenges of acceptance.
We had to accept our son for what he was to become. We would also have to accept that society may see him different and that we would spend the rest of our lives trying to understand it.
Autism consists of impaired communication skills so it wouldn't be long before we faced those awkward stares and questions.
People wanted to know what was wrong with our son? We skipped outings and public events for the next 3 years. We only went to immediate family gatherings and even at that we noticed how he was singled out. We followed his every move in fear he would get into something....his ADHD had him running circles around us.
I spent so much time apologizing that soon it just became easier to stay home and would later become a huge reason why I advocate for social acceptance.
Years passed, therapy began, I pushed forward to have him excel anyway I could but the social challenges of making a friend still linger. Kids just don't understand why he may blurt out the first thing that comes to mind or why he needs help in most cases where kids his age group have mastered them.
In the world of autism we can look at a full complete sentence or an independent task as a big deal! We cry over milestones that world may know as mild. We pray for a "normal" day, we hide from big groups of people, we prepare for holidays with fireworks, and have learned to appreciate the small things.
We would soon cling to all those little things. Jaymond would be the reason why we argued, cried, broke down, revived, hustled harder, and stay motivated.
Today he is 11 years old and facing middle school next year. I would be lying if I said I wasn't reluctant to watch him grow. I have become accustomed to wearing thick skin and wearing my heart on my sleeve at the same time. The autism community has become a support system with an unspoken bond. Everyone shares a sense of a similar experience, past trials and tribulations, and one focus on our child's achievements one day at a time. It keeps me strong and resilient. Ready to fight fo
Sharing my story is a way for further connection and hope that my son can live a life knowing that I use everyday to advance us to the next one. I must make myself loud and clear that I would not trade our journey for any other story. This was our meant to be...our purpose, and most importantly our sole responsibility to see our son through. April is not only Autism Awareness for us because we live that life daily. However April gives us the platform to shed support and be venerable to the idea that Autism is rapidly growing with no cure in sight. It's not only about the awareness but about the acceptance that happens around your child. With more knowledge comes more opportunities for education, improvements, recourses, and involvement. What a world of a difference that could make.
By reading this blog today you have done your part. Welcome to April!