Queen amongst Kings…
I heard a quote that resonated with me, and it said, “A mother is a son’s first true love, a son is a mother’s last true love.” Being a wife and boy mom times three, I have the pleasure of having four true loves. Each one a special piece of the puzzle that makes up my heart.
I take pride in being the Queen of my Castle and it is something I have been used to my whole life. I have four brothers (one older and three younger) and a baby sister (who 16 years younger than me). I’ve been surrounded by mostly all males for majority of my whole life. So, with all three pregnancies I felt like a pro knowing what
was coming having boys, but nothing prepared me for having a child with special needs, specifically, Autism.
Seeing the signs…
When we first started noticing signs, Jaxon was about 10 months old. His eye contact with us started to decrease, he stopped responding to his name and he decreased in babbling. These at first were the only signs, so I didn’t think much of it.
But shortly after his first birthday, I noticed what I now have learned is called stimming; the repetitive flapping of his hands very close to his face. He also appeared to get easily overwhelmed and had difficulty regulating his senses and emotions.
With these signs along with his continued delay in speech, we reached out to his pediatrician when Jaxon
was 18 months old. I immediately started feeling anxious, fearful, and embarrassed. I didn’t know who to call, so I called on the name of the Lord. I prayed for God to show me Jaxon and highlight anything that I needed to see to be able to advocate for him, but to remove all anxiousness, fear, and embarrassment.
God is so amazing and did just what I prayed for. But it was still very difficult to wrap my mind around what was possibly to come.
Trusting our intuition…
During the discussions with the pediatrician, we were met with so much compassion and an immediate response to set up Speech Therapy services to address his delayed speech. Due to the pandemic, Jaxon had speech therapy once a week via telehealth over the months leading up to his second birthday.
With the support of his pediatrician and speech therapist, we initiated the process to apply for an evaluation for Jaxon’s development. After completing an almost eight-page packet, I sent it off and waited for a
response. A month later we received a phone call that Jaxon’s scores made him eligible for the Autism Spectrum Disorder Evaluation.
I was both devastated and relieved. On one hand it was the news I was dreading; Jaxon having a developmental disability, but on the other hand, I was relieved and felt validated in what God allowed me to see all along. My Mommi senses were in tuned with what was going on with my son and that helped me semi-prepare for what was to come.
The missing piece of the puzzle…
As a young girl, I loved puzzles. I was the one that tackled 1,000-piece puzzles in a day for sport. I was fascinated by the many pieces coming together to create the whole beautiful picture. So, I don’t think it strange the connection to my love for puzzles and the symbol for autism which are colorful puzzle pieces are correlated.
From the time Jaxon Carl was born, I told people he was the missing piece our family didn’t know we
needed to be complete. Not knowing that just two years after his birth, I’d be picking up the pieces of my shattered heart from the news I never expected to get.
After numerous discussions, speculations, and evaluations, on August 16, 2021, my baby boy Jaxon was officially diagnosed with Autism Spectrum Disorder with an accompanying language impairment at two years old.
Jaxon received a comprehensive diagnostic assessment, which resulted in delayed ranges for social-emotional skills,
adaptive behaviors/skills, nonverbal and verbal modes to communicate, and cognitive skills, yielding a diagnosis of a Global Development Delay.
We were told Jaxon would require support for deficits in nonverbal and verbal social communication skills (Level 3
– Requiring very substantial support) and support for restricted repetitive behaviors having difficulty redirecting from fixated interests (Level 2 – Requiring substantial support).
He was also diagnosed with a Sensory Processing Disorder, which explained why he often become overwhelmed when we performed simple tasks, like changing his diaper, brushing his hair, or even giving him a hug.
With all this information we set out to gather all the pieces of this puzzle, so we could see the beautiful picture that God had given us.
Hitting the ground running…
We immediately went into action to set up the recommended therapies for Jaxon, which included Applied Behavioral Analysis (ABA) Therapy, Occupational Therapy (OT) and Speech Therapy (ST).
ABA therapy applies our understanding of how behavior works to real situations, with the goal to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning.
OT is a branch of health care that helps people of all ages who have physical, sensory, or cognitive problems.
ST is the assessment and treatment of communication problems and speech disorders. Because of the Global Development Delay diagnosis, Jaxon was approved for a wide range of services, and we were very pleased at how quickly things moved in our favor.
A plan in place
I’ve heard some heart wrenching stories of families not getting the services needed, so I’m very thankful where we are at this time. He’s currently receiving in-home ABA five days a week for four hours a day. OT has only been once a month and ST is once a week; both will increase as we work out the details to his Individualized Education Program (IEP) with the school district that he will attend preschool/grade school.
I had several peers recommend the Alta California Regional Center (ACRC) for additional services. ACRC
is a private, non-profit corporation working under contract with the State of California, Department of Developmental Services, to provide services to infants and toddlers, between birth and 36 months, who have a need for early intervention services and who meet the eligibility criteria for the California Early Start program, as well as services for persons of the age three and above with developmental disability pursuant to the
Jaxon has started with early intervention services in ACRC, and we are now preparing for his transition main hub of the ACRC, who is facilitating the meetings with the school district for services, as he is approaching his third birthday.
Navigating a new chapter…
We are approaching the one-year mark on our autism journey. This story of ours is still being written. I am so thankful for the pages that have been written thus far.
Our family is learning to navigate this chapter we are in, and let me tell you, it’s a complex one. Some days are better than others. Between sleepless nights, sensory seeking activities, unexplained meltdowns, I’m often finding myself running on fumes to get through.
My older two boys have been amazing though. They have been able to grasp the reality of having a brother with specific needs and advocate for him in a way that has blown my mind and blessed my heart.
I remember trying to prepare them for his arrival. Reassuring them that they were loved, not being replaced and very much vital parts of our family.
My brother’s keeper
Seeing the brotherly love is a great joy. Our oldest son told me shortly after the diagnosis, “Mom, Jaxon is my brother and I love him. He doesn’t have a disability; he has a different ability.” I could not contain the tears from falling down my face.
My twelve-year-old and nine-year-old sons have been able to understand and create a space for their brother, that most grown folks can’t comprehend. My husband is an awesome man! He has reassured me that we are indeed co-captains leading Team Payne.
Between both working, to carpooling the boys to sports, to taking the night shift with Jaxon, to sharing the household load…we are a dynamic duo and I’m beyond thankful!
Finding additional resources…
We are faced with the reality of what will Jaxon’s quality of life be like. Will he be able to verbally speak? Will he be able to attend traditional school, make friends, play sports, experience romantic love, live on his own, get a job, or be loved for who he is?
Every child, teenager and adult on the spectrum has their own unique strengths and challenges.
I am learning that organizations like the HollyRod Foundation; founded by actress Holly Robinson Peete and husband, former NFL player, Rodney Peete, Autism Speaks; founded by Bob and Suzanne Wright, grandparents of a child with autism, are dedicated to address the diverse needs through research, advocacy, services, and support.
By increasing understanding and acceptance of people with autism, these organizations are building a kinder, more inclusive world. We all can help in this effort by taking the pledge to help create a world where people with autism can reach their full potential.
April 2nd is World Autism Awareness Day, and you can show your support by wearing blue that day as well as throughout the whole month of April.
I charge you to research your local agencies and organizations on how you can become an advocate in your community for people with not only autism, but any disability.
My story is for every Mommi
As we continue to learn, we can educate. As we educate, we can make the necessary changes this world needs for every person to be a valued member. I will continue to write the story of our autism journey.
I will be transparent, honest, vulnerable, and real. If my story can reach just one Mommi out there, then that’s one Mommi not having to fight this fight alone.
Until next time, stay strong, stay encouraged and know I’m praying for you. Soon enough we will make all the innumerable pieces of this autism puzzle fit.
Read another one of Shamika’s great blogs here: https://mommination.com/fitish-mommi-and-proud/
Links to the organizations mentioned above:
Alta California Regional Center: https://www.altaregional.org/
HollyRod Foundation: https://hollyrod.org/our-mission/
Autism Speaks: https://www.autismspeaks.org/about-u