‘DON’T let it hurt him like it did your brother.’ I can still smell the hospital and hear him cry. My son would be SUCCESSFUL.’: Sister of brother with autism becomes single mom to special needs son

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“My name is Jessica Ann Kong, and I have been part of the special needs community for as long as I can remember. My story begins in the 1990s when my little brother was born. I was only five years old, and my mom, little sister, and I were living with my grandparents because my dad was deployed in the Gulf War. At the time, it was extremely simple. My mom had a baby in her belly and she went to the doctor one day and my brother was born. For my parents, it was much more complicated because they knew pretty quickly my little brother, Brandon, was unique.

I was extremely blessed to grow up as a military brat and travel to several places, including Florida, South Carolina, and Germany to experience my childhood. When you are forced into struggles and difficult conditions, you have the option to shrink away or embrace it. I chose to embrace it and tackle the struggles as an adventure. Through my childhood adventures, I had a front-row seat to watching how the world challenged my parents raising my brother and how the world challenged Brandon’s uniqueness. Looking back, all the things that were signs that Brandon was autistic were just things I came to enjoy because I thought it was so cool my little brother was different. He would walk on his tiptoes, speak like he was younger than his age, refuse to eat food that was touching, and he loved to be repetitive and silly.

Courtesy of Jessica Ann Kong

Routine and repetitiveness made Brandon feel safe, so I can’t tell you how many times I watched the movies ‘The Land Before Time,’ ‘We’re Back!’ or ‘An American Tail.’ However, I loved that watching these movies so much meant Brandon would learn the songs and the entire script of each movie. He could easily repeat them and would often script them throughout the day. I didn’t mind watching or listening to the same things everyday, but I quickly learned the rest of the world thought scripting and being repetitive was different and made you a target for bullying. The school years exposed my family to rough times. When I think of the amount of time my brother spent away in the hospital due to his disabilities, it still breaks my heart.

I can still smell the hospital and hear him crying as we would leave after visitation because the doctors needed him to stay for weeks at a time due to adverse reactions he suffered from medication. These long hospital stays included three instances where an ambulance came to pick him up from the elementary school due to seizures. Being older and understanding not all families dealt with these events caused tremendous panic and fear. I was a big sister who couldn’t protect her little brother, and I didn’t feel it was okay to discuss these feelings with anyone because I was supposed to be my parents’ big girl helper, and I had a little sister who didn’t understand. I also didn’t know anyone else who had siblings who were experiencing the same scary things.

Despite the medical struggles, Brandon also struggled with school and being in social situations. This was my first introduction to special education and the importance of inclusion. The extreme sadness I experienced watching my brother not receiving the services he desperately needed and the lengths his peers went to exclude him lit a raging fire in me that still burns today. I didn’t know it then, but this fire would lead me through my life and even into my own special needs parenting journey. With the love and support of family and military friends, we made it to the light on the other end of the tunnel. Brandon is thriving. He has held several different jobs, including management positions, and lives on his own.

When I became a mom, he became the best uncle my kids could ever ask for to be in their lives. My brother exceeded the world’s expectations. He was constantly told he could not achieve his goals and desires, but he told the world, ‘Just watch me.’ I couldn’t be more proud to be Brandon’s sister. He is a world-changer, and I know he is an inspiration to many. My own children idolize him, including my youngest, Brayden, who is also autistic and has a name similar to my brother in his honor. I married young and became a mom at the age of 20. After having my two sons, Dominic and Brayden, I divorced and became a single mom. As you can imagine, being a single mom is difficult without the added struggle of balancing therapies, evaluations, and constant school meetings.

Courtesy of Jessica Ann Kong

I felt that fire in my heart lit so long ago whisper to me, ‘Don’t let the special education system hurt Brayden like it did Brandon.’ I made a promise to Brayden and myself I would make sure Brayden would be successful in school, and no one would make him feel like he needed to be neurotypical and hide his uniqueness. I began to research as much as I could on early intervention, inclusion, special education services, behavior therapy, and speech and occupational therapies. If I thought it would help my child, I was researching it. Every special needs parent has a different journey, but I can promise you, there will be some amazing people who will change your life and the lives of your children. When Brayden was three and my oldest, Dominic, was six, I remarried. My husband embraced us all and celebrated the quirks that made us special.

Courtesy of Jessica Ann Kong

At the same time, Brayden had just begun a disability preschool with the most amazing teacher named Mrs. Bryant. Brayden loved attending school and he was progressing in so many different areas. To this day, Brayden remembers the introductions lesson they practiced. Mrs. Bryant would have the kids introduce themselves and ask the other student’s name. She had them give a compliment about the other person as well. Brayden’s favorite complement was ‘I like your hair.’ Whenever he meets anyone now, he follows the introduction steps he practiced years ago with his favorite compliment, regardless of whether or not the person has hair or not. It is one of my favorite parts of meeting new people with Brayden.

Courtesy of Jessica Ann Kong

Although we were finding normalcy and stability in Florida, we felt our family was in need of a fresh start. When my husband, Harry, was offered a position in Colorado, we were excited to start a new chapter and make new memories. Little did I know, I would be reminded how cruel the special education system could become. We were progressing through the Colorado state re-evaluation process, and for the first time I heard, ‘Yes, your child is delayed but he can still learn. We don’t think he needs to continue special education services.’ I have never been so angry or overcome by emotion before. I asked, ‘How can you say that he doesn’t need services when I had to translate everything my son said to you during the assessment? How can he access his education without assistance?!’ I started sobbing and refused to sign any documentation that did not state he needed an IEP. I honestly couldn’t tell you how he kept his IEP during this time, because I had no training on how to advocate appropriately at this time.

Courtesy of Jessica Ann Kong

The only two good things that came out of living in Colorado was we received our initial diagnosis of autism with ADHD and anxiety disorder, and we found some amazing opportunity for inclusion. We had joined a social skills class called Dino School and we became a Scouting family. We met the most patient and understanding people who embraced us and helped us blossom. We went on adventures in the mountains and Brayden became fully verbal during this time. The two years we spent in Colorado had me constantly battling the school district for services for Brayden. I was an emotional wreck anytime I saw the number for the school pop up on my phone. We were dealing with bullying for the first time and had an incident with a child grabbing and breaking Brayden’s glasses, and Brayden retaliating by hitting the child in the face. I felt like every time we were close catching our stride, we were hit with another curveball.

Courtesy of Jessica Ann Kong
Courtesy of Jessica Ann Kong

Harry was offered another opportunity to relocate our family to Alaska. I agreed this would be an adventure we could not pass up. I was extremely nervous about experiencing another special education re-evaluation, but I knew we would continue to fight for the things Brayden needed to further his education and independence. As many of us do, I was relaxing at home and scrolling through Facebook. I came across an advertisement for an online course called Become a Master IEP Coach with Catherine Whitcher. The course included explanations of each area of the IEP, the process, proactive advocacy techniques, and so much more. I made a decision that would change all of my struggles with the special education to become manageable. I enrolled in the course to help my son, but it opened many doors for me.

Courtesy of Jessica Ann Kong
Courtesy of Jessica Ann Kong

After completing the course, I became a knowledgeable advocate for my son. I realized I was making mistakes before, but I was able to fix them with the information I gained from the Master IEP Coach course. After building my own confidence, I began helping other struggling special needs parents with their journey through the special education system. I was inspired by the connections I made through IEP consulting, including an email I received from a BCBA to receive a Behavior Technician Certification. I was still pumped from the adrenaline of confidence, the excitement of feeling Brayden was receiving the services he needed and newfound knowledge of IEP consulting. I decided to keep those positive feelings going and said ‘Yes!’ to this opportunity as well.

Courtesy of Jessica Ann Kong
Courtesy of Jessica Ann Kong

I had never been introduced to Applied Behavior Analysis Therapy before this invitation, and I knew it would be beneficial to helping Brayden as well. The thought of working with people with autism excited me even more than working with IEPs. I knew early intervention was becoming popular, but I also knew from experiences with my brother that services for children older than high school age and adults on the spectrum were limited, so I took a job working with adults. I felt our family had reached our best lives. My husband enjoyed his job and we had family friends. Brayden was excelling in school with appropriate accommodations and modifications, while Dominic had found his own special place within Scouts and sports, too. I was working with special needs families, creating appropriate IEPs, and providing services to adults with autism. We were all so happy.

Courtesy of Jessica Ann Kong
Courtesy of Jessica Ann Kong

The biggest challenge for our family came on January 11, 2019, when I was in a car accident while providing community therapy services to a client. An older woman crossed into my lane and hit my vehicle head-on at a high rate of speed. I suffered many traumatic injuries to my head and my right side of my body. It was the first time in my life I couldn’t take care of my family. It has been two years and I am still recovering from this accident. We decided we needed to be closer to family, and we relocated again to the lower 48 right as the pandemic was starting. We made sure to get the kids situated in school, but I also made the big decision to start working at an ABA clinic called Autism Solutions. My training as a Master IEP Coach and RBT has been so valuable with all these transitions. As much as I wanted continue my work with older people on the spectrum, I am too afraid to drive through the day.

Courtesy of Jessica Ann Kong

I have fallen in love with the work I am doing at Autism Solutions and was asked to become a teacher. It feels like things have fallen back into place, because I am working with the secondary-aged kids. Although my story is long and complicated, I wouldn’t change a thing. My family and I have learned great amounts about the special education system, experienced inclusion, and why all of this matters. There is a quote I heard after Brayden received his autism diagnosis I absolutely love. I feel it is a great representation of my life, and possibly many other special needs parents: ‘Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be and that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.’—Joan Ryan.

Courtesy of Jessica Ann Kong

My journey as a special needs parent is nowhere near done, and I know I will continue teaching and influencing kids on the spectrum for as long as I can. I cannot wait to see where this beautiful life takes me and my family as we continue to grow and reach our potentials.”

Courtesy of Jessica Ann Kong
Courtesy of Jessica Ann Kong

This story was submitted to Love What Matters by Jessica Ann Kong, RBT, of Farmington, Utah. You can follow their journey on Instagram, Facebook, and their website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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