The Challenges and Triumphs Raising Children on the Autism Spectrum

boy on autism spectrum with his guitar
Photo courtesy Tracy-Ann Samuels

Our son Trey was diagnosed with autism at five years old. I suspected something was wrong long before that. He was hitting all of his milestones as an infant: he walked after 12 months, he was babbling. However, after two years, he went silent. We did not know or understand what happened. Once I had my daughter and was on maternity leave, I knew Trey needed help. Getting the call from his public school teacher that Trey needed to be evaluated was the worst and best day at the same time. I finally got confirmation and I could do what I needed to do.

April is Autism Awareness Month. To celebrate it, here are lessons I have learned while raising a child on the autism spectrum, as well as silver linings from the pandemic that have enabled me to understand Trey even more and better support him. For how to support parents of children who are autistic, see this article and find additional resources here.

Dealing with Guilt and Anger 

Once Trey was finally diagnosed on the spectrum, I felt helpless. I did not smoke or drink, I took my pre-natal vitamins. I felt angry because I thought I failed my child. I had allowed others to prevent me from getting early intervention services. Children diagnosed with autism spectrum disorder between newborn and three years old are eligible for early intervention, but not after. We missed the window for Trey because he wasn’t diagnosed until five. Children of color tend to be misdiagnosed, which often leads to not getting the adequate services. If I had followed my instinct, he would have received services at two years old. In order to move past the deep depression, I felt I had to mourn the child I thought I was going to have. It was not easy. There was also a lot of guilt and questioning God. I had to see the blessing in this situation.

Finding the Right School Takes Time

My sister who is a special education teacher suggested a lawyer friend of hers who directed us to The School For Language and Communication Development (SLCD) in Glen Cove, New York. What would be Trey’s fifth different school in five years, SLCD elementary school was the first place where we saw improvement. In a matter of months, Trey was speaking more, he was learning to use his hands. He was able to put on his clothes the right way, button his shirt. I remember Trey being so happy the first time he learned to tie his shoes. He began to put sentences together that made sense. Things we take for granted were major milestones for our son. I just saw the light come back into his eyes.

Discover Your Autistic Child’s Gift

When Trey started SLCD middle school (now Tiegerman), the biggest complaint we received from his teachers was that he would constantly tap on his desk. We realized that Trey was hearing music. Once we began to foster his love of music, we saw him improve even more. He joined the school’s rock band where he sang lead and played the keyboard. We got him a set of drums to play at home and he was like a kid in a candy store. He currently takes music classes online and plays the violin and guitar. Trey is able to play songs on the piano by ear and able to learn the technical aspects of reading music. For him to be able to participate and complete an entire piece of music is a triumph for us. I never thought he would thrive like this. For him to be able to participate in a recital in front of an audience is amazing.

Remote School Challenges & Wins

Some of the challenges during the pandemic is making sure Trey’s needs are met especially when it comes to academic development. During remote learning, I was able to pay more attention to his schoolwork. I realized some of the teachers were giving him a pass on incorrect work. I was able to narrow in on his needs and issues in math. I saw that he wanted to learn, and I trusted the school to educate him, but he wasn’t being given the opportunity to improve. I reached out to the teacher and communicated that I would not accept any social promotion of my son. I took the time to study with Trey because he became complacent. I gave him extra math work, I spoke to him about improving his handwriting, and I watched him succeed. The look of pure joy on his face when he got the answers to his math homework right on his own was priceless. I was not going to accept him not learning because he has a diagnosis.

Applied Behavioral Analysis for Teenhood

Another triumph is Trey being able to be self-sufficient. He went from being unable to put his clothes on properly to washing his own clothes, and learning to cook (he helps me bake). One of my main concerns is how Trey would survive if we are not around. I feel it is important that he becomes independent. He will be 14 this year so we’re at the age where you’re thinking about transitioning to high school. We have many questions to explore: What does he need to be successful in a new setting? How can he travel on a bus or a train? How can we teach him about money and how to use it in a store? How will he learn about stranger danger, and who he should not talk to? These are basic life skills that we may take for granted.

Trey wants to go to Frank Sinatra School of the Arts, a musical high school in New York, but I’m nervous because he has never dealt with mainstream schooling since his experience in kindergarten. Socially, is he ready to adapt to kids who are not on the spectrum and who may treat him differently? As parents of a special-needs child, we have to address our own feelings and really look into ourselves to ensure we are not impeding their ability to succeed with our own fear. To make sure that I was not the issue, I added Applied Behavioral Analysis (ABA) services on top of the speech therapy he continues to receive. He can work on his social cues and socialization in role-playing situations.

Guardianship and Adulthood

As Trey’s parent I am still his first teacher. This period of transition is critical. Not only is he changing physically, going through puberty, he will have to face new challenges and responsibilities that come with getting older.

At around 17 years old, parents with children on the autism spectrum apply for guardianship because when the child turns 18, there are certain things you can no longer do for them medically. In case of an emergency, you still have authorization to make medical decisions for your child.

My goal is to make sure we are doing enough for Trey to make sure he succeeds. That may mean looking at sites that offer job placement for kids on the spectrum, preparing him to take the regents exam so he can work towards a high school diploma, and even preparing a will to make sure we sustain him if something happens to us.

I really value this time I have with Trey due to the pandemic. I have learned his strengths, his weaknesses, and it allowed me to work on what he needs to be a whole person.

Tracy-Ann Samuels is the co-owner of The Amazingly Sensational Kids (TASK) media company which publishes superhero children’s books to spread awareness for autism, co-written by Tracy-Ann and her husband, Jamiyl Samuels. The Amazingly Awesome Amani and Sensationally Super Sandy books are inspired by their son Trey’s courageous journey as an autistic child navigating the (sometimes harsh) realities of life through his vivid imagination. Suitable for toddlers and up, TASK seeks to educate and entertain through the creation of informed written content, film, music, public speaking, and other media platforms. Their T.A.S.K. is to use Transparency, Advocacy, Sensitivity, and Knowledge in all of our endeavors to bring forth Truth, Accountability, Service, and Kindness. Tracy-Ann has a bachelor’s in Psychology and master’s in Social Work. She currently resides in Queens with her husband and two kids, Trey and Aja.

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