Beyond Words: A Mother’s Fight for Her Autistic Son

A year after Benton’s diagnosis, we began the search for private speech therapy. 

We had received services from the Tennessee Early Intervention System since he was 18 months and would lose the therapy services the day he turned three. 

The school system would take over his care, and we would supplement with private therapy.  Our insurance refused to pay for private therapy, but we felt like Benton would benefit greatly from a few more hours of services outside of preschool. 

We walked into the speech clinic, and we were taken back to a dark room with old, green carpet. They brought in a few toys, but it was mostly a barren, sad looking space. 

 I let the program director know that with all of his extra therapy and needs we could only afford speech therapy once per week.  

After the evaluation she looked at me and said “Mrs. Edwards, your son has almost no words at three. Studies show that if your child isn’t speaking by 5, the chances of him ever speaking are extremely low. I recommend at least two sessions per week if not more. You must understand that early intervention is key. You certainly don’t want to miss a window of opportunity while his brain is still pliable.” 

I felt hot tears well up in my eyes and looked away. I was not a mom that didn’t care. I knew how profoundly impacted he was. We were always learning more about autism and ways to help our son. 

We walked out to the car where I finally released the sobs. I strapped him into his car seat, kissed his cheeks, and told him how much I loved him no matter how many words he would say.  

I told him that the pressure to speak with his mouth was not on him – that he was made whole and beautiful even if he never said a word. 

I told him we would fight for him to find his voice, and if he never spoke a word it didn’t mean he had nothing to say.  He would be heard. 

I had no promise that Benton would ever speak no matter how many hours we tried to make it happen before age 5. I knew I wasn’t in control of whether he would speak with his mouth. 

God had given us the resources for speech one time per week. This was a practical reminder that it was enough. 

I sensed that speaking from his lips might not be the way that God would choose for Benton to proclaim His glory. 

As difficult as it can be that he doesn’t speak like us, there is no greater beauty than witnessing the heart of someone that needs no words to show his love and life to the world. 

Living a life with all your heart is more beautiful than a life able to speak all the words in the world.  

The systems set up to help those with disabilities are broken and flawed, and parents of children with disabilities spend more time fighting systems than getting help their children deserve. 

Caregivers spend more hours a day than most can imagine fighting those systems in meetings, working to find the right therapies and schools, and fighting insurance for denials that should be so easily approved. 

Our systems want us to give up. Some of us hardly have the strength to fight after caring for those we love every hour of every day. 

But we won’t stop fighting for them.  

We will rise up even when we think we can’t. For them. They so deeply deserve more.  

Benton, you are a gift that brings more light than we ever imagined.  You are joy, love, heart, and beauty. Show this to others in a greater way than most could ever fathom. 

You are worth more than all the spoken words in the world.