Benji’s delayed diagnosis

After a long afternoon of testing and waiting, the audiologist returned and sat us down. After a long day of waiting and testing, the audiologist announced quickly that Benjamin had hearing loss …”.

After being told that his hearing was good, I was completely taken aback. I missed the rest of what was said. The next thing that happened was a wave of relief, which I could not stop from bursting out.

You might not think of relief when you hear your child’s diagnosis. But those of you with delayed diagnoses may understand and have experienced it.

My other instinct’ had told me that something was wrong with my little boy ever since he arrived, but finding out he was deaf made a lot more sense. This meant that the door for support was finally open.

It is painful to know that your child is in pain but is unable to do anything about it. Benji’s years prior to his diagnosis were filled with sleepless nights, worrying about what he would need. I felt like I was failing Benji.

We struggled as a family with what we now know was a huge barrier to communication. He and our family have been affected by the delayed diagnosis, and it is possible that he will not “catch up.” On some days, I’m still engulfed in anger and mum guilt over the time lost. Then, I focus on the practical things I can support him with.

We had tangible options to support Benji when we knew he was deaf. We were underprepared, but we had Google at our fingertips, and we began to learn as much as we could about Deafness. I used to watch stories in British Sign Language on YouTube without realizing that there was a difference between Sign Supported English (SSE) and British Sign Language. I did not know that BSL is a complete language with a different grammatical system to English. We had no idea what Deafness was. We soon discovered that Benji had a hard time following us when we did not let him know that we were talking to him. Lighting and position in conversation also affected his ability to join in.

Benji was diagnosed with autism and could not sign or talk. Learning BSL changed everything for all of us. We realized how much he was missing.

It was a relief to get his diagnosis. The diagnosis was not only a shock but also an opportunity to learn how to navigate the unknown. It has been challenging for a family of hearing people to learn another language and culture. At times, it was overwhelming but also fun and exciting. Our family has enjoyed learning together. We’ve found local families with deaf kids and deaf adults who have shown us their full lives. A team is now in place to support him in his education. Now, Deafness isn’t as frightening as it used to be.

Benji has profound Deafness and is also a funny, clever, cheeky little boy. He is everything he should be. I could not be prouder.