When my son was around 18 months old, I started to worry about his communication abilities. By the age of 2, it became an even larger concern, as most kids by that age are able to say around 50 words and string together a sentence or two. By 2, he had less than 20 words in his vocabulary and struggled to communicate with us. I wondered if I should get an evaluation with a speech therapist, but being that he’s my first child, I wasn’t sure if what was going on was normal.

After speaking with his pediatrician at his 2-year well visit, we decided to get an evaluation for him. He didn’t speak at all during his evaluation but played with toys. He was in a new environment, so I wasn’t surprised by the lack of openness.

We started speech therapy about a month after his evaluation. I sat in with the therapist for at least two months. Any time I tried to sit in the waiting area, he got upset. Noticeably, it took him some time to start to grasp his therapy. Sometimes he wouldn’t speak at all during his sessions and would wait until he was in the waiting room with me while his therapist came to talk to me.

He’s been in speech therapy for a year now. He’s made some improvements and is still a work in progress. That leads me to what this blog post is really about.

At least once a year, as kids meet most of the goals made for them, their therapist reevaluates them to see whether or not they still need therapy, and if so, where the child might be lacking in certain areas.

I don’t think I ever saw a copy of his initial evaluation, but this time around I did. I took some time to read through it and felt discouraged. I didn’t think much about it again until their receptionist emailed me a copy of it (the first was a printed one). I don’t know why I didn’t notice it or think about it much until I saw the email.

There at the top was his diagnosis: mixed receptive-expressive language disorder, or MERLD.

MERLD is either developmental or acquired. If it’s acquired, it’s because of direct brain damage. Developmental doesn’t have a clear origin. Either way, it often means a difficulty with expression and understanding what’s being communicated to you. I’ve seen other children with MERLD that also have autism or ADHD.

As I read more about this disorder, I became overwhelmed. The main thing I noticed was that the ability to communicate can be a lifelong struggle. While this bothered me, it recently hit me in the heart.

We were getting Easter bunny photos.

This isn’t the first time an adult has tried to talk to my son, not knowing his limited ability to communicate. Usually, it doesn’t cross my mind; I carry on with my day. But as I drove home, I cried almost the whole way.

The photographer was very patient, trying to get my son comfortable with the Easter bunny. He asked him basic questions, like how old he was and if he liked this or that. But he couldn’t tell him how old he was, as it wasn’t a question he understood.

On the way home thinking about this interaction, which was entirely positive, jilted me.

Is this the existence in which my son has to live? One where adults assume he talks like most toddlers and can answer questions that seem to be easy? Will he be able to interact with other kids?

I’m around him almost 365 days a year, and sometimes I have trouble understanding what he’s trying to say to me. Those who don’t know him well or understand how he uses language will likely have a difficult time interacting with him. This leads to frustration for him when others aren’t able to infer his requests or something he’s trying to express.

I know it’s likely he’ll be doing speech for a long time. He’s coming up to the goal of 50 words. He understands more than that but has a harder time speaking certain vowels and sounds.

Ever since reading about this diagnosis, anytime I see something related to speech I can’t help but cry. Sometimes as a parent, I wonder how we’re supposed to help our children overcome these struggles. Am I doing enough? What else can I do?

I don’t have the answers.

I don’t know the future.

I’m scared because kids can be mean. I hope that by talking about this here, someone out there will be able to give me their guidance or maybe I can be a help to someone else heading into the unknown.

Does your child have problems with communication? What advice do you have for parents in a similar situation? How have you worked to help them overcome these obstacles? Sound off in the comments below!