Our Journey with Developmental Delays

I spent a long time ignoring the signs; ignoring the little things, that pointed that my son might not be meeting the average developmental marks. Sometimes, I would agonize over it for days at a time, until I would eventually decide that the nagging little voice in my head, well, it was WRONG.

I would watch him through the day, playing-- chatting to himself in his own little world,-- perfectly fine until I would try to participate in whatever he was doing. "Why won't he let me interact with him," I would wonder to myself. "Why won't he just look at me and listen to what I say?"  

"Well, kids like to be independent. He's just an independent kid," I would silently decide. And then I would watch him. And then I would try to teach him. And then I would research. And then I would worry.

Each time he learned a new word, I would get so excited. "See," I would tell myself, "you were overreacting! He's fine! In fact, he's perfect." I would tell everyone how wonderful he was doing. And yet, that little voice in my head still would not stop.

Weeks after learning new things, he would drop the skills and words he had proudly shared with me before. "Why isn't he saying that word anymore," I would end up asking myself. Again, I would refuse to accept the possibilities. "He's just learning new ones, that's all," I would suggest to myself. I would console myself with the idea that he must just be investing too much energy into other things, and not enough into talking.

And then I would watch him, and I would listen, and I would try to teach him. Again, and again, and again. The excuses in my head were always the same: he's just independent, he's just too busy with other things, he's just fine.

Periodically I would reach the point where I could consider the possibilities, and I would make the mistake of mentioning my worries to someone. Nearly every time, I would get a response telling me that I was over reacting. "Boys learn these things slower than girls", I would be told. Or  "Well, all kids are different." A few times I was even told, "Maybe it's your parenting; are you talking to him enough?"

I'm sure they were trying to help; I'm sure they were telling me what they thought I wanted to hear. But if I could go back in time, I just might tell them to stop it.

I would leave each conversation with a feeling of shame --or more so, embarrassment-- embarrassment that I would be wanting to hear that someone thought my son wasn't perfect. And then I would once again smoother the feelings that had been so hard for me to even consider. I would make a pact with myself to put those feelings aside and never, ever, point out a weakness in my precious boy again.

And then I would wait. And I would watch. And I would worry.

He would learn more skills, and he would forget, and he would learn again, and he would forget again. I became quite adept at finding excuses as to why I shouldn't be worrying about it. Others would validate those excuses, and so I continued to use them. But yet, the nagging refused to leave.

It was until his baby sister was born, that I really started to voice my concerns again. I would see vast differences in how quickly she was learning things. It was hard to deny that he had not learned the little social nuances at the rate she was. "But remember, boys learn slower than girls," I would remind myself.

When I would timidly voice my worries, I would hear the well-known "I don't think you have anything to worry about", the off-handed "I think autism is extremely over-diagnosed", or simply, "I think he's fine."

And so, I worried. I taught some more. I researched. I wondered, and I cried.

At one point, I was positive that his lack of talking had to be because of his chronic ear infections. But when we put tubes in his ears, we were told he had above average hearing. I found myself internally asking, "Then why doesn't my son listen? Why can't he talk clearly? How is it possible, that this is not the reason he doesn't communicate?"

As he continued to grow, he became more frustrated, talked less, and began slamming his head into walls again. "I thought we outgrew this phase,"  I would whisper to myself, "everyone said he would stop this, with time."

And then the biting started. And it got worse, and worse, and worse. The first time he bit someone else's child, I nearly cried, right then and there. "I must not be teaching him the words for how he feels...," I would explain to myself. "I need to teach him what he is feeling; then he will stop this."

I turned into a broken record. "Connor, are you feeling angry? This is what angry feels like. Connor, can you say angry?"

 "Sad, Connor. Are you sad? It's ok to feel sad. Can you say sad?"

I waited. I listened. I watched. I taught. I researched. And I worried some more. But still, it did not get better.

He became obsessed with little routines. It came on so quickly that I would have no idea what triggered his melt downs. I would beg him to tell me what was wrong, but he was never able to verbalize his needs. I started asking him to show me what he needed, because I knew no other way to understand. After weeks of these melt downs, he finally began nudging me in the directions that he wanted me to go or turn after I asked a few times. I would show him one thing after another, waiting for the anxiety in his face to decrease. Then I would repeat my question, "Connor, is this what you need? Do you want a drink?" When the root of his problems was discovered, I would attempt to explain the proper way to get what he needed. Despite my efforts, nothing would change.

It would be little things, like forgetting to lean against the counter in a specific place, that would make him freak out. It made no sense to me, and despite the little voice in my head  telling me these things weren't normal, I continued to wait, and to watch, and to worry.

Then one day, it happened: Evelynn began doing things that Connor had learned only months before. She began pointing. She began waving. I knew she was already trying to communicate with me. The question haunted me: "How is it possible that my almost-three  year old just recently started pointing, when my 10 month old already mastered it so quickly?"

My heart broke. I had to accept that Connor was not learning at a normal rate, he was not talking at a normal rate, and his social skills were not where they should be at his age.

I could not deny it anymore. But, a feeling of peace overcame me in my moment of despair. It would be ok, I just had to stop denying that there was a problem.  

I ventured to say my concerns out loud, but I was afraid. Instead, I asked around about autism signs. Each time I would hear a symptom that I could see in Connor, my anxiety would increase. "I need to do something," I would frantically tell myself.  "I need to know how to help my baby."

I hesitated to explain the reason for my strange questions, because I was terrified that I would once again be told that I was being paranoid; that I was seeing signs that weren't really there. But-- for the first time ever-- that didn't happen.

I was encouraged to talk to his pediatrician. I was encouraged to trust my gut. And I was encouraged to hold on, and to pray.

I called the office and left a message for his doctor, explaining my concerns. I was afraid I would receive a response that he was fine, but once again, I did not. I was told we were being referred to a developmental pediatrician.

As the appointment day drew closer, I stressed, I prayed, and I worried. I wanted desperately to have answers to my questions, and to know what to do to help our sweet little boy. I began to be brave enough to tell people that Connor was going to be evaluated. But talking about it didn't bring me the answers I needed. I knew only time would bring that.

When the day of his appointment arrived, we were nervous, we were hopeful, and we were ready.

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We left the office that day, starting a journey that may not be completed for many years. It starts with a developmental delay diagnosis, and another appointment in six months to reassess and work from there.

We were told that he definitely has signs that are common in autism. We were also told that he is learning things that sometimes kids with autism don't learn. This means that we could possibly be looking at a diagnosis later down the road, or he could overcome his learning delays and it could be something else entirely. Only time will tell us what are the reasons for his delays. Either way, he is behind, and we need to get him the help he is now eligible for.

Until then, we will be hoping, praying, living, and loving -- just as we were before.

***this was written for a personal journal, but I decided that now is the time to explain to our friends and family what our little guy has been dealing with. I decided that rather than explaining one by one, I would share the thoughts and feelings that came from my heart.