The Start to My Journey as a Mom

Normal pregnancy, no illness, not born premature, all milestones reached at normal pace by age 1; Common questions I was asked on all forms again and again as I began my journey for answers. Looking back the first year seems so easy. There was a bliss of not knowing that our lives would be anything out of the ordinary. Our son was a healthy, happy baby boy. There were no signs for us, within his first year to suggest otherwise. He talked, he played with toys, he could run and jump and kick a soccer ball far superior to many kids his age. There were no real worries to be had for my Damion.

In some ways it seemed sudden, although in reality it took a few months for my boy to hit the peak of his regression. The most notable point for me was with his speech. He had gone from saying multi-word phrases to less and less over the course of a few months. I even used to joke about it saying that he was just starting to get lazy and say only one word to get across what he wanted. I didn’t see the other signs yet, but little by little it became clear that we may have to look into at least this speech issue.

Even though we had concerns, I didn’t push anything as fast as I probably should have. I don’t think really knew how to push at that point. I mentioned to our pediatrician at my sons 18-month check-up that we had concerns about his speech. I told the doctor that it seemed like he was saying less than he had before. He pretty much brushed it all off. He had me fill out a basic questionnaire (for those familiar, the M-CHAT), the problem was I didn’t fill it out properly. I kept giving him credit for skills he had already lost, just because I had seen him do them before in the past. So, the doctor said there was nothing to really worry about, and he was sure his speech would improve with age. I hung onto that notion for far too long, which was definitely not a service to us.

Baby number 2 was on the way (arriving when my oldest was just 20 months), so a lot of the next few months were just filled with new baby prep, regular fears of how my boy would react to our newest edition, and everything else that goes along with a new baby. The rest was set on the back burner.

As Damion came up on his second birthday the meltdowns began. I remember specific moments at his two-year photos and second birthday party, where I just couldn’t seem to calm him down the way I used to. Even on days these days where I was giving in on pretty much anything he wanted to try to keep him happy for the event, it still didn’t work. The communication gap became more noticeable by the day.

We went for his 2 year check up and once again brought up all of our concerns. My focus was still mostly around his speech at that time, although looking back there were probably plenty of others such as his sensory issues, extreme pickiness for food, etc., that could have been said as well. The doctor was still pushing that he didn’t have concerns, telling me stories of his own granddaughter that could barely talk at all at age two and within a year was never quiet. He continued to give me a false sense of comfort, but this time I began my pushback. I insisted on getting the issue looked at more in depth. So, he referred us where most parent seem to start with this journey- a hearing and speech evaluation with our local children’s hospital.

The hearing test came back pretty much inconclusive. He didn’t really pay attention to the noises that they made in the sound box. They also tried putting a device in his ear to check the pathway for fluid. They said the device showed that he may have some fluid in his ears but they couldn’t say for sure, because his crying through the whole process could affect the results. So, we went to an ENT shortly after who confirmed that there was no fluid that he could see, which stopped my possible hearing excuses. I could get on board with the idea that he was hearing things muffled but I personally never saw him having a true hearing issue. I mean, this kid could hear the intro to his favorite show come on, or even the opening of his beloved bag fruit snacks being opened from across the house. So, we moved onto our speech assessment.

I don’t remember much on the specifics for how the speech therapist tried to get him to talk. The thing I remember most from our encounter was her directness. She knew what was going on, and she tried to tell us in a way that she was allowed. She never said the word autism, but she did suggest very directly that there was something more than just a speech issue. She knew before I could even let myself think it was a possibility.

I started looking for more and more answers on what I should do to help him. You’d think having an older brother on the spectrum I would know exactly where to go and what to do. But awareness and interventions and most everything else had changed greatly from the 1990s on this issue. I talked with my mom and used her advice where I could, but I needed more help on what was available now. Internet searches led me to seek out Help Me Grow, which was the early intervention program offered through our county.

Not too long after his second birthday, Help Me Grow came out to the house to conduct their evaluation. They too, are not in the business of giving a diagnosis of any kind, but there was no doubt that he would qualify for services. Between holiday breaks and getting our kiddo added to their schedule, our services got started a few months later.We met with them twice a month. In the meantime, I had also worked out a way for him to go to a local daycare 1 day a week.

I had begun to make the excuses for potentials on what could be the cause of the issues, trying my best to convince myself that it wasn’t autism. So, a great excuse I told myself was that he just wasn’t really around any kids. At that point I was working part time, and the days I did work he was watched by either my mom or my grandma. The only interaction he had with children was with my daughter who was under a year still, so this daycare thing seemed like a great idea at the time.

In reality, it was awful. I took him completely out of his comfort zone, his regular routine, and threw him into a place with a large amount of noise and stimuli. He was so overwhelmed that he spent most of his days crying himself to sleep on the teachers lap. His time there was short lived, as I came to the realization that he was not getting used to it and that it was not helping.

The developmental specialist that did our sessions through help me grow became more and more helpful through our sessions. Over time we became fairly close, to the point where she felt ok enough to be frank with us as well. She thought he was autistic. At the time, I didn’t really appreciate the way she told us, but looking back I think it was what we needed. After the dust settled, we set off to start our journey for his formal diagnosis.

“ After the dust settled, we set off to start our journey for his formal diagnosis.”