Trust Your Gut

The best advice I can give to any parent or caregiver is to TRUST YOUR GUT.  You know your child better than anyone else. And if something seems off, it probably is.

Long before we had an official diagnosis, I knew in my gut that our family was different from the majority. It was generally chalked up to me being a first-time parent, an over-worrier, or what my husband lovingly refers to me as—a “wart.”  But deep down, I knew it was more than that.

When I observed the families and children around us, our day-to-day life with our oldest son looked so different. I noticed it in breastfeeding group, swim lessons, and playgroups. From an early age, he was always “on the go.” He didn’t sleep well, and he was a “picky eater.”

While other children would sit contentedly in their mother’s lap or play nearby with a toy while the other moms sat and chatted, I was constantly chasing after him—first when he was crawling, then walking, and eventually eloping.

Eleven years later, sleep is still a struggle.

Our oldest son has always been an early-to-bed, early-to-rise kind of kid. Most days, he was awake before the sun even came up. And let’s not even talk about sleeping through the night. I can probably count on one hand the number of nights he has slept through the night without waking up and coming into our room.  Eleven years later, I still cringe when someone asks when he started to “sleep through the night.”  Sleep. I never knew how much I would miss a good night’s sleep before I became a parent.

And then there was the “picky eater.”  To this day, he is still a picky eater.

When our oldest son was born, I nursed him. He would only nurse for about 10 minutes around the clock, every two hours, for an entire year. I had a wonderful lactation consultant who told me he was just a “lazy nurser.”

At a year old, I was still concerned about his nutritional intake. I brought him to a nutritionist, kept a food journal, and was reassured that although he was on the low end, he was fine.  Another year went by, and he was still my little peanut.

Our other son was born just 14 months later. The boys were the same size and were sharing clothes. But our younger was a great eater and had been from the beginning.

Having our boys so close in age made the differences between them glaringly apparent.  When our oldest son was two, I brought him back to the nutritionist. By then, we were living in another state because of one of our many military moves. We saw a new provider, and I heard essentially the same thing I had heard before.  He was fine.  But I still felt like something was amiss.

A month after he turned three, we were preparing for our third military move—this time overseas.

I enrolled him in a preschool program in England, where he would eventually move up to their “Infant School” that fall.  After a few weeks at preschool, I asked his teacher if he seemed different from the other children.

Her response was:  “I’m not a doctor.”  But I wasn’t asking for a medical diagnosis.  I was asking, after 20+ years of educating preschool-aged children, do you see a difference in my child?  I wanted to know that what I was seeing was real.  I wanted someone who worked with children every day to validate what I was observing.

Two years later, as I was walking to pick up both boys from Infant School, I ran into that same preschool teacher.  I told her our son had been tested for Autism and had received a diagnosis.  Her response?  “We always knew there was something.”  I immediately became enraged.

Two years earlier, I had asked whether his behaviors seemed different—not because I wanted a diagnosis. I wasn't asking her to diagnose my child.

I simply wanted to understand my son.  I wanted to know what I could do differently. I wanted to find supports that could make our day-to-day life easier. I wanted to help him thrive.  And all along, they had seen it too.  That comment still gets to me.  Because it reminds me how easily a parent can be made to question what they know about their own child.

Once we received the diagnosis, so much of what we had experienced over the years began to make more sense. We had a better understanding of what supports we could put in place, what resources we needed to seek out, and what we could do to help him thrive.

We also learned something equally important:  What works today may not work tomorrow.

As our children grow, their needs change. Sometimes we must change course, try something new, regroup, and start again.  That is advocacy.  At the end of the day, nobody will advocate harder for your child—or the person you provide care for—than you will.  Even on the days when you feel like you aren't making progress…. Even on the days when you wonder, why am I fighting this constant battle?  YOU ARE MAKING A DIFFERENCE.  Not just for your child, but potentially for other children and families walking a similar path.

TRUST YOUR GUT.  If I had given up and simply accepted the answers I was given after seeking advice from professionals over the years, we would not be where we are today.

Never give up.

Give yourself grace on the hard days.  You aren't always going to get it right. You may carry guilt over what you should have done, could have done, or wish you had done differently.  But at the end of the day, you are trying.  You are learning.  You are showing up.  And you are doing your best with what you know at that moment.  It is okay to take a break.  It is okay to regroup.  It is okay to step away from the fight for a moment, catch your breath, and then get back in it.  Because advocacy isn't about being perfect.  It's about continuing to show up for the person you love.

Trust your gut.  You've got this.  You're doing a great job.  I see you.