Lessons I’ve Learned From Having an Autistic Son

I was a good mom. I’d figured out how to potty train, teach manners, and have at least normal little children in the world. Then my son came along and cried for the first two years of his life. He rarely slept. Then we hit the terrible two’s only they never went away. Fits over the dumbest things. Which I know is normal for toddlers, but these were above and beyond. Was it the fact that he was a boy? He seemed “normal” to everyone else. But I constantly found myself saying am I this bad of a mom or is there something else going on here? I followed my gut and took him in for an evaluation despite the pediatrician telling me it was just behavioral issue. He was diagnosed with Autism.

Lesson 1: Trust Your Gut

Even before a diagnosis I would tell stories about him and people would tell me he was just being a little boy. Little boys are different than little girls they would tell me. I vividly remember taking him into the pediatrician’s office to try to get a referral. It was thirty minutes of him telling me how to be consistent and to give him consequences. All the things I felt like I had done a reasonable job of doing.

I walked out of that appointment and bawled in the car. I bawled the whole way home. How could I be such a bad mom?

I already had the appointment to meet with a therapist who had 20+ years working with kids on the spectrum in a school district. So I very nervously went to that appointment, and he walked out of their with a diagnosis of moderate Autism. It felt like such a relief.

The lesson I learned looking back is that I need to trust my gut. My gut regularly told me there was something more going on, but the world kept telling me I was over reacting. I let others tell me for several years that I was wrong and a horrible mom. This wasn’t true! I needed to learn to trust my gut.

Lesson 2: Autism Is Not Your Fault

He now has a diagnosis of Autism and everyone wants to help. Some say he will grow out of it. Others say a better diet cured their friend’s kid. Or what about that diagnosis you just got yourself of ADHD, a close cousin to Autism? Was it caused by vaccines, taking Tylonel when I was pregnant, etc. Did I do this to my kid?

No, you are not responsible for your child’s diagnosis. Nothing will cure them of Autism. It is a developmental delay, they can progress over time. But it will always be part of who they are. So the question now is who do I want to be going forward?

Because beating myself up with all the what if I could have prevented this didn’t get me anywhere. Looking for ways to help him got us places, not punishing myself.

Lesson 3: Keep Looking, Answers are Out There

There are so many ways to help a someone on the spectrum. Everyone had an opinion, but nobody had an answer for me. They said the school would help him. So we went that route. The school came back saying he didn’t struggle enough. That they didn’t see any signs of his Autism.

I even went so far as to get an advocate, go thru the process again, all for the same answer. It felt like a punch in the gut. He only acted this way with me? How am I such a horrible mom?

So we went looking for answers somewhere else. For us, it was Occupational Therapy and traditional therapy that have helped us know how to help him progress. But there were a lot of appointments, changing of professionals, etc. before we found them. When I wanted to give up, we had to just keep going. Keep advocating for him. Do not take no for an answer or settle for a shame-based approach. But answers can be found if you just keep looking.

Lesson 4: He’s Not Giving You a Hard Time

One of the most valuable lessons I learned, I heard on a podcast. I wish I could remember which one of the hundreds that I binged it was on. But she said, “He’s not giving you a hard time. He’s having a hard time.”

It took time for this to sink into my brain. What do you mean he isn’t giving me a hard time. Have you been at my house when he screams and refuses to eat because something is not perfect? Or had to carry him out of the house screaming everyday to make it to the bus stop on time to pick up his sisters because he was not finished with his task at hand? It sure felt like a hard time to me. It felt like a personal attack.

But he really isn’t giving me a hard time. His tactile sensory is being triggered when the mac and cheese has too much milk in it or not enough. This causes a gag reflux. It’s hard for him not to be able to eat when he is hungry.

Transitions are hard on him when it does not go his way. He was supposed to finish that train track before going to the bus stop. Not after. That was not what his black and white plan was. Adjusting does not come naturally to him. He’s having a hard time, not giving me a hard time.

These two simple sentences changed everything for me! I could now be compassionate with him instead of furious. I could see it from his perspective which opened up the doors to many more ideas on how to make it work for both of us.

So just keep telling yourself they are not giving you a hard time. They are having a hard time.

Lesson 5:  Grief is Normal, Embrace It

I was relieved when we got a diagnosis. I didn’t think I would be one of the moms who grieved this. It was a time to celebrate, now we could find answers.

WRONG! It snuck up on me in many other ways and in unexpected moments. School picture day when he can’t look at the camera and smile. The school concert when it seems so apparent that he isn’t on the same social level as his peers. Christmas morning on the way to church, when I have my own meltdown because he can not sit through the meeting like a normal little boy.

I’ve had to learn to allow the grief and not fight against. To feel how horrible, it feels. But it makes the good times even that much better. The moments when he isn’t melting down and screaming at his sisters, but instead laughing with them. All emotions are needed and the harder ones make the better ones even better. Allow them all. It’s normal and okay just the way you are experiencing this journey.

Are you a neurodivergent parent who is struggling? Book a free consult call with me. We can explore how to help you in your journey. I’d love to help you feel better. You are not alone in this mama!

Until Next Time

-Keira