Grace Siller: I’m An Autism Mom

Shedding light on the misconceptions of having a child with Autism

Bless those who see life through a different window, and those who understand their view.

When Makai showed early signs of autism at 18 months old, Grace made it her life’s mission to learn everything she could about what she needed to do to help her son. She’s learned that no matter how much research you do about autism, it’s still virtually impossible to become an expert on your child. Each person with autism is different, and there’s a saying that goes, “If you met one person with autism, you’ve met one person with autism.” — and that’s the truth.

Makai showed early signs of Autism based on the Modified Checklist for Autism in Toddlers (M-CHAT), and was formally diagnosed with Autism at 2-years-old.

Grace shares some much needed insight into what goes on in the mind of an Autism Mom and the challenges she has overcome throughout her journey. Learning about autism kicks the door wide open for more compassion and understanding for those of us who know very little about children (and adults) on the autism spectrum— and the next time you see a parent going through the ins and outs of raising an autistic child, you can lean in with more kindness and empathy.

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To start, can you tell us a little bit about Makai’s diagnosis?

When Makai was around 9 months old, I already started to notice things that were developmentally different compared to Rae at that age. Makai wasn’t pointing to things, he didn’t look at things I pointed to, he didn’t respond when you called his name, he was not interested in new toys, he didn’t respond to loud noises. Makai was also becoming more particular to food when he used to eat just about anything you gave him.

At 12 months old he had a repertoire of about ten words and those began to slowly disappear as he approached 18 months old — which then he ceased to speak. 

Makai did not mind being held when I rocked him to sleep, however, he did not like being hugged or have my hand resting on him. This bothered me and made me sad because I wanted to hug my son or put my arm around him, but he always pushed me away. I just thought maybe he got hot easily and the body heat bothered him. It also crossed my mind that he was probably not the affectionate type because as he got older he didn’t independently hug me.

Makai would often stare at the wall or ceiling for long periods of time. My mom always told me that babies and small children are able to see things that others cannot. So with that in mind, I put holy water in a spray bottle. In those instances where Makai would stare at something for a long period of time, I became Buffy the Vampire Slayer and sprayed holy water like there was a rain storm in my house! I would then sternly but kindly tell whatever “it” was to leave. Yes, I did that!

I would mention these apparent red flags to my mom or friends who have children and they would all tell me to give Makai some time to grow and develop because boys are a bit slower than girls. Interesting. However, as a mom, I knew something was not quite right. But I accepted that reasoning wholeheartedly because I strongly wanted to believe that there were no underlying reasons for Makai to not be developmentally on the same page as Rae at that age.

We can only imagine how difficult it must have been for you. Can you share your initial reaction when you found out your son was diagnosed as Autistic? How long did you need to process this?

I remember that day like it was yesterday.

Let me preface this by saying that when my daughter, Rae, was a baby and up until she was four-years-old, I took her to all her doctor’s appointments either by myself or one of my parents accompanied me. My husband, Lamont, was devoted to his job and did not take the time to attend. However when Makai was born, he promised he would do better and be available for all of Makai’s doctor appointments. Lamont kept his word from the time Makai was born and up to now. The one doctor’s appointment he was not able to attend just happened to be Makai’s 18 month old well-child care visit where his pediatrician provided me with the M-CHAT to complete. And based on the M-CHAT, Makai showed early signs of Autism.

During his doctor’s appointment everything seemed fine. They checked his height, weight, reflexes, etc. Makai appeared to be healthy. Then the pediatrician gave me the M-CHAT to complete. The M-CHAT has about 20 yes or no questions that help assess if your toddler shows early signs of autism. Autism in children were on the rise and early detection provides for early intervention. At that time, I didn’t know what an M-CHAT was. I didn’t have to complete an M-CHAT for Rae when she was 18 months old, nor was it even mentioned to me.

After answering NO to the first three questions regarding Makai’s behavior, I began to become nervous. I got to question 6, and answered NO to, “does your child point with one finger to ask for something or get help.” A lump in my throat formed and I couldn’t swallow. I think I was still breathing, but my breaths became short and quick. My heart was pounding at what felt like a million beats per minute. The red flags I questioned about Makai’s development were all written in the M-CHAT.

Question 10 was “Does your child respond when you call his or her name?” I just about lost it, and if I wasn’t sitting down already, I would have fallen to the floor with my legs buckled underneath me. My entire body was shaking as I was holding back the tears. I continued with the rest of the questions almost in a daze, answering NO to most of them. My fears became a reality. Makai wasn’t delayed because “boys are slower” in developmental milestones than girls. 

The pediatrician looked over my answers and told me that Makai was at a high risk of having autism. My heart literally sank to the floor. I felt like I had an out-of-body experience where your soul floats to the ceiling and has a birds eye view of yourself in that moment. I went numb and I did not have the strength to hold tears. I cried. But I didn’t ugly cry. I kept my composure. The pediatrician referred us to a developmental pediatrician for further evaluation.

After the appointment I got in the car with Makai. I looked at my sweet baby boy’s face as I put him in his car seat, tears continued to roll down my cheeks. I was shaking. I held his face. I kissed him. I told him I loved him and that everything would be okay. I then called Lamont. As soon as I heard his voice, the ugly cry happened. I couldn’t even speak. I heard panic in his voice as he was trying to calm me down.

I remember crying hysterically and clutching my chest because my heart was literally hurting. It felt like a ton of bricks was laying on top of me and I was being stabbed at the same time. I then explained to Lamont what transpired during the well-check and how Makai showed early signs of Autism. It was the only appointment he wasn’t able to attend and it was a life changing appointment. He felt a deep sense of guilt and regret that he wasn’t there for Makai or me. 

It took me less than 24 hours to process this. Lamont is my rock and has always been. He is Mr. Positive and a problem solver. He is the one who told me to channel my focus and energy on understanding autism, and finding out what Makai would need. He let me cry the rest of the day and night. The next morning, I was on a mission. I did my research — not so much about autism — but on what services Makai needed in order to thrive. I interviewed speech therapists, behavior therapists, and found services provided by the county for children with autism. I also reached out to a friend who has two children with autism for support and guidance.

How did this diagnosis impact your life? 

My entire life changed. Our family life changed. We were on a mission. Our focus was on doing whatever we could to help Makai, and also ensure that Rae understood what was happening. She needed to be on board as she is an integral part of our team.

What kind of adjustments did you have to make? 

I had to adjust with Makai’s adjustments. As I understood more about Autism and how it affected Makai, I had to become flexible on a daily basis to his moods, meltdowns, etc. I strongly believe in early childhood intervention, so at 18 months I enrolled him in an Autism specific pre-school class within the public school system. He also had ABA and speech therapy. Our daily schedules changed. Rae and Lamont also had to learn about Makai and his idiosyncrasies. We learned to become more patient with Makai and each other. 

How were you feeling going through the changes?

I had my days where I would just break down and cry to myself. We were living in Fairfax, VA. My parents, sister and other familial support were all in San Diego, CA. Lamont was always working. I was focused on Makai. I was also focused on Rae not feeling like we were giving Makai more attention than her. That was something I worked really hard on – Rae and Makai’s relationship, Rae understanding Makai’s journey, and giving Rae the same time and attention. For the most part I kept it together, because I had to. I needed to be strong for Makai and Rae.

Did you find that your close circle of friends and family showed up for you the way you needed them to?  

Yes and No— because I did feel like they cared, but I also felt that they felt pity for me or Makai. I definitely don’t need pity. But on the same note, I think they didn’t know how they could support me. It can be quite difficult for family and friends on the other side of the continent to convey support if they don’t understand what autism is.

Granted, we had friends in Fairfax that were very supportive because they had their boots on the ground with us. They were able to interact with Makai and be around us to offer support. I also had amazing mom friends who either had a child with autism, worked with kids with autism, or had a family member that was neuro-diverse, who were very supportive. They understood.  

You reached a point of burnout and eventually started to turn things around. What was your breaking point? Did anything in particular happen that made you realize you needed to make a change or ask for help?

It was gradual. I started feeling a sense of loss— a loss of myself. I became sad and depressed. I gave all of myself to my kids and my husband. I was the CEO and Co-COO of our family. I left my career as an analyst for the government. I didn’t have any hobbies or interests that were of my own.

I mentioned to Lamont that I wanted to take photography classes or get a license in fitness. His response was “What about the kids?” And “That would take time away from the kids/family.” I became even more frustrated and depressed. He didn’t understand what I was going through. I was mourning myself. As much as I loved my kids, I felt like I died. Me, as a woman, as an individual, died. I would break down crying and feel depressed. 

I didn’t ask anyone for help. I processed it all by myself and worked it out. It took some time for me to find myself again.

What are you doing differently now?

I have learned to take care of myself better in order to be present for my family. Physical exercise is such a huge factor in my overall well being. I exercise 5-6 days a week. Not only do I feel physically strong, but it truly makes me mentally stronger. And at 46-years-old I need to maintain my health to keep up with my kids. Working out is also therapeutic for me. I am in the zone and almost in a meditative state.

During my workouts, I process and organize my thoughts better. I am able to sort out my feelings in between reps, and I even cry during a workout if I’m having a bad day. I don’t mean to cry. It just comes out. It’s a release, if you will. And when I’m done working out, I’m also done crying. I leave it there.

I’ve been reading and writing more. I majored in Journalism until my junior year of college, and I still enjoy writing. So, I will journal or write commentaries or poems. I’ve also been going back and forth with writing a children’s book about Autism.

Makai will be 10 this August and we have been brainstorming on how we can help Makai in the future if attending college won’t be an option. So lately, we are in the planning stages of starting a small business for him. Something that he can do with Rae’s guidance.

I love to cook and have been experimenting more with cooking and baking new recipes. It’s just something else that I do for myself. I think that has been my focus— to do things for myself.

Lamont is also a different person now. He understands my needs. He’s stepped up and realized that I don’t just cook and clean. He willingly shares all house chores with me and if I need time to myself, he tells the kids not to disturb me.

Do you get affected or find yourself triggered when conversations about Autism pops up in a negative light (both in real life and on social media)? 

Seeing things on social media definitely bothers me, but I don’t allow it to get to me. Lately, I’ve been on social media less because it drains me. I don’t even watch the news anymore. I rely on Lamont to tell me what’s going on in the world. All of that just puts me off balance.

In real life, I do get triggered, but I always try to be calm and handle things appropriately. I usually ask questions to find out the person’s mindset and understanding of autism. It’s quite difficult to not take it personally. 

If you could change one thing about the narrative surrounding Autism, what would it be? 

“He/She doesn’t look Autistic”

There is no “look.” You can’t look at a person and know if they have autism. I wouldn’t be able to do that. I can observe a person for some time and assess that he/she may possibly have autism based on my background knowledge. The person making the statement obviously doesn’t know anything about autism, and it’s unfortunate that the narrative surrounding autism has given that perception.

For those who aren’t knowledgeable about autism, what would you consider is appropriate and inappropriate behavior around autistic children? 

Appropriate behavior: Ask questions!

The more you know about autism or a  specific child, the better! Some people are afraid to ask questions because they are embarrassed or scared, but the more you know, the more you will learn and become more comfortable around Makai or others who have autism. Ask me what autism is and how it affects Makai, or questions related to what Makai likes or how your kids should play with him. I’ve encountered kids Makai’s age who were scared to play with him because he would stim. They didn’t understand what stimming was and became afraid. 

[The word “stimming” refers to self-stimulating behaviors, usually involving repetitive movements or sounds. Everybody stims in some way. It’s not always clear to others. Stimming is part of the diagnostic criteria for autism.]

Inappropriate behavior: Saying, “He doesn’t look autistic.”

That bothers me! It’s also inappropriate for someone who doesn’t know much about autism to act like they do. I can see right through you! So can other autism parents. It’s not a fake it til you make it moment. Just keep it real!

Also, kids play a significant role, it’s not just the adults. Kids can be mean if they lack knowledge on autism. Makai can pick up their vibe and it affects him… and me! Teasing or bullying Makai or any child with autism is not just a NO-NO! It’s a HELL-NAH!!! I have caught kids at school teasing Makai and coercing him to fall on the ground because they know that Makai likes to imitate behavior. I pushed for more education on autism for parents so they can have open conversations with their children.

What’s the hardest part about having an autistic child? 

The hardest part is having to die, and leave Makai in such a cruel, cold world. I realize that there are many good people, however Makai will not always be surrounded by those kinds of people. I CAN’T DIE! (I’ll probably need help processing and coping with this at a later time. Sigh)

What’s your favorite thing about Makai? And what are his best qualities?

I LOVE everything about Makai. It’s hard to choose just one thing. Selfishly, I would say my favorite thing is that he independently hugs and kisses me. I mentioned before that he used to not be affectionate at all. Now, he always has his arms around me and kisses me all the time. He allows me to reciprocate as well. As a mom, those are the things that I cherish. 

Makai is just an amazing child. He is the hardest working person in our family. I am in awe of him on a daily basis. He does have an amazing memory and can memorize songs, books and dialogs— even in other languages that we don’t speak at home. He has super sonic hearing and vision. It’s crazy what he can hear from another room or see from across the room.

I would say that Makai’s best quality is that he is a healer. He heals our family. I can’t even explain it. He mends our broken hearts. Makai alleviates daily stress. He repairs our spirit. How does he do that, you may ask? I just look into his eyes and I feel it. I watch him play with his puppets, and I see it. When he sings, I hear it. It’s all healing. 

What do you guys do as a family that you absolutely enjoy? 

I absolutely enjoy when we all snuggle up in our bed, talk, laugh, tell stories, play games. We are enjoying being together. I look at all their faces and I feel the love. It’s priceless.

What have you learned about yourself throughout this journey? 

I learned that I’m not that same person I was ten years ago. I’m not the same mom or wife either. I am more than a mom. I am more than a wife. I truly believe that my evolution will still continue as Makai’s journey continues. I am still in search of myself and I find it exciting. Self-discovery is such a fascinating thing.

Lastly— a message to other moms who are still struggling with caring for their autistic child(ren)? 

Sometimes a long winded message isn’t always necessary. Just simple phrases such as these have comforted me throughout the years from other autism moms.

1. You are not alone. 
2. It will be okay. 
3. I’m here for you. 
4. How can I help you?
5. You got this.
6. You are an amazing mom.
7. You are doing the best you can.
8. It’s okay to not be okay.
9. Just breathe. Don’t forget to breathe.
10. Serenity Prayer: God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

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Grace also shares a story about how she finds teachable moments in hurtful situations, which you can read right here.