From Awakening to Celebration — Finding Beauty in Our Experiences with Autism 

eLumanated: From Awakening to Celebration 

eLumanated showcases parents and professionals in their awakening and efforts to elevate the lives of students with disabilities. As a progressive therapy provider, we recognize that no two students are the same and that there are many different approaches to the same diagnosis. Join us to check out different perspectives and experiences related to raising exceptional children, organizations that facilitate their success, and insights into effective interventions.

This week, Jacquie Mahan, CEO and co-founder of The Awesome Company, shares her story of coming to terms with her son’s autism diagnosis and helping him flourish. We invite you to check out The Awesome Company to learn more about this truly awesome organization that helps people celebrate the everyday and milestones in life.

From Awakening to Celebration — Finding Beauty in Our Experiences with Autism 
by Jacquie Mahan

My son, Lincoln, was officially diagnosed with autism spectrum disorder when he was 22 months old. I had known in my heart that he had autism for a long time. Late-night searches about hand flapping, gut issues, repetitive behavior, screaming, isolation, delayed speech, tantrums, and no eye contact gave me the answer that I wasn’t quite ready to accept. Autism was a scary word to me. With an already-strained and often-volatile marriage to deal with, I couldn’t possibly take on one more thing. No, thank you.

Feeling overwhelmed, I tried to dodge and hide from the diagnosis for a little while longer. I remember a pediatrician telling me Lincoln had “second-child syndrome” with a nervous giggle. What he was trying to say was I wasn’t complimenting Lincoln enough, and I was only giving him attention when he was doing something wrong. The doctor said Lincoln was competing with his older brother, Donovan, for my attention, and that’s why his behavior was so bizarre. Boy, was he wrong. And also, what a strange thing to tell an insecure mother desperately looking for answers, but moving on. His response humored me more than offended me. I thought to myself, “This quack doesn’t know what he’s talking about. Doesn’t he know Lincoln has autism? I mean, he has all the signs. Come on, doc. Say it.”

Painful Reality

Well, there was my answer. I was looking for someone else to give me permission to say it out loud. But really, I just needed to give myself permission. My son has autism. There, I said it. My son is going to have special needs. I am going to have to say to people that I have a special needs child. I’ll probably mess him up. I’ll probably mess up my other kid too. I’m scared. I feel alone. My marriage sucks. I don’t know what to do. Who’s going to help me?

I took my hand-flapping baby home that night and took a good look at him. He was pretty happy, but I knew he could be happier. He was different — that was for sure — but what was more pressing that night was that he was constipated. I remember that vividly. Really, really constipated. He was crying, and he was uncomfortable. I knew he needed help. His gut was a disaster, he was having small seizures, and he was delayed across the board.

Lincoln finally fell asleep and kissed Donovan good night. I walked to my bed with my head hanging low and was emotionally and physically exhausted. Fully depleted, I spent that night crying alone and feeling sorry for myself. It felt good to let it all out. So often I was trying to hold it all together.

My Awakening

The next day I woke up ready. All the self-pity I was wallowing in wasn’t about Lincoln at all. It was all about me. I loved when things were all about me, but I needed to make it about him now, and I did. I dropped the bag of drama and got to work. Lincoln was diagnosed by professionals (and not by the sweet yet autism-clueless pediatrician from before) almost immediately. Any issues I was having could wait indefinitely because my baby needed my help. I was ready. And I was going to make sure my older son thrived during this transition too. We were going to get through this together.

Once I spoke openly about Lincoln’s diagnosis, I soon had a tribe of wonderful people helping him. One wonderful person would lead to another wonderful person. I felt so supported. I was not alone. Lincoln had a team of people ready to help him. Lincoln had the best speech therapists, music therapists, occupational therapists, peer play groups, aides, and medical treatment available. The fog was slowly clearing up. He was in 25 hours of early intervention a week.

I found a nanny that had been a special needs educator in Romania. She moved in with us. Every day was hard, but slowly it got better and better. My marriage ended, which was both sad and a relief. I was now a single mom and the sole provider for two small boys. I was on a recovery journey and I wasn’t going to stop. Even though I wasn’t sure where I was going, I figured I’d know once I got there.

Finding Help

I’ve been asked this question a lot: How did I pay for all this treatment? Well, when I first told my dad that Lincoln had autism spectrum disorder and he needed a lot of medical help, he told me to give Lincoln everything and anything he needed no matter what it cost. He said, “This is why we have this money, to take care of each other.” Never had I felt more blessed to have money in the bank. Never was I more appreciative of the hard work my parents put in so that I could have an easier life.

You see, autism wasn’t covered by insurance yet. Especially for a 22-month-old. Everything was going to have to be paid out of pocket. It’s common knowledge in the autism world that families go into debt and even bankruptcy trying to help their kids on the spectrum. Lincoln is so fortunate to have a grandpa that covered all his bills. If you’re reading this, thanks Pops. Without the financial cushion of support, a lot of kids fall between the cracks. Lincoln is very fortunate. He knows it too, and so do I.

Reasons for Hope

After 6 months of intense therapy and treatment, Lincoln looked at me and pointed to my bare feet and said the word “shoes.” I cried so hard because he had never told me to do anything before. For the first time in his life, he told me what he wanted. He wanted me to put on my shoes. This was a pivotal moment in his recovery. He was pushing through; the therapies and hours of early intervention were working.

Lincoln was happier, he could smile, and he could show his family affection. He stopped having seizures, started to sleep soundly, and ate more than just bananas. For the first time, my son could speak in sentences, he willingly interacted with new people and he made his first friend. He enrolled in a typical school with an aide and even sat for a school picture. It had all started to come together. There were a lot of tears and tantrums, but soon the tears were farther and farther apart.

Autism was now a normal thing in our family. Moreover, it wasn’t scary anymore. I want to yell from the roof tops so every future autism parent can hear me, “Early intervention works! Don’t give up or look the other way. Stay focused and keep going. Find a way to get your kid in therapy as soon as you can. Get the autism grant from your state. There is money waiting for you! Start right now!”

The Celebration

Flash forward to now. Lincoln just celebrated his 8th birthday with 20 of his best buddies from school. Nothing is better than watching him run around with a smile on his face and a pack of friends skipping behind him. He attends the same school as his older brother and he no longer requires an aid or helper of any kind in class. Lincoln also sees his speech therapist and occupational therapist weekly.

He still struggles with repetition, transition and understanding emotions, but to me, he is an autism success story. Thanks to early intervention, he desperately needed and that redirected his whole life. Lincoln is super smart. He is hilarious, healthy and a chatterbox. His friends that accept him, arm flapping and all. He loves to learn new things. Most importantly, he is happy, which is what I have wanted for him all along.

Donuts

To conclude, I want to share my favorite autism moment with you. Last year, Lincoln and I were driving in the car and he told me he knew he had autism and we could talk about it now if I wanted to. I wasn’t expecting to hear that from him. I said, “Well, ok. What do you think having autism means?”

See, we had always told him he had autism, but he never would engage in a conversation about it, so I never pushed it. I figured when he was much older, we could sit down and talk it out. I was shocked that he brought it up so casually and so soon. To answer my question, Lincoln said frankly, “Autism means my brain is different than other peoples’ brains. Some things are easy and some things are harder for me. But I like being different, Mom, so I’m glad I have autism. Can we get donuts?”

That moment was the best because I love donuts. The end. Just kidding. It was the best because my son not only accepted who he was but he was celebrating it. He likes that he has autism. Wow.  He likes that he’s different. Double wow. As a mother, nothing feels better than knowing your kid is going to be ok. Driving home that night, I knew Lincoln was going to accomplish great things in his life, and I didn’t need to worry so much. And we got donuts.