‘I know you like to worry, but she’s just fine.’ I was labeled a ‘helicopter mom.’ I felt defeated.’: Mom fights for daughter’s autism diagnosis, ‘I never ignored my gut again’

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“There are some things in life I have just always known. I knew I wanted to be a wife, and even more, I knew I wanted to be a mom. It all started at a party in 2008 when I was 18 years old and my husband, Avery, was 17 years old. I was invited to the party by a mutual friend. It was a little awkward because everyone there knew each other except for me. Avery did not make me feel like an outsider, though. I always tell people, ‘If you ever meet Avery, there is no way you cannot love him.’ He is kind, intelligent, funny, and I thought he was cute. For some reason I could not tell him, though. You remember what it was like being a teen. The sheer idea of being rejected in front of everyone we knew was enough for me to repress those feelings for years… and he did, too.

Over the next 2 years, I would continually try to match Avery with other girls. I know this sounds strange, so let me explain. I always knew he was a great guy. Any girl would have been lucky to date him, so if it could not be me, I wanted it to be someone nice. At one point, we even went on a double date with other people. None of those dates ever seemed to work out. In year three, though, I started to notice some signs he might be interested in me. When we would all hang out as a group, he would stay back to walk with me. And when everyone would be talking at once and loudly, we would be in a corner talking to each other about life and our dreams.

Courtesy of Davon Simmons

I could not hide any longer how I felt, and neither could he. One night, as a group of us walked around downtown Detroit, I spotted a cart with stuffed animals on it. When we all walked past the stand, I pointed at the stuffed bear and mentioned how I wish I had one. A few moments later, I noticed Avery was jogging to catch up with us. He handed me the bear he had snuck away to buy and said, ‘You really wanted this, and I think you deserve to have everything in life that you want.’ My heart went crazy and I felt butterflies in my stomach. Even though I wanted to tell him how I felt, I could not. I was getting ready to go to Orlando for 6 months for an internship. All I could do is hope he was still interested when I came home.

In February of 2011, I was back home in Detroit and preparing for a move. As I was packing, I got a text from Avery asking if I needed any help. From that moment on, we talked every single day. One conversation stands out to me the most. ‘Where do you see yourself in 5 years?’ he asked. I answered like most young adults my age probably would, ‘I don’t know, but I hope to be further in my career.’ I asked him the same and without hesitation he responded, ‘I’ll be married to you, we’ll be doing well for ourselves, and have at least one baby by then.’ My mouth dropped. I wanted the same, but was too afraid to say it. I told him I had Polycystic Ovary Syndrome and it probably would not be easy to have a baby. He said we could always try fertility treatments or adoption. I knew then he was the one.

Once we started dating, Avery and I moved fast. In September of 2012, we got our first apartment together. In October of the same year, we got engaged and were married by December. We did not want the big wedding and all the guests. We just wanted to say ‘I do’ in front of our parents and God. That was enough for us. It was not always easy being married so young (21 and 22 years old), but it always felt right. This is why we knew we wanted to start trying right away to have a baby. Unfortunately, it took almost 5 years for us to conceive.

Right before I got pregnant, a vision came to me and showed me I was going to get pregnant that cycle, and it was going to be a little girl we would name Ariana, and she would be born in February. There has never been a vision of my future God has given me that has not come true.

Courtesy of Davon Simmons

I did get pregnant that month, the baby was a girl, and even though my due date was in March, she came a few weeks earlier and was born in February. We even have a picture we took the day we brought her home from the hospital that looks just like the picture God showed me in my dreams. Ariana was the most beautiful baby, and I was in love. Avery was able to take a couple weeks off from work and everything was perfect. My dream was finally my reality… or so I thought.

Courtesy of Davon Simmons

From birth to 11 months, Ariana was fully on track with her developmental milestones. Some of them she flew by way earlier than expected. But a month before her first birthday, I started to notice she was no longer progressing at the same rate developmentally. I knew something was different, but I did not feel confident at the time to say anything to anyone else. Often as a first-time mom, you are labeled as overly emotional and made to feel like a ‘helicopter mom.’ I knew if I wanted to be believed by her pediatrician (and even my family), I needed proof. I began to record and take pictures of everything.

Courtesy of Davon Simmons

Avery has always been an amazingly supportive partner, so I was not afraid to tell him. He trusted my judgment as a mother and decided he would follow my lead. My first step was mentioning it to her pediatrician. ‘I have noticed some signs that Ariana is regressing, and I think she may have autism,’ I told her. She looked at me with a smirk and said, ‘Mom, I know you like to worry but trust me, she is just fine.’ Who likes to worry? I was not choosing to feel this way. I went to school for early childhood education, I saw the early signs they tell you to look out for. For some reason, my educational background did not matter to her and neither did my word as Ariana’s mother.

At Ariana’s 12-month visit, I showed her pediatrician videos of her headbanging, having meltdowns, and not answering her name. I just knew it would be enough to get her to at least refer us to a developmental pediatrician. Instead, she decided she would put off giving Ariana any of her shots so she could see how she progressed. I went home still feeling defeated. All I wanted was to get Ariana services so we could stop her from regressing and possibly get back what she already lost. During the car ride over, I told my husband, ‘I don’t care whether they call it autism or they call it any other name in the book. I am not going to stop until she gets the services she needs.’ He reached over to grab my hand and gave it a gentle squeeze in agreeance.

During one of our many follow-up appointments with her doctor, Ariana began to get upset we had been in the office for so long. As she started to cry, Avery and I began to count to ten to calm her down and she was so surprised it worked. We tried to tell her before Ariana’s special interest was numbers. She could identify up to 45 and she was only 12 months old. As the counting started to calm her down more, she started banging her head on the hardwood floor, which she often did to soothe herself. The doctor finally looked at us and said, ‘That should hurt her and the fact she isn’t crying or wanting to be held is concerning to me.’ We finally left there with a referral for an evaluation.

Courtesy of Davon Simmons

I would love to tell you after this everything became easier, but it did not. Ariana unfortunately had to sit through three evaluations. The first one was recommended by her neurologist. This guy did not even try to evaluate her. He called us into his office and asked us a few questions and then 15 minutes later said, ‘She does not have autism. She makes eye contact and she waved at me when I said hi to her.’ I tried explaining to him autism presents differently in girls than it does in boys and he needed to do a complete clinical evaluation to determine if she has it or not. That conversation ended when he told us we were just overwhelmed and suggested parenting classes.

Lucky for us, I had a feeling the fight was not over, so I put Ariana’s name on multiple waiting lists for evaluations. The second evaluation was a great experience. The psychiatrist was amazing with Ariana and before we left, she confirmed it was going to be her recommendation for Ariana to get speech and occupation therapy. I looked further down the paperwork and I noticed she also recommended ABA therapy. ‘I don’t know why, but I’m not comfortable with the idea of ABA therapy,’ I told her. She looked at me with a concerned look and said, ‘If you want her to be able to be like everyone else, she is going to need this special therapy to teach her how.’ Somehow, I knew this was not true and I also knew I did not want her to ‘be like everyone else.’

Courtesy of Davon Simmons

As I began to sign her up for speech therapy and occupational therapy, I found out she needed to be evaluated again. Our insurance at the time only accepted an autism diagnosis from certain providers for an Autistic person to get unlimited sessions of therapy. I felt so bad. At 1 year old, I was going to have to put Ariana through this another time. It was hard on her, but she did her best. Just like the previous diagnosis, this doctor also tried to pressure me into ABA therapy. They gave us a tour and let us sit in on sessions. However, it still did not feel right for our family.

I felt strongly speech and occupational therapy were going to be the key for Ariana. I never wanted to change her. From the beginning, I wanted to help her learn how to care for herself and to give her the words (whether verbally, through signs, or devices) to be able to advocate for herself one day. This is why I felt devastated when a speech therapist told me working Ariana was too difficult and she could not help her anymore without her getting ABA therapy first. The car ride home felt like the longest on Earth. It was never hard for me to hear someone say, ‘Your child has autism,’ but it broke my heart to hear someone say my child is too difficult to help. Looking back at our experience, I feel like we were pressured and manipulated into ABA therapy before anyone even knew the extent of her needs.

Courtesy of Davon Simmons

We tried ABA for 6 months to see if it helped anything. After a few months of receiving services in the clinic, I noticed Ariana’s anxiety went up. She started biting her nails until they bled and was losing her appetite. I decided to change her schedule to less hours and to in-home sessions. This is when I saw it for myself. She was miserable! Even though ABA was a game-changer for some people, it made matters worse for her. I could not ignore the fact my gut told me this was not for us. Now I was seeing the look on my daughter’s face and the tears in her eyes. ‘Today will be her last day,’ I said as her tech was walking out the door. I also called the therapist who told me she was too difficult to help and told her she would not be coming back to her, either. I never ignored my mom-gut ever again.

Ariana is doing so well now. She is in preschool and is kicking butt in speech and occupational therapy. I finally feel like we have found our winning team. Her teachers and therapists coordinate goals and this has led to her accomplishing them one-by-one. That is why I always tell people none of us are the hero in this story. We are all a team and Ariana is at the head of it. I currently have the platform to share our story. One day, whether verbal or nonverbal, she will be able to advocate for herself and her community. Somewhere in the crowd, I will be there cheering her on. My motherhood journey so far was nothing like I thought it would be, but this is what makes it so beautiful.”

Courtesy of Davon Simmons

This story was submitted to Love What Matters by Davon Simmons of Westland, MI. You can follow their journey on Instagram and TikTok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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