‘I don’t see any red flags.’ He began screaming and running into walls. There was an 8-month waitlist. I wanted answers.’: Mom fights for son’s autism diagnosis, ‘My strength comes from him’

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“For as long as I can remember, I’ve wanted to be a mom. My husband and I knew we wanted a family and quickly started ours — I got pregnant a month after our wedding. We were thrilled! I dreamed of meeting my baby throughout my entire pregnancy and of the amazing life we’d have together. We didn’t know if we were having a girl or a boy, but on December 12, 2012, our sweet boy, Logan Daniel, was born. He was absolutely perfect. I remember looking at him for the first time and just feeling this profound sense of peace. He was meant to be mine. I was meant to be his mom. I was overjoyed.

Courtesy of Megan

Those first few months were honestly amazing. Logan was a dream baby! He was so happy. He never cried and was sleeping through the night by a month old. We definitely hit the jackpot when it comes to newborns! The days kept passing on and my love for Logan continued to grow and grow. Each day I woke up to him felt like Christmas morning. I know that sounds cheesy but it’s true! He filled my heart in a way I never knew was possible. My love for him was and is endless.

Courtesy of Megan

As time went on, especially after Logan’s first birthday, I began to worry. My sweet boy seemed to have some delays, mainly his speech. He had a few words but he didn’t use them consistently and he wasn’t adding to his vocabulary. I had several friends with kids around the same age as Logan and seeing them together was eye-opening. (I know you’re not supposed to compare, but…) Logan was just not in the same place developmentally. This was hard to admit, even to myself. I brought up my concerns to his pediatrician and though she was supportive, she felt Logan was totally ‘fine’ and he’d catch up. I tried to push my worries aside, but I just knew he needed a little extra help.

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At 18 months, I pushed to have him evaluated by early intervention. His doctor still felt he was okay and didn’t see any ‘major red flags’ but she agreed we could have him evaluated. After his evaluation, we learned his speech delay was on the mild side for his age, but he did qualify for services. We started doing speech and occupational therapy in our home two days a week. Therapy was definitely helpful but it was a slooooow process. As the months went on, his therapists continued to be happy with his progress but I just couldn’t shake the feeling we were dealing with something else. Something bigger.

Courtesy of Megan
Courtesy of Megan

When Logan turned three, he aged out of early intervention and began going to preschool through our school district where he also received speech and OT. The first week was definitely hard on both of us (lots of tears!) but Logan quickly began to love school. He was so happy there and really seemed to enjoy it.

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Around this time, I had also given birth to our daughter. This was a verrrrrry tough time for us. Liliana was colicky and she would scream for hours on end. She also never slept. She was basically the exact opposite of how Logan was as a baby! It was HARD. I felt so guilty because she was very high maintenance and needy and I worried about Logan. He did okay with the new baby, but I noticed some new behaviors that were concerning. Logan began running, crashing into walls, and screaming LOUDLY. It was a happy scream, but it was so loud and constant. He also seemed completely disinterested in being a big brother. He really paid no attention to his new sister. These behaviors, combined with his still lagging speech, made me more concerned than ever.

Courtesy of Megan
Courtesy of Megan

At the end of that school year, I went to Logan’s parent-teacher conference. His teacher had mostly great things to say about him, such as he was always happy and cooperative at school. However, his speech therapist was also there and he had concerns. He started asking me questions about Logan at home and about his overall development. The questions felt probing and something about his tone made me uncomfortable. I felt defensive. He then said to me, ‘Has anyone ever told you Logan might have autism?’ My heart sank. And broke. That word. Autism. For many months, I had thought maybe that’s what we were dealing with, but I’d never said it out loud. Hearing him say that was like someone calling me out on my deepest, darkest secret and my WORST fear.

I left that meeting and just sobbed. I was a MESS. (Being two months postpartum definitely didn’t help!) I called my husband and told him what the speech therapist had said. He was mostly quiet on the phone but later that night, we talked and Manny told me he had been thinking the same thing. The crazy part is we were both thinking this but neither of us had said it to each other. We felt the other didn’t know and we knew how devastating that would be. Once it was all out there, it actually felt like a weight lifted. We were on the same page and all either of us wanted was to help our son.

Courtesy of Megan

At this point, we knew we wanted to do a full neurological evaluation to get a diagnosis, but the question was when. I had gotten a lot of conflicting advice about when would be the best time to do the evaluation. Most people (therapists, teachers, doctors) felt it was better to wait until he was closer to kindergarten. Manny and I knew we didn’t want to wait that long to get answers, so I went ahead and got a referral from his doctor to see a specialist. Little did I know, that specialist had an 8-month waitlist! I tried calling other child psychologists and doctors, but it turned out not many worked with kids as young as Logan. It seemed crazy to me and still does — wouldn’t diagnosing early be better? I do think the field is shifting and there are more specialists seeing younger kids but four years ago, this was the standard, at least in our area. We were told most specialists wouldn’t see a child until they were age 6, hence the very long waitlist for the ones that would!

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After a long, exhaustive wait, we finally had our appointment scheduled for March 2017. I can’t even explain the prep that went into this appointment. Stacks and stacks of paperwork. Most parents need to fill out forms and paperwork for their children from time to time, but if your child has special needs, this basically becomes a part-time job! Finally, after many agonizing months, we made it to the day of his evaluation. After several hours of him being seen by four different therapists and doctors, the specialist came in to deliver the diagnosis: Autism Spectrum Disorder.

Autism. There it was in black and white. There was no denying it or going back now. I felt the tears pour out of my eyes. The doctor delivered the news kindly but it still stung like I can’t even explain. My baby. My sweet boy, who is PERFECT in my eyes, had autism. I feel differently about it now, but at the time it was soul-crushing. We were devastated. Manny and I got in our car and just cried. As much as we were expecting to hear this news, it was still so hard to process. I just remember saying, ‘Why Logan? Why us?’

I wanted answers I knew I’d never get.

Courtesy of Megan

The rest of that day was a blur. Many, many tears were shed. I went to bed that night with swollen eyes. I prayed for God to give me the strength to get through this so I could help my son. The next day, I woke up and decided I was going to move forward. I was still sad but I pushed it aside and began looking into the therapy recommended by the specialist. ABA (applied behavior analysis) therapy is most commonly recommended for autism. In the past, I was hesitant about ABA because I knew how intensive it could be, and other moms had told me it was too much for their kids. But at this point, I was all in. If it was going to help Logan, then I had to at least try.

Courtesy of Megan

Once again, I was going through mountains of paperwork and meetings to get everything set up. It took months to get things going. This was a difficult time for me because all I wanted to do was move forward. Waiting for therapy to start just felt like we were standing still. It was also during the summer and Logan was out of school. All moms know how long summer can feel but when your child has special needs and they are out of the routine that school brings, it can feel overwhelming. I was doing my best just to get through each day. That was really all I could do.

Finally, I got the call Logan’s therapy team was all in place and we were ready to get started! To say I was relieved is an understatement. I just couldn’t wait to get the ball rolling. Shortly after, Logan started therapy at home for 3 hours a day, 6 days a week. Obviously this is a lot of therapy, but that’s the whole idea with ABA: to immerse the child in therapy so they can reach their full potential. I was nervous to have him doing so much, especially since he was already in school five mornings a week, but I quickly saw he was bonding with his therapists and just how beneficial this process would be.

Courtesy of Megan

Right away, I could see the benefits of ABA. It started slowly, but for a parent like me, even the slowest progress felt amazing and was a huge celebration! One of the things we worked on initially (and still do in a different capacity) was following one or two-step directions. At this point, Logan was 4. But in many ways, he was not as capable as a typical 4-year-old. I was still doing basically everything for him. I’ll never forget the day I asked him to take off his shoes and put them away and he ACTUALLY DID IT. All by himself! That may not sound like much but for him, it was MAJOR progress. Though there have still been challenges, we have continued to see more progress consistently from him.

In the middle of all this, our family welcomed our last baby. Laila was born in April 2018. I was honestly pretty terrified of how I’d handle life with three kids… especially having one with special needs! But somehow we were given exactly what we needed. Laila is truly an angel. Amazingly, Logan showed us a completely new side after she was born. He LOVED her. He seemed to enjoy his role as big brother. He was engaged and participating in our family. It was honestly incredible to witness.

Courtesy of Megan

He also started kindergarten that fall. After an exhausting process of touring schools to find the right fit for Logan, we finally settled on a public school co-op program with our home school district and neighboring districts, as well. The class is blended grades, Kindergarten through second, so Logan is still in that same class. It is small and well-staffed and they follow a curriculum specifically designed for autism. It was definitely an adjustment starting at a new environment (and especially because it’s a full day). I missed him SO much! Even with new people and expectations, Logan did amazing. For the first time ever, he met all of his benchmarks for his IEP!

Courtesy of Megan

Because of school and ABA therapy (and two parents who will NEVER give up!), Logan is doing amazing. He has progressed in so many ways. While he is still nonverbal, he has several words he can say and uses an AAC (assistive augmentative communication) device. Learning to use the device has been a journey for all of us, but it’s paying off in spades. A few months back, Logan seemed to not be himself at school. No one could tell exactly what was wrong, but then Logan used his device to say, ‘I sick.’ This was the first time in his entire life he’d been able to communicate he wasn’t feeling well — or any feeling at all. Can you imagine? I wept with joy that day.

Logan is also potty trained. He can dress himself. He’s learning to shower on his own. He can take off his own shoes and coat when getting home from school. He can hang up his backpack. He can go on the swings and pump his legs, he doesn’t need a push. These things might seem menial to some but to us, they are EVERYTHING. I couldn’t be more proud of his progress.

Courtesy of Megan

This past year has obviously been different since COVID-19 hit. I think everyone has been reeling from the effects (and our family possibly even more so because in May, we all got sick with Coronavirus). Families like mine, with special needs kiddos, have had their own set of challenges. As I said before, a routine is very very important to Logan and many other individuals on the spectrum. They THRIVE on that routine. Without it, things tend to fall apart. We have definitely struggled throughout this time with quarantine, lack of schedule, and worst of all, regression. Kids like Logan work SO HARD for every new skill. Without regular school and therapy, those skills can often time disappear. Seeing him regress is heartbreaking.

We are just now getting back to ABA after 3 months off. Logan is doing great and he is so happy to have his routine back. Things look a bit different but that’s okay. We were just ready to dive back in! I’m hoping in time he will make up for his regression. He’s proven to me time and time again I cannot underestimate him. Logan is a fighter!

Courtesy of Megan

Throughout this journey, there have been many tough times, times where I have questioned if I’m really capable of handling all this. I think it’s important to say there is a grieving process involved. When you have a baby, no one ever dreams they will end up dealing with this stuff. Then suddenly, you’re thrown into it and it’s like being asked to swim with lead feet. It is overwhelming and daunting. I am an extremely sensitive person and my heart breaks on a daily basis when I read a sad article or see something sad on TV. I am by no means an emotionally strong individual! What I’ve learned through all this is I am stronger then I think. Because I have to be. And that strength comes from Logan. His smile carries me forward. His infectious laughter moves me when I cannot move myself. I am blessed beyond words to be his mom. It’s amazing how deeply you can feel love even with no words at all.

While this journey is ongoing, I am still so proud of how far we have come. Proud of Logan for working so hard every day and still having a smile on his face. Proud of myself for learning to fight and advocate for my son. Proud of my husband for being the best daddy out there and for being so amazing with Logan every single day. I’m proud of our family for coming together and fighting this fight together instead of letting it bring us down. This journey can be lonely. I’m constantly listening to other moms’ conversations about their child’s achievements, whether it be sports or school. In my head, I’m thinking, ‘Well, Logan used a fork tonight while eating dinner so that’s a win in my book.’ There are times when it seems so unfair he has to struggle with things that come so easily for other children, but getting caught up in that is a losing battle. I have to remind myself in those times Logan WILL get there. It’s just going to take a little longer and that’s okay.

Courtesy of Megan

In September 2018, I started my podcast Adventures in Autism. I love listening to podcasts and at that time, I couldn’t find many with autism as the main topic. I wanted to hear from other parents like me, who were going through similar situations. Once I finally got up the nerve, I recorded that first episode and haven’t looked back. Most of my guests are fellow autism parents, but I also speak with experts in the field, therapists, siblings, and individuals on the spectrum themselves. The podcast has been a true passion project for me and I absolutely love it. We are nearing 100 episodes, which is just wild!

To any family going through the same struggles, you are not alone. I know it can feel that way at times and that is is why I feel so strongly we should all share our story. Something I hear a lot from people is, ‘You’re so strong, I couldn’t do what you do.’ The truth is, you could. It is hard, don’t get me wrong but at the same time, this is all I know. This is our version of normal. And you know what? It’s not so bad! We have hard days but we have GREAT days too. We live a very full life and autism just happens to be a part of it. Autism is being diagnosed more and more. Raising awareness AND acceptance is so important to me. I will continue to fight for Logan every day of my life. The journey is long and it’s hard, but he is worth every second of it.”

Courtesy of Megan

This story was submitted to Love What Matters by Megan from Adventures in Autism. You can follow their journey on Instagram and on their podcast. 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.

Read more touching stories about autism here:

‘I don’t know his favorite color. He can’t tell me. I’ve grieved. Imagine not being able to communicate?’: Autism mom describes highs and lows of parenting, ‘He makes me a better me’

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

‘I fell in love at 17 and had two boys. Then the doctor said, ‘We believe Cale has autism, and I suspect your youngest does too.’: Teen mom births 2 non-verbal, autistic sons, ‘Love needs no words’

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