E's Story

When my son, E, was born, I never imagined we would have the journey we’ve had so far. I absolutely never imagined him being diagnosed with autism before the age of two. I never imagined him having to go to therapy multiple days of the week. His life, his story, has been so unexpected. And wonderful. He is wonderful. His mind works in different ways than his peers’, but it works in such incredible ways. This is E’s Story.

Disclaimer

This is my son’s story. This is our experience, his experience, with him receiving an autism diagnosis. I am not a medical professional or an expert in autism, I’m just a mom who has now experienced a lot alongside my son. You can read more information about this on our disclaimer page.

For more information about the signs of autism and diagnosing autism, here is a list from the National Autism Association. Always speak to your child’s pediatrician if you are concerned about their development.

This is E’s Story

As a Baby

E had his ups and downs as a baby. Overall, he was on track developmentally and we had no real concerns about his development. We had some struggles with him not gaining weight at times and we also had some sleep struggles – but they weren’t outside the realm of normal baby problems. I did start to struggle with postpartum depression when E was about two months old and sought help when he was about four months old. My husband, E’s father, also struggled with his mental health a bit during this time because it was just such a change for us. E is our only child and this was a new experience for both of us. But, overall nothing seemed different from other babies. Until we hit one year.

Stagnant at 12 Months Old

At one year, E was babbling, reaching to be picked up, walking, and seemed to be developing typically. He picked up four words – mama, dada, no, and book. But, over the next few months, we noticed that he kind of stopped developing at that point. He was still gaining some skills, but in terms of communication, he really didn’t gain any kind of skill. It was like a lot of his development just went stagnant. It wasn’t until he hit about 15 months old that we retrospectively noticed much change – and it was not the kind of change we wanted.

Regression

On top of his development just stopping, he actually regressed. He stopped saying the four words he had. He stopped babbling for the most part. By 18 months, he was essentially silent most of the day. He would grunt, he would scream, and he would giggle sometimes. But anything resembling words stopped. This concerned us, but we still didn’t really know what we were dealing with. We thought it was just a speech delay. I knew speech delays were common in kids and I thought that was the only thing he was falling behind in.

18-Month Check-Up

At his 1.5 year old well-baby appointment, we raised our concerns about his speech to his pediatrician. They were the first person to bring up the possibility of autism to us. We had never considered that our son could be autistic. This wasn’t a thought in our minds. It was at this appointment that we started realizing that this was more than a speech delay. E’s pediatrician gave us the information for Early Intervention, a referral to an audiologist to test his hearing, and a lot of questions and concerns. I am genuinely very thankful to that pediatrician for opening our eyes to just how much our son was starting to struggle. I think this one appointment was a very pivotal moment in E’s story.

Early Intervention

Early Intervention, or EI, evaluated E for services. During this process, I started researching about speech delays and found more information on autism and things started making sense. My husband and I were pretty sure at this point that E was autistic, but we didn’t really know where to go from here. EI evaluated him and we learned that he was delayed in almost every area of development. Before this we genuinely didn’t realize how delayed E was, and still is. We didn’t know what toddlers his age were expected to be doing and he just wasn’t doing those things.

At one point, we raised our concerns about autism to his EI therapist and while she (rightfully) did not give her opinion on the matter, she listened to our concerns and offered to help us get a referral to a developmental pediatrician. We accepted this offer and the referral was placed. Honestly, we were really lucky and this entire process only took a couple of months. We are a U.S. military family and we lived overseas at the time. There was a developmental pediatrician on base that was able to get us in within a few weeks.

Diagnosed at 21 Months Old

This is the wildest part of E’s story. The fact that he was diagnosed with a lifelong disability before the age of two. Now that I know more about autism, how it’s diagnosed, and how it presents in toddlers, it isn’t as wild to me. But at the time it seemed so out-there to diagnose a kid that young. But it makes sense. E was very clearly autistic. Though, I don’t think that we had the most “typical” evaluation process for our son.

We were asked to fill out probably a dozen questionnaires and forms about our son, his development, my pregnancy with him, and family history. We then scheduled an evaluation. I think it was technically scheduled for two hours, but in reality we were only there for an hour and a half. Within the first hour, E was diagnosed with “moderate” autism. The developmental pediatrician asked us questions, attempted to interact with him, and watched us interact with him. Both my husband and I had to be present. She said that he exhibited pretty much every characteristic she was looking for to make the diagnosis.

I think that most of the time when a child is evaluated for autism, there is usually some kind of standardized test or process the doctor does that helps them make the diagnosis. But we didn’t have that – and that’s perfectly okay. After she explained that she was diagnosing him and why, she left the room for about ten to fifteen minutes to give my husband and I some time to talk and come up with some questions. She went and gathered some other paperwork for us and when she came back we asked our questions.

Therapies

E had already started doing some therapy through EI. We were doing a program called the PLAY Project. I think it was the right choice for him at the time. The developmental pediatrician also suggested and put in referrals for ABA therapy, speech therapy, and occupational therapy. E wasn’t even two yet. We didn’t want to overwhelm him with therapies. I am not anti ABA or pro ABA. I am pro do-whatever-you-feel-is-right-for-YOUR-child. But while researching different therapies and talking things over with my husband, we felt that all these therapies would be too much for our son. So we ended up choosing to continue the PLAY Project, as well as start speech and occupational therapy.

I do not believe that autism is something that needs to be “treated.” Autistic children (and adults) should not be expected to act just like their neurotypical peers. But my son was becoming increasingly developmentally delayed and was really struggling with day-to-day functioning. So we work on his delays not “treating” his autism.

Being Around Other Children

Due to the pandemic, E didn’t spend a lot of time around other kids. I am a stay-at-home mom so E wasn’t in daycare. I tried to get us out and about as much as I possibly could, but living in Germany during the pandemic made that increasingly difficult. When E was about 2.5, we came back stateside to see family before moving on to our next base. In terms of E’s story and journey so far, I don’t actually think that being around kids would have helped him that much. It may have helped him a little bit but when he was that young he really didn’t have much interest in other kids.

Truthfully, I find it hard to be with E around other children his age. Especially neurotypical children who aren’t delayed in any way. It makes his delays and his differences just that much more noticeable. Which can be hard to see as a parent. But, when we went back to our hometown for a visit, E had the chance to spend some time around his cousins. And he loved this. He really doesn’t understand how interact with other kids but he loves to be around them. I knew during this visit that I needed to prioritize getting him around other kids now that he actually had interest in them.

Moving

As I said previously, when E was about 2.5 we left Germany. We ended up moving to Nebraska and are now living in Omaha. This was a bit of a hard transition for E. By the time we bought our new house, had our belongings from Europe, and were somewhat settled, E was absolutely fed up with traveling living out of suitcases. Sadly, moving meant we had to leave his incredible team of therapists. I will forever be thankful to his first therapists because not only did they help E, they showed my husband and I what good therapists look like.

New Therapies

Of course, we wanted to continue E’s therapies after we moved. We got set up with the local EI program and started receiving services through them. E wasn’t far from aging out of the EI program, but I also wanted to get him established with the school district in hopes of him receiving preschool services. In Nebraska, EI is ran by the local school districts so we were already working with the district he’d one day start school at.

Along with EI, we started ST and OT again. We actually tried one pediatric therapy center and it was a nightmare, so the search for a good fit continued. I prioritized looking for an OT that used DIRFloortime (or just Floortime) therapy methods. His previous OT in Germany was a Floortime trained therapist and she was a great fit, so I was hopeful we would find one. And we did! He has an incredible OT that he absolutely adores and has been a wonderful addition to his team. We did also eventually find a therapy clinic for speech and they’ve been incredibly helpful as well. On top of OT and speech, E started PT around the age of 4 to treat his low-tone and some gross motor delays.

Special Education Preschool

Due to his developmental delays and his autism diagnosis, E qualified for special education preschool in our school district. So, in August of 2022, he started preschool! This was a huge transition for him and we struggled a bit, but overall he loves it and has grown so much – especially now that he’s in his second year of preschool! We’re incredibly thankful for his teachers/therapists/paras, how much they care about him, and how much they’ve helped him grow.

How is E Now?

E is overall doing really well. He is only a couple months away from turning 5. He is still developmentally delayed and considered minimally verbal. The biggest change is that he now uses an AAC device to communicate and is doing phenomenally with that! He has the most incredible mind and has been teaching himself to read and write and do math. He is currently on a break from therapies for a couple of reasons – but when he starts back up again he will be in speech, OT, and PT again. He even starts kindergarten this fall!

E will be in a general education class with A LOT of supports, as outlined in his IEP. But we’re so excited to see how kindergarten goes for him and how much he continues to grow and learn. He does still have a lot of daily struggles, but we are constantly learning new ways to help him.

E’s Story Isn’t Over

Obviously, E’s story isn’t over. E’s story, his journey, will never be over because it’s something he’s going to experience for the rest of his life.

If you want to keep up with E, you can follow us on Instagram @esautismjourney.