Luciann + Mia: Diagnosis Journey

Written by: Luciann DePasquale

I knew I wanted to be a mom for as long as I could remember. When I found out that I

was pregnant with Mia, I was over the moon with excitement. I prepared for her arrival

identically to how I would for everything else in my life - extensive research. I spent months

scouring the internet for baby product reviews, picking the brains of every parent I knew,

reading all the top-rated baby books, and taking virtual classes through the local hospital where I planned to deliver. I am the oldest of five kids. I am surrounded by my nieces and nephews, and I spend lots of time with them. I have spent many hours babysitting for family and friends. I was good at it. I was so sure I was destined to be crushing this parenting thing, and it would all come so easily for me. Little did I know the next two years would have me questioning everything I thought I ever knew about children as well as my parenting abilities.

Why did it seem like doing normal, everyday things with my daughter was harder for me

than everyone else? Why does my daughter not want our attention like I’ve seen other children need their own parents? Why does she not want to interact with other people or answer to her name? Is her hand flapping normal for her age or should I be worried? I would go on to blame myself for a lot of these questions. It must be because I let her have too much screen time or because I’m a working mom. I made her routine too strict so that must be why she doesn’t like to leave the house. When I would voice my concerns to other people, including our pediatrician, I would hear that this is all normal. I’m overthinking it and kids all hit their milestones in their own time.

The milestone I continued to question that would eventually lead us to find answers was that Mia was almost two and was not walking yet. “She gets held too much. Why would she walk?” is one we heard often. Again, her pediatrician was not concerned and even after a trip to a pediatric physical therapist, we were told to do some exercises with her, and she would walk when she’s ready. A friend of ours recommended early intervention when the conversation of Mia’s walking delay came up yet again. I thought to myself, it couldn’t hurt to give it a shot and at least it would ease my mind when they tell me again that I shouldn’t be concerned.

After Mia’s Early Intervention evaluation at 18 months, we were even more confused.

We were left with a laundry list of all the things that were wrong with my baby and not walking yet was nowhere near the top of their concerns. Their recommendation was in-home therapy with many different therapists on different days each week. And it cost a small fortune. Mia was reading over a hundred flash cards since she was age one. Why does she need speech therapy if she can talk? We would come to learn so many different aspects of communication that we would have never had any idea about. We would also eventually learn that Mia has low muscle tone and hyper flexibility which was the cause of her needing support to walk. When the nervous system is not working properly, it impairs motor tone, which is why she had delays in early motor skills like lifting her head and walking. We were finally able to get Mia ankle braces to help with her walking around 2 years old, which she still wears today. Even at that point, we were still told by multiple doctors that this was common among toddlers and nothing to be concerned about.

After a year of countless appointments with doctors and therapists, we were still searching for a diagnosis. I felt like we were just going in circles. Looking back, I suspect that most of those therapists knew what Mia’s diagnosis would be but could not tell us due to protocol. I made hundreds of phone calls to try to get Mia seen by a pediatric developmental specialist which was recommended by every therapist she saw. The wait lists were years long

and on top of that none of them would even add us to those lists because they weren’t taking new patients. Again, I told my pediatrician my concerns and he finally recommended us to a pediatric neurologist “to ease my mind.” So, we waited 6 months for that appointment, at which point Mia was two and a half. After a three-minute evaluation, we were told “Sorry, your daughter has Autism, and it is not mild.” He then continued to tell us that her mannerisms may seem cute now, but they would not always, so it was important to start therapy soon. I remember needing to sit down to concentrate on swallowing the lump in my throat so I could stop myself from crying. I couldn’t wait for the neurologist to stop talking so I could get to my car to cry. We were given a list of ABA schools and the Autism Speaks website and sent on our way.

I left that office sad and afraid of what our future was going to be like. It was now

confirmed that my daughter is different, and we know that this world is not always kind to

those that are. I gave myself a week to sit in my sadness, then I picked myself up and decided to never go back there because that wasn’t going to help Mia. As much as getting an Autism diagnosis scared us, it also made us feel relieved that we finally had an answer and could move forward. Now we can get her whatever support she needs and understand our daughter in a way that wasn’t possible before. We are beyond blessed to have a family friend who was able to provide us with helpful information on what the next steps for Mia looked like. Without her help, it would have been very difficult to navigate this process and understand what our options were.

Mia started ABA school about a year ago at two years and 8 months old and is

absolutely thriving there. She gets Speech Therapy, Occupational Therapy, and Physical Therapy during school hours and walks into school with a big smile on her face every day. She is starting to put together sentences to communicate and loves to interact with her friends and family. A year ago, we were unable to go to a birthday party or an unfamiliar place. With the help of ABA for Mia and parent training for us, we now have the tools to help Mia be able to navigate these situations so that she can enjoy herself and communicate to us when she is done. I no longer question my motherly instinct or my abilities as a parent. I know that I will stop at nothing to get my daughter whatever support she needs in life and my only concern is her happiness.

I truly believe that Mia was put in my life because God knew that I was fully capable to advocate for the best life possible for her and to teach me many valuable life lessons. I have found so much joy by taking a step back and letting my daughter lead me into the way she needs to be supported and loved. I have lived my life for so long trying to control everything around me. Now, I finally understand that the unknown is nothing to be afraid of and the present is where we need to be. I have also discovered by going through this journey that the system is very broken for our children and parents. There is so much opportunity for us to help fix it and give back to other families who are now in the same shoes we were once in. When we first received Mia’s Autism diagnosis, I was so angry that no one helped us until I screamed or begged. I know now that holding onto that anger isn’t beneficial for anyone, especially to my daughter. I now look forward to turning that anger into motivation to give back to the special needs community.

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