Autism doesn't mean less, it means different

Autism doesn't mean less, it means different

As a freshman in college, she was one of my first friends. We were both ambitious young women, hungry to experience all that our new lives had to offer. We cheered the loudest for teams that no one else cared about, and immersed ourselves in activities and challenging student leadership roles.  Little did we know, that this was just God’s way of preparing us for cheering on our own children and developing the strength of character that we would desperately need as mothers.

Luchana Proccacio Imbrogno is a wife and mother of 2 girls. Her life took an unexpected turn when she realized that her daughter experienced the world differently than others. In life, we aren’t defined by our challenges but how we rise to meet them. Luchana is an Amazing Mom who is rising above the unexpected hurdles of her motherhood journey. I’m proud to call her my friend and honored to feature her on ispeakmom.com.

On life, love and family:

“Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed” - Linda Wooten. I love this quote. It resonates with me on a daily basis and is something I believe any mother can relate to.

Before I became a stay-at-home mom, I was the Coordinator of First Year Programs at Elgin Community College. I would help incoming students transition to college and I loved every minute of it. I was part of an amazing team and community, and felt I was making a difference in the lives of students. I worked very hard while focusing on my goal of becoming a Dean of Students one day. These goals and expectations changed when my second daughter was born and my first daughter was diagnosed with autism. During that difficult time, I was overcome with uncertainty and fear that I had never experienced nor expected. I had always felt confident about motherhood as I was raised by dynamic parents who dedicated everything to their kids, while making it look easy.

When Evangeline arrived on September 2, 2011, we were overwhelmed with joy. She was perfect from head to toe and we were instantly in love with her. Like most parents, we started making plans for her future and all the unforgettable experiences we would share together. Experiences like going on family vacations, playing sports, sleepovers with friends, play dates, the first day of school, and the endless conversations, funny jokes, and shared stories. Although Eva always did things her own way, it wasn’t until her 2nd birthday that we noticed she was different than most. Evangeline wasn’t speaking in two-word sentences, wouldn’t follow simple directions, was easily overwhelmed by sounds and crowds, and wouldn’t enter stores, restaurants, and even the homes of close family members without having a meltdown. She had very little eye contact, couldn’t do simple everyday things like answer to her name, or sit calmly in a car seat. Eva was officially diagnosed with Autism Spectrum Disorder a few weeks before her 3rd birthday. I will never forget that day - one of the worst days of my life. I honestly don’t remember much of what the doctor said after the initial diagnosis as I was heartbroken. For months following Eva’s diagnosis, my husband, Eddie, and I went through a period that felt like grieving, which may be difficult for some people to comprehend. Although nothing physically changed, and our daughter who we loved so much was still there, we “grieved” the loss of the child we thought we were going to have, along with so many different hopes and dreams for her future.

While the diagnosis seemed to drape our lives with darkness, we were blessed with a beacon of joy when our second daughter, Victoria, was born shortly thereafter. My role as a mother changed yet again as I wondered how to balance being a mom to a girl with special needs and a neuro-typical (like-most) child. Victoria has given us a completely different parenting experience. We were amazed at how quickly and naturally she learned things and how independent she became. Filled with confidence and strength, she blossomed into a fierce and incredibly smart little girl, supremely aware of the world around her. She is extremely protective of Eva, which is a trait we pray continues to grow. Victoria was the missing piece to complete our little family and she and Eva are the lights of our lives.

With newfound energy and purpose, Eddie and I took on Eva’s challenges head on. We researched numerous therapies and theories, read every book available to us on autism, and attended numerous workshops and conferences. We did everything in our power to better understand what our daughter was going through so we could give her what she needed and help her reach her highest potential. We learned that the earlier you start interventions, the higher the child’s chances for success. Today, Eva is the hardest working little girl I know. Between speech therapy, applied behavior therapy, occupational therapy, physical therapy, and school, she works from 7:30 a.m. to about 7:00 p.m., almost every day. The results of her hard work, determination, and positive attitude are present every day; we truly see the progress she has made and how far she has come.

While we face daily challenges as a family, we couldn’t imagine, nor would we want, our lives being any different. Eva has taught us that autism doesn’t mean less, but rather different. She makes us proud every day with how much she has grown and we are more confident of the future than we have ever been. Victoria has become part of Eva’s “dream team” and helps her sister, as well as her parents, every day by making us laugh, cry, and love with every ounce of our being. We are truly blessed.

On motherhood’s greatest challenges:

Eva’s difficulty with communication, handling change, and transitioning from one task to another balancing that with making sure that Victoria is getting everything she needs to have a happy and fulfilled childhood can be extremely challenging. We have learned to take things moment by moment. We tackle each challenge as it comes, together, always thinking positively of the outcome. To be completely transparent, my deepest and most consuming fear, is the future. The thought of what may or may not happen, the idea of growing old and losing the ability to help my girls, and ultimately the idea of not being here at all. I often wonder who will love them unconditionally as Eddie and I do. Will Eva be able to experience the many gifts life has to offer? Will Victoria resent us for having to help Eva in the future? I can handle the everyday challenges that come our way, and I try to focus on all of the beautiful, endless possibilities still in store for my girls, but it is the unknown that keeps me up at night.

On her best mommy moments:

I think when you have a child with special needs, you quickly learn that everyday moments can be your best mommy moments. In our home, we celebrate everything. For example, when Eva transitions from one task to another without having a meltdown, or when she engages with a peer for more than 10 minutes, high fives are in order. We jumped for joy when Victoria and Eva watched an animated film without Eva wanting to fast-forward through the entire movie. We were full of pride when Victoria completed her first dance recital, or tried a new type food for the first time, despite being a picky eater. Our hearts are full when we see our girls displaying signs of affection for one another. We celebrate these seemingly small moments with big emotion every day. Life can be so unpredictable that we have learned to cherish these moments.

On advice for new moms:

I understand that I am far from perfect. Every day I learn something new about myself and being a mother, but if I had to share some advice with my fellow moms it would be the following:

1.      Do not compare. I know this can be difficult these days, especially with the prevalence of social media, but your child(ren) and your life is unique. Be grateful for what you have and do whatever is best for your family, regardless of what social media and others dictate you should do.

2.      Breathe. I promise, you are not alone.

3.      Cherish every moment, regardless of how simple or grand it is.

4.      Forgive yourself when you are having a bad day. Perfect moms do not exist. The best we can do is learn from our mistakes and try our best the next day.

5.      Please teach acceptance as early as you can. Your children will encounter many different types of children and people throughout their lives. Different doesn’t mean less. Here’s a great reminder of that - "Accepting Differences."

6.      Make time for yourself. I struggle with this daily, but whenever I do have a moment to myself, I blast music in my car or in my house. I love and appreciate a good jam session. It reminds me of who I am underneath all the layers of motherhood and brings me joy!

7.      Make time for you and your partner. That bond is just as important as the one you have with your children. Appreciate and love yourself and one another unconditionally, because you both deserve and need it.

Lastly, if I could give a shout out to the moms with special needs children, I would say be proud of yourself for sticking around and fighting so hard for your little one. This job isn’t for everyone, but you’re doing it and that alone deserves to be celebrated!

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© Nicola Rios Nogales and ispeakmom.com, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicola Rios Nogales and ispeakmom.com with appropriate and specific direction to the original content.

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