To most people, Alex appears to be like any other five-year-old kid …

By Francine Kollydas

As a National Grid employee, I am proud to be part of an organization that places tremendous value on inclusion and diversity. Like many colleagues, I can see the power of having a diverse culture in action in our workplace every day. As a parent of a child with special needs I have broadened my thinking around inclusion and diversity, and am hopeful my child will benefit from an inclusive and diverse culture in our community as he grows.

Alex is a sweet and smart five-year-old boy who was diagnosed with Autism Spectrum Disorder (ASD) nearly two years ago. He is considered to be high-functioning and mild on “the spectrum.” According to the advocacy group Autism Speaks, ASD and Autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. I’m hoping by sharing Alex’s story I can help bring additional understanding and awareness to this often misunderstood disorder.

To most people Alex appears to be like any other five-year-old kid. He enjoys running, jumping, playing sports and just playing in general. Alex struggles somewhat with the difficulties mentioned above. We realized early on that Alex was speech delayed and he has been receiving speech therapy since he was 22 months old. As he grew it became clearer he needed more than just help communicating.

There were several challenges we had to face. As a toddler, Alex would have complete meltdowns if things weren’t in a certain order or his routine was broken in any way. Because he couldn’t always communicate his wants and needs he’d sometimes start screaming for what might have seemed to be no apparent reason. He had to be reminded to point to what he wanted or prompted to say “I want/ I need…” and those things were no small task. His frustration levels were heartbreaking. He also had sensory issues we just didn’t understand. Bath time, for instance, was torture for everyone. Alex screamed in anticipation of water being poured on his head to wash away the shampoo. Alex’s speech therapist suggested using social stories to help Alex make sense of the world around him. Social stories take common situations that can be overwhelming, particularly for children on the spectrum, and break them down into simple steps. Over time the use of a bath time social story helped Alex “get through” his bath and not be on sensory overload.

As first-time parents, many times we weren’t sure if what Alex was experiencing was typical for toddlers or if it was something else. The turning point for us was after a severe meltdown Alex had when he was three, because our car was parked in a different place than it normally was at home. Through his cries he screamed “Fix it Mommy, it’s not right.” After that meltdown subsided he came to me, threw himself in my arms and said repeatedly, “I need help, I need help.” I’ll never know exactly what he meant in that moment. I suspect he meant literally “Help me move the car.” However, I knew he needed more help than we were giving him at that time. That night, my husband and I each took an online evaluation that helps families determine if a child should be tested for ASD. Our scores were almost identical. Shortly after that, Alex was tested and diagnosed with ASD.

Today – through the right combination of therapies (speech, occupational and behavioral) – Alex is truly thriving. He has also benefited from an inclusive classroom setting where there is a mix of typically developing children and children with special needs and various educational supports. Communication, social interactions and repetitive behaviors are still challenges for him, but he continues to receive the right levels of support, which enables him to continue to make progress in overcoming those challenges.

Since Alex has been diagnosed with ASD, our family has been on a journey of understanding and acceptance. Here are some of the things we’ve learned along the way:

  • Alex’s diagnosis does not define him. He is just simply Alex. Having ASD is a part of who he is, but as an individual he is so much more than the diagnosis would suggest.
  • In some ways Alex’s struggles have affected the whole family, including his younger sister. We had to learn strategies to help all of us cope. We are still learning.
  • Autism is truly a spectrum disorder and individuals with Autism have a wide range of needs and talents. It’s estimated that about 40% of individuals with ASD have average to above average intelligence and can have exceptional abilities. Although language and communication hasn’t come easily to Alex, reading and math seemed to come almost naturally to him. He can read and has memorized many of the street names in and around our neighborhood. Many times he can give us turn-by-turn directions to get to almost anywhere locally, naming every street and highway along the way. Not bad for a five-year-old backseat driver! Alex often talks about street names and directions in conversation. We, of course, are amazed by this talent. However, it’s not something five-year-olds generally talk about, so it makes it difficult for his peers to relate to him at times. Our challenge then is to nurture his talents but also to help him find balance.
  • To fit the spectrum of needs, there is also a spectrum of services available for individuals with ASD. Knowing where to find help is key – like identifying a network of professionals, or others, to help navigate the system. Having a strong faith and leveraging the skills I’ve developed on the job (communication, research, building relationships, negotiating and influencing) have been invaluable in finding the right solutions and advocating for Alex.

Alex-IandDTo our family, of course, Alex is special in so many ways and he has taught us more than we could have imagined about the value of inclusion and diversity. Alex has reinforced for me that not everyone sees and reacts to the world the same way. He reminds me to continually challenge myself to respect different ways of thinking and find ways to effectively communicate with others who may think differently than I do.

Before Alex, my understanding of ASD was very limited. I suspect the same is true for many others. Often times, folks know individuals with ASD who have more severe developmental delays or disabilities than Alex does. My hope is that through our family’s story we can shed some light on the other end of the spectrum, where the impact of the disorder is not always visible to others. Ours is just one story among many within our National Grid community. If you have a story to share please do, so we can all benefit from broader awareness. If you’re interested in learning more about ASD, please visit www.autismspeaks.org.

Check out previous articles in the series:

Overcoming Adversity: Meet National Grid’s Michael Brodsky http://us.ournationalgrid.com/news-article/overcoming-adversity-meet-national-grids-michael-brodsky/
Disability Mentoring hits Res Woods http://us.ournationalgrid.com/news-article/disability-mentoring-hits-res-woods/
Who Helped Who? http://us.ournationalgrid.com/news-article/who-helped-who/

16 Comments

Bob Kalberer

As the parent of a special child, I can not agree enough that her diagnosis or disability does not define her. She is as beautiful, smart, loving, and thoughtful as our other children, but in God’s and our eyes she is perfect.

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Mary Holzmann

Thank you for sharing your personal story. I am impressed with how well you’ve described the challenges Alex experiences. Keep up the great job you are doing raising Alex. I can relate to what you’ve described. My daughter Kristen, also has ASD. She is 27. Although it has been a life-long and bit of an uphill journey, Kristen has completed an Associate’s degree with a 3.24 average and works 2 part-time jobs. She fully understands the challenges she has faces and the progress she has made by working hard. She is proud of her accomplishments (of course so is our family) and she is one of the happiest people I know. She loves her jobs and the people she works with. She wouldn’t have made it where she is today without all the team work at home and with the professionals we’ve been so lucky to work with. If anyone is interested in doing a ASD support group monthly via conference calls I can set that up during lunch-time. Please e-mail mary.holzmann@nationalgrid.com and put “autism support group” in the subject line.

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Francine Kollydas

Thank you Mary for your note and for sharing your story as well. It so is helpful to me to hear from others who have had similar challenges. I am happy to hear of all of Kristen’s accomplishments through her hard work and the help of a small village!

A special thank you to you and others for the work you do through the Enabling Employee Resource Group. Events like the Disability Mentoring Days and the Employability program, which offers internships to young adults with ASD, open up a world of opportunities and have real impact for all involved.

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Alex Zhukovsky

Thank you Francine for sharing your story which teaches all of us what it really means to be a true parent: loving, caring, helping and inspiring!

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Katerina Tsirimpa

Thank you Francine for sharing your story with such integrity and openness. It takes true courage to speak for diversity and inclusion of one’s own accord and personal life.

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Jayesh Patel

Francine, thank you for sharing such an important part of your life and the challenges you have faced. It is encouraging and pleasing to hear Alex is progressing in overcoming his personal challenges. I can fully appreciate how hard it must have been for you and Alex. My wife and I went through a different set of challenges when our daughter (Kiah) was diagnosed with Crohn’s disease at a young age, so thank you again for sharing your story.

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Francine Kollydas

Thank you Alex, Katerina and Jay for taking time to read through this article and for your wonderful comments.

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Tiffany Forsyth

You’ve heard this many times before but……Thank you for sharing! He’s blessed to have you as parents and this statement is resounding to me “Alex’s diagnosis does not define him. He is just simply Alex.”

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Lorraine M. Lynch

Thank you for sharing Francine. Alex is so lucky to have you and Paul advocating for him every step of the way. Keep striving for balance and enjoy every moment with Alex and Cassie.

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Estrella Tindaan

Francine – what an amazing story you have shared. I did not that know that Alex had those difficulties. You are a great Mom to Alex, you must be so proud of him. He looks so adorable and he’s a great kid.

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Ed Brodsky

As a father of two disabled childrent, one with Autism, some days are unbelievably challenging. However there are some days that are absolutely rewarding. Recognizing the symptons for Autism are so critical so therapy can begin as soon as possible. I have unfortunately seen many cases where the parents are too busy or in denial and do not get the children the services they need (or in some states, the much needed services aren’t always provided). Great to hear Alex is thriving and much of that success is due to his family’s committment !!

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Rita Moran

What an inspiration you and your family are!! My sons have three close friends with ASD who are successful young adults who like you had incredibly supportive families. Their talents are extraordinary and they all work in fields that play to those strengths. With your love and support Alex will continue to thrive and expand his talents as are my son’s three friends. Thank you for taking time to tell your story.

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Karla Ayala

Thank you for your story! My oldest son is also diagnosed with ASD and SPD (sensory processing disorder) and I can relate to yours very much. Your sentence, “He reminds me to continually challenge myself to respect different ways of thinking and find ways to effectively communicate with others who may think differently than I do,” is especially meaningful. I have learned so much from my son. Most people would not guess my son is on the spectrum and that is especially challenging when his behavior is not what people expect or desire. Again, thank you!

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Francine Kollydas

I am so genuienly touched by all the wonderful comments here and grateful for all of you that took the time to read this story. Also a very special THANK YOU to those of you also shared some of your personal experiences with family members or friends with Autism Spectrum Disorder.

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