Let’s all admit that having what many consider an imperfect baby after nine long months of pregnancy is every mother’s nightmare. Most of us realize that absolutely no love will be lost for our beloved child, but we fear the stress it will place on our families and ourselves. We fear that our child will struggle, and we fear the reality that we will be forced to watch that struggle, incapable of making it all go away. Michelle Incandela has faced that fear, that dreaded aberration, and has won a shining victory.
This is Michelle’s six-year-old daughter, Gina Marie Incandela. The girl can sing!
So where’s the nightmare, you ask?
Surprise! Gina also happens to have autism. If you don’t know much about autism, this may come as a shock. Gina is her mother, Michelle’s, inspiration and hero. Michelle is a hero in her own right, doing whatever she can to help Gina develop her extraordinary talent while also facing the reality of autism. With Michelle’s dedication, Gina’s following has grown considerably. She frequently sings The National Anthem at major sporting events around the country, has appeared on NBC’s Today Show, and has recorded a single, “Dare to Dream.”
In addition to a speech and language delays, Gina had many other developmental delays. According to Michelle, Gina lacked age appropriate social skills. She had poor eye contact as well as sensory and feeding issues and more. She had difficulty transitioning and didn’t adapt well to new environments. She was often afraid in public and couldn’t tolerate noisy places such as theme parks or carnivals. She had odd behaviors such as scratching the floors and walls. She had no imaginary play skills.
When faced with this picture of autism, no one could have imagined what breathtaking beauty and talent lay hidden in the heart and soul of this little girl. It reminds us all that no matter what difficulties we face, we each have something unique to give, and that the people in our lives who seek to identify those hidden pearls within us, hold them out for not only ourselves but the world to see, and help us live a positive-focused life are truly miraculous individuals.
Michelle is now a proud member of the Aberration Nation. She was quite excited to share Gina’s story.
Describe autism for us using your own terms? What is it like to have a child with autism, and how does it impact your day-to-day.
Autism is a very complex and difficult disease to describe. It’s a social disorder which affects all children differently. The symptoms vary between children and they vary from day to day. Gina is very high functioning. There are moments and days where I have to remind myself that she has autism. There are other days when I can’t help but be reminded because it is so difficult. Autism is sometimes like having an invisible wall between you and your child. There are days when Gina is very disconnected and difficult to reach.
Gina must deal with a condition that has and will impact her unique place in this world, and yet she also has an incredible talent. How do these two facets of Gina work together? Help us understand the connection?
When Gina was first diagnosed, the doctor was unable to tell us if she would ever speak and whether she would be able to function as an independent person in society. I feel blessed and incredibly lucky that she has progressed the way she has. But, I’m always aware that while she has some incredible talents and abilities, she will always have some symptoms of autism that will make some things more difficult for her. We’ve tried to focus on the positive and encourage that which comes easy to her and have used that to incorporate lessons in areas which do not come so easy.
Gina loves singing and loves performing. She truly appreciates the fact that her singing makes people happy and loves for people to be proud of her. We do everything we can to encourage the connection she is making with her audience. I think when people are touched by Gina’s voice and hear her story, they are learning about autism. All autistic children are unique in their own way. Gina’s talent and the sharing of her talent is helping to create awareness for all those kids.
She thoroughly enjoys sharing her passion for music with others. She is quite comfortable on stage before thousands of people. Even though she is comfortable, performing requires a certain level of discipline and practice. Gina needs to rehearse and adapt routines to different events. The ability to be flexible and to change routine are areas where Gina has had difficulty. We use her performance practices to work on transitioning to new environments and break from routine. We have noticed that she is slowly becoming more flexible and does not become concerned with changes to routine as she did previously.
Gina’s amazing vocal talent helps to connect her to this world and the people in it. I think it will always serve as a form of expression for her. It is sometimes easier for Gina to express herself through music than through simple speech.
How did Gina come to be diagnosed with autism, and what was your initial reaction? How did you cope?
We took Gina for evaluations when she was 2 years old because she was still not talking. I realized at that point that something was not quite right because when she would try to speak the only sound she could make was “eeeeee”. I thought she needed some some form of speech therapy, but the idea of autism never entered my mind. Looking back, Gina displayed many behaviors that were clearly symptoms of autism. At the time however, I mistook these for behavioral quirks.
There were so many red flags that I missed because I just had no knowledge of this disease. When one of the first therapists evaluated her and informed us that Gina had autistic traits, I didn’t take it too seriously. I wasn’t devastated and I wasn’t in denial. I just didn’t think the therapist was correct in her opinion. I was unaware that autistic children can be very intelligent. Gina was able to understand us and she had excellent memory skills and was quite smart. She loved to be held and hugged, she laughed and smiled, and I thought, “This is not a child with autism.”
I ordered several books on autism and sensory deficit disorder. After reading the materials, it was clear to me that Gina was in fact autistic. I was quite shocked but I still didn’t feel devastated, and wasn’t in denial. I knew the experts were correct. I did however, feel an overwhelming sense of pressure. All the materials suggested that early intervention is the key to success for many of the kids and I felt as though the clock was ticking. The evidence suggested that intensive therapy should be administered between age 2-5 when the brain is most capable of adapting. I wanted Gina enrolled in every possible program and therapy. I can remember visualizing Gina on the other side of a window that was closing and I knew I had to do something to keep the window open, or she would remain on that side forever. I was determined not to let that happen. This was going to be a fight.
I relied on my family heavily during that time. When Gina was diagnosed with autism … it was a diagnosis for our entire family. We coped as a family. We had therapists conduct training sessions at our home to educate us about autism and what we could do to help Gina. We all needed to learn how to model speech, redirect, and deal with any issues that came up appropriately. We made every family outing a form of therapy, whether it was a meal at a restaurant or a trip to an adventure park. Mom, Dad, Grandma, Grandpa, Aunts and Uncles all became part time therapists. We played learning games, and became experts at ignoring negative behavior and reinforcing positive behavior. I think most importantly, we created an environment of consistency between therapists, school and home. We did everything possible to continue what she was learning in her full time day program to her home life.
People are unaware of how broad the autistic spectrum is and that there are many forms of autism. Many think of the movie Rain Man and think all cases of autism are severe and have the same symptoms. In fact, no two people with autism are the same. The disease varies widely with respect to symptoms and severity. There are many autistic people that are quite affectionate and don’t mind being touched. Gina is friendly and now very talkative so people assume she can’t have autism. Also, autism does not go away. There are those who think kids receive therapy and are cured. The autistic traits and differences will always be there and they will always need to adjust to a world they perceive differently than most. But, there is hope for children as many who receive therapy improve drastically.
What has Gina’s autism and amazing talent taught you about yourself and others? How has it made you better or stronger?
It has taught me that I should not underestimate what my children are capable of, or set limits on what they can accomplish. It has also taught me acceptance for the differences of others, and I am amazed at the strength and beauty of the human spirit. I’m much more appreciative of the many blessings in life and I think it has changed my priorities for the better.
1. Offer to babysit. Parents with special needs children are under an exceptional amount of stress. Quiet time is hard to come by. Most people are weary of staying with an autistic child but, frequently the parents are desperate for some outside help.
2. Learn about autism. Become aware of the signs and symptoms and approaches to dealing with autism. Let the parents know that you want to learn about this disease and what you can do to help.
3. Get involved with an autism charity or foundation to raise awareness. Helping to find a cure will help everyone.
If you could say anything to the world about autism, what would it be?
That it is a horrible condition affecting our children in record numbers and we need to work together to find a way to cure it.
To learn more about Gina, please visit her Web site.