The Discovery

 As parents of autistic or special needs children, we are all familiar with the feelings of doubt or guilt that might be associated with your child's diagnosis. We all have our own unique stories to share about what happened when we discovered our child had special needs and I thought it might be helpful to share some of those stories. Some time ago, I asked for some parents to come forward if they were willing and share what happened when they found their child was autistic. Two very wonderful women responded and have given me permission to share their stories and I will share my own personal experience as well. As always, feel free to comment if you have any thoughts to include or if you would like to share your own personal story. I am interested and intrigued to discover all the many way different ways of handling an autistic diagnosis. 

Nancy

Nancy has a son who is on the spectrum. She said that she couldn't help but compare him to his sixteen month older sister and notice some differences while he was still just an infant. By the time her son was just over two years old, he still didn't speak and exhibited traits of echolalia. Echolalia exists when a person can only repeat sounds or phrases they hear, which can seriously limit their ability to communicate. Nancy also said that her son would have what she thought were temper tantrums. She discovered later he was suffering from a sensory overload. She thought preschool might help her son. After witnessing one of his meltdowns at school, she was asked not to bring him back. His teacher suspected that he may have some developmental delays. Her suggestion only confirmed what Nancy herself had been suspecting all along. The same day, Nancy contacted her son's doctor who referred them to developmental pediatrics. After all the necessary testing, her son was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified. Nancy reported she relieved at the diagnosis, finally giving her some answers on how to help her son. 

Nancy reports that her son struggles with socialization and communication. However, he was still highly intelligent, having taught himself to read by the time he had been diagnosed with autism. He didn't start speaking until he was four years old.

Although his diagnosis was a relief, Nancy feared how others may treat him because of his differences and disabilities. She said she didn't care about his differences herself. In fact, she took the opportunity the diagnosis gave her to really get to know her son and understand him better. 

Nancy's husband had been deployed at the time of their sons testing and diagnosis. Upon informing him of the changes their family would be facing, he displayed a very positive attitude and was eager to get started on what he needed to do to help their son. They worked together as a team, having their son involved in occupational and speech therapy. When he was four years old, she said they began in home ABA therapy that she claims was life changing. 

Nancy says her son is now twelve years old. He still struggles with communication. She reports that they have him placed in a school where others don't seem to care that he is different and that truly care about him. He went from barely speaking to being on the AB honor roll and attributes this dramatic change to his ABA therapy. ABA therapy is a type of therapy that improves social, communication and learning skills through positive reinforcement. 

Nancy has kept her son informed of his autism and taught him that autism is his super power. Her and her husband's positive attitude has helped him become something of an advocate for himself and for others with autism. 

What a truly inspiring and incredible story. Not everyone would act as Nancy and her family did during this time. Instead of feeling guilt and overwhelming concern, they showed positivity with a very proactive attitude and not only provided their son with the education he needed, but educated him on his condition as well. Nancy and her family should be very proud of themselves for handling such a difficult situation in such a positive way. 

Stacy

Stacy was sixteen years old when her daughter was born. At eighteen, she had her daughter tested for autism. After four hours of testing and activities, they were able to give her a positive diagnosis. Stacy said that, at the time, she had no idea what autism even was. Stacy left the office with a load of paperwork to fill out and lots of confusion. She decided to find out on her own what autism might be. Stacy said she learned firsthand about autism by taking care of her daughter and by taking an early bird course that helps prepare parents and caregivers for the challenges autism can have . 

Stacy has reported feeling frustrated at times and a feeling of helplessness occasionally, but has never really held any negative emotion about autism. She said that there are times when her daughter's autistic outbursts can begin to impact her family, but through the help of therapists and early intervention, her daughter has learned coping mechanisms that work for her and has helped the rest of the family how to react in certain situations. 

Stacy says her daughter is fourteen now. When her daughter was younger, she attended speech therapy and had pediatric appointments every nine months. Today, she receives most of her help in school and goes to support groups. 

Another wonderful story. Stacy's reaction to an autistic diagnosis was to educate herself in order to be better prepared. That education has helped her daughter's developmental growth and taught the rest of the family how to cope when things become difficult. Stacy is another inspiring woman and mother.

Jennifer

This is my story with Solon. When I was thirty five, I discovered I was pregnant and had rheumatoid arthritis at the same time. I was considered at risk because of the arthritis diagnosis and was put on medication they said would not harm the child. 

Solon spent the first ten days of his life in the hospital. Even during that short amount of time, the nurses suspected he was delayed somehow. I left the hospital having already armed with this information. Watching Solon grow, it was difficult not to notice that he was different somehow, yet not really behind any other child his age. When Solon was seven months old, I started to notice that he had stopped progressing. He had just began learning to crawl and then just stopped trying suddenly. 

Solon was more than a year old when he took his first steps. At two years old, he still had no sounds to make. Our primary form of communication was him screaming at the top of his lungs and me having to frantically guess what he needed. I kept Solon on a very organized schedule and this stopped the screaming fits almost completely. I decided to seek out help. 

By the time Solon was three years old, he had already been through a year of speech therapy and developmental intervention with a diagnosis of developmentally delayed. After turning three years old, his therapist turned me to Community Partnerships of Idaho (CPI), an organization that works with autistic and special needs individuals to help them reach their goals. This same therapist also encouraged me to enroll him in a preschool for special needs children. I already recognized that Solon was different than the others and worried how he would be treated at school by the other children. I actually wasn't sure he would be safe there. 

I am a single mom and Solon and I had spent all of our time together. So, when he began preschool, to say he suffered from separation anxiety would be putting it mildly. His first few weeks of school were so stressful to him, he was making himself sick and I had to bring him home early almost daily. Solon was shy and quiet when he first started, kind of stuck inside of his own head. He had to be taught how to play with other children and how to socialize. By the time his first year of preschool was finished, he had already learned how to use sign language to communicate his needs and had finally spoken his first word. His preschool teacher suggested I put him in speech therapy and occupational therapy for some extra added help. 

When Solon was four years old, I was told that in order for him to continue working with CPI, he would need a different diagnosis than developmentally delayed. There had been a few people who told me that he might be autistic, although none of them were qualified to make that kind of decision. I didn't believe he was autistic, but had him tested anyway. After a full day of testing, playing and talking, a group of about five people unanimously agreed that he was autistic. It's hard to argue with that many professionals. 

I was taken into a back office to speak to with someone. He asked me what kinds of programs Solon was involved in. I told him that Solon went to a preschool for special needs children, worked with CPI after school and attended occupational and speech therapy inside and outside of school. The doctor just shrugged at me and said that I already had him involved in any resource he would suggest to us. 

It may seem that I had a head start on Solon's autism, but really I still didn't feel prepared. I had only heard of autism and had never met anyone with that diagnosis. Also, I was a single mom with very few friends. I didn't feel ready to take on something like autism all alone. However, when a person finds themselves in this kind of situation, the only thing to do is go through it. 

I cannot begin to express all that I have learned watching Solon grow and all the changes he has made. His personal development has taught me so much about autism and also about myself. Solon suffered from some of the same things I did when I was young. I guess you could say that my childhood issues helped prepare me to be his mother. 

Solon is fourteen now. He has gone from being a shy and quiet kid, afraid of leaving his mother's side, to a very outgoing and friendly teenager always ready to take on some kind of adventure. This is due to all of the help he has received his entire life. I actually don't take any credit for how Solon has turned out and gladly give the glory of his successes to his teachers and workers. Solon has been very blessed to have people in his life willing to dedicate their time to help him learn and grow. He is a changed boy today because of their help and inspiring dedication.

I would love to hear any thoughts you might have about our reactions to autism and please feel free to share your own stories if you like. I always enjoy learning all the different and creative approaches we have taken to help our children. Remember to subscribe to be notified any time there is a new post and follow me. Also, please leave a comment! I love knowing what others have to say. 

And, as always, stay positive - Jen