I remember the first time I ever heard the word “Autism.” I was sixteen-years-old when the movie, “Rain Man” was released. I didn’t go to the movies to see it, but I did rent it on VHS from my favorite video rental store around the corner. I remember feeling deeply sorry for Dustin Hoffman’s character at first, but as the movie went on, I enjoyed his rigid, but subtle charm. The brilliant movie gave us a glimpse of the challenges experienced by autistic people and those who care for them. And despite the many stigmas attached to the disability, like many viewers, I was drawn to Hoffman’s character and I was genuinely rooting for his happiness. But once the credits rolled up the television screen, I wouldn’t mention the word “Autism” again, nor would I hear it again – until the year 2004.
Richie was born January of 2002, he was a winter baby. However, living in Florida, there was no evidence of winter. Just the occasional crisp, winter cold snap that mother nature through God bestowed, reminding us Floridians never to take our sunshine for granted. Richie is my second child, my first and only son. Of course, when I held him in my arms for the first time, I was in love, and he was perfect.
Richie developed normally during the first six months. He laughed, smiled, cooed, and interacted with us as most babies do. He rolled over at three months, sat up on his own at six months, and began to crawl between seven and eight months old. By his first birthday, he was walking around! The first thing I noticed that was different about Richie (having had Samantha), was that he wasn’t making any eye contact with any of us and he wasn’t talking. He didn’t even try making sounds like “mama” or “dada.” He also showed no interest in playing with any of the baby toys we bought him. Richie would prefer to play with a white plastic spoon over the toys that make sounds or light up. I also noticed that he wasn’t smiling for cameras as he once did. When Richie was eight months old, I had said something to his father and my mother-n-law. They, of course, thought I was worrying too much and told me he was just fine.
When Richie was nine months old, I remember giving him his evening bath, as I did every night. He was crying, but this time I couldn’t figure out why exactly because he had loved his bath. I wrapped him in his towel and carried him to the changing table in his room. While I was putting on his diaper, Richie stretched his body out in an unusual way. Every muscle was stretched straight, his legs, toes pointed out, hands straight out, fingers all straight, and his neck was straight with his head cocked back against the head board of the table. It was almost like his body was experiencing some sort of spasm. It lasted a few seconds, his body then relaxed, he cried a little more and then calmed down. Seconds later, he was back to his normal self. In that instant, the word “Autism” popped into my head. There was something about the way his body looked that had reminded me of the mannerisms and bodily movements of Dustin Hoffman’s character in the movie “Rain man.” I remembered we had a magazine that featured an article about identifying symptoms of Autism in children. After I got Richie comfortable in his crib, I read it. Richie had almost every single indicator (underlined below) in the symptoms list.
Signs of Autism in Babies and Toddlers:
Doesn’t make eye contact.
Doesn’t smile back at you.
Doesn’t respond to his/her name.
Doesn’t follow you or objects as they move.
Doesn’t baby talk or mimic sounds.
Doesn’t respond when name is called.
Behaves as if he or she cannot hear.
Doesn’t imitate movements or facial expressions.
Doesn’t play with traditional baby toys.
Cries for no apparent reason.
Engages in repetitive play (running back and forth, spinning,
Rocking back and forth
Cries when held or touched.
Doesn’t initiate or respond to cuddling.
Doesn’t reach out to be picked up.
Doesn’t make eye contact.
Doesn’t smile back at you.
Doesn’t respond to his/her name.
Doesn’t follow you or objects as they move.
Doesn’t baby talk or mimic sounds.
Doesn’t respond when name is called.
Behaves as if he or she cannot hear.
Doesn’t imitate movements or facial expressions.
Doesn’t play with traditional baby toys.
Cries for no apparent reason.
Engages in repetitive play (running back and forth, spinning,
Rocking back and forth
Cries when held or touched.
Doesn’t initiate or respond to cuddling.
Doesn’t reach out to be picked up.
I knew instantly that Richie had autism. I was devastated and cried for an hour. That night, after Richie’s dad came home from work, I told him. He disagreed with me and said I was wrong. So did everyone else, including Richie’s pediatrician at his next appointment. I knew something was not right, but no one listened. It would be two years later, when everyone finally agreed that Richie had shown signs of significant developmental delays.
The evaluation would take place at All Children’s Hospital. It consisted of a few hours of pure observation. There was a team of specialists observing Richie from behind a glass window, watching while the behavioral specialist tried to engage Richie with different games and activities.
Although I had time to take in the diagnosis, I was still clinging to hope, still praying it wouldn't be so. I wanted to be wrong. When the observation time was over, Dr. Pavan invited Richie’s father and I to join the team in a room nearby. A nurse was playing with Richie, keeping him distracted while we spoke. Dr. Pavan looked at me and said, “Your suspicions were right, mom. Your son has autism.” I was quiet. I knew what she was going to say, but I remember feeling unusually calm. I stood up and made eye contact with every specialist in the room (speech, occupational, behavioral, psychologist, developmental specialist, and Dr. Pavan), and said:
“I will exhaust every resource you have that can help my son.” I remember there being an awkward thirty seconds of silence, broken by Dr. Pavan when she smiled and said, “Well, that’s good.”
The evaluation would take place at All Children’s Hospital. It consisted of a few hours of pure observation. There was a team of specialists observing Richie from behind a glass window, watching while the behavioral specialist tried to engage Richie with different games and activities.
Although I had time to take in the diagnosis, I was still clinging to hope, still praying it wouldn't be so. I wanted to be wrong. When the observation time was over, Dr. Pavan invited Richie’s father and I to join the team in a room nearby. A nurse was playing with Richie, keeping him distracted while we spoke. Dr. Pavan looked at me and said, “Your suspicions were right, mom. Your son has autism.” I was quiet. I knew what she was going to say, but I remember feeling unusually calm. I stood up and made eye contact with every specialist in the room (speech, occupational, behavioral, psychologist, developmental specialist, and Dr. Pavan), and said:
“I will exhaust every resource you have that can help my son.” I remember there being an awkward thirty seconds of silence, broken by Dr. Pavan when she smiled and said, “Well, that’s good.”
She handed me a thin packet of information. In it contained a list of therapists for me to interview and recruit as part of the Early Intervention team. There was also a list of national, state and local agencies. I had no idea what many of them did and how they could help Richie, I was overwhelmed. That night, I cried myself to sleep.
I knew that although it was normal and good for me to mourn this news - I couldn’t mourn for too long. I needed to get it together, I needed to be strong and get busy. In fact, that was my creed in 2004. I wrote “Get busy, Christine,” on sticky notes and put it on the bathroom mirror, my desk at work, and on my computer desk at home. I needed to read, research, and work with Richie as much as I could. I learned plenty, but thinking back now, I might have paced myself better. When your child gets a diagnosis of Autism, as a parent, you can’t help but feel you like you’re trying to beat the clock. All of a sudden there’s an hour glass of sand running out, and you have to work quickly. You keep hearing things like, “Your child needs forty hours of ABA therapy a week,” or “By six years old, if your child isn’t talking yet and if you haven’t drastically improved your child’s behavior and learning abilities, odds are they will never change.” I did what any mother would do. But the truth is I made myself sick instead. I ended up dealing with bouts of severe anxiety due to high levels of stress and lack of sleep (I was working full-time, working with Richie on discrete trial tasks for two hours a night, two hours computer research, reading the several books I bought (my first book was “Overcoming Autism”), and of course cooking and house cleaning in-between. I had no time for anything else. Thinking back on this now, I needed to take it easy. By the way, there have been many cases where children with autism learn to speak at age twelve, sixteen, or even older. There is no deadline. Each child learns at their own pace, and will eventually learn to communicate with others (whether they use pictures, gestures, or verbal communication), they will find their voice.
For parents who have just learned their child has autism, take a deep breath. You’re not okay now, but you will be.
- First, it may feel like all dreams and hopes are lost. I promise you, they’re not. Think different. You will celebrate triumphs, achievements, and many successes throughout your child’s life. Please remember that no one can know for certain what your child will and will not do. Don’t allow anyone to strip you of your hope and faith.
- Nothing anyone says will be the right thing at first. You will despise everything everyone says, even if they mean well. I remember when someone said they had a feeling something was off but didn’t say anything, I was angry that they didn’t say anything. If someone said they were sorry about the diagnosis, I perceived it as pity and was offended. You are going through a roller-coaster of emotions and it is perfectly normal. Try to go easy on the folks who are trying to be supportive. Odds are they’re learning right alongside you and have no idea what to say to try to make you feel better.
- First, it may feel like all dreams and hopes are lost. I promise you, they’re not. Think different. You will celebrate triumphs, achievements, and many successes throughout your child’s life. Please remember that no one can know for certain what your child will and will not do. Don’t allow anyone to strip you of your hope and faith.
- Nothing anyone says will be the right thing at first. You will despise everything everyone says, even if they mean well. I remember when someone said they had a feeling something was off but didn’t say anything, I was angry that they didn’t say anything. If someone said they were sorry about the diagnosis, I perceived it as pity and was offended. You are going through a roller-coaster of emotions and it is perfectly normal. Try to go easy on the folks who are trying to be supportive. Odds are they’re learning right alongside you and have no idea what to say to try to make you feel better.
- Pace yourself. Make sure that you set one hour a night just for yourself before bed. It’s easier said than done, but please try to keep your normal bed time and get your rest. The research, resources, and information will be waiting for you the next day and the day after. Please remember your child and your family needs you. It won’t do anyone good if you become ill.
- This is important: find support in other parents. Being able to ask veteran parents questions about their experiences is very therapeutic and often times reassuring. Yahoo.com has many online support groups (many of them also offer in-person meetings). I would create a new email account exclusively for this. Many groups are very active, and their responses will flood your email account. You can search yahoo groups by county and disability. I’m a member of five autism support groups and I get tons of information from parents, family members, self-advocates, educators, doctors, therapists, you name it.
- This is important: find support in other parents. Being able to ask veteran parents questions about their experiences is very therapeutic and often times reassuring. Yahoo.com has many online support groups (many of them also offer in-person meetings). I would create a new email account exclusively for this. Many groups are very active, and their responses will flood your email account. You can search yahoo groups by county and disability. I’m a member of five autism support groups and I get tons of information from parents, family members, self-advocates, educators, doctors, therapists, you name it.
Contact the following agencies for support, training and assistance.
Parent Training and Information Centers (PTI): Each state has at least one Parent Training and Information Center (Florida has three). These organizations are funded specifically to provide parents of children with disabilities information, resources and training on the services (free of cost) their child receives. You will need training on the following topics, among many others:
IDEA (Individuals with Disabilities Education Act) and Special Education Processes
IEP (Individualized Education Plan): This is a very lengthy and detailed document that includes information on how, where, and what your child is taught in school. It also includes information on therapy, supports, accommodations, test methods, and other supplemental services needed.
FAPE: Your child has a right to a Free and Appropriate Public Education.
Section 504 – Your child’s right to access to, and participate in federally funded programs.
Inclusion – Your child has a right to learn, play and participate in activities alongside his/her peers.
Parent Training and Information Centers (PTI): Each state has at least one Parent Training and Information Center (Florida has three). These organizations are funded specifically to provide parents of children with disabilities information, resources and training on the services (free of cost) their child receives. You will need training on the following topics, among many others:
IDEA (Individuals with Disabilities Education Act) and Special Education Processes
IEP (Individualized Education Plan): This is a very lengthy and detailed document that includes information on how, where, and what your child is taught in school. It also includes information on therapy, supports, accommodations, test methods, and other supplemental services needed.
FAPE: Your child has a right to a Free and Appropriate Public Education.
Section 504 – Your child’s right to access to, and participate in federally funded programs.
Inclusion – Your child has a right to learn, play and participate in activities alongside his/her peers.
CARD (Center for Autism and Related Disabilities): Leads the way in the successful treatment of autism.
Autism Society of America: Improving the lives of all people affected by autism.
Autism Speaks: The First 100 Days Kit is a great resource.
Centers for Independent Living: Provides support and advocacy for people with disabilities.
APBS (Association for Positive Behavior Supports): Increase quality of life and decrease challenging behaviors.
Autism Society of America: Improving the lives of all people affected by autism.
Autism Speaks: The First 100 Days Kit is a great resource.
Centers for Independent Living: Provides support and advocacy for people with disabilities.
APBS (Association for Positive Behavior Supports): Increase quality of life and decrease challenging behaviors.
Florida Specific Agencies:
APD (Agency for Persons with Disabilities): State agency program that provides support and services to people with developmental disabilities and their families.
FDLRS (Florida Diagnostic Learning Resource) : Provides diagnostic, instructional, technical assistance and support to parents, families, educators, and school districts.
Family Care Council: This agency makes your legislative voice known.
Vocational Rehabilitation: Assists individuals with disabilities find and maintain employment.
APD (Agency for Persons with Disabilities): State agency program that provides support and services to people with developmental disabilities and their families.
FDLRS (Florida Diagnostic Learning Resource) : Provides diagnostic, instructional, technical assistance and support to parents, families, educators, and school districts.
Family Care Council: This agency makes your legislative voice known.
Vocational Rehabilitation: Assists individuals with disabilities find and maintain employment.
Florida Bureau of Exceptional Education - Administers programs for students with disabilities.
Florida’s Multi-Tiered System of Supports – Learn about RtI (Response to Intervention) and MTSS (Multi-tiered System of Supports) strategies used to maximize student achievement.
FLAPBS (Florida Network Association of Positive Behavior Supports)- Provides support to individuals with disabilities experiencing challenging behaviors across all settings in order to improve their quality of life.
Florida’s Multi-Tiered System of Supports – Learn about RtI (Response to Intervention) and MTSS (Multi-tiered System of Supports) strategies used to maximize student achievement.
FLAPBS (Florida Network Association of Positive Behavior Supports)- Provides support to individuals with disabilities experiencing challenging behaviors across all settings in order to improve their quality of life.
This is a new journey that will be filled with peaks and valleys, highs and lows, and sometimes feelings of despair and helplessness. You’ll get through the tough times. Once you’ve set up your support system, whether through family or friends, you’ll find each day gets easier. You will be pleasantly surprised by the comfort of new friends discovered in the autism community, filled with wonderful people you will come to know. Your child will bring you moments of joy and love that are inexplicable and unparalleled to any emotion you’ve ever experienced. I had no idea that I would parent a child with a disability. I had no idea that I would become impassioned with helping other families like ours. I had no idea my heart had such room for this overwhelming love, for which there is no instrument to measure, no words to describe, and no end to its continuing growth.
My son was given a diagnosis of moderate to severe autism. I was told that he would most likely end up in an institution, and I was told he would never speak. Richie and I still plan to prove that prediction wrong. We are living our lives and planning our future. Richie’s destiny lies in his hands and the support he receives, not the prognosis given to him at two years old. In the meantime, we live each day in a home filled with love, nurturing, and understanding.
We get through our issues one day at a time, and so will you my friend.
© 2015 Sensory Friends
We get through our issues one day at a time, and so will you my friend.
© 2015 Sensory Friends
RSS Feed