Our People Stories
While living in California, over 15 years ago on December 7th, 1996, I welcomed a beautiful baby boy named Nicholas into the world. He was full-term and weighed in at 8 pounds. Nicholas’ brother Skyler came into the world nearly 3 years later. I was so excited and anxious to be a first-time mother. My pregnancy went well. I had regular prenatal care including several ultrasounds. No red flags.
However, just after giving birth naturally and briefly holding my new bundle of joy, Nicholas was whisked out of my arms and rushed to the NICU at Stanford Hospital in Palo Alto, CA. He required oxygen and the nurse observed some characteristics that could have been indicative of Down Syndrome. I was in disbelief!
After 8 days in the NICU, it was determined that Nicholas was born with an AV heart canal defect and Down Syndrome. He would require surgery to repair his heart in the near future, but in the meantime would take medication. The cardiologist wanted us to try to get him up to 15 pounds before performing the surgery to reduce his risks. Nicholas’ heart was my main concern early on. The Down Syndrome was in the background as an issue to deal with later on.
When Nicholas turned 6 months, he was up to 15 pounds and so the surgery was scheduled and performed. We were told that he would spend up to 10 days in the hospital. He was out in 5. He did remarkably well. It was the scariest thing I have ever had to go through. My baby had open-heart surgery and was on bypass. This was the first time I had left him out of my sight since he was released from the NICU at 8 days old.
Now my attention was on how to deal with the Down Syndrome. Nicholas was referred immediately for Early Intervention Services because of his Down Syndrome diagnosis so we had people coming into our home early on including a teacher, physical therapist, occupational/feeding therapist, massage therapist and a speech therapist. Nicholas and I participated in Gymboree and Mommy and Me swim classes. I read to him every day while he lay on his boppy pillow. We did it all! I was determined, and still am, to provide Nicholas with every opportunity possible to be the best he can be and he is not disappointing anybody.
Nicholas was a happy and relatively easy baby. However, when he got a little older I noticed some changes including less eye contact and odd behaviors including echolalia. I also had the opportunity to meet other children with Down Syndrome at his schools and in the various recreation programs in which he participated. I realized that he was not progressing as well as most of these children in speech, potty training, fine motor skills, gross motor skills, social skills, etc. I was concerned. I brought these concerns to all of the medical and educational professionals that I met. These professionals brushed off my concerns and explained everything away as being related to the Down Syndrome. I was not convinced.
I did not get a second diagnosis of Autism for Nicholas until he was 11 years old!!!! I felt relief and validation, yet sadness at the same time. Over the years, Nicholas has received several other medical diagnoses along the way, including a thyroid disorder, but he is currently happy and healthy which is most important. Though at times, life has been challenging, I wouldn’t trade Nicholas for any other child. He brings me so much joy!
We moved to Rochester around 3.5 years ago because I was disappointed in the mediocre educational programs available for Nicholas. For those of you who have always lived n Monroe County, this area has a great reputation for providing excellent and numerous services to special needs individuals.
About 1.5 years ago, I heard about the Autism Council of Rochester’s Soccer Clinic and other recreational programs. Nicholas has participated several times in the Soccer Clinic and the Basketball program. We have had wonderful experiences with both! I was surprised at the low attendance at both Clinics and wish that more folks would realize what great programs the ACR puts on. Let’s get the word out!!!
Nicholas lives in Webster with his mom, 12-year-old brother Skyler, and a yippy 5-pound white Chihuahua named Bella. He attends the School of the Holy Childhood in Henrietta in a 12:1:1 classroom. He participates in many recreational activities in the community including Special Olympics, CDS programs, Challenger Baseball, Septa Soccer, Septa Basketball, Septa Flag Football, Ties Drum Circle, and the Autism Council’s Soccer and Basketball clinics. We are always looking for great programs and activities to keep Nicholas physically fit and socially engaged.
Christopher was born on June 18, 2002. He seemed to be hitting all the major milestones as he grew from infant to toddler. He would laugh, make eye contact, started walking at nine months, and he started saying daddy and mommy all right on time.
When Christopher entered preschool, his teachers noticed that he was not as advanced as his classmates were. His mom took him to the doctor. The doctor gave her the assurance “that he’s a boy, they are always a little delayed. He’s fine.” His mother was not convinced.
The family noticed that Christopher repeated everything he heard including both sides of a conversation. They later found out that is called “echolalia.” They noticed a few other idiosyncrasies starting as well. Before he sat down to eat anything, he would have to go to the bathroom. He didn’t’ like wearing clothes once he got home and would immediately strip down to his underwear. His teachers said he often played alone and would line up his toys in straight lines. He was fascinated with planes, trains, and motorcycles. His mother began to work closely with his preschool teachers, and had a child psychiatrist test him. Her diagnosis was Autism Spectrum Disorder.
Initially, the news was devastating to his family. Soon they proceeded to see what they could do to help Christopher and prepare him for the future. Now, he’s in 3rd grade at a different school where he’s in a 6:1:5 class setting. There are six students with one teacher and five helpers. He has advanced since being in this new class setting.
Christopher’s grandmother found out about the Autism Council of Rochester (ACR) and was interested in the different recreational programs and services we offer children with autism and other disabilities. She got him involved in some of our Soccer Camp where he learned some soccer skills. But Chris loves basketball. So much so that his coach would have to tell him, “Chris, ball on the floor!” Chris would be twirling the soccer ball on his fingers and occasionally would make a basket.
Christopher is after all a boy…a boy who enjoys cartoons, Wii sports golf, and bowling just like many kids his age.
It was a nice autumn day and sitting on my front porch, I observed a small figure rocking back and forth while mowing her lawn for the third time this week! She spotted me and headed toward my house. She called out to me, and I encouraged her to come and sit and talk with me for a while.
Her name is Patty, she is 18 years old and has autism. Having just graduated from the local school district’s special education program, Patty is unable to get a job because of her developmental disability. She realizes that she lacks skills to help her get a job. Patty also explains that her family does not feel that they can help her. Patty and I have had this conversation on numerous occasions. We had started talking about her transition to the “adult world” when she was about 14 years old.
Somewhere along the way, someone forgot to ask, or failed to prepare Patty for what she wanted to do after she finished her high school special education programming .I encouraged Patty to stay positive, and she headed off to finish her mowing task.
A small tear rolled down my face, as I wondered about all the challenges that Patty faces --having a developmental disability, taking numerous medications to stay on task, and other numerous behavior issues that are a part of Autism Spectrum Disorders. Exactly what will Patty’s future be like in a year or two? Will she receive any specialized skills or training to help her at this stage of her life? Who is going to help her figure out what job she wants, or where she will live? What type of career would Patty like to have? Or will she continue to wander the neighborhood aimlessly with no future goals?
At The Autism Council of Rochester, we are focused on helping Patty answer those questions. Our mission is to help provide the support and direction young people with ASD need to make a successful transition into the “adult world.”
As a parent of a child with autism who was also nearing high school graduation, Lawana found that her community was lacking collectively in individualized services for children and young adults with Autism Spectrum Disorders (ASD). She could not find any agencies or persons who understood or knew what services and programs were needed to assist young adults with autism, like her daughter, make the transition into the community.
Faced with the definite and significant gap between special education programs ASD students receive in high school and community integration. Lawana started out on a mission to learn what she could about the services that were available to help her and her daughter transition into adulthood. Lawana spent the summer of 2007 contacting local Social Services agencies and was surprised to learn of the lack of collaboration between them as they often did not know what programs existed in other agencies.
Lawana then began to meet with other families of ASD children acting as an advocate for them in various school districts and contacting agencies about the availability of services. It was out of her love as a mother, her struggle to find support, and a frustration in the lack of local services that Lawana founded The Autism Council of Rochester in 2007. Today the agency is transforming the lives of special needs children with Autism Spectrum Disorders and giving them and their families hope of a brighter future.
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