Sesame Street's newest muppet, Julia, met autism advocates and the press at an event held at the Capitol and hosted by actress Holly Robinson Peete earlier this month. Julia made headlines recently after a segment on 60 Minutes announced that she would be joining Elmo, Big Bird and the other muppets of Sesame Street on the TV show. Host, Holly Robinson Peete has a son on the autism spectrum and has been an advocate for many years, even launching her own organization, The HollyRod Foundation.
“I always like to say I wouldn’t change my son for the world but I would like to change the world for my son,” said Peete.
Unfortunately, the world is slow in responding and recognizing the many faces of Autism. There isn't enough resources or healthcare for families.
Neky Peavy is an amazing mother of 5 children and two of them have autism.
Her life with autism began back in 1996 before she had any idea what it was. Her son Brandon, now 19, was born full term, by c-section 9lbs. 3ounces. He was bought home in the normal amount of time.. No complications.
"We always knew Brandon was a lil behind as far as his motor skills. His older sisters Kellsee and Taylor reached their milestones at their marked time, but Brandon never did. He didn't make sounds. In fact, he was so quiet that you would forget he was in the house. He never crawled. Arms tucked to the side, my chubby baby would roll wherever he wanted to go around the house. He didn't walk until he was two and a half."
Even after seeing multiple doctors and specialists who said: "Boys are slower than girls." or "He has
a learning disability." It was her mother Carrie who while reading the newspaper one day, saw a little
girl that was doing the same repetitious movements as Brandon.
At this time he was three years old, no verbal skills, rocking back and forth, and they still didn't have a concrete diagnosis. Neky came home from work one evening and her mother placed the paper in front of her and said: "I know what's wrong with Bran, he has Autism."
And so the journey began.
Finding help, therapists, schools, "I almost lost my job because I had to find help for my son and I was ok with that. I just wanted him to get the assistance that he needed. I wanted him to have a chance."
When Cameron was born she noticed signs of autism even as a newborn. There is almost a 10 year difference between Brandon and Cameron. A lot of programs and progress had been made and Cameron was fortunate enough to start as a newborn, receiving developmental therapy until he was three and he transitioned into a General Ed school where he receives both general and special needs curriculum.
Today, both Brandon and Cameron are doing well. Even though they are on opposite ends of the spectrum, they continue to make strides everyday. Brandon is able to take part in his daily chores both at home and at school. He loves music and is very playful. Cameron is a computer whiz.. He types faster than any adult and speaks Spanish fluently and is currently learning French. He is also an Honor Roll student.
Her advice to families
"Get SUPPORT!! You will need it.. from friends, family members and, support groups, and GOD!! If it wasn't for those things, I would probably be in a corner in the fetal position. It has been the biggest staple in my life. Especially now that Brandon is transitioning into adulthood, just trying to figure out the next steps is a challenge, but I'm not giving up. If you know of families that are affected by autism, please SUPPORT them. Your love, kind words, and gestures are needed.
Deanna Rayside's baby girl Demi was fine before her first birthday
Demi reached all her milestones. She was bright and full of life. Her smile brightened up the day. She said the adequate amount of words for her age and tried to walk.
Her birthday party was a beautiful August day. Everything was perfect accept Demi was acting differently. She was very irritable. She was not the happy baby that Deanna knew. She did not make eye contact or respond to her name.
A few weeks prior to her birthday, Deanna noticed that Demi was not responding the way she had been
and she was making minimal eye contact. She also began to be fixated on one particular object or
her fingers.
"I have worked with individuals with disabilities for so many years, so I could not help but to make my own assessments. I knew these behaviors were consistent with Autism. I made excuses, but I knew in my heart something was different. I knew for certain that something was not right."
Autism through a mother's eyes can be scary and unpredictable.
"You worry about this cruel society we live in. You worry about who will care for your child if something happens to you. It breaks my heart to hear about sad stories like Avonte Oquendo and many children affected by autism that get bullied, or get injured and die because they don’t understand the concepts of fear and safety. I worry when I think of Demi's future without me. I worry about someone mistreating her and her not being able to express herself to me. My daughter’s diagnosis of autism has given me the desire to gain more knowledge about the disorder. It is essential to my life to be aware and educated about autism."
Sarah McCall Brown has taken care of her grandson since he was 3
Sarah is the primary caregiver of her grandson Anthony who is 20 years old no. She's never received any medical assistance for him, because her insurance won't cover him. Organizations like the Mental Health and Austim Insurance Project was formed when parents came together and realized that their health plans were providing few, if any, services for our children with ASDs. Their mission is to assist families with children with autism spectrum disorders (and other mental health conditions) to obtain medically necessary treatments through their health plans, so that they can ultimately reach their full potential.
But the funds are not easy to get since there are many families in need.
Sarah is concerned about her own health issues now and if there will be someone to care for Anthony as she's getting older.
She wants people to know
"Children and adults with ASD are harmless, and it is different stages of autism and behavioral disorder. No two people are alike. I'm learning different things everyday."
For more information about Autism and organizations in your area, contact the National Autism Association