Jennifer Gallucci had been afraid to find out, but last month, she finally got her answer: Her 2-year-old son, Jude, does not show any signs of autism.
It was a small but important victory.
Mrs. Gallucci and her husband, Bruno, who live in the tiny community of Burgettstown in Washington County, already have two sons with different forms of autism, as well as an older son with an ADHD diagnosis.
The Galluccis have four sons, two of whom have an Autism Spectrum diagnosis. They are awaiting definitive results on a third. (Video by Julia Rendleman; 10/7/2013).
Click on this link for video: http://bcove.me/op9t91zu
It’s not that their lives would have been shattered by having another child with autism, they said, but in a schedule already packed with therapy sessions, visiting aides and special diets, the conclusion by a psychologist at the Autism Center of Pittsburgh was a relief.
The examination showed that Jude has a speech delay but otherwise is “neurologically typical,” Mrs. Gallucci said. The psychologist “said he didn’t see anything indicating autism, and I said, ‘I like that. Let’s go home.’ ”
Her son Joe, 10, has moderate autism, and only began to speak in full sentences this year. Her next youngest, 8-year-old John, has Asperger’s syndrome, a higher-functioning form of autism, and also has some problems with aggression.
Because of that history, it made sense for the Galluccis to enroll Jude at the University of Pittsburgh’s Infant Communication Lab, which is part of a national network of centers studying children who have an older sibling with autism.
In 2011, the Pitt center and several others published a study that showed that nearly 20 percent of those younger children ended up with autism themselves — far higher than the estimated 1.1 percent rate in the general population.
The study suggests that autism has a strong inherited component, but it doesn’t rule out the possibility that some families might have experienced a common environmental exposure.
As with Jill Escher in California (see related story), Mrs. Gallucci’s mother took fertility drugs when she was pregnant with Jennifer. But whether that has anything to do with her children’s autism, or whether her grandfathers being coal miners might explain it, she doesn’t know.
“Now all of a sudden autism is snowballing, and what is it?” asked Mr. Gallucci, a plumber who is currently a stay-at-home dad. “Is it toxicity in everything nowadays? Is it vaccinations? Is it food, water? There are so many different variables it’s mind-boggling.”
Even if the driving force for the Gallucci family’s autism is genetic, scientists do not yet have the ability to pinpoint a specific set of genes that are at fault in most cases of the disorder. Scott Selleck, a geneticist at Penn State University, said there are many different forms of autism, and hundreds of genes have been implicated.
“One could make the argument that to talk about a single entity called autism is a bit of a misnomer,” he said. “It is quite likely that autism is a disorder that has 2,000 genes, so what do we call it now?”
The Galluccis see that variation within their own family.
After their oldest son, James, 13, was born, Mrs. Gallucci remembered how active and verbal he was. So when Joe was born three years later, her first impression was that in contrast to James, “Joe didn’t need constant attention and he hit all of his milestones except for his speech, and I just figured he was quiet. And after Jim talking so much I was happy he was quiet.”
In preschool, though, it was obvious Joe had behavior probleMrs. School officials recommended Mrs. Gallucci take him to Children’s Hospital of Pittsburgh of UPMC and “at that point I was angry, and I thought, ‘I’ll take him just to prove you’re wrong.’ ”
After testing Joe, Mrs. Gallucci said, “the doctor left the room, and she came back in and handed me a book and said, ‘Your child’s autistic,’ and that was it. I shut down right then. I had no idea what she was talking about. I don’t think I’d even seen ‘Rain Man’ [the 1988 film starring Dustin Hoffman as an autistic man] at that point.
“Then I cried about it for two to three months.”
Soon, her pain turned to anger again, and she vowed that “if you’re going to give my child a label, and he’s going to be stereotyped and looked down upon, then I’m going to make sure he’s going to get all the good things that come with it.”
That meant signing up for therapy appointments, special school programs and enrichment activities, a jam-packed life that only became more crowded after John was born in 2005 and eventually got his own autism diagnosis.
Unlike Joe, who still speaks haltingly and has just begun to read, John is articulate, high-energy and fascinated by computer games, especially his favorite, Minecraft. He also has behavior problems at school, Mrs. Gallucci said.
“He’s much better in school during structured time; during unstructured time is when I get the phone calls. John has done many, many things in school. John is the bully; he doesn’t get bullied. John has started food fights. John has thrown wet paper towels all over the bathrooMrs. John is very loud in the halls. Just mischievous stuff, but now it’s getting to be a big deal.”
The Galluccis found out a couple of years ago that John has a rare genetic duplication on part of his 17th chromosome, one that has been associated with intellectual delays and autism.
Both boys get in-home visits from therapeutic support staff, known as TSS aides, who spend time helping with daily activities, and from behavioral specialist consultant aides, who can help write treatment plans and go with them to doctors’ appointments, as well as from specialized therapists. Altogether, these visits, paid for by Medical Assistance, take up about 11 hours a week.
The Galluccis also have enrolled both boys in numerous outside prograMrs. One of the best, she said, has been the equine therapy sessions Joe has participated in at Horses with Hope, a riding program for special needs children based in South Park and Washington, Pa.
“Within two months of starting there,” Mrs. Gallucci said, “Joe was flying through his occupational therapies. His balance increased, his throwing aim, everything just went through the roof. When he’s on the horse, he can be having a very bad week, but something about that horse walking calms him down and he’s good to go.”
Besides managing the family’s schedule, Mrs. Gallucci works at an office involved in land purchases for shale gas development. Mr. Gallucci, who recently went back to school for training in cybersecurity, is still looking for work.
What does the future hold?
“I want to see all four of my children with college-educated jobs, living in their own houses with their own wives and children and driving their own cars,” Mrs. Gallucci said without hesitation. “I’m pushing for that. The only one I worry about getting to that goal is Joe. Will he get there? I don’t know — but I’m hoping for that.
“Because eventually I’m going to die. Either Joe’s going to stand on his own two feet, or one of his brothers will have to help him, and what are their wives going to say? Are they going to want to deal with that? I don’t know.”
In the meantime, the Galluccis said, they make sure the boys are well cared for and not in the least hidden away.
“We don’t have a lot,” Bruno said, “but these kids are all fed very well, they play, they are in their community. Right now, we live for them.”
“We don’t have time to sit around and say ‘Oh, autism is so horrible’ and you should feel bad for me,” Mrs. Gallucci added. “I know a lot of people who do that, who sit and cry about how horrible everything is.
“OK, yeah, it’s bad — let’s move on from that.”
When Jonathan Izak looks at AutisMate, he only wishes something similar had existed when his brother was younger.
The iPad app, which Izak and colleagues have spent the last 18 months creating, is designed for autistic children — kids like Izak’s brother.
“I think it definitely would have helped him (with his) acquisition of language,” Izak said.
Some apps, such as Proloquo2go, replicate a staple of the autism field — the sentence builder that kids can use to build sentences using symbols and basic concepts such as “I want.” Such devices have long existed as standalone machines that can cost thousands of dollars. Other autism apps mimic the kinds of flash cards that can be used to visually represent things that one has trouble verbalizing.
AutisMate aims to handle those kinds of functions, but doesn’t stop there. One of its key features is designed to help kids even before they are able to piece together sentences that explain their desires. The scene-builder module uses pictures of the child’s own settings, such as their bedroom, work room, living room and kitchen.
Support for GPS allows the child to see one set of rooms, for example, at home and another set of scenes when at school.
The scene builder can also incorporate a variety of licensed videos to help with other settings, such as visits to the dentist or barber shop, as well as to help educate on concepts such as how to make it clear when they need a break.
Click this link to view the video: http://video.allthingsd.com/video/using-the-ipad-to-help-autistic-kids-learn/3D76C0B7-2EB7-473A-9C2C-FFAE818B299C
Another component breaks tasks up into different components and time frames, tying completing the activity to a reward, such as a cookie.
At $150, AutisMate is certainly pricier than the average app, but it’s in the same ballpark as Proloquo2go and other comprehensive software for those with special needs.
“It’s generally in the range of apps out there,” Izak said. That said, there are a range of other apps including free and low-cost apps for specific functions. There’s even an app,Autism Apps, that is a guide to other autism-related mobile apps.
Izak left his role at the University of Pennsylvania’s linguistics department to start work on AutisMate. Initially, he did the hands-on programming, but now he serves as CEO of the 10-person New York startup behind the app.
Eventually, Izak hopes to build his tiny company into a larger educational software firm.
“Really, the vision when I started this whole thing was pretty broad — to use modern technology to help those with a variety of special needs,” Izak said. “I started with autism because it was very close to home, and close to my heart.”
We walk for many reasons, and each one of them has a name, and each one is an inspiration to us all. Hopefully when we walk or run or raise awareness for Autism, we inspire someone else to do the same. -Ed
Elif Cagin, 28, was inspired to become a special needs educator through her experiences as a sibling to her brother with autism, and will walk in support of the autism community during Orange County Walk Now for Autism Speaks on Saturday, Oct. 13.
Being a big sister has always been special to resident Elif Cagin, 28, who was inspired to become a special needs educator through her experiences as a sibling to her brother with autism.
To honor him, she will walk in support of the autism community during Orange County Walk Now for Autism Speaks on Saturday, Oct. 13 .
Her brother, 23, was diagnosed with autism at age three. He is currently enrolled at Pasadena City College.
“It is easy to talk about the work I do at a private school for students with special needs. That is my job. It is much harder to open up about my brother with special needs. I have a younger brother who is affected by this complex social, verbal and neurological disorder called autism,” Cagin said.
According to the U.S. Centers for Disease Control, autism now affects about 1 in every 88 American children, including 1 in 54 boys. Autism is a complex condition that affects a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges.
While her brother is doing well now and is successfully attending a city college, it wasn’t always that way and there were times that were very hard.
“Nobody can really know what it is like to be a sibling to a person with a disability unless they have walked in those shoes. And with a diagnosis rate at 1:88 children, that means there are a lot of families living with autism every day in addition to my own family,” she said. “There are a lot of birthday parties that families don’t go to because of how an affected child’s social challenges can manifest themselves in peer settings, movies that families don’t see because of sensory issues that arise in a dark, loud confined space, and new clothing items that don’t get acquired because every last family resource is spent trying to provide treatments and coping mechanisms for our kiddos. I see it in the families I teach and I lived it every day growing up.”
Cagin loves her brother and his influence on her life completely informed and inspired her career.
Today, she is a special needs educator at New Vista School, a grade 6-12+ progressive educational center that provides a safe, structured environment serving the needs of students with Asperger Syndrome, high-functioning Autism, and language learning disabilities.
“I am proud of the incredible, caring, and compassionate work we do with this all-too-easily ignored population and I remind myself that my students may be someone’s brother too, and that it is my duty to help them the way that others helped our family and my brother when he was younger,” she said.
She will walk in support of her school, her brother and the Orange County autism community on Saturday.
“In addition, this year, I am honored to be chair of the 8000-person event, which supports Autism Speaks – the nation’s largest autism advocacy organization, dedicated to increasing awareness of autism spectrum disorders, funding research into the causes, prevention and treatments for autism, and advocating for the needs of individuals with autism and their families,” she said.
Lexi Pereira and her brother, Spencer, raised money with their homemade lemonade to benefit Gateways Community Services in Nashua.
My name is Lexi and I am 9 years old. One morning I told my mom that I wanted to do a lemonade stand for charity. We talked about the different kinds of charities. Since my younger sister, Ellie, has autism, and I have Asperger’s Syndrome which is a kind of mild autism, I thought I should give to a charity that helps other kids with autism.
So we bought some supplies. My mom, brother, and I started to make some lemonade. We made signs and went outside to start selling. I soon had my first customer.
I sold my lemonade in the afternoons and evenings from June until the middle of July. Some days I had more customers than others. People were very generous. Some people came back every day and one man even gave me $20!
At the end, I was so close to $100 that my dad said he would donate the last $3. Then, I had $100 to donate. I decided to give that money to Gateways Community Services in Nashua which is the place where my sister’s therapists work. They do a lot for kids with autism, and I wanted to give back to them.
Thank you, people of Merrimack. I couldn’t have done it without you.
I want to try something here. I want the opportunity to brag about the other kids in our lives: the Siblings on the Spectrum, who truly are ‘Autism Heros’. As Parents on the Spectrum, a lot of our time revolves around our Autistic child. Now it’s time to shine a light on our other kids, who do so much, and mean so much to our families.
If you have a story, picture, video, or blog post about your Siblings on the Spectrum, please send it to me as a comment to this post, or if you are on Twitter, Tweet or DM me (@1andOnlyJustEd) with your brag, using the hashtag #AutismHeros. If you follow this blog on Facebook (Facebook.com/BeyondAutismAwareness) you can send your stuff to me that way. I will gladly publish a new post using your story, picture or video, using #AutismHeros as the title. (Please don’t use Pingback to send me your stuff. Thanks.)
All our kids are important, and they should be recognized. #AutismHeros
Nick, Mike and Tom: my three goofballs and each other’s best friends. Mike looks up to Nick and Tom for different things, and they both give him things that only brothers can. I am proud of both of them!!