Doctors told Michele Abraham-Montgomery that her son would never walk, talk or be able to go to the bathroom by himself. They said he had reactive detachment disorder, meaning his behavior was a reaction to her detachment from him.
“You’ve got to be kidding me,” Michele recalled telling the doctors. “It’s my fault that my child can’t talk?”
She refused to accept that diagnosis. It wasn’t until her son Khylil turned 6 years old that he was properly diagnosed as autistic.
“I didn’t know what that meant, and because it was the 90s, they really didn’t know either,” Michele said.
So she had to learn how to get the services that Khylil needed. She took a leave of absence without pay from her school district job to go on welfare and care for her son while also educating herself on dealing with the disorder.
“I never want another mom or dad to feel as lonely as I did,” Michele said.
At 18 years old, Khylil graduated with his peers from the Girard Academic Music Program with a 3.7 grade point average. This year he’ll graduate from the Community College of Philadelphia.
“I remember thinking God, why does it have to be so hard,” Michele said. “But now I know that [God] was preparing me for today when I can help other families going through the same struggles.”
Michele welcomed those families to the Autism Awareness Community Open House earlier this week at the grand opening of Jaden’s Voice West Philadelphia office at 5548 Chestnut Street. Partnering with Councilman Derek Green, Jaden’s Voice founder Terri Matthews hosted the event as part of April being Autism Awareness month.
“We want autism awareness to be just like breast cancer,” Matthews said. “I want to see football players running with blue on, not just pink.”
About 1 in 68 children has been identified with autism spectrum disorder, according to estimates from the CDC’s Autism and Developmental Disabilities Monitoring Network. In Philadelphia, 2,142 individuals with autism spectrum disorder were identified. People with autism often have problems with social, emotional, and communication skills.
“We want to not only advocate for our families but also educate and empower them so they can speak up for themselves,” said Matthews, whose son Jaden was 2 and a half years old when he was diagnosed. “He lost his voice, so I became his voice. And now we’re all the voices of our children.”
Matthews came across Khylil during a hearing for individuals with intellectual disabilities. After listening to him share his story, Matthews watched Khylil text his mother, ‘We did it and it’s because of you.’ Tears ran down her face as she told him to call his mother so she could take the phone and say, ‘I know you don’t know me, but I love your son and when my son Jaden grows up, I want him to be just like Khylil.”
That inspired Michele to join Jaden’s Voice where she serves as a case advocate, interacting as a first line representative with individuals and families impacted by autism.
“As a community of families with autism, we have to strengthen each other,” Michele said. “It’s very intimidating to sit at a table with someone with three letters to five letters behind their name. Well, I don’t care if they have a hundred letters because M-O-M and D-A-D are the most important.”
Jaden’s Voice provides iPads preloaded with applications that help families speak with their children and teach them fundamentals such as colors and numbers. Matthews said that Apple representatives come in and teach the parents how to use an iPad as if they know nothing about it.
“We need to train people so they’re accommodating and understand how our families are impacted,” Matthews said.
Jaden’s Voice also helps parents manage the financial burdens of raising a child on the autism spectrum. With the average additional cost estimated to be $50,000 per year, many low-income families can’t afford to balance their child’s special needs with daily necessities.
Brian Higgins, constituent services representative for Councilman Allan Domb, was at the open house pushing attendees to file for earned income tax credits before the April 18 deadline. Last year, 40,000 eligible families in Philadelphia left $100 million unclaimed.
“Think about a family receiving a check for $16,500,” Higgins said. “That’s a difference maker for someone living in poverty.”
In addition to educating and assisting families, Jaden’s Voice hosts a web-based business certification and membership program listing vendors whose products, services and locations have been certified as making living with autism easier and more dignified. The organization also supports medical research conducted at the A.J. Drexel Autism Institute at Drexel University.
But it comes with a price. Jaden’s Voice serviced about 1,300 families in 2015. The iPad applications alone cost $250 each.
“We need people to donate time, effort and most importantly, money,” Matthews said.
State Representative Vanessa Lowery Brown also attended the open house, throwing her support behind Green and Matthews’ initiative while sharing her own story of raising a child suffering from learning differences.
“I remember what it was like being a single mom, surviving domestic violence, trying to keep the lights on in my house, trying to keep myself and my family safe, and then they put me at a table with all of these experts,” Brown said. “They’re telling me what my son needs and I know they’re not telling me the right thing because my son needs more than what they’re willing to give.”
Councilman Green will be holding hearings in front of City Council on April 21 and April 22 at 2 p.m. to discuss the Philadelphia Autism Project started by former Councilman Dennis O’Brien. The project gathers representatives from different local organizations to create a one-stop resource for families with an autistic child to get information on daycare, dental care, occupational therapy, speech therapy and more resources.
“Sometimes when parents get the diagnosis, they go through a period of denial or grief,” said Green, whose 15-year-old son Julian is on the autism spectrum. “You really can’t dwell. You have to be an active advocate and get intervention as early as possible so it will help your child now and in the future.”