When doctors diagnosed Charlie Creedon with autism about 13 years ago, he was the 1 in 10,000.
Charlie was a late talker at 16 months, then lost his words by 18 months. He stopped playing pattycake and waving bye.
"I knew something wasn’t right, but it never occurred to me that he would have a disability," Creedon says. Doctors blamed her for doting on Charlie too much.
Autism was considered such a devastating diagnosis that experts delayed telling the Creedons and later a speech therapist lit into his mom, AnnMarie, telling her to just accept that Charlie was mentally retarded and would never speak.
Creedon, of St. Charles, refused to believe it. "I’m going to have dreams for him because if I don’t, who’s going to?"
Creedon remembers feeling totally inadequate as a mom. "I just remember not knowing what to do, I was so lost."
So she started a support group and sought training so she could help Charlie when he wasn’t in therapy or school.
But when she began hearing Charlie was spending more time in the school hallway than the classroom, Creedon says she prayed for a miracle to help him.
"It’s like slamming your head against a brick wall every day. You have that sense of urgency because you have one life to live and your child has one to live and you don’t want to make any mistakes," she says.
That’s when she hooked up with the mom who eventually started Giant Steps, a school for kids with autism. Charlie was one of the first 10 students.
Now 16, Charlie still has trouble communicating, but is a self-taught artist who takes pretty good care of himself and loves his three younger sisters and younger brother.
Creedon’s hope is for Charlie to be independent, but he has a history of escaping from the house, a constant worry.
"I’m afraid of getting a phone call saying Charlie’s gone and never seeing him again," she says.
Despite her worries, she doesn’t pray for a cure.
"I try to be realistic that this is a lifelong thing and if by some miracle, it goes away, that’s fine, but I need to live now," she says.
Still, one of Charlie’s favorite song, "Out There," from "The Hunchback of Notre Dame," makes her wonder what hides inside him.
"All my life I wonder how it feels to pass a day, not above them, but part of them."
Her sadness, mixed with a take-it-in-stride humor, comes because Charlie can’t tell her.
Let us plan your weekend with the best family events and activities in Chicagoland.
Start the week right with deals, prizes, parent life hacks and more delivered straight to your inbox.
Need last-minute ideas for a weekend of family fun? No worries. We've got you.
Get the inside scoop on the people, places and things we are loving right now.
Resources, tips, inspiration and more for parents of children with special needs.
Score exclusive offers from our fabulous advertisers.