It is insanely difficult to raise and care for an Autistic child. It puts tremendous financial, physical and emotional strain on parents and siblings alike. I thank God every day that my son has both my wife and I, and his brothers to love and help him. Some parents are simply not that fortunate. Support comes in many forms: family members, financial stability, educational, and governmental to name but a few.
What happens when family members aren’t around, or marriages end in divorce? What happens when you can only barely live paycheck to paycheck? What happens when your child ‘ages out’ of his school setting? What happens when your town, county or state starts cutting services your child so desperately needs?
The fight for the needs of those families on the Autism Spectrum reaches into many arenas. By now you may have been asked to place a ribbon magnet on your car, or have been asked to participate in or support an Autism walk. Those are good starts and are greatly appreciated.
In the future you may receive emails asking you to email your state legislators regarding important matters about insurance reforms that directly impact the Autism community. Emails from services like Autism Action Network (A-Champ), Autism Votes, and others, send out mass mailings to state and local legislators on behalf of those concerned, in order to explain ‘our side of the story’ . It is a very direct and simple means to connect these legislators to us, their constituents, but more importantly a means for these legislators to understand the very real-world concerns of the Autistic community. Believe it or not, legislators have replied back to me, so the few minutes I spent adding my name and address to a (an editable) form letter was well worth it.
Families in the Autism Spectrum would like to believe that our local, state and federal governments all will have our children’s best interest at heart. That simply isn’t the case; as you may gather from this article and video, or from other sites, many states don’t even cover many treatments (ABA, OT/PT, Speech, etc.) unless it is offered within the school setting. Autism needs more voices like Robert Wright of Autism Speaks, Holly Robinson Peete, Toni Braxton and Jenny McCarthy simply because they attract more people to examine the struggles of families on the Spectrum and shine a light on many of the needs of the Autism community. The Autism community needs You.
World Autism Awareness Day is April 2nd–spread the word.
Please click on the link to view the video:
By Matt Soergel
Don’t judge her by her house, she begs. This isn’t her. This isn’t the way she would live, if she had a choice.
The broken windows covered with cardboard. The huge cracks in the front door. The holes every few feet in the drywall. The worn carpeting and dingy paint.
Michele Sheffield apologizes. She doesn’t have the money or the time to fix any of that.
That goes to her son, Harley, who’s bearded, 20 years old, 6-foot-2 and 252 pounds, whose diapers she changes every day.
The shattered windows, the damaged front door, the battered drywall — he did all that.
Harley is profoundly autistic, with a vocabulary of perhaps 200 words. Much of the time he’s calm, as he was at McDonald’s after school, eating fries and a burger, smearing ketchupy hands on his Georgia Bulldogs shirt.
But by the time he gets to his Westside house, gets out of his mom’s Ford Explorer, that calm is gone. A reporter and photographer are there, breaking his routine. He begins to pull at his throat, hooting like an Indian in an old Western movie. He slaps his face, again and again. He bites his fingers, jumps up and down.
He readily takes some Thorazine, but it’s going to take a while to work. He flops on his mother’s bed, sobbing and shouting. He tries to tip over the TV. He breaks his mom’s jewelry box, knocks a hinge off a door in the entertainment center. He walks up to his mom, shows her the scratches he carved on his forearms. “Ow-ey,” he says. “Ow-wey.”
Michele Sheffield looks up. Oh God, what is she going to do with Harley?
‘I’m done for’
All parents of children with autism and developmental disabilities wonder who will care for their children as they get older. Once they age out of school, there isn’t much of a support structure for them, and there are always concerns about how much the state will be able to help.
Sheffield despairs. She’s 51, a single divorced mother with three other children, though only 15-year-old Caitlyn and Harley live at home. She’s always on the edge of financial collapse — maybe the next paycheck she’ll be able to fix the windows — and there aren’t enough hours in the day for her to do what needs to be done.
She struggles for some sense of control over her life and sometimes achieves it: She’s fought diagnoses of depression and post-traumatic stress syndromes. She’s lost 100 pounds in the last few years. And, after her divorce, she was able to find and keep a job, though she had to go part time to take care of Harley.
The people who watched over Harley at home, paid by the state, were untrained and ill-equipped to take care of him, she says.
There’s no money for them anyway, she’s been told.
Odd as it sounds, sometimes she has to laugh at her situation. “I’m tired. I’m done for.”
She chuckles. “I would like for him to go away for the weekend and for me to go have a good stiff drink. To have an adult conversation with someone.”
Harley’s future is uncertain.
For seven years, he did well at the Jericho School in Jacksonville, a private nonprofit for children with autism and other developmental problems.
Angelo Martinez, the school’s executive director, said Harley needed a teacher full time, focused just on him. Tuition for that is $45,000 a year, and a state scholarship program to students such as Harley can’t come close to covering that.
For now, he is able to go to a public school until he’s 22. So weekday mornings she drives from their home west of Interstate 295 to Palm Avenue Exceptional Student Center off Edgewood Avenue, then heads to her job near The Avenues mall for a company that ships out mail for big companies.
At 1:30 p.m., she picks him up and they head home.
With the help of an attorney, she’s trying to find a place for Harley to live, a facility with trained mental and psychological professionals, with state help.
Life with Harley means Sheffield has stepped on a nonstop treadmill of bureaucracy. Insurance companies. The state. The school system. People do want to help, she says. Harley gets $340 a month from federal Supplemental Security Income and another $370 a month from his father’s federal disability payments, she said. But she could speak for hours on the struggles and the sheer drudgery of getting and paying for that help.
Ven Sequenzia, president of the Autism Society of Florida, said that during the most recent legislative session, the state increased money for the Agency for Persons with Disabilities from about $810 million to $877 million. Good news, he said, but that’s less than it was in the early 1990s, and it has to take care of thousands more people.
Though about 30,000 people are helped under a Medicaid waiver program (Harley is one of them), there’s a waiting list of 20,000, Sequenzia says.
“Realistically, a lot of these kids don’t end up getting anywhere near what they need. The way I feel, the way I look at it, the only way the state responds is to litigation. These are the most vulnerable people in society, and we should be taking care of them.”
It’s not just Harley
Caitlyn Sheffield doesn’t invite many friends over to her house of broken windows and broken drywall. And sometimes she gets teased because of her brother.
“If someone makes a joke about autism, I really go off on them,” she says.
Caitlyn, a competitive cheerleader, says Harley is calmer around her. “I may be a lot smaller than him, but I can handle him,” she says.
Her mother agrees. “He knows what his boundaries are. He really doesn’t mess with her.”
Even so, life isn’t easy for her, Sheffield says. “I feel horrible for Caitlyn. She’s always had to endure this, and now she’s got a little boyfriend and she doesn’t even want to let him into the house.”
Along with his profound autism, Harley has numerous medical problems, including bipolar disorder and attention-deficit hyperactivity disorder.
At 3, he would be up for 48 hours in a row, sometimes running in place in his crib. At 4, his autism was diagnosed.
Puberty came late, and with it came increasing aggression, more acting out.
He’s as big as an NFL linebacker now. He’s broken four car windshields, and he’s hit his mother. “He hits hard,” she says.
Representatives from the state Department of Children and Families have visited the house twice, she says, and she knows that speaking publicly may earn another visit.
“Yes, I am afraid they will come here and take him, claim he’s a danger to me and everybody else. A danger? I don’t really think so,” says Sheffield.
But she wants people to know that it’s not just her going through this.
“This is very widespread. The only thing is, I’m willing to talk about it and hopefully not let someone else’s family suffer through this,” she says.
Sheffield speaks loudly, and quickly. She apologizes for that, too. It’s the stress, the rush of life, the tension. As Harley stands over her, moaning, she says she has no choice but to just keep trying.
“He’s part of our family. I’m the type of person, I don’t want to give up. I don’t feel like it’s a lost cause,” she says. “To me, he’s still my child, if that makes any sense.”