This column was originally published as part of my “From Where I Sit” series at in Towson Times.
I couldn’t stop the tears.
“You don’t need to bring Madison today,” the manager said simply. “We’ll do a telephone interview with you.”
“Really?” I whispered as my eyes brimmed over.
“You’ll receive a call shortly.”
I swallowed hard, failing to stifle my emotions.
“Thank you so much,” I gushed. “You’ve saved my daughter from a very difficult experience. I am so grateful.”
I hung up the phone, dazed at my good fortune. Madison could now stay on schedule, a critical part of her highly-structured life that keeps her engaged and free of worrisome aggressive behaviors.
Madison has autism. With a developmental age around 3 years old, she requires constant supervision. Although she is generally happy and compliant, dark clouds of anxiety can become volatile tantrums. Crowds, waiting, and unstructured time often provoke them.
My journey with Madison has been the adventure of a lifetime as we have learned and loved through tough issues. The most dramatic, though, has been the five months since her 18th birthday.
I’d been warned. For years, I’d received information about the transition process beyond school for children with special needs. But its alphabet soup intimidated me: DDA, SSI, SSDI, DAC, DORS, etc.
However, one flyer shocked me into action. Seven services filled a text box captioned, “This is what your child is entitled to from birth to age 21.” A second box’s caption read, “This is what your child is entitled to after 21.”
It was empty.
With that haunting thought, I attended a Baltimore County Community Forum to decode the alphabet, put faces with agencies, and meet the Forum coordinator, Mary Scott. Overwhelmed, but better informed, I learned what adult services were available for Madison and started the paperwork and interviews.
Then the hurtful words began.
“If approved, she must open a bank account,” one examiner directed.
“She can’t handle that,” I tried to explain.
“Then have her sign her name and you deposit it,” she instructed.
“But she can’t write,” again I tried to explain.
“Really?”
“She can’t read either,” I clarified.
“Oh, so she is illiterate,” she said as if enlightened.
The word stung. Never had my precious child been called illiterate. The uncaring connotation hit me hard.
“But she’s attended specialized schools since she was 3…with home-based therapies…she just can’t grasp it…” I stammered as her stoic typing droned on.
“So you are alleging that your child has a disability,” she continued.
“Alleging?” I echoed, bewildered.
“I see no recent IQ score.”
“IQ? I have sixteen years of school assessments…medical records…she was diagnosed early….”
“We may determine that one of our psychologists needs to test her IQ,” she interrupted. “You’ll incur no cost.”
Indeed, Madison needed an IQ assessment. In fifteen seconds, their psychologist grasped the situation, but valiantly attempted to test her.
“So what is her IQ?” I asked.
“She cannot be tested,” she replied. “That says enough.”
I knew it; but it was still hard to hear. At least she would not have to go through other interviews, I was told.
Then the letter came with a mandatory appointment for Madison in the social security office—where the room is small and waiting time unknown.
For three days, I called, held for operators that never answered, and left unreturned messages. In desperation, I contacted Mary Scott who helped me connect with the Social Security representative I’d met at her Forum.
I emailed him and he called me back. He then contacted the local office, prompting the manager’s call that gave me the good news and released my tears of gratitude.
He had spared my daughter what was sure to be a stress-laden visit.
Unquestionably, life with autism is filled with obstacles. However, it is also filled with good people willing to help—if we take the time to meet them.
Of note: The next Baltimore County Transition Forum is Tuesday, Sept. 21 at Oregon Ridge, 10 a.m. to 1 p.m. For tips on the process, go to www.pathfindersforautism.org/articleItem.aspx?id=196#DDA. Becky is a founding board member for Pathfinders for Autism.
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