A Mother’s Determined Fight to Keep Kennedy Krieger Honest and Protect the Future of Her Autistic Son
by FAITH NELSON
Published: April 17, 2012
Are autistic children becoming a numbers phenomenon for counters and a financial opportunity for Autism authorities? Autistic student Donte Reeves being unceremoniously dropped from the 2012 diploma rolls at Baltimore’s Kennedy Krieger is proof that the near future will demand much more than early identification of these disabilities. Donte’s unfortunate plight is evidence that there is urgent need for more quality institutions for Autism in America.
The new numbers for Autism issued by the Centers for Disease Control are alarming. The bean counters estimate that 1 in every 88 children has been identified with an Autism Spectrum Disorder. The CDC defines Autism Spectrum Disorders (ASD) as a “group of developmental disabilities that can cause significant social, communication and behavioral challenges.” Further that “both genes and the environment play a role in ASDs.” According to the CDC, numbers represent a 23% increase since its last report in 2009.
“The largest increases over time were among Hispanic children (110%) and black children (91%). We suspect that some of this increase is due to greater awareness and better identification among these groups. However, this finding explains only part of the increase over time, as more children are being identified in all groups.”
Childhood cancer, a fearsome scourge, has more encouraging numbers. Should we be afraid? There are roughly 48 million children in the 0-14 age bracket in the US. The American Cancer Society estimates that roughly 1 child out of every 4,000 in that age group will be diagnosed with cancer in 2012. Furthermore, despite the unpredictable nature of the disease, treatment will improve the odds and the quality of life for more than half of those diagnosed. Though it’s not a death sentence, Autism’s growth outstrips the numbers for childhood cancers hands down. Life for a person with autism, at one end of the spectrum, can be relatively easy with the right care and support. At the other end of the spectrum, those suffering severe impairment can live in a seemingly hopeless world.
While this new data raises a red flag for the Maryland mothers I talked to, the more alarming realization is that the country has a long way to go to transform its advocacy for this growing population. For Autism parent and advocate Miriam Machado-Luces, the increased numbers bring up a far greater problem for children with this disorder.
“Here’s where the tire hits the road. These children are growing up. We need to place laser-like focus on the quality of the systems we are putting in place to prepare our loved ones to function in society when we are gone. Do we really understand their uniqueness? Are we serving them?”
Machado-Luces seems to believe the system is failing too many students. She points to the case of Donte Reeves, a student at the respected Kennedy Krieger Institute. The Baltimore Institute is celebrated as a bastion of training for children with special needs and is one of a handful of nationally recognized schools for autistic children.
Kennedy Krieger has a variety of students on the Autism spectrum. Students are placed on either the High School diploma track; where they receive a high school diploma after having met the standards set by state regulations, or the “Certificate of Attendance” track; which is merely a certificate that says they went to school. The future for those of the certificate track is bleak to say the least. According to Machado-Luces, Kennedy Krieger has decided at the 11th hour to disallow Donte’s High School diploma in 2012. She, along with education advocate, Rt. Reverend Vernon Keith Jones, has joined Minnie Reeves, Donte’s grandmother and caretaker, to raise a hue and cry on his behalf with the campaign – #Donte Deserves a Diploma.
Kennedy Krieger has as its mandate “unlocking the potential of individuals with developmental abilities.” But is it a level playing field for students across the board? Experts, conferring with parents, design an Individual Education Plan or IEP tuned to the students’ unique learning style for the duration of high school life. The team also decides which track (diploma or certificate) best suits the child. Throughout it all, the diploma track student sits for the High School Assessments (HSAs) or completes a Bridge Project that is an alternative to sitting for the HSA. Donte continues on the diploma track and is doing well. Minnie Reeves lists his achievements.
“They can’t say he isn’t socialized. He was unanimously elected class president in his junior year. He fulfilled all but one course for the state’s COMAR requirements for the diploma to be awarded. He passed Algebra with flying colors. He is on track to pass that final course of English. At the level he’s working from, he will be done with his Bridge Project by May instead of the rushed deadline the IEP team is trying to force us to accept.”
Kennedy Krieger’s decision has come as a shock. Is America’s leading Autism authority railroading Donte? Minnie Reeves believes Kennedy Krieger has nefarious intentions despite the evidence that Donte is ready to graduate. “The school’s mission to unlock potential is just words. They have already decided that Donte is unable to pass the Bridge Project.” A recent letter from the school’s transition specialist advised her that Donte would be switched from English 12 and Environmental Science to Financial Literacy and Keyboarding.
“Donte doesn’t need these subjects, he already does an efficient job shopping on his own and like the kids born in this computer age, he is tech savvy. He mastered the keyboard in kindergarten. When I have difficulty with my computer at home, he solves it!” Others in the community agree that Kennedy Krieger’s refusal to graduate Donte without the deserved high school diploma is a setback to him achieving career and college readiness.
The experts haven’t gotten it quite right yet. Research shows there are students on the Autism spectrum currently in college who have chosen to remain anonymous due to an inadequate support system at school. A strong support system at home picks up the slack in some cases. Even with this burden, autistic children have gone on to lead fulfilling lives in society.
Minnie Reeves believes Donte, like his peers, has the potential to take on the demands of college. Though there is honor in all jobs, not all autistic children have to work in the hospitality industry. If he has the ability to stay on the academic track then he should be allowed to exercise that choice. Some students with far more complex problems than Donte Reeves have been nurtured and celebrated for their skills. Jazz prodigy Matt Savage and other notables with Autism prove that the frontiers are boundless.
“Donte is a bright young man, who has overcome some amazing odds, and has worked hard for an education at Kennedy Krieger the past 4 years. It is unconscionable how in the 11th hour we are given unacceptable excuses on why he will not be able to graduate.”
“You should hear Donte read Beowulf and analyze the poem. For a young man with those capabilities to be told to drop English 12 for financial planning is bewildering.” With quiet dignity Ms. Reeves reiterates, “my son deserves better, he deserves his diploma.”
If it’s a question of Ethics, Kennedy Krieger has a bit of a dark past. At the very least, the school has certainly missed an opportunity to build on Donte’s strengths in English Language Arts. From the evidence, it is clear that not only is he academically literate, he is technologically literate as well. This is a gross injustice as the school’s negligence now forces him into a potential situation where he can be assessed as needing a remedial course. This would undermine his ability to take on the rigor of a first year college English course. Kennedy Krieger is, knowingly or unknowingly manufacturing what Education researchers identify as a growing problem – college students needing remedial English.
Rt. Reverend Vernon Keith Jones, himself an advocate and counselor with extensive experience in some of the nation’s top notch schools and programs, has evaluated Donte. He sees where Kennedy Krieger, despite its perceived stature, may be guilty of neglect and arrogance. His own informed assessment reveals Donte Reeves to be quite intelligent and compassionate despite the challenge of autism, something atypical of students at that age.
“Donte reports that he’s been called “Slow Pokey Reeves” by one of his teachers. This educator has been entrusted with the task to facilitate his academic, social and emotional maturity. Imagine what ridicule by this teacher does to a child’s self–esteem. The problem is deeper than it appears. It is the tendency of the American collective to categorize young Black males in destructive ways. It is far worse when some young men, especially those with disabilities are unable to articulate their feelings, hopes and dreams in a way the mainstream expects. Then the tendency is for the power structure to confine those valuable persons to a pre-constructed box instead of allowing them to thrive.”
Minnie Reeves is afraid that the school doesn’t care about her son’s wellbeing and wants to keep Donte for the 2012-2013 school year for the sole purpose of earning more government funding. It’s double the cost of a public school to go to Kennedy Krieger. She has cause to worry. Kennedy Krieger doesn’t publish its fees. But ten years ago, it cost the state and the county roughly $54,000.00 per year to send each student to the school. Imagine the costs now.
Armed with the facts, Minnie Reeves has decided to free Donte from the confines in which he’s been placed by Kennedy Krieger’s action. The launch of the #Donte Deserves a Diploma campaign is just the beginning of her battle and with a mother’s surety she is fighting to win.