Encouraging positive outcomes for chronically, acutely, mentally or physically ill or pregnant students, their families and local education systems
Parents of Students with Health Needs
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Maryland Gazette Front Page
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Maryland Community News Published: Tuesday, December 10, 2013
Mothers of chronically ill students form new group to help others by Jamie Anfenson-Comeau Staff writer
When Beth McCracken-Harness’ son developed a chronic illness, she struggled to keep his education going for the year-and-a-half he missed school while undergoing a barrage of tests and treatments. McCracken-Harness’ son suffers from Postural Orthostatic Tachycardia Syndrome, or POTS, a disorder that reduces blood flow to parts of the body when the individual is sitting or standing. “It was really long, really hard and really very lonely,” said McCracken-Harness, who lives in Cheverly.
Now, she and Lisa Brooks-Wilkins of Capitol Heights, parent of a child with urea cycle disorder, a condition disrupting the body’s ability to process protein, want to help make the process smoother for other parents and guardians facing similar challenges. They have formed an advocacy group called Prince George’s Parents of Ill or Pregnant Students.
“It’s an underdeveloped and underserved group. They’re generally not taking part in their local PTAs, because they’re usually caring for a sick child,” McCracken-Harness said. “I think it can be very helpful to have a community to support you.”
McCracken-Harness said the group’s website, www.pgpips.org, has information and links for parents, and is a clearinghouse for ideas and advice. She said group members can accompany other parents when they meet with school officials. (NOTE: THIS WEBSITE HAS NOW CHANGED to www.parentsofstudentswithhealthneeds.org)
“It can be really hard sometimes for a parent, especially one going alone. You’re surrounded by all these professionals in suits, and then there’s little old you,” McCracken-Harness said. “We can provide support.” McCracken-Harness said there are more than 500 students in Home and Hospital Teaching, the public county schools division that provides instructional services to homebound and hospitalized students.
For county students who have a documented illness that keeps them out of school for an extended period of time, a teacher is sent to the hospital or home, usually to provide six hours of weekly instruction, said Barbara Nelson-Lewter, a Home and Hospital Teaching coordinator. “It may not sound like a lot, but when you’re one-on-one, it’s rather intense,” she said. Alternately, students may receive online instruction if they have a computer at home, Nelson-Lewter said.
McCracken-Harness said the group also can provide respite care to struggling parents, as well as advocate for more funding, and logistical and tech support for the Home and Hospital Teaching program. “It’s important to have a group advocate for these types of issues and needs,” McCracken-Harness said.
Julie Coleman of Riverdale Park was one of a dozen people who attended PGPIPS’ inaugural meeting Dec. 4 at Kenmoor Middle School in Landover. Her 8-year-old son has cystic fibrosis and has been in the hospital 43 times. “When I first found out about this, I was really excited, because I hadn’t found any other local groups for parents,” Coleman said. “His school is just not familiar with his condition, so we’ve had a lot of problems with that.”
McCracken-Harness said she hopes that PGPIPS can provide a community for parents who may feel like they are struggling alone. (NOTE: PGPIPS has changed its name to Prince George's County Parents of Students with Health Needs.) We want to help the school system better understand the needs of students with rare disorders,” Brooks-Wilkins said.
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