Stroke Smart Magazine
September/October 2008
FEATURE
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Kids and Stroke:What It’s Like
By Rowena Alegrķa
Sean Grady turned two in February. Weeks later, it was determined he’d had a stroke before he was born. His whole life has been a challenge.
At six months, he wasn’t lifting his head or pushing up. He didn’t crawl until 14 months. At 17 months old, he said only about five words. He walked on his knees for a long time before he had the strength to stand. But he was lucky. His mother, Erin Grady, had pushed when doctors blamed his delays on his being born six weeks early.
She credits therapy with helping Sean do as well as he is now, although he still has difficulties. Sean has sensory issues and doesn’t like bubbles on his skin, making bath time a challenge. He also has seizures, during which he “spaces out, his eyes blink” and you can’t get his attention. He attends four therapy sessions a week, including one in a pool. “There’s a huge difference in water,” his mother says. “He’ll use both sides more willingly.”
Brendon Spear is also two, with weakness on his right side caused by a stroke in utero. He, too, was delayed physically but may yet develop to where people wouldn’t notice his unequal movement.
Despite all the testing, the therapy, the challenges, “He comes through like a champ,” mom Jessica Spear says.
But language has posed problems for Brendon. Like many adults with stroke, he has struggled with aphasia, the partial loss of the ability to speak or understand speech as a result of brain damage. For a while, he could point to pictures and make sounds of the animals. But he couldn’t identify them. “He knew what it was, but it wouldn’t come out of his mouth,”
his mom says.
When he gets a lot on his mind, he stutters, too. And then gets frustrated.
“He would hit himself. He’d yell at himself to stop,” his mother says, explaining that the messages from the brain would not route to the mouth.
Although doctors say he probably won’t be able to talk until he’s five, it bothers him. Only once did his mom say she saw his spirit quashed. He was trying to talk to a group of kids he didn’t know, and they didn’t understand what he was trying to say. “They looked at him
like he was stupid. [He] was not making sense to them. He walked away and isolated himself.” Spear wishes that doctors would understand that saying he will be OK when he is 20 doesn’t help now.
Michelle Ballasiotes, at 10, is already experienced with the media and with public speaking. She spoke about stroke on National Lobby Day in Washington, D.C., along with her mother, Mary Kay Ballasiotes.
Michelle calls herself “one of the lucky people.” Though a doctor told her mom that her daughter would never walk or talk, Michelle does well in school. She loves playing soccer and wants to be an occupational therapist when she grows up.
She says she doesn’t like that she had a stroke. “I don’t want people to think I can’t do something just because I wear a brace or I have a weak right side.”
She’s also grateful that her mother runs a support group, happy she cares and that she’s helping families with kids like her.
Michelle also wants answers. “Why do strokes happen in babies and kids?” she asks. Nobody knows why, but I hope scientists are working on it. We don’t know why I had a stroke, but I want to know why, so my babies don’t have strokes. … I hope my mom’s group can help find answers.”
Advocating for Your Child After Stroke
The moment you learn your child has suffered a stroke, your role as a parent takes on new meaning. The following organizations may help you, your child and your family.
Family Support Networks
Children’s Hemiplegia and Stroke Administration (CHASA)
http://www.chasa.org/ or http://www.hemikids.org/
(817) 492-4325
A non-profit, Internet-based group where parents of children who have had strokes share information and support each other.
Easter Seals
http://www.easter-seals.org/, (800) 221-6827
An 80-year-old institution providing services that help disabled children and adults gain greater independence. Contact Easter Seals to find the care center nearest you.
The Family Village
http://www.familyvillage.wisc.edu/
(608) 263-5776
A global internet community that allows parents of children with disabilities to share information and resources.
Federation for Children with Special Needs
http://www.fcsn.org/
(800) 331-0688 or (617) 236-7210
This group provides information, support and assistance to parents of children with disabilities.
The National Information Center for Children and Youth with Disabilities(NICHCY)
http://www.nichcy.org/, (800) 695-0285
A national information and referral center that provides information on disabilities and disability-related issues for families, educators and other professionals.
National Stroke Association
www.stroke.org
(800) STROKES (787-6537)
A non-profit that provides comprehensive stroke information, resources and support for stroke survivors, caregivers and others interested in stroke prevention.
Pediatric Stroke Network
http://www.pediatricstrokenetwork.com/
This website brings together friends and families of infant or childhood stroke survivors from around the world.
Publications
Today’s Caregiver
http://www.caregiver.com/, (800) 829-2734
National magazine providing information, support and guidance for family and professional caregivers.
Parent’s Guide to Accessing Programs for Infants, Toddlers and Preschoolers with Disabilities
www.nichcy.org/pubs/parent/pa2.htm
(800) 695-0285
Online guide that answers questions about accessing early intervention services for infants and toddlers. Includes information on how to identify programs in your state.
Special Child
http://www.specialchild.com/
An online publication dedicated to parents of children with special needs. Includes articles on family and legal issues and a bulletin board where parents can exchange tips, success stories and other information.
Advocacy Groups
IDEA Partnerships
http://www.ideapartnership.org/, (888) 433-2463
Provides information about the Individuals with Disabilities Education Act (IDEA). Contact them to learn about services for young disabled children and which disabilities qualify children for special education.
Council of Parent Attorneys & Advocates
http://www.copaa.org/, (410) 372-0208
An independent, non-profit organization of attorneys, advocates and parents established to improve legal assistance for parents of children with disabilities.
American Association of Disabled People
http://www.aapd.com/, (800) 840-8844
Non-profit, non-partisan, cross-disability organization whose goals are unity and leadership benefiting disabled Americans.
Other Resources
Social Security Administration
http://www.ssa.gov/, (800) 772-1213
Contact the Social Security Administration for information about disability benefits, such as Social Security Disability Insurance and Supplemental Security Income.
Shriners Hospitals for Children
http://www.shrinershq.org/, (800) 237-5055
A network of pediatric specialty hospitals where children under the age of 18 receive free medical care.
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