Parenting Special Needs
From the desk of a parent of a 16-year-old, special education student, diagnosed with cerebral palsy, developmental delay and a physical disability. This blog is for parents and caregivers of children with special needs, as well as educators and health professionals. Here you will find events in the area, updates to laws, as well as opportunities, with my own personal stories thrown in for heartbreak and encouragement. Have a question? Just ask.
Santa came early
Most of you remember last week. All that rain. Kids off Wednesday for Veteran’s Day. Then the storm hit and school was cancelled Thursday and Friday. Yeah, that’s the week I’m talking about. Add to that a sick kid in a wheelchair. One that won’t stop coughing. One that can’t go to the doctor because they’re closed because of the storm. That’s how last week was.
My son was still coughing and gagging on Monday, so I called the doctor, fearing a verdict of flu or swine flu. Fortunately, it was just sinusitis. Sinusitis! What?! This kid has been coughing up a lung for almost a week. Not eating or drinking. Miserable. So miserable that I let him have the Madden 2010 video game that he’d been asking for, for 5 months now. Yes, Santa came early.
My son had to stay home on Tuesday too. He needed at least 2 days of antibiotics in him. I just wish that I’d thought of giving him the game before Sunday. That way I could have had a moment’s peace.
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When the bus ride is too much
Most children with special needs are on the school bus for over an hour, in the morning and afternoon. For many children this is too much. What can you, as a parent do about this? Talk to your child's physician.
When my son first started riding the bus, I was told that he would be on the bus for an hour and fifteen minutes. I freaked out.
It didn't take two weeks before his bus driver was complaining about his sleeping on the bus. It wasn't just that he was sleeping; it was because, even though he was situated in his wheelchair properly, he became so tired during the ride that he would slump over. His head would slump into his chest. This was not a safe position for anyone to be in. So, I spoke with his doctor.
His doctor gladly wrote a letter stating that was not acceptable and recommended a 15-minute bus ride.
I immediately called for an IEP meeting. I had the letter that the physician wrote become part of his IEP.
You can do the same thing.
On your IEP, where transportation is listed (which by law it has to be) you can say something like, "See attached letter from physician, limiting bus ride to 15 minutes."
Once that is done, then transportation has to do what the physician's letter says.
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Virginia Assistive Technology System Demo Lab at ODU
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SOAR
I was recently introduced to SOAR; an internet-based program for students in grades 3-12. It's meant to help families manage their children's education with innovative technology. The focus is on math, reading and language arts.
SOAR was once just available only to military families, to assist their children with their education, during those stressful times. Students can go to www.MilitaryStuden.org to take a test and see where they might need help. Parents are able to monitor the child's progress from anywhere in the world.
I tried it out on my developmentally delayed 16-year-old and I found out, the hard way, that it's best if you key in the child's current reading grade level and not there actual grade level. Or, if math is the area of need, then type in the child's current math grade level.
I do think that SOAR is great for those children that are not significantly delayed. So, if your child needs a little help, then check out SOAR, which can be accessed from www.MilitaryStudent.org.
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FriendAble Social Club: Nov. 20th
- Brain injury awareness and information
- Links to brain injury resources
- Youth education on brain injury prevention and safety
- Clubhouse Program - Tidewater Area
- Day Program - Eastern Shore
- Social Club - Tidewater Area
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Boy Alone: A Brother’s Memoir
Now, for the first time, acclaimed journalist Karl Taro Greenfeld speaks out about growing up in the shadow of his autistic brother, revealing the complex mix of rage, confusion, and love that defined his childhood. Boy Alone is his brutally honest memoir of the hopes, dreams, and realities of life with a mentally disabled sibling.
Seamlessly weaving together the social history of autism and autism research—as the Greenfelds lived through it in seeking treatment for Noah—with the deeply affecting story of two very different boys growing up side by side, this book raises crucial philosophical questions: Can relationships exist without language? How should aging parents care for a nonverbal, violent child, and then a grown man who is not self-sufficient? Is there anything that can be done to help an extremely autistic child or adult become a member of mainstream society?
Haunting, tragic, and unforgettable, this chronicle of autism is a beautiful, wholly original exploration of what it means to be a family, a brother, and a person.
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Center for the Improvement of Child Caring (CICC)
- Current Issues in Parenting
- Parenting Program Curricula
- Parenting Instructor Workshops
- One-Day Seminars for Parents
- Online Parenting Programs
- National Organizations
- National Effective Parenting Initiative (NEPI)
- Parenting Videos, DVDs and CDs
- General Parenting Books
- African American Children
- Latino American Children
- Children with Special Needs
- Helping Children Become Financially Literate
- Internet Issues and Safety
- School-Related Resources
http://www.ciccparenting.org/newsletters/438.htm
Center for the Improvement of Child Caring (CICC) 6260 Laurel Canyon Blvd, Suite 304, North Hollywood, CA 91606 818.980.0903 voice 818.753.1054 fax 800.325.CICC ciccparenting@sbcglobal.net
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Juvenile Arthritis Weekend 2010
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Young Adults Striving for Independence (Y.A.S.I.) : Sat. Nov. 21st
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We Can….Transition Together: Sat. Nov. 14th
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