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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.

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■ 20 November 2009 | 12:33 PM

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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■ 18 November 2009 | 6:59 PM

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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■ 17 November 2009 | 8:14 AM

Virginia Assistive Technology System Demo Lab at ODU

What does the VATS Lab offer?
 
An assistive technology demonstration lab with a variety of helpful computer hardware and software for different disabilities. There are adaptive keyboards, talking programs and mice to help with accessing the computer.
 
In addition to the computer software, they have a large assortment of assistive devices to help with personal hygiene, kitchen chores, eating, reading, writing, crafts, etc.
 
Visits are free:
Call their office to set up an appointment (757) 683-3639.
 
VATS is a project committed to improving the quality of life for ALL VIRGINIANS by increasing awareness and accessibility to assistive technology. Through a variety of consumer driven activities and programs, information and technical assistance are provided on devices, services and funding resources.
 
VATS - SE Regional Site
(757) 683-3639
Education Building
Lab Room 224
Office Room 252
 
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■ 16 November 2009 | 8:10 AM

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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■ 12 November 2009 | 10:19 AM

FriendAble Social Club: Nov. 20th

The Mary Buckley Foundation offers services to help people living with the effects of brain injury regain the skills necessary to live independently, re-enter the workforce and become contributing members of their community. We provide a support system for people, rather than a treatment program. Services are administered through community-based programs designed to provide a safe environment where individuals can achieve personal success and satisfaction.
Services include:
  • 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
 
FriendAble Social Club
 
November 20, 2009
 
6:00 – 8:30 p.m.
 
Come Join Us At Our New Location:
 
The Lynnhaven Center
1045 Lynnhaven Parkway
Virginia Beach, Va.
 
Next events: December 4th and 18th
 
For more information, please contact:
 
Joann Mancuso at 757.274.7586 or email joann@maryfoundation.org
or
Matt Buckley at 757.274.2460 or email matt@maryfoundation.org
 
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■ 10 November 2009 | 12:55 AM

Boy Alone: A Brother’s Memoir

Boy Alone: A Brother’s Memoir
By Karl Taro Greenfeld
 
Book Description:
 
Karl Taro Greenfeld knew from an early age that his little brother, Noah, was not like other children. He couldn’t crawl, and he had trouble making eye contact or interacting with his family. As Noah grew older, his differences became even more pronounced – he was unable to communicate verbally, use the
toilet, or tie his shoes, and despite his angelic demeanor, he often had violent outbursts.
 
No doctor, social worker, or specialist could pinpoint what was wrong with Noah beyond a general diagnosis: autism. The boy’s parents, Josh and Foumi, dedicated their lives to caring for their younger son with myriad approaches – a challenging, often painful experience that the devoted father detailed in a bestselling trilogy of books.

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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■ 09 November 2009 | 10:08 AM

Center for the Improvement of Child Caring (CICC)

 

At-A-Click the Center for the Improvement of Child Caring is pleased to provide you and your community with a carefully organized and extensive list of resources you can use to help more parents to be as effective as possible. From this list, you will be able to click on the topic, parenting program, class, workshop, or parenting books, videos, and DVDs of which you are interested. They you will learn how you can bring that resource to your community.
 
The list includes:
 
  • 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

 

438 Parenting 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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■ 08 November 2009 | 9:19 AM

Juvenile Arthritis Weekend 2010

Juvenile Arthritis Weekend 2010
 
January 29th – 31, 2010 (Friday – Sunday)
 
Join us for our Sixth Annual JA Weekend, January 29 -31, 2010, as the Mid-Atlantic Chapters converge on the Great Wolf Lodge to Rustle Up Hope for juvenile arthritis.
 
JA Weekend is a fun-filled time designed for families with children ages (3-16) living with a juvenile rheumatic disease and especially geared towards newly diagnosed patients to navigate the new world of arthritis, to network and to know they are not in this alone.
 
This is also an informative conference led by rheumatologists and health care professionals to give parents the latest on treatments and available options. Priority is given to newly diagnosed children and their families and to families who have not previously attended JA Weekend at Great Wolf Lodge.
 
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■ 07 November 2009 | 7:03 PM

Young Adults Striving for Independence (Y.A.S.I.) : Sat. Nov. 21st

Young Adults Striving for Independence (Y.A.S.I.)
 
November 21st (Saturday)
12:00 pm – 2:00 pm
 
To sign up for a training or to request an accommodation such as a Sign language interpreter, Braille, CART or attendant.
 
Contact: Linda at 461-8007 Voice, 461-7527 TDD, or E-mail Linda at: ljohnson@endependence.org
 
The Y.A.S.I. group is for you if you are currently attending middle or high school.  You can bring a friend with a disability who is also in school.
 
Facilitator: Anton Kromoff  
Cutoff for registration: November 13, 2009
 
 
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■ 06 November 2009 | 12:16 PM

We Can….Transition Together: Sat. Nov. 14th

We Can….Transition Together
A transition resource fair for students with disabilities, their families and professionals
Presented by the Peninsula Transition Council (Pen Tran)
Sat. Nov. 14th, 8:30 a.m. – 1:00 p.m.
 
Warwick High School
51 Copeland Lane, Newport News, Va. 23601
 
Lunch is provided FREE! Breakout sessions include: Independent Living/Community Participation; Employment/Technical Education; and Post-Secondary/Adult Education/Student Services. Admission: One or more canned goods or non-perishable items to be donated to Peninsula Food Bank. Please email, fax or mail registration to:
 
Michele Jones, Transition Specialist
12465 Warwick Blvd., Newport News, Va. 23606
Michele.jones@nn.k12.va.us    757.599.5905 fax
 
 
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