March 14, 2007
Bath Seat for Children with Cerebral Palsy
Many parents have a hard time finding the right bath seat for their children living with cerebral palsy. Often times simply laying a child down in the water isn’t an option because of chronic ear infections. With smaller children most bath seats are simply to big or require the tub to be over filled. If you really need or want to use a bath seat, many parents with small children like this bath seat, or similar ones for children who cannot sit by themselves. Look for a seat with a high back and adjustable hand rails as well as ways to secure your child safely and comfortably.
Most insurance will cover the cost. If you need help with insurance you can always contact one of our Live CareCenter Specialists, who can provide support or advice.
February 28, 2007
Glenda Watson Hyatt’s must read book: “I’ll Do It Myself”
This is really a must read book for anyone affected by cerebral palsy- parents, family and friends will all benefit from reading this enlightening and inspiring autobiography. The book is written by well known accessibility expert Glenda Watson Hyatt, who is also living with cerebral palsy.
For information on her recently published autobiography “I’ll Do it Myself” visit her website http://www.booksbyglenda.com/index.htm.
Her book is candid, well written with humor and warmth.
From her website:
Glenda has cerebral palsy. A lack of oxygen at birth meant she would not be able to walk, her hands would not function well and her speech would be almost impossible to understand. Her parents were advised to institutionalize her. She wouldn’t amount to anything, the experts said.
Yet, this gutsy redhead proved them wrong. Glenda was integrated into a regular classroom long before mainstream was a buzzword. She went on to earn the Canada Cord, the highest award in Girl Guides, and the Outstanding Junior Student Award. The girl who could not walk won a gold medal in horseback riding!
How did she do it? Read Glenda’s inspiring autobiography I’ll Do It Myself, now released! Glenda intimately shares her life story to show others cerebral palsy is not a death sentence, but rather a life sentence.
February 27, 2007
Turning Automotive Seating (TAS) for Children with Wheelchair or Walker
What a great option. If your child has problems getting in and out of the car or uses a wheelchair or walker this may be a solution for you. A Turning Automotive Seat or TAS is now coming as an option on many makes of minivans. The seats actually turn or swivel to face the door, making it easy to get in and out of the van. The seat will simply take the place of a captains chair with little alteration. It can also move up or down with a power lift option. The TAS seat may also be covered under most insurance plans. I know both Dodge Caravan and Toyota Sienna have these seats available. You can also buy aftermarket from http://www.bruno.com/tas-models.html.
February 22, 2007
Cry For Acceptance: When We’re in the Halls, Remember: I Can Hear You
This column was published in the December 2006 issue of Chancellor High School’s newspaper, The Lightning Bolt.
The teen, Chandler, really just wants to be treated like everyone else and takes this bold measure, publishing his thoughts in the school paper to tell his classmates how he feels.
When We’re in the Halls, Remember: I Can Hear You
By Chandler Pascale
You may have seen me treading through the halls, going down the stairs, or getting off of or onto my bus. You can instantly note that I have an awkward gait (way of walking) about me. I happen to have been born prematurely, and diagnosed with Cerebral Palsy. Cerebral Palsy (more commonly known as just CP) is a disease in which my brain doesn’t send its “messages” to my legs clearly, thus my way of walking is different than that of the average individual. This ailment also affects the dexterity of my hands and fingers. To think, I wanted to be a policeman when I was little!
Lately, I have heard people laugh at me, mock me, cuss me out (which I may add is an act of the purest cowardice) and plainly insult me right in my face. No, I’m not mentally retarded; in fact I’m pretty smart, and not in any Special Education classes. Many people stereotype someone who walks differently or has some other handicap as being mentally retarded or even un-human when, in reality, they are just like everyone else in all other respects. My disease is not contagious; you can’t catch my disorder by sitting next to me or at all for that matter. If you’re scared that your friends will make fun of you if they spot you talking to me, you have a choice: grow a backbone or keep worrying about your ego. (more…)
February 19, 2007
Website offers to link socially conscious businesses and suppliers
Here is an interesting concept, buy five dozen sandwiches and two plates of cookies for your next meeting and you could help give a disabled person, immigrant or youth a job. Currently online in 8 communities in Canada with 10 more in the works.
The site or portal, Social Purchasing Portal works by
promoting sites that offer everyday business goods and services, such as office supplies, catering, and couriers, to create local economic and social value without added cost or loss of purchasing value.
Say you are an office manager- you can choose to buy office supplies or sandwiches for the next meeting through a socially conscious group- say one that gives employment and training to young adults with cerebral palsy.
Purchases buy from social value suppliers in the local community – if at a competitive price- and suppliers agree to meet social and economic objectives and offer employment in the local community.
I have not heard of similar idea in the United States. If you know of one please let me know and I will absolutely promote it on our blog. What do you think of this idea? Is it exploitive? Is is a good way to encourage the hiring of people with disabilites? Would you be more iclined to buy services from a site or company that was “socially concious?” Please post your thoughts in comment section.
December 27, 2006
Boundless Playgrounds- Barrier Free Playgrounds for children with special needs
These playgrounds are designed for ALL children, regardless of abilities. They are barrier free and allow children of all abilities to enjoy outdoor play. The group works with volunteers and city officials to create a barrier free playground from standard playground equipment. The process begins with a group of committed individuals who get together and form a committee, with the building of a barrier free playground in their neighbourhood as their mission. Boundless Playground can help you get started and work with you to get the project accomplished.
There are many barrier-free and accessible playgrounds in the United States- for a complete list of playground or to find one in your neighbourhood, you can visit http://boundlessplaygrounds.org/findplaygrounds/.
December 21, 2006
Share Your Cerebral Palsy Experiences
Sometimes knowing others are going through similar struggles and triumphs can make a difference when things get challenging. Maybe you and your child have overcome a struggle and can share your success with other moms and dads. We would love to hear your stories. You can visit our cerebral palsy discussion forum or post here in comments section.
December 20, 2006
Solutions for Finger Chewing in Children with Cerebral Palsy
Many children living with cerebral palsy with have different types of sensory issues. One behavior that often pops up in children is chewing their fingers, often as a form of self-soothing, and they will do it while bored or anxious.
There are several products you can buy, often referred to as “chewies,” a number of different products your children can safely chew can be found at Sensory Tools.
A cheap and easy solution many moms use is to cut sections (1-2 feet) of suction tubing or rubber tubing.
Older children, if they can manage, like chewing gum (sugarless will much easier on the teeth)!
December 1, 2006
Tools for Special Needs Living: Personalized Communication Cards and Interactive Booklets
To help with the frustration that comes with not being understood you can use communication cards. These cards have pictures to use that help children and adults living with cerebral palsy better express themselves.
They have also been helpful with anyone with brain injury or autism; the cards let them communicate with family, friends and care givers.
Some families choose to make their own , use a simple board and their own photos (photos taken of items in the home) food, clothing, places, toys etc. Personalized photos make a big difference. These cards feature the person using them, and the things, people, places that are important to them.
Their wants and needs, and thoughts are directed through photographs that feature THEM. When they look at their booklets or cards they are looking at a part of their lives, giving them the connection that is often times missing with other communication aides.
Kay from of www.chattykatcommunication.com makes personalized cards and booklets for many families and writes
“I have found with non-verbal individuals that typical picture exchange is about wants and needs…bypassing any communication about themselves. With personalized and interactive communication aides they can be included in ways they are usually not included in. They can do more than hand over a card to request something…they can communicate that they like something. Let me give you a more direct example.
I recently worked with a gal at a group home, age 24 and with cerebral palsy. I’ll call her ‘Lisa’. Lisa could not communicate except for in high pitch squeals. She could not communicate well with sign language. She often stared off, but I could tell she was waiting for me to guess what she wanted. Misunderstanding her often led to her frustration and consequently a great outburst. One day, while cleaning out her closet I came upon a small photo book, and in it were photos of her in a variety of activities: sitting on her bed, in front of the van that took her to her day care facility, her eating, her near the bath tub. I handed her the booklet that had been tossed on the shelf in her closet and she came alive! She carried the booklet everywhere, and she smiled and delighted in it! If she had a want, a need, a wish…I could more easily give her what she wanted. Her outbursts decreased tremendously. It was through her and my 5 yr old autistic son that I seen a more personalized and interactive way to communicate.”
Kay makes the cards and booklets from your supplied photos. Send her pictures by email and she will make personalized booklets for you family. Her booklets range in price from around $15 – $35.00.
You can view sample pages of the booklets here http://www.chattykatcommunication.com/catalogue.html.
November 29, 2006
Respite Care: Giving Yourself a Break
Respite care is the temporary residential care for a patient with the intention of providing some relief for families and care givers. Respite care is important — often care givers can have seemingly overwhelming stress that gets in the way of their ability to cope and function.
Finding time for yourself is vital. Plan to take a class you enjoy, go to a movie with your husband or the library with other children or even a vacation. Keeping yourself balanced and focused will help all the members of your family and you will be better able to cope with the intensity of caring for your special needs child.
Taking the time to balance the needs of the special needs child will help with your ability to cope and mother your special needs child and as well as maintain a personal and family balance.
There are many organizations that can help you find respite care:
You can find respite care by State here: National Respite Care Locator (Other Respite Care Services)
- ARCH National Resource Center for Respite and Crisis Care Services
Assists and promotes the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums. - Respite Care: A Gift of Time
From the National Information Center for Children and Youth with Disabilities (NICHCY) - Respite Care for Children Who Are Medically Fragile
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with Autism
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with Developmental and/or Physical Disabilities: A Parent’s Perspective
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with HIV-related Conditions
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care: Q & A’s
From Arc - Understanding the “Temporary Child Care for Children with Disabilities and Crisis Nurseries Act”
From the ARCH National Resource Center for Respite and Crisis Care Services
