KidPower Site Index

January 2001 Power Connetions

In This Issue:

What is Speech Pathology?
In The News
From the President's Desk
Kid's Corner
Featured Family
Forgotten Siblings?
In the Library
Getting Together

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What is Speech Pathology?
Speech Pathology is the study of speech, language, cognitive and swallowing disorders for the purpose of diagnosis and treatment. A Speech-Language Pathologist (SLP) has earned a Master's degree in Communicative Disorders and is certified nationally through the American Speech-Language-Hearing Association. Many states also require licensure through the State. For example, in the State of California, a Certificate of Clinical Competence (CCC) is issued when the licensure is obtained. Continued education is now mandatory to maintain licensure.

A SLP serves both children and adults with:
Traumatic Brain Injury, including Cerebral Palsy
Stroke (Cerebral Vascular Accident)
Spinal Cord Injury
Voice Disorders, including voice after tracheostomy
Swallowing Disorders (Dysphagia)
Neurologic Disease
Respiratory Disease

Where do I Find A Speech Pathologist?
Speech-Language Pathologists work in a variety of settings, which include the following:
Hospitals (Rehabilitation, Acute and Intensive Care)
Public Schools (Elementary through College)
Outpatient Centers
Skilled Nursing Facilities
Home Healthcare

HOW DO I GET FUNDING FOR THESE SERVICES?
Speech-Language Therapy is often covered in many healthcare plans. Plans often provide funding for therapy in hospitals, outpatient centers, skilled nursing facilities and home healthcare. The case manager in these facilities can often help determine what will be covered under your insurance plan. In some states, such as California, families may be eligible for State funded programs such as California Children's Services (CCS). Regional Center is another State funded program available in California, which may help obtain treatment, assistance, education and counseling. Public schools are required to provide services, elementary through college age. Many colleges and universities that have Communicative Disorders programs, offer a clinic experience which is low cost to the public. In these clinics, Communicative Disorder students are required to complete internships in which they learn to evaluate and treat clients, under the supervision of a licensed Speech-Language Pathologist.

QUESTIONS TO ASK YOUR SLP:
1. How much experience do you have in working with children and/or adults with Cerebral Palsy?
2. Do you specialize in any area, i.e. swallowing disorders, cognitive impairments, speech disorders etc.?
3. Is your work experience primarily with children or adults?
4. Do you work closely with a team of professionals (physical therapist, occupational therapist, physicians etc)?
5. What experience/access do you have with alternative communication such as sign language, computerized communication devices or other forms of alternative communication if your child is non-verbal?

IMPORTANT THINGS TO REMEMBER:
1. Don't hesitate to ask the above questions. You are interviewing the Speech-Language Pathologist because you want the one who will most benefit your child.
2. Education of the patient/client and family/caregivers is a critical part of treatment. Expect and request to be educated in words you can understand. Request information in writing as needed.
3. If you do not understand the rationale behind a certain treatment plan, ask the therapist to explain this to you. For example, why would you choose a non-verbal communication option (such as a communication board or device) rather than help my child speak verbally.
4. If you are not satisfied or comfortable with a particular therapist's personality or treatment approach, it is always okay to seek a second opinion or request a different therapist. It is imperative that both you and your child feel you are benefiting from the treatment.
5. For further information on Speech-Language Pathology or ways to locate a Speech Pathologist in your area, contact www.asha.org or call 800-498-2071.

______________________
Janel Butera, M.A. SLP
Loma Linda University Medical Center
New Mom to Shane, 8 months, Diagnosed with Mild Spastic/Ataxic Quadriplegia/Seizure Disorder

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In The News
Tegretol Recall (12/26/00): Novartis Pharmaceutical Corporation is recalling Tegretol(r) (carbamazepine), 200 mg, in 100 and 1,000 unit bottles because of dissolution failure. See http://www.safetyalerts.com/recall/f/004/d059-1.htm for more information.
Tax Reminder: when filling out your income tax for the year 2000 remember that you are allowed to deduct certain medical conference expenses. See http://www.house.gov/georgemiller/rel5800.html for more information.
FDA Recall of Phenylpropanolamine (11/06/00): Contained in cold medicines. See http://www.safetyalerts.com/recall/f/00/ndac1.htm.

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From the President's Desk
Welcome to the first addition of the KidPower newsletter, Power Connections. It is hard to believe that a little over two years ago KidPower was just a one page website and 20 member email list. The site and the list have grown considerably. Through both, we were made very aware of the need for support and services for families with children mildly affected by cerebral palsy and/or other disabilities. Because of this need KidPower Family Support Resource incorporated and became a 501 (c)(3) non-profit organization in January 2000. I feel that it is fitting that we are celebrating this one-year anniversary with the publication of our first newsletter. Along with the original services we provided including informational mailings, the website and support list, we now also provide the sensory integration dysfunction support list and home page, temporal lobe epilepsy list, hyperbaric oxygen therapy list and a support list for the children. We hope to be able to one day provide grants to children to help pay for equipment and therapies. We are in the process of planning our first conference, which will be held this year. None of this would be possible without the help of our board of directors, volunteers and supporters. We want to thank all of them for their time and monetary contributions. We plan for this newsletter to provide information on many special needs issues. The newsletters will include featured families, book reviews for adults and children, articles written by therapists and doctors on a variety of subjects, new information on medical procedures and therapies, information on alternative therapies from the family, therapist and doctor perspective, and special education law news and information. We hope you enjoy this and future publications and we look forward to serving you for many years to come.
Sincerely,
April D. Hernandez, President

We always welcome your comments on how to improve this newsletter. Please contact us with comments, concerns, questions or to be removed from our mailing list, at: newsletter@kid-power.com or toll free at (866) 543-7697

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Kid's Corner
Stretching Ourselves: Kids with Cerebral Palsy
By Alden R. Carter

Review by Mackenzie Diamond
9 years old

This book answered most of my questions, like why some children have cerebral palsy. However, it did not answer my questions about how they were affected. The book told me more about their lives but not about what specific exercises are done and what is done in therapy.

I thought the book was interesting. It did not explain to me why my sister has CP but my mom did explain that no one knows why my sister has CP.

My older sister, who is 14 years old, thought the book was very informative and thought it would be good for someone who was new to Cerebral Palsy.

It prompted our little sister to ask us some questions about her CP when we read it to her. She wanted to know why some children with CP could walk and why some could not.

I would recommend this book for younger children to show them that others also have CP and that they are not alone.

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One of My Favorite Sites On the Web:
Besides KidPower of course is Zoog Disney. Check it out at http://disney.go.com/disneychannel/zoogdisney/index_main.html

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Forgotten Siblings
Growing up with a special needs sibling has been a journey for me. There have been times when I wished for a "normal" sibling. My brother was diagnosed at the age of three with a learning disability, developmental delays and A.D.H.D. It was not until recently that he was diagnosed with O.C.D. I have spent much of my twenty years wishing that my little brother did not have any problems. Wishing that he was able to do the things that my friends little brothers were doing in school, at home, anywhere.
There were times growing up when I wished my parents could spend more time with just me. Every Saturday, when my parents took my brother to swimming lessons, I sat on the bench wishing I was somewhere else. I've struggled to accept this, as I have struggled to accept his shortcomings. I've had to accept him not being the smartest or most likable kid. What has come so easy for me academically causes him frustration.
Lately, I have wondered if I might have come to accept the situation if I had been able to talk about my feelings more openly, and feel less forgotten. I am writing this article and talking to my friends and peers about being a sibling for this reason. I am saying to the world, "Look. Siblings matter too! Don't forget us!"
What would I say to parents who have children, special needs or not? Accept the sibling as is; do not try to force the child to interact with the special needs sibling. They will do this in their own time. Remember it is important to spend time alone with the sibling.
To my fellow siblings in the next generation, remember you are not alone! There are others that have gone before you as there will be others after you. Have friends that have special siblings and friends who do not. Above all remember this; you are you first. Don't get lost in the identity of special sibling.

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Written by Debra Hedrick, Special Sibling

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In The Library
What is it like to grow up with a special needs sibling? It can mean different things in different families; but for all families it means extra issues, extra worries. Will the neighborhood kids accept all my children? Will it be hard on my other children to explain their special sibling? Will they feel it's unfair? Sometimes just knowing you are not the only one helps. There are lots of books written to share as a family that open conversations, help to explain siblings to friends, and ease those left out feelings. Here are some of my favorites.

Sister, Brother, And Disability: A Family Album By Lydia Gans has great photos of families with a special needs member. It is a series of 26 short stories that can be read together as a family, or discussed with pictures for younger children. Sisters and brothers share what it is really like to live with their siblings. Each family tells their story in a very open honest way.

Views from Our Shoes Growing Up with a Brother or Sister With Special Needs, Edited by Donald Meyer is a great collection of short essays written by siblings telling us about their special brothers and sisters. Arranged by the age of the writer, these stories try to explain their siblings special needs to the rest of the world. Every child will find a friend to relate to in this book. These stories were collected at many SIBSHOPS that Donald Meyers conducts around the country.

What About ME?: Growing Up With A Developmentally Disabled Sibling, by Bryna Siegel & Stuart Silverstein is great parent reading to get ready for all those family conversations. Dr. Silverstein tells us what it is like as an adult with an autistic brother. How outside factors like culture, religion, education and economics effect the whole family and how they adjust. Signs to look for in your family of coping or problems. What resources in the community should you seek out? What will your family be like in the future. This is a book you will want to read again many times over the years.

Between Brothers & Sisters: A Celebration of Life's Most Enduring Relationship, by Adele Faber and Elaine Mazlish is a wonderful collection of photos and poems of young brothers & sisters together. At the point when you wonder will things ever be normal again, these photos remind you that all families share wonderful moments together. For some families they may be regular events, and for others rare moments, but for all families they are special!

__________________________
Written by Joy Liebskind

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Getting Together
Summer is a time for fun, being outside and getting together with friends. Several KidPower members and their families experienced all three at the second annual Texas get together in July.
Five KidPower families attended. The kids all had a wonderful time swimming at the hotel and at the water park.
Everyone stayed at the Country Inn in North Richland Hills and went to the NRH2O water park. Ryan's restaurant was where they could be found when it was time to eat.
We plan to combine the third annual Texas get together with the first annual KidPower conference to be held in late summer or early fall. More information will be provided in the April newsletter concerning the conference date, topics and registration. We hope that many of you will be able to join us in Texas this year.

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