Caregiving
Commentaries
Our first edition of Complex Child has been received amazingly well, reaching thousands of families all over the world. Our little magazine spread through the internet like wild fire and has generated quite a bit of publicity on the web. We were even featured as the Special Needs Site of the Day on About.com.
The best news is we now have many new submissions and writers, and we have developed partnerships with several different organizations for upcoming issues.
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Christmas with an Autistic Twist
by Jennifer Peterson
As I write this account, it is the morning after a family Christmas party held at a Chinese restaurant. Everyone had a wonderful time at the party and our two small children were still smiling by the end of the evening. That was far from the case last year.
Our son was two and a half years old at Christmas in 2005. A few months prior, he had been diagnosed with high-functioning autism and was receiving occupational and speech therapy. Thomas had always been uneasy around new situations and crowds, so it came as no surprise that he didn't have a good time. However, we had a lot of strikes against us before even stepping foot into the restaurant.
Read More -->by Jennifer Peterson
As I write this account, it is the morning after a family Christmas party held at a Chinese restaurant. Everyone had a wonderful time at the party and our two small children were still smiling by the end of the evening. That was far from the case last year.
Our son was two and a half years old at Christmas in 2005. A few months prior, he had been diagnosed with high-functioning autism and was receiving occupational and speech therapy. Thomas had always been uneasy around new situations and crowds, so it came as no surprise that he didn't have a good time. However, we had a lot of strikes against us before even stepping foot into the restaurant.
This Month's Focus: Caregiving
Just Five Minutes
by Patty Geisinger
Isn't it funny that we have all these silly parties to attend just so we can "pamper" ourselves? Pampered Chef, Southern Living, Creative Memories, Tupperware, Mary Kay, Avon, Partylite, you name it--we have a party in our homes for it. Why? "I have to go to so and so's party because they came to mine." "I got invited, so I really ought to go!" "I've said I would order because she ordered from the PTA fundraiser." Perhaps we are using all these parties and cookie exchanges, volunteer opportunities or fundraisers to actually pamper ourselves in a very overwhelming fashion. We want to spend some time with other women, to talk and commiserate, yet wouldn't it be easier on our schedule and headaches to just admit that we need a break from our lives, our children and our heartaches? And instead of over-scheduling the commitments, we would take a little time for ourselves?
Exchanging Special Needs Equipment and Supplies
The unfortunate truth is that most medical supplies and pieces of special needs equipment are exorbitantly expensive. The reasons for the high costs are multiple, and include higher production costs since the items are not mass marketed, lack of competition, and an expectation that insurance companies will pick up costs. For those of us who are already plagued with high medical bills from doctors and hospitals, the last thing we need is to pay out huge sums for equipment and supplies.
What do you do when insurance will not cover a desperately needed item? One solution is to exchange used or extra equipment and supplies with other families. Some families simply donate their items to other families, while others choose to sell used items at a lower cost.
Living with a Nurse in the Home: Suggestions, Stories, and Solutions
by Varsha Daryanani
The thought of having a complete stranger take care of your child is never easy. When you add in the complexities of a child with special needs, that thought becomes downright nerve-racking. Logically speaking, knowing that the caregiver is a registered nurse, licensed vocational nurse or certified nurse assistant should put your mind at ease. Who better to take care of your child than a trained professional? But as a parent, we are naturally inclined to feel that we are the best caregivers for our children. If we leave them with a nurse, we can't help but wonder if the nurse will give the medicines in the right order or start the feeds on time. Giving up a little control of our children's daily activities is never easy. In the long run, however, it will benefit your child because it will give you a chance to recharge and refresh from the challenges of raising a child with special needs.
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Creating a Care Notebook for Your Child
As parents of children with complex medical needs, we are experts in the day-to-day care of our kids. But there are times when our children must be left with relatives, friends, respite workers, or nurses who know little or nothing about their care. A sudden illness, a car accident, or a death in the family are just a few unfortunate occasions that may require our children to stay with a friend or relative. While we hope that events like these will never occur, we need to be prepared if they do. One of the best ways to prepare is to create a Care Notebook with all of your child's information in it.
As parents of children with complex medical needs, we are experts in the day-to-day care of our kids. But there are times when our children must be left with relatives, friends, respite workers, or nurses who know little or nothing about their care. A sudden illness, a car accident, or a death in the family are just a few unfortunate occasions that may require our children to stay with a friend or relative. While we hope that events like these will never occur, we need to be prepared if they do. One of the best ways to prepare is to create a Care Notebook with all of your child's information in it.
Specialty Articles
Neurology
Is it a Seizure? Diagnostic Limitations of EEGs
Most of the time, children do not have seizures that look like the prototypical convulsions seen on TV shows such as House or ER. These classic seizures, called generalized seizures, tonic-clonic seizures, or Grand Mal seizures, are usually simple to recognize and identify. Many children, however, have events that are much more subtle. A seizure could be as simple as a staring episode, a slight deviation of the eyes, smacking of the lips, a repetitive movement of an arm, or even a hallucination. The child may be conscious, unconscious, or have impaired consciousness. The following standard categorization of seizures shows how varied seizures can be:
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Metabolic, Genetic, and Congenital Disorders
VACTERL Association
by Tracy Reed
VACTERL Association. I remember hearing those words over the phone about a month after our fourth daughter Margaret was born. Maggie was born on a beautiful warm day in August, 2006. Like any child's birth, Maggie's was long anticipated and we couldn't wait to see the new member of our family. Little did my husband and I know that the day of Margaret's birth would begin a journey of twists and turns culminating in a word that we had never heard before: VACTERL.
VACTERL Association
by Tracy Reed
VACTERL Association. I remember hearing those words over the phone about a month after our fourth daughter Margaret was born. Maggie was born on a beautiful warm day in August, 2006. Like any child's birth, Maggie's was long anticipated and we couldn't wait to see the new member of our family. Little did my husband and I know that the day of Margaret's birth would begin a journey of twists and turns culminating in a word that we had never heard before: VACTERL.
Features
Advocacy and Disability
Lessons from the Past: Fighting for the Civil Rights of Children with Disabilities
Let's start with a little bit of history. In 1973, Congress passed the Rehabilitation Act, which included Section 504, a small provision tacked on to what was basically a spending bill providing aid to people with disabilities. But this little provision, using wording from earlier Civil Rights legislation, made it illegal for any federal institution or any institution receiving federal funding to discriminate "solely by reason of...handicap."
It appears that Congress did not truly understand the significance of this little clause. It meant all schools, hospitals, federal buildings, and even public transportation had to be made accessible to people with disabilities. Once the now defunct Department of Health, Education and Welfare (HEW) realized the cost of such an act--purported to be in the billions--they stalled for four years and refused to enforce the regulations.