Marissa, age 5, on her first day of Kindergarten.
Marissa is diagnosed with Cerebral Palsy and Short Bowel Syndrome.
Swinging the Illness Pendulum
by Erin
As a child, I was fascinated by the swinging Foucault
Pendulum at the Smithsonian's National Museum of American History in
Washington, DC. Its movement mesmerized me, watching it swing back and
forth in a predictable rhythmic and hypnotic fashion, knocking over a
ring of pins as it completes its trajectory around the dial. Although
the Foucault Pendulum is set up so that it makes a predetermined journey
around the perimeter of the dial over 24 hours, I have found,
nevertheless, that the movement of a free-swinging pendulum has powerful
meaning while parenting a child with a chronic illness.
Focus: Back to School
Every Path Begins Somewhere: Early Intervention for Children with Special Needs
by Anita M. Birk
I remember the first time I walked into the doors of our county school for children with special needs to receive Early Intervention services. I was bringing my son Owen, just two months old at the time, for his first physical therapy session, to address a neck and head posturing condition called torticollis. I remember seeing the tiniest little wheelchair I had ever seen sitting in the hallway, and I thought for a moment about the child to whom it may belong, and truthfully it made me so incredibly sad. I had a sense of guilty relief that I had a "normal" child who would never know such struggles. After all, I had a child with a stiff neck--nothing more!
I watched as teachers and aides efficiently loaded children off of the buses with smiles and joy--wondering what they were so happy about working with all of these sick children--and I saw all sorts of children with developmental challenges beyond description. I distinctly remember thinking, "Why are we here--we aren't a member of this club?" So little did I know.
by Anita M. Birk
I remember the first time I walked into the doors of our county school for children with special needs to receive Early Intervention services. I was bringing my son Owen, just two months old at the time, for his first physical therapy session, to address a neck and head posturing condition called torticollis. I remember seeing the tiniest little wheelchair I had ever seen sitting in the hallway, and I thought for a moment about the child to whom it may belong, and truthfully it made me so incredibly sad. I had a sense of guilty relief that I had a "normal" child who would never know such struggles. After all, I had a child with a stiff neck--nothing more!
I watched as teachers and aides efficiently loaded children off of the buses with smiles and joy--wondering what they were so happy about working with all of these sick children--and I saw all sorts of children with developmental challenges beyond description. I distinctly remember thinking, "Why are we here--we aren't a member of this club?" So little did I know.
The Problem with Labels
by Anonymous
If your child receives special education services, there is no doubt that you have pondered the effects of labels. Interestingly enough, parents are the first to bestow a label on their children. It seems that one of the rituals of pregnancy is to rummage through baby naming books, check out online directories, and search for the latest trends in an effort to either join or depart from the crowd. Why do we invest so much time, effort, and thought into the name we will give our child? Because that name often signifies our vision of our child, and specifically it becomes an outward sign of the hopes and dreams we hold for him.
This is why it can be so unsettling to have others bestow a label. Sure, we would likely welcome the label "valedictorian," "quarterback," or "volunteer of the year," but when the label has the potential to negatively affect how others view our child, this threatens our vision. When the label makes it hard for us to hold onto our hopes and dreams, conflict arises. It simply is not possible to look at the issue of labels without looking at the hopes and dreams we hold for our children.
by Anonymous
If your child receives special education services, there is no doubt that you have pondered the effects of labels. Interestingly enough, parents are the first to bestow a label on their children. It seems that one of the rituals of pregnancy is to rummage through baby naming books, check out online directories, and search for the latest trends in an effort to either join or depart from the crowd. Why do we invest so much time, effort, and thought into the name we will give our child? Because that name often signifies our vision of our child, and specifically it becomes an outward sign of the hopes and dreams we hold for him.
This is why it can be so unsettling to have others bestow a label. Sure, we would likely welcome the label "valedictorian," "quarterback," or "volunteer of the year," but when the label has the potential to negatively affect how others view our child, this threatens our vision. When the label makes it hard for us to hold onto our hopes and dreams, conflict arises. It simply is not possible to look at the issue of labels without looking at the hopes and dreams we hold for our children.
Taking a Service Dog to School
by Jackie Smolinski
August means back-to-school time, and with the impending new school year, it's time to check off your back-to-school lists. I'd like to share our list with you:
by Jackie Smolinski
August means back-to-school time, and with the impending new school year, it's time to check off your back-to-school lists. I'd like to share our list with you:
- Bathed (groomed)
- Nails clipped (times two!)
- New school clothes washed and ready (mutt mat washed and ready)
- Feeding pump and backpack ready (tether strap and harness ready)
- Gluten and milk free snacks (puperoni treats)
- List of medications and health information (list of service dog commands)
- Diapers and butt wipes (doggie paw wipes)
- Feeding bags for the feeding pump (bags to clean up dog poo)
- Trip to the doctors for all the med forms to be filled out (trip to the vet)
- Rectal Diastat check! (anal glands exuded check!)
(Read More)
Making Inclusion Work for Children with Significant Disabilities
by L. Kelly
It's the week of my daughter's sixth birthday. Over the summer we decided we'd throw her very first birthday party with friends instead of family. We made reservations, picked out invitations, and started planning the details. Cake or cupcakes? Or do we skip cake and just have lollipops since she doesn't eat? Balloons or streamers? Girls only, or girls and boys? How many invitations to send? Who to invite?
The class lists for this school year came out three weeks ago, and with some help, we picked out children to invite to the party. A mix of friends from Kindergarten last year, and this year's first grade class. 16 friends invited.
A tiny voice in the back of mind asked, "Will anyone WANT to come? They are so different than my daughter...."
The invitations went out in the mail and the next day my questions were answered. Yes, they want to come. In fact, her party was the hot topic of conversation at school that day. I suppose I shouldn't have been surprised since we always hear that she's very popular. But I could have never imagined what an important part of the class she has become.
(Read More)by L. Kelly
It's the week of my daughter's sixth birthday. Over the summer we decided we'd throw her very first birthday party with friends instead of family. We made reservations, picked out invitations, and started planning the details. Cake or cupcakes? Or do we skip cake and just have lollipops since she doesn't eat? Balloons or streamers? Girls only, or girls and boys? How many invitations to send? Who to invite?
The class lists for this school year came out three weeks ago, and with some help, we picked out children to invite to the party. A mix of friends from Kindergarten last year, and this year's first grade class. 16 friends invited.
A tiny voice in the back of mind asked, "Will anyone WANT to come? They are so different than my daughter...."
The invitations went out in the mail and the next day my questions were answered. Yes, they want to come. In fact, her party was the hot topic of conversation at school that day. I suppose I shouldn't have been surprised since we always hear that she's very popular. But I could have never imagined what an important part of the class she has become.
Specialty Articles
It turns out that sleep problems are very common among children, and many studies show that as many as one in three children has sleep problems or a sleep disorder. Sleep problems are even more common in children with special needs, especially children like my daughter who have neurologically-based disorders, such as autism, cerebral palsy, or cognitive impairment. As many as 80% of these children may experience sleep problems.
Children who are sleep-deprived, as well as their similarly sleep-deprived parents, can suffer grave consequences. Their mood, behavior, and development are often affected dramatically, causing irritability, hyperactivity, and other negative behaviors during the daytime hours. In addition, their physical health, including seizure regulation, immune system strength, and cardiovascular health, may be negatively impacted by poor sleep and sleep deprivation.
(Read More)
Metabolic, Genetic, and Congenital Disorders
According to the National Institutes of Health (NIH), 30 million Americans are afflicted with a rare disease, or one in ten people. The National Organization of Rare Disorders (NORD) estimates that of the 30 million people in the United States suffering from rare diseases, approximately 50 percent, or 15 million, are children. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthdays.
The Global Genes Project is a new campaign of the Children's Rare Disease Network, and is a grassroots effort to increase awareness about the prevalence and lack of treatments for rare diseases worldwide. Global Genes uses the connection between the pairs of jeans we wear and the genes that make up our 23 pairs of chromosomes as a method of raising awareness. More than twenty corporations, as well as numerous hospitals, non-profits, and rare disease organizations support the Global Genes Project. For more information, visit http://www.crdnetwork.org/ or http://www.globalgenesproject.org.
(Read More)
According to the National Institutes of Health (NIH), 30 million Americans are afflicted with a rare disease, or one in ten people. The National Organization of Rare Disorders (NORD) estimates that of the 30 million people in the United States suffering from rare diseases, approximately 50 percent, or 15 million, are children. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthdays.
The Global Genes Project is a new campaign of the Children's Rare Disease Network, and is a grassroots effort to increase awareness about the prevalence and lack of treatments for rare diseases worldwide. Global Genes uses the connection between the pairs of jeans we wear and the genes that make up our 23 pairs of chromosomes as a method of raising awareness. More than twenty corporations, as well as numerous hospitals, non-profits, and rare disease organizations support the Global Genes Project. For more information, visit http://www.crdnetwork.org/ or http://www.globalgenesproject.org.
(Read More)
Feature Article
I know some of you are adventurous, but there are plenty of others out there who are afraid to go on vacation and think the entire process is unbelievably overwhelming. This article is for all of you parents who need to bring 12 boxes of supplies and four pieces of medical equipment for just a day trip, and can't even begin to imagine what three days in another state would mean. Hopefully it will make the planning process less overwhelming. Really, you CAN do this!