World Autism Day

Today we are celebrating World Autism Day at St. Paul's Episcopal Nursery School. We have joined Autism Speaks in helping to  raise awareness of this complex class of brain disorders by wearing blue and sharing information. Below is information defining Autism, its prevalence

What Is Autism? What is Autism Spectrum Disorder?

 Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood dis-integrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age.

How Common Is Autism?

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.

By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined. ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

What Causes Autism?

 Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

In the presence of a genetic predisposition to autism, a number of non-genetic, or “environmental,” stresses appear to further increase a child’s risk. The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.

A growing body of research suggests that a woman can reduce her risk of having a child with autism by taking prenatal vitamins containing folic acid and/or eating a diet rich in folic acid (at least 600 mcg a day) during the months before and after conception.  Increasingly, researchers are looking at the role of the immune system in autism.

What Does It Mean to Be “On the Spectrum”?

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

The following red flags may indicate a child is at risk for an autism spectrum disorder, and is in need of an immediate evaluation.

In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path.

Red Flags of Autism Spectrum Disorders:

If your baby shows two or more of these signs, please ask your pediatric health care provider for an immediate evaluation.

Impairment in Social Interaction:

• Lack of appropriate eye gaze
• Lack of warm, joyful expressions
• Lack of sharing interest or enjoyment
• Lack of response to name

Impairment in Communication:

• Lack of showing gestures
• Lack of coordination of nonverbal communication
• Unusual prosody (little variation in pitch, odd intonation, irregular rhythm,
  unusual voice quality)

Repetitive Behaviors & Restricted Interests:

• Repetitive movements with objects
• Repetitive movements or posturing of body, arms, hands, or fingers

 For local resources, please visit the following websites:

 ABOARD Autism Support

 Autism Society of Pittsburgh

 

 For more national information please visit the following websites:

Autism Speaks 

First Signs

Organization for Autism Research 

Autism Society of America

The Dan Marino Foundation

Doug Flutie Jr. Foundation 

Wetherby, A., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C. (2004). Early indicators of autism spectrum disorders in the second year of life. Journal of Autism and Developmental Disorders, 34, 473-493. Based on research at the Florida State University FIRST WORDS® Project.

 

 "What is Autism?." www.autismspeaks.org. Autism Speaks, n.d. Web. 2 Apr 2013. <http://www.autismspeaks.org/what-autism>. 

Parenting Stages

The task of being a parent is much like the growth and development of a young child. Just as children grow and change, so do parents. Each of us grows and develops in our role as parents in our own unique ways just like children. Noted researcher Ellen Galinsky emphasizes the importance of parent’s growth and change as they move from one stage of parenthood to the next. Galinsky conducted extensive inter views with parents who had diverse experiences in parenthood, she analyzed these interviews and presented her conclusions in a book titled The Six Stages of Parenthood.

According to Galinsky, the experiences of parenthood are complex and diverse. However within the diversity, she was able to identify common threads and similar ways that different people perceived their experiences as parents.

From before birth, as a parent we begin to shape our role. We begin to create pictures in our minds of what lies ahead. We form images of both birth and parenthood alike. This stage is Image-Making. We dream about what our child will look like, how they will change our lives and all the wonderful things we will be able to do with our child. We may paint an ideal picture of what we expect parenthood to be.

 Once our child is born until they are able to utter the words “NO” , (somewhere around eighteen months to two years) we are in the Nurturing stage. In this stage we compare the image of parenthood to the reality of our experiences. Many times what we dreamed and what we experience may not match, perhaps we have a baby that suffers from colic or we may struggle with postpartum depression. There may or may not be discrepancies between what is imagined, the child or the parenting experience. Nonetheless, a process of bonding takes place. We become attached to our baby. We face decisions about priorities, about how much time to give the baby and how much time to devote to other aspects of life.

Many parents at St. Paul’s are either entering or leaving the Authority stage of parenting. This stage, we are faced with the task of deciding what kind of authority to be, how rules are set, what the rules are, when they are enforced, and what happens when they are broken. This stage typically starts from the child’s second birthday to around their fourth year.  We must make a shift from being the nurturing parent to one who provides discipline and guidance. Most of us approach parenthood with expectations about what kind of disciplinarian we want to be. We form images about not getting angry, always being capable of unconditional love, or being different than our own parents.  How many of us have uttered those words “I won’t be like my parents, I will do better”. We also have images of what our children will be, always nice or stay the same from year to year. Images that work can be kept; other must be revised in order for the parent and child to grow harmoniously. With a rapidly changing and developing child, we as parents must be just as flexible to grow and develop in our parenting skills. Problems with the child and parent relationship are inevitable and normal during this stage.  The question remains, how to resolve problems when they occur and for a parent it means facing the challenge of being an authority and developing the skills to play the role appropriately.

Once we are more confident and comfortable with the authority stage we are required to change again. As children grow older and near the end of their preschool years the challenge is to shift from the Authority role into an Interpretive one. We need to redefine the authority relationship we recently experienced.  This stage of parental development spans the end of preschool until the approach of adolescence. It is a large shift away from the comfort and control of the familiar family into the larger world of influence and experiences. Although we realize that we are not the only ones who influence our child, we are concerned with how they are interpreting the world around them and developing self-concept. We are also figuring out how we want to interpret our child’s experiences, how to answer their questions, and what kinds of knowledge, skills and values to promote. Another task during this stage is increasing separateness of the child. Our children move into their own identity while holding onto the connectedness with us. As our child gets older, the more we realizes that “my child is not me.”

Some examples of the interpretive stage tasks

·         Deciding what kind of life you want to and can afford to provide – Questions of giving and getting are often focused on material things. Parents have to decide when to say “yes” and when to say “no” to children’s requests

·         Deciding how to interpret facts, skills and experiences to children – bad dreams, community events such as robberies, fires, etc , a teacher the child thinks isn’t fair, a neighbor child that isn’t nice. In addition to interpreting or telling, parents during this stage are listening.

·         Deciding how you want your children to behave (manners, household chores, etc)

·         Deciding how involved you will be in your child’s life at home, away from home. -This decision relates not only to the child, but to how much time parents need for themselves as individuals, for their work and for each other

·         Deciding when and how much to step in, to do things with one’s children

·         Deciding when to let go, to encourage children to do things independently

·         Deciding how involved you will be with other significant people, children and adults, in your children’s lives (teachers, counselors, nursery school staff, parents of your child’s friends, etc.)

·         Deciding how to define the changing relationship between you and your child

Throughout this stage, we respond to children’s questions and concerns, some easy and some not so easy to answer. This creates an opportunity to review what we think, believe and value. It causes us to pull together our own beliefs so we can translate them to our children. This is a demanding, challenging process for ALL parents in this stage.  

Some parents are just beginning their parenting journey while others have more experience. Just like children, we as parents grow and develop at our own rates and in our own unique manner. There are no right or wrong way to parent, there are only varying perspectives based on individual beliefs, values and experiences.

Budget Cuts and Advocacy

This past Tuesday evening St. Paul's Episcopal Nursery School hosted Kurt Kondrich and his family to speak about the Blessings of Raising a Special Needs Child. Kurt and his wife Margie are proud parents of Nolan and Chloe. Chloe was born with Down's Syndrome. Kurt speaks about how ALL children deserve to be included in school and their community as well as have their education individualized and how his daughter should not be qualified or categorized as disabled but ABLED. 

The event was a big success; He spoke to over 80 participants including most importantly families. Also in attendance was nursery school staff, local preschool teachers, early intervention therapists, an early childhood education class from Robert Morris, Bill Isler- CEO of Fred Rodgers Co, Barb Minzenburg- Deputy Secretary of the Office of Child Development and Early Learning, Sheila Cannon-UPMC Down Syndrome Center, Representative from Tim Murphy's office, Nancy Hubley-Education Law Center and a surprise visit from Governor Corbett to say hello to Kurt's daughter Chloe. 

Before Kurt's presentation, the Governor spoke to the audience and it struck me how much advocacy work needs to be done for education both Pre-K and K-12. After visiting with the children in attendance the Governor spoke about children being our future and the need to provide quality programs for them. This was in stark contradiction to his history of budget cuts for education and children's programs.  I anxiously await this year's budget address to see what new cost saving measures will be suggested and how much programs for children will be impacted. 

I have worked with young children for most of my adult life, first in a Head Start program, then in early intervention, supporting children with disabilities, and today direct the nursery school; I also have four children of my own who attend childcare and public school. 

The current debate about our local and national budget is frightening as an educator, and as a parent. A balanced budget, though important, cannot leave our youngest and most vulnerable citizens behind. Unless politicians stop fighting, this March will bring automatic cuts of roughly 8% to federal programs for kids– including Head Start, childcare, K-12 education, WIC, early intervention and more.

An 8% cut may not sound like much, but cuts of tens of millions of dollars in Pennsylvania spell bad things for our families and our economy – thousands of lost jobs, 1,358 fewer children with disabilities served, 3,305 kids without Head Start and 4,522 children without affordable daycare. (When kids don’t get daycare, then their parents lose their jobs too.).

This is a terrible direction for our state. In fact, investing in kids is good for our fiscal future. When we help kids early, we get more school-ready kindergartners, successful elementary students, reduced crime and delinquency, fewer teen pregnancies, increased graduation rates, college attendance and greater adult employment at higher wages. We save money in the long run – and we save lives too.

A country as rich as ours can afford to do right by kids. We need to enact sensible budget reforms that have everyone pay their fair share, not sell out our kids’ futures for political advantage. 

So what are we to do? 

One simple thing... ADVOCATE!

In 2012, Harriett Dichter the Executive Director of the Office of Early Learning in Delaware. Previously Secretary for Pennsylvania's Department of Public Welfare and the founding Deputy Secretary of the Office of Child Development of Early Learning presented at the Pittsburgh Association for Education of Young Children (PAEYC) Play Conference in Pittsburgh.
She presented "Eleven Tips for Advocacy in Troubled Times"

1. Use your voice: you are the expert 

2. Work to protect infrastructure - Early learning programs are effective when they offer children and parents high quality education. This means we have to protect supports and programs that encourage quality

3. Create partnerships - It's all about relationships  - Partner with elected officials, parent, civic and corporate leaders, leaders in education, law enforcement, leaders in health care, human services and lastly the press.

4. Act in the present; think about the future - take steps to grow services now, think about a vision for reform and system development, join the board

5. Use data and evidence that shows that early childhood education improves outcome and economic development.

6. Use your heart

7. Persist - do NOT give up

8. Encourage leadership at all levels - Even the smallest voice can make a big impact

9. Play and Celebrate

10. Show and tell - share stories about high quality programs for children, show off your program to leaders in the field and in your community

11. Stay on message, stay unified - Keep to your message, what is most important to you and the programs for your children. If you need help with your message contact PAEYC for assistance.

I may not agree with the current policies surrounding education or the politics of a particular party or candidate, one thing I learned from the presentation is that it doesn't matter. What ever political party you belong to I am going talk to  you and advocate for children and what is best for them and I encourage everyone to do the same. 

Many Thanks to Kurt, Margie, Nolan and Chloe for sharing their story and motivating the advocate inside of us all.