Parenting Your Child with Special Needs

WANT TO JOIN A COMMUNITY OF OTHERS WHO UNDERSTAND?

• Ever wanted to talk with other moms who have young children with complex medical issues?
• Do you wish you had someone to bounce some new ideas off of or hear from others who have dealt with the same issues you are facing with your child?
• Are you a mom trying to juggle work and family and home responsibilities AND make sure your kids get all the therapy they need?

Well, you have come to the right place! This is a community forum for moms who have young children with special needs and want a community to find resources, tips and camaraderie.

Interested in talking over the phone with moms who are dedicated to finding solutions and taking action? Join us twice a month for a discussion on topics of interest determined by you! We meet on the telephone using conference calling technology-meaning everyone calls in on a long distance number, punches in an access code on the phone key pad and everyone is connected to each other in a "virtual" room! It is amazing. I am  the facilitator and available to keep the discussion moving and positive. 

If you want more information about the virtual community group meetings, just email me!

Find out more about the Cleft Palate Foundation

Did you know...

• The most common birth defects in the US is Cleft lip and/or palate--1 in 600 babies.
• The Cleft Palate Foundation can refer you to interdisciplinary diagnostic and evaluations teams in your area
• There is a place you can go on the web which offers comprehensive information and support resources for families affected by the birth of a child with a cleft lip and/or palate

I recently met with some wonderful, dedicated people who provide information and support to families with children born with a cleft lip and/or palate. They work tirelessly to provide the most current information, resources and services available. The Foundation's mission, "To enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects" is carried out by providing resources which focus on topics such as "Feeding Your Baby," and listings by state of Cleft Palate and Craniofacial diagnostic and evaluation interdisciplinary teams. The website, www.cleftline.org, has information for both families and health care professionals and the helpline--1.800.24.CLEFT--provides callers with local support group resources. Check out the website and find answers to questions from the folks who care and are the recommended source for cleft lip and or palate information.

Genetics Linked To Premature Births

Posted on: Tuesday, 8 June 2010, 13:25 CDT

A large U.K. study found that women who were born prematurely, or had siblings who were, might be at increased risk of having a preterm baby themselves.

The study involved about 14,000 women who gave birth between the 1970s and 2008. The findings add to evidence that genes are involved in the risk of preterm delivery.

The researchers discovered that women who were born prematurely had a 35 percent to 49 percent greater chance of preterm delivery.

According to findings published in the journal Obstetrics & Gynecology, the risk to any one woman, however, was not great.

Nine percent of the women born prematurely had a premature baby themselves. That compared to just over 6 percent of women who had been born full-term.

According to an editorial published with the study, the findings are not going to change how women's pregnancies are managed.

Dr. William H. Barth Jr., of Harvard Medical School and Massachusetts General Hospital in Boston, told Reuters that women who were born preterm do not need to be considered high-risk for premature delivery and monitored with extra prenatal tests.

He says the findings are mainly of interest to researchers trying to uncover the reasons underlying preterm delivery.

Experts believe that preterm birth results from a complex mix of genetic susceptibility and environmental factors and behaviors. Some of those factors might be smoking and drug use.

Researchers found, in a recent study that analyzed nearly 1 million births in Sweden, that sisters of women who had delivered preterm had an 80 percent higher risk of early delivery, versus women without that family history.

There was no evidence that the increased risk shared by sisters was explained by non-genetic factors.

Sohinee Bhattacharya and colleagues of the University of Aberdeen used information from a database that has tracked births among Aberdeen-area women since the 1950s for the current study.

The team focused on births to 13,845 women whose own mothers were also included in the database.

The researchers found that women who had been born prematurely were 49 percent more likely than their full-term counterparts to have a premature infant.

Researchers are not sure exactly how genes influence preterm-birth risk. Genes that regulate the conditions of the uterus during pregnancy, for instance, may be involved. However, that still remains unknown.

According to the team, more studies are needed in order to determine which genes play a role in preterm delivery.

Time has passed so quickly

It's hard to believe it's been so long since Ive posted. Well, it's because I have gotten a new job, moved from Illinois to North Carolina, sent our youngest to college and finished publishing a book written with my parent coaching cohorts! PHEW!!!

The Book "Parenting By Strengths, A Parent's Guide for Challenging Situations" is available in paperback and as a download. Just click on the link and  to purchase or contact me for your copy. Let me know what you think!!!!!

Are You Living Your Life with Intention?

by Cathy Rodrigues
"If what you are doing is not your goal, it might as well be your goal."

I heard this statement and it struck me...What I am working on today--is it going to get me where I want to be in the future? The impact of this simple statement caused me to stop and think. This powerful notion made me think about the idea of "intention." What does this mean?  What is my purpose? How do I want to live my life? To that end I began a process of creating a personal mission statement.

Answering the following questions allowed me to begin the process of crafting my personal statement. The questions are adapted from the book, Find Your Purpose, Change Your Life: Getting to the Heart of Your Life’s Mission by Carol Adrienne:

I love to...
I am...
I would like to have more...
When I was a child, I wanted to be...
The qualities I like best about myself are...
What interested me today, this week was...
I keep being drawn to...
My working mission statement is...

Through this process I got feedback from my friends, family and co-workers which helped me validate my sense of who I am in addition to how I present myself to others. The whole process took some time but it was helpful, especially during the challenging times.

I found that I was able to create two statements:

"To be of service to others, bringing a sense of peace, joy and beauty into my life and those around me."

"Through my hands, I want to promote a sense of spiritual connection by creating gifts of beauty and joy for myself and those around me."

Let me know what you think and if yo want help to craft your own personal mission statement. Send me an email!
Cathy

Preemies Today Teleconference rescheduled for Friday, January 30th

Parenting and Discipline: The Impact of Prematurity on Sensory Development
The teleconference featuring JoAnn Kennedy OTR has been changed to Friday, January 30th at
2:00 ET/1:00 CT/ 12:00 PT.

If you tried to call in yesterday and got the wrong number, I must apologize for transposing the numbers in the prefix. I understand folks who called in got a very angry person on the line. Please do not let this deter you from participating. If you are interested, please send me an email and I can send you the correct conference number.

Stay warm,
Cathy

Preemies Today-Creating Holiday Traditions Podcast!!!

Last Monday, I co-led a tele-conference with Preemies Today founder Mary Beth Hazelgrove called Creating Family Traditions or How to Stay Healthy and have Fun Together.  With permission of the callers, the one hour meeting was recorded and theDownload Preemies today 121508 is available for listening at your convenience. As a follow-up, I compiled a brief handout which can be shared with family and friends explaining the issues with illness and how it can affect a premature baby.

Our next tele-conferences are scheduled for Friday, January 16th and 23rd, 2009 at 1:00 ET/12:00 CT/ 10:00 PT and we will be discussing discipline and the impact of prematurity on sensory development. Plan on joining us live and participating in the conversation. If you would like to register, send me an email!!!!

National survey shows impact of caring for a child with chronic disorder

AP: December 1, 2008: CHICAGO - More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids.

10 Tips to Make Your Thanksgiving Better--Thanksgiving Wishes

Today is Thanksgiving in the United States. It is a time to give thanks and share time with family and friends or the community. Here are some ways to help enrich your day that are easy and don't take a lot of effort or time.

1. Take the time to tell others that they matter
2. Savor the activities that you experience
3. Do one thing nice for someone that you love that is unexpected
4. Do something for others who have less than you
5. Share your favorite holiday stories with others
6. Create one tradition
7. Accept compliments that you get
8. Look others in the eye and smile
9. Take time to do one thing that you love that is just for YOU
10. Get outside for a walk and express your gratitude

Enjoy your day today and the days ahead. The great thing about these ways to make your Thanksgiving better is that they are things that you can do any day! Make your day the best it can be!!!!
Cathy

Infant Formula Notification

Every week I get news stories that are gathered from Google searches on prematurity. This morning I was looking though the stories and found a series of alarming stories on the use of Enfamil powdered breast milk fortifier

Formula For Tragedy: Milk-Based Powdered Formula

Powdered Baby Formula Could Be Dangerous For Some Infants

CHICAGO (CBS News) ― Connor McGray and his twin brother, Logan, were born prematurely on Nov. 16, 2007 at an Illinois hospital.

Connor appeared to be the healthier of the two. It wasn't until their parents, Amanda Carlin and Tim McGray of Somonauk, Ill., received a call from a doctor at the hospital a week later saying the infant was lethargic and refusing to eat.

Doctors discovered Connor had meningitis and "they basically told us, all we could do was pray," their parents recall.

On May 3, 2008, their baby died at home.

"He knows there's something missing," Amanda Carlin says of their surviving child, Logan, who turned 1 last week.

Officials listed the cause of death as hydrocephalus and bacterial meningitis. The bacterial infection, according to a memo from the Illinois Department of Public Health, "may be associated with the consumption of a powdered breast milk fortifier."

Pregnancy, Childbirth, and Parenting Depression During Pregnancy Can Double Risk of Premature Birth

It has been a while since I wrote on my blog. Thank you to my loyal readers. Here is another article I found which presents research on the impact of depression on premature birth.  Let me know what you think. I'll write more later!!
Cathy

 

 

   

                         By: Allie Montgomery    
    Published: Friday, 24 October 2008

            

                 

Mothers-to-be who suffer from depression have been shown to have twice the risk of delivering a premature infant than pregnant women that have no symptoms of depression. This risk for premature infants increases as the symptoms of depression become more severe.

In a new study, which is among the first to study depression and premature births in a representative and diverse population in the U.S., looked at approximately 791 pregnant Kaiser Permanente members that were in San Francisco City and county from October of 1996 through October of 1998. According to the researchers, the findings provide preliminary evidence that reproductive and social risk factors, stressful events, and obesity may exacerbate the depression-premature delivery link. Because the majority of the mothers in this study did not take anti-depressants, the study provides a clear look at the link between the premature delivery and depression.