Posts Tagged ‘resources’

Zika Care Connect website offers access to specialists

Monday, April 24th, 2017

Mom & BabyA new website has been created specifically to help families affected by the Zika virus. It’s called Zika Care Connect (ZCC).

ZCC offers a network of specialized healthcare providers who can care for families potentially affected by the Zika virus.

Developed by the Centers for Disease Control and Prevention (CDC) in collaboration with March of Dimes, the ZCC features resources for families as well as healthcare providers.

Through the ZCC, parents and providers can locate and find specialists to provide the unique care a pregnant woman or a baby with Zika needs.

ZCC helps pregnant women and parents of Zika affected babies (patients):

  • find services and providers in their location who take their insurance and speak their language;
  • find resource tools such as fact sheets and Zika checklists;
  • get answers to questions through a HelpLine as well as the FAQ page.

All ZCC network healthcare providers can:

  • stay up to date on the most recent clinical guidance issued by the CDC in order to manage and care for patients with the Zika virus;
  • receive patient resource tools including downloadable materials;
  • make and receive referrals to/from other providers within the ZCC network.

Why is the ZCC important to babies affected by Zika?

It is important that babies born to a mother who tested positive for Zika be evaluated thoroughly after birth, and regularly as they grow. Some babies do not show signs of being infected with the virus at birth, but they may have developmental problems as they get older. This is why babies need to be continuously monitored. If they need specialty care, it is important that affected babies receive help as soon as possible.

If a baby is born with a Zika-related birth defect, developmental delay or disability, parents may feel overwhelmed by their baby’s complex medical needs. They will require support and guidance as their baby receives medical care from multiple providers. Healthcare providers need to work closely with one another and the family, to monitor the baby’s development and coordinate care.

The ZCC can help parents and specialists by providing resources and a network of healthcare providers, all in one place.

Check out the Zika Care Connect website:  www.zikacareconnect.org.

Call the ZCC Helpline 1-844-677-0447 (toll-free), Monday – Friday, 9am – 5pm EST, to get answers to questions and get referrals to healthcare providers.

With ZCC, pregnant women and families may now get the medical help and support they need.

Have questions? Text or email AskUs@marchofdimes.org.

How to find a specialist for a birth defect or rare disease

Wednesday, March 23rd, 2016

Contemplative woman with babyWe often receive inquiries from individuals asking for help finding information and resources for their child’s particular birth defect or medical condition. If a baby or child has a rare disease, the family may have an especially difficult time finding a specialist who is experienced with the disorder.

Here are some organizations that offer resources:

  • The Genetic and Rare Disease Information Center  – “GARD” provides links on how to find a disease specialist, a treatment center, a genetics clinic, researchers, and finally how to navigate the process of trying to get your child diagnosed.
  • The National Organization for Rare Disorders  – “NORD” maintains a database of diseases and provides detailed disease explanations and support group resources to patients and families.
  • Disease Infosearch (part of Genetic Alliance) – They provide disease information as well as support group resources.
  • The NIH Undiagnosed Diseases Program – This is an invitation-only program for patients whose conditions “have eluded medical diagnoses.”

With any condition, finding the appropriate health care provider may make all the difference in the world. We suggest that families speak with their child’s health care provider and specialist so that together, they can establish the best course of treatment for their child.

Have questions? Send them to AskUs@marchofdimes.org.

 

March of Dimes NICU Family Support® program offers services to thousands of families every year

Wednesday, September 23rd, 2015

Nurse and mom in NICUNow in its 14th year, this unique program offers comfort, support and information to families who have a baby in the NICU (neonatal intensive care unit) at over 120 hospitals across the U.S.

Babies in the NICU may have been born too small, too soon, or with a medical condition that requires intensive care. Throughout the NICU experience, parents can be involved in their baby’s care in a variety of important ways. The March of Dimes developed the NICU Family Support program to help support NICU families during their baby’s time in the NICU. The program also educates NICU staff about the best ways to support babies, families, and each other.

Specialized materials for long and short NICU stays

Hospitals with a NICU Family Support program are able to offer their families relevant, NICU-specific materials including a keepsake booklet, a guide for parenting in the NICU, and a NICU guide and glossary. As part of the program, hospitals also receive information for extended family members such as grandparents and siblings.

There are also materials for families whose babies stay in the NICU less than 14 days, a common experience that can also be very frightening and stressful.

Families can access March of Dimes NICU resources online from any device with an internet connection, in both English and Spanish. Topics include medical care, understanding equipment, how to hold and feed your baby in the NICU, becoming an informed parent, and many other important subjects.

Hospital staff education

NICU Family Support also provides ongoing education for hospital staff. This education focuses on best practices in supporting families, and the benefits of appropriate family-centered care for NICU babies at every stage of development. Training for staff is based on best practices and evidence based care, to help support them in their important role.

Parent to Parent online community

Support from other parents can be found on our online community, Share Your Story where current and “graduate” NICU parents reach out to help guide and comfort one another. Parents can log on and post a comment or question to join this warm and inviting group.

 

Have questions? Send them to AskUs@marchofdimes.org.

See other posts on how to help your child including how to transition from the NICU to Early Intervention services.

 

Helping babies with FASD

Wednesday, April 8th, 2015

baby in distress

Drinking alcohol during pregnancy can cause your baby to have serious health conditions, called fetal alcohol spectrum disorders (FASD). Alcohol can also cause your baby to:

• Be born too soon (prematurely)
• Have birth defects (heart, brain and other organs)
• Have vision or hearing problems
• Be born at low birthweight
• Have intellectual disabilities
• Have learning disabilities
• Have sleeping and sucking problems
• Have speech and language delays
• Have behavioral problems

What can you do?

The earlier a child is diagnosed with FASD, the sooner interventions can begin, and the child can start making progress. Special services that can help a child with FASD include early intervention, special education, speech therapy, occupational therapy, physical therapy and other services. This blog series can help you learn how to access services for babies and toddlers or children ages 3 and older.

Not all babies born with FASD will experience alcohol withdrawal symptoms. According to Mother-to-Baby, “There are reports of withdrawal symptoms in infants whose mothers consumed alcohol near delivery. Symptoms included tremors, increased muscle tone, restlessness and excessive crying…Once your baby is born, it is also recommended you tell your pediatrician about your alcohol use during pregnancy. Your baby can be evaluated for effects of alcohol exposure. Services and support are available for children with alcohol related problems.”

Additional resources

The FASD Center for Excellence has information, including screening, diagnosing, intervention programs and resources.

The National Organization on Fetal Alcohol Syndrome (NOFAS) has a resource list and several fact sheets that may be very helpful to parents of children with FASD, such as FASD Identification.

March of Dimes’ role

In 1973, March of Dimes grantees were the first to link drinking alcohol in pregnancy with a specific pattern of birth defects and intellectual disabilities they called Fetal Alcohol Syndrome. Since then grantees have continued to study how alcohol harms the developing brain, and to discover better ways to prevent and treat FASDs in alcohol-exposed babies.

Here is more information, including resources on how to quit drinking alcohol. The good news is that FASD is entirely preventable by avoiding alcohol during pregnancy.

If you have questions, please send them to AskUs@marchofdimes.org. View other posts in the Delays and Disabilities: How to get help for your child series, here.

 

Oh to be understood!

Wednesday, March 18th, 2015

child learning to readHelping a child with attention or learning problems is a feat that most parents find intensely challenging. You may know that your child is bright, yet she can’t seem to keep up with her peers at school and is becoming increasingly difficult to manage at home.

Children with disabilities have a hard time expressing their frustrations, as they don’t fully understand what they should be doing. As a parent, you have expectations for your child, but you don’t see what they see. You can’t fully grasp their struggle.

In order to help your child, you first need to have an accurate idea of what she is experiencing. By getting in her shoes, even for a little while, you will develop an appreciation for her struggles, and have a starting point from which to start your journey of setting up interventions.

What if you could see what your child sees?

I’d like to introduce you to a novel web based resource for parents of children with learning or attention issues, called (appropriately) Understood. Developed by a team of professionals from the National Center for Learning Disabilities along with lots of input from parents, they created a digital resource that can show you what your child is “seeing.”

The section entitled “Through your child’s eyes” has simulations to help you understand your child’s struggles with organization, attention, reading, writing or math. Once you can see what your child sees, and feel what she feels, it will help you to find patience when you thought you had none, and find energy to create an appropriate program for her.

When my daughter first went to a school that specialized in teaching children with learning disabilities, one of the exercises the parents had to do was similar to one on this website. Even though it took place many years ago, I remember it to this day. It was eye opening and mind boggling. We parents had NO IDEA our kids were seeing the world the way they were, and were faced with such a huge mountain to climb every day. Many of us felt guilty – we simply did not know the pain our kids were in every day. But, how could we have known? Until we were shown exactly how our kids were struggling, we did not truly understand. Life changed for me after that day. I had a different perspective and attitude about my daughter’s disability, not to mention a newly discovered abundance of patience that I did not know I possessed.

The simulations on Understood will help you to see the world through your child’s eyes, so that you can develop patience, empathy and most importantly an action plan specific to your child’s needs.

For other posts in this series, see the Table of Contents.

IEP reviews in April

Wednesday, April 9th, 2014

meetingIf your child has a disability and has an IEP, you may already know that April is usually the month when mandatory yearly reviews and IEP updates happen.

An IEP is short for Individualized Education Program. It is both a process and a written educational plan for a child with a disability age 3 and older. It is a document that lists all of the educational services that your child will receive, if he qualifies. Here is a quick review and resources to help you with the process. (See prior posts, for info on IFSPs for babies and toddlers.)

The IEP is:

INDIVIDUALIZED – specific for your child’s needs. It is not one size fits all.

EDUCATIONAL – it should look at three main areas of your child’s life:  the general education curriculum, extracurricular activities and nonacademic activities.

A PROGRAM or PLAN – all of the services your child will receive are laid out and detailed in writing.

What’s in an IEP?

The IEP may include special education, related services and/or supplementary aids and services. The IEP is first based on your child’s “present levels” which is a snapshot of your child’s function. In other words…what he is able to do now as compared to his non-disabled peers. Then, based on his present levels and his delay or disability, the IEP sets measurable annual goals.

The IEP should specify:

• Who will provide the service (eg. the speech therapist, regular ed teacher, special ed teacher, reading specialist, physical therapist, etc.).

• What kind of service will be provided, such as curriculum modifications or adaptations, the types of related services or aids- (eg. specialized reading curriculum, speech therapy etc.).

• Where the service will be implemented (eg. the regular ed classroom, playground, counselor’s office, etc.).

• When parents will receive reports on how well your child is doing. By law, you need to receive progress reports at least as often as children without disabilities. Often a school system will send home the IEP progress reports with Report Cards.

• When the goal will be achieved (eg. by the end of the marking period or by the end of the year).

• How the goal will be measured and how you will know the goal has been achieved (eg. a benchmark, such as a test score that shows if the goal has been reached).

Remember, an IEP is a living document that can be changed or updated by the IEP team, of which parents are members! It must be reviewed by the IEP team at least once a year, but it can be reviewed and updated more often if necessary.

Need more help?

A great place to go to understand your options and how to prepare for IEP meetings is on the website of the Center for Parent Information & Resources (CPIR). In particular, you can find guidance on how an IEP team can write IEP goals.  Fortunately, you can find help by visiting your state’s Parent Training and Information Center (PTI), which is an information resource for parents of children with disabilities. Every state has at least one PTI. Each one has a different name. For example, one of the PTIs in California is named Matrix Parent Network and Resource Center while the PTI in New Hampshire is called the Parent Information Center. Whatever the actual name, each is commonly known as a PTI.

Some states also have Community Parent Resource Centers (CPRCs). CPRCs do the same work as the PTIs, but they focus on reaching underserved parents of children with disabilities, such as those living in a specific area in the state, those with low income, or those with limited English skills. Locate your state’s Centers  and read more about how PTIs and CPACs can help you.

You can also find excellent guidance on how to write IEP goals at Wrightslaw.

Lastly, review previous News Moms Need blog posts to zero in on where you need a refresher. Here is a Table of Contents of many prior posts, including several on IEPs.

Bottom line

April not only brings showers for May flowers; it is the month when most school systems begin reviewing and tweaking IEPs. With the resources in this post, you will be prepared and ready to play an active role in the process.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input. If you have questions, please send them to AskUs@marchofdimes.org.

An easy way to find resources for special needs kids

Wednesday, June 5th, 2013

computer-mouse_thmFinding the right resource to help your child with special needs is so important for a parent. It can be a lifeline. I would like to introduce you to one resource that is a sort of clearinghouse to multiple resources. NICHCY, the National Dissemination Center for Children with Disabilities is no longer in operation, but their information has been migrated to the Center for Parent information (CPIR).  Here you will find tons of information that should be bookmarked on your computer.

On this page you can find a gateway to resources are specific to a particular topic. There are dozens of topics which will bring you to desired resources. Exploring could not be easier.

So, let your mouse do the clicking and find many organizations and resources that are on target for your particular question.  Simplify your life with this tool and perhaps you will find a gem or two that you did not know about, which will make a difference in your child’s life…and yours.

Have questions? Send them to AskUs@marchofdimes.org.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

A new blog series is here

Wednesday, January 16th, 2013

polio-poster-for-blog6Having a baby is a wonderful journey. It is filled with unexpected joys, moments of laughter, pride and boundless love.  But what happens if something goes wrong?  Or, if you suspect that something is not right with your baby or child?  What should you do?

The first thing to realize is that you are not alone. There are many parents out there who have been (or are) in your shoes. This blog series will give you the knowledge you need to help you deal with the unexpected. It will take you from the beginning (when you suspect or confirm that something is not going according to plan), right up through your baby’s childhood to help you navigate the choppy waters. Hopefully, with this “GPS,” you will feel in control of your journey.

If you are reading this blog post, you may suspect that something is not right with your baby or child. But, you may not want to take the next step because you are cautious about labeling your child, or you are simply afraid of the road that you may end up going down. Well-meaning grandparents, relatives or friends may tell you that your child is fine, marches to a different drummer, needs discipline or time. That may all be true, but you know your child best.  If you think that there is a chance that your baby is struggling or is delayed, then the best gift you can give your child is the help he needs to catch up – as soon as possible.

Time matters.

In many cases, babies and young children qualify for “early intervention services” based simply on a “developmental delay” and a more detailed diagnosis is not necessary to receive helpful services.  So, “labeling” your child may not be an issue at all. Try not to worry about what other people may think; just concentrate on getting your child help.

Why this blog?  Why March of Dimes?

The March of Dimes’ history is lengthy. Since 1938 we have been working tirelessly to improve the health of babies and children.  President Franklin Delano Roosevelt (FDR) founded the March of Dimes to defeat polio, a crippling disease that afflicted him. Success came in the form of a vaccine which protects children from polio to this day.  FDR was an outstanding advocate for the disabled, and knew all too well how a disability affects not only an individual, but also his/her family and society.

After polio, the March of Dimes went on to fund some of the greatest medical advances of the 20th century.  In fact, our work has been recognized with 13 Nobel Prizes (that could be its own blog series!).  But I digress…The point is that inherent in the March of Dimes is the goal to help babies and children live healthier lives. So, helping parents find resources for their children when things go wrong fits right in with our mission.

Why me?

As I write this blog, my personal story may unfold from time to time. I am a parent of two children – a boy and a girl – one with special needs. How I wish I had had a blueprint to follow when my daughter was a toddler experiencing “developmental delays!”  I was lost and frankly clueless. I took parenting classes, went to support groups and of course took my daughter to countless doctors. There was no Internet to “Google” a diagnosis or find support groups. Nevertheless, I muddled through, and amassed an enormous amount of information along the way.

Now, I want to share my knowledge with you so that you can be an informed parent and educated advocate for your child.  Additionally, as a Health Educator with a Masters degree in Health Science, I hope to bring a perspective that provides a combination of “I get it – I’ve been there” with a factual blueprint for you to follow.

My kids are both in their 20’s now, and I have to say I would not trade in this journey for the world. My special needs baby girl is a college graduate and despite the fact that she may always experience more bumps in her road than the “typical kid,” she has done remarkably well. She also sends a message to all parents with kids with “issues” to focus on their children’s gifts and strengths, and in time, you will see that they will blossom to be the best they can be. Never say never!

Check out the drawing of a polio victim holding a photo of FDR. The hard-to-see caption reads “We polios can fill almost any job.”  To me it speaks volumes. If an individual afflicted with polio could be our nation’s president for four terms, it is time to look beyond the disability and see the ability in everyone.

So, stay tuned for the upcoming series Delays and disabilities – how to get help for your child. It will appear every Wednesday. We will love to hear your comments and input!

 

Updated January 2017.

Remembering September 11th

Thursday, September 11th, 2008

This is not an easy day for any of us. I was just contacted by a former co-worker reminding me of that morning we spent together seven years ago. I know of three people who lost there lives that day. My brother is doing his second tour of duty in Afghanistan.  My brother-in-law was supposed to start a new job in Tower 1, but was asked to attend an orientation off-site that day. My husband, a medical student at the time, waited in an uptown hospital for patients that would never come. The Peace Corps office was down there. It was 1997 when I had my interview. I’m sad it’s not there anymore.  That night unable to sleep, I walked down to the shore of the Hudson River from my Bronx apartment. I looked south to the very changed Manhattan sky line and sobbed. Things would never be the same again.

To all of the families, mothers and children who were affected by this horrible tragedy, you’re in our thoughts and prayers today and always.

For information and support, please visit http://www.911families.org