Family Team News

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Wednesday, November 27, 2013

Turning 3 - the leap from early intervention to special ed

Is your little one currently in an early intervention program but going to “age out” because her third birthday is fast approaching? If so, here’s what you need to know to make the leap as smooth as possible.

It really all boils down to planning. ..or rather, planning ahead. If your toddler has been receiving early intervention (EI) services for a developmental delay or disability, when she turns 3 the service provider will change to your local school district. The part of IDEA (the law) that supports these services changes from Part C (early intervention for babies and toddlers) to Part B (special education for children ages 3 – 21). Part C is very family focused, while Part B is more school district focused. The result is that you may feel like you are not as much a part of the process, but you still are - most definitely!
How does the change take place?

While your child is still in Part C’s EI program, her service provider should refer her to the Part B system coordinator to start the process. Your school district will need to see if your child still qualifies to receive services. Determining eligibility may include observations, testing or evaluations, and meetings to discuss her current and future needs. If she meets criteria to continue receiving services, her IEP should be developed while she is still in her Part C program, so that when she turns 3, her IEP takes effect immediately.
To help ensure a smooth transition, the law requires that transition planning begin at least 90 days (and not more than 9 months) before your child reaches her third birthday. The transition plan must be outlined in your child’s IFSP (her early intervention plan). Ideally, the transition plan should begin much earlier than 90 days – perhaps 6 months before her birthday. For a sample of what transition goals would look like on your child’s IFSP, see Wrightslaw’s Model IFSP . You can read more about what is required by law in the transition process, in the Part C Final Regulations, starting on page A-8.

What will help your child handle the change?

Include your child in the process, to a degree. Visit the new site once or twice before the first day of school and have your child meet her new teacher. This visit can be tremendously helpful in lessening fears of the unknown.

NICHCY has a great page on smoothing the transition from EI to preschool. Be sure to check it out. In particular, they recommend the article Entering a New Preschool: How Service Providers and Families Can Ease the Transitions of Children Turning Three Who Have Special Needs. It includes tips for before, during and after the shift to the new placement and explains LREs. It even has a list of recommended books that you can read to your little one to help prepare her for the transition. It may be an “oldie” but it is a “goodie” when it comes to the timeless information it provides.
What should you look for in a new placement?

• The least restrictive environment (LRE), where to the extent possible, your child is educated with children who are not disabled; and
• A place where your child’s individual needs can be met.
Remember, an IEP means Individualized Education Plan/Program. Individualized is the key word here. It should be designed to meet your child’s unique needs. It should also be provided in the least restrictive environment. This LRE may be your child’s day care center or preschool, if possible. (Learn more about LREs here).

Where can you find support and resources?
Again, NICHCY has gathered support and resources for families, childcare providers, and educators here. NICHCY discusses services that are available for preschoolers who are experiencing developmental delays and disabilities.


 

Bottom line
Life is full of change and transitions. The leap from EI to special ed is definitely a big one, but with careful planning and preparation, it can be a smooth journey. By being an informed and educated parent, you will help to make the process easier for your little one, and yourself.

Have questions? Send them to AskUs@marchofdimes.com.
Tags: child, delays, disabilities, early intervention, IDEA, IEP, IFSP, least restrictive environment, LRE, Part B, Part C, Preschool, special ed, Special needs, transition, turning 3

Source: NewsMomsNeedat marchofimes.com

Tuesday, November 26, 2013

Shopping for toys for kids with special needs

With the holiday season fast approaching, shopping for gifts for kids is upon us. When you have a child with special needs, relatives and friends may not know the kind of gift they should get for him. The toys that a typically developing child would be able to handle or enjoy may not be the same for a developmentally challenged child. Yet, kids with challenges enjoy playing with toys just as much as their typically developing peers. What can you do?

Toys for developmentally delayed children
There are companies that offer product lines that cater specifically to kids with special needs. Toys may not be labeled with age ranges because a child with delays may enjoy a toy that is originally targeted for a younger child. If a company does label toys with age ranges, pick out a toy with an age range that corresponds to your child’s developmental age or adjusted age (if he is a preemie), not his chronological age. You have to remember that you need to look at your child as he is right now, and pick out a toy that suits his particular interests and abilities at this point in time. You don’t want your child feeling frustrated by not being able to play with a toy. Toys are meant to bring happiness, not frustration.

Companies may group toys by categories, such as toys that provide sensory stimulation, or those that are geared for kids with fine or gross motor issues, speech delays, etc. With a little online searching, you are bound to come up with lots of appropriate choices for your little one.
Shopping for the holidays…NOT!

Tis the season for shopping, but taking your child to the mall or busy stores may prove to be more tension building than it is worth. This is the time when catalogs and online shopping can be a lifesaver. When your tot is napping, with Daddy, or after he has gone to sleep, whip out the laptop or catalogs and let your fingers do the shopping. You can shop from the comfort of your home with your fuzzy slippers on. If you shop early enough, many companies offer free shipping. Sparing your child the intensity of hours at the mall could be the best gift you give to him AND to you!
Of course, there will be times when you want to take him to the mall, for holiday photos or just to witness the festivities. But, try to keep the visits short, so that your child does not get overloaded. You know your child best – you know the warning signs of when a fuse is about to blow. Heed the warnings early on, so that your fun does not end up becoming a fiasco.

Keep it to a low roar
The holidays are a time when a child can easily feel overwhelmed. Too many new toys and new items at one time can put your little one on stimulation overload. Even just the noise and activity of wrapping paper being ripped off and strewn about can create tension. Try to keep the excitement to a low roar so that your little one can absorb and enjoy the festivities without unnecessary stress.

Bottom line
With a little planning and extra vigilance, you can not only get through the holidays – you and your child can enjoy them!
Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January and appears every Wednesday. Archived blog posts can be found on News Moms Need under “Help for your child.” As always, we welcome your comments and input.

Have questions? Send them to AskUs@marchofdimes.com.
Tags: Baby, birth defects, child, delays, disabilities, gifts, holidays, shopping, Special needs, stress, toys

Source: NewsMomsNeedat marchofimes.com
 

Monday, November 25, 2013

Breastfeeding is not easy

It seems like a secret that no one tells first time moms. Info abounds about how good breastfeeding is for your baby so you’ve decided that, since you only want what’s best for your baby, you’re going to breastfeed. You’ll be the breastfeeding champ – the poster mom for breastfeeding! And then after three or four days of trying it, you’re almost ready to give up. HELP!

Breastfeeding problems are extremely common among first-time moms, often causing them to introduce formula or completely abandon breastfeeding within two months, report researchers at the University of California, Davis, and the Cincinnati Children’s Hospital Medical Center.

The study found that although 75 percent of mothers in the United States initiate breastfeeding, only 13 percent of those women ultimately breastfeed exclusively for the recommended first six months of the child’s life. The most common concern was that the babies were not feeding well at the breast (52 percent), followed by breastfeeding pain (44 percent) and perceived lack of sufficient milk (40 percent). Education and support are key to turning these numbers around.

If you’re pregnant for the first time or planning a pregnancy, get some upfront facts about breastfeeding challenges. Talk to a lactation consultant, contact La Leche League, before you deliver as well as once the baby arrives. The first two weeks of breastfeeding are crucial for getting good guidance and support. Don’t feel like you should be able to do this on your own. It’s not like falling off a log – it takes education and work. Prepare for challenges because there likely will be some. (Who would have thought breastfeeding could hurt?!) Don’t despair and throw in the towel. Be prepared to work through ups and downs. With help and after perhaps several weeks of effort, for most women, everything should click into place.

Source: NewsMomsNeedat marchofimes.com
 

Friday, November 22, 2013

Bracing for the holidays

If you have a child with special needs, chances are you may find holidays especially stressful. Any difference in routine may make your child anxious and his behaviors may change dramatically. Many kids with special needs seem to be extra in-tune with change. Entertaining extended family, driving to/from relatives’ homes or visiting friends can strike terror in a parent’s heart. Once you remove your little one from his routine and the “sameness” of his world, who knows what will happen!

What can you do? Here are some tips:
Simplify, simplify, simplify.

• Limit holiday dinners – either stay at home and keep guests to a minimum, or travel only short distances to see familiar friends and relatives.
• Keep dinners short and get home before crankiness sets in.
• If you are doing the cooking, limit the amount you do. Two side dishes are just as delicious as five. Ask guests to bring a dish all ready to serve. Supplement your sides or desserts with store or bakery bought items.
• Keep noise to a minimum (music, loud TV) as many kids find the auditory stimulation painful or anxiety provoking.


Know your child.
• Know your child’s limits – if he can only sit at the table for 10 minutes at a time before needing to get up, only have dinner with friends/family who understand his needs.
• Provide ample quiet time for your child to re-charge his batteries. He may need more quiet time than usual to process all the stimulation and confusion around him.


Sameness helps…a lot.
• Try to keep bedtime routines and lights-out time the same every night.
• Holidays are not the time to start new routines. Stick to what your little one knows.
• Often wearing a new outfit will produce a negative reaction in a child. If you want your child to wear a new outfit for a holiday dinner, let him see and even wear the outfit at least one time before the dinner, so that he can get used to it.


Reward, reward, reward.
• Reward positive behaviors. This is the time to heap praise on your little one for all the things he gets right. Change is hard for him, so let him know you recognize and appreciate it when he does well.

Rest up
• Expect that things will be bumpy, and be sure you are well rested to handle the bumps. Your little one will pick up on your anxiety and stress. And you will be more stressed-out if you don’t get enough sleep. So, let getting enough sleep be a priority for you.

Bottom line
Remember – less is more. The goal of a holiday dinner is to enjoy time with family and friends. If you keep things simple, you will find that you will enjoy it more, and your child may enjoy it too! The key is for everyone to be as relaxed as possible. Try to keep your perspective and don’t sweat the small stuff.

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 menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.
Have questions? Send them to AskUs@marchofdimes.com.

Wednesday, November 20, 2013

Helping you on a local level

 
Working with our partners, the March of Dimes strives to develop and implement local programs that will ultimately improve the health of babies. Through our network of chapters and volunteers, these programs reach over a million people across the country and Puerto Rico each year. We provide information and services designed to prevent premature birth and birth defects and to promote healthy pregnancies.

Community grants are awarded annually to fund the best programs. Local programs like Centering Pregnancy®, group prenatal care, are focused on improving the availability and quality of health care. We also support services that help promote the health and well-being of women and couples before pregnancy to increase their chances of having a healthy baby. Other programs educate doctors and nurses about reducing the rates of elective labor inductions and c-sections before the 39th week of pregnancy.

Through NICU Family Support®, we provide information and comfort to families coping with the experience of having a baby in a newborn intensive care unit (NICU). NICU Family Support complements and enhances family-centered care practices in partner hospitals, addresses the needs of families and provides professional development to NICU staff.

And the staff in our Pregnancy & Newborn Health Education Center answers your health related questions that come in on our News Moms Need blog, Facebook pages, Twitter accounts, Share Your Story community and direct emails sent to Askus@marchofdimes.com. We’re here to help.

Monday, November 18, 2013

Preterm birth rate drops to 15-year low

The United States’ preterm birth rate dropped for the sixth consecutive year in 2012 to 11.5 percent, a 15-year low.

Six states – Alaska, California, Maine, New Hampshire, Oregon and Vermont – earned an “A” on the March of Dimes 2013 Premature Birth Report Card as their preterm birth rates met the March of Dimes 9.6 percent goal. The US preterm birth rate improved to the lowest rate in 15 years, but the change wasn’t enough to earn it a better grade. The nation again earned a “C” on the Report Card.

The March of Dimes estimates that, since 2006, about 176,000 fewer babies have been born too soon because of improvement in the preterm birth rate, potentially saving about $9 billion in health and societal costs.

“Although we have made great progress in reducing our nation’s preterm birth rate from historic highs, the US still has the highest rate of preterm birth of any industrialized country. We must continue to invest in preterm birth prevention because every baby deserves a healthy start in life,” says March of Dimes President Dr. Jennifer L. Howse. “A premature birth costs businesses about 12 times as much as uncomplicated healthy birth. As a result, premature birth is a major driver of health insurance costs not only for employers.”

The national preterm birth rate peaked in 2006 at 12.8 percent after rising steadily for more than two decades, according to the National Center for Health Statistics. The 2012 rate is a 10 percent improvement since the 2006 peak and the best rate since 1998. When compared to 2006, almost all states had lower preterm birth rates in 2012.

Want to see how your state measured up? The Report Card information for the U.S. and states are available online at: marchofdimes.com/reportcard.

Friday, November 15, 2013

Twitter chat on losing a baby

Tiffany Bowen, wife of Stephen Bowen of the Washington Redskins, went into labor at 24 weeks. She was expecting twins, not an emergency c-section. Two tiny babies were born and struggled for weeks. One of their boys survived, Skyler did not.

 
Join us @modhealthtalk for a chat about losing a premature baby on Monday, Nov. 18 at 8 PM ET. Tiffany Bowen, @Skylersgift, will be our guest. Come listen to her story and share your own. Find out how Tiffany and Stephen have used their experience to help others through Skyler’s Gift Foundation. Share your experience. Be sure to use #losschat so others can see your story.

Wednesday, November 13, 2013

The Heard Family’s Story

After a full term pregnancy, we felt that we were ready for another. We tried and unfortunately miscarried but then tried again. We conceived and found out we were having identical twin boys. This news took on its own life, we were so filled with excitement, nervousness and joy. I could not control the utter joy and started buying 2 of everything; car seats, double stroller, cribs, clothes. 

At 24 weeks, I was taken by ambulance to the hospital. Cody, the bigger of the twins, flat lined in utero, and code blue took us running off to the ER for an emergency C-section. Cody's heart had stopped. I remember thinking...what is going on. This is not how it is supposed to be. The boys had Twin-to-twin transfusion syndrome (TTTS). 

Our identical twins were born at 24 weeks; Cody weighing 1.6lbs, and Dalton weighing 1.2lbs. Most babies cry when they are delivered but our room was quiet.  The twins were whisked off to the NICU, both extremely sick. We became doubled over in worry and scared for our babies. We spent countless hours at bedside with them, praying, singing, and talking to them. After 3 long days, we got the call to say Good-bye to Dalton. I now call this "the longest walk of my life." This walk started in a wheelchair with my husband pushing me but then I finished the walk on my feet; almost like I had to fight for him, hoping for a miracle. Nothing prepared me for this moment. We held him for what felt like hours and then we kissed his fragile lips and said Good-bye. This was also the day of my husband's birthday with the next day being Fathers Day.

 By some miracle, within an hour of Dalton's death, Cody then peed almost 27 ccs. This was
 a sign of hope. I left the hospital soon after with no babies, no balloons, no joy. Cody was still very sick and we had to plan a funeral. We had to find a casket, make service arrangements, pick out an outfit for Dalton’s final resting place and all the while having sets of two of everything in the "twin room" at our home. It was agonizing and so incredibly painful. Our joy in that room had somehow turned into such sorrow.
 
After the funeral, we continued to visit Cody everyday in the NICU for 143 days he had many ups and downs, various scares of illness, and we finally brought him home with oxygen support. I remember asking if this was truly our life.....What happened to all that joy we felt just 5 months prior....We were so confused. From that point on, I began reaching out to find support. It was overwhelming, chaotic, scary and most of all painful. While we celebrated every single joy we had in our life, our oldest son, Luke and our surviving twin, Cody....we were just numb with pain. 

The March of Dimes helped us in various ways through out this journey. During our NICU
stay, the NICU Family Support Specialist, Sarah, from the March of Dimes would always be walking around. I can remember countless times of her walking by, asking how I was or if I needed anything. We were in such chaos I always turned her down, but she was there, offering help and support. We have always participated in March for Babies to honor our journey, but we decided to join NICU Parent Advisory Council (NPAC), which is a family support team. They welcomed us and all our input. We were so grateful for their openness to our voices about our experience in the NICU. The team listened and heard our concerns loudly enough to begin advocating. We helped develop programs; such as The Butterfly project, A Place to Remember at the March for Babies, and a Loss Resource List.  These changes took place because of the March of Dimes advocating for what the parents have to say. These changes have helped other families and continue to become a part of what March of Dimes provides for families that have lost a child.

Monday, November 11, 2013

What causes Down syndrome?

Down syndrome is caused by extra genetic material from chromosome 21. Chromosomes are the structures in cells that contain the genes.

Each person normally has 23 pairs of chromosomes, or 46 in all. An individual inherits one chromosome per pair from the mother’s egg and one from the father’s sperm. When an egg and sperm join together, they normally form a fertilized egg with 46 chromosomes.

Sometimes something goes wrong before fertilization. A developing egg or sperm cell may divide incorrectly, sometimes causing an egg or sperm cell to have an extra chromosome number 21. When this cell joins with a normal egg or sperm cell, the resulting embryo has 47 chromosomes instead of 46. Down syndrome is called trisomy 21 because affected individuals have three number 21 chromosomes, instead of two. This type of error in cell division causes about 95 percent of the cases of Down syndrome.

Occasionally, before fertilization, a part of chromosome 21 breaks off during cell division and becomes attached to another chromosome in the egg or sperm cell. The resulting embryo may have what is called translocation Down syndrome. Affected individuals have two normal copies of chromosome 21, plus extra chromosome 21 material attached to another chromosome. This type of error in cell division causes about 3 to 4 percent of the cases of Down syndrome. In some cases, the parent has a rearrangement of chromosome 21, called a balanced translocation, which does not affect his or her health.

About 1 to 2 percent of individuals with Down syndrome have a form called mosaicism. In this form, the error in cell division occurs after fertilization. Affected individuals have some cells with an extra chromosome 21 and others with the normal number.

The risk of Down syndrome increases with the mother’s age. Even though the risk is greater as the mother’s age increases, about 80 percent of babies with Down syndrome are born to women under age 35. This is because younger women have more babies than older women.

To learn more about Down syndrome and the types of health problems someone with Down syndrome might have, read this article.


Wednesday, November 6, 2013

Bon Ton Community Day Coupon!

Purchase a $5 Community Day coupon booklet online to be used at the Bon-Ton family of stores (Bon-Ton, Bergner’s, Boston Store, Carson’s, Elder-Beerman, Herberger’s, and Younkers) on November 15 & 16.  100% of your donation will benefit the March of Dimes, so you can feel good going shopping and giving back!


This valuable coupon booklet includes the following great deals:

    First time ever, Community Days coupons can be used on Bonus Buys!
  • Booklet contents worth over $500!
  • A $10 coupon to use on an item of $10 or more.
  • A shopping pass to save up to 25% off, shop online or at your local store.
  • A 30% off Early Bird Coupon valid BOTH DAYS until 1pm.
  • Coupon offers for extra dollars off on items throughout the store!
  • A Web Exclusive Offer, plus free shipping on November 15 & 16
  • Plus, the booklet is filled with great items to use your coupons on.

To designate March of Dimes as your charity, select the LaVale, MD store at checkout and click on Western Maryland Division March of Dimes.

Booklets can also be purchased directly through the Western Maryland Division office by contacting Jessica Wagoner at 301-723-7263 or jwagoner@marchofdimes.com. Also, if you are interested in helping to sell booklets in-store at the LaVale or Hagerstown Bon-Ton locations, please contact Jessica Wagoner.
http://bit.ly/15Z2ORC

Monday, November 4, 2013

What is a Pediatric Neurologist?


 A Pediatric or Child Neurologist specializes in treating problems of the brain, spinal cord, nervous system and muscles, in babies and children up through young adulthood. The word “neuro” refers to nerves or your nervous system. (Nerves help to carry impulses between different parts and organs of your body.) A Pediatric Neurologist may be an important doctor in your child’s care if your child is experiencing particular challenges.

The American Academy of Pediatrics (AAP) says “Child neurologists often diagnose, treat, and manage the following conditions:


• Seizure disorders, including seizures in newborns, febrile convulsions, and epilepsy
• Medical aspects of head injuries and brain tumors
• Weakness, including cerebral palsy, muscular dystrophy, and nervemuscle disorders
• Headaches, including migraines
• Behavioral disorders, including attention-deficit/hyperactivity disorder (ADHD), school failure, autism, and sleep problems
• Developmental disorders, including delayed speech, motor milestones, and coordination issues
• Intellectual disability (formerly called mental retardation)
• Hydrocephalus.” (extra fluid surrounding the brain and spinal cord)
A Pediatric Neurologist is a highly qualified specialist who went to medical school and then completed at least 1 or 2 years in a pediatric residency, and then 3 or more years of advanced training in a neurology residency. Most Pediatric Neurologists have attained board certification from the American Board of Psychiatry and Neurology.

What should you expect at your child’s first visit?

During a visit with a Pediatric Neurologist, the doctor will take a full history of your child which may include details of your pregnancy and the birth of your baby. The doctor will want to get a full picture of your child to be able to help him. The doctor will speak to you (the parent) and your child if he is old enough to understand and speak.

The doctor will examine your child and check his reflexes, nerves, balance, strength and motor function, and his overall senses. After a thorough examination, he will discuss next steps. He might prescribe additional tests to give him more information, such as an EEG (Electroencephalography) which measures brain wave patterns, and is helpful in diagnosing certain disorders. Once all test results are in, the doctor will discuss his findings with you. He will probably send a letter to your child’s Pediatrician or Family Doctor, with his findings and suggestions for future treatment.
It is always a good idea to bring a list of your questions with you when your child sees a doctor. It can be distracting to be caring for your child during the examination, which may make it easy to forget the questions that you had intended to ask.

Where can you find a Pediatric Neurologist?


If you have concerns about your child’s development, first speak to your child’s health care provider (a Pediatrician or Family Physician). Ask if a referral to a specialist, such as a Pediatric Neurologist, might be helpful. Your provider may recommend one or you can locate a Pediatric Neurologist by clicking on AAP’s physician locator.

Bottom line
If there is an issue or problem with your child’s development, it is always better to seek answers earlier rather than later. A Pediatric Neurologist may be a very important doctor in your child’s care.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.

Have questions? Send them to AskUs@marchofdimes.com.
Tags: Baby, birth defect, child, child neurologist, children, delays, developmental delay, disabilities, family physician, nerves, pediatric neurologist, pediatrician

Source: NewsMomsNeedat marchofimes.com

Friday, November 1, 2013

Upcoming chats in November

We have pulled together a calendar of Twitter chats @MODHealthTalk for Prematurity Awareness Month. Mark them on your calendar and then come join us.

11/1 - Infant and baby loss, 9 PM ET. #losschat
11/7 - Bed rest with Keep ‘Em Cookin, 1 PM ET. #pregnancychat
11/14 - Going home after the NICU, 1 PM ET. #NICUchat
11/16 - Parenting in the NICU, 4 PM ET. #worldprematurityday (Part of the World Prematurity Network relay)
11/17 - Birth stories. World Prematurity Day, anytime all day. #birthstories.
11/20 - Early intervention: how to get help for your child. 1 PM ET. #preemiechat