Family Team News

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Monday, December 30, 2013

Can sleep affect your child with special needs…or you?

Quick answer….YES. Sleep is more than, well, sleep. It is restorative and essential to a healthy life. It is as important as water, food and air. For a child with special needs, it can make the difference between an “okay day” and a horrible one.

What does sleep do for you or your child?
A newly published study in Pediatrics revealed that “Children with nonregular bedtimes had more behavioral difficulties…Having regular bedtimes during early childhood is an important influence on children’s behavior.”

Nonregular bedtimes can disrupt a child’s behavior because it interferes with a body’s circadian rhythms (sleep cycle). It may also result in sleep deprivation, which may then negatively affect the part of the brain responsible for regulating behaviors. But, when children with nonregular bedtimes changed to regular bedtimes, parents reported positive changes in their behaviors. (Yay!)

Sleep also helps you…
• stay healthy (you get sick less frequently)
• grow (if you are a baby, child or teen)
• get to and maintain a healthy weight
• lower your risk of high blood pressure and diabetes
• boost your mood
• think clearly, be more focused, and sharp
All of these benefits will allow your child to feel happier, do better at school, avoid injuries and be at his best – and that includes being better behaved. For adults, the benefits are the same, making you more efficient at work, more energetic, less likely to make mistakes, and able to maintain a positive outlook. It also helps you to maintain patience - something needed when you are dealing with babies, children or teenagers, with or without special needs.

How much sleep do you really need?
• newborns need 16 -18 hours of sleep each day
• preschoolers need 11-12 hours per day
• school-aged kids need at least 10 hours
• teens need at least 9 hours of sleep each night
• adults need about 7-8 hours of sleep each night (some people need more, some less).
Note the words “at least,” as there are many kids who need much more sleep in order to function properly, depending on their lifestyle and medical condition.

What happens if you don’t get enough sleep?
Children and teens need sleep to help their bodies grow. Cells regenerate at night during sleep. By not getting enough sleep, the hormone balance in a child will be thrown off. Without adequate sleep, a child’s immune system will have a harder time fighting off germs and diseases.
If you don’t get enough sleep, your “sleep debt” will increase to a point when you will need to make up for the lost sleep. If you do not get the sleep you need, your body does not operate as it should. Your judgment and reaction times will be negatively affected. This can be dangerous for adults, especially if you are caring for an infant or child, or you are driving a car. Lack of sleep and driving is risky – it is as dangerous a combination as drinking alcohol and driving.

Where can you get more info?

For information on how to get a restful night’s sleep, sleep tips for children and adults, and when to see a doctor regarding possible sleep problems, see this handy guide.

Bottom line
Sleep is not a luxury. It is a necessity. By keeping a regular bedtime, your child’s health and behaviors may improve. Think of sleep as one of those essential nutrients (like a vitamin). Then, you may be able to make sleep one of the priorities in your life.

If you and your little one get the sleep you need, you will see and feel a positive difference.
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.
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Source: NewsMomsNeedat marchofimes.com

Thursday, December 26, 2013

Smoking - a risk for preterm birth


We’ve all read the articles, seen the ads, maybe even known someone who has had lung cancer. But many pregnant women still smoke. Did you know that smoking nearly doubles a woman’s risk of having a premature baby? We need everyone’s efforts to help women quit.

Not only is smoking harmful to Mom, it’s also harmful to your baby during pregnancy. When you smoke during pregnancy, your baby is exposed to dangerous chemicals like nicotine, carbon monoxide and tar. These chemicals can lessen the amount of oxygen that your baby gets and oxygen is very important for helping your baby grow healthy. Smoking can also damage your baby’s lungs.

Babies born to women who smoke during pregnancy are more likely to be born prematurely, with birth defects such as cleft lip or palate, and at low birthweight. Babies born prematurely and at low birthweight are at risk of other serious health problems, including lifelong disabilities (such as cerebral palsy, intellectual disabilities and learning problems), and in some cases, death.

Secondhand and thirdhand smoke are proven to be bad for babies’ health. All the more reason for both Moms and Dads to try to quit. With counseling and social support, smoking cessation programs have yielded a significant reduction in preterm birth.

Know someone who is trying to quit? Lend ‘em a hand. Want help quitting? Try http://smokefree.gov/.

Monday, December 23, 2013

When your baby is overdue

The average healthy pregnancy is around 40 weeks. Some babies come earlier and others run later. A pregnancy that lasts longer than 42 weeks is called a post-term pregnancy.

Dr. Siobhan Dolan discusses overdue pregnancies in the book Healthy Mom Healthy Baby. Here is an excerpt from the book.

“Although many post-term babies are healthy, some risks do start to increase after 41 to 42 weeks. An overdue pregnancy takes a toll on the placenta, amniotic fluid, and umbilical cord. As the baby grows larger, the chances of stillbirth and delivery injuries go up, and there is a greater likelihood that the baby will experience meconium aspiration (inhaling stool from the amniotic fluid into the lungs) or a condition called dysmaturity syndrome (in which the baby is no longer getting enough nourishment because the placenta is aging and becoming calcified).

“When a baby is overdue, the provider may do some tests to check on the baby’s health. They include:
-
Ultrasound exam
- Kick count, which is a count of how many times your baby moves or kicks you during a certain period of time
-
Nonstress test, in which a fetal monitor measures your baby’s heart rate for a certain amount of time
- Biophysical profile, which uses a fetal monitor and an ultrasound to score a baby on each of five factors (nonstress test, body movements, breathing movements, muscle tone, and the amount of amniotic fluid)
- Contraction stress test, which compares your baby’s heart rate at rest with the heart rate during contractions induced by a shot of oxytocin or nipple stimulation

“If these tests suggest that your baby is in good condition, you can continue to wait for labor to begin naturally. If they raise concerns, your provider may wish to induce labor or perform a c-section. Providers rarely allow a pregnancy to go beyond 42 weeks.”

Wednesday, December 18, 2013

How do you explain a micro preemie to a 5 year old…


As we approach the holidays, we drag out old ornaments and art projects that the kids completed and reminisce about those times. This always brings a little bit of a struggle for Noelle. She LOVES to put up the tree, help wrap presents and get everything ready. She knows that Santa comes, but she also knows the reason for the season and how important it is to celebrate “Jesus’ birthday!”
However, she had a lot of questions this year about her birthday. Wanting to know why her baby pictures were so “scary” and told me that they make her sad. I’ve heard of other preemie parents keeping the baby pictures away from the child until they are old enough to handle it. However, that’s Noelle’s history, that’s her past. Quite frankly, she still has oxygen and a feeding tube and I always thought her baby pictures were so cute. I was so used to seeing the tubes, lights, wires, IV poles….I didn’t even think about how she might portray these pictures in her curious mind. She has had baby pictures hanging on her wall since she came home…and I don’t intend to take them down. I decided it was time to explain….

Way easier said than done. She had tons of questions. She wanted to know why she didn’t have baby pictures without oxygen and she wanted to know where Andons baby pictures WITH oxygen were. I explained that babies are suppose to grow and cook in a mommys tummy for a long period of time. Andon stayed in for the full cooking time. However, Noelle was just so excited to see us that she came a bit too early. I told her that this was the coolest thing because mommy, daddy and Andon were able to watch her grow on the outside of my tummy instead of inside. I told her we were able to hold her, play with her, sing to her much sooner than most other babies. Her smile and amazement told me I was doing an okay job. I asked her if she wanted to see more and she said yes!

I have boxes of every little paper, every form signed, each and every blood pressure cuff as they got
bigger, the bilirubin “sunglasses”, pictures upon pictures, every diaper size she went through (clean of course), each binky size, sweeties containers, outfits, hats, blankets, anything homemade by volunteers or nurses, surgery pager papers, “Drama Queen” pillows still in the same plastic bags, I even kept her first g-tube! I pulled all this stuff out and showed it to her. Patiently waiting to see if I had made the right choice to share at age 5. I did! She was amazed and astonished at everything. She wanted to look through every little thing and asked for explanations.
The outfits were a hit, the diapers were a hit, everything she looked at was filled with big eyes and “awww’s!” Almost as if something had clicked. She understood. She asked a few more questions…. For instance, why do her lungs need oxygen? My answer of her lungs being so small when she was born finally clicked. I hope a lot of things clicked. I explained the scary pictures. Even though, it looked like she was tiny with a lot of tubes….look at mom’s face!

That picture was the day I got to hold you for the first time.
Oh, look! That was your first bath!

That was the day you got to try out peanut (she knows peanut as her bipap machine…it just looks a little different on a tiny baby).
Look, this was the day we got to say goodbye to your warming bed (isolette) and you got to be in a big girl crib!

Look! This was your first Thanksgiving, Christmas and New Year! All in the hospital surrounded by people who love you.
We have pictures with each nurse, doctor and therapist. So, she wanted to know who they were….name by name…picture by picture. So we did. It’s been five years and I still know every name and face. I still know the smells, I still can hear the machines beeping … I’m glad she won’t know that part. Then, I was able to match faces and names to things she knew. For instance, Nurse Megan and Nurse Tonya made a lot of Noelle’s signs. Nurse Emily made her night night CD that she STILL listens to every night. It went on and on….

She just knew that each person holding her was smiling and happy to be with her. I explained that she spent so much time with these doctors and nurses…that they loved her like family.
It was a bittersweet evening with Noelle and I. We went through so much together and I felt like I finally got to share it with her. She needs to know how special she is, how loved she is, and how much people generally enjoy being around her and with her. She needs to understand what a true miracle she is!

As we approach Christmas next week, I’m reminded of all those babies, doctors, nurses, therapist and staff who will be at the hospital on Christmas. All the parents that will visit their sweet babies in the hospital on Christmas Day. Say an extra prayer for those. It’s hard to visit your child in the hospital on Christmas. However, the people that are there make it so special. I’ll never forget that. Say a prayer for the people working in the hospital on Christmas. They are leaving their families to take care of others. I hope they know how appreciated and thankful the parents are…even if they seem sad. It’s been 5 years….and I’m not sure if I’ve ever said thank you to those people. So… THANK YOU! Thank you not only for making Christmas special for those in a cruddy situation….but thanks for making such wonderful memories that I was able to share with my gal 5 years later. I’m so thankful that her baby pictures are no longer scary. The reason being because I was able to express the memories behind those pictures.
Merry Christmas from the Mikels!

Xoxo,
Stacie
Posted on December 16, 2013 by snrmikels

Monday, December 16, 2013

Fragile X syndrome

Fragile X syndrome is the most common inherited form of intellectual disability. It affects about 1 in 4,000 males and 1 in 6,000 to 8,000 females and occurs in all racial and ethnic groups.

Fragile X syndrome is caused by an abnormality in the FMR-1 gene located on the X chromosome. Each person has 23 pairs of chromosomes, or 46 individual chromosomes. The pair of sex chromosomes (X and Y) determines whether a person is male or female. Females have two X chromosomes, and males have one X chromosome and one Y chromosome. Because females have two X chromosomes, a female who inherits one X chromosome with the abnormal FMR-1 gene still has the other unaffected X chromosome. Therefore, girls are affected by fragile X syndrome less frequently than boys and their symptoms are usually not as severe. Boys are usually more severely affected because they have only one X chromosome, and it contains the abnormal gene.

Fragile X is inherited and passed on through the mother’s side of the family. Any woman who has a brother or male relative with fragile X syndrome may want to meet with a genetic counselor. A genetic counselor can help her to better understand the complicated genetics and inheritance of fragile X syndrome.

Children and adults with fragile X syndrome may exhibit a number of signs. These can range from mild to severe. Some common symptoms include:
• Some degree of intellectual disability or learning problems
• Behavioral problems, such as difficulty paying attention and frequent tantrums
• Autistic-like behaviors, such as hand flapping and hand biting
• Delays in learning how to sit, walk and talk
• Speech problems
• Anxiety and mood problems
• Sensitivity to light, sounds, touch and textures

Most boys with fragile X syndrome have intellectual disabilities, but only about one-third to one-half of affected girls do. However, affected girls with normal intelligence may have some of the following symptoms:
• Learning disabilities involving math
• Attention difficulties
• Speech delays
• Emotional problems, such as anxiety, depression and shyness
• Poor social skills

While most children with fragile X do not have any medical conditions, about 15% of boys and 5% of girls develop seizures. These can usually be controlled with medication. Children with fragile X may also be at increased risk for multiple ear infections and they may need to have tubes placed in their ears. Older children and adults may have heart murmurs, but usually no treatment is necessary.

There is no cure for fragile X syndrome. But, an individualized treatment plan, beginning as soon as possible, can help children reach their full potential. Most children with fragile X syndrome can benefit from treatment by a team of health professionals and special educators. The team may include speech/language therapists, physical and occupational therapists, special educators, psychologists and pediatricians.


Monday, December 9, 2013

What is a full-term pregnancy?

The American College of Obstetricians and Gynecologists and the Society for Maternal Fetal Medicine has issued a new opinion that defines the length of a full-term pregnancy. This includes the following definitions:

• Early Term: Between 37 weeks 0 days and 38 weeks 6 days
• Full Term: Between 39 weeks 0 days and 40 weeks 6 days
• Late Term: Between 41 weeks 0 days and 41 weeks 6 days
• Postterm: Between 42 weeks 0 days and beyond

We welcome this opinion. The following statement was issued today by March of Dimes Senior Vice President and Chief Medical Officer Dr. Edward R.B. McCabe:

“The American College of Obstetricians and Gynecologists’ and the Society for Maternal Fetal Medicine’s definition of a full-term pregnancy as 39 and 40 completed weeks of gestation is a welcome guideline that eliminates confusion about how long an uncomplicated, healthy pregnancy should last. This new definition acknowledges that the risk of adverse health consequences for babies changes at each stage of pregnancy. Babies born at 39 to 40 completed weeks of pregnancy have the best chance of a healthy start in life. The March of Dimes calls on all health care professionals and hospitals to embrace and apply the definition of full-term pregnancy and move as quickly as possible to implement it in practices and policies.”

Wednesday, December 4, 2013

PREEMIE Act signed into law

 

On Nov. 27th, President Barack Obama signed into law S. 252, the PREEMIE Reauthorization Act, a bill to reauthorize federal research, education and intervention activities related to preterm birth and infant mortality.

“The PREEMIE Act represents the federal government’s commitment to reducing the devastating toll of preterm birth,” stated Dr. Jennifer L. Howse, President of the March of Dimes. “By signing this bill into law, President Obama has enabled vital research and education on the prevention of prematurity to continue. The March of Dimes is deeply grateful to him, as well as the authors of the PREEMIE Act – Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO) and Representatives Anna Eshoo (D-CA) and Leonard Lance (R-NJ) – for their tireless efforts to ensure that no baby is born too soon.

“Today, one in every nine U.S. infants is born preterm. Due to concerted efforts by the March of Dimes and our partners, this number has gone down for the past six consecutive years, but it is still too high. Prematurity can lead to a host of adverse health consequences for these babies and place a terrible strain on their families. In addition, preterm birth carries a significant cost to businesses and our economy. The average premature birth costs 12 times as much as a healthy birth. The PREEMIE Reauthorization Act will sustain the vital federal investment in promoting healthy pregnancies, healthy infants, and healthy families.”

Preterm delivery can happen to any pregnant woman; in many cases, the cause of preterm birth is unknown. Preterm birth is the leading cause of neonatal death, and those babies who survive are more likely to suffer from intellectual and physical disabilities. In addition to its human, emotional, and financial impact on families, preterm birth places a tremendous economic burden on the nation. A 2006 report by the Institute of Medicine found the cost associated with preterm birth in the United States was $26.2 billion annually, or $51,600 per infant born preterm. Employers, private insurers and individuals bear approximately half of the costs of health care for these infants, and another 40 percent is paid by Medicaid.

S. 252 was endorsed and strongly supported by a wide range of organizations, including the American Academy of Pediatrics, the American Congress of Obstetricians and Gynecologists, the Association of Women’s Health, Obstetric and Neonatal Nurses, the Association of Maternal and Child Health Programs, the Association of State and Territorial Health Officials, and the National Association of City and County Health Officers, and more.

The original PREEMIE Act (P.L. 109-450) brought the first-ever national focus to prematurity prevention. The Surgeon General’s Conference on the Prevention of Preterm Birth required by the Act generated a public-private agenda to spur innovative research at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) and support evidence-based interventions to prevent preterm birth. The PREEMIE Reauthorization Act reauthorizes critical federal research, education and intervention activities related to preterm birth and infant mortality.
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Source: NewsMomsNeedat marchofimes.com

Monday, December 2, 2013

Save the Date!

March for Babies online fundraising is up and running.  Log in today to register your Family Team for March for Babies 2014!  Below is the save the date.  If you have any questions please contact Heather Kane or your March for Babies walk site coordinator listed below.
 

Walk                                       Location                                                 Date                       Walk site Coordinator

Allegany County                   Canal Place                                            5/3/14                   Jessica Wagoner

Prince George’s County      Watkins Regional Park                        4/26/14                 Jennifer Abell &William Callahan

Harford County                   Intersection of Rt. 23 and Rt. 24       4/27/14                 Heather Lynch

Wicomico County                Salisbury Moose Family Center         4/27/14                 Wendy Jarrett

Montgomery County          Washingtonian Center                         4/27/14                 William Callahan

Caroline County                   Preston Auto Complex                        5/4/14                   Megan Harbold

Southern Maryland             Regency Furniture Stadium                5/4/14                   Jennifer Abell

Prince William County        Loy E. Harris Pavilion                           4/27/14                 Rachael Hendrickson

Washington D.C.                   Nationals Park                                       5/3/14                   Nicole Dolan

Worcester County               Assateaque State Park                        5/3/14                   Megan Harbold

Greater Baltimore                Camden Yards                                       5/3/14*                 Jennifer Tarr

Fairfax County                      Reston Town Center                            5/4/14                  Marissa Nihill

Washington County             Fairgrounds Park                                  4/26/14                 Jessica Wagoner

Fredrick County                   Fredrick High School                           4/27/14                 Nancy Wiley

 *date subject to change

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