Archive for the ‘Help for your child’ Category

Understanding preemie cues

Wednesday, November 19th, 2014

preemie handFor parents, seeing your little one in the hospital, hooked up to tubes and machines can be scary and overwhelming. We want the best for our children, and it can be unbearable to wonder if your baby is in pain or uncomfortable. Worrying comes naturally, especially when your baby can’t talk and tell you how she is doing. But did you know that babies have certain expressions and behaviors or “cues” that can tell you a lot about how she is feeling? By observing your preemie, she will give you signals that tell you if she is happy, sleepy, in pain, or ready to interact with you.

Learn your baby’s behaviors

Here are a few cues that may help you understand your baby better:

• Happy and content – A calm baby will have relaxed arms, legs and face, stable breathing, an even skin color, and may look around.

• Stressed – Her fingers may splay out wide, she will frown or grimace. Her breathing may increase and her skin become blotchy or pale. She may arch her back or neck, cry and even suddenly become limp or fall asleep.

• Self-soothing – Your baby will try to soothe herself by sucking on her fingers, grasping something (like your finger or a blanket), put her hands on her face or clasp her hands together.

Your preemie’s cues will tell you what she needs. For example, if your baby is stressed, she may be getting too much stimulation. The stimulation can come from too much sound, light or even the combination of being touched AND spoken to at the same time. According to authors Linden, Paroli and Doron in Preemies – the Essential Guide for Parents of Premature Babies, 2nd Edition, “a premature baby is less able to shut out stimuli and to calm herself down after being disturbed.”

What can you do?

Ask the NICU nurse how to comfort your baby. For example, if your baby arches her back, hold back or change your touch. See whether she calms when you cup her head and feet with your hands.

If your baby turns toward you, offer her eye contact or a gentle voice — or both. If she turns away when you talk but toward you when you sing, she’s showing a preference for that kind of voice. Keep in mind that some preemies can only process one stimulus at a time. She may like and respond to touch but not touch in combination with your voice.

Your premature baby’s cues will change as she gets older. As you get to know your baby, you will be amazed at how well you interpret her movements and expressions, and understand how she is feeling or what she wants.

By knowing infant cues, you can learn how to connect with your baby, and respond to her needs. Hopefully, knowing how your baby is feeling will help you to relax and not worry so much.

Source: Preemies- The Essential Guide for Parents of Premature Babies, 2nd Edition, by Linden, Paroli and Doron, 2010.

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view the Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Staying positive in the NICU

Wednesday, November 12th, 2014

parents in the NICUHaving a baby in the NICU is stressful. Very stressful. When a baby is born prematurely, the roller coaster ride of the NICU experience is emotionally, physically and mentally taxing for parents.

Premature birth is the birth of a baby before 37 weeks of pregnancy. One in 9 babies is born prematurely, or 15 million babies globally! Of these babies, one million will die. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems. Just knowing these statistics provokes anxiety and worry in parents. If you are a parent with a baby in the NICU, observing the ups and downs of your baby’s progress day to day can be heart wrenching and particularly wearing.

Depression more common in the NICU

Studies have shown that “in the month after delivery, parents of preemies are significantly more depressed and anxious than parents of term babies,” according to Linden, Paroli and Doron MD in the book Preemies – The Essential Guide for Parents of Premature Babies, 2nd Edition. The authors report that “Besides depression and anxiety, they (parents) were more apt to feel hostile, guilty, and incompetent at parenting and to isolate themselves socially…An early delivery is itself so scary that even many parents of healthy preemies react with shock and anxiety.” Given the stress associated with seeing your baby in the hospital, and the ups and downs of slow progress – it is not hard to imagine that depression is seen more often in parents of preemies than in parents of children born at term.

Many new mothers experience the “postpartum blues” or the “baby blues.” Baby blues are feelings of sadness you may have three to five days after having a baby. These feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. By about 10 days after the baby’s birth, the baby blues should go away. If they don’t, tell your health care provider who will determine if you may have postpartum depression (PPD), which lasts longer and is more serious than baby blues.

Signs of PPD include feeling tired all the time, having no interest in your usual activities, gaining or losing weight, changing your eating habits, having trouble sleeping or concentrating, and thinking about suicide or death. If you have five or more of these signs and they last for two weeks or longer, you may have PPD. Sometimes mothers of preemies develop postpartum depression as a result of the severe stress and anxiety experienced by having a premature baby. Even fathers of preemies can become depressed.

What can help?

There are many ways to feel better.  Treatments for depression may include all or some of the following: healthy eating, regular sleep and exercise, talking with friends, family or a professional counselor/therapist, lowering your stress by taking time to relax and avoiding alcohol. In addition, your health care provider may give you medication specifically designed to help with depression.

Talking to other parents who have gone through the NICU journey can be very helpful. The parents on the March of Dimes’ online community, Share Your Story, “talk” to one another and share their experiences. It is a comforting and supportive community, where all NICU families are welcomed.

When will you feel better?

The length of time a parent feels down, anxious or depressed can vary, and may depend on the health of your baby, and the length of NICU stay. But usually, parents of preemies begin to feel more balanced as their baby grows, and “by the end of the baby’s first year, their psychological distress, on average, has been found to be similar to those of mothers of term babies” according to the Preemies book. But, each baby and NICU stay is unique, so each parent’s journey to feeling better is unique.

Bottom line

Having a baby in the NICU is extraordinarily stressful and difficult. You need to take care of yourself in order to be able to take care of your baby. It is important to be aware of the signs or symptoms of depression and to speak with your health care provider if you have any concerns at all.

The sooner you seek help, the sooner you will feel better.

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view the Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Resilience. When struggles can be a good thing.

Wednesday, November 5th, 2014

woman looking at crystal ballWouldn’t you love to have a crystal ball that could show you what your child will be like when he is an adult? Would his disability define him? Would he overcome it to succeed and realize his dreams?

Last week I met several graduates of the school my daughter attended when she was a young girl. This school is specifically for children with diagnosed learning disabilities. Graduates returned to talk to parents of current students about life after school – their struggles and their triumphs. The audience was inspired by their resilience and impressed by what they overcame to be successful. Throughout the years, I have attended many programs like this one, and met countless other graduates. The positive messages that resonated from all of the graduates were that they learned valuable lessons from struggling with learning disabilities. Those lessons served them well, as they learned how to be resilient.

Resilience.

According to Merriam-Webster Dictionary, resilience is “an ability to recover from or adjust easily to misfortune or change; the ability to become strong, healthy, or successful again after something bad happens.” The ability to keep trying to succeed despite repeated failures exemplifies resilience. Getting back up after being knocked down – getting back on that horse – is resilience. The adults at this program told stories of struggles during childhood that brought tears to my eyes, but now their courage, confidence and sense of self was plainly evident. One panelist said he would not trade in his learning disability for anything. It taught him important lessons in his life; it made him stronger.

Resilience.

All the panelists mentioned that they initially did not know how to learn, study, or organize themselves due to their learning disabilities. They gradually acquired strategies and went on to be successful in high school, college and many even went to graduate schools. For example, there was a doctor, real estate developer and investment banker on the panel. They recounted their battles learning to read, write, count, add or divide. Yet when they went to high school and college, they had such good study habits and academic discipline that they did not struggle in ways that their peers did. One panelist recounted how her medical school classmate would “fall apart” when he got a “C” on an exam, while she knew enough to know that that one exam did not define her future; she would just pick up and keep on going.

Resilience.

This was the theme over and over again. Kids with learning disabilities work harder than those without disabilities to reach the same level of achievement. They learn early on that they may fail but if they keep on trying, they will also succeed. Often they need to be creative and use another road to get to their destination. They learn how to shift gears, ask for help, and advocate for themselves. This stick-to-it-ness helps them in all of their challenges or struggles later in life.

Resilience.

If your little one is struggling with disabilities now, know that there are many “success stories” out there. There are countless individuals who have learned to overcome their challenges and figure out a way to reach their potential. Your child may not go through the front door – but the side or back doors may still get him where he wants to be.

And, picking up a little resilience along the way will be the unexpected icing on the cake to help with the future hiccups of life.

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

The special language of special needs

Wednesday, October 29th, 2014

kayak without a paddleIf you have a child with special needs, you have no doubt heard tons of words, initials or acronyms that you did not understand. You may have had to stop and ask for clarification or a definition. Or, even worse, you did not ask and were lost as the conversation zoomed on and you kept trying to make sense of it all.

The world of special needs, including delays, disabilities, early intervention and special education, has its own language. The sooner you familiarize yourself with the many acronyms, the easier it will be to navigate your child’s world and be an effective advocate. Without this info, it is like being in a boat (or a kayak) without a paddle.

Just to drive my point home, here is an analogy. Would you ever take an upper level language class without first taking the introductory course? Would you take Algebra II without first taking basic math? Would you take your driver’s test without looking at the manual first? You’d be lost (or at least I would be), and nothing would make sense to you. This is why you need to get the basics down, especially before you go into meetings that pertain to your baby or child’s intervention services.

Help is here

Here is my blog post with tons of acronyms to use as a cheat sheet. It is appropriately called Learning the Lingo.

Next, you can find many more on the CPIR website, where the NICHCY materials have migrated. Their Alphabet Soup has an exhaustive list of words with their meanings.

Lastly, Words and terms – a whole new world breaks out the terms pertaining to early intervention and then for special education.

So check them out, click on the highlighted terms to learn more, and print out the acronym sheet for your reference. You’ll be glad to have this info in one tidy place. Then, when the conversations turn to IFSPs or LREs, you will know exactly what everyone is talking about. Soon, you’ll be paddling upstream with confidence!

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Halloween ideas for kids with food allergies or sensory challenges

Wednesday, October 22nd, 2014

pumpkinWhen you hear the word “Halloween” do you think of candy? Chocolate? Fun costumes? For children with food allergies or sensory issues, Halloween can be a frustrating evening. The thrill of getting treats can quickly become a letdown if there is nothing that your child can eat. And, the thought of wearing a costume may be the last thing your sensory special child will want to do.

Non-foods gain in popularity

Years ago, in my neighborhood, we knew of a child on our street who had food allergies. As a result, some moms decided to have an assortment of other acceptable treats to give out, so that the child with food allergies could enjoy Halloween, too.

We offered the kids non-chocolate choices, such as bags of pretzels, crackers and pops. But, surprisingly, the most popular alternatives were non-food items. Crayons, tiny notepads, little cars, plastic jewelry, glow stick necklaces, stickers, and other inexpensive but fun playthings soon became an equally desired treat for many children. I was surprised to see kids who did not have food allergies choosing stickers instead of a chocolate treat. Their eyes lit up when they saw my bucket filled with non-candy gifts. The best part is that you can get most of these items at dollar stores or discount centers, so offering alternatives won’t be a costly venture. Just be careful that you do not get tiny toys, as they can be a choking hazard to small children.

My colleague here at the March of Dimes said that the “best” house for trick or treating in her neighborhood was the one where they gave out quarters instead of candy. She and her friends loved it, as they could buy whatever treat they wanted. (But again, be careful you don’t give coins to young children as they are liable to put them in their mouths.)

When you stop to think, it makes perfect sense to widen the net of Halloween treats. Food allergies are becoming more common, so offering non-food treats is a perfect way to keep Halloween safe and yet be tons of fun. Why not think about offering non-candy treats this year and start a whole new tradition? But watch out – you may well end up being the most popular house on the block for trick or treaters!

Can’t wear a costume?

Little Red Riding HoodIf your child has sensory issues and can’t fathom the idea of putting on a costume, don’t fret. Just yesterday, a little 2 year old in my neighborhood toddled by my front steps as I was sitting there enjoying the sunshine. Her mom told me that she is sad because her daughter refuses to even try on a costume. I suggested she create a “costume” out of her regular clothes. For instance, if she has a red dress or a red hoodie, she can carry a little basket and be Little Red Riding Hood. (True confessions – I did this for my daughter when she was about that age!) Here are more ideas on how to prepare your child with sensory challenges for Halloween.  Also, you can ask your child’s Occupational Therapist for specific ideas that can make him comfortable.

Just remember, the most important thing is that your child is comfortable and safe, and has fun on Halloween.

What tricks have you tried to help your little one have fun on Halloween? Please share.

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also see a Table of Contents of prior posts, here.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Honoring parents with angel babies

Wednesday, October 15th, 2014

yellow butterflyThe loss of a baby is heart wrenching.  As today is Pregnancy and Infant Loss Awareness Day, I want to take a moment to honor those parents who have angel babies. Most people cannot even imagine being in their shoes for an instant, yet alone having to live a day-to-day existence without the baby they continue to love.

The loss of a baby touches so many people in profound and long lasting ways. No two individuals grieve in exactly the same manner. The mother may grieve differently from the father. Children who were expecting their sibling to come home from the hospital experience their own grief as well. Even grandparents and close friends may be deeply affected. The ripple effects from the loss of a baby are widely felt.

The March of Dimes is committed to preventing premature birth, birth defects and infant mortality. It is our hope that through continued research, we will have a positive impact on the lives of all babies so that fewer families will ever know the pain of losing a child.

If you or someone you know has lost a baby, we hope that our online community, Share Your Story will be a place of comfort and support to you. There, you will find other parents who have walked in your shoes and can relate to you in ways that other people cannot. Log on to “talk” with other parents who will understand your grief. We also have bereavement materials available free of charge. Simply send a request to AskUs@marchofdimes.org and we will mail them out to you.

Please know that the March of Dimes is thinking of you today and every day.

Flu is dangerous for certain people

Wednesday, October 8th, 2014

You’ve all heard it: get your flu shot. It is on our blog, website, and we just finished a twitter chat with the CDC, FDA, AAP, doctors, and other notable tired-toddlerorganizations. Everyone agrees that getting the flu shot is the single best form of protection from flu.

Is it really that important?

Yes. Flu can be life-threatening. Certain groups of people are at higher risk of serious complications from flu:

• Children younger than 5 years of age and especially kids younger than 2 years old.

• Children of any age with long-term health conditions including developmental disabilities. See this post to learn which high risk conditions are included.

• Children of any age with neurologic conditions. Some children with neurologic conditions may have trouble with muscle function, lung function or difficulty coughing, swallowing, or clearing fluids from their airways. These problems can make flu symptoms worse. Learn more here.

• Pregnant women. They are at high risk of having serious health complications from flu which include miscarriage, preterm labor, premature birth or having a low-birthweight baby. In some cases, flu during pregnancy can even be deadly. By getting a flu shot during pregnancy, your baby will be protected up until six months of age.

•  Adults older than age 65 (attention grandparents!).

When should you talk to your provider?

According to the CDC, you should seek advice from your provider before getting a flu shot if you are allergic to eggs, have had Guillain-Barré Syndrome (GBS), have had a prior severe reaction to the flu shot or to an ingredient in the shot, or are not feeling well.

Bottom line- get your flu shot

Read my post Test your flu knowledge – true or false? to learn the truth about flu.  Knowledge is powerful.

If you have questions, speak with your health care provider or visit flu.gov .
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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

BRACE yourself – The ShareUnion message

Wednesday, October 1st, 2014

BRACE yourself poseBRACE yourself for your new normal. This is the acronym that keynote speaker Kevin Bracy imparted to dozens of women at the 10th annual ShareUnion in Phoenix, Arizona. ShareUnion (SU) is the annual gathering of members of Share Your Story, the online community of the March of Dimes, where parents reach out and support one another. This year’s theme was “Finding your new normal.”

The well-known motivational speaker inspired the women who face daily struggles associated with prematurity, infant loss, or raising a child with a developmental delay or disability. The speaker himself is no stranger to loss or the long term effects of prematurity. He and his wife, Jessica, have a 13 year old son who was born at 28 weeks gestation and suffers from significant challenges. Nine years ago, the Bracys lost a son who was born at just 22 weeks gestation. They also have a 21 year old daughter who is healthy. The Bracys embody the mission of the March of Dimes. Jessica has been a Share Your Story member for years, and sent her positive vibes to the group via her husband.

Bracy’s messages are universal, but they are best embraced by anyone who is faced with a constant struggle. His first message, BRACE yourself, (while crossing your arms over your chest with your hands in fists) is meant to help lift you up when you are feeling overwhelmed.

BRACE yourself stands for:

B – Be good to yourself – Be kind to yourself.
R – Regroup and refocus when you need to, especially when your life seems to be getting out of control.
A – Attitude – Always be attitude conscience. Let the “inner you be expressed by the outer you.”
C – Cause centered – Focus on the important people and things in your life.
E – Embrace change. Don’t fight it. Adapting will make your life better.

Accept, adapt and embrace your new normal. Don’t “go through” your challenges, “grow through them” Bracy says. For many SU moms, this advice resonated as they face the daily struggles of caring for a child with special needs as well as themselves and their families.

Mouth over mind – Bracy’s 2nd message

“When the mind goes negative, the mouth goes positive” Bracy explained. He recounted that the great fighter Muhammad Ali would talk out loud to himself before a fight. Ali would say he was the best and he was going to win. He spoke out loud to himself because he believed that his mind could talk his body into greatness. Bracy recommended that when your mind starts thinking of negative scenarios, quickly talk out loud, positively, and it will change the direction of your thoughts. Your mind can’t be negative if you are talking positively. By speaking out loud, you switch off your negative thoughts. Bracy then proved his point through a group exercise. Powerful stuff.

For families affected by prematurity, infant loss, disabilities or birth defects, Bracy’s messages were uplifting and inspiring. “Win the day, one day at a time” he concluded. Judging by the standing ovation he received, everyone became a winner that day.

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Good-bye NICHCY. Hello CPIR.

Wednesday, September 24th, 2014

waving goodbye or helloLike most people, I am resistant to change. Once I get used to something, I am irked when it is re-arranged or changed, or worse, eliminated. But, today I am writing about a change that made me unhappy at first, but in the end, I feel good about.

In many of my blog posts, I have directed parents to NICHCY (the National Dissemination Center for Children with Disabilities), where hundreds of helpful articles on early intervention, special education, disabilities and the law can be found in an easy to read format. The bad news is that in less than one week, NICHCY’s website will be closed. The good news is that most of the information has been moved to CPIR – the Center for Parent Information and Resources. Thankfully, the valuable information that NICHCY has created over the years will still be accessible on the CPIR site.

I recommend that you go directly to the CPIR page, Quick Find/NICHCY Resources, which links you directly to a roadmap of NICHCY’s topics. You can also access information through their alphabetical listing.

NICHCY’s specialty was helping parents access and navigate the early intervention and special education systems. They have important information on creating an IFSP and IEP. They also offer information on the IDEA (Individuals with Disabilities Education Act) which is the law ensuring that children with delays or disabilities receive a free, appropriate education. You will also find fact sheets on specific disabilities as well as materials in Spanish.

So, as sad as I am to see NICHCY go, I am thrilled that this information is not lost, and it will continue to be kept current by the good folks at CPIR. This is the kind of change that I can bear quite easily.

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. While on News Moms Need,  select “Help for your child” on the menu on the right side to view all of the blog posts to date.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Heavy backpacks hurt- how to lighten the load

Wednesday, September 17th, 2014

backpacks-150x150Pain and strain. Did you know heavy backpacks can be the cause of posture and back problems? Many children with special needs have musculoskeletal issues. A very heavy backpack may add additional challenges to an already sensitive child.

Yesterday, on my way to work, I noticed a group of kids headed for the bus stop. I could not help but observe their gigantic backpacks, full to the brim, and noticeably heavy. One little girl was struggling to stay upright as she shifted the weight of her backpack from left to right, in an effort to hurry along and catch her bus.

The daily carrying of heavy packs can cause muscle strain and pain, and may lead to back, shoulder or neck injuries. The American Occupational Therapy Association (AOTA) has designated today as National School Backpack Awareness Day. They are holding events in different areas of the country. Even if you don’t make it to a backpack event, it is well worth your time to read AOTA’s tip sheet on Backpack Strategies for Parents and Students.

AOTA offers strategies on how to lighten the load, pack the backpack properly and wear it correctly. For instance, did you know that the pack should not weigh more than 10% of your child’s weight? (If your child weighs 80 pounds, the loaded pack should not weigh more than 8 pounds.) Also, you can make hoisting a pack easier by packing the heaviest items close to your child’s back. Using both shoulder straps is also key to minimizing injuries. Learn more helpful tips on their sheet.

So, help your child “pack it light and wear it right.” You could well avoid injuries and pain with a few simple changes.

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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!