Posts Tagged ‘coping’

Recognizing families who care for preemies

Wednesday, November 9th, 2016

Preemie on oxygen_smIn addition to November being Prematurity Awareness Month, it’s National Family Caregivers Month. These two themes go together well. Caring for a premature baby can take a huge toll on parents and families. The focus is on the baby (naturally) which can be a round-the-clock roller coaster ride. But, who cares for the parents and other children?

Recently I attended a meeting for parents of special needs children. The common theme that day was coping. Parent after parent talked about the impact that one child can have on an entire family. When medical issues are present, as they are with a preemie, it is understood that everything else stops while you care for and make serious decisions related to your baby. If you have other children, they take a temporary back seat to your sick baby. Everyone pitches in to do what they must do to survive the crisis of a NICU stay.

Once the baby is home, the crisis may seem like it is over, but often it is only the start of a new journey – one with visits to more specialists than you knew existed, appointments for speech, physical,  occupational and/or respiratory therapy, a schedule of home exercises, and navigating the early intervention system. Thankfully, these interventions exist to help your baby, but it is clear that this new schedule can resemble a second full-time job.

If a parent is alone in this process (without a partner), it can be all the more daunting. Without a second set of eyes to read insurance forms, or a second set of hands to change a diaper when you are desperate for a shower, it can feel overwhelming.

What can you do?

This month is a good time to remember to reach out and ask for help. Friends often want to take a bit of the burden off of you, but simply don’t know how they can be helpful. Be specific with them. If you need grocery shopping done, send out a group text to your buddies and ask if anyone could swing by the grocery store to pick up a few items for you.

Try to set aside a couple of hours each week, on a regular basis, when you know you will have a respite. It could mean that your spouse takes care of the baby while you go take a walk or join a friend for coffee. Or, your parent or grandparent could take over for a bit so you and your spouse could watch a movie together. It doesn’t have to be a lot of time – but just knowing it is scheduled gives you something tangible to look forward to, which helps to keep you going and lift your spirits.

In other blog posts, I share ways parents can take the stress off. See this post for a list of survival tips, and this post for how to care for the brothers and sisters of your special needs child. They need special TLC!

Be sure to check out the Caregivers Action Network’s helpful tips for families as well as their useful caregiver toolkit.

If you are like me and have trouble relaxing, see “Stop. Rest. Relax…Repeat.” It may just inspire you to break the go-go-go-all-the-time pace and find ways to relax. Believe me – once you grab those precious moments to refuel, you will be glad you did. Your body and mind will thank you, and so will your family.

Do you have tips for coping? Please share.

View other posts in our Delays and Disabilities series, and send your questions to AskUs@marchofdimes.org.

 

 

How to cope when your baby is in the NICU

Monday, June 6th, 2016

parents in the NICUToday we are fortunate to have Dr. Amy Hair, neonatologist and director of the Neonatology Nutrition Program at Texas Children’s Hospital, answer our questions on how parents can cope if their baby is in the NICU. Thank you Dr. Hair!

What is the first thing families should know when their baby is admitted to the NICU?

Parents should know that they are a vital part of the care team for their baby and the doctors, nurses and staff value their opinions and instincts.

Parents often find their first visit to the NICU overwhelming, but in time, they’ll become accustomed to the physical environment and start to tune out all of the machines, beeping and noises and just focus on spending time with their precious baby.

Depending on the baby’s illness and how premature they were born, parents will see machines, wires, hear beeping and other potentially alarming noises. We try to introduce parents to their baby’s environment and explain what each piece of equipment is used for, what the numbers are on the monitor (vital signs) and the wires they see are routine leads to pick up the heart beat tracing (EKG leads). At first glance, the NICU may appear frightening and may concern some parents but most babies in the NICU, regardless of how severe their illness is, receive the same type of cardiopulmonary monitoring (vital signs monitoring).

The most common types of equipment parents will see in the NICU are cardiopulmonary monitoring wires, incubators and respiratory support systems.

There are so many people in the NICU. How do I know who to talk to if I have a question?

The entire NICU team is there to help support and take care of babies and families in any way possible. Parents should feel free to reach out to any NICU staff with questions and concerns. If they do not know the answer immediately, they will work to find the answer as quickly as possible.

How can parents cope when their baby is in the NICU, especially if they have jobs, other children or travel a distance to the hospital?

In addition to the stress and fear they feel while their child is in the NICU, parents are going through many changes. Mothers are experiencing body changes, hormonal changes and role changes and fathers are adapting to their new role as a dad as well. If you become overwhelmed, ask for help. Remember that it’s okay to take care of yourself so that you can better take care of your baby.

Access your community resources or local support systems whether this is family and friends, a faith community or neighbors to help you with things such as babysitting your other children, cooking meals, running errands, etc. This will allow you more time for NICU visits without the overwhelming feeling that you are neglecting other aspects of your life.

Any other words of wisdom to offer parents?

We know parents can’t be here 24/7. Call the NICU any time you like. Although you may feel like you are pestering the team, this is never the case. We know that your baby is your number 1 priority regardless of your physical location and we are always happy to answer your questions regarding his or her status and well-being.
Amy-Hair-MD-PFW

 

As a Neonatologist, Dr. Hair specializes in care for infants born at the edge of viability as well as infants born at term or earlier with congenital defects or other conditions that need specialized intensive care. Her research focus is neonatal nutrition, specifically evaluating how our smallest premature babies grow during their hospital stay.

 

 

Getting guilt-free time off

Wednesday, February 17th, 2016

nine o'clockFew parents can afford the kind of support or home care that would truly provide the respite you need to recharge your batteries. Therefore, you need to be creative in trying to build in snippets of time off.

Parenting a preemie, a child with a birth defect, developmental delay or disability is all-consuming. The physical and emotional toll it takes on a parent can be so heavy that you may wonder how you will go on if you don’t get a break.

Here is what used to work for me:

I decided that every Wednesday was my day off. On that day, I would not make a bed, empty the dishwasher, do laundry (unless absolutely necessary), book doctor or therapy appointments, or otherwise do anything that I usually did on the other six days of the week. Returning non-emergency, non-important emails or phone calls could wait until the next day. After all, I was “off duty” – the usual daily chores could wait. I did not feel guilty that beds were unkempt, because after all, I was off duty. I did not care that if someone rang my doorbell, the house was not tidy because (you guessed it) I was off duty. Dinner was simple – leftovers or take out, on paper plates please! It was my day off so I didn’t have to cook or do dishes. All I had to do that day was take care of my children and myself, which was enough. Wednesday was the day I gave myself a free pass.

It may sound silly or overly simple, but it worked for me. I looked forward to that day in the middle of the week when I didn’t have to do all the things that I usually did on the other days of the week. It was a little way for me to give myself a reprieve without feeling guilty. After all, with most jobs, you get time off to recharge your batteries and become refreshed. Parents raising kids with special healthcare needs must have “time off,” too, even if they can’t physically get away.

Here is another approach I used when my kids got a bit older. I would tell them that at 9 pm I “turn into a pumpkin” (a la Cinderella). That meant they had to have homework done, backpacks packed, and questions asked because I was about to go into my room to unwind (usually by watching a TV show). I can still hear them telling each other “We better show mom this (whatever it was) fast because it is almost pumpkin time!” It was a way for me to know that my day had an end (sort of), and a way for them to respect that Mom needed time to relax. It was amazing how quickly everyone got used to the routine. I even got a night shirt with the words “OFF DUTY” on the front! (A little extra emphasis can be a good thing…haha!) The bottom line is that this method worked well for my family, and especially for me.

Let’s face it, your kids need you, and they need you to be fully functional. If you can’t get someone to help give you a break, maybe my little day-off scenario and “pumpkin” deadline will work for you.

If you have a method of how you get re-charged, please share.

 

Note: The mini-series on Delays and Disabilities has lots of info to help you if you have a child with special needs. Please feel free to comment and make suggestions. If you have questions, send them to AskUs@marchofdimes.org.

 

Having a baby in the NICU can be stressful for siblings

Wednesday, June 24th, 2015

IMG_9387Giving birth early and having a baby in the NICU is stressful for parents; but what is sometimes overlooked is how upsetting it is for the preemie’s siblings.

A change in routine is upsetting to children. Having mom and dad away from home for long periods of time can turn even the most well-adjusted child upside down. If your child has not been able to visit her sibling or she does not have a solid grasp on what is happening, the uncertainty of the situation can cause distress. What can you do to ease the anxiety that is trickling down to the smallest members of your family?

  • Talk to your child at a level that she can understand. There are children’s books that explain prematurity. These books can make the explanation much easier for parents. Check with your local library for appropriate titles.
  • Reassure your child that nothing she did or said caused her sibling to be born early. Some kids may blame themselves or feel guilty.
  • Your child might be very worried and fear that the baby may never come home. As best you can, let your child know that you and the doctors and nurses are taking good care of her baby sibling, just as they would take care of her.
  • Understand the signs of distress in your child. Any regression (loss) in developmental progress (such as bed wetting, not sleeping through the night, acting out or being excessively attached to you), may indicate that your child is feeling the negative effects of the situation.
  • If possible, have your child visit your baby in the NICU.
  • In the Preemies book, you can read about these and other ways to minimize the anxiety that having a baby in the hospital can have on your family.

Do you have any tips to share on how to help your older children got through the stress of having a baby sibling in the NICU? Please share.

Have questions? Send them to AskUs@marchofdimes.org

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

Talking to your child about his medical condition

Wednesday, June 17th, 2015

child in wheelchairParents have written to us asking when they should tell their child that he has a disability, birth defect or chronic medical condition. Not only do they want to know when to tell their child; they want to know HOW to do it.

According to the experts, there is no straight, cookie-cutter answer. Every child is different. Every medical condition is different. Kids mature at varying rates, so one five year old may be capable of understanding details of his condition while another one will not be able to grasp the concepts. According to the AAP, “The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.”

Seeking advice from your child’s pediatric health care provider is always a good place to start, along with other specialists such as a therapist, psychologist, neurologist or developmental pediatrician. The AAP has practical information on how to talk to your child, along with tips on how to help him deal with the daily stress of a childhood disorder.

Just as you probably felt like a steam roller moved over you when you learned of your child’s condition, your child may also feel disappointed, sad or even angry. On the other hand, your child may feel a sense of relief to realize that the condition has a name, he is not the only child who has it, and mom and dad will be there to support him through the ups and downs. Other children may not have much of a reaction, as they already knew what was going on – or felt different – so they are not especially moved by the new information.

Depending on your child’s age, his ability to understand, and what he hears from peers and siblings, he may know more about his condition than you think. And, each year, as he grows and matures, his ability to understand will increase. AAP recommends that “Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly.”

Children’s books on the topic of his disability can help your child understand what is happening in his world. Likewise, meeting other children who share his condition may help to put it in perspective and brighten his outlook. He may even make a new friend or two.

Remember to focus on what your child CAN do, as opposed to his struggles. This attitude is key in keeping him focused on the positive. Help him find his passion  and celebrate his resilience.

If you have questions, send them to AskUs@machofdimes.org.

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

 

Preemies and asthma – how to help your child

Wednesday, May 20th, 2015

asthma inhalerResearch has shown that premature birth (before 37 weeks) can cause a baby to have lung and breathing problems such as asthma, a health condition that affects the airways.

Asthma causes repeated episodes of wheezing, breathlessness, chest tightness, and nighttime or early morning coughing. It can be mild to severe. If your child has asthma, he is far from alone. According to the CDC, 6.8 million children have asthma, or 1 in 11 children.

Asthma can be controlled by taking medicine and avoiding the triggers that can cause a flare-up. It is important to remove the triggers in your child’s environment that can make asthma worse.

What causes asthma symptoms?

Many children with asthma have allergies. Coming into contact with an allergen can set off asthma symptoms. Common allergens are: dust mites, animal dander, mold and pollen.

Other triggers include air pollution, smoke, exercise and infections in the airways. Asthma symptoms may be brought on by a change in air temperature, perfumes and odors from cleaning products.

How can you help your child?

Understand your child’s asthma condition as much as possible. Learn how to minimize triggers and know what to do in the event of an asthma flare-up. The American Academy of Pediatrics (AAP) offers ways to avoid asthma triggers or irritants.

What are common treatments?

Depending on how mild or severe your child’s asthma condition is, treatments will vary. Often quick relief medicines (such as inhalers) will be prescribed to help stop an asthma flare-up. These medicines help to open the airways making breathing easier.

Long term treatments include medications that aim to keep the lungs from becoming inflamed. These medications help prevent flare-ups, and need to be taken even when there are no asthma symptoms.

What about childcare and school?

The AAP has helpful info on the various treatments available and offers management tips for different situations such as at home or school.

The CDC has recommendations on how you can make your child’s childcare or school environment as successful and asthma free as possible. In the United States, there are laws to help your child at school. For example, a 504 plan might be needed to help your child access his education through reasonable accommodations.

What should you ask your child’s health care provider?

Ask for an individualized asthma action plan. This is a written plan to help your child avoid his particular triggers and respond to asthma symptoms. The plan aims to give you more control of your child’s condition, and hopefully, to avoid emergency situations. The plan can be used anywhere – at home, day care or school.

How can your child understand his asthma?

There are books, videos and podcasts available that you can explore with your child to help him learn about his condition (if he is old enough to understand):
How to use your asthma inhaler video shows kids using an inhaler properly.
Dusty the asthma goldfish and his asthma triggers is a downloadable fun book that helps kids and parents understand triggers.
• The CDC’s Kiddtastics podcast is another way for parents and kids to learn about managing symptoms.
• Here are other resources specifically geared towards kids. Check them out.

Bottom line

No two children are alike, and each asthma case is unique. As with any health condition, be sure to speak with your child’s health care provider about all of your concerns. With knowledge, medical advice and an action plan, your child can live a very full and active life.

Have questions? Send them to AskUs@marchofdimes.org

Read more about how to help your child with a delay, disability or health condition.

 

Stop. Rest. Relax…Repeat.

Wednesday, April 22nd, 2015

things to do I am not one who can easily relax. Usually, I need a brick wall in front of me to make me stop (or a cliff will do fine, too). Adrenaline runs through my veins. I am continually creating and updating my to-do lists (or as I call them, my must-do lists) and the I-don’t-have-time-to-relax attitude often overtakes me.

Now, I KNOW, that I need to relax, for the sake of good health and a clear mind. I KNOW I need sleep, a healthy diet and exercise. But, when the list of all that needs to be done is before my eyes, or in my hand, or on my phone, I have a very hard time turning away from it and shutting down my mind. Does this happen to anyone else out there?

As parents, we have the responsibility of providing for our children – financially, physically, emotionally and in every other way that they need. Parents of children with special needs face additional tasks to conquer, from appointments with specialists, to IEP meetings, to figuring out a system with continual twists, turns and dead ends. For pregnant women, stress related hormones may play a role in causing certain pregnancy complications. Unless we purposefully have a method or a way to shut off the engine and refuel it, we risk burn-out and ill health.

But, easier said than done.

A few years ago, I took up yoga, as I knew that it offered health benefits. Among the benefits is a curious thing called “mindfulness.” Now, I am a science geek at heart, so the touchy-feely aspect was not really something I gravitated toward. But, I gave it a try anyway. What is this thing called “mindfulness?”

Well, it is a way to help shut out the noise of everything around you (and even your own busy mind), and just…be. At first I was not able to just sit and “be.” Be what? I am a do-er. Not a be-er. But, I kept going to yoga class thinking that there must be something to this, and to just give it time.

relaxing at workEventually, (after about a year!) I got comfortable and even good at sitting down on my mat, crossing my legs, uttering OOOOOOOMMMMMMM a few times, and becoming “present in the moment.” My yoga instructor would say “you have nowhere to be, nothing to do, but to be here, present.” I would concentrate on my breathing (never did that before!), and work on blocking everything out of my mind (much harder than it sounds).

During class, I give myself permission to put the world on hold for an hour. My must-do list will be there when I am done, and my noisy world will return, but for this one hour I honor myself, I rest my mind, I invigorate my body, and I …..relax. What a concept!

When my son was in first grade, he received a writing assignment; the topic was “my favorite thing to do.” He wrote “My favorite thing to do….is to relax. I like to go home, lie on the couch, put my feet up and just watch a movie.” (His teacher was not too happy, as she expected to hear he liked to play a sport or build a Lego creation, but I found it enlightening.) His favorite thing, was letting go, relaxing….just “be”ing. Hmmmm. Kids GET this.

April is Stress Awareness Month, so, as you rush around, going from appointment to appointment, crossing off items on your must-do list, remember that you can only go so far without re-fueling. The stop-rest-relax portion of your day is as important as the go-go-go part. It does not have to be through yoga, but find something that helps you relax your body AND mind. Then, when you pick up and go again, you will be refreshed and able to handle whatever comes your way. Believe me, if I can do it, you can, too.

So, try this as your new mantra for today:  stop – rest – relax.

And tomorrow?

Repeat.

 

For more posts on how to help your child with a delay or disability, view our Table of Contents.

 

Do you know your baby’s different cries?

Wednesday, April 15th, 2015

infant cryingYes…babies cry a lot; but, they cry for a reason. Your baby may be hungry, have a dirty diaper or he may not feel well. He may need to burp, have gas in his tummy, or simply need to be cuddled (which is a really good reason to cry). Crying is the only way your baby can tell you that he needs something. It is his language before he can speak.

Soon you will learn to recognize the differences in your baby’s cries. His cries will not all sound the same. The “I’m tired and need to go to sleep” cry will sound different from the “Ouch – my diaper rash hurts” cry. Likewise, the cries due to hunger will sound somewhat different from the cry when a stranger holds your baby. The more you pay attention to the slight variations in cries, the more you will learn to anticipate and react to your baby’s needs.

Do preemies cry more often than full term babies?

Some studies show that premature babies are more likely to be fussy than babies who are born full term. They may be harder to soothe, cry often, and have trouble eating and sleeping. If your baby is fussy, it may be comforting to know that you are not alone. Some babies who have been in the NICU have trouble getting used to the quiet of home. Your baby may sleep better with some background music or a low level of noise in your home.

Remember to never shake your baby when he cries—this can seriously hurt him. If you can’t soothe your baby or you think he cries way too much, talk to his health care provider. Babies can get sick very quickly and the sooner you seek medical attention, the quicker your baby will get better.

What if your baby cries constantly?

Your baby’s doctor can also tell you if he thinks your baby may have colic, which is intense crying lasting more than 3 hours a day. About 1 in 5 babies develop colic – usually between 1 and 4 months of age. They cry constantly, often extending or pulling up their legs or passing gas. Sometimes their tummies are enlarged with air and gas.

There’s no one cause of colic, but there are many different ways to ease your baby’s discomfort. One way is to walk him in a soft-sided baby carrier that you strap to the front of your body. You can also try laying him tummy-down across your knees and gently rubbing his back. The pressure against his tummy may relieve his discomfort.

Breastfeeding moms can ask their baby’s health care providers about a change in food choices or eliminating specific foods that may cause your baby discomfort. Keep in mind that colic usually disappears by 4 months of age, no matter what treatments you try.

Remember Mom

As important as it is to care for your baby, it is also important to care for yourself. Moms of babies who have colic or are very fussy are often sleep deprived. Enlist the help of your partner, relatives and friends, so that you can take time out to sleep, eat well and even go for a stress busting walk. The time you spend nourishing your body and mind will help give you the patience to deal with your crying baby.

For tips on how to soothe your crying baby, visit us.

For more posts on how to help your child with a delay or disability, view our Table of Contents.

 

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.

Sibling visits to the NICU can be helpful

Wednesday, February 4th, 2015

Sibling visits baby in NICUPrematurity affects everyone, including siblings. When older children have a sister or brother in the NICU (neonatal intensive care unit) they sense their parents’ concern and worry, and their lives are thrown off balance. Siblings of a preemies go through their own NICU journey of sorts – from experiencing anxiety, worry and frustration to happiness and joy. However, there are some steps you can take to help your older children through the ups and downs of the NICU experience.

If your baby is in the NICU, it may be possible for your other children to visit. Ask the head nurse of the NICU if the hospital allows this and if your preemie is strong enough for the visit. Often, seeing their baby brother or sister in the NICU helps older children understand what is happening and to realize why mom and dad are not home as much. Even a short visit can help put the situation into perspective. Visiting can also make siblings feel like they are a part of the journey and that they are helping out.

But, NICUs can seem scary to children, and seeing a tiny baby hooked up to monitors and tubes can be terrifying. Here are ideas (some from the Preemies book) to help make the visit successful. In all cases, get the permission of the NICU staff first:

• Have your older children send in a toy or drawing ahead of the visit, and display it prominently near your preemie’s bed. When your children arrive, they will see their presence and will feel an immediate connection.

• Describe your baby’s condition to your children before the visit. Perhaps show them a doll that is about the size of your preemie, so they are not too surprised when they see their tiny sibling.

• If it is possible, allow your children to touch the baby. Touch helps to establish a bond. Of course, the NICU nurse will tell you if this will be allowed or not, depending on your baby’s current medical condition.

• Ask if your children can talk, read a book, or sing a song to the baby (softly). It will give them the feeling of doing something positive to help.

• Ask if your hospital has a NICU Family Support Program. The March of Dimes partners with many hospitals in the United States. Such programs comfort and support families, including siblings. Some hospitals also have a corner where siblings can play as they wait while their parents visit. They may even meet other siblings in this play space, and be able to share their feelings with other kids who understand what they are experiencing.

There is no doubt about it – having a baby in the NICU is a difficult journey for the whole family. Hopefully, short visits will help your other children to understand, feel included and “help out”, which will in turn, lessen the mystery of having a little brother or sister in the NICU.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes online community for NICU families. Also, see this blog post for helpful info on a father’s role in the NICU.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. View the Table of Contents of all posts in the series. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

Updated June 2017.