Caring for the siblings of a child with special needs

Parenting a child with delays or disabilities has its challenges, and so does parenting his siblings.

My post last week revealed research that indicates that the brothers and sisters of a child with disabilities may have unique issues and stressors. It’s not easy growing up with a sibling that needs so much attention. Parents try to do their best – but often end up feeling like an octopus without enough tentacles. Not to mention the stress of holding the rest of your life together (job, food shopping, errands, housework, cooking, laundry, etc., etc.). Making sure the sibs of your special needs child are doing ok may not be at the top of your to-do list. I get it. Whether your special needs child is a baby, toddler or older, here are some tips so that your “typical kids” don’t fall through the cracks.

One of my favorite websites is NICHCY.org. NICHCY has all sorts of great info on sibling care. Included are topics such as “What Siblings Would Like Parents and Service Providers to Know” and “What About Me? – Support for the Siblings of Disabled Children.” They also offer info on sibling support groups which might be helpful.

NICHCY recommends talking with your typical children about disability – “it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level.”

Here are tips that worked for me and some parents I know:

• Tag teaming - try to find a friend or relative that can take care of your child with a disability so that you can spend some time with your other children. You then do the same for your friend’s children.

• Snippets of time – you may not need to spend 3 hours of 1:1 time with your non-disabled child if you just spent 3 hours with your child with a disability. Often just 20 minutes of uninterrupted 1:1 time is enough for your little one to keep him feeling included. Try to grab snippets of time whenever you can.

But don’t forget about you

In another post in this series, I gave tips on how to care for YOU – the parents. See Caring for the caretaker – put on your oxygen mask. You’ll learn tips on how to keep yourself in check so that you can do the best job in your role as parent, spouse, childcare coordinator, project manager, file keeper, advocate, chauffeur, cook, cleaner, worker, and giver and receiver of hugs and kisses from your little ones!

Remember, you need to take care of YOU to take care of them.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. 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 suggestions for future topics.

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

Tags: Baby, birth defects, Caring, child, delays, disabilities, parenting, siblings, Special needs

 

Teach grandparents about pertussis

The Sounds of Pertussis ® Campaign’s new online resource Grandparents’ Corner is here! Check out this customized resource developed in part by leading Grandparent Expert Dr. Arthur Kornhaber to help grandparents learn more about the important role they play in helping to keep their families happy, healthy and protected from pertussis.

Pertussis leads to coughing and choking that can last for several weeks. Babies who catch pertussis can get very sick, and some may die. Most deaths from pertussis happen in babies less than 4 months old. If your parents or in-laws are helping to care for your children, they need to know how to help protect them from pertussis.

Tags: child health, grandparent, infant health, pertussis, whooping cough

Your body after baby

 

Lots of things are happening to your body right after you give birth, especially for the first 6 weeks! Your body is changing again. Some of these changes are painless; others may be uncomfortable.

During pregnancy, your uterus grows to hold your growing baby. After your baby is born, your uterus shrinks back to its regular size. But, it takes some time for your belly to get back to its regular shape after pregnancy. It took time to gain the weight and it will take time to lose it. But don’t get discouraged! Be active and eat healthy foods to help you lose the baby weight. Start slowly, perhaps with a daily walk, and listen to your body as you gradually become more active. And, be sure to ask your provider if you have any issues that you need to be aware of before you increase your activity or begin to exercise.

If you had swelling while pregnant, it may take a while for it to go away after giving birth. Lie on your left side or put your feet up. Stay cool and wear loose clothes.

Your breasts swell, too, as they fill with milk. This is called engorgement, and it can be painful. Once you start breastfeeding, the swelling should go away. If you’re not breastfeeding, it may last until your breasts stop making milk.

Breastfeeding your baby helps your body, too. It increases the amount of a hormone in your body called oxytocin. This helps your uterus (womb) go back to the size it was before you got pregnant. It also helps stop bleeding that you have after giving birth. And, it burns extra calories. This helps you get back to your pre-pregnancy weight more quickly.

Many women feel unprepared for postpartum health issues. For instance, many experience breastfeeding problems, hair loss, hemorrhoids, mood swings, and anxiety. Not all women have these problems, but they are fairly common. All the physical changes and demands of your new baby can make you really emotional, too. Feeling stressed and tired all the time are common for new moms. Some women have the baby blues for a few days after giving birth. If these sad feelings last longer than 10 days, tell your provider. You may need to be checked for postpartum depression.

Remember, it’s normal to feel some discomfort, like soreness and fatigue, as your body heals after giving birth. However, other discomforts and health problems may be a sign that you need medical care. Know the warning signs and be sure to seek help when you need it.

In time, your body should return to “normal.” Every woman is different – there is no one time clock or standard that you should compare yourself to. If you know what to expect, give yourself time and are patient, you will find that it will happen. In the meantime, enjoy every luscious moment with your little prince or princess!

Tags: Baby, baby blues, baby bump, body, body after baby, breastfeeding, exercise, first 6 weeks, giving birth, losing baby weight, physical activity, postpartum, postpartum blues, postpartum depression, Pregnancy, royal baby

 

The Story of the Boyz

From mom’s perspective…..

I am a planner. As the oldest child of three, I have always liked to plan things out and be organized as much as possible. When my husband and I began talking about having children, planning kicked into overdrive! I bought books, I made doctors’ appointments, I started taking prenatal vitamins and going to the gym. I started tracking the best times to conceive and even planning when our child may be born based on when we might conceive. Yes...I was that kind of planner!

As I quickly learned, this was a part of life that could not be planned. Once we finally were pregnant, we had a wonderful surprise…..we were having twin boys! At the very beginning of our journey, we were told that twin pregnancies were high risk and were told what our plans would be just in case the boys arrived early. We knew what to expect, but were confident in having a healthy pregnancy and hopeful these plans would not have to materialize. My pregnancy went amazingly! Aside from the normal fatigue, weight gain and increased appetite, I had a normal pregnancy. I felt fantastic and didn’t even feel like I was carrying twins.

The number of doctors’ appointments required for a twin pregnancy was astonishing! At some points, I was going to appointments two and three times per week. The positive side of this was getting to see my babies and hear their heartbeats. Toward the end of the pregnancy, I was going to the hospital twice per week to monitor contractions and the heartbeats for the babies. All of these appointment went well and never showed any early signs of labor.

At 33 weeks, I began having contractions in the middle of the night. As it was still early, we figured we should go to the hospital, just in case, even though we were already there earlier that day. When we arrived at the hospital, they determined I was in labor and was progressing very quickly. As the hospital did not have a NICU, they quickly decided to fly me to University of Maryland Medical Center. Upon arrival at UMMC, our boys were delivered by emergency C-Section at 7 am. My labor lasted only 5 hours! “E” was born at 4 pounds 9 ounces and “A” was born at 4 pounds 6 ounces. Both were happy, healthy and breathing on their own! Both boys were perfectly healthy, but were on the small side and had immature breathing. The NICU staff at the hospital was absolutely amazing! They walked us through step by step how to care for our boys while in the NICU and answered any questions we ever had. They provided us with many resources including books and pamphlets on the March of Dimes. As we did not live locally, we spent many days traveling back and forth to the hospital, but always knowing our boys were in great care!

One of the best resources was the information about what preemies often face while in the NICU and some of the language used. When you are first in the NICU, the beeps, bells and whistles are overwhelming and stressful. Hearing “Brady’s” and “Low Pulse Ox” or holding your baby in your arms and they start to beep and turn purple are all very scary things! The resources from March of Dimes and the fantastic staff at the NICU helped us enjoy our time with our babies and stress less while visiting them. After a total for 4 weeks in the NICU, the boys are now home and thriving!

My husband and I have been so appreciative for the resources provided to us during this time with our boys that we wanted to be able to give back in some way. My father has been doing Bikers for Babies for years and suggested we connect with the March of Dimes. Until our experience with our boys, March of Dimes was something I knew about, but was not necessarily personal to me. Now, it hits home and we have a firsthand understanding of the benefits of such a wonderful organization. We are a prime example of the mission of the organization—to help provide support to families and their babies. We look forward to participating in the events such as Bikers for Babies and March for Babies to help raise awareness and provide support to other families. It is nice to know there are other families out there that have similar stories and experiences and that you are not alone in your journey. If there is a way to help other families have a similar positive experience, we are dedicated to help make that happen—and March of Dimes is the way!

-Heather Z, Waldorf MD

 

 

 

Is your preemie ready to fly?

Even after a premature baby has been discharged from the NICU, she may not be ready to go on an airplane just yet. Although today all commercial planes have pressurized cabins, believe it or not, the oxygen concentration in the air is not as high as in a typical room at sea level. For healthy people, that means that we simply need to breathe more deeply or more rapidly to get the same amount of oxygen. We do this without even thinking about it and our bodies easily make the adjustments needed.

But preemies may be different. A lot may depend on what your baby’s oxygen saturation levels were while she was in the NICU. For a baby whose oxygen saturation was measuring close to 100 percent, a plane ride may not be a problem. But for a baby whose oxygen saturation levels were even a little lower–90-95 percent, for example—the drop in oxygen concentration may be a cause for concern.

Flying on an airplane also increases the chances that your baby may catch a cold or other respiratory tract infection. Planes carry many people in an enclosed compartment. And they actually recycle all or part of the air circulating in the cabin. This has led to a greater transmission of infections among all passengers. Of course all babies are vulnerable to these illnesses, but preemies are at an increased risk—especially during their first winter.

If you were thinking about taking your preemie on an airplane, make sure you talk to your baby’s health care provider. Many neonatologists actually advise parents not to take babies on airplanes for several months after leaving the NICU. Your baby’s health care provider knows her breathing and medical history and is the best person to help you make the decision whether traveling by plane is a good idea.

Tags: air travel, preemie, travel

 

 

Southern Maryland

What if the hardest day of your life….was your first?

Join us for the 10th Annual Southern Maryland Bikers for Babies!

Sunday, October 6, 2013

(Rain date:  October 13, 2013)

Start:     Maryland International Raceway                                                 End & After Ride Party:  Apehangers Bar & Grill
27861 Budds Creek Road                                                                                                                 9100 Crain Highway
Mechanicsville, MD 20659                                                                                                               Bel Alton, MD 20611

 11:00 am Gates, Registration & Vendor Alley open, Maryland International Raceway, Budds Creek

12:30 pm Tattoo Contest (must register prior; $10)

  1:00 pm Bike Show Awards (must register before 12:30; $10)

  2:00 pm Ride Starts

Registration includes entry into MIRock.  Come early and enjoy the races, festive atmosphere, music, vendors, tattoo contest, & bike show.  The 45 mile police escorted ride will begin at 2:00 with official line-up and start on the ¼ mile-racing track and will take you on a scenic ride through beautiful Southern Maryland when the fall foliage is at its peak.   The ride will end at Apehangers Bar & Grill in Bel Alton, Maryland for a free after ride party with all the trimmings, including live entertainment by The Craze! 

All clubs and all wheels welcome!  Just leave your attitude at home.

 Don’t ride?  Bike in the shop?

Register anyway and enjoy all the festivities and fundraising benefits. 

Pre-register and receive a free 2013 Bikers for Babies Event Patch

(Registration fee must be paid online prior to event date to qualify.)

 

Once you complete your online registration, please consider setting an additional goal of raising $100, $250, or even $1,000 by emailing your friends, family and co-workers and ask them to support your efforts in the fight to give every baby a healthy start.

 

Every WEEK in Maryland:

*1,419 babies are born

*104 babies are born to teen mothers (age 15-19)

*489 babies are delivered via cesarean section

*181 babies are born preterm

*125 babies are born with low birth weight

*12 babies die before their 1^st birthday

 

Everybody is affected by prematurity in some way – families, businesses, schools, health professionals, and the nation as a whole.  We RIDE to fulfill the March of Dimes Mission – to improve the health of all babies by preventing premature birth, birth defects, and infant mortality.

 

Help us give every baby a healthy, happy “birth” day.

 

Join Bikers for Babies Today!

$30 – Registration Fee per person (riders & passengers)

Registration includes event pin & admission to MIRock & after-party. 

(Do Not have to ride to party!  $20 donation accepted at the door at Apehangers)

 

Raise $100     Event Pin & Doo Rag

Rasie $250     Event Pin & Sweat Shirt

Raise $500     Event Pin & Leather Gloves

Raise $1,000+            Event Pin & Leather Bag & Ride in front

 

Event T-Shirts available for purchase for $15; Women’s Tanks $20

 

Register & pay online at www.bikersforbabies.org and receive a free event patch.

 For more information, jabell@marchofdimes.com, www.bikersforbabies.org, 571-257-2310

 
https://www.facebook.com/events/calendar#!/events/380368385414438/?context=create

PRE-REGISTRATION EVENTS

 August 10, 2013 6:30 p.m. – 10:00 p.m.

Regency Furniture Stadium

Join us for a night at the ball park.  Tickets are only $13 and the March of Dimes gets $6.50 for each ticket sold by following the below instructions.  We will be at the stadium doing pre-registration and raffles.

1. Go to www.somdbluecrabs.com
2. Click on “Fun-Raisers” Tab
3. Click on Bikers for Babies Logo
4. Enter:  MODBIKERS
5. Click “BUY”
6. Select your seats and complete your order

https://www.facebook.com/marchofdimesmdnca/events#!/events/371897012916973/

 September 14, 2013 5:00 p.m. – close

Port Tobacco Marina

 

Join us for dinner, pre-registration, and raffles from 5:00 – 9:00 and then come enjoy the sweet music of Stickey Wicket.  15% of all food sales to March of Dimes.

 

https://www.facebook.com/marchofdimesmdnca/events#!/events/156715047835053/?context=create

 

 

Teething

Your baby’s first tooth is an exciting milestone!

Most babies get their first tooth when they’re around 6 months old. But teething can start as early as 3 months. Teething is when your baby’s teeth come through the gums for the first time. The two front teeth on top or bottom usually come in first. Most children have all 20 of their baby teeth by time they are 3 years old.

Some babies have no trouble with teething. Other babies may feel pain for a short time. And others may be fussy for weeks because of teething pain. Signs and symptoms of teething include:

 

• Being cranky
• Chewing on something hard
• Crying
• Drooling
• Fever with temperature less than 101F
• Stomach ache
• Swollen gums or gums that hurt when they’re touched

Call your baby’s health care provider if your baby seems sick, seems to be in constant pain, or has a temperature higher than 101F. These signs may mean that something else is wrong.

Does she seem miserable? To help your baby feel better:
• Give her something to chew on, like a rubber teething ring, a cold spoon or a cold washcloth. Chewing on these things can help ease pain. Clean these items to avoid infection. Some parents find that a chilled teething ring lessens their baby’s pain. If you chill your baby’s teething ring in the freezer, take it out when it’s cold but before it becomes really hard. A frozen solid teething ring can hurt a baby’s tender gums.
• Rub her gums with a clean finger to help with the pain. But don’t give your baby any pain medicines and don’t rub any medicines or alcohol on her gums. Some medicines can harm your baby if she swallows too much. Other medicines wash out of the mouth before they can help with pain.
• Wash any drool off her face to avoid development of a rash.

Tags: baby tooth, drooling, first tooth, sore gums, teething

 

Gastroschisis, an abdominal wall defect

A new study published this week in Obstetrics and Gynecology reports on the rise in the incidence of a birth defect called gastroschisis, an abdominal wall defect. The study was large, reviewing over 4700 cases of gastroschisis occurring in 15 states from 1995-2005. While the condition is still relatively uncommon, the number of cases nearly doubled in the ten year period (from 2.32 to 4.42 per 10,000 live births). The highest rates (11.45 per 10,000) proved to be in non-Hispanic white teen mothers. Women younger than age 20 were over seven times more likely to have a baby with gastroschisis compared with women aged 25-29. Why? We don’t yet know.

In gastroschisis, the baby has an opening in the abdominal wall, usually on the right side near the belly button. During pregnancy, part or all of the baby’s intestines come out through the opening. Sometimes the baby’s stomach and liver also may be outside the body.

The intestines and other organs float in the amniotic fluid that surrounds the baby in the uterus. The amniotic fluid can irritate the baby’s intestines, sometimes causing them to swell, twist or get shorter. As a result, some babies have lasting intestinal problems. Babies with gastroschisis usually don’t have any other birth defects.

If a baby has a small abdominal wall defect (only part of the intestine is outside the body), he will probably have surgery within 12 to 24 hours of birth. The surgeon will place the intestine back inside the abdomen and close the opening.

If a baby has a larger defect, however, the surgery may take place in stages. In some cases, the baby’s intestines may be swollen or the abdomen may not have grown enough to hold them. The surgeon may place the intestines in a tall plastic container called a “silo.” The silo is positioned over the opening in the abdomen. Over several days or weeks, the surgeon will gradually tighten the silo. This helps to push the intestines and other organs back inside the abdomen. Once all the organs are inside, the surgeon will remove the silo and close the opening.

While life starts for these little ones with what seems an intense ordeal, most babies with gastroschisis recover and develop normally. Some have feeding problems that last at least through early childhood but most eventually outgrow these problems.

More research is needed into the cause of gastroschisis. The March of Dimes has and is funding a number of grants on research involving abdominal wall defects and we will continue to look into the causes so that hopefully one day these defects can be prevented.

Tags: abdominal wall defect, birth defect, gastroschisis, intestine

 

Re-entry: life after vacation

Life after vacation can be rough.

No sooner had you gotten used to your surroundings away from home and begun to relax when you need to gear up for your trip back home. It may take a while to re-adjust and get up to speed with your work and home life.

 

If you have a child with special needs who went on vacation with you, adjusting back to life after vacation can be especially challenging. In my post last week, I talked about how to go on vacation with your special needs child…successfully. But now I want to focus on what I call “re-entry” – coming home and getting back to normal. Often re-entry is much harder that you can imagine.

So many kids struggle with changes to routine. But a child with challenges may have an even deeper struggle with change of any kind. “Sameness” seems to be the name of the game. A child with special needs often reacts negatively to tiny changes in his life. Small things (such as bed sheets, pajamas, breakfast cereal) need to be kept the same or a meltdown will ensue. If you went through the pains of helping your child adjust to going away, and after a period of adjustment your child settled in and had a good time, you may be in for a tough time when you arrive back home as you try to change back to his new “old” routine. For many special needs children, transitions are like going into a black hole –they are scary and cause great anxiety.

How can your help your child adjust to going home?

It is important to prepare your little one for the transition home. A photo of your home, his room and toys should be in his communication book. Point to it and explain to him you will be going home. If you know you are taking a plane or a long car ride to get home, show him the picture of a plane or car so that he knows what will be happening next. But, be careful not to tell him too early, as children don’t have a clear sense of time and would expect that shortly after you point to the pictures in his book, he will then be back home.

Once you arrive home, positive reinforcement can work wonders. Rewarding all the things he is doing “right” can go a long way in keeping the peace. If you have a sticker chart or reward system in place, keep it going throughout the transition home. Remember, re-entry is really hard for your child. He is not trying to annoy you or be difficult. It’s just the way he’s wired…so try to be patient.
As you slide back into your routine, make a book of your vacation memories. You can print out the photos of your trip and make a book so that your little one can “read” it from time to time and remember that he was there. This will help for the next time you wish to travel to a place as he will remember that he had fun on a previous trip. The more you go away (even on short day trips), the more memory books you can create. These books will be a testament that your little one is making progress. It will help him become confident in his ability to accept change and maybe even learn to like it.

Should you go away again?

It is hard to break routine and inject new people, places, foods, smells, beds and countless other new senses into the life of your special needs child. But, the more times your child is successful at transitioning through change, the more successful he is going to become at it. That is not to say it is easy, but over time it usually becomes less hard. As your child becomes more verbal, he can express to you what will help him be successful. Sometimes simple things such as allowing an extra few minutes to leave the house so that he can say “good bye” to each of his stuffed animals before he leaves may allow you to get out of the house without a meltdown. It is different for every child. Learn what works for your child and try to be patient.

Hopefully, in time, your get-aways will become a welcome change…as they should be.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Click on “Help for your child” and scroll down to view all of the blog posts to date. As always, we welcome your comments and input.

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

Tags: Baby, change, child, children, delays, disabilities, preemie, Special needs, transitions, vacation