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Babies with special needs

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By Stormy Brain



Everyone who is expecting a baby has the dream of delivering a perfectly healthy and normal baby. Yet for millions of families around the world that dream becomes slightly different with the arrival of their baby. Everyday babies arrive with problems ranging from mild to serious. Whether the problem is a physical handicap, a developmental disability or a chronic illness, few new parents are prepared to deal with the immediate practical decisions that are needed. In addition they are often not prepared for the equally immediate emotional upheaval that goes with the news that their baby is not what they expected. These special needs babies can have any one or several physical problems that happen with or without cognitive problems as well. The range of problems is to far reaching to be covered comprehensively in an article such as this. This article is to serve as only a brief overview babies with special needs and some coping techniques for their parents.

The emotional response
If you are the new parent of a special needs baby, it is important to understand that it is normal to feel the full range of emotions for a very long time. Often there are both strong and contradictory feelings. The grief over the loss of the baby you did not have may vie with feelings of protection and tenderness for the baby that is here. It is also normal to wonder: Why me? Why us? Parents may feel overwhelmed by all the decisions that they are suddenly going to have to make. It is very normal to want the world to stop for awhile so that you can get your breath and figure out just how you are going to manage. It is also normal to be angry and sad. New parents may feel like they are on an emotional roller coaster. It is important to understand that you are not sick, you are not inadequate, you are quite normally overwhelmed. It is equally important that you do not let other people decide what you should feel or how you should deal. Keep in mind that some people work through shock, disappointment, and pain by sharing and talking and looking for validation from others. Others will turn only to their partner or a few trusted family members or friends. Still other people need time alone or with their god. Some people dealing with trauma will move among all of these modes. Whatever you need at this time is o.k.-keep in mind that this is a highly personal time.

You must resist the tendency to turn grief into blame. Parents can easily become obsessed with trying to figure out what they did or did not do during pregnancy that might have caused the problem. Some people even go as far as to have searched back through the generations to find the "bad genes." Unfortunately couples have spent years accusing each other of not having done the right thing during the birth. It is important to keep in mind that parents are rarely to blame for the birth of a special needs baby.


Breastfeeding and special needs babies

Learning to breastfeed can be difficult for any new mother. But the difficulty can increase substantially if your baby is born prematurely, or with a congenital condition such as Down syndrome or a cleft lip or palate and then breastfeeding becomes even more challenging and important. Despite the extra challenge it is important to understand that breastfeeding can be a calming respite from the emotional ups and downs of raising a special-needs baby, and your child will reap the nutritional and immunological benefits of breast milk.

There are many reasons that babies with special needs can benefit from breastfeeding. For example, a baby with a cleft lip or palate, is often more prone to developing upper respiratory problems such as colds, allergies, and ear infections. Many studies have shown that these babies do much better when they get their mother's milk. Breast milk can also help babies with heart problems or cystic fibrosis gain needed weight. In addition it can help prevent the respiratory infections and bowel problems that are common with Down syndrome.

There are challenges you will face when trying to breastfeed a special needs baby. For example, a baby with a cleft lip or palate may have difficulty latching on to the areola. Your baby's sucking ability will depend on the size of the cleft, as well as on the size of your breast and the compressibility of your nipple. A Down syndrome baby may have muscles that are either poorly developed or too stiff and either condition can make it difficult to position the baby at your breast. She can also have problems in her mouth, such as a too-large tongue or a flat palate, which can affect the depth of latch and make your breasts sore.

Yet just because your baby has been diagnosed with one of these conditions does not necessarily mean you will not be able to nurse. Ask for help and support at the hospital while you and baby are trying to adjust. For further help and support there are many groups within the community that can offer advice and help for continuing on with breastfeeding should further concerns arise.

Keep your priorities straight
It is critical to realize that your baby needs you. There may be relatives who are offended that you do not spend time talking with them or explaining things to them. There may even be people you made promises to that you now can not keep. There could be projects that will just have to be left undone. But the bottom line is that people who love you will understand. Let go of everything else because your energy needs to be focused on figuring out how to be a parent to your very special child. In addition if there are other children in your family, you will need to figure out how to balance everyone's needs for love, attention, and care.

Be sure to do everything you can to stay connected with your partner. Parenting a special needs child can put enormous strain on even the best of marriages. Exhaustion, worry, financial strain, and the challenges of just getting through every day can make it hard to remember to take time for yourself as a couple. Your top consideration must be to love each other, comfort each other and just be with each other.

Do not hesitate to ask for help.
You were not prepared for this, few people are. There are counselors who will specialize in working with families with special needs children. They know how to help work through the sorrow, shoulder the challenges, push away the tendency for self-blame, and find meaning in a life you did not plan.

When preparation can help
One of the most important things you can do when preparing for your special needs child is to do research. It will be crucial to know everything you can about your child's special needs. You will want to take the time to research the cause of the special needs, treatments and available therapies. Keep in mind that you will want to be the advocate for you child and you will not be able to do that if you are not knowledgeable about your child's special needs.

Community resources for your special needs baby
You can also access your community resources for help in dealing with your special needs baby. There may be parent groups, classes, play groups or other things that are available to help support you and your child as you navigate the world of their special needs. Take advantage of all that is offered to help ease the way as you figure what your special needs child requires.

Home and family
Keep in mind that you may also need to make adjustments within your home. You may have to arrange furniture or even remodel in order to make your home more manageable. Your schedule will have to allow time for doctor's visits or therapy. The best you can do is to prepare for any changes that you know will need to be done and then try to be flexible that more changes may need to happen later. Preparing siblings for a special needs baby can be a challenge. It is a fact though that children usually have a better attitude about special-needs babies than do many adults. Children generally see a baby as just a baby regardless of whether he is missing a foot, has unusual facial features or has a medical problem that requires constant attention. It can be heartwarming to see how caring siblings can be. Keep in mind though that despite their outward ease many siblings will have similar concerns about the new baby as the adults in their life. You can help your other children adjust to the new baby by doing the following things:


  • Try to model a positive attitude. Your children will be very excited about their new sibling, so it's important for you to maintain peace and a positive outlook about the newest member of the family. Any feelings of upset and disappointment you felt when you received the news about your baby's birth defect are certainly normal but if your other children constantly hear you upset over what will happen once the baby arrives, it will overshadow the job of having a new baby to help care and play with. Conversely if your other children see that Mom and Dad are handling this news reasonably well they will take it in stride.
  • Be open and honest with your children. Be sure to tell your kids about special needs of your new baby in terms that are appropriate to their level of understanding. Try not to overwhelm them with too many details at once. This can be a teachable moment in which you focus on what your baby will have rather than dwelling on what he may not. Talking honest with your children will help prepare them for the inevitable changes that will occur within your family.
  • Explain what special needs will mean. It is important to help your other children (and others around you) understand that your new baby is going to require more time, attention, and care from everyone in the family, especially Mom and Dad. But while you are educating your children be sure to listen to their feelings, value them, and help them feel comfortable expressing their concerns.
  • Prepare but don't scared! Many parents anticipating the birth of a special needs baby have found it helpful to take their other children to a few prenatal appointments let them see ultrasound pictures of the baby. Just be sure while looking at the pictures, that you emphasize all the things that are right with the baby, in addition to the birth defect, if it is easy to see on the ultrasound.
  • Involve your other children in the baby's care. Once the baby comes home, the more special care the older siblings can give, the more they can feel involved. This can help your other children understand the importance of family and help instill feelings of empathy for all the members of the family.

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westernangel profile image

westernangel  says:
7 months ago

Very good hub. Thanks for sharing, it is well written and offers some very good advice. As foster parents, we often have special needs babies and toddlers in our care. I have written a few hubs that might be of interest to you as well. If you ever get a chance check them out. By the way, I'm joining your fan club. Keep up the good work.

OTmommy profile image

OTmommy  says:
3 months ago

Well written hub! I am an occupational therapist who works with special needs infants and toddlers through an early intervention program. Early intervention (EI), also known as early childhood intervention (ECI) programs are available all throughout the USA and its territories, and they are a part of the IDEA (Individuals with Disabilities Education Act). Therapy, nutrition, developmental, psychology, teachers of the hearing or visually impaired, and other services are mandated into these programs. All children below the age of 3 years with a delay in development or a medical diagnosis qualify for these services. A free part of the service includes case management/ service coordination, which helps the families access services in the community and provide resources including funding, parent support groups, and other programs that can help the child and family. Also, the EI programs are mandated to help the families transition the child into another program after the age of three years such as an early headstart, private preschool, or a special education pre-K classroom at the local public school. Parenting a child with special needs is not easy, and it is nice to know that the US government has a program that can help families.

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