The first thing on every new parent’s mind, as they stare at the black and white image of their little one on the ultrasound screen, is whether or not the baby is healthy.
From the moment our precious little ones are conceived, we hold in our hearts the image of a perfect little person with mommy’s hair and daddy’s smile. In our dreams and visions our babies are born healthy and robust.
For one in every twenty eight families, this isn’t the case. At some point during the pregnancy they hear the words every parent never wants to hear, “ Something’s not right with the baby.”
No one can prepare you for the emotional impact of finding out that your baby will be born disabled or chronically ill. These are the things that they never prepare you for in parenting classes.
For some parents, the news that their baby has special needs comes as a complete surprise. In an instant, their lives are forever changed.
The emotional and practical aspects of finding out your newborn has special needs are overwhelming at times. In the end, parents of babies with special needs learn to dig down deep for strength and courage that they never knew they had, and learn to love more selflessly than many of us ever have the opportunity to experience.
7 Prenatal Diagnosis
When risk factors are present for a child to be born with a disability or a genetic complication, your healthcare provider may give you the option of discussing the risks with a genetic specialist or an obstetrician. He or she can recommend appropriate testing and possible ways to reduce the risks.
Standard tests during pregnancy sometimes reveal risks due to an infection or other issue that is present.
Because some of these risks can be controlled, your healthcare provider will offer testing to determine whether or not the baby is affected. You will also be informed about the possible risks involved in the recommended tests, and are able to choose whether or not the tests are administered.
Having the testing done can reduce anxiety, if you find out that baby is unaffected. Testing can also give you time to prepare yourselves for the birth of a child with special needs.
Before and after testing is performed, you should be offered counseling. Before testing, it is important that you be advised of any risks that may come with the administration of a test. You should be told what each test is for, and not feel pressured to take tests if that is your personal choice.
After testing, you should be counseled about the significance of the testing results. You will also be directed to any agencies or support groups that can offer you support as you prepare for a child with special needs.
6 Diagnosis After Baby is Born
Often a diagnosis comes during baby’s initial exam after he or she is born or shortly after. Suddenly a moment that is full of joy becomes overtaken by worry and fear.
You and baby’s father will need support as you learn the implications baby’s diagnosis. Often additional testing is needed for your healthcare provider to determine what is wrong with baby.
Your healthcare provider may want to consult with a specialist who is more experienced in dealing with baby’s condition. You may also be offered support from a social worker or chaplain.
After assessing baby’s condition, you will meet with the necessary health care professionals to discuss a plan of action for accommodating baby’s condition. Working with a team of professionals is a much better option than working with random individual specialists. The goal is continuity of care as your baby may be dealing with more than one issue.
5 Stages of Grief
Almost from the minute parents know that they are expecting, they begin to dream and plan for their new arrival. Those dreams can be dashed in an instant with the diagnosis of baby’s disability, chronic illness, or genetic complication.
The loss of the healthy child that you envisioned during your pregnancy can cause you to experience emotional stress. Parents of special needs children feel guilty expressing anger, sadness, and fear, as though allowing their feelings to be known makes them weak or means that they love their child less.
All of these emotions are completely normal, and parents and family members need a safe place to be able to express themselves. Seeking out help from a counselor, or clergy member can give your entire family a safe place to process your emotions.
Mental health professionals have identified stages of grief, as it pertains to adapting to a child with special needs: denial, anxiety, fear guilt, depression, and anger. You may find yourself feeling more than one emotion at a time, or repeating stages as your child grows and develops. This is completely normal.
There is no “wrong” way to grieve, every person is unique. You need to make sure to take the time to allow yourself to express your emotions as your family adapts to a new normal.
4 Self Care
Parents of children with special needs spend so much time caring for the basic needs of their children that it’s easy to forget to take time out for self care. Taking care of your needs enables you to meet the demands of caring for a child with special needs.
Here are a few suggestions for ways to take care of your needs:
- get support from other parents
- accept offers of help, and seek out help when you need it
- take time for a walk, write in a journal, read a book
- cry when you need to
- get enough rest
- eat healthy
- seek out professional counseling if necessary
Taking time to meet with other parents of special needs children can offer you a wealth of practical information. Other parents of special needs children have been exactly where you are, and know what you’re going through in a way that no one else can. Their wisdom and advice will prove to be invaluable as you begin this journey.
Support groups are a great way for the entire family to get the support that they need.
Nurturing Your Marriage
Eighty percent of marriages end in divorce in families where a child has special needs. In addition to the stressors that affect every couple, parents of special needs children have the added emotional, physical, and financial stress that comes with caring for a child with special needs.It is important to take time to nurture your relationship with your spouse, if you expect to beat the odds.
Taking time out for one on one time with your spouse, away from home. Find a friend , relative, or respite care service to give you and your spouse a much needed break from your daily activities as a caregiver.
Seek counseling with a professional or clergy, if needed. Sometimes the lines of communication get cut off and having outside help to have you work through your emotions is necessary. Finding a safe place for you and your spouse to express concerns and emotions could be the thing that keeps your marriage from becoming a statistic.
For six million families in the United States, family life revolves around the care of a child with special needs. Because of the fact that a child with special needs requires so much attention that “healthy” siblings can often feel neglected.
Be sure that you talk with your child about what conditions your special needs child is dealing with before bring him or her home. Educating your child can help alleviate any fears he or she may have.
Siblings of special needs children often have their needs neglected, even under the best of circumstances. It is easy, and sometimes necessary, for parents to put the needs of other children in the home on the back burner, in order to care for a child with special needs.
Older siblings are often called upon to care for a sibling with special needs, or help extra around the house. While older children learn to serve others and be selfless in doing this, there is also a sense of a childhood that was cut short or lost completely. Younger siblings are often required to be more independent than others their age because so much time is needed to care for a sibling with special needs.
Some siblings feel the need to be “perfect” in order to make up for their sibling’s disabilities. They may feel guilty for being the “normal” child, or resent the time parents dedicate to the care of the sibling with disabilities.
Living with a sibling with special needs gives children a perspective that few people can grasp. They are generally more mature, compassionate, and tend to be more responsible than their peers.
2 Early Intervention Services
Going home with baby can seem overwhelming after having a team of healthcare professionals by your side to answer questions and give practical advice on how to care for your child with special needs. Ongoing support is crucial for families with special needs children.
Early intervention is crucial for baby’s well being. Support services such as physical therapy, speech therapy, and feeding clinics offer education and support for the families of special needs children.
These support services work in harmony with baby’s healthcare team to address any issues your child may be having as a result of his or her disability or chronic illness. Services may be offered for free, or on a sliding scale fee, depending on your financial situation and location.
Physical therapists often visit your child at home for one on one care. This will give you a chance to ask any questions that you may have. You will be shown exercises that will address your baby’s particular needs.
Preparing Your Home
While baby is still in the hospital, you can begin to prepare your home for his or her arrival. Along with the regular preparations that you need to make, you may have some additional work ahead of you, depending on baby’s condition.
If baby will be coming home using monitors, you will want to notify EMS of baby’s condition so that they can be prepared to respond, should the need arise. You may also want to speak with someone at the hospital where baby will be transported, to make sure that they are prepared to care for your baby.
Exposure to tobacco smoke is not healthy for any newborn, but it can be especially harmful to a baby with breathing issues or other chronic illness. No one should be allowed to smoke where baby is present.
1 Finding Childcare
Finding childcare for a child with special needs can be a big concern for families where both parents have to work to provide for the family.
The Americans With Disabilities Act requires all licensed child care providers to be able to accommodate children with special needs and prevents them from refusing to care for a child based on disabilities that the child may have.
Before you begin your search for childcare, it is important that you educate yourself in regards to your child’s rights under the ADA.
Some things you need to consider when choosing childcare for a child with special needs are:
- Is the facility familiar with your child’s rights under the ADA?
- Does the facility meet state licensure requirements? Have there been any issues that have caused the facility to be investigated by the state?
- What training does the facility require for its staff? Are they trained in the care of children with disabilities and special needs?
- What are the staff to child ratios? Even though the facility may be within legal limits, it is better to choose a facility where the staff isn’t stretched to their limits.
- Does the facility hold any special accreditations?
- Visit the facility at various times of the day to observe. Are the children clean and well cared for? Is the facility itself clean and orderly?
You may want to consider one on one care for your child in your home with an experienced caregiver. Thoroughly research your potential caregiver’s background and check references. A trial run while you are in the home is a good way to determine if a caregiver is a good fit for your family.
Ask other parents of children with special needs for childcare referrals. College students or nursing school students are another great option to consider.
In the whirlwind of activity following baby’s birth, don’t forget to celebrate this precious new life! Take pictures, record milestones, do all of the things that you would do with any other baby!
Life with your child with special needs will have its challenges, but the journey is also full of beauty, as well. Take time to enjoy your child and celebrate life!