Being told there is a possibility that your growing baby may have a medical condition or disability is very difficult news to hear, and you are likely to experience a range of difficult emotions. Waiting for the results of tests or a diagnosis can be agonizing.
Establishing an open, honest and supportive way of communicating with a partner or support person may be difficult at the beginning, but is important. The way you communicate with each other will be a strong factor in determining how you cope in the long term additional needs your child may have.
Family and friends may be a great source of support. Although they may not have exactly the same experience as you, they'll be able to help you with the practical everyday things that may be forgotten, both when a new diagnosis is made, and when you are attending appointments before and after the baby is born. They could help with the shopping or look after your other children or simply be there for a chat. Any practical support you can get from family and friends will relieve some of the tension and stresses you may be feeling.
It's a subject that pregnancy books tend to gloss over and prenatal classes frequently choose to ignore -- the possibility that you might give birth to anything other than a picture-perfect baby. Consequently, those couples that do end up giving birth to babies with special needs can find themselves feeling shocked and alone.
That was certainly the case for Monique Gibbons, 28, whose second child, Maddy, was born with Down Syndrome and a related congenital heart defect ten months ago. Monique recalls what those first few days were like as she struggled to come to grips with this unexpected development:
"I thought the world had crashed around me and I felt helpless. We had no inkling of her condition during our pregnancy and in one day we were informed that our daughter would not be the baby we had expected [a "perfect" baby] and, what's more, she was going to require open-heart surgery. It was heartbreaking at first as we didn't know what to expect with the Down syndrome.
My advice to other parents who've just been faced with a scary diagnosis like this would be to try not to draw conclusions about your baby's diagnosis without researching what the condition really means, and to keep in mind that the condition, in all likelihood, will be different from child to child."
Like many couples that welcome babies with special needs, the Gibbons had to contend with their daughter's extended hospitalization. While Monique commuted to the hospital to be with her daughter most days, there were times when she needed to take a break from the NICU environment. Because she couldn't bear the thought of Maddy being there on her own, Monique arranged for her mother to go and spend some time with the baby on days when she was taking a break. "That helped to ease my guilt a little, knowing that my mom would be there."
Another key challenge that the Gibbons faced during their daughter's early weeks of life was dealing with the reactions of other people. While family members have been generally very supportive, Monique has been shocked by the reactions of some of the strangers she encounters while she's running errands with Maddy in tow.
Her message to these people is simple, yet direct: "I wish that other people would accept Maddy for who she is rather than just focusing on her Down Syndrome -- that they'd realize that a baby with special needs is a baby first and foremost. The condition is a secondary thing. I wish people would realize that parents love their children unconditionally and want society to accept their children for who they are. Every child is special, no matter what his or her limitations. A child with special needs is of no lesser value than any other child."
If you are a parent of a child with disabilities, stress can be a uniquely pervasive and isolating experience. Some parents experience a variety of emotions when learning their child has special needs. Here are the stages of grief we often feel when learning our child's diagnosis.
Grief & Loss: Internal Contributors to Stress
As parents, we develop hopes and dreams about who our baby will be in the world and how we will be as parents. This process of creating an internal life for our baby and ourselves is a natural part of what all parents go through. We do not expect that our baby will be born with, or develop, a disability or special need; when that happens, much of what we imagined and planned is forever changed.
For parents of children with special needs, feelings of stress are often compounded by a profound sense of grief that results from this loss of one’s initial hopes, dreams and expectations. These feelings can be similar to those experienced when we encounter any other significant loss, such as a death or divorce. Recent research has indicated that parents of children with special needs may even experience feelings and symptoms of traumatic stress, particularly at the time of their child’s diagnosis. These feelings of grief and loss are often experienced but rarely spoken about or shared. Parents may be worried that expressing their feelings of anger, depression or fear may not be welcomed or tolerated by those around them. They may even feel pressure from family and friends to be “strong” or to remain positive, leaving those feelings of grief without a place for expression. It is important for families to understand and talk about these feelings, and to know that what they are feeling is natural.
States of Grief
We typically think of grief as having distinct “states” (Moses, 1987). For parents of children with special needs, grief rarely happens in a predictable or linear fashion. Oftentimes, the sense of loss is on-going and it is very common for parents to re-experience various feelings of grief at many points throughout their child’s development. A parent who may have adjusted expectations for their child’s needs at home may find themselves again experiencing feelings of denial, fear or depression when presented with new challenges their child is facing at school.While these feelings are often difficult to sit with and even harder to talk about, it is important to remember that all of the feeling states associated with grief serve a purpose and help us to cope, manage and mobilize. The feeling states of grief that we all experience following loss are:
•Denial •Anxiety • Fear • Guilt • Depression • Anger
Every parent is different, and grief is a uniquely individual process. There is no “right” or “wrong” way to experience grief; however, parents need to have the space to fully experience and express all of these important feelings. Letting go of the hopes and dreams that we originally had, and which no longer serve us, is an exceptionally complicated and complex process. Doing so can help us connect more fully with what is right in front of us, and can enables us to develop and create new hopes, expectations and dreams for ourselves and our family.
Outside Stressors Also Impact Families
Parents also experience stress due to the challenging external realities of raising a child with special needs. Parents often find themselves juggling the daily needs of their family with medical and therapy appointments, teacher meetings and advocating for services. Siblings may experience stress; feeling overlooked or overly relied upon. Financial pressures may develop when parents are unable or choose not to work in order to care for their child, or when families need to pay for services that are not covered by insurance or other agencies.
For many parents, support is limited. Agencies that once provided services have been impacted by state and local budget cuts. Supportive services for families, such as respite care, are being greatly reduced or eliminated. Parents may experience long waitlists or delays in getting the necessary and needed services for their children and for themselves.
Support for Parents of Children with Special Needs
Take time for yourself.Carving out time to relax, read, talk to friends, or do whatever else that helps you to nourish yourself cannot be overstated. We cannot care for others unless we also find ways to take care of ourselves. Taking time to rejuvenate and relax will help you respond to daily stressors and be more available to your children and partner
Express and share your feelings of grief. Finding a way to share your story with trusted friends, family or professionals will help with feelings of isolation and hopelessness. It will help clear the way for new strengths and gains to be discovered. Additionally, it will help those around you to know and understand your experience so that they may be able to offer support in more effective ways.
Seek out Parent and Peer Support Groups. Knowing that others “have been there” can be a very comforting. Many early intervention programs offer groups; they can be specific to parents who have children with particular disabilities, or be more general support groups offering parents a chance to share and to have an hour or so to just sit and relax. For parents in remote areas or for those who have difficulty leaving their home for extended periods of time, the internet offers many “virtual” peer/support groups.
Seek out intervention programs or individuals who take a family- or relationship-based approach to serving your child. Working with agencies or individuals who focus on the parent-child relationship, and on how to utilize this relationship to help promote the growth and development of your child, can help you feel included, supported, and confident. Interventionists who employ a relationship-based approach to providing services for your child can help promote your feelings of connection and competence with your child and can reduce stress by providing another forum in which you can discuss your experiences, concerns and feelings.
Whether your family member with special needs is a child or an adult, combining personal, caregiving, and everyday needs can be challenging. Below are general caregiving tips and links to information on specific health topics to help you and those you care for stay safe and healthy.
Take time to learn about your family member’s condition and special need requirements.
Talk to health care providers and other health professionals that work with families with special needs.
Understand the needs of you and your family, and work together to make good choices about housing, schools, health services, and more.
Be aware of signs of mental or physical abuse. Notice how others care for the person with special needs.
Seek help from family and friends when you need it.
Join a local or online support group.
Expand your search for local and national groups that provide services, recreation, and information for families with special needs, and not just a specific issue.
Find out about local, state, federal, or other programs that may be available.
Be an advocate.
Ask questions, and know your rights.
Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation.
Inform other caregivers of any special conditions or instructions. Always remind dental or medical staff of this information each time you visit.
Document the medical history of your family member with special needs, and keep this information current.
Make sure your employer understands your circumstances or limitations. Arrange for flexible scheduling when needed.
Focus on what you and your family member with special needscando.
Recognize appropriate milestones to celebrate. Look for memorable events and achievements to honor family members with special needs.
Take care of yourself.
Stay healthy for yourself and those you care for.
Work to maintain your personal interests, hobbies, and friendships. Balance is key.
Set reasonable expectations about caregiving. This may lower stress and make you a more effective caregiver.
Take a break. Short or long breaks can be helpful.
Families with Special Needs: Caregiving Tips
WELCOME TO HOLLAND
By: Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.