When your child is diagnosed with a disability it can affect you deeply. You will experience many feelings and reactions.
Sometimes a diagnosis can bring a sense of relief by providing answers and starting appropriate treatment, therapy and services,
but some of the emotions that accompany a diagnosis are very difficult to handle, and are huge challenges to overcome.
Families often identify the following as challenges they have faced when their child is diagnosed with a disability or special
health care needs:
Grief, preoccupation with guilt, and anger
Uncertainty and confusion about the diagnosis
Questioning or denying the diagnosis, thinking or acting as if "nothing is wrong"
Avoidance
Attempting to be overly optimistic or dismissive
Isolation - professionals or programs seem unavailable or inaccessible, family and friends may withdraw. Sometimes it feels
like nobody understands or cares.
All of these reactions are normal and common among parents and family members when their child has received a diagnosis. Because
parents care deeply about the child, her life, and her future, grief is a natural part of the process.
However, one helpful thing to remember is that we love our children for who they are, and a diagnosis does not change who
your child is. A diagnosis names the condition a child has, and hopefully helps us know how to best treat the condition, but
our child is still the same wonderful, unique child we have loved since he or she was born.
One parent says:
"When Adam was diagnosed with Autism at 4 years old, the doctor said something that really helped: “This diagnosis does not
change your son; he is still Adam.” It was so important to hear someone say that – because I loved every quirky little thing
about my little boy. There was nothing about him that wasn’t perfect to me."
Take Care of Yourself First
Most people think it is strange when an airline attendant instructs you to put an oxygen mask on yourself before anyone else--including
a child--in the case of an emergency. Most of us would still put the mask on the child first. But believe it or not, the
airlines might have something here – in order to take care of others, we must first take care of ourselves.
Taking care of your child who requires long term or critical care can be difficult. It has been documented that caregivers
have an increased risk of using alcohol, drugs, and tobacco as coping mechanisms, more so than their counterparts. Depression,
stress, anxiety, and marital problems can also result from long term caregiving. The positive news is that you can take a
proactive approach to avoid negative effects. By taking care of yourself, you can mitigate the stresses that can result from
caring for others.
How can I take care of myself and reduce stress?
It seems that while taking care of the others we often forget to take care of ourselves, but self-care will improve our quality
of life and long-term happiness. Exercise, eating a healthy diet, getting enough rest, keeping a journal, utilizing respite,
and being socially active can all contribute to your wellbeing, and as a result, to the health and wellbeing of your child
and family.
Only you can take responsibility for your care. It is an essential part of your job. Be sure to keep the big picture in mind
by considering all you do, and all you can do. Can you squeeze in a 15-minute walk to stretch your legs and relax your mind?
Can you take care of important emails or correspondence while your child is sleeping? Or maybe you can take a nap, too.
Evaluate the everyday needs of your child:
Does he need assistance with bathing?
Can she walk or eat by herself?
Does he have behavioral issues that need attention?
Does she need constant supervision?
Does he have physical, occupational, speech, or behavioral therapy needs? Do these need to be carried out on a regular basis?
Can others be trained to help care for and assist her?
Once you determine your child's needs, it is time to determine YOUR needs. Evaluating the needs and cares of your children,
yourself, and your partner by making lists can help you to plan ways to involve others who want to help. By clearly identifying
ways for them to help and by setting goals for yourself and your child, you can begin to minimize your stress as a caregiver.
Evaluate your own needs:
In what areas do you need help?
What resources are there to help you? Don’t forget community, friends, family, and religious affiliations. Write down the
names of people who have offered to help with anything.
Make a list of ways people can help you. When they offer, you can be ready with some ideas that could really help. Even small
acts, like cooking a meal, staying with your child or children for a couple of hours, or reading to your child while you take
a much needed nap, can make a tremendous difference.
Organize and record your child’s healthcare information and schedule. Type out the medications she needs, and her daily, weekly,
and monthly activities. Create a notebook that contains all of the important information about your child (see our Care Notebook page). By keeping this information organized, you can easily take it to all of the doctor appointments, instead of repeating
it each and every time. A care notebook also can help as a tool for other caregivers who may work with your child.
Set goals in order to make things work for you. Break the goals down to small items that can be achieved in a very short time.
Sometimes long-term goals can be overwhelming and it doesn’t seem we can ever reach them. By breaking big goals into steps,
we can do small things until we meet the larger goal.
Remember, it is not selfish to focus on your own needs and desires when you are a caregiver—it's an important part of your
job. You are important, and you are the person responsible for your care.
Resources
Information & Support
For Parents and Patients
Family Caregiver Alliance Here, you'll find information about education, services, research, and advocacy to support family caregivers. A navigator
helps locate state-specific services.
Empowering Caregivers Provides newsletters, message boards, and articles for family caregivers.
Green Tree Yoga - Audio Yoga Breaks Yoga for You is for people of all ages, shapes, sizes and abilities. Take a quick yoga break at work, school, at home, or
offer it at a meeting. Whatever you are wearing is fine. Just release some physical and mental stress as you listen and take
an easy yoga pause. Be more productive, be more focused and relaxed, and be healthier. Several are specifically for kids.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization
or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited
to web-based services, provider locator services, and organizations that serve children from across the nation.
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