Caring for Yourself
Taking care of children, including children and youth with special health care needs (CYSHCN), requires parents to be at their best. Parents need to be well-rested, clear-headed, and healthy to deal with everyday stresses and bad days. This page will talk about dealing with a diagnosis and caring for yourself, physically and mentally, so that you are ready to care for your child’s needs.
Reactions to a Diagnosis
When your child is diagnosed with a disability it can affect you deeply. You may have many feelings and reactions. Sometimes a diagnosis brings a sense of relief because it can give answers and help you to start appropriate treatment, therapy, and services, but some of the feelings that go with a diagnosis can be very hard to handle, and may be huge challenges to deal with.
Families can have common reactions when their child is diagnosed with a disability or special health care needs:
- Grief, guilt, and anger
- Uncertainty and confusion about the diagnosis
- Questioning or denying the diagnosis, thinking or acting as if "nothing is wrong"
- Avoiding the subject
- Trying to be overly optimistic or dismissive
- Feeling alone—professionals or programs seem unavailable or out of reach; family and friends may withdraw. Sometimes it feels like nobody understands or cares.
A Diagnosis Does Not Change the Child
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 said: "When Adam was diagnosed with autism at four 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
Taking care of a child who needs long term or critical care can be hard. It has been noted that caregivers have a greater risk of using alcohol, drugs, and tobacco as a way to cope. Depression, stress, anxiety, and relationship 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 ease the stresses that can result from caring for others.
How can I reduce stress and take care of myself?
Child's Needs
- 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?
Your Needs
- In what ways do you need help?
- Make a list of the ways you need help and support.
- Who is there to help you?
- Write down names of friends, and people in your family and community who have offered to help with anything.
- Make a note of any resources in the community that could help.
- 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 big difference.
- Organize and record your child’s healthcare information
and schedule. This includes the medications she needs, and her daily,
weekly, and monthly activities.
- Create a notebook that has all of the
important information about your child (see our Care Notebook page).
- By keeping this information together, you can easily take it to 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.
- Create a notebook that has all of the
important information about your child (see our Care Notebook page).
- Set goals to make things work for you.
- Break the goals down to small items that can
you can do in a very short time.
- Sometimes long-term goals can seem overwhelming and hard to reach. By breaking big goals into steps, we can do small things until we meet the larger goal.
- Break the goals down to small items that can
you can do in a very short time.
- Could you benefit from Respite Care?
- Find out about available Crisis/Respite Care (see NW providers [2]) services.
- Think about any other needs your family has and write these down.
Looking at the needs you, your child, and your family have by making lists can help you to plan ways to involve others who want to help. By making note of ways for others to help, keeping things organized, and setting goals for yourself and your child, you can start to reduce your stress as a caregiver
Remember, it is not selfish to focus on your own needs when you are a caregiver—it's a vital 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 support groups, education, and advocacy news for family caregivers. A navigator helps
locate state-specific services.
Services for Patients & Families Nationwide (NW)
| Service Categories | # of providers* in: | NW | Partner states (4) (show) | | NM | NV | RI | UT | |
|---|---|---|---|---|---|---|---|---|---|
| Crisis/Respite Care | 2 | 12 | 11 | 13 | 37 | ||||
| Family Support Services | 13 | 23 | 66 | 45 | 31 | ||||
| Local Support Groups, General | 2 | 9 | 39 | 8 | 63 | ||||
| Rec Centers, Parks, Zoos & Museums | 2 | 9 | 38 | 22 | 61 | ||||
| Recreation Therapy | 12 | 4 | |||||||
For services not listed above, browse our Services categories or search our database.
* 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.