Happy Mother’s Day – Take a Break!

With Mother’s Day just around the corner, many of us are buying cards or gifts and planning meals or excursions to pay tribute to the mothers in our lives. Those of us who are mothers ourselves may be contemplating the joys of motherhood, while also looking forward to some TLC from our children, spouses or partners. Despite our love for our families, sometimes Mother’s Day TLC means getting away from the people we love most. Like the old TV commercial with the mom in the bath tub who asks her Calgon bath oil to “take her away,” sometimes mom just needs a break, some time to herself, and a chance to let go of both personal and professional responsibilities.

Getting away from it all is hard enough when your child doesn’t have significant disabilities. It’s a whole lot more complicated when your child has special emotional, behavioral or physical needs. It can also be even more essential to your health, the health of your family and ultimately, the health of your special needs child.

Finding care for a child with special needs is not as simple as calling the teenager down the street, or asking a grandparent to pitch in. When a child has complicated health issues, it’s essential that whomever is in charge, has the skills or training to keep them safe and contented.

One way to find care you can count on, is by taking advantage of respite care. Just what is respite care? According to the ARCH National Respite Network, “respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.”

Sadly, despite the documented physical, emotional, psychological and spiritual health risks to caregivers who don’t make time for themselves and their own needs, recent statistics from the National Alliance of Caregiving and AARP found that “Eighty-one percent of family caregivers of children with special health care needs do not use respite.” Likewise, although they say they desire more time and “life balance,” 86 percent of family caregivers for young adults ages 18-49 “have not used a respite or companion service to free up their time.”

The reasons for this vary. Some include:

  • Concerns that no one else will be able to provide the same level of care for their child that they can
  • The belief that they “should” be able to manage on their own
  • Guilt about their desire for a break and for feelings of sadness, anger or frustration about their child’s significant needs
  • Lack of awareness of the toll caregiving is having on the caregiver and the family
  • Lack of awareness about respite resources

According to KidsHealth From Nemours, respite care comes in a variety of types including:

  • Home-based care provided by a skilled caregiver for a few hours a day, weekly or as often as needed
  • Drop-off day programs often based at schools, healthcare facilities and faith-based programs
  • Respite programs sponsored by community-based agencies, residential facilities and camps
  • Parent co-ops when families of children with special needs take turns watching each other’s children

Though respite care can be expensive, programs that help with funding do exist if parents know where to find them, are willing to do the leg-work and have the patience to negotiate the process.

“Most children with special needs qualify for home and community-based Medicaid waivers that can cover the cost of respite care. Many programs have waiting lists for the waivers, so it’s important to apply early,” advises Nemours.

Additionally says Nemours, “A few states get funds through Title 5 block grants, which is money from a federal program that’s designed to help children and families with special needs.” Military families’ child care benefits may include financial support for respite care, says Nemours.

Once parents access respite care, the benefits to the family are huge. According to United Cerebral Palsy, respite care provides families of children with special needs much needed relaxation; enjoyment; stability in the form of improved coping skills and ability to manage crises; preservation and strengthening of the family and parental unit; community involvement that prevents feelings of isolation, and time to pursue personal enrichment

Here are some resources to help you find options for various types of respite care:
Local UCP affiliates
Easter Seals
The ARCH National Respite Network
Family to Family Health Information Center
(For military families)  Child Care Aware of America or TRICARE, which provides health benefits for active-duty service members

Happy Mother’s Day to all!

Seven New Year’s Resolutions for Caregivers

As a caregiver, it can be challenging to find time to care for yourself. But self-care is essential, especially when you are responsible for the care of others. Not convinced? Take it from the Dalai Lama: “…if you feel ‘burnout’ setting in, if you feel demoralized and exhausted, it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective,” said the esteemed spiritual leader.

In keeping with the theme of self-care, we’ve come up with the following New Year’s Resolutions for Caregivers. Take good care in 2018!

1. Take care of your body
We know, who has time for exercise or preparing healthy meals when you’re a busy caregiver? The truth is, you don’t have the time not to care for your health. After all, if you get sick, who will care for your child, parent, spouse, students or clients? So, come up with a work-out schedule, take a yoga class, maintain a healthy diet and make and keep your own medical appointments.

2. Take care of your mind
Many of the steps you take to care for your body, will also support your mental health. But when facing burnout from a demanding job as a special education teacher or therapist, or a parent of a child with disabilities, good self-care may also include individual or group counseling. Don’t hesitate to seek it.

3. Maintain social ties
When caring for someone with special needs, it can feel like there’s no time for activities such as parties, girl’s nights out, or even a cup of coffee with a dear friend. Do your best to make time. Having fun will rejuvenate your spirit and renew your energy for caregiving.

4. Make time for other loved ones
Sometimes spouses or siblings get lost in the shuffle, when caring for a sick relative or child with a disability. Be mindful of the need to nurture relationships with those you love, even if it means getting a qualified babysitter, or adult caretaker.

5. Take your vacation days
Teachers and therapists who work with children and adults with disabilities typically get a good number of vacation, sick and personal days. That’s because their jobs are emotionally and physically taxing and they need that time off. Don’t put off vacations, and don’t go to work when you’re ill, you’ll put your health and well-being at risk, and ultimately, you’ll provide less than optimal care to students and clients.

6. Give yourself permission to feel sad, frustrated or angry
Having a positive attitude has many benefits. In fact a recent study at Harvard T.H. Chan School of Public Health found that optimism reduces the risk of dying prematurely. That said, it’s also important to acknowledge and experience feelings of sadness, frustration and anger when they inevitably occur. Another study at Harvard and the University of Rochester found that “Emotion suppression may convey risk for earlier death, including death from cancer.” So, practice recognizing and tolerating negative feelings, but then practice letting them go. Meditation is a great way to learn these skills.

7. Treat yourself
Splurge on a massage, mani-pedi, caregivers retreat or weekend away with your partner or best friend. You’re worth it and so are your children, students or clients. All will benefit from their interactions with a revitalized you!


New Year’s Resolutions for Caregivers

Photo of mother and son

Whether you’re a parent of a child with special needs, a special educator, occupational or physical therapist, it’s safe to say that you expend a tremendous amount of time and a great deal of physical and emotional energy caring for others. When that’s the case, it’s easy to neglect your own needs. Doing so may be more detrimental to your physical and mental health than you realize.

According to the Child Mind Institute, “Studies show that parents of children with developmental, psychiatric or learning disorders are far more likely than others to experience anxiety, depression, insomnia, fatigue and marital problems.”

Furthermore, a British study, on the psychosocial, endocrine and immune consequences of caring for a child with autism or ADHD found parents of children with ADHD and autism who experience chronic stress on a daily basis, are more susceptible to physical maladies.

“This study found that parents of children with either autism or ADHD had significantly higher levels of both cortisol, the stress hormone, and CRP, a biomarker linked to everything from colorectal cancer to diabetes to heart disease,” the Child Mind Institute reports.

Such stressors and the symptoms they cause aren’t limited to parents of children with ADHD and autism. Indeed, most parents of children with special needs are negatively affected by chronic stress and its symptoms.
Likewise, special education teachers and therapists are also at a higher risk for stress-related health problems which when severe can create a condition known as “compassion fatigue.”

According to Good Therapy.com, “Compassion fatigue can be a serious occupational hazard for those in any kind of helping profession, with a majority of those in the field reporting experiencing at least some degree of it in their lives. This is no surprise, as it is typically those with the most empathy who are the most at risk.”

Says Good Therapy.com, the symptoms of compassion fatigue may include, physical and emotional exhaustion, irritability, hypersensitivity, lack of empathy, anger, guilt, anxiety, headaches, insomnia, weight loss, and career dissatisfaction.

Fortunately, much can be done to prevent and manage caregivers’ stress.  Here are some tips that may relieve stress-related symptoms and/or compassion fatigue in the New Year.

Step 1: Check in with yourself, mentally and physically

As family or professional caregivers, our lives can be so busy it may be hard to find the time or energy to know how we’re feeling. If we don’t check in with ourselves to determine if we are hungry, tired, angry, depressed or anxious, we won’t be able to take steps to remedy the situation.

“Think of the mindful check-in as taking a scan of the internal weather you’re experiencing: noticing physical sensations, your state of mind and any thoughts that are arising, and any emotions that are present,” suggests Bob Stahl of Mindful.org.

Step 2: Take (guilt-free) time for yourself

It may seem like even ten minutes to yourself is too much to spare, but without carving out the time, you’ll be no good for your special needs child, students, clients or anyone else. It’s easy to fall into the trap of thinking that you’re the only one who can care for your child, clients or students.  Yet even if they have complex medical needs, with the proper training and precautions, most likely there’s a friend, family member or professional who’s up to the task.

So, designate a date-night or Girls’ Night Out. Leave work on time for a change and take the vacation time to which you’re entitled. Find something that brings you joy—whether that’s making art or music, doing yoga, cooking, reading mysteries or binge-watching your favorite TV series—and give yourself permission to engage fully.

Step 3: Find a support group

Parents, siblings, educators and therapists who care for children with special needs can all benefit from having a place to share their feelings about caregiving with others who can identify. Involvement in a support group or (for professionals), a peer supervision group can do wonders for caregivers’ state of mind. You’ll remember you’re not alone, that others have experienced some of the same feelings you have, and you may also pick up valuable tips and resource recommendations. If you’re really lucky, support groups can lead to strong friendships for you and play-dates for your child.

Step 4: Take good care

We know it’s easier said than done, but healthy eating, sleeping and exercise will improve mood, prevent medical problems and enable you to better manage the challenges of having a child or working with children with disabilities.

“Health is a balancing act between health liabilities and health assets,” says Dr. Leonaura Rhodes, writing for the Expert Beacon. “Reduce health liabilities, which are things that are bad for your health, including poor diet, inactivity, smoking, spending time with toxic people and avoiding medical care for health problems. Health assets should be increased with healthy diet, good hydration, positive thinking, good sleep and having fun and nurturing yourself.”

Step 5: Seek out help

Don’t be afraid to find support if you’re feeling sad, anxious or overwhelmed. A phone call or coffee date with a good friend or family member may be sufficient. Yet, seeing a therapist or counselor is also a good alternative.


Happy Mothers Day to the Caregivers Among Us!

Mother's Day graphic

Whether you’re a mother, a teacher or a therapist, much of your time is spent attending to the needs of others. Caregiving is always challenging, but when the child or children you care for have severe disabilities, your caregiving responsibilities are especially demanding.

Caregiving can take quite a toll on people who care for family members.

According to statistics collected by the Caregiver Action Network:

·  More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

·  Approximately 66% of family caregivers are women. More than 37% have children or grandchildren under 18 years old living with them.

·  14% of family caregivers care for a special needs child with an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children.

·  23% of family caregivers caring for loved ones for 5 years or more report their health is fair or poor.

·  Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.

·  63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.

·  40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.

·  More than 1 in 10 (11%) of family caregivers report that caregiving has caused their physical health to deteriorate.

··  64% of working parents caring for a special needs child believe that caregiving responsibility has negatively impacted their work performance.

If you are a parent caring for a child who has disabilities, be sure to recognize the signs of burnout. According to Kids Health from Nemours, “caregiver burnout is a true state of exhaustion, both physical and emotional. It tends to happen when caregivers try to “do it all” without getting the help or rest they need. Because caregivers tend to be on autopilot, they’re not usually quick to recognize burnout in themselves. Other people might notice the symptoms first, which can include changes in appetite and sleep patterns, withdrawal from social activities, increased anxiety, or emotions that are either heightened (such as excessive crying or irritability) or decreased (feeling empty or unconcerned). Take it seriously if someone you trust notices any of these things in you.”

Teachers and therapists working with children with special needs are disproportionately at risk for burnout compared to those in other professions. One of the major causes of burnout is “compassion fatigue.”

The Compassion Fatigue Awareness Project and Dr. Charles Figley, Director of the Tulane University Traumatology Clinic define compassion fatigue as “a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper.”

“Caring too much can hurt,” says Figley. “When caregivers focus on others without practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labeled: Compassion Fatigue”

Despite these difficult realities, much can be done to prevent the symptoms and negative long-term effects of compassion fatigue and burnout. Whether you’re a parent or professional caregiver, it all starts with self-care. Taking the time to nurture and replenish yourself is critically important. Here are some suggestions from Kids Health from Nemours:

1.  Take breaks

2.  Eat right

3.  Exercise

4.  Stay organized

5.  Ask for health

6.  Find a support group

7.  Acknowledge your feelings

8.  Be aware of the signs of burnout

And don’t forget to treat yourself well  this Mother’s Day!