8 Disabilities-themed Blogs to Check Out Now!

Six People Sitting with Laptops and Concept Art about Blogs behind them

If you’re reading this right now, welcome to Enabling Devices’ blog. If you’re not a regular reader, we hope you’ll become one. If you do read us regularly, we’d love to know what you think about the blog. Are there topics we cover that are particularly interesting? Are there topics we haven’t covered that you’d like us to explore? If so, please share your impressions, suggestions and any feedback you may have.

Though we’re partial to our own blog, we can’t pretend that we’re the only disabilities-themed blog or news source on the internet. In fact, there are lots of blogs and websites that present valuable information, opinions, news and support for people with disabilities, their families, teachers and therapists. Each blog has its own voice, its own tone and its own point of view. Below, you will find a list including many of the best blogs and websites on disabilities-related themes. Happy reading and don’t forget to visit us again!

The Mighty
The Mighty isn’t so much a blog as it’s an online community that provides support to people affected by disabilities and other health and mental health challenges. It includes stories, news and videos on over 600 topics including autism, cancer, cognitive disabilities, mental illness, and rare diseases.  Written by people personally affected by disabilities and health concerns, readers will feel empowered, understood, and be able to connect with other people affected by disability.

Wheelchair Kamikaze
Though Wheelchair Kamikaze’s founder Marc Stecker hasn’t been writing lately, it’s well worth it to check out his blog for posts written from 2015-2018. The award-winning blog by Stecker, who has multiple sclerosis, is beautifully written and full of well-researched scientific information. It’s also notable for Stecker’s sense of humor and his moving and relatable reflections on having a chronic illness.

Disability Scoop
The largest disability-related news organization in the country, Disability Scoop provides daily reporting about topics of interest to the disabilities community. Topics include autism, intellectual disabilities, cerebral palsy, Down syndrome and more. The online publication looks at disabilities in terms of politics, education, science, money and more.

Have Wheelchair Will Travel
A travel blog for wheelchair users, Have Wheelchair Will Travel was founded by an Australian woman named Julie, who loves to travel. When her son was born with CP, she and the rest of her family needed to adapt their traveling to include her son’s wheelchair. As she explains on the “About Us” page: “The aim of this website is to give some tips on places we’ve found accommodating, wheelchair accessible/friendly and some fun things we found in our travels.”

Love That Max (A Blog for Kids with Disabilities Who Kick Butt)
As you might guess, Love That Max was started by Max’s Mom, Ellen Seidman, a magazine editor turned award-winning blogger. After Max was diagnosed with CP, Seidman started this blog to chronicle Max’s triumphs and her own experiences parenting a child with CP. The blog also includes posts from other parents of children with special needs who share their joys, struggles and accomplishments.

Exceptional Parent
An online magazine that covers a range of issues around parenting children with disabilities, Exceptional Parent has been around for 47 years. The magazine covers news, gives practical advice and emotional support. Its mission is “to improve the quality of life for all people with chronic life-long conditions, as well the physicians, allied health care and educational professionals who are involved in their care and development.“

 American Foundation for the Blind Blog
This blog provides news about a variety of issues that affect the blind: employment, disabilities law, education, sports, arts and leisure and more.

Perkins School for the Blind Stories
Even if you or your family member are not students at the historic Perkins School, you can benefit from blogposts about issues from parenting to education to disabilities policy. The oldest school for the blind in the country, Perkins was home to Helen Keller and Annie Sullivan!

Strategies and Products for Caregiving When a Loved One Has Cerebral Palsy

Although it often gets lumped in with chronic “diseases,” cerebral palsy is not a disease. It is a condition that results from damage to areas of the brain responsible for movement a child experiences while they are in the womb or, in some cases, immediately after birth. Doctors can usually diagnose cerebral palsy, or CP, early on — during or not long after infancy.

Because cerebral palsy treatment and severity can look different for each person, developing a plan for how to care for your loved one with this condition or how to help someone with CP is a critical part of helping them manage it throughout childhood and adulthood. No matter how much you love someone, caring for a child or adult with cerebral palsy is stressful. It puts a lot of pressure on you every day. And, if you aren’t careful, the ins and outs of figuring out how to manage your loved one’s symptoms can quickly become overwhelming.

While we can’t cure cerebral palsy or suddenly make all your stressors disappear, specific strategies and products can help make your job as a caregiver just a little bit easier.

What Is Cerebral Palsy?

Cerebral palsy is a condition that results when a child experiences brain damage in the womb or immediately after birth. Marked by problems related to movement, muscle tone and posture, its effects are permanent.

What-is-cerebral-palsy

The severity of cerebral palsy can vary, providing challenges that are unique for every caregiver. Some people with cerebral palsy can walk on their own, while others must rely on a wheelchair. Some can communicate their needs, and others are non-verbal. While cerebral palsy itself is a neurological condition, it can lead to a variety of other problems for individuals. While each person is different, in general, someone with cerebral palsy is also more likely to struggle with:

  • Abnormal perceptions of touch or pain
  • Seizures
  • Cognitive issues
  • Hearing and vision problems
  • Incontinence
  • Intellectual disabilities, including ADD and ADHD
  • Oral diseases
  • Mental health conditions

An individual with CP does face a unique set of challenges, but in today’s world, there many tools and strategies available to help them progress and live happy, productive lives. In many cases, they can make significant strides toward independence, which also relieves some of the pressure on their caregivers.

As a caregiver for someone with cerebral palsy — whether child or adult — you are always looking for ways to help your loved one improve their overall health and well-being. At Enabling Devices, we understand care for cerebral palsy in the home is an ongoing process of education and discovery. You never stop growing and learning, because you are determined to do the best you can as you care for your loved one.

Making Daily Life Easier

When it comes to at-home care for cerebral palsy, there are a lot of products and strategies available to help make life easier. Knowing what’s out there and how it can help you is essential to provide care for someone you love successfully.

living with cerebral palsy routines and care plans

Remember, establishing routines and an effective care plan may take time. After all, figuring out what works best doesn’t usually happen overnight. There will be times of trial and error before you finally settle on what works. You may spend months trying a new product or strategy, only to discover a better option down the road.

CP is a lifelong condition, so taking time to try different strategies and developing a plan that works for your loved one’s unique challenges is the best way to make sure everyone is comfortable and thriving where they are.

As you strive toward this, it’s essential to take time for self-care. Find ways to relieve stress, ask for help — more about that later — and remember to rest. One of the best cerebral palsy caregiving tips is to make sure you are helping yourself, too.

Communication and Language Development

One unique challenge that accompanies caring for someone with cerebral palsy is encouraging communication and language development. While cerebral palsy itself is typically a condition that affects movement, it can have profound cognitive impacts as well. Because of the limitations on their muscle development and function, individuals with cerebral palsy may struggle with facial expressions, gestures, speech, voice production and language — that is, being able to communicate and express their needs in a clear, concise way.

When it comes to how to raise a child with cerebral palsy, one vital job of caregivers is to address these issues when children are young, so as they grow, they learn to communicate and function in the world around them.

communication and language development for cerebral palsy

Some ways parents of children with cerebral palsy can encourage this behavior include:

1. Parallel Talk

This strategy is simple. As your child performs an activity — for example, playing with wooden blocks — you, the parent, talk about what’s happening while they do it. As they play, you might say, “Oh, look, you’re building with blocks. You put the red on top of the blue. Oh no, they fell over!” Think of it as narrating your child’s activities.

2. Self-Talk

This method is similar to parallel talk, only you are narrating what you as the parent are doing, rather than observing your child. As you play with your child, talk about what you are doing. For example, as you play with blocks, you might say, “Here is a yellow block. I think I will put it on top of the red block. Look at that! The red block is shaped like a square.”

3. Expansions and Extensions

In this case, you as the caregiver can add on to your child’s vocabulary to help them expand it. For example, if your child says “Dog,” you can expand it by saying “Fluffy dog.” Or, you can extend it to say, “The man is walking the dog.”

4. Non-Verbal Communication

Non-verbal communication falls into two categories — assisted and unassisted. Assisted includes technologies designed to help non-verbal individuals express themselves, such as computers, speech synthesis machines, or Augmentative & Alternative Communicators (AAC). Enabling Devices has dozens of AAC devices. These devices can be as simple as a one-message communicatormultiple message communicators, or progressive communicators that grow with your child. Unassisted includes communication methods such as sign language. If your child is non-verbal, trying out some of these options can ease frustrations and provide a means for communication.

5. Create Opportunities

Sometimes, the best way to encourage a child’s communication is to give them opportunities to practice. Place a favorite toy just out of their reach, so they will have to ask for it. Or, encourage them to socialize with other people. The more opportunities they have to practice communication, the better they will become at expressing their thoughts, feelings and opinions.

Developing Hand/Eye Coordination and Fine Motor Skills

Hand/eye coordination is an essential function for someone with cerebral palsy. As the use of visual cues to direct and engage the hands in action, hand/eye coordination can be challenging for someone with cerebral palsy because it requires the simultaneous use of the vision system as well as the hands and muscles.

Often mentioned in tandem with fine motor skills, which require tiny muscle movements, hand/eye coordination is the development of the skill of using the vision system and hand muscles simultaneously.

developing hand eye coordination for people with cerebral palsy

One of the best ways to help your loved one develop in one or both of these areas is with one of Enabling Devices’ assistive technologies. These devices provide fun and, often, guided interaction between the individual and their caregiver to help people with cerebral palsy in their development. The goal of these devices is to improve hand/eye coordination, as well as assist individuals with cerebral palsy as they develop and improve their fine motor skills.

1. Shape Sorting

Reminiscent of a popular child’s toy, this low-profile shape sorter — fondly called Drop-in-a-Bucket — is designed for players who have a more limited reach. The bucket has lights on it to attract the user’s attention, as well as music that plays when the user drops the shape into the correct hole. One great thing about this is that it teaches object placement and hand/eye coordination, as well as shape recognition. That combines two crucial functions into one item!

2. Pull and Play Switch

The Pull and Play Switch encourages the practice of three important motions — swiping, grasping and reaching. It can attach to a tabletop, wheelchair or bed rail, and comes with two different sized pulls. The object of the game is to encourage the player to reach for the ball suspended from the frame and then grab on to it with a finger or hand.

3. Stacking Blocks

These Stacking Blocks are designed to develop several skills vital to an individual with cerebral palsy. The object is to hone fine motor skills by placing one block at a time on the stack until it’s complete. As the individual places blocks onto the stack, they can also work on addition and subtraction and hand/eye coordination as they work to use their hands to guide the blocks to the right place.

4. Fine Motor Kit

Two Fine Motor Kits include different items that are designed to help children and teenagers strengthen their fingers and hands, develop grasping skills and hone their fine motor skills. It contains two pairs of easy-grip scissors, several games and the teen kit even has a Glow-in-the-Dark Dreamcatcher.

Daily Living Tasks

Another challenge caregivers often face is enabling your loved one with cerebral palsy to complete daily tasks. Generally speaking, four main tasks comprise the category of daily living — personal hygiene, eating/drinking, dressing and using the bathroom.

daily living tasks for those with cerebral palsy

While the extent of a person’s CP will indeed dictate their ability to perform any of these four activities, it should be the goal of any caregiver to promote as much independence as possible to build and maintain muscle function, as well as for peace of mind. Caregivers cannot be present every second of every day, and teaching an individual with cerebral palsy to perform specific tasks on their own can give them a sense of independence, as well as provide a much-needed respite for you.

Your medical team can provide guidance on how to go about teaching and developing certain skills within an individual with cerebral palsy, but it is critical to find ways to incorporate instruction into daily activities when raising a child with cerebral palsy. For example, use mealtime as a time to gradually teach your loved one to feed themselves. To do this, you can prepare them ahead of time for the table setup, what utensils they will use and what they will be eating. Then, during the meal, work with them on correct posture and the mechanics of chewing, if necessary, as well as identifying unfamiliar foods and the proper way to eat.

There are also a variety of useful products on the market that focus on how to help someone with cerebral palsy as they develop muscle control and the ability to perform daily living tasks. For example, tools like Enabling Devices’ ADL Boards help individuals with cerebral palsy develop the skills they need to dress. Each of the four boards helps with mastery of manipulative skills, including buttons, snaps, laces and zippers.

Over time, if a person’s abilities allow, they can also begin to practice and master specific life skills — that is, skills that help them care for themselves on more than a basic level. These skills might include housework, meal preparation, communication, managing finances and shopping. They can also include pursuing hobbies and activities that are of interest to the individual.

Depending on their abilities, products such as Enabling Devices’ battery-powered scissors provide electronic cutting, promoting independence and allowing someone with limited mobility to cut paper, fabric and other items on their own. While a pair of scissors might seem like no big deal, to a person with physical limitations, the ability to use an everyday object like a pair of scissors can provide a much-needed boost in their self-esteem and joy.

Products for Sensory Needs

Along with the physical challenges that come with cerebral palsy, individuals with this condition can also struggle with sensory processing disorder. While a sensory processing disorder can manifest itself in many different ways, it means they have a heightened sensitivity to things in their environment. These could include fear of loud noises, sensitivity to scratchy fabrics or even failure to respond when they encounter extreme temperatures. Yes, everyone hates startling sounds or the tastes of certain foods, but, for an individual with a sensory processing disorder, these aversions can take on an exaggerated effect to the point where they have a negative physical response to a trigger, such as vomiting when a loud noise happens.

 

products for sensory needs for those with cerebral palsy

Enabling Devices offers a variety of products designed to help individuals with sensory processing disorder, including toys, lights and chairs. We also provide sensory room design services to connect families with special needs to trained professionals who can recommend designs and products tailored to their individual needs.

Essential Products and Adapted Devices

One especially significant tool for individuals with cerebral palsy is the adaptive switch, a button used to activate adapted devices. The size and technology behind switches vary, so there is something out there for individuals of all levels of disability. These switches can make it possible for individuals with cerebral palsy to access a variety of devices including communicators, adapted toys, adapted electronics and even iPads. Enabling Devices has dozens of switches that address a wide range of needs — head switcheshand switchessip & puff switches, mounted switches, and even an eye blink switch.

essential products and adapted devices for people with cerebral palsy

Caregivers can attach switches to mounts, which come in a variety of sizes and designs. The job of a mount is to position a switch in a way that makes it most accessible for a particular individual based upon their physical needs. These can make a huge difference for an individual with limited physical abilities.

What good would switches and mounts be without adapted devices that attach to them? Enabling Devices offers hundreds of adapted devices that work with our switches. These include:

 

Finding Help

Being the parent of a child or adult with cerebral palsy can be both physically and mentally demanding. Just as you are intentional about taking good care of your loved one, you should also be intentional about taking care of yourself. Caregiver burnout can result in depression, anxiety and a variety of mental and physical health issues.

Unfortunately, all the devices and assistive technology in the world cannot prevent a caregiver from overdoing it. As a caregiver, you have a responsibility to yourself, as well as your loved one, to ask for help. This assistance could be in the form of a babysitter who comes once a week while you go to a movie, or it could be a trained professional who takes a more frequent and active role in the day-to-day care of your loved one.

Whatever route you decide to take, you will likely feel some apprehension about allowing someone else to spend time with your child without you present — no matter how old your child is. Some anxiety is normal, especially in the beginning. But, as you adapt to the presence of another person, it’s important to remember:

1. Change Is Good

Your child can find happiness and a fresh perspective when they spend a few hours with someone else. Interacting with a new person, encountering different ideas and playing various games can be stimulating for them, as well as you.

2. Taking Care of Yourself Helps Your Family

By avoiding caregiver burnout, you keep yourself mentally sharp and ready to care for your family, which is particularly vital if you have others in your home who do not have cerebral palsy. When you a break from your responsibilities as a caregiver, you can pay better attention to your other family members and nurture relationships that might otherwise fall by the wayside.

finding caregiving help for those with cerebral palsy

Just because it’s important to get help doesn’t mean you’ll leave your loved one with the first person you find. Take time to find someone you trust, and make sure they understand how to babysit a child with cerebral palsy. Then, once you’ve hired someone, spend time with them outlining expectations and routines. Be clear about what you expect, and make sure you know what their expectations are too.

About Enabling Devices

Since our founding in 1978, Enabling Devices has been dedicated to providing high-quality, individualized service to our clients and their families. Our goal goes beyond providing products to perform a task or assist with a daily function. Our mission is to create products that allow our clients to unlock their full potential and experience joy and independence they didn’t think was possible.

shop products for cerebral palsy enabling devices

Enabling Devices is proud to serve clients with a variety of needs, including clients with cerebral palsy. We offer a wide range of products to provide accessibility and to address muscle development, sensory issues, fine motor skills, teach cause and effect, and much more.

For questions about our products or to place an order, contact us today at 800-832-8697.

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
Care.com

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!