Living the Chai Life

Strategies for Coping with the Social and Emotional Challenges of Pediatric Illness

Step One in Parenting: Take the Time to Care for You!

6 Ways To Take Care of Yourself When Parenting a Sick Child

Finding enjoyable outlets -- like Chai Lifeline's Family Camp Adventure-- is one way that parents can refresh their minds and bodies.

From the moment you wake up until the time you rest your head upon your pillow at night, your day is filled with the responsibilities of caring for your sick kid (or sick children!), and their brothers and sisters. Treatment, therapy, medical appointments, or school issues, not to mention the day to day necessities of taking care of a home and making a living. As you haul that last load of laundry up the stairs or fall into bed at night, you find yourself wondering, “When is it time for ME?”

That’s more than the question of the hour. For parents, and especially parents of children who have illnesses or special needs, taking time for oneself is critically important. And while it may seem to go against your nature, putting yourself first at times can be the best thing you can do for your child.

As a parent, you are your child’s role model.  You set the example for your children and you set the tone in the home.  If you are calm, if you are coping, you model that behavior for your family.

I’m not forgetting the Catch-22 of parenting a sick child. The more extensive the health and welfare needs of your children, the more time they will need. No matter what we do, there are only 24 hours in a day. So how can you carve some precious time for ourselves?

Be aware.

The first step is recognizing that you need a break. A recent kidshealth.org article pointed out that none of us are superhuman. While we may be able to leap tall buildings in a single bound, none of us can do that while simultaneously sitting at a child’s bedside, preparing meals, and schlepping to the doctor. No one can do it all. And even the most fuel-efficient cars need gas (or recharging!) sometimes.

Accept that accepting help is a sign of strength.

Very few of us like appearing of feeling weak. So remember: asking for help and accepting assistance is a sign of strength. Remember the “It takes a village to raise a child” line? It’s true. And the larger your village, the better off your family will be.

Find support.

Look around. Who can help and when can that those people take over for a bit? It might be a spouse, siblings, parents, friends, or community resources, but there is usually at least one person who can run errands, babysit, drive a sibling to dance lessons…do something. Yes, it means giving up some control. And let’s face it, not everyone will do it as well as you. But if it gives you some breathing room, your children will be able to manage one more pizza or pasta supper.

Find something to do that will quiet your mind and rejuvenate your spirit.

Go to the movies. Lock yourself in a room and read for 20 minutes. Take everyone’s advice and exercise. Try yoga, walking, or cycling. Go out with your spouse for a leisurely meal. Take a long bath. Everyone will offer you advice – and lots of clichés. The trick is to find what works for you. Taking time for yourself means disengaging from the constant pressure, and only you can find the solution that works.

Stay healthy.

This is a truism that is really true. Non-stop caregiving can wear you down emotionally and physically. So eat right, exercise (even if that means just taking a short walk after dinner), and try to get enough rest. Give up late night TV and turn off your computer in favor of sleeping.

Don’t try for perfection.

British pediatrician and psychoanalyst Donald Winnicott coined the phrase “the good enough mother” to describe the triumphs of ordinary parenting: giving children love, structure, encouragement, and confidence. Even if we could be perfect, it wouldn’t be an optimal way to parent. Our children need to see that we take care of ourselves or they risk confusing continual self-sacrifice with love for them and self-love.


5 Steps to Take To Nudge Your Teen With Chronic Illness to Take Responsibility For Her Health

5 Steps to Take To Nudge Your Teen With Chronic Illness to Take Responsibility For Her Health

Adolescence is a time when parents of teens with chronic illnesses or medical challenges may help your teen with chronic illness become independent and treatment-compliantwant to tear their hair out.

Adolescence is the period where teens need to psychologically move away from their parents and become more independent. Many times, teens will push limits to see how far they can go.

It is also the time when many teenagers with chronic illness want to throw in the towel.  They are tired of being different, of missing opportunities to be with friends because of because of medications, appointments, treatments, or special needs, or of just not feeling well. They are tired of watching what they do or eat, of knowing one wrong move could make them sicker or land them in the hospital.

In short, just when you need them to understand the importance of complying with medical routines, they may be ready to check out.

As a parent, you know that giving up (either them or you) is not an option. So how do you get them to get with the program and take responsibility for their health?

Step 1: Meet them where they are.

We all know that teenagers tend to do what they want.  Nagging, or trying to convince them to do something they don’t want to do, rarely work.  Begin the discussion instead by asking about their long term goals and talking about the steps they’ll need to achieve them.

Step 2: Set realistic expectations.

Don’t expect huge changes overnight.  Set small goals for your teen to accomplish.  The smaller the goal, the more likely it will be achieved, the greater the accomplishment and the stronger the will to continue on the road.

Step 3: Support the move towards change.

Make sure that the environment supports the changes that they are trying to make.  For example, if your child is trying to stay on top of her medication schedule, suggest setting an alarm on her phone as a reminder or leave the bottle out on the breakfast table.  Whenever possible, make sure that whatever is needed for success is easily accessible.

Step 4: Look for outside supports.

Managing your teen’s chronic illness is a team effort.  Look to her health care providers for ideas on how to improve and motivate her.  Many teens find that connecting with peers in similar situations is helpful. Many illness-centered groups, for example StupidCancer.com, or sites dedicated to teenagers like teenshealth.org or Bandaids & Blackboards for Teens have online communities that teens can join.

Step 5: Keep the encouragement coming!

Don’t nag! It’s counterproductive; eventually your teen will tune you out. Use positive reinforcement. Let your teenager know that you can see the changes and how proud you are. That may be all the motivation she needs. Every small change is a step toward continued health, so let her know you’ve noticed!

Does Your Child Qualify for SSI Benefits?


Does Your Child Qualify for SSI Benefits?

We welcome this contribution from Deanna Power of Social Security Disability Help. Please note that we cannot answer any questions about specific situations. Please address all questions about eligibility or how to apply to help@disability-benefits-help.org.

It is almost a law of nature that a child’s illness impacts a family’s income. Medical bills, time off from work, extra housekeeping or childcare needs add up quickly. SSI (Supplemental Security Income), a program administered by the Social Security Administration (SSA) provides some relief for families through monthly financial assistance to parents of children with life-threatening or severe chronic illnesses.

SSI offers financial relief to families living with serious pediatric illness.
SSI offers financial relief to families living with serious pediatric illness.

Do you qualify?

For your child to qualify for disability benefits, he or she will need to not only be disabled, but your family will need to meet income level thresholds. If your household income is too high, your child will be ineligible for SSI benefits.

The process of determining if your child meets the financial qualification for SSI is referred to by the SSA as “deeming.”  The SSA will consider some of your income and resources when determining if your child meets the financial requirements to receive SSDI benefits, but not everything. If you have other children or a spouse, your income threshold will be higher.

What are the medical requirements for SSDI for Children?

The SSA’s definition of “disability” for children states that children must have a mental or physical condition that seriously limits their activities, has lasted or will last for at least 12 months, or is expected to significantly shorten the child’s lifespan so that s/he will not survive past childhood.  In order to determine if the mental or physical condition meets the requirements of a disability, the SSA uses a list of impairments commonly referred to as the Blue Book.

The “Blue Book” lists the medical criteria for evaluating a mental or physical impairment to determine if the severity is a disability for the child.  In addition to the Blue Book, the SSA maintains a Compassionate Allowance list with conditions that are considered so severe they almost always meet the medical requirements for a disability. Compassionate Allowances are also approved much quicker than typical applications, so your child could receive benefits much faster.

Evidence used to prove that your child meets the criteria in the Blue Book includes medical reports, medical tests, information from the child’s school, reports by caregivers or social workers, consultative examinations ordered by the SSA, and information provided by parents or other sources about the child’s daily activities, symptoms, and functional limitations.

 Examples of life-threatening childhood illnesses in the SSA’s Blue Book.

Many of the illnesses contained in the Blue Book can be considered life threatening.  Each condition has specific criteria that must be met in order to consider the condition a disability.

Childhood cancers: Cancer is addressed in Sections 113.00 (solid tumors) and 107.00 (hematological disorders).

Heart transplants: If your child has a serious heart condition and requires a heart transplant, the SSA will consider your child medically disabled for at least 12 months following the procedure. After 12 months, the SSA will reevaluate your child to determine if he or she is still medically eligible for benefits.

Low birth weight: If your child is born prematurely, he or she could receive benefits. The SSA has a chart depicting how much your child must way at his or her time of birth to qualify.

Additional categories include musculoskeletal system disorders; special senses and speech; and disorders involving the respiratory, cardiovascular, digestive, genitourinary, dermatology, endocrine, neurological, and immune system disorders. Information about congenital disorders that affect multiple body systems and mental disorders are also available.

 How do I apply for SSI for my child?

The SSA’s website provides detailed steps for how to apply for SSI for your child.  You can complete the Child Disability Report online; however, to complete an SSI application for your child, you must schedule an appointment with your local SSA office by calling 1-800-772-1213.


Editor’s Note: Social Security Disability Help(DisabilityBenefitsCenter.org) is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests (the free disability evaluation tool on the site).




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