Caregivers of Children

One thing that we at the International Foundation of CDKL5 Research are the proudest of is the fact that parents and caregivers of CDKL5 children created the organization. We understand that each child, situation, and family is different; but we have a great sense of understanding for what you are going through was a caregiver of a special needs child.

Work. Other Children. Significant others. Your health. Medicine. Bills. Managing the house. A social life. There are times when the ‘to do’ list is feels never ending!Though nearly a decade old, Caregiving in the U.S. 2009 – A Focused Look at Caregivers of Children, (from the National Alliance for Caregiving in collaboration with AARP and funded by MetLife Foundation) seems to be the most current and comprehensive study of specifically caregivers of children.

We know that many of you downplay how hard you work, but check out these stats:

  • Caregivers of children are twice as likely as the general adult population to say they are in fair/poor health (26% vs. 13%)
  • Six out of ten caregivers of children (60%) say their caregiving limits the amount of time they spend with other family and friends.
  • One in three of caregivers of children has sought financial assistance on behalf of the child (32%).
  • Physical strain from caregiving is more common among caregivers of children with special needs (64%) than it is among those caring for adults (55%).
  • Three out of four caregivers of children report making changes to their work situation. Those caring for a child are three times as likely as those caring for an adult to have had some of the more severe impacts on their employment situation: cutting hours or taking a less demanding job, giving up work entirely, and losing benefits. They are also more likely to have taken a leave of absence.
  • In particular, they are less likely to be in a low burden situation (38% vs. 48% caregivers of adults). One in five (21%) caregivers of children are in medium- burden situations and 39% are in high burden situations—not statistically different from the 31% of adult caregivers who are in such cases.
  • Seven in ten caregivers of children perceive themselves to be the primary caregiver (72%), including 44% who are sole caregivers and 28% who report that there are other unpaid caregivers but that they provide the most care to the child. Caregivers of children are more likely to be the primary unpaid caregiver than are caregivers of adults (53%).
  • You’ve heard it before but let it sink in this time.

You absolutely cannot pour from an empty cup


Take one minute right now. Take out a piece of paper or grab your phone and write for one full minute all the activities that make you smile and feel restored. Don’t allow your adult brain to come in and crap all over it! No ‘naps aren’t feasible in my schedule’ or ‘I haven’t done that in years!’. Just make a list and try ( that’s all we can do right?!) to do one a week. That’s all. I’m a fan of tapping! Its results are being recognized all over the world, and I would think it is very useful.

“Tapping provides relief from chronic pain, emotional problems, disorders, addictions, phobias, post-traumatic stress disorder, and physical diseases. While Tapping is newly set to revolutionize the field of health and wellness, the healing concepts that it’s based upon have been in practice in Eastern medicine for over 5,000 years. Like acupuncture and acupressure, Tapping is a set of techniques which utilize the body’s energy meridian points. You can stimulate these meridian points by tapping on them with your fingertips – literally tapping into your body’s own energy and healing power.” You can find this information and SO much more at The Tapping Solution.

Try it now with this initial sequence. Here’s how a basic Tapping sequence works:

  • Identify the problem you want to focus on. It can be general anxiety, or it can be a specific situation or issue which causes you to feel anxious.
  • Consider the problem or situation. How do you feel about it right now? Rate the intensity level of your anxiety, with zero being the lowest level of anxiety and ten being the highest.
  • Compose your set up statement. Your set up statement should acknowledge the problem you want to deal with, then follow it with an unconditional affirmation of yourself as a person.
  • “Even though I feel this anxiety, I deeply and completely accept myself.”
    “Even though I’m anxious about my interview, I deeply and completely accept myself.”
    “Even though I’m feeling this anxiety about my financial situation, I deeply and completely accept myself.”
    “Even though I panic when I think about ______, I deeply and completely accept myself. ”
    “Even though I’m worried about how to approach my boss, I deeply and completely accept myself.”
    “Even though I’m having trouble breathing, I deeply and completely accept myself.”
  • Perform the setup.
  • With four fingers on one hand, tap the Karate Chop point on your other hand. The Karate Chop point is on the outer edge of the hand, on the opposite side from the thumb.
  • Repeat the setup statement three times aloud, while simultaneously tapping the Karate Chop point. Now take a deep breath!
  • Get ready to begin tapping!

Tapping feel silly to you or struggling making a list?


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Whether you use bubble baths, working on the car, or tapping— make time for self-care! You will be a better you, parent, friend, spouse, community member, and, yes, even a better caregiver.