Growing Up With Chronic Illness: Stages and Changes


Kids seem to change at lightning speed…sometimes it’s hard to grasp how fast they move from one stage of development to the next.  It’s tough to keep up when it’s happening to kids without health challenges, so what do you look for if your kid does?  Check out these words of supportive wisdom from Awesome Licensed Marriage and Family Therapist Barbara Calvi:

How a child copes with a chronic illness, long term medical care, or repeated hospitalizations depends on their personality, the specific illness, and family support; all play a part in how well a child copes.  But there’s another important factor:  the child’s developmental stage.  Below is a list of the development stages, along with some ways you can help a child with health challenges navigate them more successfully:

Infant/Toddler:  This stage is about a child developing his/her overall sense of security and trust.  Typically, this happens when the parent is consistently available to meet the child’s physical and emotional needs (diapering when needed, feeding when hungry, soothing and rocking when upset, etc.)  But when a child is ill and experiencing physical pain, separation from parents, and restriction of movement, creating trust and security may be more challenging.

To help your child develop that sense of security, be present in the hospital as much as possible, particularly for painful or confusing procedures.  Also hold, rock, sooth, and interact with your baby as much as you can.  Physical contact with you and the sound of your voice is key; your child is neurologically programmed to look for those things in order to feel safe.  And please, don’t beat yourself up if you can’t be there for every single procedure!  If you’re there for most of them, your child will still be able to build a solid, trusting relationship with you… and the medical staff who care for them!

Preschoolers:  This is when children develop their first sense of independence.  This can be a real challenge when your child is confined to a hospital room with a schedule of pokes and pills over which they have no control.  The trick here is to allow your child to make as many of their own choices as possible.  For example, which medicine do they want to take first?  Do they want to sit in your lap or lie on a bed when they take it?  What color Band-Aid do they want afterwards?  Do they want to watch TV or play a game afterwards?  An appropriate amount of control over their situation will help them feel more secure and allow them to build trust with those who care for them.

Caution:  No parenting by committee!  Avoid ending statements with, “OK” (e.g.:  We’re going to draw your blood now, ok?)  This makes it sound like they have the option of saying “no” when they don’t.   In other words, if the child doesn’t have a choice, don’t offer one!  You’ll just get a big “NO”, cause confusion, and potentially make your child feel even more helpless.

Early School-Aged Children:  This stage is about mastery over their environment.  This can be especially challenging when they are confined by illness.  Children at this age have more capacity to understand that they’re ill.  So, talking about the illness can be empowering.  However, they may not get the logic quite right and may believe the illness is their fault (e.g., they told a fib, didn’t share a toy with a sibling, said a bad word, etc.)  Assure your child that the illness is not *anyone’s* fault and explain what’s happening to them in an age-appropriate way.  There are lots of books to read together to help them understand.   Watch for signs of depression or withdrawal so that you can address their concerns.

Wherever possible (and with your doctor’s ok!), it’s important to allow the child to have some say in treatment management.  Be sure to talk to your child’s doctors and nurses beforehandso that you can find empowering ways for them to become actively involved with their care.

Older School Aged Children:  This is typically when a child’s world expands beyond their home; school, afterschool activities, and playdates are how most kids learn socialization and boundaries.   But those opportunities can evaporate quickly for chronically ill children.  Wherever possible, allow your child the freedom of play.  Parents are often understandably apprehensive about letting a child with an illness engage in certain activities with other children and may reflexively feel it’s best to restrict them.  But this type of interaction is important to their sense of mastery of their environment and their independence!  So, whenever medically possible, allow them to engage in activities with others .

Adolescents:    Ahhh…the Teens.  This is when children are knocking on the door of adulthood and developing their own sense of indentity separate from their family.  Self-image is everything.  Imagine how difficult it is when the illness itself, treatment, or medication has in some way altered (even temporarily) an adolescent’s appearance.  It can be devastating for some and there is a risk of depression.  Be sure to talk to your child about this; watch for the open doors so that you can start the conversation.  (Even if they resist, you’ll send the message that you’re there to listen when they’re ready.) This is also the time when teens are beginning to individuate.  Parents can help by stepping back and allowing the teen to manage as much of their illness and treatment as possible.  If possible, allow for some controlled rebellion:  your teen might go through periods where they slack off on their medication, reject their restrictive diet, or rebel against some other aspect of their health care.  As long as the doctor agrees that for short periods of time nothing catastrophic will happen, I suggest parents bite their tongues, sit on their hands and give their teens as much independence as possible!

And finally, remember to get support for yourself as a parent.
  Find a therapist, a support group, or a spiritual guide to help you.  Remember that it is absolutely ok to do occasional things that bring you joy and you do NOT have to feel guilty that you’re experiencing happiness when your child is sick.  Find your form of stress relief so that you can be present and grounded for your child…whatever challenges you face


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