Partnership is the beginning of self-care.
Raising a tween can be a tricky road to tread. When your tween has a chronic illness however, the journey can begin to become more treacherous.
Tweens are at an age when they want to start affirming their autonomy and independence. While your child may still consistently seek your comfort, he may also attempt to take care of more things on his own.
By the time a child with a chronic illness reaches the tween years, most parents have a system for management firmly in place. That system however, in great part probably relies on the compliance of the child.
When children reach their tween years however, they begin to question the world around them. The influence of peer pressure becomes a powerful motivator. Many tweens feel awkward enough without the added attribute of dealing with a chronic illness.
The severity of a chronic illness affects the impact on the child. As children transition to tweenhood, kids with moderate to severe conditions can suffer from more than just their symptoms. Missing school during the middle school years for example, can take a much greater toll on a child than it did during the elementary school years. The impact is often experienced in many realms including academics. Most middle schools offer students a range of afterschool sports, club and activities in which to participate. Chronically ill children miss out on avenues to pursue their growing interests, as well as the camaraderie of connecting with like-minded peers when they are unable to attend school.
It can often be difficult to strike the balance between allowing your tween to manage more of his illness on his own and ensuring that he is properly supervised in the process. Transitioning to self-management is an important task. By the time your child reaches his teens, he should be taking more control. The goal is to synchronize self-management with his developing cognitive awareness and ability to take on more independence in his activities of daily living.
Much of the challenge is in identifying a schedule that best suits the individual child. There is often a wide gap within each tween in regards to maturity level. One tween for example, may be excelling in academics but lag behind socially. It is not uncommon for kids with a chronic illness to be more reliant on their parents than other same-aged tweens. This reliance is an important coping skill for the challenges synonymous with chronic illness. As the child matures however, it is important that he learn to become more self-reliant. At some point in the future it is possible that his survival may depend on this ability.
Negotiating the push and pull that often characterizes the battle between tween and parent can be difficult. What follows are some quick tips to encourage the chronically ill tween’s smooth transition to the self-management of symptoms and required healthcare protocols.
1.) Go about it gradually. All good plans start with an interactive conversation. Talk with your tween about becoming more aware and involved in his treatment. Figure out together some ways he can begin to take more responsibility. Encourage him to ask his doctor questions at appointments. Toward this end, while a parent should be present during these discussions, take a step back and encourage your child to do the talking instead of answering for him.
2.) The preparation process for self-management begins with partnership. If your child’s illness requires medications or regular treatment work talk her through the procedure. You can for example, encourage her to become familiar with names and doses of medications she takes. Discuss how each medication helps her. Encourage her to offer feedback regarding any side effects or discomfort she may be experiencing.
3.) Set self-management goals. Discuss with him a plan regarding how/when he should take over more self-care tasks. Develop reasonable time frames. Some treatments for example may require several years of working together before he is old enough to administer the protocols himself. The main goal is to encourage and empower him to step-up and begin to become more involved with caring for himself, instead of simply following your directions.
4.) Self-management initially requires strict supervision. Your child is still a tween. Although she may have a mature approach to managing her illness, she still needs you to closely monitor her care. As she transitions to her teen years, you may feel more comfortable expecting her to take more responsibility. Your tween is still a child, as such, be wary not to expect too much too soon.
5.) Engage your healthcare providers in the transition process. It should go without saying that you need to check in with your child’s treaters before you make any changes in how his care is to be administered. Talk with your child’s treaters about your self-management transition plan. Ask them to partner with you to transition your tween. They are a good source for advice about how to create the most appropriate plan.
Tweens with chronic illness face many atypical challenges. Tweens faced with compromising health conditions often feel more awkward, annoyed, and even ashamed in comparison to their ‘healthy’ peers. When these tweens are encouraged to engage in a self-management transition plan, they are offered a unique opportunity to feel empowered.
For more on helping kids manage chronic pain: