Pacing Your Child’s Recovery: Part 2
Brought to you by CHYP’s Parenting Blog
August 23rd, 2021
By: Samantha Levy, PhD
Welcome to another installment of Backwards Parenting Your Child With Pain, “Pacing Your Child’s Recovery – Part 2.”
As usual with chronic pain, we have to do things backwards. When your child is recovering, you need to encourage him or her to re-engage slowly but surely, like the tortoise in “The Tortoise and the Hare” fable.
Last week’s post, “Pacing Your Child’s Recovery – Part 1,” discussed getting your child back to school.
But what’s the best way to you pace your child’s recovery while re-engaging at home and in other activities?
Don’t push your child to improve too quickly.
Often parents get SO excited when their child starts to improve that they expect her to resume all of the activities she did before the pain began. I usually jokingly tell my clients that their parents are “getting greedy.”
It may take time for your child to feel comfortable resuming activities. She may feel scared that she’ll relapse, that she’s out of the loop socially, that she’s less skilled at the activity now and others will judge her, and many other reasons that make it difficult to fully resume all activities. In addition, your child may become fatigued more easily than in the past.
Kids who recover and resume functioning slowly but steadily are less likely to relapse than those who are suddenly cured and go back all at once to all of their previous activities. Their fears will be dampened as they pace themselves, and if they recover slowly and steadily, there is more time to incorporate the skills they’ve learned along the way. Those skills may include breathing, mindfulness, using creative outlets such as writing or drawing, reaching out to a friend or family member to talk to, exercising, and so on.
It’s best to resume a past activity, like a sport, in an informal, fun way before going back to competitive play. Andrew was a 12-year-old star soccer player before he developed chronic leg pain. Before resuming team play, he spent weeks kicking the ball in the back yard with his brother and played one on one with a high school soccer player who came to condition him and play for fun.
Tony was a 10-year-old budding lacrosse player. He was very athletic until he ended up in a wheelchair from leg pain. Before resuming sports, he enjoyed getting back into shape by jumping on the trampoline casually with his siblings in the back yard.
Let your child take the lead in resuming activities.
While encouraging your child to pace herself and resume activities gradually is helpful for maintaining the gains made, you should also let her take the lead in choosing which activities to resume first.
Many kids develop chronic pain because they’ve been going, going nonstop and then crashed. Jake was a 15-year-old who was engaged in nonstop activities in school and out. He got headaches and then crashed—and didn’t get off the couch for three months before I met him.
He said he realized in retrospect that he had been “going around on a hamster wheel.” I told him, “Imagine you’re on a treadmill. The plug gets pulled and it suddenly stops. The faster you had been going, the harder you’re going to fall when the treadmill stops.”
Don’t expect your child to want to resume all of the same activities that she participated in before the pain. Remember, this is your child’s life, and you need to let go of any expectations you have of what your child will participate in or excel in. Let yourself be grateful that your child is doing something, anything…notice the baby steps.
Prioritize sitting outside in the sun over doing household chores.
Eventually, we want kids to resume all household responsibilities that they had before the pain started. At first, though, we have to prioritize.
It doesn’t feel as daunting if we set the initial goals small and attainable. For instance, if your child has been in bed 24/7, you need to start with just getting him out of bed for an hour and lying on the couch, or getting 15 minutes of sun each day. Then, we can gradually expect more, little by little.
Just getting out of bed is a helpful intervention because it encourages more interaction with family members, is energizing because it’s a change of scenery, promotes better sleep at night, requires movement, and is less of “sick” role behavior than being in bed. Sunshine has lots of physical and mental health benefits, too.
A next step can be something like requiring your child to get out of bed for one meal per day, even if he’s just eating on the couch. Then you can move on to expecting the meal to be at the table with everyone else in the family, and so on.
Jenny was a 13-year-old with fatigue, dizziness, and arm pain in her dominant hand. When she came to me, her parents were bringing all her meals to her in bed. Each morning, her mom propped up her pillows to the exact position that Jenny liked best. Her parents held a glass to her lips each time she wanted a drink. They helped her to the bathroom so she wouldn’t fall from dizziness.
Her parents were doing what they thought was the loving thing, but they were keeping her from getting well.
In stages, we had Mom stop propping the pillows and Jenny lift her own glass to her mouth (using a straw to make it easier). She held on to the walls to get to the bathroom and back by herself, until she got stronger and could trust her vestibular system enough not to need the walls anymore. We began requiring Jenny to spend some time each day out of her bed and to gradually come to the table for meals.
She eventually went from being bedbound to going back to school part-time. Her parents felt mean at first not helping her, but in the end, they realized that they were actually loving Jenny by increasing their expectations of her—slowly.
Most important, your child is very likely to worry that if he resumes all normal activities, you will think he is no longer in pain or suffering in any way.
Douglas had leg pain, a feeling of weakness, and dizziness. As he recovered, he worried that if he walked without his crutches, his parents would not understand that things were still really tough for him.
So, we had him wear brightly colored Kinesio tape, that did not impede his movement, as a reminder that he was still not fully well. As he got more and more comfortable with his recovery, he wore the Kinesio tape less and less until he no longer felt he needed it. His parents also intermittently gave him a hand signal that meant, “We know it’s tough for you, even though you look like you’re walking with ease.”
Often parents complain to me that their child is not improving. Then I point out all of the things that their child is currently doing that he didn’t do when he started out in treatment. They realize that they have been using their child’s complaints as a barometer of improvement, instead of looking at his progress in functioning.
If your child is not anywhere close to going back to his or her previous activities, keep taking the resumption of normal functioning in baby steps. And remember, if you ask for too much, it may backfire—with your child regressing more in functioning.
On the other hand, if you ask her to do nothing, she won’t improve. Finding the right balance is essential. Be patient in finding this balance. It will take some trial and error, but you will know you have found it when your child starts slowly—but surely—resuming normal functioning.
Samantha Levy, Ph.D. is a clinical psychologist who received her Ph.D. from Georgia State University in the Child and Family specialty track. During her clinical child internship at UCLA in the child track, she became involved with the Pediatric Pain Program (PPP). Subsequently, she obtained her postdoctoral training with the PPP. Depending upon the case, Dr. Levy works either with whole families, individual children/teens, or parents. She employs an array of psychological orientations (e.g. CBT, play therapy, mindfulness, meditation), to help the children/teens with their pain and any accompanying emotional issues. She helps the parents and patients understand the connections between the physical pain and emotional difficulties (mind/body connection). She teaches parenting skills and helps parents make plans to facilitate change in their children, such as in their difficult struggle to give their children the courage to begin functioning more fully in the world once again. Dr. Levy is open to conducting child, teen and parent support groups when there is interest. Dr. Levy is a member of CHYP’s Clinical Advisory Board.