Recently a grandparent of an 8-year old boy with CP asked me for ideas about how to help motivate her grandson. She said he is a happy child, but she is concerned that he is becoming a master at getting people to do things for him rather than working on developing skills himself. She believes he has learned to “work the system,” by taking advantage of people who “just want to make him happy”, but who do not necessarily encourage him to work to attain the skills within his reach. She wondered if I have any tips to encourage him take more responsibility for himself.

Her concerns echo those of many caregivers and are something we have experienced with our daughter Maya. In fact, assessing and addressing issues related to motivation is a common issue for children with disabilities. Parents of very young children may feel particularly confused because they are unsure of their child’s potential. Finding a balance between providing the right amount of support to encourage the child to attain new skills without pushing the child so far that he becomes frustrated, is confusing and often fraught with emotion.

Some parents feel guilty allowing their child to struggle because they understandably believe that having a disability is enough of a struggle for their child. However, offering help when help may not be needed can lead to longer term problems where the child becomes discouraged from setting and meeting his own goals. The flip side of this is if a child is too frustrated and does not experience feeling successful, he may lose his motivation to try.

With these issues in mind, here are some of my ideas about motivation that may be helpful in establishing a pattern of healthy goal setting and attainment:

OWNERSHIP

Ownership is the key to being engaged in an activity. For the child, ownership means choosing an activity and caring about it. Even a non-verbal or pre-verbal child can often select between several options. Choice is the main ingredient to ownership. If a child isn’t interested in what they are doing, they aren’t likely to keep trying.

When I see that Maya is not engaged in an activity or hear her complain about being bored, I try to present her with alternative choices that address similar learning needs and that she also enjoys. When I started actively using this approach I could often hear Maya breathe a sigh of relief and she expressed gratitude for having the chance to make a different choice. Some activities do not have room for making changes, like standing, and in those cases I offer to pair the activity with something she enjoys like listening to music or playing cards.

MIX IT UP

Children with CP typically get so much therapy (OT, PT, speech, etc.) that the therapy itself can get stale, frustrating and eventually unproductive. Having a wide range of possibilities to vary over time can be helpful.

For Maya, we have moved toward offering her a range of activity-based approacheswith therapy intensives offered periodically. This allows her to remain encouraged and motivated to invest in her traditional therapy time and also to have a complete break from it as well. She needs to find joy in moving, otherwise she feels like we are constantly drilling her and focusing on what she can’t do with her body. Years of unceasing therapy can cause children to wonder if there is something wrong with them that they and others cannot accept. We have arranged Maya’s schedule to include activities she enjoys like yoga, swimming and therapeutic riding. These activities are fun for her and keep her moving, while offering her variety in her schedule to keep things exciting and fresh. When she has a break in her school schedule, we are likely to arrange an intensive therapy session, such as 3 vision therapy sessions in 1 week.

FIND OUT WHAT THE CHILD ENJOYS

All children, and adults too, learn more easily when they are enjoying what they are doing. Often, though, for children with CP, learning skills are presented in a dry and repetitive way. It is no wonder that they lose interest.

When Maya was a toddler a developmental pediatrician suggested that we pay attention and support at least one thing Maya enjoys doing. For her it was listening to music. His suggestion was a great one. By focusing on what she finds pleasurable we try to pair some of her learning goals with what she likes to do. She can be having such a good time that she doesn’t even notice that she is learning!

In addition, we have found that when she becomes interested, or even passionate about something, it seems to kick start her motivation in other activities. As an example, when Maya was six years old she became very excited about playing cards. She has a vision impairment and it’s pretty difficult for her to manipulate things with her hands. But she was determined. It began very naturally with her just moving cards around on the floor and then slowly trying to pick them up one at a time. Then she started studying different aspects of the cards and she worked to decipher them from one another. She practiced constantly and as she developed new skills she became motivated to continue and play more difficult games. One thing led to another and now playing cards is one of her favorite things, but it also led to interest in board games and solving puzzles, something I never thought would be possible for her.

HAND OVER HAND IS NOT HELPFUL

When therapy is “done” to a child (like a car mechanic fixing a part) it is ineffective. The literature on brain plasticity shows conclusively that initiation by the individual is a key ingredient for learning, for change.It is important for children with CP to find ways to discover on their own. Even very little discoveries can be helpful.

SET GOALS

I have found great value in tailoring Maya’s activity schedule to specific goals. Having these goals in mind helps us target how she should spend her time, in therapy and in other areas of her life. As she has gotten older she has become increasingly involved in setting her own goals. It has been useful to prioritize her goals in terms of what she needs, what she likes and when it is appropriate to focus on some things and leave other things for later.

For instance, this year we have prioritized improving her vision. It became clear to us that Maya’s academic progress was being impeded by vision problems. She has attended vision therapy, with periodic intensives, to get a better handle on reading and distinguishing words.

Last year Maya said she wanted to work on dressing herself. I set up a series of OT intensives while she was on her school break. She had her own “homework” to do regarding these goals and she took her assignments seriously.

One important aspect of setting goals is to make the goals achievable. Some tasks may need to be broken down into tiny steps so that the child experiences success. Without a feeling of accomplishment no one wants to move forward.

MAKE A SCHEDULE

It is important for the child and the caregivers to make a schedule for rehabilitation activities. Because children with CP often have so many areas in need of attention, it would be conceivable to do therapy all day every day.  However, that can negatively impact on the child’s and the family’s quality of life. Everyone needs a break.

When I think Maya (or I) am getting weighed down with too much therapy I ask myself “What is this or that rehabilitative work adding to Maya’s life?” We try to arrange Mays’s rehabilitation work with an equal balance of just plain fun and relaxation time. As Maya has gotten older we actively include her in developing and knowing her schedule. This makes her a part of the process and gives her a sense of ownership over her time.

ENLIST OTHERS

We have found that sometimes other people (not her parents) can motivate Maya in a way that we can’t. It can be natural, on occasion, for a child to pay more attention to a therapist or doctor than to a parent – even when the professional says the same thing that the parent said. I have found that sometimes I ask an OT or PT (or even a peer) to encourage Maya or redirect her because my words don’t seem to be getting through to her.

All in all, it is hard to find the right balance between encouraging, cajoling, insisting and bribing the child with CP to be motivated to work to decrease their limitations. Determining where to push and where to back off isn’t easy and may change over time Also, the range of motivation for children is enormous; some children are more resigned to their status quo than others.  This is true of children without disabilities too. Each of us has a different personality and character and we ultimately have to embrace some of these qualities. Motivation itself varies with stress level, maturity, developmental age, the experience of success and the relationship between the child and the caregiver.

Jennifer is a parent who has struggled to identify and support her child’s motivation,

“Our 14-year old son has truly been difficult to motivate. Despite our best efforts and for reasons we may never understand, maybe he tried and failed too many times, the expectations were too high, the tasks were too difficult, or the medications wore him out, we have learned to give him a break and give ourselves a break. We take time to reset, renew and meet him where he is at rather than where we know his capabilities lie. Sometimes this is the best we can do.”

It’s not easy to let go of possibilities if you believe your child’s potential is unmet. Each parent has to be comfortable with the decisions he or she makes in deciding when to push and when to pull back. One tool I have found helpful in building balance into our daily life is the F-words. The F-words framework was deigned to help families who have children with disabilities approach their child’s development holistically.

The F-words include the following areas of focus:

  1. Function
  2. Family
  3. Fitness
  4. Fun
  5. Friends
  6. Future

You can read more about the F-words on the CanChild website: (https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability

Using the F-words doesn’t have to be a labor-intensive exercise. Over the years I have naturally incorporated them into a mental checklist. Whenever I feel overwhelmed or just wonder how we are doing as a family, I self-assess whether I think we may be neglecting one or more of these areas. The part that can be difficult is adjusting schedules to make room for what you may be lacking.

Establishing a routine for checking in with yourself and your family can help you master the art of knowing when it’s time to shift your energy around and also feel confident in doing so. Every time I have made an adjustment to reallocate our time and energy to honor one of these areas it has strengthened our family and sometimes changed our perspective and approach to raising our daughter.