Let Go

All children seek to explore their surroundings and exert their independence. But for parents of children with Cerebral Palsy, letting a child physically and emotionally take control can be an intimidating – but ultimately rewarding – experience.

Letting your child take the reins

When a child depends on his or her parents for everything, from special education planning to therapy appointments; from activities and interests to feeding and hygiene, it can be a challenge for parents to let go and let their child take the reins.

This is something that is understandable; parents of children with disabilities are accustomed to being the center of their child’s world. Taking steps in a forward direction is a part of natural human development; it represents emotional growth, social experience, intellectual advancement, and physical gain that children are hard-wired for.

A child having Cerebral Palsy does not diminish this need. In some cases, the presence of a disability may intensify the need for independence and autonomy. Rest assured, there will come a time when a child makes a move – physically or symbolically – away from his or her parents.

If parents set aside, for a moment, the knots forming in their stomachs, they will realize that there is an immense silver lining on the horizon. When a child wishes to push back their own limits, there’s an opportunity for them to feel empowered, deepen their ties to peers, and have fun. It opens up the world beyond the four walls at home, the school, the therapist’s office and the collection of family members and caregivers that, at times, feel claustrophobic.

Whether it’s expressing an interest in joining a new T-ball team or moving into a college dorm, big moves serve as a touchstone to a child’s future endeavors. A parent’s reservations about a child getting involved in pursuits, even if there’s a remote possibility of injury, doesn’t have to be at odds with a child’s desire to achieve independence – a balance does exist.

Getting past apprehension

When a child is able-bodied, parents are likely to support a son or daughter’s desire to get involved in sports or recreational activities. Later on, as a child grows up, parents typically tearfully accept that children will go onto a job or college, and leave home. But when a child has disabilities, parents wonder if their child’s physical, emotional and health needs can be met in the same way they are at home. This is a valid and practical concern for a parent to have.

During these times, it’s best to remember that expressing an interest in physical pursuits, even with physical impairment, is a positive development. It shows that he or she is thinking about what they enjoy; it’s an indicator that a child is capable of and has a desire to be social, and is willing to pursue those things that he or she will find rewarding without prompting.

Like many issues that crop up when a child has Cerebral Palsy, letting a child take the reins is about accommodation and compensation. When a child begins expressing interests – be it sports or art or something entirely different – the act of fostering that interest can be a powerful motivation for child-led activities.

If a child would like to play soccer, and he or she can be accommodated in a neighborhood league, the act of playing the game is a step on the path of independence. Participation in the sport gives the child the gift of inclusion and control.

Here are some ideas that will allow children to pursue autonomy to the best of their ability and allow parents to cope, while making sure that ties that keep families together don’t become the kind that bind.

1. Encourage safe exploration early

Once parents receive a Cerebral Palsy diagnosis, they are likely to have several questions about their child’s physical and developmental abilities. Once a child begins the process of physical and occupational therapy, a child’s abilities should be more apparent. This is a good time to begin thinking about activities they can take part in individually or in groups. Participation in activities that other children take part can prevent a child with disabilities from feeling isolated. And with the number of adapted activities in sports, arts, hobbies and interests that are available to young people, there’s no reason a child’s independent streak shouldn’t be encouraged.

2. Listen, and ask that a child listens, too

As a child begins to exert his or her independence, he or she will likely begin asking about activities that don’t include a parent. Listen to the child’s point of view. A parent may experience heartburn over a child’s desire to go to summer camp, and though a parent may not allow a child to take to a cabin in the woods just yet, it’s vital to understand the child’s motivation for inquiry. Parents should then ask a child to listen to their point of view. There are often good reasons for a parent to say no; perhaps a child’s health is not entirely in order at the time they ask. It’s also important to give a child hope; what he or she is not mature enough to handle this year might not be out of the question next year. Common ground, when both sides team up on the dilemma, can be found.

3. Look for ways to enhance autonomy

It’s natural for a child to want to take care of matters on their own. From day-to-day activities to avocations and pastimes, children have an innate desire to explore on their own. Cerebral Palsy has no effect on that built-in desire. Parents should see this phenomenon in a positive light. See if a child can participate in activities alone or with friends, and encourage them to do so.

4. Don’t count your child out

From marathoners to professionals to soldiers, young people with Cerebral Palsy have been a source of infinite astonishment to their parents. Often times, parents are lulled into believing their child’s life will be compromised by their condition, and because of this, they don’t encourage the pursuit of activities and ideas that at first glance seem out of reach. When this occurs, parents need to take another look. A child with Cerebral Palsy may achieve their goals in the same way as an able-bodied peer, or may take a different path to meet the same goal because of his or her condition. It’s impossible to know what the future holds – and that’s a good thing.

5. Do your homework

When a child inquires about a new activity, especially one that is physical in nature, do some research to find out how, or if, the sport is adapted. Is it a safe option for a child? Today, adapted sports have evolved in such a way that they encourage participation, and provide a high level of safety for young players so they too can take part in sports. Sometimes, parents need to visit the facility and witness a practice or a game to obtain a level of confidence that their child may excel in the program.

6. Seek advice and expertise

Most parents have an open dialog with members of their child’s therapeutic team. When the time comes to become more independent, ask a child’s physical therapist or physician what activities would be conducive to a child’s abilities. Or conversely, if a child asks about an activity, ask a professional how a child could take part in it in a safe and fun way. Parents generally are surprised – and thrilled – with the number of options available.

7. Try to see through a child’s eyes

Many children with disabilities live life through the prism that includes an army of therapists, educators, and caretakers who guide their progress and oversee their lives. It’s usually necessary that this state of affairs exists, but for a child, it’s not exactly empowering. It’s natural for a child to want to do something for his or herself; it should be expected that a child will not want to feel restrained. Parents should put themselves in their child’s shoes – what was the parent doing when they were their child’s age?

8. Find mutual ground

If a child suggests a scenario that is unsafe or impractical, a parent need not be afraid to say so. While a parent may understand a child’s desire to push the boundaries, it’s a parent’s job to set the tone. Parents should explain that the reason they’re saying no has nothing to do with a child’s disability – would a parent really want their able-bodied 12-year-old bungee jumping? It’s okay to say no to unreasonable demands as long as a parent is coming from a place of common sense, not fear. Work together to find mutual ground.

9. Seize the day

If a child is one of those rare birds who has trouble finding an interest, try introducing new hobbies into the family fold. Sometimes children may not be able to see how they can participate in an activity – and a parent never wants a situation where a child is sitting on the sidelines while everyone else is fully engaged. Introducing new activities is one way to tap into an avocation a child is interested in, even if he or she is not aware of it.

10. Celebrate a child’s goals

When a child is born, his or her parents wonder how their child’s lives will play out. Will the child be intelligent, creative, funny, or serious-minded? The answers to those questions can be found in the scope of a child’s experiences, and when that the child has disabilities, parents play a prominent role in opening up a world of possibilities. It’s okay for parents to be scared or concerned. But the reward in allowing a child to take the reins is that he or she gets wings. That’s enough to encourage a child to take flight

Helpful Resources

Some parents find it helpful to reference growth and development charts to ascertain their child’s level of achievement and to seek opportunities for advancement – even if modified, accommodated or adapted measures are deployed.

Helpful resources include:

Maslow’s Hierarchy of Needs.

Developmental milestones, Centers for Disease Control and Prevention

Child development.

Child development stages.

Language development in children

Social-emotional development

Adolescent stages of development

Self-esteem and positive self-image