What are your best tips for kids with cerebral palsy? That's what I asked an amazing pediatric therapist in honor of National Cerebral Palsy Awareness Day, happening this Sunday March 25. Stacy M. Menz, based in the San Francisco Bay area, has worked with hundreds of kids with CP. She blogs at Starfish Therapies (a great blog, check it out!) and she's a columnist for PediaStaff. I know we all already have more than enough therapy to do with our kids (understatement alert!); what's genius about Stacy's suggestions is that they are basic lifestyle ideas you can easily incorporate into your days. And you're going to love the part where she suggests giving yourself and your kid breaks!
When I sat down to write this, I thought it would be a breeze. Boy, was I wrong. Each item seemed to morph into many items and then I’d realize I still forgot something that I really wanted to share. Writing this list, while thinking of all the children I have seen with CP over the years, made me really appreciate the differences in each child with CP I have met. I know every child with CP is different, but I have tried to make my top points applicable to all!
1. Avoid w-sitting. This is the number one things I tell almost all of my families. The topic of w-sitting tends to bring up a lot of controversy usually because parents have sat this way themselves and have not noticed any detrimental effects. Kids who have CP often sit this way because it provides them with a really stable base of support allowing them sit independently. However, that comes at a cost. W-sitting will also limit and hinder their ability to develop trunk strength, trunk rotation, hand preference and independent movement in and out of sitting. Tis position also encourages hamstring tightness, hip and femur alignment issues, and poor posture. Instead of w-sitting work with your therapists to find some alternatives ways to sit independently as well as work on other activities.
2. Give kids time to be kids. Kids with CP are often so scheduled with therapy appointments that they don’t have time to be a kid, goof off, and do the things other kids do. Give them unstructured play time with their peers or siblings or even with you. Let them guide the interaction and see where it will lead. The best part is that usually these unstructured moments are just as therapeutic as all the structured therapy. It provides them a great opportunity for them to work on integrating the skills they learn in therapy and generalizing it out into their day-to-day environment.
3. Maintain range of motion early. Maintaining range of motion at various joints in the body can be a challenge when a child has a diagnosis of CP, especially as they grow and get older. With each growth spurt their muscles can get a little tighter and they lose just a little bit more range. This is true for both kids who have low tone and kids who have high tone. Depending on the severity, decreased range of motion can affect your child’s ability to move, or even the ability to maintain your child’s hygiene. Start early and get into the habit of stretching your child or encouraging a multitude of positions. It’s a lot easier to maintain their range of motion than it is to get it back. Some areas to pay attention to are your child’s spine, hamstrings, ankles, hands, and hips.
4. Don't be afraid to take therapy vacations! Its very easy to get caught up in the more-is-better mindset, but at the same time giving your child a break every once in a while is good for them. It allows their bodies and brains a chance to take all of the skills and pieces of skills that they have been practicing over and over and bring it together in a way that ‘clicks’. In addition it gives their bodies time to rest a bit. Think about training for a race, taper days are included in the work out program so that your body can recover; well kids need some recovery time as well! I often find that after a child comes back from a vacation or a break they will move up to the next level of whatever skill they have been working on.
5. Know that tone and strength are different. Many kids with CP have altered muscle tone. This can be high tone, low tone or mixed tone (a combination of high and low). Low tone is a little easier to see the underlying weakness and therefore strengthening low tone muscles tends to make sense. High tone is a little more challenging because the muscles tend to be "turned on" and stiffer already, so strengthening seems counterintuitive. The reality is that under that high tone, the muscle is weak and by strengthening the muscles, it can help the child to regulate and have some control over their tone. Overall, strengthening muscles for kids with CP is important because the strength is what provides them the means to increase their function.
6. Core strengthening is important, too! All strengthening is important—however, the core is the foundation that allows kids to move and to function. The more stable they are in their core the more function they will be able to achieve. A strong core is able to react to changes in balance, sit up tall for increased attention, improve breathing, vocalization and eating, enhances fine motor control, and is involved in almost any activity or function that you want your child to master.
7. Promote independence. Encouraging your child’s mobility and providing them the resources to have independent mobility can be a fine line to walk. Many kids with CP are reliant on their parents, caregivers and aides for mobility and/or interaction. Providing your child a means of independent exploration and mobility allows them to explore their environment, interact with their peers, promote self reliance, and enhances cognitive skills. Providing them a means for independent mobility can happen in many ways. It can be power mobility or an assistive device, or it can be teaching them self directed behavior so that they don’t need to rely on you for step by step cues on what to do next. Just because you provide them with assistive devices or wheelchairs doesn’t mean that you have to stop working on progressing their mobility without the assistive device. In fact, a lot of times gaining independent movement in an assistive device can help foster the desire to move and thereby increase their self-motivation. In addition, let your child try tasks independently even if its messy (like feeding) they feel a sense of accomplishment when they get to do things on their own.
8. Mix harder stuff with easier stuff. Think about when you are learning a new skill, how often do you have to practice it until you master it? Quite a bit, I’m sure. During that time required for practice, it’s energy-consuming both physically and mentally to learn the task. For kids with CP, every new skill requires exponentially more practice and more energy than when we learn something new. So what may seem simple to us—such as walking across a room, or eating a meal—can be a workout for a child with CP. But with practice and time, these challenging tasks will get easier. Don’t give up when something is really difficult; try mixing it in on a regular basis with easier activities to prevent frustration for both you and your child. For example, if I'm working on walking with a kiddo and it's hard for them, but they are good at standing or crawling I'll have them practice walking for a bit and then stand at their destination to read a book or play with a toy or use the iPad and then if they want they can crawl back to the 'starting line' where we started practicing walking and try again. This will provide them with practice of a challenging task and give them a rest (mentally and/or physically) while successfully completing another task.
9. Encourage your kid to be active every day. Kids are meant to be active and being active promotes a healthy lifestyle. However, many kids with CP have the tendency to have poor fitness as a result of their challenges with movement. Encourage this by finding ways to get them active daily. It doesn’t have to be structured: Spend time at the park, go in the water with them, make up games at home, or see what activities your community offers. Regardless of your child’s ability to move, there are ways they can be active to promote their health and, most importantly, have FUN!