I prepared a series of questions about physical therapy and cerebral palsy for our physical therapist, Mary Jones, who specializes in pediatrics. Ms. Jones has been an incredible collaborator, resource, and advocate for using what works for Maya and our family. I feel deeply grateful to have found someone who brings such intelligence, humility and passion to her work. I hope you find her input and insight helpful wherever you are in your journey with your child:
What kind of PT do you practice: I am a pediatric PT. I don’t swear by any one treatment type (NDT etc) but try to incorporate pieces of different theories that I find effective and that make sense to me.
What guides your determination of individual goals for each child: I try to spend a lot of time talking to kids and parents when I’m doing an evaluation and also while we’re working together. My goals are a combination of what families bring to me as their own goals and what I see as reasonable ‘next steps’ for the child. Sometimes a family will have specific things that would make their life and/or the child’s life a lot easier or fulfilling that I wouldn’t have thought of, so it’s important to hear what is meaningful to them. Some families look surprised when I ask them what their goals are for their child, because they see it as something a professional should decide – “I don’t know what to expect, you’re the PT”. I try to make it a team approach and have to coax out their vision for their child. I think that some parents need encouragement to voice their dreams for their child because they are afraid of being told that those dreams aren’t possible. And while sometimes those things may not be realistic in the framework of our goals (typically written for the next 3-6 months, or long term goals for 12 months), we can usually work together to find stepping stones towards their dreams that are realistic and that everyone can feel on board with. Families play an important role in therapy, so if goals aren’t meaningful to them they are not likely to work on them at home.
Do you believe parents can help support the work you do during therapy visits: YES!! Kids are typically in outpatient therapy for 1-2 hours per week. While some kids spend a decent chunk of time in school or daycare, they still spend an overwhelming majority of time with their family. 1 hour per week is not going to make a huge difference in a child’s skills. It’s what is carried over at home and integrated into daily life that they are able to practice and learn from. My job is to try a million things from my bag of tricks and figure out which few strategies work best for a child, and then teach families how to implement those strategies. It always makes me smile when a family asks “what can we do at home this week?” (although I usually try to be giving ideas throughout a session…but we can’t all be perfect all the time!!)
What function or supportive role does PT provide for kids with CP? This varies depending on the child, but in general terms I feel our role is to help optimize gross motor potential and to assist with appropriate equipment if necessary.
Do you approach kids who have had a loss of skill sets differently from those that may never have had them (TBI vs. CP)? Not consciously. I have found that it is difficult to group kids on diagnosis alone because each child is so different, so I don’t feel that my approach is specific based on their mechanism of injury. Some children work well with focusing on ‘building block skills’ and really breaking larger tasks into their component pieces to learn them, while others do better focusing on a complete functional task. And a lot of kids fall somewhere in between with a little bit of work on each end of the spectrum.
What is your belief about the role PT plays in helping children initiate new movements or skill sets? How do you determine when a child is ready to pursue new skills? I believe PTs can use their knowledge of movement to guide and facilitate new patterns and skills. I think that we can often use our hands to introduce a new movement to a child and then use activities to help them initiate that movement on their own. I think that we can help show kids a more balanced way of movement that may be more difficult for those with neurological impairments, but if they are able to grasp those patterns they’ll have a stronger foundation for higher level skills. And if the ‘proper way’ of moving isn’t possible for their bodies, then it is our job to help them figure out the most functional movement that they can. I’d like to say there was a scientifically proven method that I use to figure out when someone is ready for a new set of skills, but there isn’t!! Sometimes we move on when a child has a solid grasp on the skills that we’re working on and it time to move up, sometimes I see a child attempt something that we haven’t tried before and it’s my signal that they’re ready for help with something new, and sometimes I feel like both the child and I get stuck in a rut and it’s just time to throw a curveball into the mix and see what happens. Sometimes we strike out, but sometimes we hit on something wonderful!!
What advice do you have for parents who are struggling between interventions with opposing philosophies, one of which is PT? First off, my advice is that they are the parent and that they have to do what feels best to them and what they feel is right for their child. Second, I’m a pretty strong believer in an open-minded approach, so there aren’t a lot of things that I’m outright opposed to. If they’re running into a big conflict, is it possible that they are not with the right practitioner but could still get benefit from that intervention if it was with someone else who is more open minded? Are their practitioners willing to talk with one another? I think there is common ground to be found most times if people are willing to hear where the other side is truly coming from. The answer may be that these people aren’t interested in collaborating, but it can’t hurt to ask. And if they aren’t, then again my question would be is there someone else who would be?
What are the most noticeable improvements you have seen with kids who have CP? Kids are generally motivated to move, and I’ve seen some pretty incredible ways children with CP have learned to move and interact with their environment when they’ve been given sufficient opportunity.
What do you feel the limitations and/or negative responses of PT? Burnout. Especially for children with complex needs who are in therapy for long periods. It can be hard to keep things motivating at times and kids are smart – they know that you make them work hard! I’d like to join this with another question of yours: What misconceptions have you found that people have about PT? I think that this sometimes pairs with the other question and can lead to a vicious cycle. Some people believe that PTs can ‘fix’ whatever is going on with their child, and this is often not the case. We cannot take away an underlying genetic or neurological impairment. Our goal is to help kids function to their max despite it. There will often be limitations to what we are able to do, however, and this can be disappointing to parents, kids and also the therapists themselves. Paired with this is the notion that some people have that because their child has an impairment that they need to be in therapy every week for their whole life. I disagree with this idea. I think that there are windows of time when children’s bodies and minds are primed to work on new skills and that is the time that we need to be involved. There are also some children who may be at risk for regression of skills and need us to help slow or stop the backslide. But there are also windows of time when things are just holding steady and kids aren’t ready or able to work on whatever may be expected next…and this is ok!!! Sometimes kids need to be kids and families need to be families without a million appointments. I think its ok for kids to have a break from services and either be followed consultatively or just having families call back when they feel like new needs have arisen.
What advice do you have for parents on providing their input on selecting equipment? Speak up! You are going to be the one using it! If it looks too complex, say so. If it’s too big to fit in your living room, say so. If it doesn’t work for your space and for your lifestyle, you probably aren’t going to end up using it and because of the way reimbursement works, you are probably going to be stuck with it for quite a few years. There are no stupid questions when it comes to ordering equipment, so think out loud when meeting with a vendor. If you feel compelled, do your own research. Realize that not everything you find may be funded in your state or based on your insurance, but it doesn’t hurt to ask.
What do you enjoy most about your profession? I feel like I become part of many of my patient’s families. I don’t think that there are many jobs where that happens as much as it does in mine. It’s pretty special when families who have been through a lot trust you with their precious cargo. Also I love being a part of so many ‘firsts’. First steps, first time sitting up, first time learning to push themselves in a wheelchair to run away from mom….all wonderful!
What do you like least about your profession? PAPERWORK!!!!!
What do you think makes you effective at what you do? I love my patients like they are my own kids. I feel like I’m truly invested in their success and get almost as excited (sometimes more!) when they learn something new. I try to see all of my kids as individuals and try to keep an open, learning mind as I go.