Physical Therapy and CP-An Interview
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.
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.
Great article! Be guided by the child…so important! An able bodied child would just move on if s/he didn’t like an activity. A disabled child doesn’t often have that choice. If a child isn’t learning a skill with one method, then why not try a different one. The results an be the same. Isn’t that exactly what we do with able bodied children?
So nice article. I like it and I can see myself as a PT and the same ideas. It is really good to be open-minded and to talk with child’s family. I agree with that and I am practicing it. I agree that there is a time when the child sometimes have to have break from services aswell.
Agree. The care-givers and the CP child themselves are great teachers. Treating a CP child teaches you to respond to that particular child’s needs, sometimes by trying different techniques, or by taking bits from different approaches and tailoring it for that child. Every child and their family teaches you something new.
I agree with MS. Jones, that we should try different differnet therapies to get useful to our children functional outcome. Parents should know what they excatly needed and need of the child function.
I agree that we have to take cues from the child and family. It is important that equipment is user friendly and fits into the space and lifestyle of the family. I also like the comment to try skills that may seem a bit of a stretch. I remember trying a tricycle with a child who walked with a gait trainer and had very spastic lower extremities. The child was fearful of trying new skills and would scream. After a couple of weeks of practice and encouragement, the child could pedal the tricycle up and down the school hallway and was quite pleased with herself.
This interview is very nice.It is very important to treat and act with a patient as a member of your own family. involve parents and kids in a treatment and make a confortable environment of work.
This interview is very nice.It is very important to treat and act with a patient as a member of your own family. involve parents and kids in a treatment and make a confortable environment of work.
very informative interview. it can be used as a guideline to treat the children with cerebral palsy.
Burnout! I totally agree with her. Even children with CP gets tired from the treatment, so it is important that they be given a break. Sharing same thoughts as Ms. Mary Jones. As therapists, we need to see each child uniquely. Parents and caregivers also play a vital role and they need to feel that they are part of the team. Open communication between the family and therapists is a must. Being a pediatric therapist is tiring but very rewarding as well.
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I agree totally with Ms Jones that working with CP demands patience, tolerance and endurance in order to reap benefits with the CP child. Yes it can lead to burnout. I’ve also experienced the “dead end” that you sometimes come to and can be disappointing……but it also tells us to keep a check of whether we’re pushing too hard in the particular milestone development.
I agree with all the answers given. Parents should be encouraged to be involved effectively in the management of their cp child to enhance quick recovery because they spend more time with them than the physiotherapist.
Very nice article. I could appreciate the passionate and optimistic approach. Being open-minded when dealing with the families and clients with cerebral palsy is so important because the interventions have to be tailored to suit individual needs.
Nice. I agree with all answers. As a therapist we should be open minded to discuss with parents. Parents and teachers are also important while dealing with cp children since most of the time they spend with parents ans in school
I totally agree with the article. Families with children with CP needs patience and understanding in order to help the children with CP optimally.
A very lovely and helpful article. Reminds me to look at the bigger picture of what we are doing as therapists and to enjoy what we do being able to make such a difference and being part of their lives. The families we have contact with will remember us forever and we should remember that.
Parents should be encouraged to be involved effectively in the management of their cp child to enhance quick recovery
Parents should be encouraged to be involved effectively in the management of their cp child to enhance quick recovery
Excellent article! I enjoyed how real and practical Mary Jones is. I have families that bring their child’s equipment to the school setting because their home is simply too small to store all of the equipment that has been ordered for their child with CP. That is sad. I have a student with CP that entered grade school performing at grade level. By the end of the year, he had fallen behind due to being taken out of school during core academic times for his therapies. As a team, we had to sit down with the parents and discuss/weigh out what was more important and how to modify his therapy times in order to allow academic teaching to happen. It’s a balance for sure!
nice article.family and carers play a big role.I like the statements saying that the family should speak up and when your are treating to think that a child is yours or future generation in the community
As many have said; we all think that families can play a very crucial role in management of children with C.P. But im still concerned about patients in rural areas that are still not well educated on these things let alone not understanding the condition of their children due to other things such as cultural beliefs….
Once again the importance of the child and family as centre of the therapy is my take away message. Secondly communication skills of therapist with child, family and other role players is vitally important to empower them.
I completely agree with this article. It is paramount for the support of the family members as well as all health professionals involved working together witj the child and their families to support each other and increase their awareness of cerebal palsy conditions and factors which influence their development or prohibition of development through individuals unique impairments with CP. And tailor interventions with that individuals specific needs.
The role between families support and professionals can be a vital link for improving the development and positive progression of a child with CP and may also encorage teamworking and better communications and interactive skills between other siblings whom lack the understanding of CP and help support them even more/ alieviating frustration or non-empathetic family members.
The role between families support and professionals can be a vital link for improving the development and positive progression of a child with CP and may also encorage teamworking and better communications and interactive skills between other siblings whom lack the understanding of CP and help support them even more/ alieviating frustration or non-empathetic family members.Helping thus through therapy to support, accept and empower the child themselves.
This lovely article reinforced my practice- I chatted to an adult living with CP and her regret was her childhood was one big therapy session, and she wanted to be a normal kid – in her words- but her parents were striving for a cosmetic gait pattern that wasn’t achievable.. She flys around in her power WC and does her unique floor travel. Now we have the GMFCS to let parents set some realistic directions and guide them to allow their child to work with their unique neurology.. Using best practice -watching of course for skeletal/ joint damage risks etc! Out in their communities.
thaks for you…
True parents should be encouraged to be involved effectively in the management of their children because they spend more time with them.
great interview, I have learnt a lot… its a motivation
i think all physiotherapist involved in the rehabilitation of children with cerebral palsy should have an open mind and patient with the parents of these children.
Very insightful… The family should always be involved in managing the child. After all an hour or two per week with the therapist will not be enough to maximize the functional potential of the child.
i think all physiotherapist involved in the rehabilitation of children with cerebral palsy should have an open mind and patient with the parents of these children
A insightful interview
Ms Jones is right, most parents believe we can fix their children problem, like the brain damage never happened. I believe proper counseling will go a long way in having parents co-operate with physiotherapist. Thanks.
Good point about burnout, sometimes the children are burnt out but the parents wan to continue on.
it is really an interesting interview.therapy alone in rehab centre is not sufficient but also the positive role of family or caregiver has an effect on childs health.its a motivation.ihave learnt a lot.
I appreciate her perspective, ” we cannot change the underlying impairmennt but we can teach children to move to the max”, and her open mindness to both child/family & treatment approach, and the ability to take a break from treatment
All that Ms.Jones has spoken in the interview is what we come across on day to day life. Excellent. Not working with a single theory (NDT), where as working with pieces of other theories too. A belief that parents have that PT’s can fix. I guess the parents believe that we can fix because of the trust. The point is that parents from all cultures have this mindset. ‘Burnout’ is another important point. The point that it is OK for families to be families and kids to be kids and it is OK to be off therapy for some time as long as the parents are able to integrate therapy at home is so true.
It is ago of interview and I do Agree with Ms Jone when says that as PT’s “we cannot take away an underlying genetic or neurological impairment” and this is very true as our role as PT’s would still be to figure out on how to help these children function to their optimal level. This interview has got also an important point which should always be taken into consideration and this is making sure we transform the activities that we do the child to the parent and or the family as they are the once staying with the child most of the time.
A very informative type of interview andI agree with Ms Jones when she says that as PT’s “we cannot take an underlying genetic or neurological impairment”, however, we have the role of helping these particular children function to their optimal level. Another important note which we should take note of as PT’s is to make sure that we transform the activities that we see working better with the child to their parents and or families as they are the once spending most of the time with the child and it is also good to be open minded as their is no Recipe to the management of children with CP and each child is unique.
thanks for the nice interview.
I realized the relaionship of kids, family and PT.Many thinking of theof child and appropiate problem.ondtions
I realized the relaionship of kids, family and PT.Many thinking of theof child and appropiate problem.ondtions
thanks for the interview i have learnt a lot.
involve parents and kids in a treatment and make a confortable environment
involve parents and kids in a treatment and make a confortable environment
very informative interview
It is so great and involves alot,the information contains much
MS Jones thank you for this interview
The interview was an eye opener and a confirmation that every CP child is different and should be treated differently. Also that they can become exhausted from a treatment too and should be given breaks between treatments.
i totally agree with this concept its along relation between physiotherapist ,child and family
very informative article talking about relation between PT,family and child
A lot of what was said in the interview is what I experience as well with the children that I am working with. Good to know that the ups and downs of our profession are common place amongst us all!
I totally agree with ms Jones there are lot of misconception about pt and their limitations.as pt we can help child and improve his ability.
These are the questions which we come across on are day to day life when we treat CP child.it is very informative for us as well as for parents..
This is very informative and interesting as physiotherapists can help children who have CP
A good interview with very helpful responses
very inspiring and humble, right to the point, thanks for this interview
Great answers and true to build a good relationship during treatment between parent and PT.
Very informative interview and that parent education is play important role and parent centered therapy is getting attention.
thank you for the intresting interview,i think that the relationship between family and therapist is crucial as well.
i think that all the therapist should involve the family in the treatment as well.
I feel that all the therapist fast involve herself and treat kids as their kids and involve family members especially mother during therapy times
Really nice read. Learn a lot from this interview.
I agree completely. You have to set goals that are reasonable and that the family sees as important so they follow through. Seeing me once per week isn’t enough.
I like the article because its so educative.
I am agree completely.set a goal fast and according to that you plan intervention.
a very informative interview ….and totally agree with it
Parents have the most role in treatment for the children with CP.
Very informative artical, I think there are a lot of messages that can be taken home from it!
well done
nice article.. i share ms Jones’s views. PT shouldn.t be a one theory thing rather there should be room to explore new ways of improving the quality of life of these kids.
Great article. PT interventions are most effective when all concerned work together. I agree that it is paramount to identify what are the goals of the parents so as to enable them to feel apart of their child’s rehab process.
yes excellent explanation i also pediatric Physical therapist
Great interview and excellent explanations
I quite agree with Ms. Jones. Being open-minded and collaborating with parents and caregivers is effective in CP management.
I so much love your answers and your way of practice. Better results are made especially when treatment is turned to play ground with therapist and family. You are on point
This was a good interview with a lot to to bare in mind.
It is really an interesting interview. Therapy only in rehab center is not enough, parents has some positive role that can be effect on child development. Its a very realistic interview that we heard from some parents. I learnt a lot of new things.
The interview was very nice and it’s very essential for therapist.
it is an informative interview
It is very informative interview. I am very much happy to join this type of interview.
This interview is well prepared and informative. Tt is very exciting
This interview is well prepared and informative. Tt is very exciting
very informative.Asking the parents if the equipment even suits their house is a big thing. If it doesnt it will equate to poor co-operation.