Declining ability to walk in school aged children diagnosed with Spastic Diplegia: Is this an expectation?

I’m inspired to write about a 9 year old child’s journey in becoming independent with her ability to walk in the community, school and home to regressing significantly to a point where she could no longer walk 2-3 steps without her walker within a couple of years. This in spite of being seen by 3 physical therapists at one time. Each therapist was seen in a different environment- one was seen in her school, another in a rehab hospital and yet another in a private outdoor clinic.

I am inspired to write this blog to help parents, professionals and school administrators understand the importance of  services that are done “on behalf” of a child. Traditionally, everyone advocates only for “direct hands on” therapy with a majority believing that “More is Better”. In my experience very few people  value the importance of services done “on behalf” of a child. Everyone likes the idea of collaboration but, if the culture of the school district/hospital/clinic does not enforce collaboration, it is usually put in the back burner. Opportunities to brainstorm about concerns may be missed when “consult time” is not penciled in the professional’s schedule and functional decline may be the end result -as it was in this little girl’s case.

Amanda ( name changed) was known to me from the time she turned 3 years old.  I remember the day I first saw her- her primary mode of exploring her environment was by crawling. She was a happy little girl diagnosed with spastic Cerebral Palsy, with very supportive parents and eager to join school as soon as she turned 3 years. I remember her dad being ready to build the therapy swing unit in their home if it helped his little girl- a sentiment that most dad’s may have.

When she started preschool, she had a regular walker and a new pair of foot braces. Her teacher informed me that her biggest concern was that Amanda was falling a lot. At that point, I decided to assess for the appropriateness of her foot braces and realized that her brace ankle joint was set at the wrong angle and was forcing her feet into an abnormal position. This impacted her balance and caused her to fall so often. After getting consent from her parents to talk with her orthotist and physiatrist, her ankle angle was changed and her frequency of falls decreased significantly. We also reassessed her with different walkers and changed her walker to suit the school environment.

Amanda blossomed from being able to walk with her walker in the school hallways, with accommodations to leave earlier or later so that she does not navigate the hallways when it is crowded with children, to being able to walk alongside her peers in crowded hallways with her walker. Her classroom staff were ever so ready to do anything that I asked them to do for her and her mother came in regularly to upgrade her home activity program.

She soon started venturing to negotiate curbs and uneven grassy surfaces in the school grounds. By the time she was seven years old, she was able to walk without her walker within the school environment and in the community. On days that she was unwell ( cough and cold etc), she would use her walker.

When she was 4 years old, her mother informed me that she was unable to participate in extra curricular activities or even enjoy the thrill of riding a bicycle with her cousins or peers. Fortunately for Amanda, AMBUCS – an adaptive bike company- donated a customized trike to her and she was soon having the wind through her hair as she rode alongside her cousins by the time she was 6 years old. She was dancing with her peers by the time she was 7 years old and able to tackle almost all play structures in the playground with adult supervision. She loved the outdoors and we were all glad that we were able to find ways for her to experience it.

I will never forget the first day of her kindergarten when she transferred to her home school. I went to her building at the end of the day and it seemed like almost all the aides, her teacher and school nurse were at the door waiting for me to come. They did not know what to expect from her physically and if she was safe to use the school playground and other mobility related concerns. Soon, they realized that she was able to do almost everything, she just needed some modifications in the environment and knowledge about techniques in helping her become even more independent. By the end of first grade, she was able to participate in “Tug of War” and climb the bouncy structures in the school grounds on “Field day”.

I saw her as her school therapist from the time she was 3 years to 7 years. In December 2014,  she was able to walk without her walker with a mild crouch ( bending at the knees) with her ankle and foot braces within the school environment. She was able to keep up with her peers in school hallways and participate with her peers during PE and recess.

Functional Decline in Walking abilities.

I saw her again in my home clinic in December 2016. When she walked into my clinic, her thighs were almost parallel to the floor and she fell to the floor after 4-5 steps. She was unable to walk without her walker, and when walking with her walker she barely took any weight on her legs- she took almost all the weight on the arms and hands. When her parents brought her to me, she was receiving PT almost everyday, but by 3 different PTs.  School PT- 2/week; PT at a pediatric rehab hospital 1/week and hippo therapy ( horse riding) 1/week.

She had received her new ankle and foot braces a month earlier and it was immediately apparent to me that the braces were not appropriate for her and was hindering her instead of helping. The height of her walker also needed adjustments to prevent her from taking so much of the weight on her arms instead of just dragging her feet along.

I reflected a lot on how she could have regressed so much in such a short time. She had parents who were very supportive and who were doing everything that they possibly could to help her. Her school teachers and supportive staff were open to all suggestions and recommendations that would help increase her mobility potential and ability to participate with her peers during PE , recess, school concerts etc.  Her school PT seemed to have a good rapport with her and I am quite certain her treatment interventions during her hands on PT session may not have been very different from mine. I believe the hospital based PT may have been in a better position to use equipment that was not available at school and possibly provide more satisfying therapy sessions and hippo therapy is supported by evidence and research as an effective intervention for children with cerebral palsy…

So what was missing in her intervention protocol in the last 2 years since I last saw her?

Contrary to most people’s beliefs, direct therapy services is not as critical as the services provided on behalf of a child. In simple English- educating parents and school staff on how they can help a student with special needs throughout the school day is as important, if not more important, than when the therapist is working directly with a child.

When a child is not progressing towards their annual goals, parents usually advocate for more services, however they almost ALWAYS advocate for direct pull out services. In all my years of providing services in public schools, I have yet to come across a parent who advocates for “indirect services” or services which address communication, collaboration and consultation with the rest of their child’s IEP team including specialists from the community that their interacts with.

Everyone agrees with the idea of communication, collaboration and coordination, but it does not happen with chance meetings with the teacher(s) in the hallways or, a minute here and there- when pulling the student out of the classroom for therapy in the therapy area.

When the school culture does not include therapists in meetings ( other than IEP meetings) where a child’s challenges are being discussed, a therapist may rarely get an opportunity to provide informational services in a timely fashion. It takes a certain type of therapist to advocate for a student’s needs in a public school environment. Most school staff want to help a student optimize their school experience, but they usually do not have the time built into their schedule to discuss their concerns with the therapists. Therapists with the ability to combine innovative scenarios with clearly written recommendations in a child’s Individualized Education Plan (IEP) empower school staff to set the stage for outstanding results.

Many therapists would love to provide services “on behalf” of their student but are struggling with getting their voices heard, SO…….

How did I work around this challenge?

In the beginning of the school year, I met with all my students teachers and empowered them with accommodations and modifications which worked and those which did not work for their student in the classroom and in school. If an informational session with the teacher and/or support staff was appropriate, it was provided within the first couple of weeks of the new school year. If the whole class needed to be informed about why a child was “different” from their usual expectations and how they could interact with the student was identified during these initial consultations.

I dedicated one week per month to collaborate, communicate and/or coordinate services on behalf of the students under my care. I kept the first month ( consult week) of the marking period to collaborate with teachers, the second month with parents, third month with other therapists and 4^th month with case managers. I did not provide direct services during this week, so I could be flexible and meet team members at a time and day that was convenient for them. I sent out emails to the teachers I was meeting that week, maintained a log of dates, topics discussed and follow up actions. It worked like a charm. Staff knew how and when to communicate with me regarding student concerns and any regression or progress was conveyed to me in a timely fashion.

In this particular child’s case

Her classroom aide, lunch room aide, recess aide , classroom teacher and specials teachers ( PE, music, computers, arts etc) were aware of all her precautions and recommendations in the areas they supervised/instructed her.

They all received an in service during the first month of every academic year regarding ways in which they could prompt her- physically, verbally and/or gesturally to optimize her school experience.

The nurse kept me updated with any medical concerns or changes.

Everyone was made aware of the difference between a “soft fall” and a fall where she bruised herself or injured herself. Staff always felt better when they knew that if was OK for her to fall, as long as she did not hurt herself. They were aware that she needed to be challenged in different environments to develop her balance and sensory system to optimal levels.

Everyone was updated of the progress she was making during her physical therapy sessions so that they knew how to wean their prompts and increase independence during school activities.

Why did it make a difference?

Everyone interacting with her knew when ( what circumstances) and how to contact me. Eg if she fell and hurt herself, they sent me an email the same day. If they noticed that she was unable to do things ( related to her mobility and posture) that she could do previously – I was informed during my consultation session with them. If they felt they were giving her more/less assistance- either physically or verbally in certain daily activities, I was informed during an upcoming consult or if a consult was not due for a while- inform me by email.

This feedback allowed me to make timely modifications to my recommendations to school staff to ensure that she maintained by her mobility status at all times and strived to improve it with daily opportunities to practice her emerging skills and increase her endurance, balance and stability. As a result, this little girl only improved her mobility status every school year. She went from using crawling as her primary mode of locomotion in preschool to walking without her walker in school and in the community by the end of her first grade.

As a parent- what does this all mean to you?

Consultation is the future of school based therapy services. Consulting and collaborating is a dynamic, delicate space that requires attention and skill. Selecting the frequency of consultation and identifying the appropriate method of communication is imperative when navigating these waters.

When a child’s IEP does not reflect consult services on a regular basis throughout the school year, it runs the risk of not capturing concerns/regression and making effective modifications in a timely manner.

Parents would benefit from becoming aware of the different service delivery models and ensure that everyone interacting with their child, especially a classroom/personal aide knows how to help their child throughout the school day.