What to Expect From Your Occupational Therapist
By Lee Vander Loop
CP Family Network Editor
The term cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination, and balance. CP affects the part of the brain that controls muscle movements and can often impair muscle groups needed for self-care (such as dressing and grooming) and fine motor skills needed for self feeding, writing and grasping and releasing objects.
For children with spastic cerebral palsy, the increased muscle tone may make it difficult for a child to grasp or release objects in their hand (known as fine motor skills). Ataxic cerebral palsy, which can cause hypotonia or muscle weakness, likewise may impair a child’s ability to accomplish vital tasks for daily living. Occupational therapy (OT) can help your child learn new ways to accomplish the tasks that challenge them.
Occupational therapy deals primarily with the many muscles responsible for wrist, hand, and finger movements, muscles involved in facial expressions, and tongue movement and swallowing reflexes. Occupational therapy uses a regiment of exercises and training to help a child achieve the fine motor and life skills needed in work and play, further assisting a child in realizing goals and independence.
This type of therapy can be especially helpful to children with cerebral palsy, but any child experiencing challenges with swallowing, using eating utensils, holding and manipulating a pencil, dressing, or playing with small objects will benefit from occupational therapy.
Challenges with Cognitive Motor Skills
Many children with cerebral palsy struggle with cognitive and motor skill challenges. Imagine the frustration of a child unable to hold a ball, manipulate a small toy, use a pencil in the classroom, or assist in self-care, hygiene and dressing tasks due to motor skill limitations. Early intervention and management of these issues is critical in early childhood development. Left unaddressed, the absence of these life skills can lead to severe developmental delays, a diminished quality of life, and a severely compromised level of independence. Additionally, a child may exhibit behavioral issues as a result of frustration due to limited abilities.
What to Expect from Your Child’s Occupational Therapy/Therapist
When working with your child’s occupational therapist, you should be made to feel like a part of a team. It is a team approach between you, your primary care physician, the therapist, and your child. You should be able to expect from your therapist:
Your child’s occupational therapist should communicate openly with you about what he or she is doing, what muscle groups are being worked with, and why a given approach is being taken. You should also expect the therapist to communicate with your child. Many young children are anxious and fearful around strangers. The therapist should be working and communicating with your child to earn your child’s trust and confidence. Regardless of your child’s level of comprehension and ability to communicate, the therapist should treat them with respect, patience, and compassion. If you meet a therapist who treats your child like an object and not a human being, FIND ANOTHER THERAPIST!
Compassion and Patience
You have the right to expect compassion and patience from your child’s therapist. If you feel a therapist is being overly aggressive and it seems to traumatize your child, STOP THEM.
The term “no pain, no gain” DOES NOT apply to children with cerebral palsy. Effective occupational therapy should not be painful or traumatizing to your child. If a therapist is being overly aggressive and causing discomfort, this is counterproductive and will result in your child associating therapy with pain.
The therapist is not only working with your child but should also be teaching you so that you can be consistent in your child’s care and contribute to helping your child achieve and maintain goals in the absence of the therapist.
Your child’s therapist should have written goals that are individualized and very clear. You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing.
The therapist should take periodic measurements to assess your child’s range of motion, provide you with goals for improvement and notify you of progress or regression. Perhaps your child has limited range of motion in his/her lower wrists and hands; the therapist should provide you with goals for achieving better range of motion and a timeline for achieving those goals.
You have the right to expect your child’s therapist to work and coordinate with your child’s educators in developing an Individualized Education Program (IEP) and to be an active member of your child’s IEP team. When working with a therapist not associated with your child’s school, the therapist should be communicating with your child’s educators and involved in the IEP process to ensure that the goals created are being worked on in your child’s educational setting.
The therapist should also be coordinating and communicating with your child’s primary care physician in obtaining physician’s orders for any needed adaptive equipment, devices, or other OT supplies. The therapist should keep the physician informed of your child’s progress or regression.
If the therapist feels your child would benefit from custom-made hand splints or other adaptive equipment, it’s the responsibility of the therapist to communicate with the physician, and to follow up in acquiring the custom and adaptive equipment deemed medically necessary.
Continuity of Care
You have the right to demand, and the therapist has an obligation to provide, continuity of care in relation to your child’s therapy. Continuity of care means the same therapist works with and follows your child throughout the duration of the therapy process until your child either no longer needs the therapy and has reached the goals, or it’s determined that your child has achieved the maximum benefits of the therapy.
It is NOT acceptable to see different therapists from the practice for each session.
Questions to Ask Your Therapist
Communication works both ways. You should be communicating any concerns and questions you have to the therapist. If necessary, keep a journal and note problems and challenges you see that your child may be experiencing between therapy sessions.
- Ask the therapist what you can do between therapy sessions to help your child maintain any progress achieved.
- Ask how often you should work with your child and the duration of each session.
- If your child has been prescribed adaptive equipment, ask how often you should use the equipment and the duration of each session.
- Ask about what adverse issues or side effects you should be aware of. For instance, if your child uses hand splints, you should watch for signs of skin breakdown and issues that would necessitate an adjustment in the device/equipment.