Therapies
Do not worry: it is normal to feel overwhelmed at the beginning. Indeed, with polyhandicap, we have to support our child in a 360 degrees manner for their development. Priorities changes with age and with each child. The most important is to always take a step back and focus on what will bring the most results.
To do so, we encourage you not only to deal with specialists on the below fields, but also twice per year, meet with a developmental expert (or neuro-development doctor or a "developmental and behavioral pediatrician") to reassess the priorities along with your child's needs.
Keep in mind that some therapists will understand and connect your child. They will take into consideration the visual impairment, dystonia or primitive reflexes. They will adapt sessions accordingly. Others will not... As a parent it is your right to question the relevancy of what they do.
After some time, you will find the balance between stimulation (especially before 7-9 yo when neuroplasticity is at its best) and your child's comfort. There is no fixed rule. It will evolve over the years. Look if there are sometimes signs of fatigue. Bear in mind that turning the head or following a light with the eyes is very intense for our children! Also, we are parents. Let's not turn into full time therapists. They need calm moments, playing or singing... Without looking for any performance.
Here is a non-exhaustive list of the disciplines to consider:
- Physiotherapy: with a focus on primitive reflexes and dystonia (high priority for MINPP1 children)
- Massage and stretching (1 to 2 times daily)
- Feeding Therapy (swallowing, biting, tongue thrusting, ...)
- Vision Therapy
- Occupational Therapy
- Speech Therapy
- Pool Therapy
- Horse Therapy
- Chiropractor (2 times per year)
