Benji's First Steps

Benji had low muscle tone. This affected his ability to hold his head up, sit up independently, crawl, stand, or walk.

From Day One: Supporting Benji Through Hypotonia

Benji's low muscle tone (hypotonia) was present since birth, and we attempted every form of early intervention to help him meet motor milestones.

We worked closely with numerous occupational and physical therapists. In the early days, we tried to encourage "tummy time" to increase his tolerance to being prone and to holding his head up. Benji never learned to crawl or be on all fours. In 2006, we moved to Toronto from Philadelphia and tried traditional physical therapy for several months, but Benji was not making gains.

We then heard about an alternative form of physical therapy called MEDEK.

MEDEK (Dynamic Method of Kinetic Stimulation) is a specialized physical therapy approach designed primarily for children with motor delays or neurological disorders.

Unlike traditional physical therapy that focuses on working within a child's current abilities, MEDEK aims to provoke automatic motor responses and stimulate the development of motor skills that haven't yet emerged. It's based on the belief that the brain has natural motor programs that can be activated through specific exercises.

Therapists use hands-on manipulation and positioning to place children in challenging positions that require them to activate muscles and develop postural control. The exercises often involve reducing the child's base of support, which forces them to engage core muscles and develop balance reactions.

When we started MEDEK, the very skilled therapist told us it would be harder on us than on Benji. She warned he would cry and protest. She told us to stay the course and provided exercises for us to repeat at home every day. We were skeptical. Seeing Benji so upset and seemingly protesting seemed terrible. On the other hand, the therapist stated she was confident that Benji could and would succeed in learning to walk, and that within a short time he would no longer protest but become an active participant in the therapy.

Given the failure of other forms of physical therapy that we had already tried, and the kindness of the therapist and her reassurance and reporting of many success stories, we took a leap of faith and decided we would give MEDEK an honest try.

The early weeks were very hard. However, daily practice and consistency did bring about change. Benji was meeting therapy targets and the exercises were advanced. Soon we bought the signature MEDEK boxes and Benji was starting to do remarkable things, like balance on one foot while standing on his father's open palm. Benji's dad learned to move Benji's feet through a series of boxes while Benji remained upright.

It took a lot of skill, patience, and dedication on everyone's part, but after about 18 months Benji no longer needed MEDEK as he was able to walk holding someone's hand. He could also cruise around a room holding on to a sofa or moving on to a chair. We then realized that he could probably walk without the need to hold someone's hand, but he appeared to be too scared. When we would let go of his hand, he would stop in his tracks. Eventually we would simply touch his shirt and that would be enough for him to walk. He believed that he needed help, but he was walking on his own.

Finally, in August 2007, when he was about three and a half years old, while standing in the lobby of a hotel checking out as we completed our family vacation, he took steps by himself. He walked from one sofa across to another. This was a milestone and was the first time he had enough confidence to walk alone. Over years his walking stability improved, though this has required ongoing effort and training.

In 2017, due to the fact that Benji had internally rotated hips (which occurred because his low muscle tone resulted in abnormal development), he was stepping on his toes when he walked. We were told that he required an operation. This was called a "derotational osteotomy," a surgical procedure where the thigh bones are cut and rotated outward on both sides to correct the inward twisting of the hips caused by low muscle tone. It was a difficult surgery and required six weeks of inpatient recovery. Benji and his support team worked very hard with him daily while he was in rehabilitation at Holland Bloorview. As a result of everyone's hard work and determination, Benji was discharged two weeks early at four weeks.

Benji still has in-turning of his ankles when he walks, likely due to patterning that remained after so many years of walking in this way. However, the surgery corrected the alignment of his hips and reduced his chance of developing arthritis of his hips at a young age.