Before entering the MAB-Mackay Centre for the first time, I didn’t know much about it. I knew it provided services to handicapped children, but little beyond that. It took only the first visit to realize that something very special happened between these walls.
Our son Bennett was diagnosed with Cerebral Palsy at six months of age. Though I had suffered a major traumatic event during my pregnancy, no one had warned us that something could be wrong with our son. We had begun to notice things about Bennett that didn’t quite match up with our experience from his two older siblings. Both Charlie (who is three years older) and Roxy (who is two years older) were sitting unsupported by the age of four months. When trying to teach Bennett to sit, I found that I couldn’t straighten his legs properly. When I would hold him upright, he would stiffen the moment his feet hit something solid.
As the mom-bells in the back of my head started ringing, I tried to find excuses as to why he was behind and so different as compared to his brother and sister.
One of the hardest things to do is admit that there is something wrong with your child. The list soon grew too long to ignore; he didn’t play with his feet, I never saw him chewing on the cloth in the bath, he never put anything in his mouth, never reached for toys, and he continued to display what we thought was the Moro reflex (when the child has the sensation of falling and appears startled while they fling their arms out wide) well beyond the newborn stage.
After being sent for an EEG to rule out seizures, we were given a diagnosis and our world was forever changed. Needless to say, it came as a huge shock to our family. Having never had any meaningful contact with a disabled child, we were flying blind in a very scary world. We learned that the stiffness he displayed when his feet hit something solid was a result of spastic cerebral palsy and that what we thought was the Moro reflex was actually a second type of cerebral palsy called dyskinetic cerebral palsy (more specifically, athetosis) which is characterized by uncontrolled and involuntary movements. We started physical therapy privately the week following his diagnosis, and eventually found our way to the MAB-Mackay Rehabilitation Centre.
It was at 18 months of age that we first brought Bennett to the MAB-Mackay. We were taken into the evaluation room and it was then that I realized that this was more than just another place for therapy. We were introduced to a physiotherapist, an occupational therapist, a speech language pathologist, and a social worker. I could not believe that they were all there for him. Little did I know, they were there for me, too.
Supportive is the first word that comes to mind when I think about the MAB-Mackay Centre. Bennett’s amazingly dedicated team has been a lifeline for us as we navigate this world. They are not only helping him achieve his goals, they are also helping us give him as normal a life as possible. They are the first people I turn to when needing advice regarding a decision concerning Bennett and they are the first I turn to with my worries about him. I do both of these without hesitation because I know they understand. They understand our fears and our concerns better than anyone else in our lives and that, to me, is one of the most important services they offer.
I was thrilled this year when we were invited to join a music therapy program. Bennett loves music, any and all music. Like any other four year old, any toy that makes noise is his favourite toy so a class devoted to making noise? Perfect. The classes allowed him to interact with other children while doing something he loved.
Attempting to give Bennett as normal a life as possible is very important to my husband and I. I took his two older siblings to a playgroup when they were younger but could not do the same with him. Instead, I have been able to bring him to hydrotherapy sessions and even a music therapy group this year. Bennett is a very social child and relishes being around others in these settings. He is a child that loves to laugh, observe, and be in the middle of it all. The hydrotherapy sessions allow him to spend an hour a week completely relaxed. I wish it was something I could give him every day. From the moment he enters the water everything goes limp and he can fully relax. He would honestly be happy to just float there the whole time. Instead, he is treated to a more relaxed version of his physical and occupational therapy sessions. The water makes the tasks we ask of him easier as he tends not to push or stiffen up as much when he’s in the pool. If his body isn’t fighting him everything is just a little bit easier.
Learning that it was unlikely that Bennett would ever be able to speak was a devastating realization for me. The genuine support and understanding that I received (and continue to receive) from our amazing team has meant so much to me. Due to his need for alternative means of communication, he has made amazing progress in their Techno Fun Lab, learning to use switches attached to his headrest to play computer games as a step toward eventually using a Dynavox to communicate. He is currently learning games that teach him to scan and select which is what he will need to understand when using a Dynavox. His favourite game has to do with a crane and a big truck that needs to be loaded with a box. The truck pulls up to a different spot under the crane each time and Bennett must move the crane over until the box is lined up with the truck then drop the box and watch the truck drive off if he’s done it correctly. He uses one switch to move the box (essentially scanning the screen until he finds what he needs i.e. the location of the truck) then uses his other switch to drop it on the truck (selecting the item or position he requires.)
This process of scanning and selecting is further simplified by using yes and no, which is how he currently communicates with us. In Bennett’s case, he has been taught that the left side means no and the right side means yes. He is able to answer questions posed by us or anyone else by looking to the right and the left. I was completely amazed when he first started to learn this and could not believe how quickly he picked it up. His speech therapist started teaching him the concept of “yes” and “no” in April of 2014, and by August he was no longer using the picture prompts on his chair tray. I had a friends daughter make him a yellow and a red elastic bracelet to wear on his wrists so that anyone speaking to him would know what he was answering. The work being accomplished in speech therapy has been a game changer for us. It has given Bennett a sense of power that he previously lacked because he is now able to make choices and more importantly, communicate those choices to us.
I am amazed everyday by what he can do. It is incredible to watch him play games like any other four-year old. The pride he displays when he’s managed to accomplish a task means the world to us. It is just as much fun to watch him make the wrong choices on purpose as he looks at me slyly and laughs, knowing exactly what he has done. He really does have the best laugh, it seems to come from deep down in his belly and just take over his whole body. It has this power to eradicate any bad moods or sadness in an instant.
The MAB-Mackay has meant more to us and done more for our family than could ever truly be conveyed in words. It has become a place where Bennett can feel like a normal child, enjoying life like any other little boy (the sheer look of joy on his face when he first controlled a motorized wheelchair with switches will never leave me as long as I live! His brother and sister were jealous that they didn’t get to try one too.) It takes a special kind of person to work with these kids and the MAB-Mackay Centre, by far, has some of the best.
Bennett’s very proud Mom