When parents are first told that there might be a problem with their child’s brain or nerves, most are hopeful that with hard work and the right help there will be improvement. Young parents are game to try just about anything if it holds the tiniest shred of hope for their child. Over time, this optimism fades and most people start to adjust their expectations downwards.
The exciting early gains in function are gradually replaced by smaller accomplishments that seem to take longer to achieve. Life gets more complicated and school demands grow yearly. Orthopedic surgery to correct malalignment is often booked for later childhood and it is hard for parents to avoid thinking of this painful event as a failure…wasn’t all the therapy and home stretching and exercises supposed to avoid this outcome? Surely we haven’t had Botox injections every 6 to 9 months for nothing?
In my experience, most parents are pretty tired out and discouraged by the time their child is entering puberty. Living with a teenager is difficult at the best of times and any chronic medical or neurological condition complicates the picture. Lowering their expectations for change is completely understandable and completely wrong!
Up until this point, the child has been a pretty passive partner in the whole rehabilitative focus. Going to therapy is part of their life. Most children develop a good relationship with their therapists and are cooperative. But, they are children and have very little concept of long-term goals or how well they are doing compared to the parents’ goals of improvement. Puberty changes all that. As you can see in the diagram, at this age the child wants more. They want to be like their peers. They want to wear high heels. They want to take part in sports. But these two competing pressures, of the parent to adjust their expectations downwards and the preteen adjusting their demands upward, creates a perfect storm.
There is good news and there is bad news. First the bad news. In puberty, the child enters their second biggest growth spurt. At this time, all of the things that we do to delay or avoid malalignment have to be increased, not decreased. Many who have avoided a primary surgery, will now need orthopedic surgery. Bad biomechanics have to be corrected if you want an improvement in movement possibilities.
The good news is that they also have a second major spurt of brain neuroplasticity. It has been estimated that teens gain an extra 40% of brainpower during this tumultuous time. Their brains are motivated for change and it is time to do new things and to do them in intensively. The teen years demand an entirely new approach to pediatric neurorehabilitation. It is not “Good Enough” to do more of the same harder. The first step is recognizing that we have to throw out complacency, shake up the whole picture, and get set for a summer of change. More on this topic next week. In the meantime, please read or re-read these links.