Stroke at birth
The third in a four-part series
After my son came home, I entered the world of therapies, and I became a huge advocate for Early Childhood Intervention (ECI). Having attended over 400 therapy sessions with my son by the time he was 3 years old, I learned a lot about how to work therapeutically with young children, and I picked up a few useful strategies along the way. I also realized that kids (and parents!) can become "burned out" on therapy. Based upon my experience, I encourage parents to focus their energy on whatever activity is most beneficial for their child at that moment and keep the ultimate goal of achieving the child's functional potential in mind when deciding how to best allocate their time.
Although I focus on evaluating children in my professional life, I developed a new perspective on the usefulness and potential impact of evaluations on a parent. For instance, would an evaluation change the current treatment plan or simply confirm that a child has deficits? I also became personally aware of something I have heard from several parents: It is difficult to constantly be reminded of all the things your child cannot do and how it is nice to occasionally hear about their strengths. A large component of the ECI model is teaching parents how to incorporate therapeutic activities into everyday activities. While I believe this approach has immense benefit, it can also have some drawbacks, which I eventually saw in myself and I look for in those extremely attentive and motivated parents. I realized that I was often so focused on making sure everything I did with my son had a therapeutic purpose, I sometimes missed out on the fun of having a baby. Just as children need to have time for fun with no other purpose than having fun, even if your child has special needs, parents need to allow themselves to enjoy their child as simply their child. Children like my son will have numerous therapists and other healthcare providers throughout their lives, but I am the only mother he has, and all of the other roles are secondary.
Having a child who I knew from the beginning may not develop typically was also strangely freeing. Because my job is to track a child's development, I know that I would have fallen into the competitive trap of comparing when my son met each milestone, which was made worse by the fact that many of my friends having children at that time were also neuropsychologists. Because I began to expect delays, my son became free to develop at his own pace. While it is important to know if a child is falling behind so that interventions can be started early, a child's development should not be the contest it has become, and we should allow children some freedom to develop in their own unique way.
My background in mental health also made it easier for me to acknowledge and process my own feelings of grief. Although my son survived, it was essential to acknowledge the loss of the "perfect" child that everyone imagines while they are pregnant. That disappointment is a loss and important to honor because any intense emotions that are "buried" do not truly disappear forever. I also sometimes talk with the parents of my patients about their own symptoms of Post-Traumatic Stress Disorder, because experiencing your child's serious medical condition can definitely result in feelings that a parent needs to process. Because of my work, I also do not feel the isolation that many of my families experience. In my world, pediatric strokes are almost normal, and a child whose only healthcare provider is their pediatrician is "weird." I also continue to learn so much from my patients that I am able to use myself and pass along to other families.