Dear Parent Who Just Learned Your Child Has Cerebral Palsy:
Hi there. I’ve been where you are.
Has the feeling of shock set in yet? Just breathe. I know this was not the way you had it planned in your head. Your child was suppose to be healthy. This new reality can be terrifying, but it won’t feel like that forever. You are just taking a new journey with a different path. How you travel down that path depends on you.
Over the next little while, a lot information will be thrown at you, so you need to be in the present. You need to understand what is said to you, and what you don’t understand, you should question. So much information… I found it so overwhelming at first, but it gets easier. Take it one day at a time.
There will be a lot of medical professionals you will meet. They will become your child’s rehabilitation team. Cerebral palsy is not curable, however, with the right team in place, together you can help your child reach their full potential. You can be reassured, your child’s CP will never get worse. You will meet a pediatrician assigned to your child (if you haven’t already), a pediatric neurologist who will oversee her development for the next number of years, and then she will receive services from physiotherapists, occupational therapists, and speech and language augmentative therapists if needed.
You will be assigned a social worker, and if this service is not offered, fight to receive it. Your social worker can assist in counseling your family, providing information on your child’s diagnosis, assisting in obtaining funding for equipment, respite services and other valuable pertinent information. You may also be introduced to a surgical team that consists of an orthopedic surgeon, who can help treat any hypertonic tone (tight muscles) or hypotonic (floppy or loose tone), and a gastrointestinal specialist and surgeon, who will help treat any digestive issues your child has. This can range from minor to severe acid reflux or GERD to swallowing problems that hinder your child’s ability to eat. Your child will also have their eye sight and hearing tested. If there are any issues that arise, your child will then be monitored and treated by the corresponding specialists.
With this new journey, you will face some challenging times. You may be going through a grieving process. Yes, I said grieving… whether or not you can admit it or understand it, you are emotionally mourning the “loss” of the “plan” you had. You had planned to have a healthy child. You need to talk about and face these very real emotions. This is where you will feel very grateful for having a social worker amongst your child’s team. They offer wonderful counseling services. It won’t be easy… you may feel guilty for having these feelings. I’m hear to tell you not to be. I myself went through this; it helps to acknowledge what’s happening so that you can accept your new journey.
Advocate, advocate, advocate! You are your child’s voice in a society where she needs to be heard. This might include making sure she will have an Educational Assistant, someone who will give her support in learning when she starts school. You may also need to advocate for specialized equipment to help improve your child’s quality of life. For example, a wheelchair or walker. My point is, you are her biggest supporter and can’t be afraid to speak up when needed. If you don’t advocate for her, who will?
Give your child every opportunity! No one has the ability to predict what the future will hold. Doctors are eager to provide you with lots of possibilities, or what I call the “doom” and “gloom” of what your child’s future will be. My advice: take that with a grain of salt. You will also want to throw the entire idea of “milestones” out the window. Your child will achieve her accomplishments at her own pace. Be present in the here and now, because when these accomplishments happen, there is no better way to describe them, other than miracles!
You will feel moments of pure joy and will experience the beauties and wonders of life, like no one else. You will begin to slow down and appreciate these gifts through the eyes of your child. You will have rough, difficult moments, but hold onto the miracles. They will provide you with the hope to surpass these challenging times.
Well, Parent, your journey has begun. You have been blessed with a beautiful gift. Take your journey one step, one day at a time. Your life will forever be changed for the better.