“If you don’t know where you’re going, you might not get there.
You will end up somewhere, but it will it be where you want? We all want the best for our child, but what does that mean? This program is about how to define and plan for each child’s personal best.
Parents are world-class experts. No one knows your child’s strengths and weaknesses better than you. No one knows better than you what you are prepared to do and what resources your family can bring to the table to facilitate change. So, you are in charge of this program. The first thing you have to decide is whether or not you are happy with your child’s present educational and rehabilitation program. If you are not, then the first step to improving the situation is actually asking yourself “Where are you going? What do you see as your child’s future?”
It sounds simplistic, but every book about coaching, business or personal success that I have read starts with asking the question “What do you want and what will you do to achieve your goals”? Parents often lose sight of long-term goals as their time and energy is swallowed up by all the demands of routine day-to-day care that your child needs now. So, your first task is to make the time to stop and think about the future.
A wise mother taught me her way to envision the future. She developed a plan for her child’s 21st birthday. At first, I thought it was a nutty idea! Her daughter was only 5 years old. Who knew what she would be like in 16 years? She explained that she could not know who her daughter’s friends would be, but it would be important for her overall wellbeing to have friends. She said that knowing this fact helped her think, in the present, about how she could prioritize more interaction and fun with other children into her daughter’s busy schedule.
I think other goals can be envisioned the same way. What are you trying to achieve with your current program? In my experience, most parents say they go to therapy so that their child can learn to walk. Well the odds are on your side! Current cerebral palsy registry data teaches us that roughly 80% of all children will walk and 60% of them will walk independently. The odds go up in your favor to 98-99% if the diagnosis is diplegia or hemiplegia. (Will My Child Walk? Are We Doing the Right Therapy?)
I have set up a private Facebook Group so that we can have a conversation about the 20:4:80 Program posts. I would like to start the conversation with your input on how you envision your child’s 21st birthday. If you are an adult, who has already passed this milestone, what do you wish had been part of your party?
20:4:80 Program Private Facebook Group
I envision him surrounded by people who care about him and doing whatever his heart desires, wether it be going for a walk, doing to a restaurant, having a drink…whatever. My goal for him is to have as few barriers to doing what he wants to do as possible.
I see my children’s 21st to be an extremely happy affair, full of friends, family and people who have supported their jouney. I know our boys will be successful in what they wish to do in their lives and that having cerebral palsy won’t hold them back. Jack and Luke are only 4 but are confident and happy and also very determined! I have them in an amazing school and constantly push for the best treatment and therapies for them. Ability not disability is our motto!
I see my daughter surrounded with friends & family dancing the night away. I see her giving the most amazing & intelligible speech that inspires those that hear it to strive for the dreams they thought where unachievable. Though it may sound silly, I see us both wearing the most amazing shoes & though our feet are aching, the shoes are totally worth it!
At my sons 21st birthday party (he’s almost 6 now), I see him in an apartment he has rented with his twin brother and two friends at university. It is Saturday night and they are eating chips and pizza and drinking a few beer while watching the Leafs on TV. They are cheering and high fiving and laughing. Later that night, they will walk (my son with maybe one cane…but hopefully with no device!) to the campus bar to meet up with other friends and enjoy being 21! Of course, the next day he will have brunch with me and the family! After brunch, we will drive him back to his apartment since he will have a big exam to study for since he is in an Ivy League business school
I agree visualizing the future in a positive way is a wonderful approach as this is a journey that lasts a life time. I celebrated my 21st birthday with family and friends able to appreciate where I had been and where I wanted to go. Now as I approach 50, I am back in physical therapy and working to stay as strong as possible. We can learn throughout our lifetime. It may take lots of effort, but the important things are worth the work! Thanks for sharing!
Thank you Kim for sharing this part of your story. It will be an inspiration for many young parents and teenagers who sometimes struggle with conceptualizing the future. Good for you!
I see my son walking into our house with his arm around his girlfriend as we all yell surprise. Surrounded by people who love him and have supported him and have prayed for him over the years. I see my son strong and tall full of confidence and talking up a storm. I see him walking the room and greeting everyone and updating them on his latest adventure. But mostly I see all the hard work and effort and struggles and tears that went into raising a awesome young man. My son is 3, non verbal with epilepsy, right side hemi but even right now he is so much more than these diagnosis.