As the parent and primary caregiver of my chronically ill son, I feel that I really understand and know his needs better than most anyone else. After all, I have walked beside him for his entire life through all of the ups and downs of his illness and resulting conditions. By now, I have reached a point where I can anticipate his needs and intrinsically know what works best for him to thrive and succeed in his daily environment.
Don’t get me wrong. I recognize that I definitely don’t have all the answers. I can’t get there without the help and support from others. So when I interact with the people that touch and affect his life, I often ask myself:
How do I ensure that others know, understand and try their best to ensure my son’s needs are met, in order to create the best environment possible?
My answer quickly became very clear…. “create a sense of partnership or teamwork.” Act as though I am on a team and others are my teammates!” We must work together to make things happen. This includes and applies to all of the people who interact directly or indirectly with my child…...doctors, nurses, therapists, teachers, principals, coaches, schedulers, school nurses and even school bus drivers, among many others.
So, the next question becomes:
How do I create a strong sense of partnership or teamwork?
I came up with six points that really make a difference and apply to every conversation or communication I have with the people that touch my son’s life. These points have enabled me to obtain the best possible support and environment for my son.
Acknowledge each person’s workload. People want you to recognize that your child is not their only responsibility. Build a rapport and be supportive of the entirety of their responsibilities.
Rank and prioritize the most important outcomes desired. Be realistic. Prepare ahead of time what is most important to you. Skip the small stuff and be clear on what your priorities are for your child - “the absolutes” versus the “would be nice” to have. Avoid being too demanding.
Make people feel you are working with them and value their thoughts, opinions and expertise. Even when you know what you would like to see happen, make others feel as if you have come up with a solution together and it’s a joint effort. You never want to appear as the all-too-knowing parent. You may know the outcome you desire, but let others determine the road to getting there.
Compliment people on the things you feel are done well. So many times, people only call out the bad things. Let people know when you are happy with the good things; recognizing what they have been able to accomplish - the efficiency and/or effectiveness. People want to be acknowledged and valued.
Stay calm, cheerful and positive no matter what. Be Patient. This can be really difficult. Bite your lip if things are not going the way you would like. Give people the chance to make things work.
Follow up and be (pleasantly) persistent if needed. Check in on a regular schedule to ensure things are going smoothly. There is a fine line between bugging someone and being persistent. Use your gut instinct on how hard to drive. (Now there are times when being gentle is not possible - for example - if they are not meeting the agreed upon school IEP or 504 plan.)
I have to remind myself of these points whenever I communicate my son’s needs with others.
I've found that creating a sense of teamwork is not always an easy task and takes careful planning, plus well thought out words on my part. Words are powerful and you need to communicate in a direct manner...but with tact, diplomacy and grace.
Realistically, there is no way I can make all environments work perfectly for my son. I can’t control it all or be part of it all -- and I’m not supposed to. My child has to be comfortable and thrive in all kinds of environments with people other than myself. My job is to teach him the importance of teamwork and eventually how to advocate for himself.
I hope these points help as you work with your “team” toward creating the best possible environment for your child to thrive and grow.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.