I have learned over the years that the more I follow my daughter’s lead, the more success she has. When she was younger, it was easier for me to make all of the choices for her care, and guide her accordingly. Now that she is seventeen, I am making a conscious effort to make sure she has control over interventions and/or procedures she may need. This truly has to be an intentional shift in my thinking, because I spent most of her life making decisions for her. What I didn’t realize until recently is that she has been watching and learning from my actions and words to professionals that care for her in one way or the other. I have been teaching her how to advocate for herself without even realizing I was…
For so many years I was worried about teaching her skills that would help her to be able advocate for herself as she got older—I would intentionally point out to her things I was saying or doing at a doctor’s appointment, or at a school meeting. But recently she taught me that regardless of my intentionality, she was paying attention.
If you are a parent of a differently-abled child who is an infant, toddler or school-age, of course you are making decisions for him or her. You research, ask questions and make the best choice for him at the time he is in need of something to help him be successful. Please realize that regardless of his ability to communicate, move or understand—he’s watching and listening and taking in things subconsciously. As that little one grows, each and every word you speak on their behalf, they will be listening—and in his or her own way, they will learn from you.
My prayer this month for you is that you will not be worried or concerned with your child’s ability or inability to advocate for themselves as they grow. I hope and pray that you can learn to enjoy the good moments, days and weeks with your child. I know that we all worry—each and every day—I used to be a master worrier. But I’ve learned to become a master at fostering hope. And you cannot have hope for the future without first having faith—faith is the substance of the things we hope for. This is something that takes practice and perseverance. I pray you will have:
Faith in your ability to be the best that you can be with each day as a new or seasoned special parent.
Faith that no matter what obstacle your child will face, that you will make the best decisions that you can with the information that you have at the time—and be confident that you are doing the right thing.
Faith that allows you to see all the little things- big and small victories– and be present in the moment.
Faith that even on the most challenging days, when you feel like things will not get better and you can’t find hope anywhere, that you will be able to keep on keepin’ on.
My daughter recently had a surgery on her left hand to allow her to use it more functionally. This is something neither one of us thought was ever possible. When she was younger, the doctors told us that there wasn’t such a surgery, and she would have to use her hand, which was so very tight, with limited mobility. When we found a surgeon that performs this surgery on a regular basis, during the initial consultation with him—my baby girl who has been watching me speak for her at appointments for seventeen years—spoke to the surgeon and asked all the questions that I would have asked. I didn’t have to say much at all. She made the decision to have this surgery.
During the first week of recovering, she said to me in the middle of the night, as we were trying to make her comfortable enough to sleep—“how did I get so lucky to have you as a Mom?” And I replied, “I was born to be your Mom, God chose me.”
Have faith that you were chosen, too—and as your child is watching and learning-it will breed hope in you and your entire family.