Director of Special Needs Services at Oak Wealth Advisors Northbrook
As the parent of a child with a disability who I adore, I am a walking encyclopedia of her life. I know the details of her daily routines, what makes her happy and sad, and the best approaches for getting her to comply with my requests. Although it terrifies me to think about it, I need to ensure that when I am unable to provide my daughter Maddy with the supports she needs that someone else knows what to do. The best solution to this challenge is creating a guide for future caregivers and other individuals who will play an integral role in Maddy’s future.
It was emotionally difficult for me to document Maddy’s daily routines, behaviors, emotional triggers, diagnoses, medications, doctors, therapists, hopes and dreams, future goals, and wishes. I struggled wondering how she is going to live life without me. Who is going to take care of her when I am gone? Knowing that there is a strong likelihood that neither my husband or I will be around to protect our daughter throughout her entire lifetime is overwhelming. These concerns keep me up most nights. I know other parents of children with special needs have these same concerns.
Writing Maddy’s Care Guide forced me to think about the people who are important in her life now and whether they will continue to play a role in her future. Considering which family members and friends we hope will assist Maddy in the future reminded me that she will spend part of her life without me. It is overwhelming thinking about her future housing and vocational opportunities, her friendships and opportunities for true love. I agonize about the state of adult services in Illinois and the challenge of financing her future. To give her the best chance at having success in the future, I want to surround her with individuals who will care for her and protect her from anyone who may try to take advantage of her.
While much of Maddy’s future cannot be controlled, I can control how much information is available to future care providers. Upon realizing this, completing Maddy’s Care Guide became my goal. I recognized that I did not need to engineer every employment, recreational, or social opportunity in Maddy’s future. The Care Guide is a fluid document that I will need to modify periodically. Her support network will change as the years go by. As Maddy becomes more independent, the document will reflect her ever-changing hopes, dreams, and interests.
Although the first version was challenging to complete, I am relieved that it is done. I look forward to Maddy playing an increasing role in the revised editions of her Care Guide. Completing the Care Guide gives me comfort knowing that I am leaving behind a roadmap filled with information that will help Maddy be safe, successful, and happy in the future.