Setting a New Goal

Setting a New Goal

by Denise Caudill-Irons, NHI Board Member and Mom

I finally accepted that there was nothing I could do to change my current and stressful circumstances. Thus, I decided to redirect my energies and focus on a new mission in order to keep my sanity. Like some sharks that must keep moving to breathe, I need to keep thoughts going through my head to feel productive. I need to prepare, analyze, predict, and plan for ways to help my daughter achieve her best life.

A year ago, a friend connected me with another parent who has an older daughter with differing abilities. She thought it would be helpful for me to talk with someone who shares a similar journey, and who could provide valuable insights from an experienced perspective. The mom and I attempted to meet, but our schedules never aligned. Nearly a year later and a desperate need to adjust my thoughts, I reached out to the mother again. Gratefully, the timing was right; we had a memorable and informative conversation. Although the mother’s comments were not surprising, I heard them in a different way. She brought to light the concerns and worries that I keep tucked away and hidden, secretly fearing the day they will come true.

The purpose of my call was to seek advice regarding how her daughter enrolled in a special college program. I wanted to learn how they prepared for such a major life change, and if it could be a possibility for my daughter. When I had a child with differing abilities, I readjusted my expectations and perceptions for her future. Before she was diagnosed with a rare chromosome disorder, I envisioned that she would attend college. After the diagnosis, I reluctantly shelved this possibility. Then, one of my daughter’s teachers informed me of the ClemsonLife program at Clemson University. After reviewing the website, a doused dream evolved into a spark of hope.

I was thrilled that I could speak to someone who has been through the college admission process. One of my favorite quotes is, “Don’t ask directions from someone who hasn’t been where you want to go.” I was ready to receive any advice and direction this mother could provide. She was adamant about one quality: my daughter has to be independent. She would need to be self-sufficient with minimal support to be considered for any college program. I believe that I encourage and facilitate ways for my daughter to be independent. However, upon closer examination, I realize that I am directing and dictating while keeping her tethered to me. I suffer from the delusion that if I am near, I can keep her safe and control her environment. Logically, I can admit to the ridiculousness of this belief, but my fear keeps the myth burning like an eternal flame.

During our talk, the mother was direct and honest with me. I do not believe that I would have been as receptive from a friend who gave me the same information. I must give my daughter more opportunities to develop her independence and to create her own life. My daughter’s name means “industrious leader,” yet I continuously shape her environment to make her a follower. As difficult as it is, I truly want her to live independently as an adult. I want her to be able to have friends her age. I want her to make bad decisions and learn from them. I want her to be adventurous and confident when attempting new activities. Yet, my actions are in complete contrast with these objectives.

Realizing the problem is the first step, and I readily admit that I have a problem. After experiencing this assisted awakening, I am making small adjustments to my parenting. I am encouraging my daughter to complete more tasks independently; in actuality, I am refusing to do them. I am also searching for activities for her to do without me. Eventually, I hope that she will begin spending nights away from home and go to a sleep-away camp. Time and experience will shape her path, but I am committed to helping her become a self-sufficient adult.

I am grateful to this fellow mom for taking the time to speak with me. As much as I want to keep my daughter in a bubble, I know that it would be detrimental to her development and quality of life. Thankfully, I have a strong support system that continues to grow and provide assistance in raising my daughter to become her best self.

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