.png)
The extraordinary impact of the special needs child on the entire family system is not only a professional interest and specialty of mine, but a very personal one. The sibling of the special needs child has a unique journey of their own with a great deal to offer in exploring the family dynamics within these complicated journeys of special needs parents...and the siblings.
I will never forget when we took my special needs daughter to NIH (The National Institutes of Health) to participate in their UDN (Undiagnosed Diseases Network) study. I was not planning on bringing my older daughter, who was 14 then, but Hurricane Irma was about to land, and I brought her along with me. When I arrived and explained the situation to NIH..they responded with, "We're glad you did because she is a significant part of our study!"
NIH even offered to give my daughter a session with a counselor, knowing how difficult it can be. My daughter agreed, and after an hour with the counselor, she came out of the session with a statement I will never forget: "It was great, mom. I loved it and want to talk with her again. The best part was we never once talked about my sister." And I thought to myself, "wow, that therapist knew what she was doing," and I learned many great lessons from our time there.
MY DAUGHTER'S STORY
My now 19-year-old daughter provided the following answers to my questions. She has permitted me to share her answers, and I am grateful to her for sharing her raw and honest thoughts and feelings. I am most thankful to her for being the amazing young woman she has become. This life is far from easy, and as difficult as it has been for her, she has chosen to learn, grow, and blossom from it.
What’s the first thing that comes to mind when you think of your life with your sister?
Challenging. Not as much in a literal way, but more in the sense that I have had to work to accept that she is the way she is and that I won't ever have the normal sister relationship my friends or peers have.
What was the most challenging part about it?
I didn't feel like I could have anybody meet her or be around her easily. It has also been challenging to see how it has affected my parents since having a special needs child is very tough.
What are good things that have come from it?
I have gained a good sense of patience that I have utilized in other aspects of my life and found appreciation for "sonder," which means "the realization that each random passerby is living a life as vivid and complex as your own." In other words, it has allowed me to open my eyes to the reality that everybody is going through their own struggles and challenges, no matter how big or small.
How has it impacted who you are today? Your friendships/relationships?
Overall, I consider myself to be a very loyal, compassionate friend and person. I take into account that my friends or peers may be going through things affecting their personal lives and therefore, I easily accept people for who they are because I don't know what has been going on in their lives to make them that way. I have become more understanding and empathetic by experiencing my own challenges with my sister. However, I have also become very detached in some cases, as I can tune things out very easily from having to tune out tantrums or other incidences with my sister frequently. This can be a good or bad quality; it depends on how I use it.
What advice do you have for others your age that struggle with this reality?
You need to live your life how you want despite these struggles because it is YOUR life, completely separate from your sibling's and anyone else's. The challenges in your life don't have to define you because life is simply what you make of it. Of course, it is necessary and okay for you to address and come to terms with this part of your life that you may not ever want to highlight, but don't let it be the key factor that determines who you are and how you choose to live.
What helps you cope with the natural stressors that accompany this family lifestyle?
I try not to compare my family dynamic to anyone else's because the grass isn't always greener on the other side. Every family has issues, whether bigger or smaller than my family's, and things could always be way worse. I also cope with stressors by finding healthy outlets, such as working out or channeling my creative energy.
What do you hope for when thinking of your sister’s future? What role do you foresee yourself playing in her life as you think ahead?
I hope my sister will always remain happy and innocent throughout her life and end up in a place that will take good care of her sweet soul, as the reality is that she will not be able to live with my parents forever. As I think ahead, I am sure I will keep my sister in my life to an extent; however, I cannot say that I would ever hinder my future by taking full responsibility for her.
Anything other thoughts you’d like to offer?
Overall, I have felt lucky to be such an optimistic person naturally, as people who are not as prone to optimism would likely struggle with this scenario differently. I don't want to sugarcoat and say that I would choose this situation or that I am thankful because the reality is that it just…sucks. It's hard. There have been days where I don't have much sympathy for my sister, and in those difficult moments, I have felt like she has ruined my life in certain ways. However, this doesn't mean I don't love her.
The funny thing is that I'm sure there are perfectly normal siblings out there who feel the same way about each other, because who's to say she wouldn't have made me feel the same way by being totally normal? You must work with what you get and accept your life in all aspects, even the difficult ones.
