I am a special needs sibling (SNS) and the oldest in my mom's family. I already know it will be my duty to take care of my sister, April, once my mother leaves earth. I am not looking forward to the day that it'll happen but I am well prepared. As an ex-family resource coordinator and licensed future care planner for individuals with disabilities, I learned the importance of being involved in April's life. Here is a short list of suggestions that every SNS should know.
1. Your siblings routine
It is important to know your sibling's routine because it is a part of their daily life. Periodically ask your parents what your SNS like to do throughout the day. Having a schedule with a time frame will benefit you tremendously in case of an emergency. It also helps if you or your parents are in an unexpected situation and a close friend or relative has to take your place temporarily.
2. Your SNS likes and dislikes
Finding SNS likes and dislikes will help in avoiding petty problems. It takes time to get to know what someone is keen too and no one knows better than the parents of children with special needs. If you are no longer living in the household with your SNS, it is best to have a log of things that will comfort your sibling. If they hate the color red, you need to know. If they enjoy a specific television show or music genre, you need to know. If they hate/love certain food or dislike a specific person - you need to know!
3. SNS medical information
It is critical to know your SNS medical information. The doctors they visit, SNS medication, allergies, medical equipment, and medical directives are essential. You need to know where to purchase products and the SNS service providers information and case manager.
4. SNS personal information
You need to know where to locate SNS social security number and their parent's information (especially if you have a different mother/father). Write down your SNS clothing size (including undergarments if they're an adult), shoe size, and products they use daily. Don't forget to keep up with activity centers or camps SNS attend - they have friends too and staying in contact with them is important to their social life.
5. A future care plan for your sibling
We don't know what the future holds; however; we can take care of ourselves and make adjustments. We have survival skills that we've learned throughout our life; however, our SNS may need help that area. Your parents should let you in on the financial responsibilities of your sibling such as special needs trust, housing, direct care support, case management, waivers, insurance and burial information. If you work on the plan with your parents and your SNS, the process will be easier. Keep in mind at all times that you and your parents need to keep the decisions person-centered. Do what you think is in the best interest of the SNS from their point of view and not just yours.
And the most important rule to all of these suggestions includes writing the information down/documenting it and saving it to USB, cloud, folder or printing the information and keeping it in a safe place or with a close friend. Remember to keep a list of relatives or close friends you can count on to stand in your place in case of an emergency and don't forget to tell them where the information is located.
Finding ways to bond with your sibling can be challenging. My sister, April, was diagnosed on the Autism Spectrum in the late 90's when there was little information about the disorder. It has taken years for me to find the perfect bonding situation that satisfies both of our needs to embrace each other.
Even though April has unique needs, she is her own individual and overall has characteristics of a typical young lady. She likes to sing (in her on style), dance, eat, and watch movies. She enjoys her own space and is easily agitated when things are not going her way. Throughout the years our relationship has influenced my life decisions tremendously, including my career choice in the nonprofit sector.
s a semi-awkward person, it has been a journey for me to interact with ordinary people and a significant struggle to bond with April. For many years I thought it didn't matter to her if I visited because it seemed as though she didn't care. I often questioned my decision to make the drive to Lufkin just to sit there and watch her swing and gaze at the building in front of her. I brought my younger kids to help make the family time together easier, and I felt it was necessary for her niece and nephew to know that special people exist within and outside of our family.
One day it dawned on me what my sister liked to do when she lived at home. I remember how April loved looking in the mirror and getting her hair braided. My mother would always braid her hair, and this was the only thing that calmed her besides Ramen noodles. I decided if I was going to spend 2.5 hours driving to April I should do something that she truly enjoys. I began to watch YouTube videos dedicated to hair braiding and extensions. It was a process, and I am lucky that my 7-year-old daughter didn't mind me using her for practice. Once I got good at it, I decided that this would be our bonding experience.
The next visit we met my mother and aunt at April's home, and that is where the magic initiated. My mom wasn't sure about it at first, but eventually, I won her over. I started braiding April's hair by making parts, separating her natural hair and adding synthetic hair. It took some time, but she was still and calm. I finished 2 hours later, and everyone was in awe.
"April you look so pretty!" said one staff member. April just smiled. She was happy. The happiest I have ever seen her and so was I. Finally! The hair braiding created a bond between us where I didn't feel like I was bothering her or being useless and most importantly she was HAPPY. I took pictures, and she smiled, my mother smiled, and I smiled.
It finally made sense to me - even though she has a disability she wants to feel pretty. Just like every woman I know.