The following article was written by Jen Sarkar for The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities. After reading this article about super sibs, I encourage you to explore their site which also aims to connect the health community.
When you and your partner start deciding to have children, your mind may start to dream up all of the different scenarios and directions your life may take you. Will you have all boys? Will you have all girls? Maybe you’ll have one of each. Or perhaps you guys are the one and done type of family.
The one thing you probably never dream up is what life would be like with a child with a disability. I can tell you this because I’m a mother of two (blessed to have one girl and one boy), and probably spent days daydreaming what our life would be like.
Four years ago our son, Carter, was diagnosed with a rare and fatal disease called Sanfilippo syndrome. Sanfilippo is a rapidly degenerative disease with no cure or treatment option at this time. On top of that, he also has chronic pancreatitis and in his short eight years here, he’s spent over 350 days in the hospital. A bit bleak, right? We try not to focus on the negatives because it’s a deep hole that is hard to get out of, but instead, we focus on all of the positives and live by Carter’s motto — live today, hope for tomorrow. However, I am not writing about Carter today. I am writing about our amazing daughter, Sophia.
Sophia just turned 10 and in her short decade here, she has dealt with more than most adults do in their lifetime. When she was younger, she was my partner in crime to all of our various doctor appointments. All the nurses would “sneak” her extra stickers at the end of our appointments for being such a good helper. At Carter’s speech, physical therapy, and occupation therapy appointments, she would do her homework and get caught up on reading. All of the other children who came in were just drawn to her. They would see her in our little nook and walk by; Sophia would stop whatever she was doing to smile at them, say hi, and if they wanted a buddy to play with until their therapy started she was more than happy to oblige.
Sophia has gone days with only having one parent at home because one of us had to stay in the hospital; she has even slept in the hospital with us a handful of times. When it was time to start in-home A.B.A. therapy, our supervisor asked if we had any questions, and I clearly remember this conversation. Sophia asked in the sweetest voice, “I do.” She went on to ask, “The stuff that you are teaching mommy and daddy, is it something I should help with too?” She was eight years old at the time, and to this day, I still get choked up looking back on it. Honestly, this girl has a heart of gold and is wise beyond her years.
I have always had a special place in my heart for children who have siblings with a disability, but it really came to light this past winter at the annual M.P.S. conference. I have seen many in our community refer to them as “super siblings,” which is exactly what they are! Seeing so many of them together at one time made my heart explode. They were playing with other siblings that were not theirs, engaging with everyone, and it was just a vision that genuinely fed your soul. If someone had a question on any specifics for their sibling, they had no problem discussing it, and were basically like a third parent.
When one of my favorite super siblings {besides Sophie, of course} Grey gave her presentation on her the sibling support website/network she created call the B.L.A.I.R. Connection https://www.theblairconnection.org/, I realized at that time just what a lack of support these children have.
These super siblings, brothers and sisters have access to so many various support systems such as special needs education, therapy, speech, behavioral health, etc. But what do the super siblings have?
From what I found out, many super siblings like their parents find comfort in one another because they know these other children “just get it.” They can speak openly with no judgment about feeling neglected. They can discuss or write about how their wants and needs come second and how they get frustrated with so many people coming in and out to help their siblings; because, at times, it can feel like a revolving door. Grey’s website dives into the lack of support for these super siblings, and I am so thankful for it. It connects siblings and creates a safe environment for them to have these conversations or discuss how and find support on how they may be able to start these difficult conversations.
I can only imagine how much they want to tell us but hold back in fear that it may upset us. Mental health is not just something for adults. Our youth deserve to have the light shine on them as well, especially when dealing with extraordinary stresses that come with a special needs sibling. With COVID-19 going on and schools closed for the year, these super siblings may have lost their one outlet of not being able to get a break from their sibling.
As a parent of a child with a disability and a typical child, I can tell you it’s challenging to balance.
I can honestly say our family could not do what we do without Sophia. She is the M.V.P. of our family, and we make sure to let her know that daily. She is happy to comfort Carter when he is upset. She continually helps us grab diapers or wipes when we have a messy explosion and is the first to pick out a movie she knows her brother will love for family movie night! However, she and many others deserve an outlet where they can speak their truths without judgment or fear that they will upset their parents. I hope other parents who may be in my shoes look for various things to help support their super siblings during these difficult times. I highly suggest you check out the B.L.A.I.R Connection so your child may be able to connect with other siblings who “just get it.”