I had to learn that I wasn’t living in my brother’s world of special needs. But rather his world was mine, and mine was his. We were adopted into the same family, and each of our individual stories were a part of the same mosaic.Rebekah Johnson
An Indian Premature Baby
Four years before me came Justin, my parents’ first child, adopted from Calcutta, India. He had the cutest curly black hair, wide grin, and big dimples.
Around the age of two years-old, Justin was diagnosed with mental retardation. Scans of his brain indicated the likelihood that his birth mother suffered from starvation, not providing enough nutrients for the development of Justin’s brain. He was born several months early, and his survival was a miracle.
Justin’s Special Needs
Justin is now in his mid-thirties, and still living with my parents. He can understand conversation at the same level as a very young child. He will respond and communicate with mostly “Ya” and “No” for “Yes” and “No” as well as sounds with different vocal intonations to communicate if he’s happy, excited, frustrated, or sad. He can say “Daddy”, “Mommy” “Lowes” “Powa Mowa” (Power Mower), “Baby”, and “Sha” (for our dog, Shaxx).
Justin will point to places he wants to go in local paper advertisements from the mail and as they pop up in commercials on TV. He loves to watch Nascar Racing, Golden Girls, Home Improvement, Arthur (the Aardvark), and Cops.
Justin loves to be helpful by pushing the cart while grocery shopping. But, he lacks fine motor skills to make the zipper work on a jacket, or to cut his food into smaller pieces.
Every Sunday Justin follows my dad in the yard with a white gardening push-cart as Dad mows the front lawn. Usually after lunch on the weekends, and after his job coaching on weekdays, my parents will take Justin to Lowes’ and or Home Depot to find the lawn mowers as well as the latest sales featured in the weekly paper advertisements.
Justin is very sweet, and will take your hand to give you his grand tour of our local Lowes’. He is also very mischievous and will hide your precious belongings. And unfortunately as he gets older, his memory isn’t always the greatest because he will giggle at the thought of hiding your things, but look puzzled, knowing he forgot where exactly he hid your things, whether in the trash, the refrigerator, or thrown behind the couch.
Justin will always need full time supervision and care for the rest of his life.
Being Justin’s Sister
I grew up in the tension of my own feelings about my family.
I wanted to feel justified when my brother tore the heads off my Barbie dolls, but found myself being told, “He doesn’t understand. You can’t yell at him.” R. I. P. Malibu Barbie and Ken.
And in wanting to feel justified, I felt the tension of also feeling selfish for even wanting to defend Barbie in the parental court of law known as the dining room kitchen table. After all, Justin could never state his reasoning. It wasn’t even a fair fight. But I knew by his giggles over my reactions that to some degree, he both understood and enjoyed his sibling crime against me.
I felt a great amount of compassion towards Justin, for seemingly obvious reasons. I learned how to patiently help him with simple things like opening a jar, or popping the plastic lid onto a soft drink at a fast food restaurant.
But in my compassion, I also witnessed my parents’ struggle in helping, raising, and figuring out new methods to support Justin. I grappled how much I should share in their struggle. I was my parents’ daughter, but as Justin’s sister, I also felt a sense of responsibility for my brother. When Justin would have bad days of screaming at the top of his lungs, I felt the tension rise up within.
“Should step in and help (if I can help at all)?”
or “Do I deserve a sense of peace hiding out in my room?”
As a teen, I my heart was camped in the strange limbo between compassion and what felt like selfishness. My heart was with the daily struggles of my family, but it also longed to escape to the world of school, my friends, or heck, even just to go anywhere by myself just to understand who I was outside of Justin’s world.
When my father said I should go away to college, I questioned how far away I should go, wondering if at any point I would need to come back for the sake of helping with my brother as my parents aged. After college I lived across the country for a decade, feeling both the need to follow a sense of calling, but also feeling the tugs of the family calling me home.
I eventually realized that following the sense of calling I had on my life was important. While I lived in Justin’s world, he also lived in mine. And it became important that I succeeded in what I was called to do for my own sake, but also for his. As his sister, I needed to not go out of my way to limit myself because of him, but be the best version of myself, living out my life’s purpose because in doing so, I would become the best sister I could be. I would be stronger for my family. All the education and experience I gained has deepened my love for my brother, and prepared me for whatever is next in our lives.
I had to learn that I wasn’t living in my brother’s world of special needs. But rather his world was mine, and mine was his. We were adopted into the same family, and each of our individual stories were a part of the same mosaic. While I understood the beauty of Justin’s story, it was also imperative that I lived out my part of our family mosaic, not feeling that my piece of it was any less valuable.
And that’s what I want to share with you today. That no matter who you are or what role you play in your family, you are valuable. Your success and your purpose in life is important. When you succeed and follow that which makes your heart pitter-patter, what I believe God has called you to do, it gives your family joy and hope. When every part of the mosaic is seen, lit up, and valued, that’s when the world sees glory in your story.
Below I’ve included practical ways to love a family like mine, and how to speak this value into their lives.
How to Love My Family
For my parents, their role is love and care for their children. And they’ve done an amazing job. Not once has my mother or father ever asked for a “break.” They are saints and superheroes who love their children fiercely and compassionately.
The best way you can love them, is to encourage them to keep flying, but also give them time to hang their Super-Human capes. Though, it might not be in the way you imagine.
When we were still growing up, my parents had time for nothing (like all parents right?). But seriously, nothing. As Justin’s needs became more complex, they couldn’t book babysitters. I was younger than Justin, so I couldn’t watch him. The only free time my parents had to themselves was for the hour and a half they dropped us off at our classrooms at church.
In light of this, parents of special needs kids need loyal and understanding friends. They don’t need friends that expect them to drop everything and come out at a moments’ notice for dinner and drinks. Finding a babysitter is not that easy. They need people who understand that their time is precious and often full of appointments and complicated school and transportation schedules. They need friends who take the little bit of extra effort to meet them in their world, but don’t have high expectations for them to participate in every activity of everyone else’s.
You can love my parents by strategically drawing them out to activities that promote self care. Simple things like getting a manicure, a massage, or even going out to a meal can seem like more trouble than it’s worth when you need to figure out care for your child. As a caring friend, you can figure out the family’s schedule, and meet the parents to go for a walk or out to lunch. These simple self care activities could be the thing that helps the parents put aside their worries for the sake of their health, even if only for a few minutes at a time.
While it was not always possible for my parents, you can love the parents of a special needs child by offering them an opportunity for a date night out, a date night in, or simply being in the home with them to watch their child while they relax or get chores done they don’t normally get to prioritize.
You can love the parents of a special needs child by cheering them on every chance you get. Whether through notes, small gifts, verbal affirmation over the phone, or a quick text. The simple reminder that they are not alone can easily brighten their whole day.
For us siblings of special needs children, you can love us with genuine and intentional verbal attention. Ask us questions about goals and dreams. Get us to think beyond our family life because often, our thoughts are wrapped up in our family. We are fiercely independent, so it might not always appear that we need you. We might be more withdrawn and trying to claim our own space in the world, but our hearts are still tied to what goes on at home. So, give siblings the opportunity to know that you are listening and care about them.
Being a sibling of a special needs child can be lonely. They also need loyal and understanding friends! There aren’t many if any other friends who can understand their family dynamics. And for me, my little time with friends was also connected to my brother’s more complex school and transportation schedule. So, I appreciated my few girlfriends who understood our family situation and never made me feel bad for not being able to go somewhere because of my brother.
You can invite siblings to social time.This also gives their parents’ the concentrated time they need to take care of their child with special needs. You can simply provide a means of interaction with people outside of their family unit, helping to break the stigma that their world has to revolve around their family’s special needs.
For Justin, the child with special needs, you can love him with a smile. When you see him and are puzzled by his appearance, relax your face into a smile. As a family we’ve seen plenty of giant eyes and wide open mouths of stares, so it helps if you fix your face quickly. It will help us feel more comfortable and trusting.
Don’t be afraid to say, “Hi.” Justin will probably respond back, and be instantaneously excited that someone interacted with him. So let your words be energetic, kind, and genuine. Otherwise, a silent smile will do. Many special needs children may not fully understand every word you say, but they will feel your tone and intent. They will best respond to the warmth of your interaction.
Be patient with us when standing behind us in line at Target. We move slower. Not just at Target, but also Walmart, but also walking down the aisle at Costco, and everywhere else. We don’t move as fast because we can’t. If you like, walk slow with us, smile, and be the human that breathes and chats with us for a moment. Again, genuine friendships can be hard to come by, so a few kind words can change the whole trajectory of our day.
Love us as you want to be loved. I’m sure whether or not you have a special needs child in your family, you need many of the same forms of love that you just read above. So, let’s practice that kind of love for each other, however we may meet.
To my families reading with special needs children, know that you are not alone. I pray that you would not only find the physical tools and help that you need to love your family, but that you would also feel the love and support from family and friends. I pray that there would be people who boldly enter into your world whom quickly become cornerstones in your life story, your mosaic.
And I pray that when people offer love to you that you would not be too proud to accept it. Go on date nights. Go out for lunch. Remember that the best gift you can give to your family is a healthy you, full of life and love to keep pouring out. Take time for self care. Do not shelf your dreams or the life calling that is still knocking on the door of your heart. Do not give into the lie that accepting love for yourself or pursuing your dream means that you are neglecting love for your family.
And for my Mosaic Readers committing to love my family and those other beautiful special families around you, thank you for being a part of our Mosaic. We are thankful for you.
With Gratitude, Rebekah “RJ” Johnson
One thought on “How to Love My Special Needs Family”
I love the way you told the story of your brother, Justin. I had to smile when you wrote about Justin hiding our things and giggling about it.