Sibling Revelry

“If you want to know how to treat a child with special needs, look at their sibling…they will show you.” I have no idea who wrote this quote, but I really like the sentiment. At the same time, I hate the phrase “special needs” in terms of a specific population of people or description of my son, in particular. I get lazy and do use it because it is such a widely accepted term, but I don’t like it. None of us have needs that are otherworldly. We are all unique and special in our own way.  Those who have disabilities or learning deficits may require an extra level of support or accommodation, but whatever their needs may be – they fall within the realm of normal human interaction in a civilized society. There is no shame in possessing a disability or differing abilities, and many experts recommend using the term “disabled”. I’ve been pondering this issue for quite a while and haven’t come up with a brilliant new way to re-phrase or re-frame things, so I’ll save that endeavor for another time and move on to the bigger picture.

The most unexpected and jarring news I’ve ever received was delivered by a medical professional, but it was not delivered by the ophthalmologist who delicately informed us our infant son was blind. It was delivered by the ultrasound technician who nonchalantly mentioned two embryos as I was lying on the exam table at the high-risk maternal medicine center. She thought our normal OB-GYN had already informed us, hence the reason for our evaluation that day. In fact, we were there because I was over 35 and considered geriatric in pregnancy terms, and because I had needed an emergency c-section when our first son was born. In any event, we were floored, and she was mortified for so casually delivering such a shock to completely unsuspecting parents. I was stunned. I was completely overwhelmed. And I was beyond excited. Twins are always best friends, right? Don’t they possess some sort of secret, mysterious, unspoken connection, or communication?  These are things I thought to be true, and they are questions I get asked quite often. I always dread having to answer…no, not really. Not with all twins. Not with my twins. 

Sean was born with Norrie Disease and has been blind from birth. He was also diagnosed with autism around age three and is non-verbal and severely delayed in all areas. There is not a single, simple task that Sean is able to do on his own. Zach is his typically developing twin. He was born one minute before Sean. He is thoroughly obsessed with Godzilla. He loves to read.  He talks on and on and on…and fires off completely pointless questions all the time, such as “what are your four least favorite sports?” For the record, I don’t really like to watch any competitive sport other than swimming. Our oldest son, Will, is going to turn ten in July. He’s entirely too smart for his own good. He has a crush on a girl in his class named Tenley. He wants to learn how to play the trumpet next year in fifth grade band. My boys are all different, all special, and all actively contribute to my gray hair growth and my insomnia.

One thing I’ve worried about endlessly since receiving Sean’s diagnoses, is whether my boys will be close as they grow up. Will and Zach, for obvious reasons, can participate fully and unassisted in endless activities, while Sean can’t. I never want them to take that for granted. And we have recently started having those types of conversations with them. They know, of course, that Sean is different. They know what his disabilities are. But what we are trying to impress upon them is that they could have been born with disabilities, too. I debated for a long time whether I wanted to make this precise point with them.  I’m not trying to use Sean’s limitations as a weapon. I’m not trying to scare his brothers. And I’m definitely not trying to paint Sean’s life as a tragedy. With their young ages, I wasn’t sure if they would really comprehend what I was trying to teach them.  But they are smart boys and they do understand. They understand we are all unique. They understand there are many different types of disabilities impacting many, many people in our community and around the world – but that those with limitations are not less valuable members of society. They understand that, even if you are not born with a disability or limiting condition, you may acquire one at any point in life. They understand they possess abilities and talents Sean does not, and never will.  But most importantly, they understand he has gifts, too. They witness, daily, his sense of humor and his joy. They know how smart he is, and they see how quickly he learns. They get it. And they accept him for who he is.

My three boys can’t all sit down together and play a game of Uno or ride their bikes around the neighborhood chasing the ice cream truck. But they certainly do interact with each other, and Will and Zach have found ways to entertain Sean and have fun with him. They really light up when they see him smile and laugh. Sean loves to sit and listen to The Lion King movie, typically two or three times in a row. Will loves to sit and watch it with him. Zach loves to play with Nerf guns. When Sean hears the clicking sounds, he always reaches out for them. Zach has learned to share and give Sean a turn holding his toy guns so he can explore their parts and functions. Will loves to push Sean on the swing set. All three boys love swimming in our neighborhood pool and Will likes to hold Sean and help him float on his back. Both boys will bring Sean his favorite toys, one after another, until they figure out which he wants to play with. They help fill up his sippy cups with drinks. They hand him bowls of his favorite snacks – Oreo cookies, Veggie Straws, or Doritos. They understand his likes and dislikes. They understand his quirks. They understand what makes him tick, and what makes him meltdown. They are inclusive and they love him.

I hope their soft little hearts never change. I want Will and Zach to grow up continuously expanding their minds and loving their brother unconditionally. It has taken a bit of strategic work on our part, as parents, to help cultivate these relationships between our three boys – but kindness comes naturally to Will and Zach, and I hope they will continue to grow and model acceptance for others. They have been handed such an amazing gift in life. They have been given such an amazing teacher. 

~ Stephanie Brennell