Dealing with Disability as a Sibling

I don’t have a disability, but my brothers do. They are on the autism spectrum. Now, before you conjure up images of Shaun from The Good Doctor or Matthew from The Chosen, allow me to dispel any preconceived notions: my brothers are not savants. They are non-verbal and severely limited in their communication skills.

You might be thinking of adopting a child or children with disabilities, but let me make one thing absolutely clear: parenting a child or children with disabilities, developmental or otherwise, is hard. Let me say that again.

It is hard.

Yes, there are wonderful things and hard things about raising any child, but raising a child with disabilities is a different kind of hard and a different kind of wonderful. It requires a different kind of strength. I don’t know where my parents got their particular brand of strength, but they got it in spades. For twenty years, I have watched them raise my brothers. That’s another thing about my two brothers: they’re older than me by six and eight years, respectively. I have been an active observer my entire life of what it takes to raise two boys with autism. I have helped take care of them.

Because of my perspective, I feel at least somewhat qualified to tell you about some of the wonderful things and some of the hard things. I am going to share with you readers four pieces of reality: four stories about my brothers and me. Two burdens and two blessings, one for each boy. My purpose in sharing this with any potential parents is not to encourage or discourage your adopting children with disabilities, but rather to give you pieces of the puzzle to help you figure out whether or not it’s right for you.

I’ll go in order from oldest to youngest, burden to blessing, burden to blessing.

Deafening Burden: 

Bro #1: Drew. Where to begin? He doesn’t communicate hardly at all, but I feel that non-verbal is a poor description of his speech impediment. People with autism tend to do something called stim which means to self-stimulate. For my brothers, this seems to involve the release of excess energy through rocking back and forth or making noises. My eldest brother likes to make noises — loud, startling noises. 

To be perfectly honest, I’m not sure how to describe them. To the casual listener, they are disconcerting and annoying but to the trained hearer, they’re just annoying.

Mom, of course, has largely learned to block it out and recognize when the noises are happy, but Dad and I escape when Drew is at his loudest. Mom even calls it “singing.” Dad goes to his man cave in the outbuilding and I retreat upstairs and turn on music. I have to turn on music because Drew’s noises reverberate through the house. You can hear him anywhere in the house when he’s at his loudest.

What makes it so incredibly annoying can be exemplified by an experience I had a couple of months back. I’m in college and have been taking classes remotely which involve Zoom meetings. If that wasn’t annoying enough, I had to be downstairs because my Internet connection wasn’t strong enough to sustain video calls. That day, I happened to have a presentation.

Now, I enjoy the original, animated movie The Lion King as much as the next Disney fan, but my brother loves the songs and even though he can’t carry a tune, he was yelling right along with “HA SBENYA BABA BISEEBOBO,” but without the enunciation or any correlating vowel sounds. Here I was, about to give a presentation, and I could hardly hear my other classmates’ presentations of their Shakespeare speeches because of Drew.

Some of you might be thinking, “Couldn’t you just ask him to stop?” No. When he gets going, very little will stop him. So, after apologizing for his loudness, I rushed through my presentation at top speed with him yelling in the background.

Before anybody says, “You didn’t need to apologize for him, he was doing what he needed to do,” let me just stop you right there. You’re right, I didn’t need to apologize. But I wanted to. He was embarrassing me and I needed the class to know that it wasn’t my fault. I was frustrated that he just would not shut up. So, I apologized. I apologized for my brother who has never once in his life or mine ever articulated the words “I’m sorry” and not because he didn’t want to. He didn’t because he didn’t know he needed to.

Now, not all kids or adults with autism have this issue, but if you’re considering adopting a child with disabilities, you need to know what is on the table. With other kids, you can tell them to apologize to each other. I never experienced that. Mom may have told me to apologize to them once or twice, but she never asked them to apologize to me.

A piece of reality for you.

If you already have children without developmental disabilities and you adopt a child with disabilities, there will be feelings of unfairness. The child that is not developing normally will take up more time, energy, and brain space and no one can blame them for it. You will feel embarrassed by or for them on occasion but you can’t punish them for it. The utmost patience is required.

Blessing of Sibling Camaraderie: 

Drew is the only one of my brothers that I ever felt any form of sibling camaraderie with. Even though he can’t talk, I have been able to connect with Drew as a brother rather than a quasi-child. We’ll never reminiscence in this life about the good old days or our shared childhoods, but we have our moments. When I give him an extra cookie or another bag of chips, I tell him, “Don’t tell Mom.” I know he won’t tell Mom because he can’t, but I also get the feeling that he wouldn’t tell Mom because he’s my brother and I’m doing something nice for him. Then again, if he could talk, he might just rat me out like normal siblings do anyway.

We have our arguments, usually pretty one-sided, but he holds his own. One time, we were sitting next to each other in church and we were crossing our legs towards each other so our feet kept bumping. So, we did what any siblings would do: bash our feet together to get the other person’s foot out of our own space. Mom noticed and, in typical Mom-fashion, made me move and sat between us. Apparently, bashing each other’s feet to battle for space is not appropriate for church. But, it was one of the first times I felt like Drew’s little sister. I know we’ll be able to swap stories in the next life and I think he and I will have some whoppers to tell.

Another snapshot for you.

It may not be obvious how you can form attachments with children experiencing autism or other kinds of disabilities but the attachments will come, just not in the ways you might expect. Even if they can’t tell you they love you, you can feel it in their constancy. It’s something you have to learn to look for but when you find it, it’s wonderful.

If you’re looking to adopt a child with developmental disabilities, be prepared to form a unique connection with that child. It won’t be something everyone with kids can understand or even something everyone with special needs children can understand. I promise you can feel it and relish that connection.

Burdensome Grief: 

Oh, boy. Bro #2: Alex. There’s too much to say about Alex, on the burden and blessing sides of things. I’m going to go with the tearjerker. You’re welcome.

Alex passed away when I was 13 and he was so much to deal with (all the handfuls) that he was more like someone to take care of than someone to conspire or share with.

It was the only time I’ve seen my dad cry, and I mean really cry, not just a watching-a-war-movie cry. And Mom . . . I’d give anything not to see her like that again. It’s true: when Mom’s not happy, nobody’s happy. For months, we mourned his loss. I was the comforter; I was the strong one of the family. Drew continued on and I’m not sure how much he noticed but I was the one who told my mom that it wasn’t a nightmare, it was real, and it was somehow going to be okay. God granted me peace that night and every night since. I thank Him for that.

It’s taken Mom and Dad a long time to come to that same conclusion. I didn’t see a crisis of faith in either of them, but I know Dad’s hurt went deeper than he let on. I know he hated to see Mom like that too. I thought Mom would break; I guess she did. Somehow, she got put back together. 

The burden? The burden Alex left me was our parents. He wasn’t there to make them laugh with his giggles or his antics. There were no more new stories to tell about him, just the same old ones over and over again. He didn’t stay up late with Mom anymore; I did, at least after a while. He left a hole in our hearts when he died, a hole I couldn’t fill, much as I tried. But they needed time and I needed to be there with them. I needed to be patient.

Again, there’s that patience. I cannot stress enough how important it is to practice patience. Grief takes a long time to heal. It takes love, support, kindness, similarly situated people, friends, family, and, in our case, faith.

If you raise a child with severe disabilities, developmental or otherwise, there is a possibility that their lifespan will be short. I won’t ask if you’re prepared for that because no one is, but you need to know that is well within the realm of reality.

A Blessing Because of Grief: 

With that experience came confidence. I knew I had the strength to help sustain my family spiritually and emotionally. I knew my faith was bulletproof and I knew I could help Mom and Dad. I wasn’t a little kid anymore and I could be of service. I could help Mom and Dad move on, help them remember the good times, and pass over the tissues when the good times weren’t good enough.

I became strong enough to face whatever else the world threw at me because I beat the hopelessness of death. I found peace in the face of losing a close family member. I comforted a grieving mother and father and cared for a brother who probably missed his brother but could never voice it. I grew my faith by having successfully tested my testimony of God and His mercy.

That gift? That blessing? That is more than I ever could have asked for and the greatest gift a brother could give. I still miss him but I know he’s watching out for me, getting mad at those who make me cry.

There they are. Another couple of pieces of reality.

There’s a lot of pain that comes with raising kids. Some of the pains that people say parents should never have to go through are suffered by parents of kids with developmental disability. Because of that pain, those parents are some of the strongest people I have ever met. Their children are the kindest. Their families are somehow among the happiest. Because they live through some of the worst experiences life can offer, they can become the best people.

I’m not saying it’s a guarantee it’ll happen to you, that you’ll become the best version of yourself because you adopt a child with disability. I am saying that you will have the opportunity to do so and become such. It could break you but it could also make you.

With adoption, you have a choice. You can choose to adopt normally developing children, children with disability, or both. Whatever you choose, check yourself first. Ask yourself what you are willing to go through and what pains and joys you are prepared for. Whatever you choose, you are not alone. There are support groups and resources for all kinds of parents.

Those are some pieces of my experience with people on the spectrum. They change your life in unimaginably innumerable ways and it’s wonderful. And it’s hard. 

Consider carefully whether you want to become the parent of a child with special needs. What I’ve written here serves as my warning and my recommendation. I hope this gave you more pieces to the puzzle in figuring out how you want to become parents or add more children to parent.