Raising A Great Special Needs Sibling

The biggest life change between having kids and not having kids is that suddenly everyone has questions for you. You go from virtually being ignored in society to being expected to have answers.

How much did she weigh? How much does she eat? Does she sleep through the night? Did you get her checked for whatever medical thing? Who in your family has curly hair? Who in your family has brown eyes? Did you know there’s spit-up on your shirt?

They come at you fast and furious. It’s a rapid-fire parental quiz from the start and then, just as you get used to the steady stream of interrogations, your baby grows up… and starts to ask questions of her own.

Is bacon a food? Where go the raviolis? What do I have in my shoe, Daddy? Cars in the streets cookies, Daddy? Daddy? Cookies?

Tons of weirdness like that follows. You smile and offer lot of wide-eyed responses of “Wow. OK. Let’s finish lunch and then we can ask questions.” It beats, “I have no idea what you’re talking about, toddler.”

Then, my little boy arrived and threw all of that into a massive tailspin. Today, Lucas is ten, non-verbal, and has autism. But, as a baby, he wasn’t yet labeled as anything except for a baby. That baby brought the same old questions from family, friends, and professionals. They were like the others at first. Then, as his missed milestones started to become widely apparent, the questions changed.

I had no answers.

I didn’t know why he didn’t talk and couldn’t understand when he would. He was delayed with walking and balancing. He didn’t play with traditional toys or react to people in the way that they were expecting. There were high-fives left hanging and unreturned “hellos” from waiters. Everyone looked at me when those things happened. I looked back. I had nothing to say about the fact that he had nothing to say. All I could do was feign an expression of nothingness.

My daughter was about three during this time, and she had questions of her own. I worried deeply about that. In my head, her brother was a complete mystery. I was struggling to explain him to myself, much less a tiny preschooler.

The worries about Lucas were across a wide array of areas. Predominantly, I was concerned that he would one day start talking, dancing, and doing trigonometry. When that day came, he would be angry at me for telling people he had special education services. To me, it was about his own privacy. Truth be told, however, I don’t know what I was thinking. My brain was so scrambled and I felt like I had to just accept life. Things were happening and gripping onto thoughts like this gave me a small feeling of control during a time when the walls were crumbling down.

There was a definite crossover moment in our lives around two years old as it related to family-wide autism acceptance. As a joke, I would narrate my infant son’s thoughts like a puppet during his debut years. It was a cute thing I did to get a giggle from my daughter and involve him in our discussions. I have him a “Hiya ‘dere, bub” voice that sounded like it was straight out of an old-timey gangster film. In the morning, he would see his sister and I’d ventriloquist his reaction.

Hey yo, Sis. What’s doin’? You angling for a little bit’a da breakfast ‘dere?

My daughter would laugh. He’d smile. All was adorable.

This went on from the day he was born until one one day when it no longer seemed appropriate. The time for his first words had come and gone, so portraying his thoughts with my own voice was no longer cute. I told her I wouldn’t be doing the voice anymore and I could sense her disappointment. I remember feeling guilty for stopping, but also guilty for ever doing it in the first place.

I know it’s fun to hear, but Lucas is old enough to start finding his own voice. I don’t want to do it for him. He has to learn to speak and, at least, express himself.

She nodded and life moved on, content with the explanation I gave. I always made sure to do that. His behavior and development were there for all to see. She was a part of it, just as he was a part of her life. No question was wrong on her part and nothing was ever off-limits. Knowing her brother didn’t speak wasn’t an insult, it was a fact. We didn’t need to pretend he was anything other than the wonderful boy he was then and is today. If she had a question about it, she could ask. We were open then and we’re open now.

Eight years later, he doesn’t have words but his communication device, hand gestures, and PECs allow him to share his needs with the family. We found his voice and, even if his vocal words never come, we know him, love him, and accept him as an equal part of our family.

His place in our home is solid and symbiotic. His sister hasn’t suffered from his presence or needs. His behaviors, while unique when others are around, are completely normal behind our doors. She not only loves and cares for him, but she accepts the things he can do and the things he can’t. She knows that she’s prioritized on the same level he is – not above and not below.

Taking away his iPad and making him dance around the basement with us is something that we all enjoy. We don’t force Lucas to participate when it might cause a meltdown or make him unhappy. There is no mandatory fun. We all have to be on board. Pulling him from his little world to play with us because “it is what another ten year old would do” isn’t the way we go about it. It has to work for him the same way it works for us. If it ends with him crying, we messed up.

By the same token, when his sister has an event to attend, a concert to play, or a gathering to take part in, he comes along for the ride. He might need a device with him or a means to find an escape if things get monotonous, but he does it. We make it work. If it ends with her unhappy, we messed up.

That line has been hard to walk, but I’ve tried. It’s lead to some difficult times for me, especially in their younger years. There have been girl scout Christmas Tree lighting ceremonies where I had to chase a manic running three-year-old up and down the halls while another parent helped her hang ornaments. I’ve carried him from restaurants that he’s fallen asleep at so that she could celebrate a good grade with a sundae. I’ve endured biting fits so that she could get her school clothes. I downplay his actions and make sure that she sees what’s truly important – he makes the same effort for her that she makes for him.

Because of that, their relationship is everything I wanted and nothing like I ever could have dreamed of. He’s made her a better person. Hell, he’s made us all better people and we’ve done the same for him. That’s what a family does.