Helping My Nonverbal Son With Down Syndrome Forge His Own Identity

The Dilemma

On a cool winter day in San Diego, my wife and I are likely to disagree about what our 13-year-old son Bobby should wear to school. She tends to feel the morning chill and so wants him bundled in a heavy jacket and hat. My temperature runs hotter so I see nothing wrong with sending him off bare-headed in a lighter cover.

In many families, the 13-year-old would be the tiebreaker, deciding for themselves how to dress. However, Bobby has Down syndrome and is largely nonverbal. He will not express a preference. Because he doesn’t speak up for himself, my wife and I each project our own desires onto him.

Now, really, it doesn’t matter much whether or not he wears an extra layer to school. He’s going to be fine either way. But if I’m not careful, my projections will impact far more than his choice of clothing. I am aware that my preferences and beliefs about his future can overshadow his drive to independence.

Life With a Nonverbal Child

While Bobby’s receptive language is quite good, his ability to express himself is limited to simple two and three-word phrases. Attempts to augment his speech with sign language or assisted communication devices have yielded disappointing results. Moreover, even when he has the language to express a preference, he often opts out of doing so. He almost exclusively answers “yes/no” questions with “yes” and, given the choice of two options, will often choose the one that is presented last.

The limitation doesn’t mean we don’t know the basics of how Bobby views the world. He hops with joy when entering the school building, giving us confidence that he enjoys his time there. He resolutely ignores us when we instruct him to let the dogs out into the backyard, thus indicating his displeasure with his household chores. He lets himself be known through an array of non-verbal communication.

But this only works for the simple stuff. Nuance is lost when communication is so simplified. He can’t tell us if he’s being bullied or harmed when we’re not around — a topic I’ve previously addressed here.  We struggle to discuss issues that require long-term planning, such as his wishes for his future. I often catch myself planning without his input. Having a nonverbal child requires both a lot of extra vigilance in keeping them safe and restraint in terms of guiding their life.

Living Life in the Moment

My son’s school recently hosted a winter festival, held after hours. Because the district does not provide aides at extracurricular activities, Bobby did not have the support he needed to attend.

The exclusion angers me and so I am considering whether to bring it up at Bobby’s next IEP meeting. The rub? Bobby would likely be both overstimulated and unhappy at such an event.

Because Bobby and I cannot discuss more abstract issues — in this case, the benefit to both him and his classmates of him being included — I often make decisions based on what will make him happiest in the moment. There’s a beautiful simplicity and wisdom to living this way, but the model sometimes fails.

For example, in this instance, the live-in-the-moment strategy would be to not push Bobby to attend the event, ignoring his exclusion and letting the district continue its prejudicial policy. Bobby would be happy but the downside is obvious.

My other option is to try to explain to Bobby the importance of being included so that he understands that his attendance at extracurricular activities benefits him in the long run, even if he does not love the activities themselves. This satisfies my longer-term goal of ensuring that Bobby can navigate a variety of social settings, but the tactic also has a major downside.

Because I can’t have a two-sided conversation with Bobby, I have no way of knowing how much of my argument he would understand or agree with. The older he gets, the more say I believe he should have in how he spends his time. Should I send him to an event he will hate if he doesn’t care about the inclusion component? Is inclusion even meaningful if he is unhappy and distances himself from those at the event? By introducing the topic, am I creating dissonance for him where no conflict currently exists? Should I just let him happily continue his schooling as is?

Oh, what I would give to be able to talk to Bobby about any of these things.

Adulthood

Looking ahead, I have concerns about how best to navigate adulthood with a non-verbal man. I expect Bobby’s speech to continue to improve in the coming years, but don’t anticipate a dramatic change in his ability to communicate complex ideas.

I have no shortage of preferences for what Bobby’s adult life will look like. I’d like him to have a job. I need for him to live as independently as possible, especially because there is a reasonable chance he outlives both my wife and me. I want him to have relationships — romantic and otherwise. But more than anything, I want him to find his own path, creating a life that’s meaningful for him, not one that I’ve architected.

In my perfect world, Bobby would be able to communicate his hopes and dreams to me and I would help him negotiate the world accordingly. I’m coming to terms with the fact that this may never happen. Instead, it will fall to me to present Bobby with an array of opportunities and guess which of them are most fulfilling. With his long-term future in mind, I will choose a living arrangement for Bobby that is practical, but who knows if it will be his first choice? I will rely on the occasional non-verbal clue to make decisions that really deserve a long conversation.

Conclusion

Every parent projects at least some of their hopes and dreams onto their child. It’s part of the territory. In the ideal circumstance, the child grows into an independent adult, retaining what is useful from their parents’ expectations and disengaging from that which does not resonate. The child becomes the product of their own desires.

Because Bobby is nonverbal and because he has other challenges which impede his independence, there is a serious danger that his adult life will be constructed from my imagination, not his. It is the last thing I want for my beautiful son. So, my pledge to him is that, to the extent possible, I will look for his leadership as we build his life together.

Can you help me? How do you help your child forge their own identity?