Someone recently asked how my life would differ had I not had a brother with a disability. I can tell you honestly, undoubtedly, genuinely – it would be way less exciting, less interesting, and less fulfilling. Pat has taught me countless things over the past 20 years by just being Pat, and here are my top five:
1. If you can’t handle the truth, don’t ask.
One of the most unique things about Pat is his innocence and innate honesty. He means no harm, but has no filter. Lying is not something he is capable of, and that has gotten him in hot water more times than I can count. More than a few times I have heard, “Pat, are you excited to see me?” quickly followed by, “Not particularly.” I always laugh, thinking what kind of world it would be if everyone spoke their mind freely. Regardless, I always go to him for outfit opinions.
2. Not every struggle is visible.
You don’t have to bleed to be hurt. Autism is an invisible disability – even if you catch my brother flapping his arms or murmuring to himself, it’s unlikely you would know what was going on. This is both a blessing and a curse. To be honest, sometimes I selfishly wish my brother had a disability you could see, like you just looked at him and you knew. People are more accommodating, more patient, and more understanding when they know someone needs extra attention or leeway.
People look at my brother and see a 6-foot-tall, handsome 20-year-old, and then his subsequent behavior is “unruly” and “weird,” and his lack of eye contact is “rude and disrespectful.” You set certain expectations for someone the second you look at them, and when they fail to meet those expectations, you make judgments. I have learned that you never know what is going on in someone’s life and to go into each situation with an open mind. Disability or not, give them the benefit of the doubt. You don’t have to see it for it to exist.
3. The grieving process isn’t limited to the loss of a loved one (and that’s OK).
I once told a journalist that receiving an Autism diagnosis is similar to hearing that your best friend has died. Needless to say, they were speechless. Is it harsh to compare an Autism diagnosis to death? Maybe, maybe not. But you are grieving, and you are grieving a death – the death of the life you had imagined for yourself and your family. I was in denial, I was mad, I was upset … don’t feel guilty for feeling those things. It’s important. I still grieve. I grieve all the time. I grieve for the life my brother could have had, but I’ve cut it down to about a three-minute cycle because being sad and angry doesn’t do much good for anyone.
4. Miracles happen.
I know, I’m getting cliché with you, but I think parents of kids with disabilities need to have faith in this statement. You need to have realistic expectations, but you don’t need to have limitations. Your nonverbal diagnosis isn’t a guaranteed life sentence. The Pat today is different from the Pat of ten years ago, five years ago … six months ago. Nonverbal 1998 Pat not only talks, he sings (better than I do).
5. You cannot control everything that happens to you, but you can control how you react.
I am a planner. I make no less than ten to-do lists a week, half of my salary goes to Post-Its (OK, exaggeration) – point being, I like control, I like having a plan, I thrive off of organization. With someone with a disability, you often lose that. You don’t know what milestones your child will hit, regardless of how much time and money you invest; you don’t know if your Sunday morning errand run will be interrupted by a meltdown caused by “hard pants.”* Stop wasting energy on things you have no control over. It is the biggest brain drain out there. You don’t have to be an optimist every day of the week (but if you are, life is much more fun).
*Hard pants are what Pat called jeans; he only liked to wear sweatpants for years because the texture of other pants bothered him.
6. (Bonus) It never hurts to say “hello.”