Stop wasting energy on things you have no control over, it literally is the biggest brain drain out there.
By Natalie Breen
Someone recently asked how my life would differ had I not had a brother with a disability. I can tell you honesty, undoubtedly, genuinely – it would be way less exciting, less interesting, and unfulfilling.
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 a few 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, twenty year old and then his subsequent behavior is “unruly” and “weird” his lack of eye contact is “rude and disrespectful”. You set certain expectations of someone the second you look at them and when they fail to meet those, you make judgements. 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 okay)
I once told a journalist that receiving an Autism diagnosis is similar to hearing your best friend 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. 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 me).
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 (okay, exaggeration) – point being, I like control, I like having a plan, I thrive off of organization. With a disability, you often lose that. You don’t know what milestones your child will hit regardless of how much you 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 literally 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”.
Natalie Breen is founder of AutismWorks in Boston. Autism Works was created to aggregate resources other families may find helpful, encourage discussions, share stories, and help everyone live their life to the fullest. Natalie, 22, graduated from Suffolk University in 2014 and works at Hubspot in Cambridge.
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