What They Don’t Tell You About Working With Adults With Disabilities

I don’t remember the exact moment my life was changed by someone with a developmental disability. The memories seem far away, blurry, as if they don’t belong to me. But this is what happens after you’ve been working with adults with developmental disabilities for eight years. You change.

They don’t tell you that when you’re filling out your application. Instead, they tell you about the hours, the health benefits, the 401(k) plan, the programs and the strategies. But they don’t tell you about the fact if you do it right, you’ll never be the same.

They don’t tell you it will be the most amazing job you’ve ever had. On other days, it can be the worst. They can’t describe on paper the emotional toll it will take on you. They can’t tell you there may come a time where you find you’re more comfortable surrounded by people with developmental disabilities than you are with the general population. They don’t tell you you’ll come to love them, and there will be days when you feel more at home when you’re at work than when you’re at home, sitting on your couch. But it happens.

They don’t tell you about the negative reactions you may face when you’re out in the community with someone with a developmental disability. That there are people on this earth who still think it’s OK to say the R-word. That people stare. Adults will stare. You will want to say something, anything, to these people to make them see. But at the end of the day, your hands will be tied because some things, as you learn quickly, can’t be explained with something as simple as words. They can only be felt. And most of the time, until someone has had their own experience with someone with a developmental disability, they just won’t understand.

They train you in CPR and first aid, but they can’t tell you what it feels like to have to use it. They don’t tell you what it is like to learn someone is sick and nothing can be done. They can’t explain the way it feels when you work with someone for years and then one day they die.

They can’t explain the bond direct service personnel develop with the people they are supporting. I know what it’s like to have a conversation with someone who has been labeled non-verbal or low-functioning. After working with someone for awhile, you develop a bond so strong they can just give you a look and you know exactly what it means, what they want and what they’re feeling. And most of the time, all it boils down to is they want to be heard, listened to and included. Loved.

When you apply for this job, they do tell you you’ll be working to teach life skills. But what they don’t tell you is while you’re teaching someone, they’ll also be teaching you. They have taught me it’s OK to forgive myself when I have a bad day. There’s always tomorrow and a mess-up here and there doesn’t mean it’s the end of the world. They have taught me to slow down, to ponder, to take the time to just look around and take in this beautiful world and all of the simple joys we are blessed to encounter every day.

So when did I change? I realize now there wasn’t one pivotal moment. Instead, it was a million little moments, each important in their own way, that when added together changed me. And I’m grateful for each one.

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