What We Need From the Grandparents of Our Son With Autism

So you realize he’s “different,” and everything we’ve been telling you is, in fact, true. Instantly, all the plans and dreams you had for him changed. You may not have said that out loud, but we can tell by your absence. Don’t worry, we understand.

It might not be OK for you right now or may be even ever OK with you. Trust me, we know how you feel. It took us awhile to accept that he may stand out in the world. All the dreams we had for him suddenly seemed clouded after we received his diagnosis. It also took us awhile to realize he’s still the same lovable kid we met the day he was born. Nothing, not even an autism diagnosis, can change that.

There are days when we can’t even think straight. We have all these thoughts going through our minds at once causing us to be confused, frustrated and emotional at times. As I type, tears fill my eyes. Why? I’m not even sure why, even the trivial seems insurmountable at times.

Every day we push on even when we think we can’t. We make ourselves get up, tell each other to take one step at a time and it’ll be OK. People say that you have to take care of yourself before you can take care of others, but what they forget to mention is how you’re supposed to do that. How do you do that when your son needs you and you are his main advocate? After juggling work, therapies, family time and anything else he needs, there’s often no time in the day left for “me time,” let alone “us time.”

Before the sun even comes up, we’re up and starting our day. Our day doesn’t end until he closes his eyes for the night, and this is just his first attempt at sleep. He’ll be up in a couple of hours, and we’ll try and put him back to sleep. He’ll wake up two or three times a night. If he doesn’t sleep, we don’t sleep.

He also has food issues because he has sensory processing disorder in addition to autism. It can be challenging for him to socialize with other kids and he has sensory overload if we are in a public place for too long. He’s nonverbal right now and gets frustrated because it’s hard for him to tell us what he wants or needs. When we hear other kids his age talking and calling out to their mother or father, we feel a lump in our throats. What we wouldn’t give to just hear his voice. We hold back our tears and remind each other how far he has come since his diagnosis and we hold onto that like gold.

Why am I sharing this with you? I’m sharing this with you because we need you. We may not ask or express our need for you, but when you are there, it makes a difference. We need your understanding, your presence and willingness to listen without judgment.

This may be a lot to ask from you, and you may not know how to do this for us, but we’re asking for you to try. We also didn’t know where to start when we jumped on this amazingly complicated journey, but we jumped in because we didn’t want him to be on it alone. We would and will do anything for him because we are his parents. I’m sure you know how that feels, right?

I guarantee you if you jump on this journey with us, you’ll explore a world that you could have never imagined. He has taught us so much already at his young age. His smile and laugh can light up a room. He’s funny and smart and marches to the beat of his own drum, and that’s OK because he allows us to watch with amazement and cheer him on.

Sure, there are bad days, but the bad days are overshadowed by the good days. So I don’t think he would mind if you joined in on this journey with us. What do you say? Ready for an adventure?

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.