This is a guest post by Radha Lath, who lives in New Jersey with her husband and two children. Radha is my sister. We grew up very close to each other – in fact, being only a year apart in age, we were convinced for the longest time that we were twins. I’m featuring a series of posts that she has written about living with autism. These posts give a wonderful insight into the mind of an autistic child through the eyes of a caregiver.
In my life as an autism mom, I see myself in my mind’s eye as carrying a (fashionably cute) backpack around all the time.
In it, I carry around, symbolically of course, both useful and not so useful things that have become my companions in this journey–patience, flexibility, acceptance, love, and even some guilt, grief, stubborn pride, and apprehensions about the future.
Most days I feel safe knowing my backpack is with me. It’s come to define me. Who would I be without it? I’ve been an autism mom for ten years and I’ve packed this bag myself, with my own hands, stuffed it full of what I need to stay cheerful and still be me. Even the not so positive contents need to be there. If I denied those thoughts, they would still haunt me in my sleep, or storm upon me when I’m beaten down. Might as well accept it all, and carry it as my insignia. I wouldn’t be Radha without all of it. I’ve earned the right to carry this backpack. All of you with special needs kids know what I’m talking about. I have fought a lot of external and inner demons with what I carry around in my pack.
Every so often, though, I set this backpack down. It always costs me a small pang to take it off, so snugly does it fit. But it’s crucial to take the occasional break and be a wife, daughter, sister, friend, and just my own person too.
We have semi regular babysitting, and we’ve done Bollywood movie nights, bookstore browsing nights, random-drives-just-because-we-love-to-chat nights, and theatre nights.
We’ve also done a couple of overnight trips–we took our other child to Six Flags,and we went, just the two of us, to a bed and breakfast in North Jersey–the less said about my raging pollen allergies the better. B and B in the mountains was not my finest moment! We have a planned overnight to the beach this summer, much better for Ragweed Radha.
We keep trying different outings, both to spend time as a couple, and to give our daughter different experiences and time with us. She is the best sister ever, and we do a lot of family activities, but she deserves the occasional ritual-free jaunt.
Now we all know that the backpack doesn’t stay at home. Hah. Of course I pack it in the car with me. I peer into it periodically when I text the babysitter to ask how my son is. I pat it affectionately when she texts me photos. I wear the guilt and shame when he is crying and I talk to her on FaceTime and we brainstorm about how to solve the problem. It’s usually sensory related, and easily solved once we get a look at him. But oh, I torture myself that I am not there! I wrap the scarf of acceptance around me when I forgive myself and admit, after a few hours of fun, that I miss him and want to go home.
Back home again, I wear my fashionably cute backpack again. I don’t always welcome it. It was nice to get a break from it. It felt good to have grown up conversation, and laugh without worrying that I will upset my son’s quietude. It was nice to focus on my husband for a while. And let’s just go on and admit that the little guy enjoyed the break from us too! We can tell from the photos of apple picking, from the remnants of his restaurant dinner on his shirt, and the happy shrieks when the babysitter plays with him.
And yet–we all merge back as a unit, our noisy, twitchy, darling son throwing himself at us for hugs, our family full of perfection and flaws, everyone needing to breathe in his beautiful smile, touched and entranced by how just being all together again fills him with nonsensical, manic happiness.
I do need to put the backpack down sometimes, and remember who I am. But I also need the breaks so I can experience all over again why I am so blessed. Such uncomplicated love that he has for us is a beautiful gift. Such complicated emotions that I carry around daily are my legacy as an autism mom. In this life, if this is what I was meant to do, this particular backpack is the one I was meant to shoulder, then I am a fortunate mother indeed.