Progress is not Success

sam_0137My Little Man has still, not received ABA therapy. We have known about his Autism for over 10 months now, got him diagnosed almost 3 months ago, but still, he is stuck in the maze that is insurance. He has, however, been able to have speech therapy for 45 min a week, provided by the State. I am truly grateful for his speech therapist. She understands him, tries to communicate on his terms, and never pushes harder than she needs to.

She was unable to come to us for 2 weeks, for various reasons. I worked hard at signing, even though he uses PECS (for the most part). But one day, while she was away, a light bulb clicked in his head. The sign for “food” became clear, and after i used it, he used it too. I squealed and clapped. He smiled, got on his tippy toes and shook his hands. I quickly gave him his graham cracker and waited eagerly to see if he would do it again. He did! I almost cried. He finally understood the connection. Later that day, he created his own combination of “more” and “food.” I almost fell off the couch. Later that same day, he rubbed his eyes and I said and signed “tired.” He repeated it. He also figured out “all done” in sign that day. That was a week ago. He has used them everyday since then, but hasn’t tried to learn the others I am showing. Whatever happened on that magical day, is gone, for now.

When I see people at my daughter’s school, they say “he looks so much better!”And “he’s behaving so well!” While I am thankful for the praise, it is also frustrating. He is performing socially acceptable acts, such as not pushing people when the poke him. He is trying to make eye contact. And he is signing for food ( I usually bring  a snack with me). But progress isn’t success. He is not “better.” I still don’t know what he is saying or wants 99% of the time. And by “saying”, I mean he makes the sound “eh.” That is his only sound. There are no others. No humming, no mmmm, nothing. While I am ecstatic about his progress in using signs, it is only a glimmer of hope, not a sigh of relief. He can’t survive in life by only signing “more food” and “tired.” There has to be more. It has taken him 4 months to be able to say that much. This small success is praise-worthy, but not success.

Saying he is better, give me false hope. And makes me angry. They are only commenting on what they see as good behavior. In fact, that is the one thing strangers always stay to me; “he’s so well behaved.” Did you expect him to be screaming and throwing things? Glad to know there is no Autism profiling. Autism or no, that’s not his personality. He is quiet and calm, and it takes a lot to piss him off (or an empty belly). Autism doesn’t mean the child is angry and out of control. He’s quiet, because he cannot speak. He is well behaved because he is too scared and cautious to go up to strangers. He isn’t better, your perception of him and what Autism should be, has changed, evolved. He has never thrown a fit, got angry, screamed, or ran rampant at the school. So what have you seen, that has made you decide he has changed? It’s funny how one of their comments after that, is usually; “that therapy must be working.” As a matter of fact, nope. He isn’t even receiving any. The only thing he has received is a wonderful speech therapist, and a mommy and daddy who never give up.

Everyday I try and learn a new sign language sign. Everyday, I try and sign to him (but it’s easy to forget when you are trying to figure out what he needs). Everyday, I play games with him, that push his mind, and yet have fun with him. Everyday, we do stim; where I bonk his head on the pillow, run him around, twirl him in the chair, and twirl with him in my arms. Everyday, I talk to him about everything I am doing, and treat him as an equal and wholly important person. I give up, I cry, I go to the garage and punch the punching bag, but I always come back to reality and try again.

What you see as success, is thousands of hours of hard work, pain, and sometimes rays of sunshine. What you see are tireless hours of effort. But that’s not really what you see. What you see is how he looks like a normal boy now. Instead of the shock of the diagnosis and your own prejudice and ignorance, you are starting to see him for him. I am thankful that your eyes are opening. But please use your words carefully. His therapy has had nothing to do with his “success,” because he hasn’t had any.

To all the mothers out there with Autistic children; I get it. I understand. Congratulations on your little accomplishments today! Whatever they may have been! You are doing a great job, and your tireless efforts do not go unnoticed. Your child loves you and appreciates you, for all that you do. Even if they don’t know the words or ways to describe it. Every Autism mom is a role model to the other Autism moms. Rather we know you or not, see you or not, we understand. I applaud you, in all that you do. Keep at it. It will pay off eventually. YOU CAN DO IT!


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