What I’ve heard, What I thought, and What really matters.
I have been a mom of an autistic child for 14 years. Sometimes, when I have been asked for insight, I am guilty of getting up on my pedestal. After all, I taught in elementary school for 28 years, I worked with many autistic kids along the way, I am now raising an autistic child, and I have learned so much. Surely I know more than someone newer on the journey.
I know somethings. But yet, I’ve only just begun to learn. This is a lifelong journey. Just as learning is. I’ve really only started. This is just my understanding right now. It is what I’ve heard ,(for better or worse), what I thought, and decided what really matters.
What I heard about autism when Goldi was diagnosed………..
We sat in the pediatric doctor’s office wondering and worrying. This was the office of the “go to” doctor if your child showed signs of being on the spectrum. Wondering itself is enough. If you are just wondering, it can be like dreaming that the sky is really the limit. But it can be a deep bright blue sky, or gray one, or even a black one. Worrying can sure taint the wondering.
“Your daughter has autism. “ he told us.
“Okay, “ I said in tears, “Is there a chance she could be another Temple Grandin? “
At the time, she was the hope of anyone who had autism. She was the model of what your life could be despite autism. Temple Grandin was the one I knew of that did something with herself and did is successfully.
“Oh! I am sure she’ll be successful. Maybe more so than Temple Grandin herself, “ answered the doctor.
“Wonderful! She may have a chance at her PHD and go all around the country speaking about the cause or sharing her expertise with passion. Maybe her autism is to her advantage in that way. Maybe…..”
But maybe Goldi wouldn’t be another Temple Grandin. Did we want another Temple Grandin when we have a Goldi? What really matters is that Goldi is Goldi for a reason. Just like Temple Grandin is who she is for a reason. And at that moment, what mattered was we had an answer to our wonderings about all the quirks and crookedness of our lives thus far. And it was up to us to move forward and begin to dream.
What I heard about autism from an experienced teacher
The bell rang to close the day. I meandered around classroom to tear down the day’s show and set up for the next. Sometimes teaching kindergarten felt that way. You set the day’s stage for what you hoped would provide the best learning environment possible. Then the kids came and experienced what you had hoped would be the best learning possible. I performed and my kid audience applauded, booed, and certainly sent their reviews. ( as did the parents) Finally, you clean up all the mess that comes with kindergarten learning , making sure everything is in its place, fresh, and ready for the next day. Joey needed his laminated visual chart wiped off. Nina needed her morning assignment all set up on her desk. The leveled books needed to be switched out.
“So, I think Betty has autism. “ says a voice.
Another teacher has walked in my room. This is the start of her vent.
“Are you sure? “ I ask.
“She totally has sensory needs. She has no eye contact. I know it’s autism. “
I know all about autism and I know if a student has it. I know exactly what to do.”
To know everything about autism and know exactly what to do about it is an absolute impossibility. I wish I had that gift. At that time, I had been a parent of an autistic child for about 10 years and I still didn’t know everything. Nor do I know think that I will ever know.
“It’s good you do know. That will help.” I said after pressing my lips together to reserve my true feelings.
What really mattered to me at that moment, was realizing how little we know about autism and yet how much we claim we really know, almost to the point of thinking of ourselves as an expert. If there is one thing that I’ve learned now, is that autism is not a label for just anyone, and it is not the “go to” conclusion when there is no other answer. The real expert on autism is perhaps the one with autism.
What I heard about autism from another parent…
I was folding laundry, and I heard it said on a podcast. It wasn’t the first time. But it keeps being said. It is said by those who know and admit, that they are not experts. And to me, that IS what makes someone an expert.
“You have met one child with autism, then you have met one child with autism. “ said one mom.
We need to let those words sink in. There may be social, sensory, and language challenges that autistic persons share. But what makes one laugh or smile, makes another cry. Some feel rested and refreshed with calming music. But some need absolute silence. We need to get to know, help, and most importantly LOVE the autistic one in our lives. We need to enjoy them. Find out what makes them shine. Nothing else matters.
What I heard about autism from Goldi,
I saw the school custodian wear a blue shirt with the letters for autism spelled out. Each letter stood for something. Always Unique , Totally Interesting, Sometimes Mysterious it said.
Some wore these shirts during Autism Awareness week. I thought those words were the best I had seen in print.
“What is does it mean to be autistic?” I asked Goldi.
“I have no idea, but I love you mom,” said Goldi.
What mattered at that moment was not that she knew how to define autism. That shirt didn’t define it either. What mattered to her, was that she was unique, interesting, and even mysterious. She was going to live life knowing this. Most of all she was going to live it with love. That is what she did then, does now, and still does.
What I heard about autism from the One who made ALL those who are autistic
It is easy to picture Moses with his long flowing beard calling out boldly and forthright, “Pharoah! The Lord says : ‘Let my people go!”
But I forget, Moses stuttered. He stuttered big time. Enough so that he was insecure and felt not up to the task that God called him to do. So as soon as God asked Moses to lead the Israelites into freedom, he said: “I can’t talk well. Send someone else. “
But Then the Lord said to them,
“Who has made man’s mouth? Who has made him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” Exodus 4:11
I know these words don’t directly speak about autism. But they might as well. They could include any disability, special need, or limitation, and we could offer any excuse in the book for NOT being able to do what we are needing to do.
There is nothing to say to that except,
“Yes, Lord. It is you that made it this way.”
What matters is that there is a God, the Creator. I am not him.
So autism or not, God made created Goldi to do something and maybe He allowed her to have autism for that very reason . Nick Vujicic has no limbs. He does have a pair of shoes in his closet just in case. Why doesn’t he just give them away to someone who actually has feet? Because his hope is welled up inside of him. A hope that believes that one day, if God willed it, he really could walk. A hope that believes that even if he didn’t in this life, then the shoes are a reminder that one day he will not just walk but dance. He will wave hello and raise His arms in praise of the One who allowed him to have no limbs on earth. Where did he get this hope? He got it from reading about hope in the Word. Words like these:
John 9:1-3 And As he passed by , the saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind? Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. ”
Nick is limbless. Goldi has autism. Sin is evident. We have all sinned. We all fall short. It is easy to just blame it all on sin and figure we are doomed. But that is not what Jesus does. His reminder is that God is greater than this sin that leads to death. God is on display in Nick, Goldi, and all of us other sinners. Sometimes it seems like we see God only in those who show greatness. It is easy to see greatness in those that are successful, popular, or those who did something BIG. But this reminds me that we need to look where the world does not look- in the “least of these” . For there, just as Christ says, God is displayed. And sometimes, there, we come to know that He is more great and amazing, than we had ever comprehended.
This is what I understand now. This is what I carry with me along this journey. Knowing that I only know something and still have much to learn. More people will say voice their expertise. There is more to think about. But as I’ve heard someone say, “God only knows all, and in the end that’s the only thing that matters.”