Emma’s story. She is 42.
My story is a lot different than parents who have young kids with autism now. See, my kid didn’t have autism 20 years ago. Oh, he had autism. I just couldn’t get anyone to say he had autism. It was a different world then and it was a rare diagnosis at the time. I was told over and over that I was just an overly concerned mom. I was just an inexperienced, over-reactive young mom. I just didn’t have another child to compare him to. After all, kids develop at different rates, right? Even his dad thought I was being paranoid.
But a mother knows. I knew.
Of course, I didn’t know it was autism. I didn’t even know what autism was. I didn’t have a word for it, but I knew something was wrong. And I wanted a word for it. I would go to the doctors’ appointments and tell them: “My baby won’t smile. My baby won’t cuddle with me. My baby isn’t trying to make sounds. Listen to me! My baby rolls away from me!”
But no. I was just a crazy mom. After all, he was hitting a lot of other…what do they call them…developmental milestones? He walked early. Never even crawled. That’s gotta be a positive, right? You look for things…anything…to reassure yourself that your kid is ok. My kid didn’t even “bother” crawling. He just skipped right to walking! He could put any puzzle you gave him together. Perfectly. Perfectly…but upside down.
Then there was the rocking and the head banging.
And I felt like I was banging my head, too. Until one day, at the lab I work at, I was talking to a geneticist about Brian. And she listened. Thank God, finally someone listened. Nobody but a parent who has been there can understand why getting a diagnosis is a good thing. But if you’ve been there, you know what a relief it is to finally have a name for it. The diagnosis gave Brian a chance to get into a special preschool class. He didn’t speak yet, so at school they taught him to use signs and pictures to communicate his needs. It turned out he was actually incredibly smart and perceptive. But at home? We didn’t need sign language or pictures. I was so tuned in with him that we didn’t even need words.
I remember one night, Brian was upset about something and he was just standing, like he often did, banging his head over and over on the wall. I was exhausted, watching him bang his head over and over. I finally asked him, “Baby, why do you do that? Doesn’t that hurt you?” He stopped and looked at me and shook his head “no.” Then he went back to banging his head. I got out of my chair and walked to the wall. I stood next to him and, without a word, I started banging my head, too. I hadn’t banged it more than a few times when I felt his hand on my arm, pulling me away from the wall. I knelt and looked him in the eye. He shook his head and rubbed my forehead with his little hand. He wanted me to stop so I wouldn’t hurt myself. So much for kids with autism not understanding emotions.
Finally he started to speak, which made some things much easier and some things much harder. Once he could talk, I started to hear how hard life was for him. He came home from school one day and asked me, “Mom, why was I born with a bad brain? Was I bad? Does God hate me?” What could I say to that? I told him, “Maybe you’re not the one with a bad brain. Maybe the rest of us are the ones with bad brains.”
I never made excuses for my son. I know that the world doesn’t give anyone a break. I had my own share of tough times in the world, and I knew that it was going to be even harder for Brian. So I decided that no one was going to pat my kid on the head, tell me how cute and polite he was, and what a pleasure he was to have in class and then just pass him on to the next teacher. He was going to get everything he needed to meet all the academic expectations of any other child in school; I would see to that.
I had to fight for him to be retained twice in elementary school so he could catch up with the other kids. They told me that he would never be normal no matter how many times he was held back. They told me that I was just in denial. But I felt like I had to make sure Brian had every opportunity to learn. It seemed like everyone wanted to help me accept my son’s limitations instead of helping him to overcome them.
In 1995, Indiana instituted the autism waiver (and I should probably knock wood that it doesn’t fall victim to this crappy economy). It wasn’t exactly a pile of money, considering all the services Brian needed, but it changed everything. Suddenly we weren’t alone. It paid for us to hire a consultant to pave the road ahead of us, training and supporting his teachers. He went from a separate class in a special school to being almost fully included in regular classes by middle school.
And yet all along the way, what did people keep asking me? “Why are you doing this to your son? Why are you putting him through this? Why are you putting the schools through this? Why can’t you just accept your son the way he is?” Those questions were answered the day Brian graduated high school, 8th in his class, and was handed his Honors Diploma.
I still worry about him, but not for the same reasons. After all, he has long since put to rest any questions about his academic potential. He is now a sophomore at Ball State, majoring in computer science and minoring in Japanese. Don’t get me wrong, he has to work for it. Doing well in school is as important to him as volunteering at church. I know that he will graduate, get a good job, live a responsible life.
But he still has anxiety and great difficulty understanding social relationships. But it is a myth that kids with autism don’t want or need friends. He is way more intuitive about emotions and seems to feel everything more intensely than anyone I know. He doesn’t bang his head anymore, but I’m sure he often feels like it.
He has such a gentle spirit that people just seem to gravitate to him. It is common for people to come up to us and tell Brian how he is an inspiration to them. But no one calls him to go to the movies. He wants so much to have friends, to date, and to fall in love and get married someday. He even knows how many kids he wants…two. A boy and a girl. I keep reminding him that it’s not quite that simple to plan.
The dating thing is so hard. He got set up on a date for Prom and was so excited, but the girl had some of her own issues and ended up bailing on him at the last minute. No problem, though. Three girls who had come dateless to Prom decided they needed him to be their escort, and he had a blast. Especially when he was crowned Prom King later that night!
Back when Brian was little, I resisted putting him on medications because I was always afraid it would change his loving, kind personality or ruin his creativity. But the doctor reminded me that his anxiety and attention issues were holding him back. I’ll never forget the doctor saying, “How would you feel if you found out you were denying your son something that could be life changing for him?”
As I sit in the coffee shop and watch Brian drive off to his job at the pizza place, knowing he will be getting home and hitting the books for hours to be ready for class again tomorrow, I think about how far we have come. I think back to the many times I was asked, “Why are you putting him through this? Why can’t you just accept things as they are?” And I realize what my answer should have been:
“How would you feel if you found out you were denying your son something that could be life changing?”
As told to Lisa Combs by Emma Osborn.
Lisa Combs has 25 years of experience as a special educator. She has a Masters Degree in Special Education from Ball State University. She supervises The Miami Valley Autism Coaching Team and also coaches school personnel, parents, families, and individuals with autism through her own consulting practice, Spectrum Autism Solutions www.specturmautismsolutions.com.
If you connected with Emma’s story, you can reach her on Facebook at www.facebook.com/EmmaIndeed/.
This story originally appeared in Facing Autism in Muncie, Indiana, a publication of The Facing Project that was organized by Interlock in Muncie, Indiana.