I’ve been wanting to put this post up for a while. The second annual World Autism Day gave me the impetus I needed to actually finish and publish it.
A while ago I was in the waiting room of a local children’s clinic, waiting for my son’s doctor’s appointment. There was another boy there with his parents and his grandmother. He was probably about 12, and while I’m not sure what exactly was wrong with him, he had some obvious developmental delays. I watched as his grandmother took him outside in the small garden adjoining the waiting room, and the boy expressed obvious delight in nature and the outdoors. When he came back inside he came up behind me and gave me a hug. It surprised me at first (I didn’t realize he’d come up behind me), but then I turned around, gave him a big smile, and said, “Hello.” He smiled back. His grandmother immediately rushed into a defensive explanation of him and his behavior. I just smiled and said, “I know.”
And I did. While I didn’t know everything that this boy was struggling with, I understood him in a way I wouldn’t have a couple of years ago. I knew he struggled to communicate what he was thinking and feeling. I knew he had a lot of love in his heart. I knew he wanted to be accepted. I knew that more than anything else he wanted a kind word and a smile.
A few years ago, this interaction would have unnerved me. I wouldn’t have known what to do when the boy hugged me. I wouldn’t have known what to say to his parents. I would have felt awful for looking at him, afraid I was staring, but also felt awful for not looking, as though I was ignoring his existence.
I’ve thought a lot about why I used to be so uncomfortable around those with mental or behavioral disabilities. I’ve determined it probably goes back to elementary school. There were a couple of mentally handicapped boys in a Special Ed class that sometimes came to our regular classroom. I think if they’d been there a lot it wouldn’t have been a big deal, but they were only there once a month or so, and I remember being very uncomfortable then as well. They couldn’t speak or really interact with us, and I just didn’t know what to do around them. I’m sure the teachers tried to give us some guidance, but they probably didn’t have a very good idea of what to do with children who couldn’t interact or learn in normal ways, either. At a time in life when a lot of what you’re learning is social norms, it’s hard to know what to do around those who violate those social norms, so you try to ignore their behavior, but you often end up ignoring them.
Being the mother of a child with autism has changed all this for me. I now often wonder how I could have possibly not known what to do when one of these children interacted with me. They obviously want the same thing that, deep down, all of us want when we interact with others — a kind word and a smile. And those things are so easy to give.
I know I used to be more uncomfortable around the parents of these children as well. Again, I didn’t know what to say. I didn’t know what I should ask, what I could ask, what they would like to tell me, what would make them uncomfortable. So I generally just avoided the situation entirely. Now I know exactly what those parents want — an understanding smile. And I try to give it whenever I have the opportunity. When a child is melting down in the grocery store, I smile at their parent. When a child pushes my kid at the park, and their parent rushes over in horror, I smile, and try to smile at the child as well (though I’ll generally include a nice “no pushing” along with that smile). When I see someone, child or parent, at the end of their rope, I smile at them.
If I have the opportunity, I ask them about their kid. They generally start with a (sometimes defensive) tired explanation, “He has autism (or whatever).” I respond with, “I thought he might,” and go on to ask about how old the child is, where they go to school, what they like, if they have siblings, or whatever else comes to mind. What parent doesn’t like to talk about their child?
I’m not sure why it took me having a child with autism to figure out that the best reaction to any special needs person (child or adult, or parent of said child) is a smile and a kind word. You would think it would be obvious. But apparently I was a little slow myself. I’m grateful to have my son to teach me these things, and to bring into my life the great blessings of understanding and love.
That was a beautiful post. Thank you. It’s true: we do all want the same thing, deep down. To be loved and accepted. I have a couple of nephews with different degrees of autism, and I’ve worked with other children and young adults with varying degrees of difficulty. When I am able to get past my own discomfort (which I think we all have to some degree until circumstances teach us otherwise), and reach them with a genuine heart of acceptance, the reciprocity is amazing.
I think saying, “I thought he might” is kind of forward and assuming. But I am glad that you talk openly about it.
I appreciated this post, Vada (I have a little brother who is autistic).
This is a topic dear to me. I have spent many years working with developmentally challenged children as a speech therapist and the classrooms are filling up with autistic children. The population I work with also struggles with retardation. As the educational system becomes more sophisticated, I have seen miracles when the parent and teachers work as a team. I will no longer say that a child will not be able to do something no matter how unresponsive the child is when he enters our elementary school system. I’m sure working with neurologically typical children has its rewards but there is nothing…and I mean nothing…that can compare to working with a child to connect with conversation and see it happen for the first time. It is a party everytime it happens. I worked with a child for a year on greetings. He could say “hi”, then learned to add “how are you” but he didn’t understand the “I’m fine, how are you” part.. Now in junior high he chirps it out and follows it up with a basic but meaningful conversational exchange that isn’t scripted. What was difficult was explaining to him why this mattered as he looked at me with the deer in the headlight eyes struggling to remember what to say when it obviously painful for him. I finally told him ihe made people happy (especially his mom) when he talked and that is why he had to do it. He got that. I don’t know why autism is not declared a national emergency. I’m glad to see the Autism Speaks commercials coming out. If you ever have questions about negotiating the educational system let me know.
It is probably comforting to hear that. I can’t imagine any parent being offended (after the acknowledgment) anymore than I would be offended if someone said they thought I might be Mormon after I tell them I am. It is actually a relief that they don’t tell me they are surprised!
Juliann, I think I might know you in real life and bought your house? If so, you are awesome and thank you so much for your help and support with my son C. It still means a lot to me.
I remember when my son barely spoke and I was desperate to find other parents in similar circumstances. Thank goodness for the internet, it gave me some support.
After going through something difficult, I want to help others in the same position because I understand what they might be going through….in ways I could not understand before.
Unfortunately, the more time passes the more I forget what it is like for certain situations. The fact that older mothers dismiss the hardships of when children are babies and say that it is harder when they are teenagers means that they have forgotten some of the difficult trials of those first few years. (My 4th baby is much easier because I’ve got experience now).
It is one of the reasons I want to write in a journal now. I am worried that what I have learned in life, I will start to forget because time passes.
People are anxious in situations where they don’t know what to expect. I have a child with autism at my house right now for the day and I am slightly apprehensive.
Vada, your waiting room experience reminds me of mine. I was waiting in a speech therapist office while my son had his appt. My older daughter was with me and she started interacting with another child brought into the waiting room. After a while she matter of factly asked the mom, “Does he talk?” My daughter was a child who was used to playing with a child who simply didn’t talk much at all, so she wanted to know whether to expect language or not.
I hope the mother wasn’t embarrassed. It is nice to be able to be open about our children.
nice post.
I definitely relate to the experience of feeling more comfortable as time passes. every week I find myself in waiting rooms with those kids and parents, as so of course it feels natural by now to chat with those parents and trade our questions and stories. And with several years experience dealing directly with special kids (mainly my own, of course), I know just what to say and do, that comes naturally too.
Hi JKS, I wish I did know you but I have lived in the same home for 23 years.
Well, Juliann, how wonderful that there is more than one special person like you making a real difference to kids and their families. Thank you.
With a topic post heading like that I had to visit and read, and I’m glad I did. I’ve a daughter with Tourettes Syndrome, and it continues to help me remember that people need patience and love.
I stopped by from fmh. Love your post. Having a child with Autism has been a gift to me. I am so much more compassionate than I would have been otherwise, because I can’t help but really get it. I know how alone and scary it can feel to be the one with the child who is different.
I attended sacrament meeting in a ward other than my own this last week alone. A 16 year old boy with Down’s Syndrome set next to me with his family. During the sacrament he put his arm around me and laid his head on my shoulder. His Mom was mortified, she kept telling me that she would move him, but it really was OK because I get it. I know what it means to need that human connection but not know how to get it. I know what it means to have a child that people stare at and wonder why.