Kai came over next to me to see what I was looking at. I was on my friend Betsy’s blog and she has a photo in the sidebar of a person’s hand holding the autism puzzle piece.
“Do I have autism?”
The question took me by surprise.
We have a magnet of the autism ribbon on the back of our car. Over the years we have had numerous autism books and publications in the house. My wife and I have had conversations about autism while Kai was sitting at the kitchen table with us. Not once had he ever asked about autism.
I told him that, yes, he does have autism.
“Is it a bad thing?”
Oh boy, is that a loaded question. I know that many grownups get upset about how people answer this question. I was just concerned about saying something that might make Kai feel inferior.
I told him that it wasn’t a matter of it being a good thing or a bad thing; it just is.
The moment I said it, I knew it wasn’t a particularly good answer. It surely wasn’t going to satisfy him.
He asked the question again, but I couldn’t think of a better response. In my head I started cursing the Seattle Seahawks. It’s their fault for putting me in this position.
Kai then mentioned a boy in one of his special needs activities.
“A___ has autism and he can’t talk. He just grunts.”
“But I can talk really good.”
Yes, autism is a wide spectrum, I explained. It affects people differently.
He mentioned another boy.
“C______ sometimes gets too close and violates my personal space. He doesn’t talk either.”
He then had me click on the puzzle piece which took us to the Autism Speaks website. I pointed out the stat that said that autism affects1 in 54 boys.
“That means that if you had 54 boys, I would be the one with autism!” he said enthusiastically.
I was trying to think of what to say, but before I could come out with something Kai said he had to go to the bathroom. When he came back his mind was on something else.
So I totally failed to take advantage of the opportunity to have “the talk” with him.
But it is good to know that he now has an awareness of his autism. It opens up the opportunity to talk to him about it more. Hopefully I will be better prepared to have that conversation the next time.
Right now I kind of feel like Peyton Manning. I didn't take advantage of my big moment.
I’m not sure if Peyton will get back to the Super Bowl. But I’m pretty sure I’ll have another chance to have a talk about autism with my son.
I better start preparing.
Oh my! Every once in a while I'm glad my boys don't talk.:) But seriously, that's a hard one. I do think you are correct in whatever you say that you don't make Kai feel inferior. I bet Autism Speaks or even a google search might give you some ideas on how to deal with that topic. And I'm sure it will be an ongoing conversation as he grows and has more questions.
ReplyDeleteI wouldn't be too hard on yourself. Sounds like Kai was fine with how you handled it! I bet as you talk more and you explain characteristics of autism that he might even understand more about why he feels a certain way or struggles with certain things. It might even help in his ability to recognize them and deal appropriately with them, too. I sure hope so! You could even talk about struggles he has had in the past and how he's matured and improved in handling them. That should make him feel great!
Yes, we were cursing the Seahawks, too. Oh dear.
That's a good idea to do a search and get ideas for dealing with that topic with your child. I agree that talking this out with him will give him a better understanding of his own feelings and struggles. I didn't think he was ready to have that conversation before, but I think he is ready now.
Deletedon't beat yourself up...I think you handled it well. certainly better than I think I would. my boy is non verbal so im not sure I`ll ever be asked the question but I know for sure his little sister will and no doubt it will catch me off guard!. I do not comment here often but I always read your posts, they are often an inspiration to me. your little guy is a delight.
ReplyDeletehappy 2014 to you!....Allison
Thanks for kind comments and for your loyal readership, Allison! I'm sure you will do fine whenever your daughter brings up the topic. Happy 2014 to you, too!
DeleteYuji...I know you know the following. I just wanted to explain what we had done with our son to your readers in case they're are new parents.
ReplyDeleteOur talk with our son started out with his ABA therapy...our explanations of it, and why...then the medical explanation from what is known neurologically.
That settled any curiosity he had. We just advanced his strengths at a pace which would fulfill his heart's desire, and modified his deficits at a pace, and in a manner, which proved to be most effective.
My point is that we focused on his adapting to, and excelling in, life...not on his diagnosis. We explained how others may react to any quirks he may have so he would neither blame himself, or others, for his being a little different. We also helped him modify his actions to be in line with reason...not necessarily to be in line with societal expectations.
We were never concerned with normalizing him. What is considered to be normal in society...often defies reason. We weren't concerned with extinguishing his drive for repetition...we merely saw it as a potential strength which by changing the outward manifestation of...to a positive outlet...could help him in his future. By incrementally diverting a negative behavior while simultaneously incrementally increasing a positive behavior which would benefit from such behavior...his drive won't be extinguished...merely converted. We encouraged his love of numbers and letters by giving him examples of structured and helpful repetition (very early reading and math). Instead of letting him merely line up meaningless letter combinations on the floor in great spirals...we showed him how much more fun it would be by making words. We didn't want to extinguish his desire to line up the letters...we just used it to teach him reading. By giving him structured number combinations long before Pre-School...he learned math. His urge for repetition was satisfied...but in a way which would help him excel. Even with his compulsions...simple diversions of the need to get rid of the nagging urge into a more acceptable form was all that was needed. By focusing on the urge...it only becomes worse. Just by giving a positive outlet...or at least an inert one...it will allow him to not suffer the negative ramifications of the attempted extingusihment of it. For the longer term diversion of compulsions...exercise to exhaustion will usually calm the compulsive urges all day long. By channeling urges into exercise turns a negative into a positive. By making it rewarding...it is no longer a compulsion, but a drive to tap into.
I know...I had suffered years of compulsions and impulses of which I finally learned how to divert...when I was still young.
Sorry Yuji...I believe this is called Hijacking a thread :)
I just don't wish for Autistic children (or their parents) to think that they are doomed to never being normal. Normal is not that for which should be strived. I also don't wish to be flippant. I know there is a wide range of the spectrum. However, I also know that through incremental change as greatly encouraged through positive reinforcement...over time...many negatives can be changed into positives.
Shiroi, thanks for sharing the methods you have very successfully employed with your son. His tremendous achievements are a testament to the way you channeled his behaviors into positive activities.
Delete