Saturday, April 14, 2012

The Conversation: Part 1

(Just a quick note… the conversation is paraphrased and not verbatim.)
It had to happen someday. I was hoping that it would be much later on, but I suppose we were just postponing the inevitable. We have to do this all over in a few years anyway, so I guess we might as well get on with it and hope for the best.

I have thought about it many times. I have had the conversation in my head more times than I can count. I planned well in advance because I knew at some point in her young life, Sofie was going to have to understand why Bianca is the way she is, she was going to have questions and it was only a matter of time before they came up and we had to explain autism.

That time came up last week when we were on our way home from Bianca’s speech therapy. I had the whole posse with me. Speech went well, but Bianca was VERY agitated leaving the clinic. About a month earlier they started incorporating swimming into her developmental therapy. Bianca, as most kids with autism, LOVES water. Swimming is BY FAR her favorite activity. She will stay in a pool all day and not get out. One of the only songs that she has ever made up on her own goes, “I love to swim, I like the flowers.” Both of which are true.

 So to say the least, Bianca loves her swimming therapy sessions. What she doesn’t love is going to the clinic and NOT swimming. She now thinks that she should swim during every therapy session. Her speech therapist had to run into the men’s room to catch Bianca, because Bianca (who makes Carl Lewis look like he is standing still) knows that we go in there to change for the pool and that the back door leads to said pool. Luckily for Bianca’s therapist, the men’s room was vacant or she could have been quite embarrassed.

Leaving without going swimming makes Bianca an unhappy camper and as we were leaving she was letting me know it. Luckily my son is now of the age where he can walk on his own and he follows (usually) because Bianca had her teeth clinched, was going completely limp, started crying, and kept saying, “Swim! Swim! Swimming! Splash!” as I tried to explain to her that we were not swimming today. She fought me all the way to the car, and as I slid open the door to the man-van, Luis hopped in and got in his seat up front while Sofie jumped up into her booster in the back. I lifted an unhappy Bianca into the van and guided her to her seat next to Sofie. She was still crying and really, really angry. I buckled the kids in, walked around to the front and started the drive home.

We weren’t driving for very long when suddenly a piercing shrill busted through my “noisy kids filter” that usually blocks out the wall of sound that comes from my children and let me know something was really wrong. It was Sofie, and she sounded like she was being hurt. I turned around to see Bianca attacking Sofie and not in the “sisters just rough housing” way, but in the “I am going to beat the CRAP OUT OF YOU!!!” way. I panicked and started yelling as sternly and loudly as I could hoping that the boom of my voice would startle Bianca enough that she would stop grabbing and pulling the fistfuls of hair by which she had Sofie at her mercy, but it didn’t faze her.

I looked for a place to pull over and finally got to an entrance to a shopping center. I pulled in and stopped the van in the back of the parking lot where only the employees and guys with cars that they don’t want to run the risk of getting dinged by carts or other car doors park. I jumped to the back where Sofie was crying her eyes out and screaming for Bianca to stop. Luis had now joined in on the crying sensing Sofie’s distress and even I could feel the pressure of the situation. I grabbed Bianca’s hands as I was telling her “No! Stop” and untangled the mess of hair between her fingers. As I did, clumps were attached to Bianca… and no longer Sofie. I applied some deep pressure to Bianca’s shoulders and joints to try and help soothe her, and grabbed a sippy cup for her to get a drink. No sooner had she gone into the rage, it was over. In a matter of minutes she was back to her old self. Sofie was not.

I unbuckled Sofie and she jumped over the bench seat and into my arms. Her face was streaked with tears, her nose was runny and the look on her face was one of being betrayed. I looked over her scalp… it was red, but she was going to live. I administered kisses to all of the spots she deemed needing the TLC and got her some tissues. Luis had calmed down, but Sofie was still going through those breathing spasms a kid gets after a really good cry.

“Why… did… Bianca do that… to me?!?” Sofie asked still trying to gulp for air.

Oh boy.

Sofie is 5 ½… does she really need to have her eyes opened to what is really going on with Bianca? I did what any father with all the answers does. “We will talk about it when we get home, OK?” I said hoping that those would be acceptable terms. I did not feel like the man-van in the middle of the shopping center parking lot was the right place to have this conversation, PLUS it bought me some more time.

As we drove home I kept a close eye on my rearview mirror which I now had positioned not to see the traffic behind me, but the disgruntled water-lover in the back seat. I ran through the various ways I could try to explain to Sofie what autism is and how it affects Bianca. I tossed around talking to her like an adult versus talking to her in language that she could understand. I decided that I would use a combination of the two. Use real terms, but explain them to her along the way so that she could understand what was going on.

We pulled up to the house and I got out to find Luis passed out in his seat. He was slumped over with his chin resting on his chest and he was snoring mightily. At least that was one kid I didn’t have to worry about while trying to talk to Sofie.

I carried him upstairs to our bed and laid him down, he barely flinched. Then I went to get the girls. I unbuckled Sofie and Bianca, grabbed their stuff and we walked towards the house. Youth must be a great forgiver. Not five minutes previous Sofie was incredibly hurt emotionally by Bianca… now she was holding her hand as they walked to the house, informing Bianca that she can’t run off. She really is an amazing sister.
We got situated in the house and once I had a snack ready for everybody and drinks handed out, it was time for ‘The Conversation”.

“OK Sofie… let’s talk.”
“OK Daddy”
“Do you remember what we are going to talk about?”
“Ummmm…. Can you give me a hint?”
“Heh… yes. It is about your sister.”

No matter how planned out you have it, no matter how great it goes in your mind… be prepared for it to go NOTHING like that when it comes time for execution.

I asked Sofie if she had ever noticed that Bianca might be different than her. Sofie said she had, and when I asked in what way, she said that Bianca was taller, stronger and faster than her. I couldn’t help but smile. Here is a girl who has an older sister that doesn’t really communicate all that well, still wears diapers, goes to multiple therapies that neither she nor her BFF/cousins have to go to and all she notices are the physical attributes. It was really quite lovely.

I asked her if she ever noticed that Bianca doesn’t talk like she does.

“Oh yeah!” she replied, as if she had never even thought about it before. More smiles from dad.

“Well…” I said, “Bianca has something that makes her incredibly special and different. It is called Autism.”

“Oh. Can I be autism too?” Sofie asked with her head tilted inquisitively.

“Uh… no. Bianca has autism, but she is not alone. A lot of really cool kids and adults have autism too. It makes some things a little harder for them to do… like talking, or listening, but they are people that want friends and want to be treated nicely just like you and me.”

Sofie seemed to understand and soak in the information. I could see the thoughts racing through her mind as her eyes were clearly visualizing a bunch of different scenarios.

“So you see Sofie, if you wanted to get a person to understand something that is really important to you, and no matter how hard you tried you felt like they weren’t listening, how would that make you feel?”
“I don’t know”

“Have you ever tried to get Mommy or Daddy’s attention before and you felt like they weren’t listening to you?”


“How did that make you feel?”

“Frustrated” Sofie answered back. The cute thing is that she knows the word, but doesn’t pronounce it so well. It comes out more like “Fer-ster-rated”.

“That is how Bianca feels when she can’t get us to understand something, and can’t understand what we are saying or why we can’t do what she wants to do. And when a person gets that frustrated, they get a lot of nervous energy, and that can make them upset. So when Bianca started to pull your hair, she wasn’t mad at you. She loves you so much. You make her smile every day. Bianca didn’t mean it. We do have to be careful though. That is why I always ask you to leave her alone when she doesn’t feel like playing with you. I don’t want her to get that upset and she can’t really tell you that she might not want to play at that moment.”
Sofie accepted the explanation and went on to ask some other questions about why Bianca doesn’t talk that much and why she uses sign language. I also made sure to spend a lot of time pointing out all of the ways that Bianca was just like Sofie. I explained in greater detail that the reason we went around and handed out blue light bulbs to all of the neighbors, had t-shirts with Bianca’s picture on it and went on walks for Bianca was so that we could help others learn about people with autism.
After our talk, Sofie seemed no different. She walked up to Bianca who was wearing one of my caps and was sitting in a large plastic pail watching The Backyardigans Chichen Itza Pizza episode for the billionth time and gave her a big hug and a kiss.

“I love you soooo much Bianca! You are the best sister ever!”

The conversation is still ongoing. It will probably never end, nor should it. I want our family to be able to discuss Bianca’s challenges openly and honestly. It didn’t go quite the way I had envisioned it. I was a lot more nervous than I thought I would be. I suppose that the fear is that you might somehow scare your child, and you want to avoid that at all costs. Kids are smarter and more aware than we give them credit for though. You may not be able to stick to your script, but talking about Bianca and autism with her sister wasn’t as tough as I had thought.

I know without a doubt that a lot of people have Bianca’s back and that provides great comfort for me and my wife. Bianca is such a lucky girl, but not nearly as lucky as we are for having her in our lives. The lessons she teaches all of us are endless. I am so grateful for our family and even more grateful that Bianca has such a great sister like Sofie.
As close as sisters can be.

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  1. Oh, that sounds so familiar! Our boys are 13 and 15 (and I bet you know why I always list the younger one first) and we are still having that conversation. BB love GL very much; the thing we have to watch for is his trying to take too much of the load himself. We have to keep reminding him that he is GL's brother, not his parent.

  2. This is the hardest conversation. My 6 1/2 year old son has ASD. My 5 year old daughter does not. Every once in a while autism gets ugly towards the 5 year old and I have to remind her, again, of the differences in her brother and how very much he is still the same.

    Some days she gets it without concern. Some days she sobs that it isn't fair. Some days it makes her want to protect her brother more than ever. (Doesn't it work that way in all of us)

    Good job explaining, best you can, to that incredibly tricky age. It is a never ending conversation and, just like with the rest of the world, it should be. I find myself explaining it to plenty of kids that aren't my own as well. Awareness, right?

    Best of luck! <3

  3. I liked this! That hair grabbing can be brutal lol!

  4. This brought tears to my eyes. We've had similar conversations with our oldest daughter about her little sister. Little Sis is 4 and on the spectrum. I found you through your video on youtube, which had me crying like a baby by the end! Our stories are similar -- we noticed Little Sis was "different" around 15 months, official diagnosis at age 4 (just last summer). We have 2 neurotypical daughters as well, ages 10 and 2.

    You have a beautiful way with words and your love for your kids is obvious. Please keep sharing!