you tell em, buddy boy

“Brooke, honey,” I asked, “Do you remember how we talked about autism?”

“Yeah,” she said to her chair.

I knew her heart wasn’t in it, but at least she answered without prompting. That’s something.

“Do you remember that Mama said that you have autism?”

“Yeah.”

Clearly I’d have to proceed without a lot of encouragement.

“Well, baby, April – that’s the month that comes after March, right?”

I paused to make sure she was still with me.

“Yeah.”

“Well, April is Autism Awareness Month.”

“It comes after March,” she volunteered.

“That’s right. And April is a time when people learn about autism.”

I thought about asking another question to keep her engaged, but the constant third degree gets exhausting.

“So, Brooke, Katie is going to make a really big painting for Autism Awareness Month and hang it up at the Mayor’s office. Isn’t that cool?” (Ed note: please click –> here <– to read about Katie’s mural!)

“Yeah.”

“Do you think you’d like to help her with the painting?”

“Yeah.”

“That would be great, honey, I ..”

I didn’t have a chance to finish. She had something pressing to ask.

“Who says, “You tell ‘em buddy boy” to Elmo?”

“The pillow does, baby,” I said with a tired smile. This is what we do. Elmo’s world is the flavor of the month. The scripts are on loop.

“That’s right,” she said, repeating her pitch-perfect imitation of the pillow on Elmo’s World. “You tell ‘em, buddy boy!”

She had cracked herself up. She was now laughing uncontrollably. Our conversation was over.

I will keep trying. I will keep trying because I cannot in good conscience have this conversation about her without making an attempt to have it with her.

She has a right to know that there is a community out there for her. That there are children who will grow to adulthood by her side who have had a similar life experience. Who get it. Who know what it’s like to see the world differently from everyone else they know.

She has a right to own the words. To make them her own. To use them in a way that she finds appropriate. To tell me how to use them.

She has a right to know that there are tools that can help mitigate her challenges. She deserves to know that she has gifts. Beautiful, wondrous gifts. That for her, autism is not a disease that needs to be eradicated. Because until we can give her the option, I will not let her grow up feeling like she should hate such a large part of who she is. She deserves to know that SHE is not something in need of fundamental alteration. But so too, she should know that there are others out there who are crippling disabled by their autism. She should know that if she can find her own voice someday, she will have a responsibility to fight for them too.

She has a right to know how many of us are fighting for her.

I will keep trying.

Ed note: Three days left until the eve of World Autism Awareness Day. We’re not giving up on a Blue White House. One blue light, Mr President. Just one. It would mean the world to those of us for whom autism IS the world. Click -–> here <— to read and share my letter to the President. Thank you.

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23 thoughts on “you tell em, buddy boy

  1. Yes, Sweetheart, she has the right to know and you are doing exactly what you should be doing. She will understand more and more as the time goes on.

    Love you,
    Mom

  2. She has the right to know, and you fight for her in amazing ways every day. My son has the right to know too…I just don’t know how or when to tell him. (will you do it? :-) )

  3. She will know, she will absolutely know!! How could she not with a mom like you as her guide!! Still holding out hope for the White House to jump on board!! Crossing my fingers!!

  4. Not only will she have such understanding of all YOU have done for her, but one day she will carry your torch, Mama. She will be the one purposefully pouring herself into the hearts of so many and giving them hope, making the world a better place for all.
    xo

  5. “hang it up at the Mayor’s office”

    i hope that mayor knows how extremely, extremely lucky he is. an original brooke? that’s one beautiful work of art he’ll have on the wall.

  6. I think as Brooke’s mom you have already shown her and continue to show her the beautiful gifts that she has inside and that she shares with the world.

  7. She has a right to know and she has a right to be part of the dialogue and you are encouraging her. Self-awareness is a tough, tough road on this journey, but I know you will help her, as you always do, with grace and love.

  8. Seems to me that “You tell ‘em, buddy boy” is really pretty close to “Yes, mom, that sounds great! Go ahead and keep talking!”… I mean- she uses scripts to communicate with- and the choice of THAT script looks pretty supportive to me.

    I think that each of the Diary Girls has something to say- and that’s pretty wonderful…

    So- to use Brooke’s words- “You tell ‘em, Diary Lady!”

  9. I’ve had this conversation so many times with my daughters. They know that they have autism,but are unable to tell me what that means. They will often say that it means that they’re beautiful, smart, and kind. All of which is true!
    I’m including the links to some songs that will be used throughout the month of April at my daughter’s school in observance of Autism Awareness Month. Maybe they be useful to you and Brooke. They’re are about hope and acceptance.

    Mariah Carey and Whitney Houston- When You Believe
    http://www.youtube.com/watch?v=6INAvfwazW4

    Red Grammer- See Me Beautiful
    http://www.youtube.com/watch?v=M3bPOZBKCO4

    Christina Aguilera- Reflection
    http://www.youtube.com/watch?v=OvqL7W32M7U

  10. I love you Jess. You have a gift with your love and your ability to describe your feelings, those same feelings and emotions that many of us moms experience. Thank you.

  11. Keep trying. One day when you least expect it, Brooke will bring the conversation to you and it will flow freely. I’m certain of it. Brooke will grow to be her own strongest advocate and she will advocate fiercely for others as well. Perhaps my beautiful Jonas will join her in the advocacy trenches. It is one of my greatest hopes. You’re a beacon of hope, Jess, for so many in our community.

  12. I wish I had the ability to have such a conversation with my little one. But there is no way it could happen right now, but I keep praying for the right time and Brooke will get it when the time is right for her as well. At least you are braver than me and trying. Brooke will grow up to be an amazing young lady.

  13. So, once again I am crying. Yesterday I called around trying to find someone who can help explain to my son and his sister his diagnosis. How do we tell him without crushing him? How do we tell him about all these struggles without making him feel “less than”. How do we have him hear all the wonderful things he brings to this world and our family without having him walk away feeling as though all that matters is the word “autism”. This is a constant stuggle for our family. Does the word matter? You have always made a compelling argument for why it does and I do hear your reasoning……but he’s only one little boy. I also recognize that we are so lucky that he is asking questions. He knows all his struggles as well as his strengths….just not the word. We’re getting there, Jess. I just need a little more time!

    • Susan, I know it’s not easy. 

      Above all I think our kids react not to what we say, but to HOW we say it.   I believe that if we make the word taboo, they will internalize a need to fear it or be ashamed of it. If we set ourselves up for a big, ominous TALK, they will sense our trepidation. If Mama’s scared, this must be HUGE. 

      If we can instead make it part of the vernacular – simply an acknowledgement of their differences – then there’s no mystique about it. It simply IS. Hey, we’ve never talked about this before kiddo, but …’. Not a big deal. No judgement. It just is. 

      As for your questions – ‘How do we tell him without crushing him? How do we tell him about all these struggles without making him feel “less than” – well, you answered the second one yourself at the end of your comment. ‘He knows all his struggles’. Of course he does. Far more than we can ever understand, our children know their own challenges. 

      As for the first, I truly believe that if we frame it positively, the word is liberating rather than crushing. If you read the Stephen Shore post below, you’ll see that he says that the word autism just meant that there was an explanation for it all. It gave his differences a context. And for that he was grateful. 

      I have a couple of other posts on the topic, including the one that I referenced above that also walks through some specific steps to disclosure that I got from Stephen Shore. I hope they help. 

      In the end, each and every family is unique. Each child is unique. Each child is ‘just one little boy’ or girl. But unique does not mean alone. And the word, when used simply as an explanation for a particular set of strengths and challenges can help every one of them to find their village. (I get into this in much more detail in the hopeful parents post below). 

      You can only do what feels right for you and your family. And I’ll be here cheering for you all no matter what ‘you decide. 

      http://adiaryofamom.wordpress.com/2008/10/13/at-what-cost/

      http://adiaryofamom.wordpress.com/2010/09/28/its-for-me/

      http://www.hopefulparents.org/blog/2010/6/17/theirs-to-define.html

      Hugs

      Jess

  14. I’ve started the conversation here in our house with the Diva about Boy Wonder. I want her to know he matters and we are not ashamed. We will not hide him or his autism away. It’s simply not a choice. I believe BW understands everything so I “talk” to him too.

    Although Diva has said Mommy BW talks to me just not you. :D

  15. I know I don’t have to tell you this, but yes, keep talking to her about autism every now and then. Mention it here and there, just in passing. Sometimes it will be hard (like Nigel’s reference to “the A word” for a while), but she will know that her family understands and accepts her no matter what. Of course our kids know that they are loved and cherished already. But when they see the autism books in the house and the magnet on the car and hear us talking about it and know that we write about them and FOR them and that, as I’ve said to Nigel and Aidan, we.are.an.autism.family, in the end it makes all the difference. Love you, my friend. xo

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