I Can Bargain With The Best Of Them

156d5eb8fb4d8126c0ed06e5d4ef4912I do a lot of bargaining. More than I probably should at this stage in the game. I mean, honestly, Cooper is 3.4. I’ve been doing this for a long time. I’ve been waiting almost 2 1/2 years for a first word. Isn’t that crazy? Every month that goes by I silently add up the months in my head. 1.4 years of speech. 1 year of occupational therapy. What else? 2 years until kindergarten. I’m almost OCD about it. And then I bargain.

I probably should be a lot farther in the stages of grief. I blame this on a few things.

Cooper has moments, hours, even days where he is a completely normal kiddo. And I hold onto those moments so tight. There are days with no whining. No sensory issues. Days where he completely surprises me. He will understand everything I say. Even participates perfectly in therapy.

It would be so much easier for my mind and heart to accept Cooper if he didn’t have these moments. I keep telling myself that if he was autistic or did have sensory processing disorder he would have it ALL the time. In ALL settings. Not just every other day or so.

So, in a way, those great moments are keeping me going. Stringing me along.

If I had a quarter for every time I said something like, ‘just let him talk. I’ll do anything. I can handle autism or any of it if you just let him freaking talk.’ I would be a very, very rich woman. I need to hear his voice. Sometimes, it’s all I can think about.

And then I’ll see other kids who are more naughty than Cooper or more delayed or less social and they talk. I don’t understand. Why? I need someone to explain it to me in a way I can understand. Why?

And then I bargain some more. “I’ll take the autism. I’ll take the apraxia. Just let him talk. I don’t even care if he can only be understood 75% of the time. Just let him talk to me.”

And this bargaining doesn’t get me anywhere. Maybe I’m not bargaining with the right people. Or not offering enough as collateral. I’ll do anything though.

Here is what I do know. I watched a video on the apraxia Facebook page about a little boy who is 5.5. He didn’t have any words until 3.5 and then had a language explosion. I watched this video 5 times. I showed Jamie. And then I watched it again. Tears streamed down my face as I watched him answer questions and say words.  I LOVE this little boy. He is Cooper a year from now. The mom gave me more hope than I ever thought possible.

It is going to happen for us. I just know it.

 

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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13 Comments

  1. Rowan on April 14, 2014 at 2:03 am

    Hi Kate,
    Oh the bargaining! This is a great post. I remember reading something that Jenny Mcarthy wrote in her book, she said something like – ‘I made a deal with God that if he helps me to cure my son of Autism I will spend the rest of my life educating and helping other Moms to do the same for their children’ – and I spent a long time trying to out bargain her! I feel so ridiculous now. Desperation will make us do lots of weird things!
    I know I have mentioned it before but Pip has good days and bad days too, days where she is here and present and social and talking a lot and playing tea parties and doing all the typical things and I get really excited that things are coming right and that maybe she’s just delayed and she will catch up and this will just be a horrible phase that we will leave behind on and on I go. THEN the next day she will tantrum, obsess over the ipad, want to lie about with her pacifier, hang off all the furniture, say the same script over and over again. I have asked every professional why this happens and all they say is that SPD is like that. It’s not consistent, some days the sensory system gets over loaded and some days their little nervous systems can cope. All I know, like you, it’s bewildering.
    Lovely reading as always.
    R x



    • Avatar photo findingcoopersvoice on April 14, 2014 at 2:13 am

      Yes! I just love your comments. I think we are very similar mama’s! I can outbargain with the best of them too. I have even said things like, “make me sick. Make me have autism. Just don’t give it to my kid.” Crazy, right? It doesn’t work like that.

      Here is what I tell myself. Thank GOD that I have a kiddo that has good days. Some kids don’t have these kinds of days. And I can’t imagine. Thank GOD that Cooper laughs and plays and loves hugs and kisses. Today, I was trying to get him to pee on the potty and he kept kissing me over and over again so he wouldn’t have to sit there. My heart pretty much melted. So, Yes, I have many, many bad moments but I get lots of good ones too!



  2. thespectrumscene on April 14, 2014 at 3:35 am

    Hold on to hope. Keep working with and for Cooper and loving on that precious boy. Every bit of laughter, every hug & every kiss is a priceless message. I know you know this, but I also know I sometimes need reminded. 🙂



    • Avatar photo findingcoopersvoice on April 14, 2014 at 1:45 pm

      Thanks! I do need to hear it sometimes!



  3. Jenn Soehnlin on April 14, 2014 at 3:50 am

    Been there, done that, still do that sometimes. I think I watched the same video you’re talking about. I couldn’t watch it more than once, because I get jealous of the words and then I fear Kiddo won’t be talking like that when he’s that age and so I just watch those videos once and click “like” and I really do like it and am happy for them. I can’t watch more than once though, or I’ll start playing the comparison game and I hate that game. I do like watching the videos though, because it gives me hope that it will get better. And it will. I just hope it’s soon!! 😉



    • Avatar photo findingcoopersvoice on April 14, 2014 at 6:38 pm

      I am like that too Jenn. Most of the time I don’t watch them. Often I border between being sad that Cooper can’t talk and then said when I look at the way Cooper might talk. It’s a lose -ose situation for me. But this video called out to me. He looked and sounded like Cooper. My heart burst when I saw it. I looked at Jamie and said, “I want this. I don’t care if he doesn’t sound perfect. I just want to hear words like this.” Hugs to you!



  4. Cyn on April 14, 2014 at 4:39 pm

    *hugs*
    I know THIS is hard because I’ve been there too with my son. It is very complicated why speech doesn’t happen or is very slow to start. What I have gleaned from our journey is that all you can do is do everything to nuture and build neuro pathways. Children’s brains before 6 are changing like crazy…and still up to age 9. Think of a child with developmental delays of having their wiring in the heads looking like the pile of Christmas lights on the floor…all tangled up and way too much to have to untangle but you have to find each and every string and untangle it. One by one. It is very frustrating….but live in hope:) Once the sounds come…it doesn’t mean words follow. Word approximations that only you can understand which will lead to more frustrations which I know you would take right now. Just hang in there:)

    After a big snow fall its so hard to walk in the snow unless there is a path before you already trodden. Think of how much work our children have to do each and every day…every hour…in order to learn what comes easily to other children. Cooper will have hard days…my advice is to start tracking the days on the calendar if you are not doing so. For my son by Friday he is full of anxiety because he has held it together day after day and worked so hard. He is 6-1/2 and 2 years ago getting to Wednesday was hard. He needs down time by the weekend like any other child but more. Its taken time for us to learn as a family what can make a day harder for him and how we can try and navigate it within reason to avoid the pit falls. Its not easy and harder when they can’t communicate. Does Cooper have another way to communicate with you on the hard days? Visuals can work wonders when they are having a hard time because it seems to give them immediate ideas to process without having to push themselves so hard.

    I want to also say that its okay to still be struggling inside with how you feel about all of this because its not easy. Everyone finds there own way in the end and you will too. Just remember don’t push him too hard….learn as much as you can and take care of yourself.

    2 Very helpful programs that helped us:

    1) Triple P Positive Parenting
    2) Hanen Centre “It Takes Two” and “More Then Words”



  5. Kate @ Did That Just Happen? on April 14, 2014 at 4:57 pm

    I’m positive bargaining is normal, and so is holding on to hope and inspiration. 😉 Fall 7 times, get up 8.



    • Avatar photo findingcoopersvoice on April 14, 2014 at 6:35 pm

      Exactly!



  6. the jay train on April 14, 2014 at 5:18 pm

    I get it. It sucks big time. If you feel up to it, you can read something I wrote back in August 2011. He was 4 at the time.

    http://lifeonthejtrain.wordpress.com/2011/08/17/talking-is-a-big-deal/

    My son has come a long way since then and yes, he’s still autistic, and yes we still struggle with some behavioral issues, but his ability to talk to us has made a world of difference. Don’t give up. Have hope.



    • Avatar photo findingcoopersvoice on April 14, 2014 at 6:31 pm

      Going to read it right now! Thanks for sharing.



  7. spectrumwarrior on April 14, 2014 at 7:14 pm

    Hold on hope! My son did not start talking till he was 3.5 and then it just started flowing. By 4 he had 3 word sentences and by 5, although a bit behind his age you would have never known that this child standing before you didn’t even say mommy and daddy till he was over 3.5 years old. Your persistence and drive will help him succeed but it just may come when he decides.



    • Avatar photo findingcoopersvoice on April 14, 2014 at 7:48 pm

      Love this!!!! I can’t even tell you what stories like this do for my well being. They keep me going. I can’t wait to hear his voice!