I Can't Run or Hide From This

542fa96a51f5a51a9b3b6cc7da9e277bI am having a scared day. I am so freaking scared that I want to crawl under my desk and cry. In the fetal position. I can’t take this worry anymore.

I made the appointment with the developmental pediatrician. CHECK. Being ok with the 8 month waiting list. CHECK.

I spoke with the early childhood screening woman and found out that because Cooper was part of the Help Me Grow program (early intervention) he can’t be screened until he is 3 years 6 months. And they don’t do screenings in the summer so he can’t technically be screened until the fall. Which means no developmental preschool. I explained the situation to her and let her know that this is unacceptable and she said she would speak with her boss about. Cue freak out. CHECK.

I learned a bit about the Pacer program. They help parents advocate for their kids within the school district. I don’t want to make any more phone calls or do any more evaluations. Laying head on desk in exhaustion. CHECK.

And lastly I called and did a 45 minute intake with an Autism clinic. I didn’t want too. But I did it anyways. I did it because Cooper is 3 years and 3 months and he has no words. And I realized that my baby might never talk. (I have this realization every few weeks or so). And it hit me like a ton of bricks. I am on the waiting list. CHECK

I told them all about Cooper’s delays. All about his quirks and his challenges. And I think I started to turn invisible.

I can’t run away from this. I can’t hide from this. And I certainly can’t beg, bargain or fight my way out of this. It’s so freaking real that it takes my breath away. But the trick is to just keep breathing. Because I have to go home now and play with my kiddos. And smile. And pretend that it is all going to be alright.

 

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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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15 Comments

  1. A Miracle In the Works on March 12, 2014 at 8:50 pm

    Oh mama. You’re doing the best that you can. I would take a deep breath and reassess tomorrow. Everything will be ok. It might not be what you envisioned but it will work out. Can you get on a wait list for a cancellation? Hang in there. Hugs.



  2. Jenny Michelle Rapson on March 12, 2014 at 8:53 pm

    What? Come on Minnesota! And I thought you didn’t end up going with Help Me Grow? That is crazy…I’m praying hard on this one. Hard for an opening, a loophole, good news, encouragement, strength, faith, hope. I just believe in Cooper, and I don’t even know him. But I feel this way because of everything I’ve heard you say about him and because of my own experience with my crazy children. Hope you can go home and breathe and have some good times with your boys tonight. I know the process is super sucky. Hang the heck in there, Mama.



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:11 pm

      Hey lady. Dang Minnesota is RIGHT! We ‘did’ the Help Me Grow program for a hot minute. They had nothing to offer us so we went the private route. This is totally a weird thing. Even the lady on the phone couldn’t tell me why. She said she was going to talk to her boss about it. So, I wait. I did go home and play with the kiddos and then did a bad ass Insanity workout. That helped clear the head!



  3. lundquistclan on March 12, 2014 at 9:02 pm

    I hope and prayer for you for cancellations and changes to the program. We were told over a year wait for the Fraiser Institute and we got in about 6 months later they had a cancellation. I couldn’t believe there are only about 2-3 places in the WHOLE state you can take your child. Of course a 3 hours away from us but you do what you need to do for your child. Good luck!!!



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:10 pm

      Hey lady. I made the appointment at Fraser too. The guy on the phone was really nice but the intake was emotionally hard. I’m just sick of it. He thinks that he can put Cooper on the fast track and get him in within 3 months because of his age. At this point, I am ok with whatever. I made the appointments. First step was big for me. It’s 3 hours away for us too. I am so sick of having limited resources. Ugh!



  4. Deborah the Closet Monster on March 12, 2014 at 9:37 pm

    I wish there were anything I could do from here but to say I am sorry, and rooting for you.



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:08 pm

      Your comment makes me smile! That’s helpful enough. Thanks for the positivity!



  5. jmhart4 on March 13, 2014 at 12:49 am

    Waiting is the hardest part, but you are definitely doing the right thing. You’re doing everything you can. I know it’s hard, and I’m by your side!



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:08 pm

      You know what I keep telling myself…knowing doesn’t change anything. Yes, it will put my mind at ease (which is huge) but it won’t change the day to day struggles with Cooper. Yesterday was tough. I seem to have a tough day every couple of weeks of so. Oh, well. Powering through. I’m on your side too friend! I sure wish we could get our kids together. I think they would be besties.



  6. ontheupcyclemom on March 13, 2014 at 1:02 am

    Thinking of you be strong. You are a great mom your son is lucky to have you as his mom and advocate!



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:06 pm

      You make me smile! Thank you!



  7. VeganDee on March 13, 2014 at 11:41 am

    The universe owes you a favor. I am going to start the petition right now. Keep writing. Keep breathing. You are a super strong mama.



    • Avatar photo findingcoopersvoice on March 13, 2014 at 1:05 pm

      I love it! I’ll sign that petition. I hope you are doing well. I think about you often.



  8. mummytohenry on March 13, 2014 at 4:00 pm

    Sending lots of hugs hunni xxx



    • Avatar photo findingcoopersvoice on March 13, 2014 at 4:05 pm

      Thanks lady!