Seeing the Diagnosis

“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”

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Probably his favorite memory from the holidays was finding this waiting for him (WITH BATTERIES) at Mom-Mom’s

Anyone with children, or daily exposure to young ones- has probably heard those phrases coming from a few different toys.  Fisher Price has done this very lovely thing and used the same sing-songy female voice to say “It’s learning time! It’s music time!” when you press certain buttons on their toys. Most distinct examples are the Laugh and Learn Puppy and the schoolhouse frame you see in these pictures.  IMG_5481

Evan loves this toy.  No, he LURVES it. With every ounce of his bouncing, joyful being.

Here’s the catch.  I do NOT love it.

In fact, I get a knot in my stomach when I see it in the store or at someone’s house. (please do not feel badly if Evan has played with it at your house, believe me, this is my hang up, not his)

I used to love it.

Evan started a cause and effect game with us using this toy.  He would open and close the mailbox until he would get the right combination to produce the alphabet song.  Then he would glance at us (mommy and daddy) to wait for us to sing the song along with it.  We were so tickled that he figured that out and he was connecting with us through this game. This was when he was about 17 months.

Notice the abundance of musical, electronic toys.  This was before we visited Dr. Mervis and were advised to get rid of all the toys that had on-off switches and incorporate more “old-fashioned” toys. This suggestion was made to encourage Evan to do more engaging play that required him to use his imagination and also communicate with us when he needed help.

Herein lies the title of this entry.  When Evan encounters this toy, or any toy that is similar in fashion- one that has a switch that turns on music, action, or lights, he becomes entranced and very involved in the toy.  It is difficult to get his attention and even more difficult to elicit any communication.

My heart literally ached on Christmas afternoon when my dad’s wife (he calls her Mom-Mom) came in the room to greet Evan and he didn’t even look at her. Not a glance. He was busy roaming around the schoolhouse frame and turning on and off those switches he remembered so well.  She hugged and kissed him anyway and went back to cooking.  Honestly, she did not seem to be bothered by it at all. She was happy to see him and thrilled that he was happy.  And there I sat, knot in my stomach, blinded by the diagnosis. Blinded by the lack of engagement that we have been working so darn hard to increase.  I didn’t see my happy son who was being pleasant, even-tempered, and occupying himself with a toy he loved. I was seeing the disability, the developmental delays. The very thing I preach about looking past.

There are moments, days, weeks, that can go by where I am thrilled by Evan’s progress, excited to discuss Williams Syndrome with friends, touched by the smiles that Evan elicits from strangers.  Then there are days like this. When I wake up, filled with hope and expectations of a wonderful day spent with family. And by the end of the day, Evan is in the backseat of the car, scripting away, “It’s learning time!” It’s music time!” and I have to fight back tears. The word defeated feels accurate and awful at the same time.

(As I type this I can hear him singing along with his beloved Signing Time DVD, which also repeats, “music time, signing time, story time,” etc over and over. He does love Rachel. I’ve often said he would run off into the sunset with her or with the ladies from Baby Babble.. but that is another story.)

A quick moment I grabbed

A quick moment I grabbed

Lately I have been having a more difficult time embracing the joys, embracing the progress that I blogged about so recently. I know it is due to the holidays. Due to the stress I was under at work this past month.  Due to the hustle and bustle of non-stop gatherings, entertaining, and changes in schedule that occur for everyone this time of year. I struggled with whether or not to write about it.

Because I do strive to see the positive slant on things.

I do realize how incredibly blessed we are.

But it would be a disservice as a writer (and a deeply sensitive one at that) to ignore the ugly truths that creep into our lives.  To not acknowledge that being a parent of a child with special needs is hard. Capital H. Hiz to the ARD.

Being a parent is Hard.

Being a human being is Hard.

But being honest about it is freeing. Knowing that the Hard is worth it.  Knowing that there are plenty of others out there who are also dealing with the Hard. And we don’t have to pretend that it is easy.

We just have to admit that this happens too:

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and this:

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and this:

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Thank goodness there is also Joy. With a capital J.

6 Comments on Seeing the Diagnosis

  1. Karen
    January 1, 2015 at 9:50 pm (2 years ago)

    Erin life has no set road. Just keep positive and loving ….then you are on the correct road 🙂

    Reply
  2. Ashley Huntington
    January 3, 2015 at 5:14 am (2 years ago)

    Thanks so much for your honesty. My hubby and I love your blog, and I know he was encouraged by this because it helps him know he’s not alone. I don’t think I can recognize or put words to these moments, but your words help me. Thank you…for finding the joy and recognizing the hard.

    Reply
  3. Erin
    January 3, 2015 at 9:58 am (2 years ago)

    Karen, we try our best. You definitely lead us by example. Ashley, your comment is exactly why I keep writing and sharing. As I pressed publish on this last entry I felt a little strange and uncomfortable because of how raw the emotions felt. I really do strive to see the glass as half full and most of the time I manage. But it feels disingenuous to disregard the really tough moments. We will continue to work with Evan to help him regulate, and be more engaged with his surroundings, but sometimes it just stinks to have to “work on” it. Thank you ladies for your thoughtful comments. They really keep me going.

    Reply
    • Ashley Huntington
      January 5, 2015 at 7:39 am (2 years ago)

      I go through spurts. Times where I “work on” things, and times where I let that go. I used to be hard on myself for it, but I’m having more grace for myself knowing I can only do so much. I have more energy for the work when I have breaks from it. 🙂 you’re doing awesome , mama.

      Reply
  4. Lauren
    March 8, 2016 at 9:52 am (1 year ago)

    I read your blog through tears. Although our daughter will be 24 yo, I remember her diagnosis day clearly. They didn’t have any way of testing for Williams Syndrome back in 1992 when she was born. I had been around enough babies to now something wasn’t right. She was “floppy”, she hated to eat, she’d scream, scream, scream… or sleep. She couldn’t roll over, hold her bottle or lift her head. Then in 1994 they mapped DNA and developed the FiSH test. A routine blood test broke our heart on March 21, 1995. Of course, the geneticist called us into the office to break the news. I remember standing there, paying for the service and words that were so frightening, thinking that the birds would never sing and the flowers never bloom again.
    Well, I was wrong. Our daughter is a fighter. She learned how to walk – and talk!- at 18 months. She learned how to ride a bike at 6 yo, w/o training wheels. She still hates to eat, and is so fresh, the mouth on that girl! All the things she’d have to do, being in special ed, having to see specialists and therapists, the meds, the tests. Not to mention the things we hoped and dreamed for her now seemed out of reach, going to college, driving a car, making her own successful life.
    She has a successful life. She works part time and attends a day program where she has many friends. And she’s happy. That’s all that really matters.

    Reply
    • Erin Putman
      March 28, 2016 at 1:23 pm (1 year ago)

      Lauren, thank so much for your comment. I really appreciate you sharing your story about your amazing daughter. One of the most important parts of this journey for me, is hearing stories from parents who have walked this road ahead of us. It is so valuable to hear your triumphs and struggles. Thanks again.

      Reply

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