Abby · autism · confessions · Down syndrome

Sometimes, words just don’t work.

Abby is two. She’s every bit the two year old that my other two year olds were with an added dose of diva. She’s been SPOILED. She’s adored everywhere she goes and gets what she wants from her brothers. And we are paying. She’s been throwing fits like you would not believe (or would). Thus completely shattering the stereotype of all children with Down syndrome being loving and cute ALL OF THE TIME. She is most of the time. But not all. And she can throw a tantrum with the best of them.

And, as I found again today, so can I.

Other than the behavioral issues we are addressing, a huge cause of Abby’s fits is her inability to communicate her wants and needs. One of her many tantrums today lasted for over an hour.  I held her and rocked her as I tried to calm her down. It brought back the YEARS I spent doing that with Casey. Trying to figure out what was going on with him. The difference between the two is huge, though. Though both could not communicate at this age outside of a few signs, Casey could not be soothed. He’d spend hours upon hours screaming, and there was nothing I could do to help him through the storm.

While I rocked her, I scrolled through my Instagram feed and saw normal people living normal lives. Pictures of family outings, potty training, eating normal foods with normal liquids, all with captions of the words their children, lots younger than Abby, are using.

I was jealous. I was sad.

I tried to suck it up. I tried telling myself with positive affirmations that things were going to be fine. I tried to keep my anxiety relegated to the dark corner of my heart where it should live. I tried to remember all of my blessings and how far Casey’s come.  I tried to not remember the thousands of hours spent in speech therapy with him. I tried not to think about the thousands more hours I have to spend in speech therapy with Abby. I tried to have hope that she’d one day be able to communicate fully.

And then I stopped trying and cried. The frustrations fell with the tears, and I felt myself relax. All of the time I spent trying to convince myself with positive words only made things worse. Letting the frustration go in the form of a very ugly cry does not mean I do not acknowledge the good in my life, of which there is an abundance. It just means that there are different avenues to healing. Sometimes, words just don’t work. I needed to cry.

Both Abby and I stopped crying about the same time and sat sniffling and hiccuping for a while. She got through whatever it was that she needed to be pissed off about and I got through mine. We both threw a nice tantrum and moved on.

For now…

17 thoughts on “Sometimes, words just don’t work.

  1. Lexi,

    I really related to the scrolling through pictures. When we were living in the hospital with Madeline and again when she was home and nurses were coming and going and John was living in Batman land. I would do the SAME thing. And feel the same way. Why did THEIR life seem so PRETTY. Sure it isn’t but that’s what it looked like to me. Tears sure can be healing. As I read this, I, of course, am jealous. My Madeline would have probably been the same way. She was on the path to Diva Hood for sure. You Rock!

    1. Amy, there are days I need some perspective. And though that’s not what you meant with what you said here, I need to remember how lucky I am to have her.
      It’s crazy to think there are more people out there who have lived both the Down syndrome and the autism worlds.
      Love you, Lady

  2. It’s like we have the same kid seriously. Jacey is about a month younger and displaying all the joys of meeting the tantrum milestone with a vengeance. Why is it they always manage to hit the annoying milestones without any issues?? And good on you for letting go!!

    1. ahahaahahahahahhhhhh. I hadn’t even thought about it that way! JEEZ! I’m off to throw another tantrum….

  3. Thank you so much for sharing this. My daughter had a day last week where I had to hold her down kicking and screaming to do her respiratory treatments. Her speech and processing disabilities prevent her even at 11 from effectively expressing so much of how she’s feeling. All I wanted to do was throw myself down and kick and scream right along with her!! I can be so frustrating.

  4. I know we will probably never meet again, and the time we spent in the trailer court in Logan is forever ago. But I want you to know that I appreciate all you have to say, and that you blog about your good moments as well as your difficult moments. I rarely leave comments, because I rarely have anything to add, but I felt like saying something tonight. I love you, and admire you. You make me stronger. Thank you!

    1. Kristina,

      I can’t thank you enough. Your words mean SO much to me. I hope that we will one day hunt each other down….I want to meet your kids! Thank you again.

  5. I really related to your post Lexi. As you know Lily suffers also from a huge dose of cuteness, and because of that she gets away with more than she should at times. Many of Lily’s tougher moments are due to her lack of communicatin a need and she does have some verbal ability albeit quite delayed. For many, during a time of crisis, words get lost. I believe for our kids that is even more true. As a mom, when Lily is struggling or melting down, I so desperately want to comfort her. Instead I am usually met with a slap to the face or a bite on my shoulder and I feel so defeated as a mother. Lily just turned 7, and I do recognize how far she has come, but there are times that I am also reminded still how far behind she is. There is nothing better than a good cry, however, I typically don’t allow myself. I guess I feel when I cry that I am conceding to a loss or feel weak. But your are right letting go of my emotions is a part of healing, and I need to allow myself to heal as well. Thanks for the reminder!!

    1. You make a fantastic point. So fantastic, that I might put it on my wall in big letters. “cry…so you don’t have to run”. I hate running.

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