Yo soy La Lay

adventures in family, faith, and Down syndrome

Don’t be a cry baby. (Please?)

Anyone who thinks that people with Down syndrome are eternally happy should come spend some time with us from 6:45-7:15 on any given night.

Good. Lord.

The phrase “scream like a banshee” has taken on a whole new meaning since our sweet little booger has decided that bedtime simply isn’t her thing. With every wail, I can hear her cursing us for leaving her in the dark. The best part is that her timing is unsettlingly perfect – just as you breathe that sigh of relief because finally, she’s calm and reach to take a sip of your wine, BAM. Just kidding! If she had words, I can guarantee she’d be yelling the ones you wouldn’t say in front of Granny.

I can’t say that I blame her for being upset. When you live as thrilling a life as we do, it must be devastating to miss out on the fun. Between the crossword puzzles and episodes of House Hunters that have been on the DVR for about 2 years, I sure wouldn’t want to sleep through any of the awesomeness.

We’re just bustin’ down stereotypes, one bedtime routine at a time.

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Lesson #20: Developmental Therapy is a thing

This is part of the 31 for 21 Blog Challenge!

Pre-Tessa, I had heard of Physical therapy, speech therapy, and even OT wasn’t completely lost on me.  However, Developmental therapy (DT) is a totally new concept.

We get DT once a month, but now that Tessa is sitting, we will increase to once a week in November-ish.  A developmental therapist is kind of like Tessa’s first teacher.  She works with her on intellectual development – concepts like “in and out,” cause and effect, object permanence, all that fun stuff.  During sessions, we play with toys and watch to see how Tessa interacts with her environment.  In the beginning, we worked on getting her eyes to track objects and to show interest in faces, then toys.  Our DT also works with our family to get us connected to the Down syndrome community.  We talk about our own emotional development, our concerns and frustrations… I don’t know if this is in her job description, but Shannon has been a bit of a social worker along with Tessa’s DT.  🙂

Right now, our major hurdle has been Tessa’s startle response.  When anyone (besides Ellie, that is) laughs loudly, Tessa displays the same kind of reaction that you might see in a child who was just given a shot.  Sweet little pouty face, big fat tears…. She has the same reaction to dogs barking.  Other loud noises don’t affect her at all.  We sit right next to our Praise Team (essentially, a band) in church and she has no negative response to the music.  When we play peek-a-boo with her, she often cries when we reveal our faces.  Some strong smells bother her as well.  I know that many people who interact with Tessa feel bad when she gets upset.  However, it’s important for them to know that we would rather teach Tessa to react appropriately than to create an environment in which she doesn’t have to deal with this stuff.

Sometimes, children with Down syndrome can have a sensory processing disorder that causes them to struggle with different types of input.  We don’t necessarily think this is something that Tessa is dealing with, but it’s certainly part of our conversation about her development.  It’s something that we will continue to work on with her DT and also in occupational therapy.

Soon, Tessa will be at four therapies a week.  Sometimes, that can feel like a lot.  Right now, two therapies (Speech/OT) are at daycare and two (PT/DT) are at home.  We just recently changed her Speech time so that I could potentially be there to help out with that.  Recently, she hasn’t been able to get through a session of speech without crying uncontrollably or shutting down and going to sleep, so we hope that my presence will help her manage her feelings better.  So far, it has worked.  I don’t know if it is realistic to think that front-loading all of the therapy will help her in the long run or not, but if nothing else, the consistency in our weekly routine is nice.  Plus, the therapists give some really great tips for working with Ellie, too.  She is more work than her sister most days!!

Still cute when she cries.

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