Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #5: There is no “should”

on October 5, 2014

This is part of the 31 for 21 blog challenge!

As is well documented on this blog (for example, here, here, and here), I often struggle with when Tessa will learn new skills.  Lots of moms whose kiddos have special needs ask those questions.  Impatience is just part of the game sometimes.  When a baby is born with Down syndrome, the milestone charts get thrown out the window.  We all know our kids will get where they are going; it’s just a matter of when.  Waiting for when can be frustrating.  The feeling that she should be able to do something nags a little at the back of my brain.  From time to time, I freak out that I’m not working with her enough.  And yet….

In the ebb and flow of my feelings about Down syndrome, I often find it immensely liberating that Tessa works at her own pace to meet her milestones.  Milestone charts exist for a reason (above and beyond the ability for moms to compare their children 😉 ).  They don’t really apply to Tessa because she has a diagnosed disability and we have known, since birth, that she’s on her own schedule.  She has no should.  However, the knowledge of when things should happen is actually vital to the typical child.  When typical babies are born, milestone charts assist parents and doctors in determining if a child needs extra support or may have special needs.  Unlike with Down syndrome, you cannot see a learning disability, autism, or a sensory disorder by looking at a child.  Milestone charts, or knowledge of typical behaviors and development, help diagnose and support parents.  They ensure that the child can receive interventions at the earliest possible time.  We already have our diagnosis, and while a diagnosis certainly doesn’t make life any easier, the blessing of knowing what the diagnosis is is not lost on me.

For both Ellie and Tessa, at the beginning of each Well-Baby check-up, the nurse asks a series of questions about their development.  When I have to answer about Ellie, I feel pressure.  If she cannot do something, I go home and google when she should have mastered it.  When they ask about Tessa, I just laugh.  Many times, I get to say “yes, she can.”  Sometimes, it’s a “not yet” or “we’re working on it.”  But there’s no pressure.  I have no need to compare what she can do to anyone else,  because there is no should.  And that is empowering.

This post was inspired by some moms in my Rockin’ Moms group on Facebook, organized by the Down Syndrome Diagnosis Network.  Thanks, ladies, for asking great questions and being so supportive.  🙂

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2 responses to “Lesson #5: There is no “should”

  1. lisa170 says:

    It’s frustrating hitting those milestones. At Isaac’s one year check he was walking, babbling, clapping and a dozen other things that make him bang on average and I got the concern voice because he’s not pointing yet. Too much pressure for a one year old these days.

  2. Joanne says:

    I was asked if Peanut has discovered her feet, yet. My answer was, “who needs feet when you’ve got hands?” Honestly, she sits and holds them up and stares at them for hours. Like they’re the most fascinating things. It’s actually quite entertaining. Meh. No should, indeed. Our babes get to it when they get to it.

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