Sunday, January 24, 2016

Waiting for Maturity to Kick in: Down syndrome and Behavioral Challenges

Josie will be six in a couple of months (*sniffle* I think I have something in my eye) and it seems like we're entering a phase of increasingly challenging behaviors.  I have had many friends with children with Down syndrome in Josie's age range frequently complain to me about various challenges including aggressive behavior/hitting, running away, and general defiance/obstinacy/disobedience.  

Josie is certainly not above a little non-compliant behavior.  Take, for example, our trip to the zoo last fall.  Initially, she did fine.  She rode in the stroller with Lydia and looked at the animals.
The attractions maintained her interest for a little while...
...but at some point, she decided she was over the zoo.  You can see it starting to happen in this photo:
By the time we made it to the Desert Dome, Josie was done.  Bring on the whining and adamant "NO!" every time we suggested Josie check out something cool.
When she pulled the umbrella down over her seat and retreated into solitude, it was quite obvious that no amount of effort on our part would extend her interest in this excursion.  
What would have happened had Josie not been in the stroller?  Well, she wouldn't have made it nearly that far around the zoo because her gross motor skills (and inclination) do not allow her to walk great distances.  And once she decided she was done, we would have had a child face down on the pavement in protest.  

Like many of my friends who are parenting children with Down syndrome, I get frustrated by Josie's behaviors.  As a good friend and parenting mentor explained to me, our kiddos have delays so the behavior concerns that affect typically developing children will affect our children, too, however it won't happen until an older age and it may take longer to graduate out of these stages.  

But they are just stages.  And our children will graduate out of these stages.  When I get consumed by the frustration, I stop and remind myself that my sister, Leanne, went through all of this, too.  My mom will testify that getting her out the door for school during her elementary years was not always a pleasant experience (I'm pretty sure when Mama Hop reads this, she will have snorted right about now).  
But look at Leanne today!  She wakes up, gets dressed, eats breakfast, and makes it out the door without supervision and prompting.  She uses the restroom without supervision and prompting.  She does not run away from my mom nor does she flop on the floor in protest.  She exhibits socially appropriate behavior in public.  
Leanne acts like an adult because she is an adult!  Funny what a little maturity will do!
And while we are fortunate to have an older role model for Josie who helps us keep things in perspective, we do have our difficult days just like everyone else.  And we certainly don't claim to have all the answers, nor do we consider ourselves perfect parents by any stretch of the imagination.  
The one resource I turn to when I'm at my wits end is behavioral therapy.  I've blogged before about our struggle to get Josie to end her reliance on her G-tube and to learn to eat orally (to read those posts, click HERE and HERE).  During this time, we sought the help of some incredible pediatric behavioral psychologists who taught us some really simple but effective strategies for encouraging compliance.  Some of the things that we learned seem like such common sense that I'm embarrassed to admit that it took a PhD telling me for it to click.  But I do believe when you're in a frustrating behavioral situation, the stress of it clouds your judgement and inhibits you from seeing it objectively.

That being said, while we wait for the maturity to kick in, here are a few basic tips that have helped us:

1.  First,  ____.  Then, ____ - When we learned this, it applied to eating.  First, take a bite (non-preferred activity).  Then, you receive an incentive (preferred item).  Now, this strategy is used with all of our kids, regardless of chromosome count, and it is a life saver.

For example, if Josie is pitching a fit, not wanting to climb the stairs, I may cue up Taylor Swift on my phone.

First, climb the stairs.  Then, Taylor.

As long as she's heading up the stairs, the music will be playing.  If she flops down, the music stops immediately.  Her preferred item is contingent upon compliant behavior.

* Tip - this strategy is most effective when the preferred item is reserved only for special occasions.  For example, kids love technology.  My kids would walk through fire for some iPad time.  So we keep the iPad restricted and out of reach.  They earn iPad time through good behaviors.  If they had 24/7 access to the iPad, they likely wouldn't have any motivation to clean the playroom to earn it.  Thus, behavioral therapy stresses the importance of keeping a few coveted items restricted.
2.  An ounce of prevention is worth a pound of cure - In other words, it's better to prevent some behavioral problems from happening than to try and fix them once they've started.  Embarrassing story alert: During the whole oral feeding journey, I was complaining to Josie's behavioral psychologist that every time I set the cup on Josie's tray, Josie would throw it.  Guess what she said: "Stop setting the cup on her tray."  Light bulb moment!

You know the problem I mentioned earlier with Josie's tendency to flop on the ground in protest when she doesn't feel like walking?  Prevention: Josie rides in the stroller.  
That's not to say that we don't practice walking obediently by mom's side.  We just don't do that when I'm by myself with 3 kids trying to be somewhere on time.  We practice Josie walking in a low-pressure situation where I can focus on just Josie, or when I have help; and when we're not in a hurry.  Otherwise, she rides in the stroller.

Another example: Josie has sleep problems (I'm sure this will be discussed in a future post).  I found myself in the frustrating nightly ritual of going into her room in the wee hours of morning, taking Josie's books away, turning the lights off, and escorting Josie back to bed.  Then - light bulb moment - we disabled the overhead light in Josie's room.  I can't stop her from waking up at 2am (hopefully her CPAP will stop that), but I can keep her from turning on the lights and hosting her own personal book club at this outrageous hour.  It sure discourages the 2am antics when you can't see!  May as well roll over and try to go back to sleep.  Or shout the alphabet loudly and slowly from your bed.  I haven't figured out a prevention for this yet.

3.  Shhhhhh! - Josie's behavioral psychologist in the tundra taught me this one: We've all been in that embarrassing situation where your kid is throwing a fit in the grocery store because they want something.  And yes, you could abandon your cart full of groceries and walk out, but that's not always practical.  Especially, if you have one of those crazy families that expects to eat and this is your only chance to get to the store.  So if you need to give into your child, to shut her up so you can accomplish a necessary task in peace, first make the child do something for you.  Our go-to is "Shhhhh!" in which the child has to stop whining and shush herself.  I call this "Show me 'quiet'!"  Once the child has obeyed my request, I will honor her request.  That way, the child is not associating victory with fit throwing; she is associating getting what she wants with following mom's directive.  Josie is a BIG whiner so I employ this tactic frequently.
 4.  Tell the child what you want them to do; not what you want them to stop doing - I've heard this is especially important for children with Down syndrome as they tend to be more concrete thinkers.  Back to the cup throwing example - After some intensive professional intervention, I ended up cutting a circle out of construction paper and taping it to Josie's tray.  Instead of saying "Don't throw your cup," I would say "Set your cup on the blue circle."  We no longer have the cup throwing problem and we retired the blue circle.  But we still employ this technique.  For example, sometimes Josie will fight me when I try to fix her hair.  She will wave her arms in the air and try to push the brush away.  So, instead of saying "Stop," I say "Josie, show me 'quiet hands'!"  Quiet hands is a stance a previous occupational therapist taught Josie in which she folds her hands in front of her on the table.  Instead of excitedly reaching for whatever object the OT whipped out of her bag, Josie had to do "quiet hands" to demonstrate that she was prepared to focus and listen to directions so they could begin the next activity.
In conclusion, we can't offer solutions to every parenting dilemma - special needs or otherwise.  (But an ABA therapist is a good place to start.  To find one in your area, click HERE).  However, we can offer hope and encouragement to the parents of our little chromosomally enhanced friends in the form of this kind and charismatic lady we refer to as "Aunt Leanne."   The journey can have it's tough moments but when you look back someday, that momentary frustration will have dissipated into immense gratitude for the enriching experience that will leave you forever changed for the better.


  1. Thank you so much for this post! My nearly 6 year old with DS has been showing more and more of these behavioural problems and I very much appreciate your tips as well as just knowing I'm not alone!

  2. Thank you!! Kate's newly five and still exhibiting very similar behaviors. The First, Then tactic works well with her. I'm going to teach her a few of the other ideas you have (and I think I might need to permanently tape a circle for her cup and one for her plate to the table. Sigh.

  3. THANK YOU! The line about how Leanne acts like an adult because she is an adult was sort of an a-ha moment for me. We're not always the most patient with behavioral challenges, but it's good to remember that this is normal and maturity will develop with time

  4. What a wonderul post full of honesty and excellent information! Even though I've worked with ABA therapists my entire professional career, it still throws me off when we struggle with behaviors with our daughter. It's easy to get caught in a loop of fear that this phase won't pass but you have excellent insight with Leanne and I'm beyond grateful that you share your stories!

  5. Standing Ovation! Well done! Thanks for putting this all together in such a concrete, intelligent, and helpful post. And as far as the "preventing behaviors" instead of trying to "stop them once they've started" I think this pretty much sums up my life mission to keep Addison from bolting. The door alarms, the buckled wagon seat, the strict "walk into the house from the car", the limited outside play time, making the kids hold hands as we transition from van to new place, and the big house switch to a safer neighborhood with a fenced in yard. Here's hoping her maturity not to bolt kicks in before I stroke out. (-; All that to say- I love the way you have phrased this post. I have been doing several of these things without realizing it, and it helps to be able to describe it this way!

  6. Even though I don't have a DS child of my own, this post was even helpful for me. My 6-year-old son is a "go getter" and I feel like I am forever more saying don't or stop or NO. Lol I will try rethinking my corrections into commands. I hate sounding so gripe-y all the time.

  7. Love this post! Thea's our youngest of three girls and almost five, and I always feel bad using a stroller. But, again, the laying down in the parking lot isn't helpful either. We do several of these, but there are some great ideas here we haven't tried! Thanks! I have to admit that I appreciate the part about LeeAnn too. Bringing her anywhere is absolutely exhausting and it is helpful to know that it won't last forever.

  8. Thanks for writing this post! I'm a long-time Instagram follower of yours, but a new blog reader of yours. Although I'm not a mom, I work with a very diverse group of kiddos and these tips will be handy to try tomorrow and beyond.