Her best behavior

May 31st, 2011

Some of the first questions I had after hearing about Verity’s extra chromosome were about behavior.  Especially as I began to hear of the legendary stubbornness of people with Down syndrome.


We had some experience with that before Verity came along.

And Verity herself?


We’re in for some more experience!

What we didn’t know was how Verity’s cognitive delays would affect the way we needed to help her learn proper behavior.

If you’re an experienced mom of older children, you know the quiet chuckle you feel inside when you hear a very young person state their strong opinions about the correct way to bring up children?

Well, I’m not going to expound on the best ways to help a two year old or five year old or ten or seventeen year old with Down syndrome to learn good behavior.  And if I did, I hope you wouldn’t listen to a word of it.

But here’s what we have learned so far about working with the behaviors of very young children with Down syndrome from those who do have experience.

I took my questions to a few friends.  Moms who have pleasant, courteous older children with Down syndrome.

They didn’t know it, but they came to a general consensus–

It isn’t that different from the way we reared pleasant, courteous children without Down syndrome.

The biggest difference, they all said, is that they didn’t need to start teaching the “why” of proper behavior as young as they did with their typical children.  A young child with Down syndrome can learn what is right to do, and know when he or she has done wrong just as a young child without Down syndrome can.

The next tidbit of information came from a book by John F. Unruh, Ph. D. titled “Down Syndrome: Successful Parenting of Children with Down Syndrome.” Dr. Unruh spent many years working with parents of children with Down syndrome, and learned a great deal from their collective experience.

In his chapter, “Is Behavior Important?” the author argues the premise that good character and proper behavior is every bit as vital as cognitive and physical abilities, if not more.

He gives a couple of unforgettable illustrations of this premise.  One was an incident he witnessed of an eighteen-year-old young man with Down syndrome who came home from school while his parents were entertaining some guests.  He straightened his tie, courteously asked them to excuse his interruption, and explained that he had just come from school and wanted to say hello before leaving to spend time with some of his friends.  He proceeded to shake hands and exchange appropriate pleasantries with each guest.  Then he kissed his mother and waved good-bye to the group.

Quoting the author–

“For the remainder of the gathering, he was the one and only topic of conversation.  Most of the guests were overwhelmed that anyone of that age group could be so courteous.  They really couldn’t come to grips with the Down syndrome part.  Some of the uninformed thought that this gentle behavior happened because of Down syndrome.  I assured them that this was not the case.  In three minutes he had lifted our spirits.  His behavior affected everyone in that room.  I managed to catch his mother’s eye before leaving and shared a knowing smile.  She knew–and I had some inkling–just what it had cost her to have that moment of happiness:  a lot of hard work and determination.”

He also gave an illustration of two hypothetical typists.

One was neat, punctual, courteous, and could type sixty words a minute without error.  She was a wonderful, competent girl who also had lost both her legs.

The other was neat, attractive, and capable of eighty words a minute without error.  However, she was moody, overly aggressive with her boss in front of the other employees, continually disrupted the other employees and generally made the workplace unpleasant.

Between the two typists, you would be delighted to have found such a great employee as the first, disability notwithstanding.  You would gratefully employ her for as long as she was willing and able to work for you.  The second probably wouldn’t last a whole week, regardless of how fast she could type.

He went on to explain that he had observed that among the cases from his files, the children with Down syndrome fell into two groups:  successful and unsuccessful.  Successful children were socially accepted, had a high quality of life, and were productive.  Unsuccessful children eventually ended up being institutionalized due to uncontrolled behaviors that nobody was able to change.

On taking a closer look, he was stunned to realize that in each group, the range of the children’s skills and abilities was equally broad.  Each group included children with greater mental challenges and fewer skills, children with mild mental challenges and many skills, as well as children in the middle between the two extremes.  It was not their skills and abilities that had influenced their success or failure in life, it was their behavior.

Not long after reading this book, I came across a fascinating article that vividly confirmed to me that we can have the same expectations of appropriate behavior of Verity that we have of our other children.  This article is written by Kathleen M. Feeley and Emily A. Jones, and is titled, “Preventing challenging behavior in children with Down syndrome: Attention to early developing repertoires.” If you are intrigued by this topic, it is well worth wading through the technical language to find the core ideas that the authors set forth.

Out of all this wisdom, we have collected a few principles that currently guide our training of Verity.

Nip poor behavior in the bud.  My grandmom says, “Don’t let them get away with anything.”  We intervene as promptly as possible when our children make a wrong choice, and that goes for Verity, too.  We don’t tell ourselves that our children will outgrow wrong behavior.  It is so much easier to pull a tiny weed than one that has grown tall and strong and firmly established.  Generally speaking (there are exceptions), if she is able to engage in an inappropriate behavior, she is able to learn not to engage in that behavior.

Train by repetition.  We model proper behavior for her and guide her through doing it over and over.  Just as we do with our other young children.  If they make a wrong choice, we require them to go back and try again, and do it the right way, with prompting and support from us as needed.  Practice, practice, practice.

Expect a lot.  We try not to do anything for our children if they can do it for themselves.  This is no less vital a principle for Verity.  An experienced friend warned me to especially watch for this, since we have so many older, willing helpers in the house.  We don’t let her charm her way out of the hard work we require her to do.  She could, you know!

Stay consistently in charge.  When she gets stubborn and decides she’s had enough of a certain activity, we follow the “One more time” rule.  This helps us balance her need to stay engaged while learning, with her need for the security of knowing for certain that she’s not the boss.  Meeting both these needs will optimize her opportunities and ability to learn from us.  Same as is true of our other children.

Be grateful for the determination underneath the stubbornness.  Don’t resent it.  It’s often easier to guide a determined child into a good direction than to encourage an unmotivated child to do just about anything.  We want to see Verity put that determination to excellent use as she grows older, same as we do with our other children.

Expect to work very hard and expect that hard work to be greatly rewarded.  We work in faith.

Yes, just as we do with all our other children.


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7 Responses to “Her best behavior”

  1. Joy says:

    Oh, how I just want to scoop her up in that last picture where she’s sitting all curled up! (and I’m sure you did as soon as you put the camera down!)

  2. Tami Swaim says:

    I appreciated these thoughts.
    For the first time sine being back in the states, minus the initial great regression, in the past four weeks we have been experiencing regression in our dear son with autism.  His behavior has greatly gone down hill!  It is hard not to be discouraged.  Then I remember how it happened with my other strong willed children.  There always seemed to be a time of great victory in the area of behavior but then a time of testing per say.  It seemed that the child decided to check once again just who was in control~who is boss here anyway!  My dear son has scores of social stories with pictures reiterating the fact that he is not the boss…he is not the one to make the final decision!  I guess it’s time to get those out again.  And it’s time to pick myself up by the boot straps and face it head on.  I had a hard time finding any material that gave a sufficient solution to behavior problems in children with autism.  Mark and I (while still in Poland) decided to train our son just as we had all the other children~ to keep the same expectations of him as we did the others.  But to say that it’s hard work is an understatement! Talk about stubborness!  I truly was not sure that I would live through it.  But I did.  I’m a better person because of it.  Well, before I write a book here…I’ll close!

  3. Elizabeth G says:

    Thank you so much Susanna! This is so timely and vitally needed here. You have given me a renewed perspective and reminded me of what I hold to be true, but had let slip in times of mere survival.

  4. MommyScott (christina) says:

    I’ve been learning so much from you and it has truly blessed and encouraged me.  Your love for your children is inspiring <3 and Verity is a precious gem!

  5. cinny says:

    I love that first picture with her fingers tightly curled around the basket.  Great post.

  6. Michelle says:

    Thank you so much for sharing your family’s and Verity’s story.  I started reading your blog last week when I was having soooo much trouble feeding my little peanut.  Hailey was born in February.  That is when we found out about her having Down syndrome, a VSD and an  ASD.  We are now awaiting surgery which is scheduled for July 12.  I’ve loved watching how great Verity is doing.  It has given me lots of encouragement as we wait (not so patiently) for Hailey’s heart to be repaired.  We didn’t find out about Hailey having Down syndrome or her heart defect until after she was born.  Needless to say, it was a shock to both of us and took a little time for everything to soak in.  We are so grateful for our little Hailey and feel blessed God chose our family for her.  We are looking forward to having her heart repaired so she can work on getting bigger and tackling the world!  Thank you again!

  7. Susanna says:

    Michelle, it is great to hear from you! Please feel free to email me at susanna@theblessingofverity.com if you want to chat more about the feeding issues. I would love to help you in any way I can!

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