31 for 21: How to Explain Down Syndrome to a Child

We were faced with this dilemma when Hailey was born.  How do we explain Down syndrome to a 4 year old and an 8 year old?  Do we explain it to her brothers or do we just let them love her as their sister and never "label" her?  With the boys we decided to let it go...we didn't explain it.  She was just Hailey.  We actually didn't tell them much about Hailey's heart until the very last minute.  Both boys tend to take a lot of stuff to heart and we didn't want them to carry the burden of worrying about Hailey.  The two of us worried enough so we waited until a few weeks before her open heart surgery to explain it all to them.  Down syndrome still didn't enter the conversation until almost September before we headed to a new parent dinner with our Down syndrome association.

A friend recently asked how she explains Down syndrome to her 5 year old if he sees someone and asks about it.  The one thing we have learned with Hailey's NICU stay, open heart surgery and her diagnosis of Down syndrome, you give them as much information as they want at their age.  We started basic and let the boys lead the questions.  Depending on the child, the information you give them might be enough.

We started simple and gave the facts.  We sat them both down and commented that they both were born with blue eyes and have brown hair.  Ian was born left handed and Brayden was born right handed.  In that same regard, Hailey was born with blue eyes and has Down syndrome.  We did tell them that your body is made up of cells that has things called chromosomes.  Every cell has 46 chromosomes except with Hailey hers all have 47 chromosomes.  I think the chromosome part was better understood better by Brayden than Ian.  Hailey has to work a little harder to learn things.  It will take her a little longer to learn to crawl, walk, etc, but she will do all of it in time.  They wanted to know if she was sick and would Ds make her die.  We answered, "No."  As soon as they had their questions answered, they were content with the conversation.

In explaining to your children, why Hailey or another child with Ds does certain things or doesn't do certain things...just be honest.  Give them as much information as they need/want.  Down syndrome will cause them to learn slower and they will need to work harder to accomplish things.  Ask them to be patient with them.  We want children to know that she has the same feelings that other children have.  She will have similar interests as other children...soccer, swimming, playing with friends, etc.  Depending on the child they encounter, you might have to explain...orthotics (to help with walking), sign language, wheel chair, etc.  It takes them longer to learn how to walk, talk, run, etc.  Depending on the age, you could tell about cells and chromosomes and the extra chromosome.

Today, I decided to ask the boys what do they say if someone asks about their sister...why she doesn't walk or talk?  Ian's response was "she has Down syndrome."  I asked him what that meant and he replied, "It takes her a little longer to learn things, but that is why she goes to therapy and exercises, but she can still play with us."  To my 5 year old, that is all he needs at the moment.  Actually Brayden's response was similar.  He said, "She has Down syndrome and it makes it harder for her to learn to do stuff that is easy for most of us.  Everyone learns differently, but she's still just a kid."

So, give simple facts and let them take the lead.

One day, I will be able to take a picture of this little stinker without her saying "cheese" and squishing her entire face!