Mothering a child with Down syndrome.

October is Down syndrome awareness month and many people do not know what down syndrome is. Or if they know what it is they do not know much more than it is a chromosomal abnormality. I wanted to help spread awareness and reached out to a fellow mom friend by the name of Kimberlee, her son Parker has Down syndrome. She has been so kind to answer some questions to give us all a better insight and help spread awareness.

Q.  What is Down syndrome?

A.  Down syndrome - the most common chromosomal abnormality in humans - is a genetic condition (Trisomy 21) resulting in an extra copy of the 21st chromosome.  As a result, a person with Down syndrome has 47 chromosomes in their cells, instead of the usual 46.

Q.  When did you know Parker had Down syndrome?

A.  Parker was diagnosed with Down syndrome when he was 2 months old.  Down syndrome wasn't even on our radar until a week prior, when his pediatrician mentioned it to us and ordered the karyotype.

Q.  What are some signs of Down syndrome?

A.  Typically, newborns with Down syndrome have differences in their faces, neck, head shape, stature, hands, feet, and muscle tone.  Most newborns don't have all the physical features; but in general, the most common features are low muscle tone, upwardly slanting eyes, small stature, flat nose, and small ears.


Q.  How is Down syndrome diagnosed?

A.  There are several prenatal screening tests to determine whether a woman's baby has an increased chance of being affected by Down syndrome or other disorders.  Maternal blood tests and ultrasound are most commonly used.  Screening tests are NOT in and of themselves 100 percent accurate in detecting the presence of Down syndrome.  However, doctors use those results to recommend additional diagnostic prenatal testing in the form of amniocentesis, and chorionic villi sampling (CVS).  Women are free to decline all testing or to choose to have just one or the other of the screening tests. I, personally, declined all genetic screening/testing.  Parker was diagnosed post-birth by having his blood drawn and sent to the lab where they could evaluate the size, shape, and number of chromosomes in his sample of body cells.

Q.  How did you feel when you got the diagnosis?

A.  When the diagnosis was delivered, I was numb.  It was the week before, when they said we should have the karyotype done, that I felt complete shock.  "My baby?  Down syndrome?  There's no way.  That couldn't happen to him/me/us..."  About 6 weeks after the diagnosis was when everything really started to hit me and I became an emotional roller-coaster: grief, anger, despair, helplessness, guilt, confusion, resentment, shame, depression... Primarily, a terrible fear of the future.  I wondered how, or if, I could cope with this sudden, unexpected, overwhelming change to my life.  It took time for me to process and adjust.  Allowing myself to grieve, learning to not feel personally responsible, being open about it with family and friends, and connecting with other families who have babies/children with Down syndrome was key in my "recovery."  Far from the grief and despair I felt after he was diagnosed, I now feel pride and joy.  I came back to see the precious little baby I originally dreamed of, and Down syndrome took on a different prospective.  He has given me a new challenge in life, and a new set of values as well - love better, fight harder, and appreciate people for all they are.  A different dimension was added, partly frightening and partly sad, but also beautiful.  I wouldn't change him for the world

Q.  What challenges might someone with Down syndrome face while growing up?

A.  Just like with any child who has a typical number of chromosomes, that question is a bit difficult to answer as every child with Down syndrome is different.  Often there is a litany of things that could possibly go wrong; but you never know until your child arrives.  The biggest challenges really do seem to be from misunderstandings, negative attitudes, perceptions, and old stereotypes that are out there.  Sure, there are some medical challenges, but those are much more manageable than the social/stereotype situations are.  We prefer to focus on the likenesses to peers rather than the differences.  We prefer to highlight potential and the fact that we all face difficulties - no matter what our chromosomal arrangement is.

Q.  How do you think raising a child with Down syndrome is different from raising a child without?

A.  Parker is my first and only child for now; so no first-hand experience... yet!  But this is what one of my momma friend's has to say about it: "My husband and I have 6 children between us.  Four of them are adults and the youngest two we had together.  Eliyana is 5 and has Down syndrome.  Our youngest is three.  

In most ways, raising a child with Down syndrome has been no different than raising our other children.  A child with Down syndrome has the same basic needs that a child without Down syndrome has.  All of our children are different in personality, likes, dislikes, and demeanor.  As a parent you adjust and adapt to each child as necessary whether they have special needs or not.  That's just what a parent does.  

When you have a child with special needs, you do have to slow down a little.  Milestones come a little slower.  This can be difficult as a parent, but the beautiful thing is, you actually NOTICE them and CELEBRATE them!  

Eliyana does require extra time and attention due to therapies and some extra medical care.

As a parent I sometimes struggle with balancing my time between all of my children as they all have needs, even our adult children.  I want them all to feel that I care about them and that they are loved.

I truly believe that having Eliyana in our lives has made us all a little better.  A little more patient, a little more kind, a little more loving and a lot more aware of the people around us.  We all know how hard she has to work for things that come easy for most of us.  She is our inspiration!"

Q.  What do you hope for Parker?

A.  Rather than changing him, I hope to help change the world around him, that the world may value him, offer opportunities, expand its definition of beauty and success, and celebrate the many things that make us both alike and different.