21 Things you should know about Down Syndrome
1) They have 3 copies of the 21st chromosome, which is called Trisomy 21, or Down Syndrome (Hence the reason for celebrating World Down SYndrome day on 3/21!)
2) A parent didn’t DO anything to cause their child to have Down Syndrome.
3) People with Down Syndrome like to have FUN as much as the next kid or adult.
4) People with Down Syndrome (just like any other person, who has feelings-which we ALL do) do not appreicate being called “retard”…so spread that awareness around so that someday this word will be considered just as offensive as a racial slur. In fact, the header on our website at present is from the recent campaign of “Spread the Word to End the Word”, and the actors from the show “Glee” did a public service announcement on it.
5) Some actors with Down Syndrome are: Lauren Potter of “Glee” television show, Chris Burke of Life Goes On in the late 80s and early 90s. This show depicted the life of a family with a child with Down Syndrome. Chris Burke is now the Goodwill Ambassador for the National Down Syndrome Society.
6) People with Down Syndrome have more similarities to you than they have differences from you.
7) People with Down Syndrome (even some young preschoolers) can read, write, and carry on conversations very well. Abilities can vary as much within the Down Syndrome population as much as they vary within any given city full of typical people or classroom full of typical children.
8) In the Down Syndrome community, it is considered more appropriate to say “child/person WITH Down Syndrome rather than “the Down’s guy/baby.” Do you only see Down Syndrome when you look at a person, or are you seeing a person first? Please don’t call me “Asthmatic girl”, or “ADD girl!”
9) A Down Syndrome diagnosis is typically given soon after birth. The pediatrician will usually notice features that are consistent with Down Syndrome and will send blood work to determine whether the baby has 3 copies of the 21st chromosome.
10)Some features that pediatricians look for when determining whether a Down Syndrome diagnosis are: a single “palmar” (across the palm of the hand) crease, almond shaped, or upward- slanted eyes, sandal gap between big toe and other toes ,(just a little extra gap that makes wearing sandals less painful, I imagine!) and a larger than usual forehead. In any Syndrome, you don’t have to have all the features to have it. These are some things that you will find in some combination, in a large cross-section of babies with Down Syndrome.
11) While people with Down Syndrome generally do not have high IQs, they can be average or moderate. Part of the stereotype of people with Down Syndrome being dependent and lacking in ability probably has a lot to do with them being institutionalized in the past. Strides have been made to avoid institutionalization, which include daytime rehabilitation clinics for preschoolers (speech, physical and occupational therapies within a preschool setting), vocational training centers for adults, and jobs offered to people with disabilities, including people with Down Syndrome.
12) Children with Down Syndrome have hypotonia, which means low muscle tone. This makes it more challenging for them to do any physical task-they have to put in more work to use their muscles than typical people. Children and adults alike with Down Syndrome often have physical, occupational, and speech therapy for these reasons.
13) Speaking of speech, children with Down Syndrome can understood what is being said very well before they are able to respond. They are considered delayed in speech compared to their typically developing peers. Something that many parents have found helpful is to teach children, starting as young as under one year, American SIgn Language (or ASL.) This helps minimize frustration in knowing what parents are saying and wanting to communicate but not being able to form the words yet. ASL is to be done alongside talking and speech therapy so the child can speak clearly.
14) Don’t be so afraid to offend people with Down Syndrome or their family members that you just don’t get to know them at ALL. More alike than different, remember? So start there…talk about normal everyday things like you would to all people!
15) Special Olympics is not limited to people with Down Syndrome, but it is a great way to get involved in acceptance and celebration of people with Down Syndrome.
16) People with Down Syndrome are now living much longer life spans than in the past 30-40 yrs. The average life span is now growing closer to that of the typical American.
17) Children with Down Syndrome are often born with congenital defects as part of the chromosomal abnormality. For example, my child had an AV Canal Heart Defect..there are several different kinds of heart defects that children with Down Syndrome may have, and most involve having holes in the heart. Some require surgery, and some holes close over time or can be left alone without causing harm. Advances in medicine have played a major role in the life span of people with Down Syndrome.
18) Many children with Down Syndrome are VERY flexible. I remember the genetic doctor telling us that some kids with Down Syndrome will get off the floor in a way that seems more difficult to typical people. Some kids pick things up with their feet, when this would not occur to typical kids normally. I have witnessed this with my own child getting his leg way up to his head and while seeing other kids in pictures sitting in ways that make them look like little acrobats!
19) Kids with Down Syndrome experience a range of emotions, just like anyone. They are happy, but they are not happy ALL the time as is the common misconception. They get mad and cry…and they can get spoiled just like typical kids, so check yourself parents and grandparents! (Myself included, my kid is still not 1 !)
20) Once a child with Down Syndrome has only been out of the womb for a minute, he has survived a Herculean task of survival. First of all, most babies from the very beginning do not survive past those first 12 weeks if they have Trisomy 21. These babies are at the embryonic stage, and most become miscarriages. Second of all, if a mother suspects she has a child with Down Syndrome and opts to have amniocentesis, a procedure to check for disabilities by sampling some amniotic fluid, the mother often chooses (and is often even pushed by doctors, sadly) to abort the baby. So babies with Down Syndrome are strong survivors and deserve some credit!
An organization that supports choosing life for kids with Down Syndrome specifically is ISDC for life http://www.theidsc.org/
21) People with Down Syndrome have a life worth living. The best way to get this point across is to share the fun, inspirational things you have learned about people with Down Syndrome with others around you. If you have a loved one with Down Syndrome, its to show your loved ones’ pictures and let the world know how cute and handsome they are, and how proud you are of them. How much you love them and others do, too. I think too many people get scared to carry a child with Down Syndrome to term because they have believed the lie that the child would be better off not living, the child would be miserable, and the child would be a burden to them.
Let me tell you first of all that, kids are a burden! Bet you weren’t expecting that! ALL kids are! It’s not an easy task to raise children. It can be scary as heck. Don’t forget , though, that some of the most precious things in life come with a lot of sweat and tears, but immeasurably overflowing joy. If you have any questions, today or ever, please ask. 🙂
Written by: Natalie (Ethan’s mommy 🙂 )