Lauren is Nine.

Inspired By Down Syndrome

Lauren has come such a long way since December 8, 2007. She was labeled a retard in the hospital, at only a few hours old. I will never forget hearing that from the nurses. I spent 4 hours in recovery. I didn’t know if she was a boy or a girl. I didn’t know if she was ok or where my husband was.

I remember looking at her while I was changing her into preemie Christmas pajamas, and seeing Down syndrome on her face. I knew, even though her doctor was ‘99% positive the tests would be negative’.

On December 14, 2007 we found out that she really did have Down syndrome. And even though I knew it all along, it still killed me. We weren’t told anything – we didn’t even know if she would live. We were just told to take her home. No further appointments were made. It was almost like the dr wasn’t expecting her to survive. The only thing wrong with her at birth (that we knew of) was severe jaundice.

We found out later (after she was 6mos old, when we moved to Minnesota) that she had two heart defects, which were closed successfully with a cath procedure (not Open-Heart surgery) in June 2009.

We had been married only a few months. We were brand new parents. And then Down syndrome. We had no idea how to care for a baby, let alone one with special needs. And since we didn’t have any help (Early Intervention, doctors, etc) we just did the best we could. We took care of her immediate needs and played with her, read to her.

When we moved to Minnesota (and got internet) I found out so much about Down syndrome and Lauren started receiving Early Intervention at 6mos old.

Now, Lauren is in third grade, loves Elena of Avalor, chocolate cake and ice cream, spaghetti and playing her iPad. She loves summertime, when she can get outside and play at the park, especially on the monkey bars.

HAPPY BIRTHDAY LAUREN!

Inspired By Down Syndrome

 

31 For 21: Acronyms

Inspired By Down Syndrome

Lots and lots of big words come with a diagnosis, whether it’s Down syndrome, autism, cancer or anything in between.

Here are some that we use:

Ds: Down syndrome

IEP: Individualized Education Program/Plan

OT: Occupational therapist, works with fine motor skills like writing

PT: Physical therapist, works with gross motor skills like walking, jumping

ST/SLP: Speech Therapist/Speech-Language Pathologist, works with talking, feeding

IFSP: Individualized Family Service Plan, the plan before the IEP (this is for birth-3yrs)

T21: Trisomy 21, the medical term for Down syndrome

ASL: American Sign Language (we used Signing Time for many years – I highly recommend this even for children who can speak – I used this to teach both of my ‘typical’ children how to sign)

NDSS: National Down Syndrome Society (where I get most of my info about Down syndrome)

NDSC: National Down Syndrome Congress

31 For 21: It’s not Down’s Syndrome

Inspired By Down Syndrome

Lauren is almost 9 and I still get the same comments that I got when she was born.

“Oh, she just has a little Downs, you can hardly tell!”

“These Downs kids are angels from God!”

“Downs people are never sad! They are always so happy and positive!”

Since we don’t live in the UK, the proper way to address ‘Downs’ is Down syndrome. Big D, no s or apostrophe s, small s in syndrome.

A little history lesson: John Langdon Down published an accurate description of a person with Down syndrome. Not the genes, just the physical features. He was recognized as the father of Down syndrome in 1866. His son, Reginald, had a son who was born with Down syndrome. His son lived to be 65 (born in 1905 – that is an amazing life span!)

Please – I urge you to read John Langdon Down’s history! Fun fact: he also discovered the features that would become Prader-Willi syndrome, cerebral palsy, muscular dystrophy, microcephaly and plagiocephaly. He really did a lot for the Down syndrome community, before it was a Down syndrome community!

Here’s another much shorter history that mentions his grandson with Down syndrome.

And another one, but this one isn’t all about John Langdon Down.

(From NDSS)

LANGUAGE WHEN REFERRING TO DOWN SYNDROME AND PEOPLE WHO HAVE DOWN SYNDROME:

  • People with Down syndrome should always be referred to as people first.
  • Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
  • Down syndrome is a condition or a syndrome, not a disease.
  • People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
  • “Typically developing” or “typical” is preferred over “normal.”
  • “Intellectual disability” or “cognitive disability” has replaced “mental retardation” as the appropriate term.
  • NDSS strongly condemns the use of the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

Down vs. Down’s

  • NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome.
  • Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. An “apostrophe s” connotes ownership or possession.
  • While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. The AP Stylebook recommends using “Down syndrome,” as well.

 

31 For 21: What Is Down Syndrome?


What Is Down Syndrome?

Down syndrome (or Trisomy 21) means that there is an extra copy of of the 21st chromosome. Trisomy means ‘three’. Down syndrome has its own set of characteristics that individuals may (or may not have) such as low muscle tone, a single line across the palm, Brushfield spots (which are white spots in the iris) and a crooked pinky.

Lauren has low muscle tone and crooked pinkies. She also has an enlarged tongue, a space between her first two toes on each foot (her ‘monkey’ feet) and she is cognitively delayed.

How common is down syndrome?

It’s estimated that in the US, 1 in 700 babies are born with Down syndrome. It’s the most common genetic condition (no, it’s not a disease. And you can’t catch it by being around someone who has Down syndrome.) Nearly 500,000 people in the US right now have Down syndrome.

What causes Down syndrome?

Honestly, no one really knows. Something happens at conception and Down syndrome occurs. It’s nothing the parents did. When we found out Lauren had Down syndrome, we were blamed for living in a house with mold, I was yelled at for drinking a little Mountain Dew during pregnancy and several other things. But I know now it wasn’t something I did or didn’t do.

how likely is down syndrome?

I was 20 when I go pregnant with Lauren. I didn’t have any testing with Lauren, not even an amnio, because my doctor said I was too young to have something wrong with my baby. I went with it, because I was terrified of that huge needle, and he mentioned that there was a risk of miscarriage. According to statistics, I had a 1 in 2,000 chance of having a baby with Down syndrome.

Now that I’m 30, my chances are 1 in 900. By the time I’m 40, it’s about 1 in 100. Down syndrome occurs in all races and economic levels.

Sometimes Down syndrome is genetic, but that’s usually only one type of Down syndrome: translocation.

How long with people with down syndrome live?

As of today, as long as they want! Back in 1910, it was about 9 years old. I found a study from 1986 (the year I was born) that said “The life expectancy for Down’s syndrome victims is 50 years.” I cringed when I read that.

If you look up “oldest living person with Down syndrome” you will see articles about individuals into their 80s. That’s amazing! A few of them have even made it into the Guinness Book of World Records.

That’s a lot of info! Come back tomorrow to learn why it’s Down syndrome, not Down’s syndrome.

Down Syndrome and Hearing Tests

Inspired By Down Syndrome

Part of having Down syndrome means tests. Sometimes lots and lots of tests. Today, Lauren will go in for hearing test – kids with Down syndrome can have hearing loss. The severity varies from child to child, and in Lauren’s case, her hearing loss has always been mild. We find out later today if her hearing has changed since the last time she had the test done. #inspiredbyDownsyndrome

Update: Lauren still has mild hearing loss. We did this as a baseline since she will be having ear surgery in June. They will test again a few months after her surgery, to see if what they did made a change.