10 Things to Say and Not to Say to Someone Who Has Recently Had a Baby With Down Syndrome

So, a little while ago I ran across another blogger who wrote two different posts about what to and what not to say to someone who has recently had a child with Down Syndrome.  I decided not to look at her two lists and compile my own and see how they compare.  I actually have been thinking about this for quite some time.  I thought a lot about things that were said to me.  Some things bothered me then, which if said now, would not.  I actually couldn't think of 10 things for either category.  I came up with 9 things for what not to say and 6 things for what to say.  They are in no particular order. 

Things NOT TO SAY when a baby is born with Down Syndrome

1 - I'm so sorry.

• Don't ever say any comments that are mournful or pitying in manner.  There is a new baby to celebrate!

2 - You can't even tell.

• Yes you can.  It's in fact the only thing the new parent can see for several days.  Even if you are having a hard time seeing the physical characteristic's of Down Syndrome, keep it to yourself.

3 - Will you have more children?

• They just had a baby for goodness sakes!  This isn't a prison sentence.  Believe it or not, we continue to live normal lives too.

4 - I heard some kids with DS can even read...

• Yeah.  Someone actually said this to me.  Seriously.  It was meant to be encouraging but the point of this bullet is to remind you to think about what you are about to say.  Comments like this are just going to remind new parents that their sweet, new little baby is different and there will be many challenges ahead.  Let them enjoy these moments with their newborn, not their newborn labeled with Down Syndrome.

5 - I don't know how you do it?

• At that point, neither do we.  It can be an overwhelming thought that early on.

6 - When will your child be able to _______ ? (walk, crawl, talk, etc.)

• This is actually a question, that depending on my mood, still annoys me.  No baby, with Down Syndrome or not, comes with a manual telling parents when they will hit certain milestones.  Yes, babies with DS take a little longer to learn how to do certain things.  New parents, especially, aren't going to be familiar with the DS growth and developmental charts.  If you are that interested in knowing the answer, look it up online yourself.  As the child gets older and a parent is asked this question, it can actually be very hurtful - unintentionally of coarse.  For example, the child has been working for 6 months with a physical therapist on walking.  There has been virtually no progress and very little strides in the right direction.  The parent is feeling discouraged, helpless and, well, quite frankly, sad.  Then, you come along, and ask the question, "When will Johnny be able to walk?"  It can be very hard to choke back emotion at those times.

7 - Are they high functioning?

• This is something no one can know for many years.  There are also so many opportunities for children with DS to get great therapy, that the possibilities are endless.

8 - It could be worse.

• At that moment, NO it couldn't.  This news has just crushed these parents.  Even if the family knew before the birth, it's now very real.  Don't trivialize their emotions.  You DO NOT know what they are going through...and if you do, you would never say that.

9 - Don't have high expectations.

• Yes, another thing that was said to me...by a NICU nurse.  I'm not sure what she was hoping to sooth by using this comment but whatever it was, it didn't work.  I remember thinking, at the very moment she said it, "If I don't have high expectations for him, then who will?"  Again, this goes back to think about what you are about to say and how will an emotional/hormonal new mother take it.  You can't take it back once it's been said.

Just a side note in this category.  After I had Raymond, I was bombarded with flowers. Almost as if someone had died.  I don't remember getting any flowers after I had Isabella (our first) and my mother-in-law sent me a basket of flower's with a big lily in the center after Lily was born (our third).  The basket of flowers with the lily seemed so appropriate.  While receiving arrangement after arrangement of flowers in the days following Raymond's birth, I remember thinking all these people were so sad for us and felt such pity.  I guess what I'm getting at is a simple gesture can even be misinterpreted.  I'm sure some people were sad for us but then other's were just trying to help us celebrate the birth of our son.  My suggestions would be, instead of flowers, send a fruit basket, cookie basket or a basket with some type of goodies for mommy and daddy in it.  Send something for the baby or a gift card.  Flowers can be interpreted as mournful, and that's exactly how I interpreted 99% of the flowers I received.  (Truly, I got a lot of flowers!) 

Things TO SAY when a baby is born with Down Syndrome

1 - Congratulations (what a blessing)

• There is a sweet new baby to love!

2 - He/She looks like you

• I think a lot of parents are worried that their child with DS will not look like them.  This isn't true, even though there are some typical shared characteristics of people with DS.

3 - Can I bring you anything

• Something you should ask any new parent.

4 - Can I hold the baby

• Many new parents are worried that people won't except their new addition.  This small request can mean a lot!

5 - Offer to bring dinner

• Remember that parents are often very overwhelmed after having a new baby - especially when they've been thrown something they don't expect like a DS diagnosis.  One less thing to worry about is exactly what they need.

6 - Offer to watch any other children

• There are often extra doctor visits after a child is born with special needs.  Not having to take along other children allows parents to focus on what doctors and other medical professionals are trying to tell/teach them.  Even just watching the other children for a few hours in the afternoon can help a parent get their thoughts together.  It can take awhile for parents to adjust to this new diagnosis.



A lot of the things on these lists, in my opinion, can be applied to children with other disabilities as well.  I truly hope this helps someone who is reading.  Whether they use it for themselves or pass it onto someone who they think might benefit from the information.

 

Until Next Time!

Lots of Love,

Robert Saylor's Death Ruled A Homicide

Robert Saylor's Death Ruled A Homicide: Man With Down Syndrome Died In Police Custody

By Simon McCormack

Courtesy of The Huffington Post

The death of a man with Down syndrome who was reportedly killed after lying face-down in police custody has been ruled a homicide.
WJLA reports that Robert Saylor, 26, of New Market, Md., was asphyxiated on Jan. 12, according to a medical examiner's ruling late last week.

A "law enforcement source familiar with the case" told the station that Saylor "went into distress when he was put face down on the ground."
Police were reportedly called to a Frederick movie theater by employees who couldn't get Saylor to leave. He had come to the theater with a health aide, paid admission for "Zero Dark Thirty," but allegedly remained after it was over.
Dr. George Kirkham, a criminologist and former law enforcement officer, told the Frederick News Post that Saylor's death may have been caused by positional asphyxia.
From the Post:

Positional asphyxia is typically the result of an intense struggle and often involves a person who is handcuffed and lying on their stomach after the struggle. Kirkham said people often panic and can't catch their breath. People with larger stomachs are particularly vulnerable, he said, because their bellies will push into their sternums, making breathing even more difficult.

Frederick County Sheriff's Office spokesperson Jennifer Bailey said the case is still under investigation and that the three officers involved in Saylor's death -- Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris -- "continue to work their normal assignments," according to the Post.
Frederick County State's Attorney Charlie Smith said his office is reviewing the incident and has not decided whether to bring charges.
WJLA previously spoke with Saylor's mom after the incident.
"He just loved unconditionally everybody," Patti Saylor said. "He has never had anyone put their hands on him in his life. He would not have been doing anything threatening to anybody."
Police officers nationwide often lack appropriate training for dealing with suspects who have special needs, according to a study by Crisis Intervention Team International.
Other research by disability advocacy groups has found that "law enforcement officers often receive little or no training in the area of intellectual and developmental disabilities and have difficulty recognizing a person who has this disability."

Terrible.  An absolute tragedy for his family.

Until Next Time.

Lots of Love,



The Bathroom Door

 

You can't fully appreciate this unless you have children.

 

Until Next Time!

Lots of Love,

Weekly Therapy Update

Lily's Therapy Update for the Week

"Progress since last session - Including Parent Report:

- Lily tried the bubbles from last week.  She used the blower toys until they were destroyed.

Outcome(s)/Goal(s) from IFSP/IEP to be addressed:

- #1. Lily will increase her language to express her wants/needs especially at mealtime.

Daily Routines Used:

• Play with toys
• Book Activities
• Songs and Rhymes

Strategies Used

• Offer Choices
• Turn Taking
• Model or Demonstrate for Child
• Encourage Child to Imitate

What we did today to address outcome:

- We reviewed Lily's progress for her quarterly review with Julie (service coordinator) and Erica.  Lily has met her outcome and we discussed new one to improve clarity of Lily's spontaneous speech.

- We used music, books, and rhymes and Lily's toys to model phrases and encourage.

Plans for next session:

• Me turn 
• Kaufman 
• Phrases during play
• Success with song tapes

Suggestions for families to do within their activities/routines:

- Continue with blowing activities - new straw, horn, bubbles and vowel for lip protrusion and tape with player.

Progress information to be collected between sessions:

- Phrases Lily speaks that family understands."

-Ellen, Speech Therapy

01/31/2013

 

 Raymond's Therapy Update for the Week

"We have been working on:

Receptive Language

• N/A today

Expressive Language

 

- Raymond was very expressive today (words and sign use).  He continues to make choices well by pointing to objects. 

Using Functional Language

 

- Raymond used signs and some words in response to questions today.

Articulation

 

- We worked on answering yes/no questions.  Raymond used head shakes in imitation of "no."  He consistently used "open" (o-o) and said "go back" spontaneously today.  Raymond made a request for pat-a-cake by verbalizing (attempt) and gesturing.

Voice/Establish Fluency

• N/A today

Other

• N/A today

We worked on these during:

• 1:1 (Home)

Comments:

- When asking a yes/no question formulate it to elicit a "no" response from Raymond.  Instead of "Are you all done with the book?" ask "Do you want book?""

Allison, Speech Therapy
02/21/2013

 

In school, Isabella and her class have been learning about American Symbols.  The American Flag, Statue of Liberty, Liberty Bell, etc..  She has seemed to really enjoy learning about these things.  She told Chris and I she wants to go see the Liberty Bell since it is in Philadelphia.  All the kids in her class made American Symbol books to take home.  On the front was a section for them to draw any of the symbols they wanted.

 

This is Isabella's... 

 

 

So, I recognized the Statue of Liberty and the American Flag.  I had to ask her about the other two pictures.  She told me the heart was a symbol for a hospital (The Red Cross maybe?).  She continued to tell me that Mrs. Hodnik told the class that one of the reasons they should be thankful to live in the United States of America is because we have such good hospitals.  So she decided to draw a picture of Raymond when he was a baby, in the hospital, hooked up to all of the machines, with a nurse taking care of him.

She is my sweet, sensitive girl!

 

Until Next Time!

Lots of Love,

 



The Love Chromosome



To learn more about Julie and The Love Chromosome, click HERE!

Until Next Time!

Lots of Love,



My Brother Used to Have DS

My Brother Used to Have Down Syndrome  

 

By: Eva Glettner
Courtesy of The Huffington Post

 

I can't tell you how happy it makes me to read that Kara Marcum is going to be homecoming queen at Bolivar Central High School. This speaks volumes for the entire school. I am personally invested in this story. My brother, who is almost 30, has Down Syndrome. But before you start feeling bad for him, there are a few things that you should know. Jacob is THE MAN. Seriously. With his Ray Bans, Penguin shirts and New Balance sneaks, Jacob is cool to the max. He works out at the local gym and has the guns to prove it. Everyone is smitten by his infectious attitude. Jacob is always smiling and just grateful to welcome each day as it comes. His stint at a local coffee shop translated into almost immediately higher sales.

 

I'm not going to lie. When I was little, I remember thinking "I wish I didn't have to bring Jacob along" to movies, the park, anywhere. But that thought was fleeting because my friends were so welcoming and loving. They would ask "are you bringing Jacob?" They looked past his speech impediment and his somewhat awkward gait and just saw him for what he is: absolute goodness. If anyone in public ever made Jacob feel uncomfortable, my friends and his friends were the first to step up. As my parents carted him to various therapies and doctors appointments, Jacob continued to get more and more awesome. His favorite movie growing up was "Muppets Take Manhattan" and we both learned the dialogue by heart after one-too-many viewings. "You hear that New York, the frog is staying!" was a quote that, to this day, is still stuck in my head.

 

Jacob really is taking the world by storm as we all knew that he would. He's a big social media guy and let it be known that he invited me to join his Google Plus circle before I even set up an account. He has over 1,000 Facebook friends and that number grows by the minute. When one of my blogs was entered into a contest, he rallied up enough votes for me to win the thing. Jacob is a powerhouse.

He is so great with his niece and nephews. The greatest thing about children is that they see him for who he is (as my dear childhood friends taught me many moons ago). They welcome him, they smile with him and they laugh. Oh, what a laugh. When Jacob smiles, it is more of a guffaw. My children have asked me why "Uncle Jakie" as he is affectionately called, "speaks different." I remind them that we all have different struggles and needs and that's what makes us special. I like the term "special needs" so much more than "disabled." Jacob isn't "dis" anything.

 

Jacob has taken his driver's written permit test thirteen times. But he does not give up. He studies the practice tests daily. It is his hope to one day drive a car, even though I have told him countless times that there is nothing worse than driving in LA. He's also stubborn. He will only go to special needs events if he is the counselor. You see, according to Jacob, he "used to have Down Syndrome when he was little." He's outgrown it and I love him for that. He works at a local private school, and he lists his job title as "Assistant Director" on his Facebook page. And you and I know that he is such a valued asset to the team, next year he might be promoted to Director.

 

I don't tell him enough how truly cool he is. Jacob, you are most certainly the man. I have four brothers and we all agree that Jacob is the most responsible and organized sibling of the bunch. No doubt about it. Thanks for continually reminding us what's important in life. Keep laughing, bro.

 

I thought this was a nice article.

Until Next Time!

Lots of Love,

Strong

With Raymond's birthday yesterday, this seems appropriate.

To this day, people always say, "I don't know how you do it."

This is a good explanation...

 

 

 Until Next Time!

Lots of Love,