31 for 21: People First Language

Using "People First Language": People with DS should always be referred to as people first. Instead of “a DS child,” it should be “a child with Down syndrome.” Also please avoid calling them a “Down’s child”. Would you ever say "that cancer lady"? Probably not. My twins are little boys first, the DS is a small part of them. They are little boys who happen to have Down Syndrome.  

This is a biggie to me and for many other mom's I know.  Its also something I truly never thought about until I had my boys.  I generally don't correct people when they say it, but in honor of National Down Syndrome Awareness month I thought I would type it up for people to consider.   My family and I don't even see the Down Syndrome every day, we see happy little mischievous almost five year old boys who are amazing us everyday at what they do and how much it takes for them to get there, yet never complaining only trying extra hard to please us.  They deserve to be looked at as "little boys".

31 for 21: Super Crazy Saturday

Everyday is a busy day as a mom to five children.  There is ALWAYS something going on.  Today I woke up at 7am, grabbed me a cup of joe and headed off to the kids bathroom to tear down some wallpaper.  I got it in my mind about three weeks ago that I wanted to remodel their bathroom.  We have been in this house for five years now and I've wanted to do this since day one.

So here goes nothing.  I'm doing the project pretty much solo, except for replacing the vanity light which I hope my husband will help with.  So I'm nervous yet excited all at the same time.  I am hoping to get it done in a weeks time.  Here is the wallpaper I have stared at and hated for a long time...

30 years is long enough to have strawberries in the bathroom here at the house...  I'll post the new look when its done.  The twins are very interested in what's going on. I closed the door and would NOT allow them to see my tearing down wallpaper.  I thought that perhaps they might get some hairbrained idea to tear down wallpaper if they saw me doing it :)

My Down Syndrome Tip for today:
Transition is a word that I never thought I would think about so much before having my boys.  We transition from early childhood programs to preschool, then we transition from preschool to school aged, we transition from summer programs to school programs, then later in life we will transition from school aged to adult life..  WOW~ thats alot of very complicated and thought provoking transitioning.  I'm just so glad to have support from friends who have already been there and done that. 

So today, a new transition for us here at the Hanzely Household right now is a NEW UPDATED Looking BATHROOM :)

31 for 21 : 2010 NDSS TIme Square Video

I am totally cheating today for the 31 for 21 blog.  As I was looking around online today I came across this video on the NDSS website.  Each year New York Time Square puts on a video of beautiful faces to spread awareness in the month of October.  I've been saying this for the past four years now, but next year I'm going to have to submit a photo of the boys for this...  Can anyone tell me how??

CLICK HERE: Totally worth a few minutes of your time to see all these beautiful faces

31 for 21.. My children with Down Syndrome

For Down Syndrome Awareness Month I find it appropriate to share encouraging quotes I have come across over the past 5 years.  This is one of my favorite and one that is so true.

I thought I would have to teach my child about the world, but instead I have to teach the world about my child~~ Unknown

If you are not a parent of a child with special needs you may read it and think eh, yea I can see that.  But when your living it, when you have to explain your childs actions almost daily for people to understand what they are doing, it becomes a mission.  I don't mind a bit explaining things to people, I almost wish more people would ask more questions.

Here are a few that come to mind:

Did I know before they were born they would have Down Syndrome?  No I did not know.  They were 9 weeks premature, I found out when Caleb was about 10 days old and I found out about a week after that about Isaac having Down Syndrome as well.  Isaac was so tiny, 2lbs 10oz, that they did not want to do a blood draw right away if they could avoid it.

Isaac mad at Caleb so he hits his head

Caleb unsure of his surroundings so he hits his head

Why do they hit their head so much?  I have answered this so many times that I truly think this takes the most popular question asked of my guys.  They both hit their head with a closed fist, thumb side right above the ear.  I can tell you I am not totally 100% sure of exactly why they do this, but from my research and speaking to professionals, I believe it is due to their Sensory Integration Dysfunction.  They are seeking input in their head and they hit themselves to provide that input.  They do this at any given time.  When they are frustrated it happens much, much more.  They also literally run at full speed sometimes and slam their head into walls and doors.  This is generally done when they are mad about not getting something that they want.  I try to have a sense of humor about it.  Since they sign to communicate, when people ask my why they do that, I say they are signing that your funny looking and scaring them... LOL  I've gotten a few laughs out of that.

Why are they always humming?  This to is a sensory issue I believe.  Its an auditory stim.  They like to hear themselves so they hum.   What is a stim? This is taken from Wikapedia:  Stimming is a jargon term for a stereotypy, a repetitive body movement that self-stimulates one or more senses in a regulated manner. It is one of the symptoms listed for autism, although it is observed in about 10 percent of non-autistic young children. Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, and repeating rote phrases. 

There are many more, but these are the ones that come off the top of my head. So go ahead.. Do you have any questions?? I will gladly answer them if they are appropriate.

31 for 21 ~ The Joys of Double Trouble

Raising identical twin boys both with PDD Autism and Down Syndrome can be a little exhausting sometimes.  Today was one of them.  They are little tornadoes at my house.  I no sooner get one room cleaned up after them and they have destroyed two more.  Today was by far the worst poop experience I've ever dealt with.. I'll spare you any details, but know that it easily took me almost an hour to clean up while they were soaking in the tub.  I took a 9 minute phone call, dealing with their medical insurance and came in to find them both laughing and having a good time covered in poop!!!

I couldn't and WOULDN'T take photos of todays experience.  But I was going through some photos and thought I might share another rather recent experience with you.

After I took the photos and everything was cleaned up and over, I looked back and read the shirts they had on and found if very appropriate to read CAUTION in big letters....LOL

Gotta Love Them!!!!

31 for 21: Rainbow Eyes

The one thing that I have to admit I've totally grown to love are the beautiful almond shaped eyes people with Down Syndrome tend to have.  When the boys were born that was the feature that caught the peditrician and nurses attention that my boys may have Down Syndrome.  I could not see it.  I remember looking at them and looking at them, over and over again, and finally telling the nurse that I just couldn't see it.  She said something that I will never forget.  She said "Honey, your looking at them through a mothers eyes, and they are perfect to you in every way."  AMEN!  Now looking back on photos I can see it.  I think that it may have been God's plan for me to not see them any different while we were getting to know each other.  Now I find it to be one of their most attractive features.

CALEB:

By boys are identical.  But I can tell them apart by their eyes.  I love love love Isaacs eyes and I call them "Rainbow Eyes".  They just make me smile like I do when I see a beautiful rainbow outside after a warm afternoon shower.

ISAAC:

31 for 21: Never say "Your Sorry!"

My Down Syndrome Awareness tip for today: When someone you know finds out their baby has Down Syndrome. PLEASE do NOT say your sorry. Say Congratulations and share in their moment. If they are sad, encourage them. If they are numb, comfort them. Offer to support them and help them with whatever they need. No need to feel sorry, they may not know it yet, but they just delivered a major BLESSING from God!!!

Caleb and Isaac  (about 6 months old)