Thursday, March 31, 2011

Do you use twitter? Do you have a heart for Down Syndrome?

Please take a moment to read this blog post:

Life With My Special K's

Then take action!!

Tuesday, March 22, 2011

Great News for The Arc

I had the priviledge of meeting Lauren Potter back in November at The Arc's National Convention.  I even got my photo with her:





Today on The Arc of United States blog, they announced that Lauren has agreed to be our spokesperson for The Arc in May on their upcoming reveal of The Arc FINDS study.  What a cool selection on the part of The Arc for a spokes person.  If you do not know who Lauren Potter is, she is one of the cheerleader stars on the hit tv show GLEE.  She plays such a cute role.  I honestly never watched the show before convention, but now I try to catch it each week.

You can read The Arc's Blog entry>>HERE<<:

Can't wait for May 10th to hear the results of the study.  What an exciting year for The Arc with their new brand look and the growth they are experiencing,  I am so glad to be a small part of this in our little ole neck of the woods :)

Thursday, March 17, 2011

Thankful Thursdays.... Sweetness and a Scary Moment

I am so thankful that God blessed me with all the children he did.  Each one is so very special in their own ways.  Looking at these photos does nothing more than put a big smile on my face.  I love that Camille is the best big sister and loves her twin brothers so very much!!





Today is an especially good day for me to post how thankful I am for my children.  Today Camille was home sick from school. I am thankful that she is feeling better.  I was making her (and the rest of us) some homemade chicken noodle soup for dinner tonight and when I got to the part to put in noodles, I realized I didn't have any noodles.  I gathered Elijah up and we ran into the grocery store for noodles.  I left Tristin in charge for a few minutes while I ran in town, which I do sometimes.. I get a phone call while I'm in the grocery store.. Isaac had made his way up to our neighbors house (Tom's Aunt and Uncle).  When I left for the grocery store, I left the garage door up.  This is something that I sometimes do, but now cannot do anymore...EVER!!!.. The boys are getting good at opening doors,  apparently Isaac opened the door going out into the garage, saw the garage door was up and took off.  THANK GOD, he went up to Aunt Sue's and Uncle JR's.  THANK GOD he did not try to cross the road to goto Grandma and Papa's.  THANK GOD he did not just decide to visit the woods or something.

As soon as Aunt Sue called me to tell me he was up at her house, I called Tristin to go get him and I ran straight to KMart to purchase those child proof door handle hickey ma jiggies.  I think door alarms are in our future too.. This is sooo scary and something that I have been soo nervous about now that they are more mobile and more independent.  Please pray for a safe summer for these boys!!!  I continue to pray for wisdom each day so that I can stay a step ahead of them all the way..

Saturday, March 12, 2011

Very Informative Blog on Inclusion for all my DS Family

Tom and I have decided to hold the boys out another year from kindergarten. Why fix whats not broken is what I think. They are making fantastic progress with what we are doing with them right now and I want to continue on that path another year. Yet the topic of inclusion and transition is always so interesting and important for me to learn about. Not only as a parent of children with special needs, but also as the Executive Director of The Arc of Jefferson County.

It has been my privilege to get to know some wonderful parents online and share our concerns and experiences with on another to help us all grow in confidence, strength, and passion about how we would like our children educated.

This is an amazingly informative post from a fellow mom and I wanted to share it with anyone interested.

Click here to goto Our Perfectly Imperfect Life Blog

Friday, March 11, 2011

Caleb showing off his Your Baby Can Read Skills..... AMAZING!!!!

The other night when both twins decided to nap from 5pm to 11pm and then they were up until 2am I was flipping through the channels trying to stay awake.  I came upon a Your Baby Can Read commercial and thought I would watch it since its been awhile since I've watched one.  I saw something on there that triggered me to try it here at home.  Let me just say, it was jaw dropping amazing and I ran for my video camera.  Both boys are reading almost all of the 164 words that are on the flashcards provided in the Your Baby Can Read kit.  I was lucky enough to have won the starter pack of this program back in December of 2009 and began the program at the end of January beginning of February.  Read about that here.  We have continued working with the boys all year last year.  Then for reasons I'm not going to really go into here our programs changed a little bit at home and we took the focus off continuing their reading.  Back on track this January, due to demands from mommy... and the video on here is what we saw today



Go ahead, stand up and clap.. A standing ovation is totally deserved for this accomplishment.  Now it makes this mama want to push the boys even more.  They love this stuff.  They love being engaged and learning, they are sponges.  Now if we can just get them talking to get that knowledge out... Not disappointed, just discouraged that we have a communication barrier right now.  They are signing things to me consistently the same way day after day and some of the signs I just don't know what they are.  Its now to the point that they know more sign language than I do and I am the one that needs to catch up to them.  I love these little guys!!!  Oh and in case your reading this from a Google search about Your Baby Can Read?  My guys are 5 year old identical twin boys BOTH with PDD Autism, Down Syndrome and also happen to be non-verbal.  Not one spoken word, but sign almost 500 words, can write their name, identify all their shapes, colors, numbers upto 20, all the alphabet letters Big and small... and now they're reading... It really swells my heart with pride of how far they have come.

Wednesday, March 9, 2011

Isaac's Gentle Side.... Caleb's Quiet Side

Caleb and Isaac have had quite a show of emotions these days.  They are figuring out how to be lovey and hug each other and act all gentle like.  Then the next second they are pushing each other down, pulling hair, scratching each others faces, banging their heads and acting mean like.  I do get nervous having them near little babies because I truly don't know how they will act.  Today I had the pleasure of watching my 3 month old niece Abbey.  Isaac seemed very interested in her and the last time she came to the house he was very gentle with her.  Isaac likes to play with a baby doll every once in awhile, so I asked him if he wanted to hold the baby.  He immediately signed "YES" to me.  So I ran and grabbed my camera just in case it turned out good.. and it did :)

Here is the precious cargo that we experimented with.  Isn't she precious??


First we sat them near each other and played... that went well
Then we explained that she is little and he had to be gentle with her so he played with her little fingers.
Then the loving began, he was so kind to her.  It was so beautiful :)

After all of the cuddling from Isaac we called in Caleb.. He was not as excited.  He played with her little fingers and looked  at her a little bit.

Then we asked Caleb to give her a kiss and we got this look....
 and then he ran!!!


It was a nice day to sit and cuddle and get my baby fix for a few hours.  The boys did really well and Abbey put up with her cousins like a champ.  

Wordless Wednesday: Isaac with Tristins Glasses on.... upside down!


Wednesday, March 2, 2011

3-2-11 Spread the Word to End the Word

"Your so Retarded" or  "Oh I'm such a retard"

Have you caught yourself saying the above words before?? I have... before I had my children.  I never really had anyone challenge me on the words.. I never really used them thinking of someone with special needs when I said them.  I just used the word simply because other people did and it got a laugh.

Now that I have children with special needs, yes I said "children with special needs", it really does mean something else to me and it really does hurt when I hear people use is.  To this day I still have family members using this word.  I have asked them to stop and they tell me that they are not using it to offend me or the boys, but... it does.  What does the word mean?

–verb (used with object)
1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
–verb (used without object)
2.to be delayed.
–noun
3a slowing down, diminution, or hindrance, as in a machine.
4.Slang: Disparaging .
a mentally retarded  person.
ba person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.
 
The above words do hurt.  My boys have PDD Autism, my boys have Down Syndrome, my boys are non-verbal, my boys are delayed..
 
BUT my boys ARE NOT STUPID.  My boys are 5, they sign over 400 words, they read over 100 words, they are writing their name, they are spreading their love to anyone and everyone they come in contact with.  They don't care if you are in a wheelchair, if your obese, if you have no money, if own a million dollar mansion.  They know unconditional love, they show unconditional love, they TEACH unconditional love.  That sure does not sound like someone who's stupid to me.  
 
Today take the pledge to not say the "r" word anymore.  If you catch yourself doing it, make a mental note not to do it again.  When I hear my childrens friends say that word the first thing I do is ask them if they know what that word means.  ALL of them have said NO.  When I point to the twins and tell them that they are making fun of those boys they all stand their with their mouths wide open and say they are sorry.  I'm not trying to make them feel bad, I'm trying to teach them... and by doing that I hope to change their language forever.  I can't do this alone, and I hope other parents will step in and ask their children not to use this word.

I DOES HURT!!