Thursday, December 23, 2010

"Himself"....Dressing Himself

Reid has had all sorts of developmental growths of late...his speech is totally blossoming, he counts to 3 without going 1, 2, 5, 2, 1, he spots every stop sign known to man kind and signs it with his little hands (quite aggressively, it's rather funny) and then proudly shouts out "stop" for all to hear, he can kind of say Merry Christmas ..."May Mismas" is close enough in my book...although sometimes I think it gets him a little tongue tied and the other day he decided to say "Happy Birthday" instead as he swung open our front door to come inside....again, close enough in my book. ;) I highlight a different sort of developmental growth... the terrible 2 or 3 thingy where they want to dress themselves without help. I am not complaining mind you...I like that Reid wants to do things by himself, and I like that he has his own opinions about what he wants to wear.... I only wish his pick had not been last year's Christmas sweater that never made it to the attic that is a bit too snug, too small, and too short.... the jeans I am a-okay with but we need to work on which way they need to go on his little body, however this particular day was a very stubborn day and no sort of assistance from mom was to be had, none...period. He then thought a summer hat which you can find in his hand would accent the ensemble just right.

Again....even all of this is okay by me, my little boy is growing up.... Yay, for you Reid Maddux!


Monday, December 20, 2010

Our Garland Halo Wearing...Angel

Today has been rainy, actually the whole weekend has been and by California standards that means "Storm Watch" are the big words on the news around here ;). I love the rain, it's dramatic and soothing and slows everything down and forces you to be indoors and settle your horses down for awhile. I like slowing down and I often need to be forced to do thank you rain for pitter pattering all day on my roof and windows and helping me to take a deep breath.

However, those soothing, calming deep breaths keep getting interrupted by my Luke who very innocently keeps announcing how many days left we have before Christmas and then the pant and sputter and hyperventilating breathing begins again...
sigh, Christmas can be stressful for a parent! ;) I just bought two last minute gifts for Luke, an MIT t-shirt and a penguin Pillow Pet. A true dichotomy of sorts but both totally fit his personality.

Last night Reid met Santa for the first time. We have friends who host an annual Christmas party (same friends who hosted
The Reece's Rainbow Benefit party that post can be found here) and Santa comes to visit with a list of the children's names and a wrapped gift for each one. Reid's eyes grew HUGE when Santa arrived. We saw him then break into some of his gestures from a Santa Christmas song he sang at his preschool program...side note: that was a seriously big cognitive connection, yay for Reid! There was another little girl there Reid's age who sat her little self right next to Reid and then proceeded to stare him down... like seriously staring at him and now it makes me giggle because I think she was just trying to look through his glasses which are pretty darn thick to spy his eyeballs. At any rate next thing I knew she slipped her little hand into Reid's and the two of them sat there watching Santa together....two strangers, yet by "preschooler standards" pals none-the less! on to what this blog title suggests...

With Christmastime comes school performances. Reid got to wear a little garland angel halo in his Christmas performance at preschool Friday. He walked onto stage with it and kept wiggling his little head so the stars on it would move about... he cracks me up. Reid was the assertive clapper in the bunch...he might not have known all the words in each song but after each one he took his clapping very seriously...if you watch the video he was the last one to finish clapping...that's how he was with each and every song :)

*Turn my music off at bottom of blog before watching.


Thursday, November 4, 2010

A Day with Blogging Friends... Ella and Deedah's Dad

So today was fun! We got to visit a bit with one of our blogging friends Denise and her sweet daughter Ella over at CHOC. Ella has been battling Leukemia and is in her 5th round of more and she gets to go home, for good....what a fabulous day that will be!! All the way there Reid chirped Ella's name and he held firmly onto a little turkey art project he made for her...but when it came time to give it to her, well he kind of became an indian giver. (ooh, that felt kind of weird writing that...yikes I don't think that was politically correct...but let's just say he was none too happy seeing her walk down the hall with it). Pictures below of the art hand off... or should I say stand off! ;)

Denise...Ella is just so sweet and just so precious, we enjoyed our time with you!

"Hey...that's my tuuuurkey!"

But then...the fun continued. When I got back, sitting in my inbox was an email from Phil, "Deedah's" dad from the documentary I wrote about here stating that he was in town and would love to give the boys their own copy of Deedah... well, absolutely we were going to make that happen. A hop and a skip and a few left turns and we were there to meet another blogging friend. I love it...I love life's little surprises. So, this evening our own copy of Deedah was playing in the DVD player, what an absolute treat! I am placing the trailer in this post again in case you did not see it before. This is such a great tool to open the discussion with elementary school children about bullying... and these two siblings being the catalyst for that discussion is a perfect match. They are both adorable and articulate in their own rights! I could tell my Luke really enjoyed it as well...he and Charlotte who is nicknamed Deedah are the same age and are both the older siblings of brothers with Down syndrome and share many of the same concerns. Although Charlotte was very sweet in the way she discussed her concerns where as Luke got up off the couch and demonstrated how he would ...quote..."bash their heads in if anyone bullied Reid" perhaps they are similar in "many ways" but not all ...oooh boys! ;) I think another reason Luke really enjoyed watching was that Charlotte was asked if she liked her nickname Deedah and she broke into a sweet smile and affirmed that she did because her brother gave it to her when he first attempted to say "sister".... Luke has the nickname Dah which was given to him from Reid when he first attempted to say "brother". So, I think it was very fun for Luke to hear there is a "girl version" of his nickname.

Okay...I just thought of one other thing and then I am hitting the hay because it is way past my bedtime. My last thought is this.... if this is used as a tool in schools to open the discussion of bullying which in big part is its purpose ....I just had visions of lots of brothers and sisters sitting at their desks as this documentary is being shown who have brothers or sisters that others might see as "different" in some way and I vision these young people almost sighing a sigh of relief that the elephant in the room has an opportunity to be talked about... that they can then share how much they care about their family member and share their experience and help them to have a voice where as they might not feel they can out on the playground. Hopefully the discussion will lend itself for change out on the playground for those children's siblings as well.... I have a huge hunch it will.

***turn off my music at the bottom of the blog before watching the trailer...

Deedah Trailer from Philip May on Vimeo.


Saturday, October 30, 2010

31 for T21: A Down Syndrome Family Photo...and Elvis is in the HOUSE!

The 30th day of October is quickly coming to a close, in fact if I don't type my little heart out it will soon be midnight...leaving one day left for blogging for Down syndrome Awareness. My attempt at 31 posts over the course of the month came very short this time around but I attempted...and I had fun reading everyone's posts and meeting new friends along the way!

....In fact, "meeting friends along the way" is what I want to end my 31 for T21 attempt with. In the last 3 1/2 years I have met some really truly amazing families....families I would have never have met had Reid not shown me. Families near and far.... down the street, the next county over, across the US, and internationally. I love knowing these families, I love seeing their little almond eye shaped beauties and knowing immediately that we share an unspoken bond that comes from a very deep emotional place within us because of our children who share that extra chromosome. It is extremely encouraging to me.

However, as I am walking deeper into this journey I am realizing that it is not just encouraging to have each other to go to and to glean from but it is vital. Without going into detail in this post we had an issue arise a week ago where a parent had/has concerns about Reid being in the "typical" preschool class with her daughter. As we have been sorting through this big ugly bump I was able to call upon so many of those "friends I've met along the way" for support, advice, and resources. It was vital...especially those first few days where this became a very emotional issue for me. Those friends helped equip me with resources, and tools, and special needs laws to help me navigate this appropriately.

I call that friendship...but my friend Kele calls that family. She wrote about that here. She even went on to create a "Down syndrome family photo" shown below. Can you see little Reid in there? ...he is next to one of his best gal pals! I love that as I scan her picture I can name so many of these kiddos...had you told me that I 'd be able to do that on the day he was born I'd have told you you were bonkers.

Your family photo might look a little bit different, maybe you've connected and clicked with different people...or maybe you haven't connected yet with others...and if that is the case I would really encourage you to reach out and to find a network of other families who also have a child with Down syndrome because I truly believe we are each other's best resources. There is a huge resource here on the internet of Down syndrome parent bloggers but I would also encourage you to find and connect with people in your immediate area because it is also good to connect in the flesh...and to begin to develop friendships for your child with other extra chromosomally kissed kiddos as well as their other friends.

...When things have calmed down and we know how things are going to play out with preschool I will blog about it because we are learning some really important lessons through it that I'd love to share. Until then....check out the king himself!

_____________________________________________ in the HOUSE!!!!

a sneak peek into Reid's Halloween costume

This was Reid's big finale pose!

Friday, October 22, 2010

31 for T21: More Alike Than Different


I have read in many books and been told on more than one occasion to, "Remember that your child with Down syndrome will be more like you, and your family, than different"...How is this for "Like me"??? A chocolate addict after my own heart. Reid, you and Mommy are going to have lots of fun!

The entry above was from my "archives" and was actually the 3rd post I ever wrote...back in August of 2008. Awww, he's changed so much. He can even say chocolate now though it sounds more like chockitts.

In the vain of more alike than different I wanted to share our last year's entry in the National Down Syndrome Congress' More Alike Than Different campaign... I had actually forgotten we had even submitted it until we recently received our poster.

Hmnn, I'm having a hard time getting the image bigger but the poster says...

Who Loves to Read More, You or Me?

My name is Reid and I love..... to read! I love big books, little books, train books, truck books, pop up books, and especially.......giggle until you fall over books!

Yup, that's pretty much him!

Kids with Down syndrome are indeed more alike than different...


Wednesday, October 20, 2010

31 for T21: Ride 'Em Cowboy!

These pictures just make me giggle!! Reid's preschool brought in a pony for the day and apparently Reid wanted NOTHING to do with it. But, the photographer was very patient from what I understand and was able to get these two shots....and I am so glad, these are such a treasure to me!

Man, my little cowboy has sure grown... in the pictures below Reid was wearing a onesie that said "Little Cowboy" on it at about 8 months. The first one in this set makes me laugh because of what you can't see, the photographer was making all these crazy sounds and flashing toys for Reid to respond to and Reid...well, he wanted nothing to do with him. I think maybe Reid was ticked at the way the guy positioned his little hand on his ear and made it all bendy...the look on his face is like, "Seriously dude, after what you just did to my ain't getting nuttin out of me after that!" ;) ... I just love his fuzzy hair in this picture though....oh and Luke's hair (that was back in the day when his hair had to be absolutely perfect or he would get so mad if even one little hair was out of place). I'm sorry but I just have to say it, it's a mom's prerogative...they are so stinkin cute!!


Monday, October 18, 2010

31 for T21: Harder Than I Thought....

Well, I have debated and debated about whether or not I should blog about the documentary I referred to in the last post. I am intentionally not going to put the name of the movie in this post because I don't want my blog to bring people looking for the movie..... because I do not want anything I write to be taken the wrong way or to be offensive in the least.

But, if I were to be completely honest I had a harder time watching some parts of the documentary than I thought I would. I think because I have "arrived" so to speak in the baby and toddlerhood aspect of parenting a child with special needs...."arrived" in that I am here and it is not scary like I once feared while laying in that hospital bed post diagnosis. It took me awhile to get my legs about me but I did and I am here and it is all good. However, I realized while watching the documentary that I am still a little nervous about Reid's future. That surprised me. I guess while watching I was reminded that we will always have hills to climb and that made me a little sad. Not that I didn't already know that but it hit me in a very soft spot....the spot where moms ferociously want to protect their children and ferociously want to ensure that their child has every opportunity to live out their dreams.

Honestly most days I forget Reid has Down syndrome, it is really quite a non issue over here and when I look to Reid's future I guess I subconsciously have expectations of him being able to hold a job and able to live on his own with buddies and I would love for him to find someone special to share his life with, that is a definite prayer of mine...all of those are. But, while watching the documentary I saw a very real reality for two families that was a little bit different from what I imagined and I had to come to terms with that may be our reality as well. Maybe, maybe not. But I had to sit with my feelings for a bit and I kind of felt like I was back in that new place again of processing what all this means for us, for our family, for Reid, and for his future as I did in the early stages.

What if he does always live with us...what kind of living arrangements will we need? What if he is able to live on his own, could we afford to buy him a place to live in? He can always work with Toby in the coffee roasting facility, Toby would love it, but what if he doesn't want to? Will he question why he doesn't have his own family? ...and all the other "what ifs" began to rest heavy on me. But, I know what the truth is and the truth is one day I will have "arrived" in that future stage as well and I will look around at my surroundings and I will say the same as I do now..."I am here and it is all good". But, it is a process mentally and emotionally and sometimes things weigh more heavily on your heart than other times. This happened to be one of those times.

Then the very next day, as life does these things sometimes... a song came on the radio that I had not heard in a long time. The very song that played in the car ride home on New Year's Eve 2006 as we were bringing our newborn home from the hospital for the first time... a song called "Take My Hand" by The Kry. As I sat and listened to the song my mind went right to the vision of all of us strapped in the car that New Year's afternoon, quietly pulling out of the parking structure and hearing the words being sung on the radio... I remember asking Toby if he was listening but I knew he was as I saw the streams of tears running down his cheeks. So, here I was now almost 4 years later sitting in my car mulling over the movie and up comes that very song again. I had to smile because it was such perfect timing for a perfect reminder that no matter what, no. matter. what. the future holds it will indeed be okay, we'll figure it out.

This was an appropriate song for our initial car ride home to start our new life back in 06... and it was an appropriate song for me to hear again this week.... (pause the music at the bottom of the blog before clicking on the song Take My Hand)

Take My Hand (Lyrics)

I know there are times
your dreams turn to dust
you wonder as you cry
why it has to hurt so much
give Me all your sadness
someday you will know the reason why
wih a child-like heart
simply put your hope in Me

take My hand and walk where I lead
keep your eyes on Me alone
don't you say why were the old days' better
just because you're scared of the unknown
take My hand and walk

don't live in the past
cause yesterday's gone
wishing memories would last
you're afraid to carry on
you don't know what's comin'
but you know the one who holds tomorrow
I will be your guide
take you through the night
if you keep your eyes on Me

take My hand and walk where I lead
keep your eyes on me alone
don't you say why were the old days better
just because you're scared of the unknown
take My hand and walk where I lead
you will never be alone
faith is to be sure of what you hope for
and the evidence of things unseen
so take My hand and walk

just like a child
holding daddy's hand
don't let go of mine
you know you can't stand on your own


Thursday, October 14, 2010

31 for T21: Will Reid get married?.... maybe I'm totally stinking at blogging all 31 days...but I'm still going for as many posts as I can.

But...real quick...almost forgot this is on tonight..actually right now 8:00 HBO


Monday, October 11, 2010

31 for T21: Our Children are matter how they're packaged

**Please note that you should pause the music at the bottom of my blog before viewing the Gifts video below......and it just may be necessary to have tissue near by!! ;)

I love the beauty and sweetness that oozes from this video...and the song, oh my goodness it gets me every time!! I first saw this about 3 years ago...and as I just re-watched it it made me smile to myself because as I saw these beautiful faces again I realized that I KNOW so many of these kiddos now.... thanks to their beautiful moms and dads who I have had the privilege of meeting through our blogs!


Sunday, October 10, 2010

31 for T21: Will He Look Like Us?

Neither Toby nor I knew much about Down syndrome before Reid was born. I actually made him promise he would not start any research until we were both ready. I felt really strongly that I did not want to know Down syndrome.... I wanted to know my son.

Probably the only piece I really knew previously was that there were facial characteristics associated with Ds and this lead me to wonder if Reid would look like us... would Luke and Reid resemble each other?

Well, a few months back one of my brothers commented on this picture of me at 3 that was sitting on my moms bookcase and how much it looked like Reid. Well....I declare he was right. Perhaps it is the longer hairstyle but I do believe he looks a lot like me. That makes me happy, I love how genetics leaves a footprint of who we belong to!

And what about these two?..... look at this side profile and tell me you can't tell they are brothers?
Have a said lately how much I love these two??

In an effort to aid in Down syndrome awareness below is a list of facial characteristics commonly found in individuals with Ds.... though an individual may have only a few or all of these.

Almond-shaped eyes
Small nose
Slightly flattened bridge across the nose
Smallish ears, positioned slightly lower on the head, with a small fold at the top of the ear
Mouth may be small
Slightly protruding tongue, due to low muscle tone and or shallow roof of the mouth
Teeth may be smaller
Flattened back of the head

** I have to put a little input in here though because I don't know why but I had a hard time typing those above. One in particular...the slightly protruding tongue. As I have scoured blogs and spent time with Reid's buddies I have not seen kids with protruding tongues unless they are really tired...heck I'm sure I even do that when tired! ;) But, I point it out because our children are born with low muscle tone which contributes to the tongue finding its way out onto the bottom lip on occasion BUT.... our children receive early intervention via occupational, physical, and speech therapy that those 10, 20, 30 years ago did not receive so you do not see this characteristic like we once did.


Saturday, October 9, 2010

31 for T21: The Itsy Bitsy Spiders...Got Talent

The Itsy Bitsy Spider not only went up the water spout.......but he also ROCKED the house, at least this house.

I had to laugh out loud yesterday when Reid came proudly marching out of preschool sporting his new spider hat!