Boston Clark Butler

It's a start!

2012-01-25T08:13:00.003-05:00

One of my current goals is to move from the bottle to a sippy cup with Boston. Up until now it has NOT gone well. I am a big fan of keep trying but he has to be ready and want to do it to. We put them up for awhile - all 50 types/styles/variations that we thought be might use.
This morning he REALLY wanted a drink of my coke zero (no hate mail please) he took a couple of sips out of the side of my cup and kept coming back for more - so I ran to the cabinet - grabbed the first sippy I saw and dumped in some coke - YES! He took about 8 drinks.
We had to take out the "stopper" that makes it spill proof. (which explains the double bib!) His muscles still aren't quite ready for that much sucking I guess - but it is a start! I figure if he gets the hang of it this way....we can add the "stopper" in later.
I did end up dumping the pop and filling it with water& juice - which he tolerated ;) We shall see!

2011-12-28T19:25:00.000-05:00

LOVE this video SO much. My hope for Boston is that everyone will not see Down Syndrome but see everything amazing that he is now and everything amazing he is yet to be!

Boston's NEW shirt!!

2011-12-20T14:24:00.001-05:00

OT with Miss Heidi

2011-12-09T10:25:00.002-05:00

Yep, it was a "lets to therapy in our jammies" kind of mornings but Boston did GREAT!
Although he was NOT sure about the Cookie Monster toy at all! Look at his face :)
Working on picking up the balls and then pushing them back through - lots of fine motor!
Stacking blocks - he did it ONCE and I got it on film - wooohoooo!
Boston would spend the entire hour on the exercise ball if Heidi would let him!
Boston is coming along pretty well with his OT goals.....my little guy works so hard!!!

2011-12-06T13:23:00.000-05:00

New jammies :)Of course this kid is cute in just about anything!

love this kid....and his t-shirt!

2011-11-26T08:02:00.005-05:00

Boston has had some pretty great tshirts over the past two years....Aunt Kristin finds the best ones! The shirt he had on yesterday is one of my favorites. Of course trying to get a picture of him wearing it was a challenge to say the least, oh well!?! Enjoy the cuteness!

A few more pictures:)

2011-11-16T11:54:00.001-05:00

2011-11-15T14:18:00.002-05:00

This past weekend Boston hung out with me and my girlfriends from college. My friend Susy and Brian brought along their camper (which by the way they made their selves!!) Anyway - Boston LOVED it! He did not want to get out of it - I think maybe it was just his size ;)

2011-11-04T06:50:00.002-04:00

Boston LOVES Pappy's newspapers! Of course Pappy needs to be quicker about reading them before Boston gets his hands on them!!!
Don't ya love the Popeye shirt?!?!?!

2011-11-01T15:57:00.002-04:00

Walking outside is an entirely different thing than walking inside. I never really thought about it to much but in Physical Therapy Boston has been heading outside to walk. There are different surfaces, transitions, distractions, and LOTS of sensory "things" going on!He works hard though!
As you can see, he was NOT wanting to work on stepping up/down.
He WAS ready to snuggle when the session was over :)

My little lion!

2011-10-31T15:50:00.004-04:00

It is way too cold to bundle up and go out Trick or Treating tonight but we had this ADORABLE lion costume that was handed down from Jackson so we had to at least put it on and play!
He was really more interested in the Wiggles that were on TV.
Does this say "come on mom, I'm over it already" or what??!!??
Grammy and her little lion cub:)
Seriously...look at that cute thing~
Big Yawn......time to wrap this picture session up!

2011-10-30T09:11:00.002-04:00

I know you all have missed my Boston updates...I apologize....It has been a little insane around the house with Brooklyn starting seizures :(
Here is a cute one for you....my little man LOVES his baths! He just looks so sweet in this one I thought- had to share!

Boston Walking

2011-10-20T16:52:00.003-04:00

I have not loaded any videos of Boston walking yet....he is doing SO GREAT now - he is ALL over the place so I figured it was past time to share it with all of you!

2011-10-07T15:26:00.001-04:00

2011-10-02T06:55:00.000-04:00

Occupational Therapy

2011-09-29T19:39:00.002-04:00

Boston had Occupational Therapy every Thursday morning with Miss Heidi....usually he works really hard for her although he does have a bit of an attitude when she tries to get him to do what she wants instead of what HE wants! Lucky for both of them he LOVES working on the big blue ball!! well....and the Wiggles...he loves the Wiggles (which is what he is watching on tv!)

We are working on increasing his strength in his arms and shoulders (this is the part where we get some attitude!)

Overall though...he does a good job for Heidi, they have become quite good buddies!

October means Awareness!!

2011-09-28T15:48:00.002-04:00

October in my house since 2005 has meant Rett Syndrome Awareness and it still does of course, however now Rett Syndrome has to share the spotlight with Down Syndrome. Who knew as I entered into my "mommy" stage of life that October would no longer just mean trick or treat and pumpkin carvings but rather shouting from the roof tops to educate the world about my kids. Actually......What are the odds that both of my kids would be special needs AND that "their" awareness months would both fall in October?
Believe me...I would give just about anything to NOT be raising awareness as horrible as that sounds! (Or I should say I wish I was not raising awareness for syndromes that have affected my family so deeply.)
That being said...
OCTOBER IS RETT SYNDROME and DOWN SYNDROME AWARENESS MONTH!!!
I am asking all of my blogger friends to help me in raising awareness in honor of Brooklyn and Boston! Please share this blog as well as Brooklyn's!
If you want to make this month extra special you can even make a donation to Down Syndrome Indiana in honor of Boston by clicking HERE.
I hope to be sharing lots of facts, videos, and research news regarding Down Syndrome here over the next month so be sure to check back!!

Birthday Boy!

2011-09-13T09:23:00.004-04:00

We celebrated Boston's second birthday last night. I still can't allow it to sink in that he is TWO already! He is still fighting a cold so was not in the best of moods for his "party" but the upside is I got LOTS of cuddles! Grammy and Pappy got him the grocery cart (a recommendation from his PT to help him work on walking) We all decided to put all of his gifts in there - he just isn't into unwrapping at ALL!

Jackson was WAY more into the cake than Boston was, actually - we had a COMPLETE meltdown right after this pic - the kid does not like messy hands - or eating cake for that matter!

The Wonder Pet flyboat from Uncle Josh and Aunt Kristin seemed to be a hit though!

Me and the kiddos :) I LOVE these little ones!!!!

HAPPY BIRTHDAY Boston....Mommy loves you!!! I can't wait to see what this next year has in store for you!

Happy Birthday Boston

2011-09-12T08:39:00.004-04:00

I still can't believe that Boston is TWO today....where does time go?? I seriously fall in love with this little guy more and more each day. I mean really - look at this face, whats not to love?! He has come such a long way and continues to inspire me. Happy Birthday Buddy!!September 12, 2011 - Boston's first birthday September 12, 2009 - Boston came into this world 10 weeks early. It nearly killed me to not hold this little guy. We for sure did not have a "typical" birth experience but he has been a blessing from the beginning and a fighter from his very first breath....watch out world!

Pictures from my sisters wedding!

2011-08-27T08:35:00.000-04:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

Update on Boston Bean

2011-08-25T14:05:00.003-04:00

I know I mentioned that Boston took FOUR steps - he continues to work hard on his independent walking but he has also made some other "strides" in his development that I though I should mention.
"Up" - Boston's PT says "up" to Boston ALL OF THE TIME. You know...working to get into sitting, sit to stand, reaching over his head, going up stairs....all the time. Anyway - during PT Boston said "UP" three times! We both were shocked. Boston has a HUGE language delay - we mainly hear Bu Bu Ba Bu - lots and lots of B sounds. "Up" was music to our ears! I know speech is taking a back seat right now since he is focused on his walking but man, this mamma can't wait to hear "mommy!"
"More" - Until yesterday Boston has shown NO interest in sign language of any kind, none - zip- nadda. And....since he is non verbal (for now) signs would be nice. Boston worked with Miss Diane yesterday during speech therapy and wouldn't ya know that runt gave the sign for "more" after almost every bite! That is until I grabbed the camera to document this momentous occasion then he was "all done" - another sign we will be working on ;)
And last but not least....this morning I hear my mom yelling.....Kelly...Kelly...KELLY...I go to the top of the stairs to see Boston at the bottom starting his way UP the stairs - I guess when his pt asked me if he was getting the hang of climbing the stairs I should have been a little less hesitant with my answer...ummm YES I think so!
Boston works SO hard and I am just SO proud of him! Although, lately he has not been the best sleeper - he fights going down for bed, even fights me on nap time so imagine my surprise when I walked out to the living room this afternoon to find him SOUND asleep....guess he decided it was finally nap time ;)

2011-08-19T17:30:00.001-04:00

These are not the best quality pictures because my mom took them on her phone but they were way too cute not to share!!! He loves snuggles with his GRAMMY!!

Bath Time

2011-08-15T11:47:00.004-04:00

"What do you mean its time to get out of the tub!!" - this kid LOVES his bath time!blowing raspberries:)

Of course MY favorite time is cuddle time with Boston AFTER his bath!!

2011-08-14T14:59:00.003-04:00

BOSTON HAS TAKEN STEPS ON HIS OWN and I have not blogged about it yet......what is wrong with me?!?!?!?
I know....I know.....I am SERIOUS BLOG SLACKER lately!!!!
I could use the excuse that I am too busy with my Rett Syndrome - Down Syndrome - Divorced Single mom life to blog......but that is just a sad, sad, excuse really! I promise....moving forward I will be a better blogger :)
WHY???? Because I know you all love both of my kids and want to hear all about their amazing little lives (and some of you still even want to hear about me!) and I will stop letting you down......I am setting myself up for major failure here aren't I?!?!?! :)
Besides, Brooklyn starts first grade in less than two weeks - that means LOTS of new blogging material for her too!
So.....for those of you who have just about given up on following my blogs - don't! I promise.....I am BACK.....and maybe even better than ever :)

2011-07-28T13:35:00.003-04:00

Two of my college buddies were in town the past couple of days helping me shoot a promotional video for Girl Power 2 Cure.
Before they left in the morning Brian took a couple of pictures of the kiddos for me . Other than Boston still being in his jammies and needing a haircut, I think they look great! :)

4th of July

2011-07-05T06:46:00.002-04:00

My little guy was pretty fascinated with the flags that my dad has. It was pretty sweet to see his face, such intrigue trying to figure out what they were. Often times I think I have taken the flag and what it means for granted actually. The freedom I have and all those who paid with their lives so that I could live in this great country. I think I could learn a couple things from the wonder in his eyes! KISSES for Pappy!

and hugs for mommy!

This smile pretty much sums up our fourth of July weekend - SO much fun!

Welcome to the Club

2011-06-29T10:35:00.003-04:00

A fellow "Rett Mommy" posted this link on facebook and I was so moved by it that I want to share it with all of you who read this blog: http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
You see.......over the past three years I have joined quite a few "clubs" The Rett Syndrome Club, The Preemie Club, The Down Syndrome Club, & The Divorced Single Mom Club. None of these were memberships I went looking for but nevertheless, I joined (I may or may not have joined kicking and screaming and possibly even crying.) However, each of them has changed my life dramatically, hopefully for the better. I want to thank each of you in these clubs for making it feel less like a club and more like family. I am a stronger woman because of each of you.

First trip to the Fort Wayne Zoo!

2011-06-14T11:30:00.004-04:00

This weekend Boston made the trip to the zoo with us - you can check out some pics over at Brooklyns blog:
http://brooklynbutler.blogspot.com/2011/06/day-at-zoo.html

Although, he spent most of his time SLEEPING! (I should have known he was getting sick!)
He did wake up in time for the train ride though :)

2011-06-06T16:42:00.001-04:00

How cute are my kiddos in this shirt?!?!? Brooklyn was 2 1/2 in her picture and I took Boston's picture in it today, he is 20 months. Serious cuteness, right?!?

2011-06-02T16:39:00.001-04:00

Here are some ACTION shots of one of Boston's new favorite activities....SWINGING!

More PT Pictures

2011-05-26T22:47:00.002-04:00

Boston is debating whether it is worth all the hard work to cruise over to the tv stand :) I can't believe I snapped this picture at the perfect time when his little face was in the mirror!

He took three steps with his dino toy during Physical Therapy this week with Callie!

He is starting to get all the buttons and levers and doors to work on the cause and effect toys....yes - we work on fine motor too :)

Boat time is here again!!!

2011-05-15T06:50:00.002-04:00

It looks like Boston is going to be quite the Lake kiddo - good thing Aunt Kristin and Uncle Josh have a boat!

It is also a great place to take a quick nap :)

This could be trouble in a few years!

Speaking of trouble - Jackson and Boston are quite the pair!

I wonder what they are plotting?

Mommy & Boston

Grammy and her babies!

Mother's Day 2011

2011-05-10T12:34:00.003-04:00

How could I not have a GREAT Mother's day when it started out with HUGE smiles from Boston :) My little guy - I love his snuggles!!!

It is not always the easiest thing to get a picture of all three of us, we tried!

Some more Bostons cuteness :)

Between the hair and the tongue.....I had to post this one. Love it!

Donation for DSANI

2011-04-28T12:48:00.002-04:00

We want to thank the Trine University Cheerleading squad! They received the Sportsmanship Award during the National Competition in Florida. This award came with a charitable donation that the squad could donate to the organization of their choice. They said they immediately thought of Boston and wanted to make a donation in his honor. $500 was donated to Down Syndrome Association of Northeast Indiana. Thank you - you all ROCK!!! I think Boston was a little smitten with Calyn!

2011-04-27T10:22:00.005-04:00

Well HELLO there!oops - don't show this picture to our PT - braces aren't on ;) He LOVES to play peek a boo with anyone sitting in the recliner!

I think he wants to take my camera and hide it so I will quit bothering him! Sorry kid, you're just too cute!

yep, back in "bear crawl" he loves it!

THIS glass is Half FULL!

2011-04-19T07:15:00.000-04:00

Yesterday I had a friend tell me how lucky Boston was - no, not because he has Down Syndrome but because from the beginning I have viewed every teeny tiny milestone as a HUGE success (and greeted them each with a standing ovation!) When you experience Rett Syndrome first, well, Down Syndrome seems "easy." Now - don't get me wrong (and PLEASE to all my amazing fellow DS mommies - you rock!) I wish I were not dealing with DS and everything that will come along with it for Boston BUT....what I mean is that watching Brooklyn loose all of her skills - I learned to be cheerful with each blessing that comes. along. I think that most moms have to work up to where I am - mourning the loss of what might have been upon receiving the diagnosis of Down Syndrome. Of course, I too dealt with that loss - but from the beginning have looked at things as what he CAN do or WILL do SOON. If anything I took the pressure off of myself and him really. So, in short. THIS glass is half FULL - thank you for the reminder ;)

Physical Therapy

2011-04-18T13:45:00.002-04:00

Boston worked very hard on pull to stand and cruising during PT today will Miss Callie. Sorry that is is not wearing pants - she likes to check out his ankles, knees, & legs during therapy! "whew, mom this is tough!" He was back at it after a little break! He even started on some stairs! In case I have not mentioned it lately, I am one proud mama - this kiddo is one tough cookie!

Bear Crawl

2011-04-17T10:53:00.002-04:00

"Hey Mom, whatcha doing?"

Boston has just started to get himself into the "Bear Crawl" position!!

He cracks me up...he will watch the tv like this!

Go Buddy!

He has taken two "steps" in this Bear Crawl position - he is getting stronger everyday!!!

2011-04-12T16:53:00.002-04:00

Poor little guy - can't keep his 12 months pants up. I wonder how long it will be until we catch up? Oh well, couldn't resist this pic! He is crawling ALL over the place these days! YAY!!!

AND of course is very into blowing raspberries!

Teething

2011-04-03T11:33:00.002-04:00

We have this little back massage thingy that we use on both the kiddos - normally on their backs...however, Boston seems to prefer it on his teeth right now, poor kiddo is cutting three more teeth right now!

2011-03-29T11:23:00.002-04:00

So...my poor little guy is sick again. Yesterday he could not keep ANYTHING down. He is a bit better today - keeping pedialite down as well as some rice cereal and applesauce - I think we will stick to the B.R.A.T diet for today.

2011-03-21T09:58:00.000-04:00

Spring is FINALLY here! Enjoy it!!

2011-03-20T08:27:00.001-04:00

YAY!! It is finally warm enough for our evening walks!!!

Occupational Therapy

2011-03-16T14:31:00.002-04:00

Boston hard at work "stacking" during OT.

Of course wee have MORE teeth coming in so he is also chewing on them all!

Of course BANGING is his favorite thing to do!

A glimpse of his crawling

2011-03-13T20:36:00.000-04:00

I know this is a very short video with REALLY bad lighting BUT you have been waiting for video of Boston crawling and I finally go it! WOOHOOO - look at my little guy go!!

2011-03-09T10:25:00.001-05:00

Boston snuggles are the BEST!

2011-03-06T22:41:00.001-05:00

My poor little guy....this flu has been tough on him - good thing Grammy loves nothing more than to cuddle with him!

Retard - it is NOT just another word.

2011-03-04T11:10:00.003-05:00

I came across an amazing blog this morning, this mom is....well.....amazing!

Retard, retarded, any form of the word really makes me sick. I know people say it is just "part of the culture" or whatever LAMO excuse they have but it is NOT ok. Just because you don't "mean to offend" doesn't mean that you don't. In all actuality you MOST DEFINITELY DO offend. You offend mommies like me who are raising AMAZING special needs kiddos. You offend kids, teens, and adults who are disabled.

I want to encourage all of you who follow my blog to check out THIS POST over at "Love That Max." It is an eye opener for sure. I am not sure I could put myself through the hurt and frustration that this mom is via her tweets but I give her credit - she is out there fighting her fight for her son - for all of our special kiddos.

I guess all I am saying is think before you speak. For me, for Brooklyn and Boston, for everyone out there each amazing in their own way. Sticks and stones can break my bones but words - yeah they hurt too!

2011-03-01T11:55:00.001-05:00

Boston sure loves his Pappy!

Where is that baby gate???

2011-02-28T12:42:00.002-05:00

BOSTON IS ON THE MOVE!
Last night out of no where Boston gets completely motivated by Aunt Kristin's cell phone - he crawls completely across our living room floor to get to it! I mean a BEAUTIFUL crawl! I know we have been working on crawling for quite awhile but up until last night it looked more like a mix of a log roll, army crawl/drag, and regular crawling.
Of course - when I ran and got the camera there would be no repeat performance but I am now on a mission to capture this all for the world to see!
I am one proud mamma!
We also met with our PT this morning from early intervention and we had to write ALL NEW GOALS...why? Because he has MET all of the original goals!!! I am pretty sure it is coming across in my typing but I am SMILING the biggest, best smile ever right now!
Now...where in the world did I store that baby gate??!!??

2011-02-24T20:54:00.001-05:00

I sure do love my cousin Jackson....but I am not sure this basket is big enough for the both of us :)

2011-02-18T08:57:00.002-05:00

Why is it that on the nights that I am the most tired is when Boston is in the mood for a late night party?!?!

2011-02-13T09:30:00.002-05:00

Thought I would update everyone on Boston...he is still not feeling the greatest. I did take him to the doctor on Friday and lungs are clear and ears look good. He is just a congested, snotty mess. Johnson's "soothing vapor bath" is my new favorite purchase. It bubbles up like bubble bath - which he LOVES and also has a great "Vicks-like" vapor! On the upside he did weigh 16 pounds when we weighed him so we are making a little progress in that department - although 16 pounds and 17 months old is not the greatest - he has come a LONG way from his 2 pound 3 ounce start!

2011-02-11T10:55:00.002-05:00

Boston discovered the cool air coming out of the humidifier this week. We keep one running in the living room where he plays.

This was his reaction to the air hitting his face...HAAHAAAAHAAA

Physical Therapy

2011-02-08T10:06:00.003-05:00

Boston was not all that thrilled with PT this week, but Miss Callie did not give up! I took some pictures of him working on the exercise ball. Apparently, as long as you tickle him while he is working he is cool with it.

We keep working on building that arm strength - gotta get this kiddo crawling!

He works so stinkin hard - I love him!

2011-02-03T13:11:00.001-05:00

The kid plays hard...what can I say ;)

2011-02-02T12:07:00.002-05:00

Napping with Pappy is one of Boston's favorite times! He naps TWICE as long if he is in bed with pappy. When I peeked in to check on him they were laying the exact same way...too cute not to post ;)

WOW.....Who is the BLOG SLACKER?!?!?

2011-01-31T16:37:00.002-05:00

I promise, it is not that I have stopped taking pictures of this adorable little guy....I just realized I had not blogged them! SO SORRY to all of my faithful blog followers - thanks for not giving up on me :)

These days mommy's bed is his FAVORITE place to sleep!

Well....Grammy's bed works too!
Another GREAT shirt ;)

Some serious cuteness happening here!

He manages to get into the weirdest places!

He is doing amazing - we have FOUR teeth now! He is doing OT and PT weekly working on crawling, kneeling, sit to stand, lots of weight bearing and of course taking assisted steps. He is doing ok on feeding - we have started speech once a month right now to work on feeding and also to start some sign language with him. He is just SO MUCH fun! Check back often, I PROMISE to post more!

My new hat!

2011-01-17T11:38:00.001-05:00

Thanks to Jackson for passing down so many cute things!!

and...he is UP

2011-01-13T11:27:00.002-05:00

I told you....this kid rolls EVERYWHERE!

Chillin....watching some tv....

Then....he popped up!! ALL BY HIMSELF!

It is official....he can get from lying to sitting on his own...another milestone checked off the list! :)

Splish Splash Boston is taken a bath

2011-01-08T21:03:00.006-05:00

One of Boston's favorite times lately is bath time. Maybe because mommy finally took him out of his baby seat and I let him sit up and splash and play :) Jackson decided to join in the fun tonight. He thought it was cool that their hair matched!

Jackson was giving Boston some kisses - yes, Boston gets a bit violent with his love....we usually get nibbled on instead.

Such a doll.

SMO's

2010-12-29T10:52:00.002-05:00

Boston's SMO's were delivered today! Chris from Midwest Orthopedics was so great with him - and said these were the smallest SMO's he has ever fitted :) He seems to like them.....we are going to be up and walking in no time!

You can't really see the design but it is Disney's "Cars"

The braces will help keep his feet from pronating (turning in) and in turn will help keep everything in line up through his knees and hips as he grows!

2010-12-28T16:26:00.001-05:00

He isn't going anywhere yet....but he sure likes to sit on his new toy :)

2010-12-26T11:47:00.001-05:00

Nothing better than snuggles with Grammy on Christmas Day!

waving

2010-12-23T09:23:00.001-05:00

Pappy and Aunt Kristin have been working so hard on teaching Boston to wave. Their determination has paid off :)

2010-12-22T17:05:00.000-05:00

Boston, Brooklyn, and I want to wish all of you a very Merry Christmas! We pray that as 2010 wraps up that you have many things to be thankful for. We want to thank all of you who faithfully read this blog and continue to pray for us! Your love and prayer gives us strength more than you will ever know! Hugs to you this Christmas season!

2010-12-20T14:55:00.001-05:00

I know...you all want to jump through this screen and kiss this cute face don't you!?!? Seriously...look at this little guy. LOVE HIM! And he LOVES his Pappy! Is this not the sweetest picture ever?

Physical Therapy

2010-12-15T16:04:00.003-05:00

Boston works so hard during Physical Therapy (well, most sessions anyway!) We have mastered sitting so now our focus is on crawling. Of course he can get just about anywhere he wants by rolling so he is not all that motivated to crawl.

He likes the toys his PT brings :) always nice to see "new" stuff. Here he is showing off his sitting.

He even sits and plays with toys without losing balance!! WOOHOOO!!!

He likes taking the rings off WAY more than putting them back on!

Yep, I love this little guy! He is one tough cookie!

2010-12-11T10:20:00.002-05:00

My favorite times are when I get to snuggle with both my kiddos. Boston is really interacting with Brooklyn these days. (Of course that also includes some hair pulling and eye glasses stealing) but all in all it has been really fun watching them together!

How did he do that?

2010-12-09T12:55:00.002-05:00

So....I came out to the living room and found Boston UNDER his bouncy seat. Even though he is not crawling yet, he manages to get just about anywhere!!

2010-12-07T10:34:00.002-05:00

Facebook can generate your "year in status" for you. It was interesting to see some of the thoughts I had throughout 2010. It might be easier to read via this LINK. It is safe to say that I am ready to close the door on this year and hope that 2011 will be a better year.

2010-12-06T19:15:00.002-05:00

It is hard to see in the picture but he got a haircut! :) No worries....it is still "happy hair!"

Peek A Boo!!

2010-12-05T20:00:00.001-05:00

2010-12-02T06:02:00.000-05:00

Boston with his Grammy and Pappy....he is one LOVED little guy!! His cousin Jackson is his best buddy :)

2010-12-01T11:58:00.002-05:00

Not sure if you can see it really but he has SUPER "happy" hair today :) I gotta get this poor kiddo in for another haircut!

2010-11-29T10:46:00.001-05:00

Boston liked being in the middle of all of the action at Aunt Kristin's on Thanksgiving :)

Happy Thanksgiving!

2010-11-25T09:09:00.001-05:00

*There have been days in the past that I cry and pout and maybe even kick and scream because I hate that my kids have to struggle with everything that comes along with the their diagnosis of Rett Syndrome and Down Syndrome. Today however is Thanksgiving and I want to focus on all of the reasons I have to be thankful.

I am THANKFUL for my special needs kiddos because...
they have taught me to ALWAYS trust my gut instincts as a mother

they remind me to always believe in them….and they continue to amaze me

I now work to understand research and find ways to financially support it

they helped me learn to let go and realize I am not in control of everything in my life

I now realize the only limits my children will have are the ones that I place on them

I have found my voice and the confidence to use it to fight for them

my family now includes hundreds of amazing people that would have never come into my life if Down Syndrome and Rett Syndrome were not a part of my world

they were given to me specifically to love and be loved by them

they have taught me so much and continue to change me (for the better) every day

they remind me that it is okay to be frustrated, sad, or angry….all perfectly normal feelings (that I might even experience all at once)

I now am invoved with an amazing non-profit organization (GP2C) that allows me to help make a difference every day.

when people stare or whisper, I don’t get angry (usually). I now take it as an opportunity to educate them about Rett Syndrome….thank goodness for my Purple Cards!!!

I have become a much more organized person, with medical records, early intervention paperwork, IEPS, and special diets I sort of have to be

I also no longer cry when my organization completely fails me

I no longer feel sorry for parents of special needs kids, there is no need for sympathy, just love, support and understanding that their lives are a little more complicated than most

their smiles remind me that everything is going to be ok

I have become a better woman, daughter, friend and mother

2010-11-23T09:59:00.004-05:00

Uncle Josh and Boston playing before the program starts.

Aunt Kristin and JacksonJackson was the BEST turkey ever!

AND....check out his drawing of a turkey!

Mommy and Boston after the program.

Working hard in OT

2010-11-04T17:02:00.004-04:00

Boston worked SO hard during OT today. He is working on sitting up on his own. Here he is prop sitting with his drum. His core is getting so much stronger! Kris made sure I saw that her hands were NOT on him :) Kris also showed me how to use his Boppy to give him some support, it also helps keep his legs down. He tends to lift his legs up which of course makes him topple over. He works SO hard. I am one proud mamma!

giggles

2010-11-04T10:34:00.003-04:00

After Boston's bath he was ALL smiles. He LOVES to play and be tickled. His giggles are just too amazing not to share with all of you. I hope my little guy can bring a smile to YOUR face too :)

2010-11-02T16:08:00.002-04:00

I "met" this amazing mamma online. She Has three BEAUTIFUL daughters and one AMAZING adopted son (who happens to have Down Syndrome) She is passionate about adoption of Down Syndrome kiddos and is praying and planning to once again welcome another blessing into her family. Of course, this is an expensive process and in order to help with the adoption costs she makes these GREAT "Signs of Faith." I encourage you all to check them out - perfect for Christmas gifts :)
Here is another link to more of her awesome signs.

Happy Halloween :)

2010-10-31T12:14:00.001-04:00

Boston was a frog this year :) ADORABLE!!

Ready to be out of the froggie outfit :)

2010-10-27T16:27:00.003-04:00

We took advantage of this beautiful weather to get outside and take some fall pictures:)

2010-10-26T10:21:00.002-04:00

My BIG boy can hold his own bottle now :) Grammy says she does not like this new skill - she likes cuddling and feeding him I think!

2010-10-22T14:07:00.002-04:00

Seriously could not resist posting this one :) Brooklyn wore it to school for "hat day." Boston ended up wearing it at dinner that night. She thought her little brother was SO funny as a flower! He makes a stinkin cute one if you ask me!

Amsterdam International

2010-10-20T12:58:00.003-04:00

I hope all of my Special Needs Mommy (and Daddy) friends take a few minutes to read this - The Welcome to Holland Poem I love but this description of the "arrival" - wow......she puts into words what I couldn't!!! - Kelly

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this: Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . .but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all. And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

http://niederfamily.blogspot.com/2010/10/amsterdam-international.html Dana is the mommy of a beautiful undiagnosed sweetie!

To contact Dana directly please email her: uncommonfeedback@gmail.com

2010-10-19T16:01:00.003-04:00

Boston LOVES my hair. He loves to chew it, twirl it, pull it, you name it! He falls asleep twisting it between his fingers! Don't send me hate mail....he was NOT eating these noodles! He is not ready for that yet but it was the best toy ever during dinner!

Sound asleep in his swing.....sweet little muffin!

If only I knew what he was thinking!

Check out the two teeth!!

Maybe a little "over it" enough pictures already I think :)

This was actually the first one we took, love that smile!

2010-10-18T15:49:00.001-04:00

Hanging out with my big sister :)

2010-10-08T16:14:00.003-04:00

Jackson was trying out Brooklyn's bows and thought Boston needed one too :) Brooklyn was not near as excited as the boys were!

2010-10-05T16:27:00.002-04:00

My little TV junkie...checking out what time his shows come on so mom can set the DVR :)

2010-09-28T11:50:00.002-04:00

Boston is FINALLY big enough for his exersaucer type thing. (Well sort of, he is still not heavy enough to drop his feet completely to the floor so we use a blanket to even him out) Anyway, he LOVES it! He will stay in there until he wears himself out!

And even then, would nap in it if I let him :)

Homework

2010-09-15T16:17:00.002-04:00

Should I be worried?????I think Brooklyn is ALREADY bribing her little brother into doing her homework!!

Or maybe he is just cleaning out her homework folder :)

Looks guilty if you ask me!

2010-09-12T06:00:00.001-04:00

A year ago today (at 1:38 pm to be exact) my sweet Boston came into this world, 30 weeks early. My little fighter. I was terrified. As a mother my job was to carry him, nurture him, help him grow for NINE months but for some reason that was not the plan for this little guy. He was born weighing only 2 pounds 3 ounces and fighting for his life. Do you know the pain of not being able to hold your child after birth, to see a team of 6 people all helping your child fight to live? It is something I wish no one would have to endure. It was heart breaking.
I remember them rolling him by my head and his teeny tiny little hand sticking up in the air....almost like he was waving at me....his mom...the one lying there unable to do anything. It was the most helpless feeling I have ever felt to this very day. Little did I know that we would be in the NICU for the next 80 days enduring bowel surgery, cystic fibrosis testing, a battle with life threatening NEC, and of course our Down Syndrome diagnosis. WOW, just typing all of it is a bit overwhelming. I have tears in my eyes as I think back to this time, the uncertainty of it all. If you are new to reading my blog, feel free to start at the beginning to catch up here. It has been quite a year for sure. Back then, this first birthday seemed like a lifetime away, but here we are! Celebrating this amazing little life. The life of my son Boston, my little fighter. I would like to say that he is done fighting but unfortunately that is not true....any child with special needs has a fight on their hands. One thing is for sure. This mom is in his corner....celebrating every small victory that comes with each new day......HAPPY BIRTHDAY SWEET BOY!

First Birthday Pictures!

2010-09-10T10:01:00.004-04:00

Mommy had to start the session being a little silly....anything for a smile;)

Seriously...what a cute kid!

SMILE!

Mommy and her favorite little guy!

He is teething...so hard to keep those fingers out of the mouth!

getting ready to blow raspberries, a new favorite pastime!

Too cute for words really...

his cousin Jackson wanted a picture with him - just too cute not to post!

We tried to get sissy in the picture too - SOOOO not happening. I have a couple but they are all filled with frowns and tears :( maybe next time!

2010-09-05T17:56:00.002-04:00

If you are coming to visit, leave your magazines at home, they are NOT safe in this house!! :)

2010-09-03T06:00:00.001-04:00

Seriously....too cute for words...right?!?! His sure says it all....Mommy's All Star....That he is!

"Hey mom NO MORE pictures...."

"Ok, one more cuteness pose..."

PEEK A Boo!

2010-09-02T10:33:00.002-04:00

Boston loves a good game of Peek A Boo and mommy sure loves his giggles!!!

The many faces of Boston

2010-08-30T07:09:00.003-04:00

This is the super sad lip - and yes he can bring it on SO quick (he OWNS his mommy with this one!) "what, me mommy? I don't do that!"

Yep....he is now a thumb sucker, although I think he just likes feeling that little tooth in there!

If this doesn't say "I'm trouble" nothing does :)

This pic is for Uncle Josh who got him this adorable shirt when he was born and Boston FINALLY fits in it!!

2010-08-24T12:05:00.002-04:00

Boston wanted to join in on the Birthday fun - at least he wanted a taste of one of Jordan's cupcakes!!! He LOVED it of course!

It's a good thing his cousin Jackson likes to share with him!

2010-08-20T13:01:00.002-04:00

I apologize for the lack of blogging, it has been crazy busy around here the past couple of weeks. Boston was down with pneumonia, I make a quick trip to Vegas to meet 9 other Rett Syndrome mommies (which was AMAZING by the way!) Plus, Boston's big sis Brooklyn started Kindergarten!
I HAD to post today though...my little guy was engrossed in the TV when I walked in the room...what was so fascinating????
Daughtry :) He was performing live on the Today show...too funny!

"Hey mom.....you busted me singing along!" "I am about to be blogged, right?!?!" ;)