Life With Ty #25 - If I could tell you - Parents' Edition!

A couple of weeks ago, I wrote a post about explaining Down Syndrome to children.  But I got to thinking, and realized that parents are sometimes the ones who need to be educated first!  I promise this realization is not inspired by any of you that I know!  It came up after a recent class that Ty attended, and it occurred to me that sometimes other parents may not know how to act toward a little guy with Down Syndrome, and often "over-compensate" to be extra nice to him.  It got under my skin just a tad! :)  So if Ty could give those parents a piece of his mind, it would sound a little like this...

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If I could tell you something about me, it would be that I am way more like your two year old than you think!  Most of the time I am on a mission, and when I don't get my way, I can get a little loud!  If I see a toy that I want, well, I grab it!  I don't care if it's in someone else's hand...if I want it, it becomes mine!  I also get really tired of listening to my mom tell me to do this and that.  She should know by now that I really prefer to operate on my agenda, not hers.  I have definite likes and dislikes, and I make sure the world knows what they are.  I mean, come on, I'm a two year old, I'm not perfect!

My mom, she's a tough cookie though.  She does not like to let me get away with anything!  If I take a toy from another kid, she actually makes me give it back, and doesn't seem to care one bit about my protest!  On those rare occasions when I'm really naughty, she even has the audacity to put me in time-out!  She also makes me wait my turn when I really want to do something, but it's not time to do it yet.  I get so sick of hearing, "First ______, then __________."  Blah, blah, blah.  I try to tell her, "No thanks, I don't want to change my diaper first, and then use the computer," but apparently she doesn't care.  She sure likes to get her way, a lot!

But you know what?  As much as I hate not getting my way all the time, I'm actually turning into a pretty good kid because of all of my "training".  Sometimes, if I'm in a "giving" mood, I'll willingly give back a toy that I take from a friend, and even do it with a smile (or not take it at all!).  And even though I do get time-outs on occasion, I sure learn my lesson quickly, and usually try not to do it again!  And even that darn "First ____, then ____" sentence I hear all the time...well, Mom must know what she's talking about, because I'm actually starting to like hearing it, since I know I'm going to get to do something really great in a few minutes!  I'm starting to realize that Mom will say a lot of nice things about my behavior and give me lots of hugs, kisses, and high-fives, if I do the right thing in the first place, so I try hard to do that now instead!  (Silly mom, she has no idea that I've figured out her little ploy!)

So my point is, help my mom out a little bit.  If I take something from your kid, please don't insist that I keep it!  Mom is trying to teach me good manners by making me give it back, and you being super nice is making her job quite difficult!  And really, if I want to use the swing that your kid is getting on, it's okay to make me wait my turn, instead of taking your kid off and making him wait instead!  I mean, what kind of world would it be if two year olds were all allowed to get what they wanted every time they made a scene?!  I'm pretty sure earmuffs would make a quick comeback! 

Basically, my mom is working just as hard to make me a responsible, respectful little boy, as you are to accomplish the same thing with your little boy or girl.  The fact that I happen to have Down Syndrome does not give me any sort of "free pass" to be a little wild-child in public!  Please continue to say hi to me, and include me in your games, and cheer me on when I try something new...but it's okay to drop the over-polite routine.  I promise, my Mom will thank you for it!!! 

Life With Ty #23 - Someday in the Future

We talk a lot about what Ty's future holds.  Our plans for him have changed drastically over the last two years, too.  When Ty was first born, we didn't know a whole lot about Down Syndrome, and what life was like for adults with DS.  Our goals for his future at that point included making friends, going to school with his typical peers, and getting a driver's license.  And while those are still goals we have for his future, our perspectives have widened greatly.

One of my biggest goals for Ty is to attend college.  He may not move away, live in a dorm, and become a frat boy (the last of which is A-OK with me!), but there is absolutely no reason for me to believe that he is not capable of attending college and graduating with a degree.  Every year, more and more colleges are offering supports for students with special needs, and are making post-secondary education a reality for kids like Ty.

So that's my goal for him.  Ty's goal?  Well, that's something that will be up to him.  I can't wait to see what his interests are as he grows and develops a sense of self.  I look forward to that day when I can ask, "What do you want to be when you grow up?" and hear what visions he has for himself.  Best of all, with the possibilities today, I can be encouraged that Ty's goals for himself can become a reality someday, with the right supports in place.

This past weekend, we visited our old college, where Eric and I first met.  We sat on the main stretch of campus, and set Ty free.  He took off without hesitation and walked up and down campus, waving at the students who he passed.  Watching the confidence he had in himself, I could clearly see my little guy 16 years from now, repeating that same walk as one of the students.  It was a sweet moment for me (and an exhausting one for Eric, who patiently followed him back and forth across campus!), and one that solidified my goal that someday he would have that experience.

  

Life With Ty #20 - Celebrating Milestones

This week's common topic..."Celebrating Milestones"

 

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So I'm sitting here thinking about milestones Ty has reached lately.  If you're going by the developmental milestone charts, well then I could talk about how Ty can stand on his tippy toes now, or throw a ball overhand.  He is working on dressing skills, and on sorting colors into groups.  All of those things that can be checked off on a chart to show how Ty is progressing.  But really, those aren't the milestones that I focus on lately.  It's the little things that Ty does that make us say, "wow, he's like a little boy now!" that stand out in my mind when I think of Ty's milestones.  They will never be found on a milestone chart, and will never be taken into consideration when determining his current progress.  But they are the little moments in life that matter, and make you smile when you look back on them.  Those are the milestones I celebrate these days.

 

Probably the cutest little milestone is Ty's learning to play fetch with the dog.  The thing about him these days is that he watches everything and misses nothing.  (He repeated a hand gesture that he saw Daddy make in the car today...he really misses nothing!)  So he was watching Eric throw a toy for the dog to chase, and thought it was hilarious how Nick brought back the toy every time.  After the game was over, we peeked in the living room and caught Ty taking the toy from Nick and throwing it across the room.  The cutest part...when Nick didn't move, Ty waved his arm to say, "come on!" and show him where to go!  Now, it's become a regular event in the house. Whenever Nick starts chewing his toy, Ty pops out of nowhere, takes it from him, and throws it to start a game.  Sometimes Nick participates, sometimes he doesn't, but each and every time we laugh...it's a milestone that never gets old!

 

Here's a sneak peek at this milestone:  Playing Fetch With Nick

 

 

Then there's the game that Ty plays with me.  It's called, "1,2,3, Go!"  A few mini-skills have had to happen for this game to take place.  First, we are working on counting lately, which is where this game originated.  Not only are we working on counting, but Ty is working on holding up the correct number of fingers (which is pretty darn cute to watch on its own!).  Next, Ty started "running" recently (more like a very fast walk with a little pep in his step).  Finally, Ty's new word is "bop!" (stop!), which makes for a dramatic finish to the end of this game.  So this is how it's played.  Ty stands on one side of the room.  Together, we say "1, 2, 3, Go!" and his little legs take off in a trot across the room as he yells "Run! Run! Run! Run!"  When he reaches the other side, we say "Stop!"  And repeat.  It is the perfect game for running off excess amounts of energy!  What I love about this game though, is that my son is playing a game with me!  As simple as that milestone is, it's one that makes us smile every time!

 

Watch our game in action:  Run, run, run!

 

 

So as you see, milestones don't always appear on charts or graphs, or get reported in annual evaluations.  Sometimes the best milestones...the ones most worth celebrating...are those that are simply embedded in everyday life.

Life With Ty #17 - Communication

Communication has always been one of Ty's strengths, and one of his greatest challenges.  I've come to learn that speech and language is multi-faceted, and cannot simply be broken down into what a child knows and what a child can express.  In fact, receptive and expressive language are comprised of several sub-groups of skills, each of which makes up a piece of the whole speech and language puzzle.  It's pretty fascinating, actually. So for Ty, some of these pieces come very naturally, and some he really has to work hard to learn and master.   It's been quite a journey, and I am so incredibly proud of where Ty is today.

How can you not be proud of a kid this cute?!

At 7 months old, Ty was given his first gift that opened the doors to communication for him:  ear tubes!  Up to that point, Ty had persistent ear fluid, which caused mild-moderate hearing loss, depending on how much fluid was present.  In turn, he really did not have any distinguishable sounds though he was a very vocal baby.  Within a week of getting his "magic tubes" though, we heard the sound we (Eric, mostly!) had been dying to hear..."dadadadada!"  It was like Ty finally could hear what we were saying and realized, "Hey!  I can do that, too!"  By 10 months, he was calling Eric "dada" meaningfully, and would happily yell "dada!" when he came home from work.  At 11 months though, it was my turn!  I went to pick up Ty from daycare, and he happily said "mama!" and patted my cheek when he saw me.  Not to leave the dogs out, this was also the time when Ty began calling the dogs "da", so in just four short months since the surgery, he already had three word approximations.

We began the sign language journey at 12 months old.  Though we had been signing to Ty since he was an infant, this was the age when he realized our hand motions had meaning.  At first, he would copy our signs when we did them.  Over time, he started to use them on his own, and pretty soon had a small collection of words that he spoke with his hands to express his basic needs.  It was an amazing tool to supplement what he could say verbally, and also to avoid any frustration or miscommunication on his part.  Looking back, introducing sign language was probably the single most helpful thing we did to support Ty's speech and language development.

As his sign language picked up, so did his spoken language.  By 18 months, Ty could say 20+ words, and had even more signs in his repertoire.  However, this is where those subtle challenges began to present themselves.  Though Ty could say several words, we realized that most of them began with the same letter - b.  We also noticed that most of them ended with the same letter - s, or d.  So while he could say a lot, he was unable to branch out from the patterns that he was most comfortable using.  It was also around this time that we realized Ty's ear tubes were no longer functioning.  With his hearing-loss returning, he was undoubtedly not hearing sounds and words correctly, which was contributing to his inability to branch out and use words with different sounds and patterns.  To the credit of our amazing ENT who wastes no time, Ty got his second set of ear tubes immediately, and we were able to continue on our speech and language journey again. 

At 20 months, we met Ty's current speech therapist, Emily, who has been an amazing member of our team.  When Ty began therapy with Emily, he was still very much stuck in the pattern of saying words that began with "b",  and was not imitating very many sounds or words outside of the ones he already said.  Speech therapy started out slowly.  In those first few months, she focused largely on getting Ty to use signs (or the words he knew) to request something.  In a matter of a month or two, Ty went from having 30-50 signs to 150+ signs in his vocabulary.  Somehow, Emily flipped the switch that allowed Ty to realized that everything had a corresponding word or sign.  Of course, up to that point he knew that certain things in his world had words or signs - eat, drink, bath, book, dog, etc.  He understood those ones as they pertained to his life.  But Emily pushed him further and helped him realize that everything...even things that he has never seen before...have names.  This crucial step in language development led to the typical toddler game of "what's that?!"  In those couple of months Ty frantically played catch up and picked up at least one new sign every day...if not more.  He would point to something, I would show him the sign, and he could use it independently from that point.  It no longer took repetition or practice to learn signs...he just absorbed them like a sponge!  I would say that was the most important turning point in Ty's language development to this day!

Once that lightbulb went off, Ty's speech and language progress just exploded.  He started to use "touch cues"...signs done against the face to remind a child to make a particular sound, and expanded the amount of consonant and vowel sounds he was able to make.  He started repeating words when he heard them, which really expanded his spoken vocabulary.  Week after week, he happily walks his little self into the speech room and sits in his chair to repeat words, practice saying words with certain syllable patterns, and practice saying new letter sounds.  It's such difficult work for him, but he does it with a smile, and always walks into the waiting room to greet me with a smile after his session.  He loves it. 

Today, Ty still mainly uses sign language to speak.  BUT, very slowly, he is replacing those signs with actual spoken words.  Just recently he began saying the word "eat" to tell me he's hungry, rather than signing "eat".  The best part is, he says "eat" (or "et" as he says it) with the biggest smile on his face, like he knows what an achievement it is that he made that transition to the spoken word!  He's also began to use prepositions to describe the world around him, which shows good comprehension of his surroundings, but also an expanded and more sophisticated vocabulary!  For example, when he wants to get out of the playroom and roam the house he says "out"!  Or when he wants to turn a toy on he'll say "on".  And when I dress him in a zip-up sweatshirt, which he has recently learned how to unzip and take off, he'll proudly announce "off!" as he unzips it and strips down to his undershirt.  Stinker!  He probably has around 30 words in his spoken vocabulary now, which are mostly understandable, and start and end with a variety of letter sounds (the greatest achievement!!!).  He has even begun to speak 2 word phrases in therapy, which is HUGE!  The best part is, I know how hard he has worked for every single one of those words, and pride just shows all over his face when he speaks a word and is understood by someone else. 

Though it has been a challenging road to travel with Ty, speech and language is by far my favorite to see progress, and is so rewarding.  Several times a day, Ty picks up his phone (a fake one!), walks around the house with the phone to his ear, carrying on a conversation that he finds hilarious.  When I ask him who he is talking to he always has someone different on the other end...sometimes it's his aunt ("aut" as he calls her), sometimes it's his grandmother "lala", and sometimes it's his other grandmother and grandfather "nana and papa" (he always lists them as a pair!).  He most definitely has an imaginary conversation going on, and I look forward to the day when I can distingish more than a word or two in that imaginary play!  (He's a pretty funny kid...I'm sure he's got some good scenarios happening!)  For now, I'll take the new words that I hear, and appreciate every milestone in this journey, no matter how small.  Little boys who work this hard deserve BIG celebration! :)

Life With Ty #13 - If I Knew Then What I Know Now...

This week's common topic..."If I Knew Then What I Know Now"

 

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If I knew then - as a new mom, just starting out in the world of Down Syndrome -  what I know now, above all, I would just relax. 

When you begin the Down Syndrome journey, it's like busting out of the starting gates, running hard, and running frantically.  You read book after book in between feedings and diaper changes, trying to learn all that you can about this little person in your life, as fast as you can.  You scour websites looking for "facts" about Down Syndrome, and stumble upon numerous online support groups with mothers just as obsessed with learning this information as you are. 

You memorize milestone charts for both typically-developing children, and children with Down Syndrome, and spend a good part of your day analyzing your newborn's every move and sound, trying to track his progress on a chart to determine if he's "on track" or "behind".  While your child is awake, you worry about providing enough tummy time, enough stimulation, enough language exposure, to ensure that he doesn't "fall behind". 

Doctors become your most frequent social interaction, and you very quickly learn the medical terminology necessary to understanding your child's health.  Your heart skips a beat at every squeak, every cough, every longer-than-usual nap, wondering what is "normal" and what could be a sign that something is wrong.  And when you decide that those signs do warrant a call to the doctor, it's not the pediatrician that you're calling...it's a cardiologist, a neurologist, an otolaryngologist...ologists who you didn't know even existed before you entered this world. 


Looking back, if I could go back and repeat this journey with my current knowledge and experiences, I would just relax.  I would put the books down and turn off the computer.  Instead, I would let the little person in front of me be my source of education.  I would let him teach me about Down Syndrome, rather than relying on others' descriptions of who my son was.

I would throw out the milestone checklists, and let my son reveal his own personal timeline.  I would realize that no matter what I do, some things he will just do in his own good time...but he will do them.  I would spend much more time snuggling and sniffing that sweet baby smell, and playing with him because it's fun...not because I'm "supposed to" do particular activities.

And the health thing...well, sometimes there are certain aspects of this journey that are what they are.  As scary as it is, medical complications are real, and you do have a heightened awareness that most new parents don't have to experience.  However, in the medical world, I would trust my own knowledge of my child more than I did.  I wouldn't be afraid to question a doctor's recommendation, and would seek a new doctor when I no longer trusted ours.  I would have more confidence in my abilities as a parent to manage my son's healthcare needs, and to make the best decisions for him. 

Down Syndrome is a journey, not an event, and you don't need to "do it all" right at the starting line.  It's okay to just relax and enjoy parenting that little child of yours, because the rest will eventually fall into place. 

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Life With Ty #10 - Smarty Pants

Smarty Pants

 

 

Did you know that my two year old can read?  Not just my two year old, but my two year old with Down Syndrome?

 

 

If someone had told me two years ago that my little boy with Down Syndrome would read his first word before his second birthday, before he could even walk, I would have rolled my eyes at their sugary-sweet optimism.  I mean really, look through any list of characteristics of individuals with Down Syndrome, and "mild to moderate cognitive impairment" is almost always in the top three.  So does a toddler with Down Syndrome learning to read seem realistic?  Did it seem realistic to me two years ago?  Not even close.

 

 

However, Ty can read.  I discovered this by accident one day, when I caught him signing a word that I was showing to him...just a word, no picture attached...when he was just 22 months old.  Now, I was exposing him to early-reading concepts at the time, but really didn't expect to see much result for quite a while.  Boy was I wrong...those low expectations will come back to bite you in the butt every time! 

 

 

Today, at the age of 2 1/2, Ty has a sight word vocabulary of somewhere between 75-100.  Not only can he read those words, but he knows what every single one means.  (The teacher in me puts a lot of weight in being able to comprehend what you're reading, not just being able to read in general!)  He also knows almost all of the letters in the alphabet, upper and lower case, and the sounds that the letters make.  And the icing on the cake...when I present him with a word he doesn't know, he will often focus in on the first letter of the word and make that sound in attempt to "sound out" the word.  Early decoding skills at their finest!  (The teacher in me also puts a lot of weight in being able to decode or "sound out" unfamiliar words!)  And this is my 2 1/2 year old with Down Syndrome.  Incredible.

 

 

Can you tell I'm proud of him?!  I don't know if typical two year olds can read sight words, or when kids typically start to read words in general, to be honest.  But this is Ty's strength, and he truly amazes me with his knowledge every day.  Since this is my blog, I can brag about my bugger all I want, and need to show off his skills so you can see them firsthand!  So here's a recent video of Ty reading a few of his words.  Some words he is able to read by speaking, others he reads by signing or acting it out.  Either way...he's reading!  Such a smarty pants!

A Little Sample of Ty's Skills:  Ty Reading

  

Life With Ty #9 - If I Could Tell You...

If I Could Tell You...

 

 

At the beginning of the 31 for 21 Challenge, one of our first friends from Virginia asked if I could dedicate a post this month to a particilar topic.  He asked if I could educate parents about how to teach their children about other children who have Down Syndrome.  Wow.  First of all, I'm so touched to hear that someone has come to understand the value that children with Down Syndrome have in this world from reading about Ty.  But I'm also so grateful that someone wants to teach his own child about Down Syndrome, bringing a little more acceptance into the world.  So then my personal challenge began.  Honestly, I've never really thought about how other children might perceive a child with DS, and I've definitely never thought about how I might educate another child, or even Ty's siblings down the road.  It's such a crucial topic to write about and share with others, though.  Thanks for the request! :)

 

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If I could tell you about Down Syndrome, I would tell you that above anything else, I'm just like other kids!  I love to drive my trucks around the house, and laugh when they crash into the wall.  I climb on every raised surface that I can reach, and am constantly covered in a thin layer of dirt and stickiness from playing hard.  I bust out my dance moves every time I hear music, whether I'm in public or not.  I get time-outs when I test my limits, and like to do everything all by myself.  I'm such a two year old!

 

But, Down Syndrome does make me a little different from you, too.  Sometimes, it takes me a little longer to learn how to do things that you can do pretty easily.  It took me five whole months after my first steps just to be strong enough to walk all the time!  Holding my fingers up to show the numbers 1-5 is a little hard for me right now, and writing letters and numbers on paper is going to make my hands tired because it's a lot of work!  But, just because it takes me longer to learn some things, I WILL learn to do everything that you can do...it just might be a few months after you learn. 

 

Talking is going to be a little more difficult for me, as well.  Even though I can talk, you may not always be able to understand what I'm saying while I'm still learning.  Because of this, you might see me using sign language to get my point across.  Sign language is pretty cool, and I'm happy to teach you how to talk with your hands, too!  And when I do learn to talk with my voice, it might sound a little different.  I work really hard to speak sometimes, so I appreciate you listening to what I have to say.  Even though I might have a hard time expressing my ideas, I do have a lot to say, and a lot of really great thoughts that are worth hearing. 

Even though some things are more difficult, I am very bright.  I will be able to read, write, do math, and hold a job, just like anyone else my age.  I am very independent, and a great problem solver.  I learn new skills like reading, puzzles, colors, and shapes really quickly, because I am an exceptional visual learner.  So don't let the stereotypes fool you.  I actually have a great future ahead of me, and hope to even go to college someday.

I want to be liked and accepted just as much as you do.  Give me a chance.  I do notice when people are mean, or look at me with pity.  Don't.  My feelings are just as real as yours, and I understand how the world works.  Invite me to join activities; ask my opinion; talk to me about my day.  Treat me like you would treat any other person my age, and most of all, respect me.  I deserve it.

     

Life With Ty #4 - A Defining Moment

A Defining Moment

As a part of the 31 for 21 blog challenge, once a week some writers choose to write about a common topic.  These are some of my favorites to write and read, because it forces me to really think about my opinion on a specific topic that is important in the Down Syndrome community, but it also gives me the chance to read and learn others' opinions on the same topic.  It kind of broadens my perspective to see the varying viewpoints and values that all ultimately believe in the same goal. 

So this week, the common topic is "A Defining Moment"; a moment in my life with Down Syndrome that has changed my perspective in some way.  The interesting thing about this topic is that there are hundreds of moments just like that.  See, as time goes by, a person's perspective of Down Syndrome does change.  You enter the journey not knowing much about Down Syndrome, with a lot of fears and questions.  Over time, as you get to know your child, those fears ease up a bit, and you realize you have a baby who in most ways really is "just a baby".  Eventually, you reach a point where you feel comfortable, even empowered by Down Syndrome.  You learn to advocate for your child and be proud of who he is in every way.  So to narrow down those moments along the journey to just one "defining" one is nearly impossible. 

My first, and probably most significant "defining moment" though, took place before Ty had even made his way into this world.  Many of you know about my turbulent pregnancy with Ty.  From 20 weeks on, my baby was diagnosed with numerous medical conditions, many of which were unfamiliar, dangerous, and downright scary.  It started with the diagnosis of a heart defect - a "hole" in his heart that we were told was moderately-sized, and would likely require surgery by the age of 6 months.  Next, Ty's size was diagnosed as being "small for gestational age", as he measured in just the 3rd percentile at 28 weeks.  This diagnosis, which landed me on bedrest, was soon followed by the discovery of "chylothorax", or fluid in the chest cavity that surrounded his right lung.  As if that weren't enough on a new parent's plate, the doctors also discovered that his brain ventricles were enlarged, which signaled fluid on the brain.  Coupled with his large head circumference, he was suspected to have Dandy Walker (a malformation of the brain, causing significant physical and cognitive impairment), as well as craniosynostosis, the premature fusing of the plates of the skull, requiring surgery to separate after birth. 

Despite the doctors' persistent asking, we declined having an amniocentesis to determine if Ty had a chromosomal abnormality.  The procedure, which involves inserting a needle through the abdomen into the uterus and amniotic sac, would have most certainly caused premature labor at that point in my pregnancy, and I refused to compromise my baby's health any further by adding "prematurity" to his list of medical conditions. 

My "defining moment" happened when I was 35 weeks pregnant.  Large, terrified, and emotionally drained, I went to the local children's hospital to meet with a neonatologist in the hospital's NICU.  I remember walking into the neonatology unit, alone because Eric had to work, trying to come to terms with the fact that my baby would likely be spending his first weeks or months there.  I sat down with the doctor in his personal office, door closed, ready to absorb the news he was about to give me. 

I was pretty emotionally numb at that point in my pregnancy.  I had heard devastating news week after week for months, and literally did not have anything else to give.  Sitting across the desk from the doctor, I felt like a child in the principal's office, not wanting to hear whatever it was he had to say.  I listened as he reviewed and analyzed all of Ty's medical conditions.  He rattled off the myriad of problems Ty would most certainly have at birth - little to no respiration, heart difficulties, feeding difficulties.  These were quickly followed by the numerous surgeries he would need to correct his defects - open heart surgery, a catheter in the chest, surgery on his skull to separate his plates.  He also told me Ty most likely had a chromosomal abnormality.  I distinctly remember asking, "like Down Syndrome?"  And his response, "Well yes, Down Syndrome is a chromosomal abnormality, but the baby's symptoms don't 'fit' with DS. It's most likely something else, though I can't speculate what because his symptoms are so unusual paired in this way."  I remember thinking, "great, another non-answer". 

Finally, exhausted, I just came out with the question that everyone was thinking, but no one was saying, "Is my baby going to die?"  It was the first time I had acknowledged the possibility out loud, and I wanted to run out of the room before I heard my answer.  His response, "No, nothing that we know about your baby leads us to believe that he will not make it."  And that moment - the point when I had reached my absolute lowest - was my "defining moment".  I had avoided asking, even thinking, about my son's possible tragic outcome, but it was exactly what I needed to know in order to come to terms with what we were facing.  It was like a massive weight was lifted from my shoulders.  At that moment, all of my energy and fight came back.  I realized that as long as I had my son in my life, it really didn't matter what diagnoses he brought into the world with him.  If I had my baby, I had someone to fight for.

This "defining moment" was what allowed me to accept his diagnosis of Down Syndrome so easily, really without batting an eye.  I had come face to face with the darkest of possibilities, so a tiny extra chromosome was nothing in comparison.  That was the moment when I decided to tackle whatever we were facing head-on, rather than feel sorry for us or our baby.  I don't think I've ever looked back!

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For most of you who know Ty, you know that ultimately, he was born completely healthy.  Except for small heart defects that corrected themselves, not one of Ty's prenatal diagnoses were present at birth.  He never visited that NICU that I had toured in the children's hospital, never had trouble breathing or eating, and never needed any surgeries.  He was our miracle baby, for sure! 

Happy World Down Syndrome Day!

Down Syndrome Is...

*Fun*

*Silly*

 *Adventurous*

 *Athletic*

 *Helpful*

*Smiles*

 *...And sometimes frowns*

 *Creative*

 *Brave*

 *Rewarding*

 *Proud*

*Small moments*

 *Fiesty*

 *Messy*

*Love*

 *Good friendships*

 *Family-centered*

*Exciting*

*Smart*

 *Independence*

 *Down Syndrome Is Beautiful*

Today, 3/21, is World Down Syndrome Day.  The day was chosen to symbolize the three copies of the 21st chromosome that make our children so special.  With the hopes of bringing people together and raising awareness about the capabilities of the millions of individuals with Down syndrome across the globe, this day was established. 

But after the pictures, and blog entries, and you tube videos, and facebook posts have slowed down, please don't forget the heart of the cause.  Opportunities for people with Down syndrome today are endless.  Teenagers with Down syndrome are attending proms and getting drivers' licenses; it is not unusual for a person to graduate with a college degree and hold a job; independent living, marriage, and long, fulfilling futures are not out of the question.  I have these expectations for my son, and fully anticipate that I will not only attend his high school graduation, but his college graduation as well, and will dance with him at his wedding one day.  Down syndrome has come a long way, and has a completely different definition than it did 30, 20, or even 10 years ago; it is up to us to ensure that these possibilities continue to grow, not just today, but every day throughout the year.  The future is bright for our children!

So happy 3/21 to my Ty-guy, and all of his little friends near and far who make me smile on a daily basis!!!

A Year In Review

All in all, 2011 turned out to be a pretty decent year, I think!  Looking back to where we were one year ago today, it amazes me at how much has changed in our lives.  Ty has gone from an infant to a full-blown toddler, and has gained an incredible amount of independence.  We have met many new people through our Down syndrome playgroups, and Ty has made some great new friends.  I have given up the hectic life of a full-time teacher, to be a stay-at-home mom to the student who needs and appreciates me the most!  We are in a very different place now than we were 12 months ago, but it's all for the better.  Looking back...   

January 2011 - At the start of the year, Ty was just 10 months old.  He was just learning to feed himself crackers...

....stand to play

                                                          

 ...hold his own bottle

 ...and give those ever-so-sweet kisses of his!

February 2011 - This was the month of that stubborn first tooth...

...when he discovered the joy of clapping

 ...and his first DS playgroup - Morning Travelers!

March 2011 - Our little guy turned 1!!!  We played hookey to take him to the aquarium, and had a party with all of his family. This was my favorite day of the year!

April 2011 - This is when Ty discovered true mobility in his walker and realized he could get into everything!  He also started to really crawl sometime this month, though I can't even remember when anymore!

 He also celebrated his first Easter. 

This is still one of my all-time favorite pictures...dressed up, attitude and all!

 And as the weather started to warm up, we were able to explore the orchards, trails, and ponds near our house.  We had many many more days like this one!

May 2011 - The month of May brought Ty to his first parade (which he LOVED!)...

 ...and was when Ty developed his love...no, obsession...for swimming!

June 2011 - June was a fun one.  We participated in the NSTAR walk for Children's Hospital Boston, and walked 7 miles around the Charles River (in the cold and rain!) for Team Down Syndrome!

 Ty also finally...FINALLY...started to get on his hands and knees by himself, after months of army crawling!

 And he learned to spoon-feed himself!

July 2011 - July was a busy one as we celebrated the 4th (and our 3rd wedding anniversary!)...

 ...Ty got his second set of ear tubes, and built a nice 20 word vocabulary within a month!

... We celebrated Ty's baptism at the church where Eric and I were married.

 ...And Ty had his first visit to the beach, which he LOVED!

We discovered he is NOT afraid of freezing New England ocean water!

August 2011 - August brought Ty's first mini-vacation to Lake Winnisquam...

 ...And was the month when he learned to really stand well by himself.

September 2011 - The start of fall brought about probably the biggest change of the year, as I started my new "career" as a stay-at-home mom, rather than returning to work as a teacher. I don't regret a minute of it!

Ty also attended his first football game, and discovered his love for sporting events!

October 2011 - This month brought along Ty's first steps...a moment we had been waiting for!  Though he's not walking independently all the time yet, it was a good start!

 Our little puppy also celebrated Halloween!

November 2011 - November brought Ty's second Thanksgiving.  He looked oh-so-handsome in his little outfit.  This is one of the first pictures where I can really see how old he's getting!

December 2011-  This past month was filled with Christmas preparations, which Ty took part in this year.  He thoroughly enjoyed "shopping" for ornaments, as he walked by the Christmas tree...

 ...and of course his infamous visit with Santa (neither of them look thrilled!)

Whether it was a new skill, new experience, or exciting event, our year was definitely filled with excitement and celebration.  I have a feeling 2012 will be even better :-)

Wishing you a very Happy New Year, and a 2012 of health and happiness!