Thursday, October 31, 2013

Down Syndrome Awareness Month Conclusion

Today marks the end of Down Syndrome awareness month and another year of blogging for 31 days straight.  I find that it has become harder for me to continuously blog for Down Syndrome awareness because life is so normal for us.  However, that is exactly why I want to blog and take on this challenge every October because I want to show that Colin lives a very typical and fulfilling life.  I hope that on any given day, someone may stumble upon my blog and see the things that Colin can do, does do, tries to do, works hard to do and wants to do every day.  He is a bright, special, loving, amazing little boy and has changed many lives simply by being here.  

As Down Syndrome awareness month started to come to a close this year, my mind started to race with ideas that I could do to represent what a special and valuable life Colin has.  Raising awareness is important to me because I want to erase stereotypes and show that Colin's life is actually very typical.  

I started reaching out to some people who spend a lot of time with Colin for "quotes" about him that I could use in my final video.  I talked to family and friends but also spoke with Colin's support team at school for help. While we all push and challenge Colin, they have a very special job of building important skills for the rest of his education all the while loving him too.  Colin has a community of people that believe in him and push him to accomplish everything that anyone else can do.  

I share our family with anyone that opens our blog because I want to show that Down Syndrome is not scary.  There are challenges and difficult times but that's the same with all of life.  What I am sharing with you today is what people think about ONE life, ONE little boy with Down Syndrome who is more loved and valued than I could ever put into words.  

Colin HAS Down Syndrome but his life is important to all of those who know him.  

Daddy said: 
The day Colin was born was arguably the proudest day of my life, yet it was somewhat overshadowed by the possibility of a diagnosis. On the day the diagnosis of Down syndrome was confirmed so many questions, concerns and doubts raced through my mind and they all felt like they shattered my heart, my hopes for Colin and all of our dreams. Ever since that day, Colin has shown me the true meaning of love and what a real bond is. We share accomplishments, struggles, dreams, hopes, love, hugs, kisses and we celebrate together.Colin, if i could gather up all the smiles, laughs, memories and pride that you have brought me through the years and give them back to you, i would. You make me a better person and i couldn't be prouder to be your Daddy. 

Aunt Kimmy said:
Colin is a strong, loving boy who never gives up on anything and has forever changed many lives just by being Colin.

Granddad said:
He is God’s perfection. Colin has shown everyone that anything is possible, and he is my hero.

Nana said:
Colin has always had the ability to make me smile even when I'm having a bad day!  Love, nana

Uncle Pat said:
Colin has brought a wide variety of people together!  I'm proud to have a nephew with Down syndrome! I'm proud to now be able to help such an important organization (Special Olympics)! I love Colin's confidence in everything he does!

Uncle Brian and Aunt Maureen:
"When Colin finished running at the Special Olympics, he said, 'I did it Daddy.'  You sure did kid. You sure did."

Miss Shannon (Colin's speech therapist):
Sometimes I take for granted how special my job really is and certain students along the way remind me how lucky I am to be a speech therapist, and Colin is one of those children.  In working with Colin we have challenged each other, I challenge him to use more words and he challenges me to find ways to keep him engaged and motivated.  I have seen Colin’s language grow so much since he started coming to our preschool at age 3.  He has gone from throwing the toys/materials that he didn’t like onto the floor to telling me “I don’t like that” or “No”.  It is an honor, a privilege and a pleasure to be part of the team that works with Colin and it is awesome to see all of the gains that he has made, from walking independently to answering questions to greeting his friends when we go into the classroom.  I can only hope that I have made a difference in Colin’s life by helping him gain the language that he needs to communicate because he has made a difference in my life by being such a special little boy.

Miss Liz (Colin's classroom teacher): 
I have had the privilege of facilitating Colin's journey with learning and discovery in his Preschool classroom for over a year.  Colin is a sweetheart who comes to school greeting everyone from his bus drivers, peers and teachers with smiles and hugs.  He loves to sing and dance and he really enjoys being the "star of the show" and getting a round of applause.  There are times when learning new skills can be difficult for Colin, but he displays such character when he works hard.  And it is clear how proud he is when he knows he has learned something new.   Not only is Colin making friends and learning in class, he is also teaching us valuable lessons.  Such as how to take time to enjoy the moment, how important it is to have a strong family team supporting you and if you can believe in yourself you can do it no matter what!

Miss Sue H. (Colin's physical Therapist):
Colin doesn't necessarily follow every stereotype that you would think of when you imagine the diagnosis of Down syndrome.  Is he stubborn? YES! So am I.  Does he have preferences for certain activities?  YES! So do I.  Every day Colin learns something new and owns this skill.  He loves when I video his successes and show the video to his parents, teachers, and friends.  Colin is a good friend and loves supporting his friends' successes too.  "High Five" parties are celebrated frequently.  No matter what happened during our time together, every session is ended with "Bye Sue see you tomorrow, Love you!" "Bye Colin see you tomorrow, love you too!"

Miss Sue F. (Colin's Occupational therapist): 
Reflecting on my last 1 1/2 years working with Colin as an OT in the Brick Township Schools, I would have to start off with my favorite Colin sayings..." Oooookaaaaayyyy and no no no no." He came in toddling and as I watched him last week during a puppet show sitting on the floor with a straight posture, I realized how far he has come. Colin, I am proud of you and know you will power through any hurdles you have in your future. 

Jorie and Zach: 
"Colin has an amazing ability to put smiles on the faces of those fortunate enough to be around him, he lifts my spirit every time we see him."

Colin has changed my life.  I see the world differently because of him.  He’s made me stop and really see people for who they are regardless of their differences.  He has helped me become a more patient and accepting teacher.  I’m so lucky his parents let me spend so much time with him!

Colin is my favorite junior lifeguard! life was forever changed the day you came into it.  You have taught me a patience I never had before.  You have shown me that it is not how fast you get somewhere, it's all about what you make of the journey getting there.  I was so scared the day you born but you alone have shown me that there is nothing to be afraid of.  I love you with all my heart....thank you for showing all of us that YOU are one special and amazing little boy who just happens to have Down Syndrome.  Love, Your Mommy

Wednesday, October 30, 2013

31 for 21: Sneak Preview (30)

Here's just a quick sneak preview for tomorrow...

Plus, I have a BIG post in the works for tomorrow! Check back then!

Tuesday, October 29, 2013

31 for 21: Feeding Therapy Progress! (29)

I am so proud to report that Colin made super progress today at feeding therapy!  We have been seeing lots of little progress with Colin along the way but today was REALLY big!  We have slowly been adding different types of pasta noodles with red sauce in to some of Colin's meals in replace of the cottage cheese. While it took some transition time to get him to eat the noodles at school, he is finally eating them when he has it and occasionally we will also give it to him for dinner as well.  Pizza is still a meal he will eat when we have it so we've been able to rotate a few different things here and there.

Today at feeding therapy with miss Josie Colin ate CHICKEN pieces (Perdue short cuts chicken breast), FRUIT SNACKS, and cheese!!  Not only did he eat these food items, he ate ALL that I had sent in (5-6 pieces of chicken, a PACKAGE of fruit snacks, AND a whole string cheese!! Woo hoo!  We love Miss Josie and we love Colin even more.  We are so proud!  Colin has come SO FAR!

Monday, October 28, 2013

31 for 21: Hematologist (28)

Back in August, Colin had blood work done with the intention to check his CBC (checks blood cell counts), his thyroid levels, and to check for celiac disease (which we were pretty confident he didn't have). We get blood work done somewhat regularly just to make sure his levels are normal because of the fact that kids with Down Syndrome may have a higher incidence of leukemia.  What we found at that time was that Colin was really anemic (his hemoglobin levels at that time were 60% of what they should have been) and so he was started on an iron supplement right away.  

When the levels were repeated several weeks later, his hemoglobin levels had started to rise but some of the hemoglobin indices (other measures of iron in the blood) were still low (although we do know that those can take a longer amount of time to come back to normal).  Our pediatrician has been consulting with a hematologist over these numbers and has been assuring us that things were looking Ok.  However, I received a call from the office the other day telling us that we needed to make an appointment to see the hematologist to follow up about the blood work with her.  Before I could even reach the office, the hematologist's office called me to schedule the appointment (that in itself is alarming as it's hard to get specialist appointments!).  

So, Colin and I took a trip to the doctor this morning and found that we really don't have any more answers than we did before.  While she was happy with his hemaglobin levels, his white blood cell count was a little low (although he could have been fighting a cold/virus/etc. at the time) and some of the other counts were still on the low side.  While she wasn't concerned (and said that I shouldn't be either) she is also sending us for more extensive blood work to be done in 2 weeks.  During the  next two weeks, we need to stop giving him the iron supplement so that his numbers can baseline for him and then she is also going to be gathering his original bloodwork from when he was born (apparently, they check for anemia levels as a newborn so she can compare his results to that).  

For the time being, we just have to take the "wait and see" approach and then I guess we will discuss what else could be going on.  He was really good during the exam but I don't think there is much to check for physically.  Most of his coloring has improved from over the summer when he was more on the pale side (although my children really can't get more pale than they already are) and the dark circles under his eyes has been improving.  I also discussed with her what the dentist said a few weeks back that the iron is what is causing the discoloration of teeth (in addition with some staining that's happening "just because").  Hopefully we get everything straightened out soon!

Sunday, October 27, 2013

31 for 21: Favorites (27)

I'm going to keep this post very simple tonight. This is one of my most favorite pictures of Colin...

Saturday, October 26, 2013

31 for 21: Just for fun (26)

Just for fun tonight we did a little photo reenactment on the fly.  We didn't exactly have all of the same props but it was fun nonetheless!

My little boy then...

and now...

Colin and I then...

and now...

Colin with his Daddy then...

and the two of them today...

Friday, October 25, 2013

31 for 21: School and IEPs (25)

When we sent Colin to school for the first time after aging out of Early Intervention, we were all really excited.  It was time for Colin to start his next educational chapter as we were finding that it was hard to keep him on task in our own home when the therapists would come.  He had already been exposed to the school setting because he had been going to daycare since he was 5 months old and always had a very regular schedule when it came to school.  

Our initial planning meeting and IEP setup with the school district had gone really well despite how nervous we were.  That first meeting was really hard for us because we were not sure what to expect and because despite any research we had done, we still felt as though we didn't really know what we needed.  As it always was, it was also difficult to hear the things that Colin wasn't doing yet or how he tested in different areas.  At that time, Colin wasn't even walking yet so that was a big stressor for us as well thinking of possibilities for what we might need to do if he still wasn't by the time he turned 3 and headed to school.  The recommended placement was what we wanted for Colin so that made us happy with where we were all headed.  

Colin has now started his second full year in a pre-K self contained classroom with the same teacher and support staff (physical therapist, speech therapist, occupational therapist, etc.) that he started with at the age of 3 (aside from a minor change in paraprofessionals).  We have really seen growth since he started on that first day with his behavior (although we have seen growth, we have also seen some changes in behaviors as well), social skill development, self help skills, speech/communication, gross and fine motor skills and academics (letter, shape, and color recognition, counting, etc.).  While some areas have had more growth than others, we know that we need to focus on any progress even if they are small changes.  

In communicating with his group, we find that he has days of "skoochie" behaviors (not following directions well) but then lots of good days as well (I try to remind myself some days that he IS still a toddler).  He definitely has his preferences of tasks and that is often indicative of what kinds of behaviors we might see. We always know the things that he is working on at school which is helpful for follow through at home. While we obviously focus on the academic tasks, we are also trying to work on other areas as well.  I have observed through our social interactions with friends with children that Colin does have some difficulties initiating play with friends or following through if someone else initiates.  This is something that is encouraged at school along with focusing on other behaviors as well.  

We feel exceptionally lucky to not only have started out with a great team while Colin was in Early Intervention, but now to have continued down this road with a group that Colin feels comfortable with and who are pushing and challenging him to work towards accomplishing various skills.  We have open communication and feel that we are all working together so that Colin will be ready for Kindergarten in less than a year! (GASP)

I have lots of fear and anxiety when I think about that next step in IEP planning and placement for kindergarten, but I also feel that it is because we will be starting a new chapter of the unknown.  When Colin was born, we were fearful of EVERYTHING that lied ahead for us but as we get to each new step in our journey together with Colin we realize that it's not as scary as we were anticipating.  There are big things ahead for our little boy!

Thursday, October 24, 2013

31 for 21: Potty Diaries {The Update} (24)

Back in August, I decided to take on the big task of trying to potty train both of my toddlers at the same time.  We have been working on potty training Colin since he turned 3, but it has been a long road because for that whole first year, I believe that he wasn't ready.  I think it was important for us to talk about it, introduce him, and continue to try for that length of time, however, he demonstrated it wasn't the time nor was he able to communicate his needs for this.  

To be quite blunt, it has been THE hardest thing I have attempted as a parent.  I blogged about my potty training boot camp back in August in detail so I'm just going to give an overview of our time so far.  I think it was the best decision for the time period, and I have learned a lot, but it has been a really difficult time working with both kids.  

By the end of August, I had both kids in underwear most of the time and Kailey was doing better than Colin. She would initiate use on the potty, tell us when she had to go, and even though she had a fear of pooping on the potty, she would at least tell us when she went.  Colin wasn't communicating 100% of the time but he was doing pretty well.  We reminded both of them all day long and that helped with the communication.  

Two months later, Kailey has completely backtracked.  She was having so many accidents at school, they asked us if we would be ok with putting her back in a pullup 100% of the time because they were losing so much time changing her so often.  They were taking her regularly, talking about it, and then she'd go just sitting there at circle time.  Even when we don't force her, she doesn't want to use the potty and screams and cried if we even mention it.  Although it goes against what I previously thought, I have decided not to push and just keep talking about it or putting her on when she is willing.  I'm not sure if it has something to do with the fact she may be getting teeth (and therefore is having some issues with pooping) or if it's just a complete behavioral thing.  Regardless, I am so frustrated and not sure what to do with her.  

Colin is a pretty scheduled bathroom user now.  There are days he stays dry all day long and other days where he has an occasional accident.  His potty book shows that he is starting to communicate it one in awhile and does pretty well.  Most of his accidents are poop related.  He has the words, he knows where it's supposed to go, and he is even peeing standing up but I think some of the connections are not quite there yet for him to be 100% successful.  Looking back now, he has made a lot of progress but we still have a ways to go.   

I know that one day we will look back and both kids will be trained and dry in underwear but it's really hard waiting to get there!  

Wednesday, October 23, 2013

31 for 21: Friends (23)

"Some people come into our lives and quickly go.  Others stay for awhile and leave footprints on our hearts.  And we are never, ever the same."

Tuesday, October 22, 2013

31 for 21: End the Word (22)

I have commonly heard the phrases "I don't mean it that way", "I'm not trying to be mean", and others when I have spoken up in response to someone using the word retarded.  However, using that word IS mean and hurtful and disrespectful to all of those with developmental disabilities.  

It's not acceptable to use the word retarded or variations of the word.  Please spread the word to family members, friends, and even strangers who may use it, that IT IS NOT OK...

My little boy deserves more than to be disrespected by the use of the word retarded.

Monday, October 21, 2013

31 for 21: Down Syndrome (21)

I have found as the years go by, that keeping up with the 31 for 21 challenge has become a little more difficult because there isn't as much to talk about for us when it comes to Down Syndrome.  That's not to say that there ISN'T anything because every day brings something new, but our life feels much like it would for any other family without kids with special needs.  In fact, I was just saying tonight at the dinner table as Kailey refused to eat parts of her dinner, whined and cried every so often and then had a full on tantrum when we gave up her ice cream to Colin that she no longer wanted that in some ways, Colin is much easier than our typical child.  We have a pretty normal routine on a daily basis that involves school and work, plus we have to fit in time for household chores and other obligations.  I would be lying if I said that Down Syndrome doesn't cross my mind on a daily basis because it does, but not in the ways you might think. 

When Colin was born, WE were born into a new community of supportive parents and family members that was more than we could have ever anticipated.  We have "met" (both in person and through the computer) people, many of which we call friends.  Because of this, I get to see the accomplishments of Colin's peers  on skills that they have been working really hard on, we celebrate the successes and empathize with the challenges, and we are inspired all of the time by some truly amazing stories about people with Down Syndrome.  This community has also been extremely helpful because I have learned different ways of doing things, gotten recommendations and suggestions and have also learned ways of coping for things that have been a bit more difficult at the time.  

We face challenges that are unique to Colin BECAUSE of him having Down Syndrome, but we don't make excuses for that either.  We believe that he can do anything his typical peers can do so we push him to keep working and keep trying so that he can be successful.  

I can honestly tell you without a doubt that if I could go back and change anything about my life with Colin I wouldn't.  Chris and I were chosen to be Colin's parents for a very special reason.  I can remember my first few days on this journey (when I cried harder than I have ever cried in my life) thinking and trying to understand why it had to be Chris and I to be chosen to be parents for a child with special needs.  Four and a half years later, I am so grateful that Colin is a part of all of our lives.  He is one very special little boy and we are blessed to be his parents.    

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14

Sunday, October 20, 2013

31 for 21: Grateful for Friends (20)

While stopping to see Daddy at work today, we had the added bonus of seeing our friend Becker whose Daddy also works there.  While I was thinking about where I wanted to go with my 31 for 21 post today, my mind started to wander when thinking about the 3 of them playing together today.  We've been extremely lucky in life to have been blessed with some pretty special friends.  When Colin was born and we were dealing with his diagnosis, every single one of them stepped up in support of us and loved Colin unconditionally.  Not one of our friends even faltered in their step alongside of us from day one.  

Since that day, many of our friends have been having children of their own and raising them with the same kind of unconditional love.  Watching our kids play with our friends kids is pretty awesome because there are no boundaries...just fun and love!

If only adults could see life the same way!

Saturday, October 19, 2013

Friday, October 18, 2013

31 for 21: Friends (18)

"Don't walk behind me; I may not lead.  Don't walk in front of me; I may not follow.  Just walk beside me and be my friend."

Thursday, October 17, 2013

31 for 21: Little Sister (17)

Little sister has got sass...

She's got personality...

And she is DEFINITELY her own person.  

She brings a lot of different challenges to the table that we definitely have not faced with Colin.  With raising Kailey, it has sometimes felt like we are new parents all over again because she has brought so many new and different things with her that we haven't faced before.  

But isn't that what makes life fun?  

Wednesday, October 16, 2013

31 for 21: Family (16)

When I started this blog, my original intent (and I am kind of embarrassed to admit this) was going to be a place that I was going to use to "vent" about the diagnosis we had just received.  I signed up to start blogging about a month after Colin was born but when I actually started writing, I already started to feel like I wanted to share what things were like for us (instead of feeling like I needed to vent about it) and all of the great things Colin was already doing.  By that time, we had already settled into our new life of having a newborn and while we will still fearful of what the future would bring, Colin was already showing us his way.  We were starting to figure things out and we were excited about the things Colin was starting to do from little smiles, to giggles and laughs to all of the big things he was working on as well. 

As time went by, the blog sort of evolved into a place where we would highlight the things that Colin was doing on a daily basis.  At times, I blogged my frustrations or concerns and even bigger fears and found comfort in the comments that I would receive from my friends in the blog world.  Four and a half years later, I can look back and see how the blog has evolved even more.  While I still like to share the unique challenges and accomplishments that we see because of Colin and his diagnosis every day, the blog is now a place to include ALL of life for our family.  Both of our children have changed Chris and I in many ways and BOTH of them bring unique challenges in the way we raise them.  While we do have a child with a disability, for Chris and I, it just feels like our normal.  We raise both of our kids the same way and expect them to follow the same rules and routines around the house.  We are a family and all bring something different to the table.  

I have gotten asked a lot how I find time to keep the blog going on a regular basis and my answer always is that I just fit it in as though it's just as important as other things.  For me, it feels good to share all of the things that we go through together as a family regardless of whether or not it's related to Colin having Down Syndrome.  I hope that one day when someone is facing a new diagnosis themselves, they will stumble across my blog (much like I found some of the ones in the beginning that I still like to follow today) and see that Down Syndrome isn't so scary.  I want them to see that we are in fact, a very typical family that likes to do fun stuff together when we can, who are really happy, and who, despite the fact have a child with Down Syndrome, don't treat him any differently than anyone else.  I hope that through this blog they realize that he goes to school and has friends and plays with his sister and learns ABCs and counts and sings and dances and laughs and smiles and is the most wonderful child you will ever meet. I hope through this blog they see Down Syndrome has its challenges but so does every thing in life....

..."Being a family means you are a part of something really wonderful.  It means you will love and be loved for the rest of your life.  No matter what."  

Tuesday, October 15, 2013

31 for 21: Pledge of Allegiance (15)

I have a bigger post in the works in my mind that I would like to do this month regarding Colin's progress in communication but in trying to get Colin talking on camera tonight, I ended up with something I wanted to share now instead of waiting.

I was talking to Colin and trying to get him to do our normal routine of talking about what the night and morning would bring and who he would see when he went to school tomorrow.  He ended up saying the pledge of allegiance for me instead and it cracks me up...

Monday, October 14, 2013

31 for 21: Feeding Therapy (14)

One of the challenges we have faced with Colin from the very beginning has been feeding issues.  As a newborn, he had a difficult time drinking from a bottle because of the low muscle tone in his mouth.  We spent a lot of time counting every last cc of formula that he was drinking.  Surprisingly, he had a very quick and easy transition to cereal and purees but the real trouble came when we started to introduce table food and in trying baby food with soft solids in them (stage 3s).  Since then, we have been on a journey that has been a roller coaster ride.  There were times early on that we could get him to eat pastina with pureed vegetables in it and pancakes but those disappeared for a long time.  The most lasting food item that we have been able to get him to eat has been cottage cheese with berries in it for, wait for it, breakfast, lunch, AND dinner.  For WELL over a year, Colin's main source of nourishment has been cottage cheese for all three meals with sides of yogurt (specifically yokids), pudding and vanilla ice cream.  

We had tried out a feeding therapy group in North Jersey that did not go so well for us because the approach was much more forceful.  We only saw tiny progress for the length of time that we were there so we had decided to pull out.  We finally decided to start back up again a little less than a year ago when we started seeing a gastroenterologist who ruled out some more serious gastro issues or allergies.  We are seeing a therapist whose approach is the complete opposite of forceful.  She will push Colin but not force him.  In the past year we have seen a lot of baby steps that now, in looking back, we realize we have come so far.  

While Colin still eats cottage cheese for the majority of his meals, he is more open to trying different things that we are eating.  He has been eating pizza when we do and most recently, will eat several different kinds of noodles with red or white sauce.  

Tonight was spaghetti night for dinner.  While there was some protests to start eating it, he gave in when he realized we were all eating it.  

We have really come a long way with Colin's eating.  His feeding therapist wanted us to send noodles to school with him which I dragged my feet in doing and even though it took a week, he ate it for lunch at school no problem on Friday.  Hopefully with time, we will be able to add some other food choices to his rotation.  Tonight was a fun night at dinner!

Sunday, October 13, 2013

31 for 21: Gross Motor Skills (13)

Up until the time Colin walked, his gross motor development has always been delayed.  However, one thing his old physical therapist used to say to us was that in the time he was learning the skills, he always learned to do them the correct way.  For example, it took Colin a long time to learn how to sit independently, but when he did, he had such great posture in doing so.  He sat up so straight and never slouched over once he learned.  He has been receiving physical therapy services now since he was just over 1 month old and throughout all of these years, he has had a bit of a stubborn streak when it came to the really challenging tasks that were physically demanding.  Even recently, his PT at school reached out to us because he was not always compliant when it came to the hard tasks.  We suggested using some motivators that short video clips or pictures which has been working.  We have found lately that now that he has been becoming increasingly independent, even if it is a challenging task, he will want to try (with help if needed) to do whatever task it is (especially if it's what everyone else is doing).  

Today at our friend's house, he really wanted to go down the slide but to do so, he needed to climb the "rock wall" in order to get to the top.  He had been working on it the last time we were there, but today we caught him trying until he got up all by himself.  

We were so proud of him that he was able to do this task independently, especially because it requires a lot of strength from different parts of his body to successfully do it.  

In post-learning how to walk years, we have seen him fly through different skills with more ease.  He has now learned how to run pretty quickly and enjoys to do so (when we go to the Special Olympics Young Athlete program he would much rather run around as though he were racing than do other activities).  He is also really into jumping lately and is gaining more confidence jumping from different heights (which makes us a bit more nervous).  We are so proud of his new found independence, especially when it comes to trying new things and trying them until he is able to successfully complete the task.  

Today he put on Daddy's shoes to "go running and get wet (sweaty)".  He was even trying to get out the door to go just like we do.  

...and just for fun, my little pumpkins in the pumpkin patch today.  Good times with great friends (but more to come on that later!).

Saturday, October 12, 2013

31 for 21: Cheerleader (12)

Because things have always been more challenging for Colin, we have always cheered him on for every skill he has accomplished.  Things that may be otherwise insignificant for others, is often worthy of a lot of cheering and praise for Colin.  Naturally, we resumed this practice with Kailey.  Life is much more fun anyway when EVERYTHING is deserving of praise and cheers.  

Kailey has become one of Colin's biggest cheerleaders.  We often catch comments like "good job Colin" or "you did it Colin!" and tonight it was "great picture Colin!".  On top of that, they have both become extra affectionate to go along with these comments.  They are often giving each other hugs and high fives for accomplishing or doing different tasks.  

I look forward to seeing how this affectionate relationship evolves through bigger life events! I know they will always be each other's biggest supporters!

Friday, October 11, 2013

Thursday, October 10, 2013

31 for 21: Patience (10)

I will admit that patience has not always been my virtue.  I feel as though through much of life I have been in a rush to make sure that I am not late, I get done what I am supposed to, and I fit in everything that is needed.  Chris laughs at me almost daily because I am the first one done with dinner and if you saw me walk anywhere, I am always walking briskly.  Despite my lack of patience for time, I seem to have it in other areas.  However, when Colin was born, I was forced to find patience in me that I never really had for a lot of things.  

Because of some of the challenges that kids with Down Syndrome face, they often don't fit the same "guidelines" for development that *most* children fall in.  When it came to holding his head up, sitting, crawling, standing, walking, talking, potty training, eating, and even smiling, Colin seemed to have his own timelines.  At first when we started comparing (which you should never really do despite it being a natural habit) Colin to other kids, it would feel overwhelming because he was always just behind his typical peers.  Even now, a lot of those differences stand out.  

However, one thing we have learned on this journey with Colin is that you must have patience and you must let go of timelines that people that fit the "regular" mold fall into.  While it has been difficult waiting for Colin to acquire certain skills (and mostly because we have always felt skills like walking and talking would benefit Colin to accomplish), once he does, the reward is so worth the wait.  

If there was ONE piece of advice I could give to anyone facing a new diagnosis it would be to be patient.  While I know this is difficult when you are IN any situation (and looking back, I have certainly stressed and been impatient through different time periods of Colin's development) you just have to remember that they WILL do it.  But, just like anyone, we do things when we are ready.  

A little bit of patience and a LOT of love go a long way...

...And in the end, it will be so worth the wait, whatever it is.  (Now I just have to keep telling MYSELF that DAILY through potty training!)

Wednesday, October 9, 2013

31 for 21: Down Syndrome Stereotypes (9)

One of the most common stereotypes about people with Down Syndrome is that they are happy ALL of the time.  While I would generally say that Colin's overall demeanor is more relaxed and calm than Kailey's, I certainly wouldn't say that Colin is happy all of the time.  Just like other kids his age, he still gets mad when he doesn't get what he wants, he cries when he gets a "boo-boo", he loses his temper when Kailey doesn't do what he wants, and just because YOU want him to smile for a picture, doesn't mean he always wants to do that for you.  

Colin also has his boundaries when it comes to physical contact.  A lot of people have said to us that people with Down Syndrome are so loving and like to hug and kiss a lot.  While in some cases this can be true, for Colin, he has his limits to the kind of physical contact he is willing to give out and receive.  These days, Colin does not dole out hugs and kisses to just anyone and even if you ask him to, he doesn't always oblige.  It surprises us at times because we will find that he is ready and willing to hug a random stranger in the grocery store, but then doesn't want to hug family members good-bye when they are leaving our house.  I find a lot of times at school when I pick him up that a lot of kids want to hug him good-bye (particularly the girls) and if it gets to be too much, he is no longer interested in giving hugs back.  This typically has to be on his own terms and when he is ready.  While there are times we want him to hug certain people, we are also trying to teach him appropriate hellos and good-byes.  For example, we have been trying to teach him to give handshakes when he is trying to say hi instead of always expecting him to give a hug.  This is not always appropriate behavior in society so we think it's important to show him that now.  

However, we have found that he is getting pretty comfortable with Kailey in the sense of their "closeness".  We often find them in a lot of positions like in the picture above which has improved a lot from his tolerance of this before.  I think this is improving partly because of his increased communication and in being able to tell her what he does and does not want (she can often be a bossy pants).  I also think this is becoming the case more because of their growing friendship.

While Colin's personality has always been more easy going and laid back than other kids, he still is a very typical toddler.  He decides when he wants to do things, including showing affection and how he wants to do it.  This does not mean that he will just hug and kiss anyone and everyone (nor would we want him to!).  

Despite the fact that these hugs and kisses are on his terms, he DOES give out some pretty awesome ones. He has the power to make anyone feel loved! 

Tuesday, October 8, 2013

31 for 21: Change over Time (8)

Chris put this picture on instagram and facebook this morning with the caption that said "Hello world, here I come!".  In discussing what today's blog post should be about, we started talking about how people have been pointing out lately how much Colin has grown and changed more recently.  It's often hard to see those changes when you see someone every day, but if I really start to think about it, Colin's progress (and ours too) has come such a long way.

When I first started out blogging about our life with Colin and his diagnosis of Down Syndrome, it was so hard to look past the fear and the worry that we were facing about his future.  To be honest, it wasn't so hard when we were holding our baby in our arms, but if we started to look past that day we were living in, the fear started to creep back.  

It didn't take that long before Colin himself started to ease our worries because he started to show us what he was capable of.  When he was only a few weeks old, we were told most of his gross motor development would take much longer than his typical peers...and then he rolled over at 4 weeks old.  

While it was often hard to see the challenges that he was facing compared to his typical peers, we soon realized that he wasn't giving up and so we pushed him to do all of those things we knew he was capable of. 

He worked really hard and so when he started accomplishing some of those bigger challenges, we would cheer really loud because we knew how far he had come.  

Honestly speaking, there were times when it would feel like we were stuck in a phase for a long time and it felt as though we were never going to get to the end with certain skills.  I will never, ever forget how it felt when Colin finally started being able to stand up independently and start taking his first steps.  

For Colin's confidence and independence, walking was such a BIG accomplishment.  We sat at his very first IEP meeting and discussed with the team options we might need to help him move around school since he wasn't walking yet.  Once he stood up and took his steps, he never looked back.  He walked right into school on that first day a few months later completely on his own.  

Through each phase of development that we go through with Colin we can look back through pictures and video and see how far he has come.  It does not matter that Colin has Down Syndrome.  He CAN do anything he puts his mind to and we will always be here to push him.  We have high expectations for Colin both educationally and for his future.  

Hello world, here he comes!