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."

Mo:

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!

Mer: 

Colin is my favorite junior lifeguard!

Colin...my 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

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!

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!

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!

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...

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...

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!