Colin wanted to wish everyone a Happy Halloween!!!
Watch out for the Kangaroo!
Saturday, October 31, 2009
Lots to say
There are so many things I would like to talk about...so bear with me as I get through all of them please.
We noticed lately in response to our waving, Colin is starting to wave back to us! We have especially noticed it when Colin sees us for the 1st time in awhile (like when we get home from work). It's so much fun! This is the best picture we have of this right now...
Another skill that we are SO happy about is Colin's new ability to lift his legs up, grab onto his feet, and sometimes pull his socks off all by himself! Miss K had us working on Colin pulling his socks off as a self-help skill, but these days, he is starting to get that on his own! This picture is a little hard to see, but I took it with my phone and further away because Colin is very aware when we take pictures now...
Lots of great things going on these days!
1st - I apologize for not following through with the 31 for 21 challenge. I am incredibly disappointed in myself, but somewhere along the line this week, something had to give. I've been through a lot of things in my life, but this time period is THE most difficult thing I have ever done with student teaching full-time, working full-time and being a mommy and wife full-time. I'm not going to get into exact details, but the stress associated with all of that has been pretty hard to handle. Fortunately, I have one adorable little boy and a very supportive husband to help me get through all of this.
2nd - We had a little bit of a scare this week (and I'm sure there are lots more to come with being parents) because one of the children in Colin's class has swine flu. The student was in class earlier this week and coincidentally, Colin wasn't in school on Thursday because his Aunt Kimmy was spending time with him. We kept him home with his Gammy and Grandpa on Friday just so we could keep an eye on him and so far so good. I've been in touch with the pediatrician (who is wonderful) so we know what to look for, but Colin hasn't shown ANY symptoms and has been one happy little boy. After finding out about the student in the class, Aunt Kimmy sent us these pictures...I felt much better after seeing this!
This 1st 1 was after Aunt Kimmy and Colin's walk...
...and this one is after Colin woke up from his nap...
3rd - LOTS to update you on with all of the wonderful things Colin is doing! My heart has been swelling because the past week it feels like Colin is attempting and successfully completing new skills left and right!
He is really working hard on trying to hold the bottle himself! He is trying really hard to get something out of it, but hasn't quite connected lifting it up.
We noticed lately in response to our waving, Colin is starting to wave back to us! We have especially noticed it when Colin sees us for the 1st time in awhile (like when we get home from work). It's so much fun! This is the best picture we have of this right now...Another skill that we are SO happy about is Colin's new ability to lift his legs up, grab onto his feet, and sometimes pull his socks off all by himself! Miss K had us working on Colin pulling his socks off as a self-help skill, but these days, he is starting to get that on his own! This picture is a little hard to see, but I took it with my phone and further away because Colin is very aware when we take pictures now...
Lots of great things going on these days!
Sunday, October 25, 2009
31 for 21
Colin has had a great couple of weeks because he has seen so many family and friends! He has seen Nana and Grandad, Uncle Tim, Uncle Pat, Aunt Kimmy, Aunt Kristine, Gammy, Grandpa, Uncle Brian, Aunt Maureen, Aunt Beth, Uncle Jason, Jorie, Zach, Liam, and Kaia, Monica, Robin, and many more to come in the next few weeks! (Pictures to follow in the next few days!)
Colin is so lucky (as is his mommy and daddy) to have such wonderful family and friends!
Colin was so happy today! We were so proud because he is working on trying to get his bottle into his mouth all by himself! He knows he wants it and he knows to put the nipple in his mouth by himself, but he can't quite lift it yet to get the formula out of it. He's trying hard though! He was very talkative all weekend, very smiley, and worked really hard on his exercise ball trying to lift himself up! I tried working with him on just sitting, but he is so forceful in extension that he pushes himself right over!
We are so proud of all the things he keeps trying to accomplish! We had to work on an art project today and he was picking up individual pieces of pasta! I would definitely call that a reach and grab (Miss D was asking if he does that on a regular basis now)!
Colin is so lucky (as is his mommy and daddy) to have such wonderful family and friends!
Colin was so happy today! We were so proud because he is working on trying to get his bottle into his mouth all by himself! He knows he wants it and he knows to put the nipple in his mouth by himself, but he can't quite lift it yet to get the formula out of it. He's trying hard though! He was very talkative all weekend, very smiley, and worked really hard on his exercise ball trying to lift himself up! I tried working with him on just sitting, but he is so forceful in extension that he pushes himself right over!
We are so proud of all the things he keeps trying to accomplish! We had to work on an art project today and he was picking up individual pieces of pasta! I would definitely call that a reach and grab (Miss D was asking if he does that on a regular basis now)!
Saturday, October 24, 2009
Visiting with Friends!
Colin finally got to spend time with his friends Liam and Kaia today! We were so excited to be able to make our way up there! Jorie took care of me by making me a great dinner! We got Colin's FIRST Halloween costume today so the kids could take pictures together, but it didn't quite go as planned...
Here are all 3 kids after we got them dressed and prepared to take some pictures...
And then this is what happened when we tried to actually take a group picture...
We still had fun though! Colin enjoyed playing with his friends!!
Thursday, October 22, 2009
6 Month Update
This is the age that we are starting to have lots of follow up appointments with different people (physicians, audiologists, therapists, EI coordinator, etc.) so I'm going to start to sort through all of it for you.
The first of all of these visits was his 6 month follow up with Miss D, the developmental therapist, which I explained in a previous post.
Yesterday, Miss K came for her session and also performed her evaluation. The evaluation actually went quicker than I expected and a lot of it was questioning Chris and I to inform her of certain things Colin is either doing or not doing (most of things Miss K witnesses during her sessions). On the 2 different assessments, Colin falls in the 4-6 month range because he is doing all but 1 skill in the 4 month category (changing a toy from hand to hand), most in the 5 month category and is starting to touch on some 6 month skills. His biggest weakness is his trunk musculature and as a result, isn't quite sitting yet.
This morning, we took Colin to the audiologist to follow up with his hearing test (we needed to follow up after his initial screening test at birth which he passed). After her initial questioning, she asked us if Colin had some congestion (which he does and was obvious when he coughed) and then gave us this look and said that she probably wouldn't get good results. Then she looked inside of his ear (noted his small canals) and also said that he had a decent amount of wax buildup. She performed the test and told us that Colin failed. Surprisingly I wasn't that upset because I know that Colin can hear (he responds to his name when called (especially when we are out of site), he will respond to toys that make noise, he becomes startled by loud noises, etc. When we were at our pediatrician's office today, she kind of scoffed at the failure because as soon as she looked in his ear and saw the wax she thought it was obvious that he would fail. So, we have to go back and have his hearing re-tested.
So, we were at the pediatrician's for Colin's 6 month check-up and he is weighing in at a whopping 14 lbs. 2 ounces (without clothes on and after he peed all over the table) and 24" long. She felt that his cough is getting better and is related to irritation of his bronchial tubes and is not concerned because he does not have any other symptoms (#1 being a fever). We discussed some things we will need to follow up with in the future, he got his ears cleaned of wax, 2 vaccines, and lots of loving from his favorite doctor.
Coming up in a little over a week we also have Colin's 6 month IFSP meeting to determine the services he may need over the next 6 months. I am pushing for an increase in physical therapy, developmental therapy and also a possible addition of speech therapy (not sure if I'm going to get that one). Colin is doing well, and I want to make sure he stays on that track, especially now that he is starting to really babble and make sounds. I would like to learn ways to increase this babble.
We are really working hard!
The first of all of these visits was his 6 month follow up with Miss D, the developmental therapist, which I explained in a previous post.
Yesterday, Miss K came for her session and also performed her evaluation. The evaluation actually went quicker than I expected and a lot of it was questioning Chris and I to inform her of certain things Colin is either doing or not doing (most of things Miss K witnesses during her sessions). On the 2 different assessments, Colin falls in the 4-6 month range because he is doing all but 1 skill in the 4 month category (changing a toy from hand to hand), most in the 5 month category and is starting to touch on some 6 month skills. His biggest weakness is his trunk musculature and as a result, isn't quite sitting yet.
This morning, we took Colin to the audiologist to follow up with his hearing test (we needed to follow up after his initial screening test at birth which he passed). After her initial questioning, she asked us if Colin had some congestion (which he does and was obvious when he coughed) and then gave us this look and said that she probably wouldn't get good results. Then she looked inside of his ear (noted his small canals) and also said that he had a decent amount of wax buildup. She performed the test and told us that Colin failed. Surprisingly I wasn't that upset because I know that Colin can hear (he responds to his name when called (especially when we are out of site), he will respond to toys that make noise, he becomes startled by loud noises, etc. When we were at our pediatrician's office today, she kind of scoffed at the failure because as soon as she looked in his ear and saw the wax she thought it was obvious that he would fail. So, we have to go back and have his hearing re-tested.
So, we were at the pediatrician's for Colin's 6 month check-up and he is weighing in at a whopping 14 lbs. 2 ounces (without clothes on and after he peed all over the table) and 24" long. She felt that his cough is getting better and is related to irritation of his bronchial tubes and is not concerned because he does not have any other symptoms (#1 being a fever). We discussed some things we will need to follow up with in the future, he got his ears cleaned of wax, 2 vaccines, and lots of loving from his favorite doctor.
Coming up in a little over a week we also have Colin's 6 month IFSP meeting to determine the services he may need over the next 6 months. I am pushing for an increase in physical therapy, developmental therapy and also a possible addition of speech therapy (not sure if I'm going to get that one). Colin is doing well, and I want to make sure he stays on that track, especially now that he is starting to really babble and make sounds. I would like to learn ways to increase this babble.
We are really working hard!
Tuesday, October 20, 2009
Happy 6 Month Birthday Colin!
Colin is 6 months old today!
Happy Birthday Colin! Thanks for the best 6 months!
Monday, October 19, 2009
Thank You...
I just wanted to take a moment and say thank you to Chris. I've been on here a lot thanking friends and family for everything they have all done for us, for Colin, and for raising awareness...which has been wonderful (and we are STILL thankful).
...but Chris deserves a big thank you for all that he has done for our family. With things being very crazy right now for us because of my student teaching AND working, Chris has kept our boat afloat and Colin and I are so appreciative. He has become "Mr. Mom" taking care of our household chores, taking care of me, and most especially, being such a great daddy to Colin.
Colin and I love you! You have raised awareness by loving your baby unconditionally for who he is and that never once faltered, even after his initial diagnosis. I am so proud to be your wife and I know Colin is so proud to have such a very special daddy...
We love you! xoxoxoxoxox
Thank you!
Sunday, October 18, 2009
31 for 21
Despite all of the things that I stress about with Colin having Down Syndrome, these are the moments that make it all better...
I had one of those moments today where I panicked. I get this feeling inside that Colin is missing out on something and it usually happens around the times Colin gets evaluated through one of the different teams we work with. Colin has been evaluated now for his 6 months IFSP meeting through Miss D (developmental therapist) and on Wednesday will be evaluated by Miss K (PT).
As I mentioned yesterday, Miss D said that Colin falls around a 4 month age for several areas of development even though he is turning 6 months this week. There are certain areas he is on track with and other areas where he obviously a little bit behind. I understand that Colin's condition will cause delays in certain areas, but my heart has a little bit of trouble with this sometimes.
I spoke with Miss K on the phone today and she was telling me some of the things she will be looking at on Wednesday when she is evaluating Colin. Both Miss D and Miss K have been just the people we need for Colin (as I explained yesterday) because they have ways of talking me off of the ledge (my friend Meredith's reference for me when I panic).
I still panicked today because I wonder if we do enough for Colin...There are so many different types of things we can do for him, which we are trying as hard as we can despite everything going on in our lives right now. I think sometimes that this is one of those things that makes it difficult to be a parent of a child with Down Syndrome. You want to do everything you possibly can because you know that things are going to be more difficult for them than other children. You try as hard as you can, but sometimes, you get scared because you don't know if it's enough...
...so you just keep trying...and Colin keeps fighting...
and moments like these make it better...
and moments like these make it better...Saturday, October 17, 2009
Great Relationships II
Yesterday, I spoke about our great relationship with our pediatrician, which is extremely important when you have a child with special needs. Not only do you need to be an advocate yourself for your child, you also need to have members of a medical staff that will also advocate for them when they are going to school. We are extremely lucky to have this relationship with Colin's pediatrician.
Just as importantly, you need to have a great relationship with your child's therapists...
We are extremely lucky to have such great relationships with Colin's developmental therapist as well as physical therapist. They are both excellent; they are extremely knowledgable in their fields AND they both are extremely caring when they are with him. As you have seen in some of my other posts, Colin works REALLY hard when he is in therapy. If he didn't have such caring therapists, I don't think we would have the positive outcomes that we do.
Today, Colin had his 6 month evaluation with his developmental therapist Miss D. We love her! We are lucky because she is coming from the experience of a therapist as well as a mother of a child with some special needs. Colin smiled for her immediately today which is so nice to see. Based on the scales she was using, Colin falls around 4 months of age developmentally. It was a little bit hard to hear that because overall we think he is doing really well. There are some things that he doesn't do as well which is why he couldn't be scored on those things right now. Miss D reminded us that we need to just focus on the fact that those are things we just need to work more on. We will have Colin's 6 month meeting in a few weeks and we will determine where we need to go from here. Miss D suggested increasing Developmental therapy to once a week, which is also what Miss K suggested for PT. They would like to do this not because they feel is lagging far behind, but to make sure he stays on target. I welcome those changes because it would make me feel better to know that Colin is getting 2 hours a week of structured activities geared towards his needs.
You know you have a great relationship when you can talk openly and candidly with someone. We are lucky to have the therapists we do!
Just as importantly, you need to have a great relationship with your child's therapists...
We are extremely lucky to have such great relationships with Colin's developmental therapist as well as physical therapist. They are both excellent; they are extremely knowledgable in their fields AND they both are extremely caring when they are with him. As you have seen in some of my other posts, Colin works REALLY hard when he is in therapy. If he didn't have such caring therapists, I don't think we would have the positive outcomes that we do.
Today, Colin had his 6 month evaluation with his developmental therapist Miss D. We love her! We are lucky because she is coming from the experience of a therapist as well as a mother of a child with some special needs. Colin smiled for her immediately today which is so nice to see. Based on the scales she was using, Colin falls around 4 months of age developmentally. It was a little bit hard to hear that because overall we think he is doing really well. There are some things that he doesn't do as well which is why he couldn't be scored on those things right now. Miss D reminded us that we need to just focus on the fact that those are things we just need to work more on. We will have Colin's 6 month meeting in a few weeks and we will determine where we need to go from here. Miss D suggested increasing Developmental therapy to once a week, which is also what Miss K suggested for PT. They would like to do this not because they feel is lagging far behind, but to make sure he stays on target. I welcome those changes because it would make me feel better to know that Colin is getting 2 hours a week of structured activities geared towards his needs.
You know you have a great relationship when you can talk openly and candidly with someone. We are lucky to have the therapists we do!
Friday, October 16, 2009
Great Relationships
Only about a month before Colin was born, Chris and I decided we should probably try to find a pediatrician. With all the things we planned ahead for, that was one thing we never really thought of until we got closer to the end. Fortunately, friends of mine at work whose opinions I really value suggested we try their pediatrician because they loved her and had been using her for years. So, I called and set up an appointment several days before my due date and went in and talked with her.
I immediately had a great first impression of her because she came into the room we were waiting in, and sat down. She asked personal information about us and then gave her feelings on breast feeding versus formula and positives and negatives of both. She wasn't forcing us into any one direction but gave us the information and left it at that. She answered our questions and then gave her philosophy on vaccinations (spreads them out). She informed us that she is the head neonatologist at our hospital (which was a MAJOR plus) and told us that she would come and check in with Colin after he was born.
When I went into labor, the first 6 hours at the hospital went by pretty smoothly. After I received the epidural around noon, Colin's heartrate kept dropping and so the midwife in my group who was on call called one of my OBGYN doctors to be there and also called his pediatrician. Things happened very quickly from about 1-2:44 when he was born because they were very concerned. It got to the point where if he hadn't come out as quickly as he did, I would have had to have a c-section (I had already signed the paperwork for it). The pediatrician was there for his birth and she was the one who told us that she was testing him to confirm her suspicions of Trisomy 21.
From that moment on, she took care of Colin AND Chris and I. She spent lots of time checking him out in the Special Care Nursery and since that day, we have seen her at LEAST once a month (sometimes more, like early on). We are NEVER rushed, and she will sit and talk to just Colin every visit. You can tell she truly cares about her patients.
We are so lucky to have her as Colin's pediatrician as we know he is receiving the best care! Chris took Colin in today after I spoke with her. Colin's school called today and for the second day in a row, informed us that he was kind of lethargic and lazy and wasn't eating as much formula. Being the worry wart that I am, I called the doctor (I just fear the ear infections and such that we know Colin is more prone to having) and she told us to bring him in. Fortunately, he just has a little bit of congestion and so she prescribed a nebulizer to clear everything out.
I immediately had a great first impression of her because she came into the room we were waiting in, and sat down. She asked personal information about us and then gave her feelings on breast feeding versus formula and positives and negatives of both. She wasn't forcing us into any one direction but gave us the information and left it at that. She answered our questions and then gave her philosophy on vaccinations (spreads them out). She informed us that she is the head neonatologist at our hospital (which was a MAJOR plus) and told us that she would come and check in with Colin after he was born.
When I went into labor, the first 6 hours at the hospital went by pretty smoothly. After I received the epidural around noon, Colin's heartrate kept dropping and so the midwife in my group who was on call called one of my OBGYN doctors to be there and also called his pediatrician. Things happened very quickly from about 1-2:44 when he was born because they were very concerned. It got to the point where if he hadn't come out as quickly as he did, I would have had to have a c-section (I had already signed the paperwork for it). The pediatrician was there for his birth and she was the one who told us that she was testing him to confirm her suspicions of Trisomy 21.
From that moment on, she took care of Colin AND Chris and I. She spent lots of time checking him out in the Special Care Nursery and since that day, we have seen her at LEAST once a month (sometimes more, like early on). We are NEVER rushed, and she will sit and talk to just Colin every visit. You can tell she truly cares about her patients.
We are so lucky to have her as Colin's pediatrician as we know he is receiving the best care! Chris took Colin in today after I spoke with her. Colin's school called today and for the second day in a row, informed us that he was kind of lethargic and lazy and wasn't eating as much formula. Being the worry wart that I am, I called the doctor (I just fear the ear infections and such that we know Colin is more prone to having) and she told us to bring him in. Fortunately, he just has a little bit of congestion and so she prescribed a nebulizer to clear everything out.
Thursday, October 15, 2009
Look at me!
We are so proud...Colin is now appearing on Parenting.com in honor of Down Syndrome Awareness Month. Check him out here!! His section will pop up and then you just have to scroll through the pictures to get to him. He is number 3!
Thanks you all of you fellow bloggers out there for putting the information up! I'm glad Colin is part of it!
Thanks you all of you fellow bloggers out there for putting the information up! I'm glad Colin is part of it!
Wednesday, October 14, 2009
Look what I can do!
Colin has been starting to grasp the concept that he can hold the bottle himself. Every once in awhile, he will put his hands on the bottle and attempt to hold it himself. We are working on it as it is a "self-help skill". Tonight, before I picked Colin up to feed him, I handed him the bottle and this is what he did!
He was able to put the nipple in his mouth, but didn't go as far as lifting the bottle up to get the formula out of it. Baby steps!
Miss K has us working on another self-help skill...undressing himself! We slide his socks halfway off and then put his feet in reach and he will grasp the sock and pull it off! We cheer very loudly for him!
Tuesday, October 13, 2009
Then and Now...
I put these pajamas on Colin tonight and had to smile to myself because they are the "same" pajamas as his going home outfit (just a different size). I took a picture of Colin tonight to compare it to when Colin was 2 days old.
Now...
It's amazing to me at how in just under 6 months of time, so much has changed. Despite the fact Chris and I were waiting to have the test results confirmed that Colin had Down Syndrome, we were the happiest parents. We were so in love with our little boy and couldn't wait to bring him home with us. Fortunately, we only had to wait one extra day.
I can vividy remember very gently putting on this outfit for Colin in his bassinet for our trip home. We were so thankful for all of the love and care Colin's nurses gave him, and us, but we were ready to go home. I remember feeling as though I couldn't wait to get home to take care of my baby without someone always watching over my shoulder. In the beginning, it was nice, because we learned so much about how to care for Colin that we wouldn't have gotten if Colin was "healthy". We watched a nurse bathe him for the first time, gave us techniques for feeding, how to keep him warm by swaddling him, etc. We were so happy to have the extra attention that I cried when we left!
...There was nothing like being home with our baby...
Now...
Then...
Now...
Then...
Now...
Then...
Then...It's amazing to me at how in just under 6 months of time, so much has changed. Despite the fact Chris and I were waiting to have the test results confirmed that Colin had Down Syndrome, we were the happiest parents. We were so in love with our little boy and couldn't wait to bring him home with us. Fortunately, we only had to wait one extra day.
I can vividy remember very gently putting on this outfit for Colin in his bassinet for our trip home. We were so thankful for all of the love and care Colin's nurses gave him, and us, but we were ready to go home. I remember feeling as though I couldn't wait to get home to take care of my baby without someone always watching over my shoulder. In the beginning, it was nice, because we learned so much about how to care for Colin that we wouldn't have gotten if Colin was "healthy". We watched a nurse bathe him for the first time, gave us techniques for feeding, how to keep him warm by swaddling him, etc. We were so happy to have the extra attention that I cried when we left!
...There was nothing like being home with our baby...
Monday, October 12, 2009
We're More Alike Than Different
Please take a minute to watch this video. I am truly inspired and BELIEVE there is a world of possibilities out there for Colin...
Sunday, October 11, 2009
Congratulations Grandad!
We are so proud of Grandad for completing his 1st marathon and running 26.2 miles! He did it in honor of Colin and we are so thankful that he thought of Colin this way.
Here is Colin and Grandad together (Nana and Grandad drove all the way down here from Connecticut just to see Colin!). Even though it was a HUGE accomplishment for Grandad, he gave Colin his medal which Colin is so proudly wearing!
The 2nd picture is a closeup of Colin wearing the medal and his new t-shirt from grandad that says "furture marathon runner". Colin will wear it proudly!
We love you!
Saturday, October 10, 2009
Move Over Allison...
...here's Ellie!!
In other updates...here are some of the new exercises Colin is doing! In this first picture, Colin is in the middle of doing one of his exercises where we lay him on the ball, and he lifts himself up to a sitting position! We hold his hips to support him, but it's so funny to watch because he really grunts to sit up and then is out of breath!
In this picture, Colin got himself to a sitting position...
Colin also lays on his tummy on the ball and lifts his head up!
Colin met a new friend today! Her name is Ellie and she is a cutie! They hung out together for a few hours and here are some pics of their meeting...they held hands! Colin is becoming quite the ladies man!
In other updates...here are some of the new exercises Colin is doing! In this first picture, Colin is in the middle of doing one of his exercises where we lay him on the ball, and he lifts himself up to a sitting position! We hold his hips to support him, but it's so funny to watch because he really grunts to sit up and then is out of breath!In this picture, Colin got himself to a sitting position...Colin also lays on his tummy on the ball and lifts his head up! 
He smiled at daddy while he was doing it...
He is still lifting his head really high when on his tummy on the ground!
It's all such exhausting work though!
Friday, October 9, 2009
31 for 21
I apologize for breaking the 31 for 21 challenge but yesterday I couldn't get one extra minute to put a post up.
I belong on a listserve for families with a child with Down Syndrome and an email was recently sent out regarding the new show on Fox called Glee. In one of the more recent shows, a woman is talking about morning sickness and when asked said that morning sickness is a good thing because it means that your child is not going to be a "mongoloid". I followed the link and watched the clip because I assumed when it was mentioned in the email, that the negative comment was going to be regarding the use of the word "retarded" or something along those lines. I actually felt sick to my stomach for all of the people living with Down Syndrome and how hurtful a word like that is.
Throughout all of my early research regarding Down Syndrome when Colin was born, I read a lot about how children with Down Syndrome were often referred to as Mongoloids because of their appearance and mental capacities. I read the story by Gene Stallings about his son who was born in the 1950s (I'm pretty sure it was that time period) and it was suggested to them, and many other families, that they institutionalize their children because of their diagnosis. They were considered "uneducatable". It amazes me how far we have come that when someone is diagnosed with Down Syndrome today, it really means that they have a world of possibilities ahead of them, just like anyone else. Education is key, just like anyone else. Love is key, just like anyone else.
Sitcoms and comedies are designed to be funny. I enjoy laughter. However, I found it extremely hurtful that Fox chose to use such a word...period. I am sitting here trying to find a way to word this, but I don't even have to explain myself.
Chris and I were heartbroken when we found out that Colin had a diagnosis of Down Syndrome. We were scared and feared the unknown. Would he have health problems? Would he graduate high school? Would he ever get married? Is school going to be difficult for him?
However, Colin is the best thing that has ever happened to us and we wouldn't be who we are now if it weren't for him. It's always scary to venture off on a path that you hadn't planned in the beginning but just like anything else, you find your way and you realize it's ok to be on that path.
I'm sure we will still have some questions along the way and may have fears about the unknown, but Colin is showing us every day that with perserverance, you can accomplish anything...that's pretty good for only being 5 months old.
Thanks to Colin and to our friends and family, we are all raising awareness for Down Syndrome. We will change stereotypes so that hopefully, TV networks won't use hurtful words to make people laugh.
I belong on a listserve for families with a child with Down Syndrome and an email was recently sent out regarding the new show on Fox called Glee. In one of the more recent shows, a woman is talking about morning sickness and when asked said that morning sickness is a good thing because it means that your child is not going to be a "mongoloid". I followed the link and watched the clip because I assumed when it was mentioned in the email, that the negative comment was going to be regarding the use of the word "retarded" or something along those lines. I actually felt sick to my stomach for all of the people living with Down Syndrome and how hurtful a word like that is.
Throughout all of my early research regarding Down Syndrome when Colin was born, I read a lot about how children with Down Syndrome were often referred to as Mongoloids because of their appearance and mental capacities. I read the story by Gene Stallings about his son who was born in the 1950s (I'm pretty sure it was that time period) and it was suggested to them, and many other families, that they institutionalize their children because of their diagnosis. They were considered "uneducatable". It amazes me how far we have come that when someone is diagnosed with Down Syndrome today, it really means that they have a world of possibilities ahead of them, just like anyone else. Education is key, just like anyone else. Love is key, just like anyone else.
Sitcoms and comedies are designed to be funny. I enjoy laughter. However, I found it extremely hurtful that Fox chose to use such a word...period. I am sitting here trying to find a way to word this, but I don't even have to explain myself.
Chris and I were heartbroken when we found out that Colin had a diagnosis of Down Syndrome. We were scared and feared the unknown. Would he have health problems? Would he graduate high school? Would he ever get married? Is school going to be difficult for him?
However, Colin is the best thing that has ever happened to us and we wouldn't be who we are now if it weren't for him. It's always scary to venture off on a path that you hadn't planned in the beginning but just like anything else, you find your way and you realize it's ok to be on that path.
I'm sure we will still have some questions along the way and may have fears about the unknown, but Colin is showing us every day that with perserverance, you can accomplish anything...that's pretty good for only being 5 months old.
Thanks to Colin and to our friends and family, we are all raising awareness for Down Syndrome. We will change stereotypes so that hopefully, TV networks won't use hurtful words to make people laugh.
Wednesday, October 7, 2009
Physical Therapy Update!
Colin had a physical therapy session today with Miss K and fortunately I was able to be there! It has been almost 3 weeks because Miss K was finally able to take a vacation to Hawaii which sounded wonderful!
Colin had a really good session today as he showed Miss K some of the new things that he is doing including lifting his legs and starting to touch them, rolling easily from tummy to back, reach and grasping in different planes, attempting to lift himself up from his back on the exercise ball, etc. she was very happy with his progress and we chatted about his ITAP assessment. She was telling us that even though they were expecting him to sit, she is going in a specific progression with him so that he does all of steps with the right form and accomplishes them before moving on.
He was very vocal with her and very happy to see her! More pictures to come this weekend about the new exercises we have to work on!
Colin had a really good session today as he showed Miss K some of the new things that he is doing including lifting his legs and starting to touch them, rolling easily from tummy to back, reach and grasping in different planes, attempting to lift himself up from his back on the exercise ball, etc. she was very happy with his progress and we chatted about his ITAP assessment. She was telling us that even though they were expecting him to sit, she is going in a specific progression with him so that he does all of steps with the right form and accomplishes them before moving on.
He was very vocal with her and very happy to see her! More pictures to come this weekend about the new exercises we have to work on!
Tuesday, October 6, 2009
31 for 21 Day 5! Moving forward!
I was just recently noting to Chris after seeing the picture of colin and alison that colin wasn't lifting his legs and grabbing his feet. In the past few days, colin has been starting to lift his legs up and putting his hands on his knees. He's getting closer! Pretty soon he will be grabbing hold!
...another way Colin reminds me to not worry if he's not doing something. He will, it just happens at his own pace!
...another way Colin reminds me to not worry if he's not doing something. He will, it just happens at his own pace!
Monday, October 5, 2009
One Step at a Time
For those of you who don't know me, I am a rule follower, I have always hated confrontation and arguments, and pretty much have always done what I'm supposed to for fear of the consequences.
Needless to say, being told that my child was diagnosed with Down Syndrome wasn't easy because it means that Colin isn't necessarily going to do things in the time frame he is "supposed to". He wasn't going to be following the "rules" of development. I jumped right into the research to make sure I understood DS, to find out what we needed to do (Early Intervention, blood tests, hearing tests, heart tests, etc.), when we needed to do things, when Colin might do things, and how we were supposed to go about all of this.
Through all of the early assessments, we were told things like: "Colin has low muscle tone" or "Colin probably won't hit milestones when other children do", or "he might have health problems", etc. It's not easy when it's still new to be told so many "negative" things along the way, especially when for 9 months we were expecting something different.
I have been writing about how people in our lives are raising awareness about Down Syndorme because of the wonderful things they are doing, but the most important person that is doing this is Colin. He is raising awareness of Down Syndrome by showing that he doesn't follow no sticking rules.
At first, he wasn't eating very well and now he eats solids (loves them) and holds his own bottle some of the time:
We were told that Colin had low muscle tone after a 2 min. evaluation so at 4 weeks, he rolled over from tummy to back over and over and over again...
Because of his low muscle tone, we were told he had to do tummy time all of the time. He wasn't always happy and in the beginning, he didn't do very well.
...and now he does this:
He couldn't sit...
...and now does this!
Needless to say, being told that my child was diagnosed with Down Syndrome wasn't easy because it means that Colin isn't necessarily going to do things in the time frame he is "supposed to". He wasn't going to be following the "rules" of development. I jumped right into the research to make sure I understood DS, to find out what we needed to do (Early Intervention, blood tests, hearing tests, heart tests, etc.), when we needed to do things, when Colin might do things, and how we were supposed to go about all of this.
Through all of the early assessments, we were told things like: "Colin has low muscle tone" or "Colin probably won't hit milestones when other children do", or "he might have health problems", etc. It's not easy when it's still new to be told so many "negative" things along the way, especially when for 9 months we were expecting something different.
I have been writing about how people in our lives are raising awareness about Down Syndorme because of the wonderful things they are doing, but the most important person that is doing this is Colin. He is raising awareness of Down Syndrome by showing that he doesn't follow no sticking rules.
At first, he wasn't eating very well and now he eats solids (loves them) and holds his own bottle some of the time:
We were told that Colin had low muscle tone after a 2 min. evaluation so at 4 weeks, he rolled over from tummy to back over and over and over again...Because of his low muscle tone, we were told he had to do tummy time all of the time. He wasn't always happy and in the beginning, he didn't do very well.
...and now he does this:He couldn't sit...
...and now does this!
And many, many more!!
I will tell you that this journey isn't always easy. However, Colin is bringing awareness to everyone about Down Syndrome by saying that just because I have this diagnosis, doesn't mean that I can't do things!
...and I think he's going to break the mold!
Sunday, October 4, 2009
31 for 21 Day 3!
I have noticed in some other blogs who are participating in this challenge that they are opening themselves up for questions regarding their children and Down Syndrome in general. Please feel free to ask any questions about Colin and Down Syndrome because I will gladly answer them...
_______________________________________________________________
Last year in February, our friends Jorie, Zach, Joe, and Melissa participated in the Polar Bear Plunge in Seaside Heights, NJ to. I went along, 6 months pregnant, to support them in their plunge to raise money for the Special Olympics of NJ. At the time, unbeknownst to myself and Chris, Colin was developing inside of me with an extra chromosome. Who would have known then, that this year, we would all be participating in the Polar Bear Plunge in honor of Colin.
Very shortly after Colin was born, Jorie took the initiative and sent out an email to all of our friends and family with the goal of getting everyone to participate in the Polar Bear Plunge as a team. As time has gone by, this intiative has turned into a reality and we will be plunging as Team CAT Crew in honor of Colin ro raise money for the Special Olympics of NJ.
The Special Olympics has a very important mission and philosophy in mind:
_______________________________________________________________
Last year in February, our friends Jorie, Zach, Joe, and Melissa participated in the Polar Bear Plunge in Seaside Heights, NJ to. I went along, 6 months pregnant, to support them in their plunge to raise money for the Special Olympics of NJ. At the time, unbeknownst to myself and Chris, Colin was developing inside of me with an extra chromosome. Who would have known then, that this year, we would all be participating in the Polar Bear Plunge in honor of Colin.
Very shortly after Colin was born, Jorie took the initiative and sent out an email to all of our friends and family with the goal of getting everyone to participate in the Polar Bear Plunge as a team. As time has gone by, this intiative has turned into a reality and we will be plunging as Team CAT Crew in honor of Colin ro raise money for the Special Olympics of NJ.
The Special Olympics has a very important mission and philosophy in mind:
Mission
To provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
To provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
Philosophy
Special Olympics is founded on the belief that people with intellectual disabilities can, with proper instruction and encouragement, learn, enjoy and benefit from participation in individual and team sports, adapted as necessary to meet the needs of those with special mental and physical limitations.
Special Olympics believes that consistent training is indispensable to the development of sports skills, and that competition among those of equal abilities is the most appropriate means of testing these skills, measuring progress and providing incentives for personal growth.
Special Olympics believes that through sports training and competition, people with intellectual disabilities are benefited physically, mentally, socially and spiritually; families are strengthened, and the community at large, both through participation and observation, is united in understanding with intellectual disabilities in an environment of equality, respect and acceptance.
Special Olympics is founded on the belief that people with intellectual disabilities can, with proper instruction and encouragement, learn, enjoy and benefit from participation in individual and team sports, adapted as necessary to meet the needs of those with special mental and physical limitations.
Special Olympics believes that consistent training is indispensable to the development of sports skills, and that competition among those of equal abilities is the most appropriate means of testing these skills, measuring progress and providing incentives for personal growth.
Special Olympics believes that through sports training and competition, people with intellectual disabilities are benefited physically, mentally, socially and spiritually; families are strengthened, and the community at large, both through participation and observation, is united in understanding with intellectual disabilities in an environment of equality, respect and acceptance.
We are honored to participate in such a special cause and will all be there, including Colin, in February to support. Thank you Jorie and Zach for initiating this and to the rest of our friends and family for showing your support for Colin, the Special Olympics, and the Down Syndrome Community.
Thank you for raising awareness of Down Syndrome!
If you are interested in donating, please click here for my webpage.
Saturday, October 3, 2009
31 for 21 Day 2!
Chris, Colin and I are blessed with the most wonderful family and friends. From the very beginning, since well before Colin's diagnosis of Down Syndrome was confirmed, we have had friends and family rally around us and fully support us through this journey. I know that we would have picked ourselves up without the support because of Colin, but we never would have gotten up so quickly without the amount of hands that have held ours since the beginning.
Because of Colin, we have had so many of our friends and family researching Down Syndrome to understand it better and finding their own ways to show their support to the community in honor of Colin. In honor of Down Syndrome Awareness month, I would like to thank and pay tribute to our friends and family for all of your support!
In an earlier post, I spoke about how my brother Tim participated in a triatholon in Boulder, Colorado in honor of Colin while raising money for the Special Olympics. Click on the previous sentence to read more about it...
This week, my Dad (Colin's Grandad) is preparing to run in the ING Marathon in Hartford, Connecticut on Saturday...and he is doing it in honor of his grandson Colin. I am so proud of him that he is going to do this at 53 years old!
Dear Dad/Grandad~
Thank you for support of Colin by attemtping to run 26.2 miles. We know that it sometimes feels like a daunting task for you, but we are so proud of you and honored that you are doing this for yourself and for Colin. We wish you the best of luck and we love you so much!
Love,
Kelli, Chris, and Colin
xoxoxoxoxxoxoxxo
Friday, October 2, 2009
31 for 21 Challenge
I recently just discovered that this month is Down Syndrome awareness month and I've decided to take part in the challenge 31 for 21. This challenge is designed to post an entry every day for the 31 days of October about anything your heart desires with the hopes of bringing awareness to Down Syndrome.
I am honored to participate in this challenge because my own awareness of Down Syndrome has significantly changed because of Colin.
When we found out that Colin had Down Syndrome it felt like nothing I had ever felt before. I can still picture myself in the moment when Colin's pediatrician confirmed the diagnosis; where I was sitting, what I was doing, how I told my husband, how I even put the phone down on the couch next to me. I remember feeling like my world was falling apart because I didn't know what we were going to do or what was going to happen to Colin.
One thing I have learned since that day is to take one step at a time…Colin has taught me to slow down and appreciate all of the little milestones along the way that build up to the bigger ones.
I am proud of Colin because he is showing us as his parents, his grandparents, aunt and uncles, friends and other relatives that he is a strong little boy. It’s ok that it takes him a little bit longer to accomplish a task because he will get there. I know that along the way we will have our good moments and not so good ones, but we will stand tall and take them one at a time, hand in hand as any family would.
I also should say that we wouldn’t be where we are today if we didn’t have the support of our friends and families. Colin is spreading awareness to everyone and we are so thankful that you all are supporting him in your own ways. Thank you for hugs and smiles, love and laughter, meals and babysitting, donations to charities and physical challenges in support of Colin…..
One step at a time…
I am honored to participate in this challenge because my own awareness of Down Syndrome has significantly changed because of Colin.
When we found out that Colin had Down Syndrome it felt like nothing I had ever felt before. I can still picture myself in the moment when Colin's pediatrician confirmed the diagnosis; where I was sitting, what I was doing, how I told my husband, how I even put the phone down on the couch next to me. I remember feeling like my world was falling apart because I didn't know what we were going to do or what was going to happen to Colin.
One thing I have learned since that day is to take one step at a time…Colin has taught me to slow down and appreciate all of the little milestones along the way that build up to the bigger ones.
I am proud of Colin because he is showing us as his parents, his grandparents, aunt and uncles, friends and other relatives that he is a strong little boy. It’s ok that it takes him a little bit longer to accomplish a task because he will get there. I know that along the way we will have our good moments and not so good ones, but we will stand tall and take them one at a time, hand in hand as any family would.
I also should say that we wouldn’t be where we are today if we didn’t have the support of our friends and families. Colin is spreading awareness to everyone and we are so thankful that you all are supporting him in your own ways. Thank you for hugs and smiles, love and laughter, meals and babysitting, donations to charities and physical challenges in support of Colin…..
One step at a time…
Some Fun Colin Updates
Here are some fun pictures of Colin to update you with some of the things I've been talking about lately...
This first picture is Colin at school with his new girlfriend Alison. I took out Alison's face just because I don't know her parents and not sure how she would feel about me posting their daughter on the web...
This is the picture that caught Colin and Alison holding hands together when no one was looking.
This next picture is Colin sitting at the table at school like a big boy! Chris put him in the chair at the table just to get a picture...which I'm very thankful for!
We are so proud of Colin!
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