31 for 21: Fine Motor Skills (7)

One of the characteristics that people with Down Syndromie often have are smaller and shorter fingers and hands.  The same applies to their feet as well in a lot of situations.  Because of the smaller fingers, they often have decreased strength in their hands and fingers which influences the ability to hold utensils for eating, drawing, writing, etc.  In the first picture below, you will see Colin's right hand followed by Kailey's right hand.  

One of the most obvious differences between their two hands is the length of their fingers.  Before we ever had an occupational therapist in our home for Early Intervention (they specialize in fine motor skills), our physical therapist used to emphasize activities that required Colin to support his body weight on his hands. She always stressed that for children with Down Syndrome, it was really important to follow the typical phases of development (push to sit, crawling and then walking) because crawling was crucial for hand strengthening.  One thing she always boasted about Colin was that even though his physical development took longer than a typical child (and even for kids with Down Syndrome), he followed the correct patterns and would accomplish each phase correctly before moving onto the next.  

When it came to Colin's fine motor skill development, it was always more challenging than other areas.  One of Colin's weaknesses is that when something becomes too challenging and frustrating (especially when he tried something many times) he will give up on the activity and move on to something else.  Because of this, we have always struggled to keep his attention to task on activities that required him to hold a writing or drawing utensil.  

Through the years, we have always incorporated activities into Colin's daily life that would require him to use his pincer grasp (picking up small objects, trying to zipper coats, etc.) to help build his muscle strength in his hands.  It was always frustrating to me that Colin never really had an interest in puzzles and for the longest time, I thought it was because he didn't have the problem solving skills to figure out where the pieces should go.  However, most of the time he could make the connection as to where the piece should go, but then would give up when he couldn't figure out exactly how to position it to make it fit.  It would be incredibly frustrating for him to not be able to fit the piece exactly in the spot.  We have now realized that he can successfully complete puzzles using the ipad because we took out the component of having to manipulate the pieces.  

It has taken a really long time but Colin's interest level in using writing utensils is finally starting to emerge. We find that his attention to task on activities that require tracing, writing or drawing is significantly improving. One of the biggest motivating tools for this has been the magnadoodle.  We have had this toy since Colin was 1 year old but only recently has he really begun to use it.  We are finding that even though his hand strength is still lacking when it comes to holding the pen well, he is starting to correctly position his hand on it.  

We are also finding out from both of Colin's occupational therapists (he sees one at school and a private one in conjunction with his feeding therapy) that he is really motivated by using scissors.  They have special loop scissors for him to use that just require him to squeeze the end to get the scissors to open and close versus the traditional scissor which require you to have the strength to open and close them.  I finally found them on Amazon so I am going to order a few pairs for him to use.  

I have always felt a little bit anxious because of Colin's lack of interest in using crayons, pencils, etc. because of the fact that kindergarten feels right around the corner.  It concerned me that he wouldn't quite be ready to work with writing letters and numbers independently.  However, we are finding that his interest level is very quickly starting to change and I think a lot of this has to do with increasing strength in his hands.  Now that he has become very independent with pulling up and down his pants (this takes him awhile to do it because of the lack of strength in his hands) and participating more in other activities requiring the use of his hands, his hand strength is improving which is becoming more motivating for other fine motor activities.  I think this will be a big year for him for development of these skills which in turn will help with the production of activities requiring him to use writing utensils.  

31 for 21: Special Olympics of NJ Polar Bear Plunge (6)

One of the biggest fundraising events every year for the Special Olympics of NJ is their annual Polar Bear Plunge which is typically held in Seaside Heights, NJ (but was moved last year because of Superstorm Sandy).  The event is well known because it draws thousands of people who all raise money for the Special Olympics and then those same people jump into the Atlantic Ocean in February when it is typically around 33-36 degrees.  This event has been raising over or around $1 million dollars each year that it is held.  

I will always be grateful to my close friend, Jorie for initiating CAT Crew's involvement in the polar bear plunge.  She came to Chris and I with the idea while we were still in the hospital after Colin was born and dealing with the diagnosis.  That first year, we raised around $30,000 and each subsequent year we have continued to raise more and more (We are hovering around the $200,000 mark in 4 years!).  CAT Crew's successes are due to each individual team member who have participated and raised anywhere from $100 to over $10,000!  We are comprised of family and friends, and friends of friends who have joined and participated and showed their support to Colin.  It is a wonderful thing to be a part of a group who raises money for that very same organization that Colin benefits directly from.  

2010

2011

2012

2013

Each year brings so many great things with it and we look forward to making 2014 the best year yet.  We would love to have YOU join CAT Crew and plunge with us!  For more information and to register with Team CAT Crew, click THIS LINK.  

31 for 21: Special Olympics of New Jersey (5)

"For if you seek joy, come see the athletes of Special Olympics! If you seek peace and understanding, come see the athletes of Special Olympics! If you seek courage or strength or skill, come see the athletes of Special Olympics" - Eunice Kennedy Shriver

Colin first started participating in the Special Olympics of New Jersey Young Athlete program when he was just over 2.5 years old.  At that time, he was walking with assistance but could not successfully walk independently.  In fact, he was still having some difficulties walking with help and if he became too tired, he would simply sit down and resort to crawling.  We had already started to become involved and meet some of the staff that worked at the facility because of CAT Crew's fundraising efforts for the annual polar bear plunge but we were excited to now have Colin participating as an athlete.  

That fall, Colin participated in his first Fall Festival and it was where we met Coach Greg, a physical therapist that works with the Special Olympics, for the first time.  

From that point forward, Colin had officially become a "Young Athlete" and began participating in their weekly sessions at the Special Olympics headquarters.  The Young Athlete program is designed for children ages 2.5 to 7 years old and the goal is to build the fundamental skills needed to later participate in sports. For him, the program has been a perfect fit because it has allowed him the freedom to play at his pace and with independence, but practice with the routines and structures of sport activities.  Coach Greg is there to assist in the development of these skills along with countless volunteers who help the athletes to play and participate.  Coach Greg is both patient and fun but also maintains a good structure with the kids.  

The big event every year is the Summer games which is held every June and is a culmination of many sporting events as well as the young athlete future stars race.  That first summer, Colin was a little rusty to get started but then ran with assistance to the finish line.  

The young athletes are made to feel like little stars at the completion of their race with a medal from a law enforcement official and lots of hugs and high fives too.  We were so proud that first year to see how far Colin had come from the little boy who started out not quite walking and then 6 months later, running in a race on the track.  

This past summer, we had some difficulties in keeping Colin involved for the full time the young athlete activities were taking place before the future stars race (he wanted to be running and around and exploring the grounds with all of the activities taking place).  However, there were a lot of great volunteers who helped to keep the kids having fun and involved.  

He absolutely LOVED the future stars race this year and was such a big boy following directions waiting for his race to start.  Not to mention, the same little boy who started the Special Olympics NOT walking was running in the race as fast as he could.  

He was SO PROUD to show off his medal for what he had accomplished all by himself.  

These days, we try to make it to the Young Athlete program as often as possible because it is beneficial to BOTH Colin and Kailey now. We choose to drive a little further to the NJ headquarters instead of participating in a local YAP because we like the people that run and work these weekly sessions (and enjoy being at the facility too!).  

Colin's stamina is still not quite as long as we'd LIKE it to be, but he runs around from station to station often trying things for 30 seconds or less before moving on to the next activity.  

We love to see familiar faces and friends and have lots of fun too.

If you are a New Jersey resident, check out the Special Olympics of New Jersey website for more information on what the Special Olympics is all about and what it might be able to provide for your athlete. They are always looking for volunteers to assist in many different activities and events so if you are looking for a rewarding experience, click on the volunteer tab at the top of their page for more information.  

For more information or to register for the Young Athlete program, click on this link for registration information.  

For our family, the Special Olympics is a great way to help build Colin's confidence in participating in sport activities and to prepare him for his future in sport activities.  We are incredibly grateful for all that it has to provided to us in just 2 years.  

...and in honor of Down Syndrome awareness month...

31 for 21: Friends for Life (4)

When Kailey was first born, Chris and I were anticipating that her and Colin would immediately become the best of friends.  Instead, Colin basically acted as though she weren't there aside from the occasional photo we posed with the two of them.  We started to wonder when we would see him doting on her and if it was even normal for him to not even care either way if she was there.  

With time, we did start to see that transformation take place.  While there are lots of times that Colin deliberately steals toys from Kailey, she won't share her babies with him, they can't decide on the same show to watch, they push and shove and scream and cry, there are MANY MORE times that they are the best of friends.  

One of the things we have always observed about Colin is the fact that he often parallel plays with other kids his age instead of actively participating with his peers.  Most of this is due to his lack of effective communication when playing.  We know this will change with time as his communication skills improve, but what is most amazing to me to watch now is Colin and Kailey deciding on an activity together, setting it up, and playing together for an extended period of time while communicating in their ways.  He does not have the same kinds of struggles in playing with her that he has with other kids.  

Kailey deserves a lot of this credit due to her incredible patience with him and her guidance/positive reinforcement during activity.  Just the other day, I sat and watched them discuss bowling, set it up, take turns and play for a solid 30 minutes together.  They cheered for each other, gave high fives and at the end, hugged when they were done.  I sat there with tears streaming down my face because I was just so excited to see how their relationship has progressed.  

I look forward to seeing this friendship of theirs grow and grow and I am thankful that they will always have each other.  

31 for 21: The Bus (3)

When Colin turned 3, he transitioned from Early Intervention where we had a physical, occupational and speech therapist coming to the home multiple times a week to him getting on a bus and going to a new school.  It was such a conflicting feeling for us because while we were 100% ready to start the preschool program (it became really difficult for him to be receiving therapy at home when we were there) it was crazy that we were going to be putting our 3 year old BABY on a BIG bus!  In a year and a half span of time, we have seen an evolution of development from when the bus first pulled up on April 20, 2012 to today.  

Walking into school 4/20/12

Getting off of the bus 4/20/12

 I just teared up as I looked at that picture because I can't believe how much of a baby he still was!  For the most part, Colin has always done really well with the transition of getting on and off the bus.  However physically, it has always been a challenge because the first step is so high off of the ground and he had a hard time climbing up all by himself.  We went through the period of time when he wouldn't cry, but would make his body like jelly when we expected him to climb up without help.

These days, Colin is a true champ and is excited to see the bus come in the morning.  When Chris sent me the video below this morning, I couldn't help but feel so proud of how far he has come in such a relatively short period of time.  If you think about it, most kids don't get on a bus until they are 5 and here Colin has been getting on every day since he was 3.

We are so proud of our little boy.  Despite the fact that Colin may be facing some challenges in the future in terms of his development, we still expect that he will be able to do ANYTHING.  

For us, "I can't" turns into trying harder, or practicing more, or doing it again until he can.  When he started school a year and a half ago, he literally couldn't climb up the stairs to that bus alone...  

...and look at him today!

31 for 21: Dental Concerns (2)

When you have a child who is diagnosed with Down Syndrome, it is important to become informed about some of the potential health concerns that can happen.  This can seem overwhelming at first, especially when you need to start seeing different kinds of specialists.  However, many of the Down Syndrome organizations and medical facilities have healthcare guidelines that give approximate ages that certain evaluations should be completed.  This is typically followed by the pediatrician, but it's always good to be aware of these timelines. 

Many of these guidelines highlight dental concerns and it is recommended that the first dental visit be within 6 months of the first tooth eruption or by 1 year.  We were a bit off with these recommendations, partly because Colin's eruption of teeth did occur later than other typical children and happened in a slightly different order than is usually expected for babies.  It is also expected that children with Down Syndrome may have smaller than normal or slightly misshapen teeth.  I have always been aware of the fact that Colin's teeth do seem smaller and have pointier ends than most and his teeth have never seemed as white as other kids.   

More recently (past year), we have noticed some changes that have been taking place with Colin's teeth.  At first, it started to look like they were become slightly speckled but in the past 6 months, they are actually appearing a purplish color that gets darker over his molars (particularly the top of his mouth).  I have been doing some research to see if I can narrow down what may be causing this (before heading to the dentist) but I can't seem to find anything other than a high incidence of periodontal disease in people with Down Syndrome.  We were only at the dentist in June and a pretty thorough exam was done despite the fight that Colin put up when the hygienist and dentist were in his mouth.  Neither Chris nor I have ever had a cavity so I am honestly unsure of what that would look like, but I can't imagine that his teeth would be completely covered like that in cavities.  I started changing my searches to try and correlate anemia with dental issues but it still seems to tie back into periodontal disease.  When I try and search images of periodontal disease, I don't see anything that looks like Colin's appearance of his teeth (and I am finding some SCARY looking pictures when I try to do it this way).  Another correlation I am trying to make is whether or not reflux has played a role in wearing away the enamel of his teeth.  Could this possibly create discolored teeth?  I am concerned because I start thinking about a massive infection that is in his mouth (he can have pretty bad breath at times but is usually fixed by brushing his teeth).  We brush twice a day, he takes a multivitamin, and he really doesn't eat much in terms of sweets so I am hoping that this won't be a significant problem we will be facing.  

Another "sign" that is discussed about people with Down Syndrome is that they can have enlarged tongues or a normal tongue in a smaller sized jaw causing the tongue to appear bigger.  When Colin was a baby, this was something that Chris and I analyzed more closely.  I am not sure why this was such a big hang up for us, but in the early days of dealing with the diagnosis, we had a hard time with it if his tongue hung out of his mouth.  His tongue has mostly been hanging out of his mouth a small amount (usually it was just the tip that would be visible) and directly correlates to how tired he is.  In Colin's case, his tongue would be visible because of lower muscle tone in his mouth which has significantly improved as the years have gone by through different therapies and more simply, because of the need for better muscle control in speech production, chewing, etc.  The picture just above and below this paragraph show what we sometimes see of Colin's tongue when he is tired.  

For more information on dental issues in people with Down Syndrome, you can click on this link which will take you the National Down Syndrome Society website.  

31 for 21: Meet Colin! (1)

October is National Down Syndrome Awareness month! I am excited to participate in another 31 for 21 challenge where I will post for 31 straight days to help raise awareness about Down Syndrome.  I am excited to participate to share information about what life is like for our son Colin and for our family as a whole.  

Meet Colin!

Colin is a 4.5 year old little boy who was diagnosed with nondisjunction Trisomy 21 (commonly known as Down Syndrome) at birth and confirmed a week later through a genetic blood test.  Nondisjunction is the most common type occurring in 95% of the babies born with Down Syndrome.  In all of our cells of our body, we have 23 pairs of chromosomes which contain all of the genetic information for us.  We get 1 chromosome from each of our parents.  Either at conception or just prior, one of the pairs of chromosomes in either the sperm or the egg at the 21st chromosome fails to separate creating an extra copy in all cells of the body.  Because of this extra copy found in all of the cells, development is altered and many of the signs and symptoms of Down Syndrome are created.  

While Colin has typically fallen in the lower percentages of the growth chart for height and weight, he has really started to move up the charts weighing in now at 35 pounds and just over 3 feet tall.  Medically, we have been very lucky as Colin was not born with any heart or bowel defects which typically require surgery.  He has experienced two cases of anemia, one of which we are treating now and took medication until the age of 3 for possible hypothyroidism.  He has since been taken off of the medication as all thyroid levels have been normal.  He has had surgery for a reverse descending testicle and we are thinking we will have another one in the future.  His vision has been checking out fine and although we spent the first year and half with failed hearing tests, we have had many successful follow ups at the Ear Nose and Throat doctor.  We currently follow up with a gastroenterologist because of reflux and constant constipation.  Our biggest challenge we have faced and are still working on today are feeding issues, however, the feeding therapist thinks they are more behavior based and not sensory (I'll talk more on this in another post).  

Colin is currently enrolled in a 3 hour self-contained preschool program through our township public school district and attends a daycare facility in the afternoon with his sister.  He has always been a learner who spends time observing before feeling comfortable to try or join in on different tasks.  His primary interests are sports based as he loves watching basketball and sometimes soccer games.  He participates in the young athlete program through the Special Olympics and takes swim lessons once a year.  

He is an incredibly loving little boy who also likes his personal space and prefers personal contact on his own terms.  He loves to wrestle with daddy, read books, and swim in the ocean at the beach.  Physical activity is more tiring for him than most kids so he does not have the same stamina.  He is becoming increasingly independent and is often heard saying "I do".  

Most especially, we raise Colin just like we do Kailey and treat him like any other typical little boy.  The difference is that things may need to be explained differently, or repeated an extra 1-2 times, or sometimes he just needs to be shown something in order to understand how to complete the task.  We make him be independent, he is put in timeout, asked to say sorry, clean up after himself, use his manners, don't let him give up and keep pushing him to try until he can accomplish something.  

While the diagnosis of Down Syndrome was a scary one in the beginning, 4.5 years later it feels like things are just normal.  We have felt a significant impact on our family because of Colin in a positive way and he has inspired many good things in many people.  There are days when some of the challenges are a little frustrating, but, we have different kinds of challenges with our typical daughter which feel just as frustrating.  This is our life and we wouldn't ask for anything different...

I look forward to sharing information about Colin with you and hope to shed some light on Down Syndrome! Welcome to Down Syndrome Awareness month!