Back to School

Tommy first day of school was on August 18th. We are very excited to work with his new team this year and we are glad he got the same OT from last school year. Tommy attended to preschool the last two months of the last school year, which didn't give him enough time to completely adjust to the school settings. Tommy had regressions in his development because he was ill with the RSV. But in the last few days, I have seen some skills coming back and he seems more focused on talking. We have high expectations for this year and we will support our boy in meeting his annual IEP goals. 

Getting Older

Tommy's little brother is getting older. He is a month and 4 days old! We have observed how Tommy is beginning to accept the baby. One day, Tommy came where the baby was and give the baby a kiss on his head. Other day, Tommy was really quite at the leaving room so Adam went to check on him and Tommy was gentling touching the baby's arm.  A couple of occasions Tommy has handle the pacifier or the baby bottle to me by his own inactive without prompts.

Yesterday, Francis has his first bath. It may be a little late. But his belly bottom took a while to completely dry off. I was also waiting on daddy to be at home because little moments like this one are the ones we enjoy the most. Tommy, mommy and daddy had fun giving Francis his first bath. But Francis had a hard time. What a difference when Tommy had his first bath, he was like a ducky ready to get into the water. I am glad we are weakness of the marbles God can do and it makes be thankful that we didn't miss anything with Tommy as newborn, we enjoyed him as we are enjoying Francis.

Tommy was laughing at Francis when he began 

to cry. It seems he truly understood what was going on.

Building Muscles (Part 1)

After  Tommy was realized from the hospital back in February, we were extremely glad to have him at home again. With the coming days, we realized that RSV didn't affect just our boy lungs, but also his development. He lost many skills he was mastering or about to master, so we had to star over. It haven't been easy this time for me to keep up with all therapies due to I was pregnant. I felt exhausted because I have Insomnia since I was 2 or 3 months pregnant. So I feel the guilt of not helping Tommy as I used to. Now that I am in maternity leave, I keep working on helping Tommy to recover his physical strength every time I can or I try do it during his daily routine. Tommy lost a lot strength in his muscles so we are working on "Building Stronger Muscles" by incorporating new activities. I have also realized, more than ever before, that nutrition plays a huge role on how to help our kids with low muscle tone. So I have been searching for ways to strength Tommy's muscle from inside his body, as he would be an athlete, to get a better body's performance. This has brought me to learn more about nutrients and supplements to empower his muscles.


Tommy and I are working on squatting exercises. According to wikipedia.org, "the squat is a compound, full body exercise that trains primarily the muscles of the thighs, hips and buttocks, hamstrings, as well as strengthening the bones, ligaments and insertion of the tendons throughout the lower body. Squats are considered a vital exercise for increasing the strength and size of the legs and buttocks, as well as developing core strength."


Instead of a Water and Sand table, we are using water and sand little swimming pools. Tommy squats every time he picks a toy from the pools or stay in squat position while playing with the sand toys. I encourage him to pick up the pit balls from the floor and  threw them in the water so he squats multiple times. While he threw the balls we also count from one to ten. 

In the picture below, Tommy took 

his sand toys and placed one by one 

in the water while I was counting. 

Other way we are working on squats is by sing the song "Turn around." This is a great way to combine singing with vigorous exercises. Singing is something Tommy enjoys the most. Honestly, I think Tommy he will have fun playing any sport when he gets older, but he won't be an athlete. Gross motor is not his strength.  But he may be a musician because I had to hide all his musical instrument toys otherwise he won't interact with other toys. Tommy began to hum songs in between 18 and 24 months old, but he is now incorporating actual words while he sings. He even sings "Daddy, Daddy, Daddy" by his own inspiration. So I am incorporating music and singing in everything Tommy and I do together.

Turn around

turn around,

touch your toes,

touch your toes.

Do a little jumping,

do a little jumping.

Squat real low.

Up we go!

Sing this song to the tune of "Frere Jacques."

 Follow the actions in the song.

One Little Monkey doesn't fall out of his bed

Expecting the arrival of Tommy’s baby brother made us think of moving Tommy from his convertible crib to a bed without a rail. I knew Tommy was ready to sleep without the rail because I forgot to put the rail at night a couple of times and he didn't fall out.  With the new baby, we also needed to set Tommy's crib again for the baby.

September 12, 2010

Tommy's transition from a crib to a toddler bed was an smooth process that we started last year when he was 2 1/2 by transforming his crib into a toddler bed –Tommy's crib is is  a 3-in-1, this means it is a crib, a toddler bed and a full bed. I think having a convertible crib made the transitioning easy for Tommy because it helped him to develop spatial awareness in relation with the space available  for his body in the bed. When we decided it was time for Tommy sleeping without the rail, we also decide to create a whole new room for him, which is more appeling for a preschooler. So we bought new furniture for his room, including a new bed. But at the time to chose a bed for Tommy, we chose a toddler bed because it will be the same size of his crib so he dind't have to adjust to a new size bed and it is lower than a regular bed so if the little monkey fall out, he won't bump his head. Tommy's crib was a gift from my mom to Tommy, her first grandchild, so we are planing to transform Tommy's convertible crib in a full bed when Tommy needs a bigger bed and the baby grows out of the crib. This is other reason we didn't bought a bigger bed for Tommy. 

Making the decision if Tommy was ready to sleep without the rail made me think how kids learn not to fall out of bed. I realized it has to be with their relationship with space controlled by the Proprioceptive system, which alerts the body about its location within its physical environment so the body develops spatial awareness that comes naturally to most children while they explore their surroundings as they get mobile by learning to crawl, walk, run, climb; but it is not always the case for kids with a genetic disorder. Even although the spatial awaresness hapends natural in a child development, there are ways to help our kids to develop spatial awareness, specially if they have developmental delays.

• To develop body map by encouraging the child when begins to be mobile to climb under tables or go through tunnels, into cardboard boxes, and any fun place to hide. We bought for Tommy's birthday a play station with has different size tunels connected and he also got a little tend.
• To discuss locations by talking about where the bedroom is, where the bathroom is, where the kitchen is, where his or her toys are and so on.
• To mention which objects are closer and which objects are farther from a child’s current location to give them the idea of distance between them and the objects.
• To teach positional words, which is also a way to work on language development. Examples of positional words (prepositions): up, down, behind, in front, around. A good reference to teach positional words is available in http://downsyndromecentre.ie/advisorypanel/2010/jun/21/teaching-prepositions-positional-words-real-life-c/
• To give directions using "right" and "left". I am reading the Book From Head to Toe by Eric Carle and emphasis body movements to the right or left. I am also learning with Tommy the Hockey Pocky song to practice right and left. 

Even although, Tommy didn't have trouble transitioning to a bed without a protective rail, I am working on promoting spatial awareness because it will help him to be more aware of his surroundings at home, school, playgrounds and so on.  

My Little Monkey doesn't fall out of his bed
He gets all around the bed, 
but doesn't get beyond the edges. 
I have been checking on him at different time
at night since the first day he slept on his new bed.

 July 11, 10:36 PM

July 12, 1:48 AM

July 15, 1:48 AM

July 17, 9:13 PM

July 20 1:03 AM

July 20, 8:56 PM

July 21, 10:23 PM

July 31, 10:27 PM

A new addition to our family

We are so happy to announce that our baby boy, Francis Steven, was born on July 12th at 9:59 am. His weight was 7.25 lbs and his height was 19.75." Believe it or Not! He was born in his due date, so did Tommy.

We have a Super Newborn because he just cry to let us know he is hungry or it is time for diaper change. He falls asleep on his own, he doesn't need to be rocked. He wakes up twice at night, so I can still have some rest. The best of all, he is adorable!

We are adjusting from being a family of 3 to a family of 4. I am trying to fit Tommy's schedule with Francis's so I can dedicate time to Tommy's therapies. Tommy is experiencing some jealousy, but he will get over with time. Sometimes, he gets into a corner to quietly cry when we are with the baby, so we comfort him right away and make him to be part of what we are doing and he feels better after he helps with the baby.

My Little Patriot

Every American should be proud of beign born in the USA. Every American should be proud of every symbol that represent who you are as a Nation. The older generations have done many scarifies to make this country the nation is today. 


Being American is part who my son is regardless his diagnosis. Two weeks ago, we went to our local Home Depot store and they had an American flag displayed near to the main entrance. Tommy walked right straight where the flag was and pointed at it because he recognized it from last year when we celebrated the 4 of July by teaching him 2 national symbols and 2 presidents. He still remembers them when I show the flash cards to him.


Days later, I was getting baby stuffs from the basement to start getting ready for the arrival of our new baby boy. I didn't realized that between the stuffs there were 3 flags (Panamanian flag, Irish flag and American flag). Between the three flags, Tommy chose the American flag and spent the whole evening waving the flag. I tried to put it away from him because I didn't feel confident with the thin flag pole because he could poke one of his eyes out, but he got mad. So I respected his desire of keeping the American flag, after all, the flag represents part of who he is. He ate with the flag in front of him; he went to take his bath with the flag, but this time he allowed me to put it on the sink before getting to the bathtub; he brushed his teeth with the flag in one hand and the toothbrush in the other one; after this, we went to his room to get ready for bed. It was challenging when a said "you can not sleep with the flag" and tried to take it a way from him. So I told him, "you can have the flag for a little while, but the flag will sleep close to the lamp because the flag will watch over you. The flag will be right there in the morning waiting for you." I am not sure if he understood, but he didn't cause a fight after I took the flag away. When I open the door of his room the next day thinking he was still sleeping, Tommy was already awake waving his American flag.  

Happy Independence Day!

Vote for Johann Landkroon, a Taekwon-Do student with T21 to demonstrate Special Needs Taekwon-Do at the Opening Ceremony of the Taekwon-Do World Championships

Nineteen-year-old, Hohann Landkroon has been invited at the Opening Ceremony of the 2011 Toekwon Do (TKD) World Championships in Pyongyang, DPR Korea on September 8th. He will demonstrate his learning, discipline and the benefits of TKD to help other people with special needs. It will be the first time in the world  a 'special needs' student who has Trisomy 21 will participate in an event that has been exclusive for 'typical people.' But to make this happens, Johann has to win the AMP Scholarship to pay for the expenses to travel to North Korea or raise enough money trough donations to the North Korea Fund manage by Hawkes's Bay ITF Tae Kwon-Do School where Johann takes his TKD classes. The estimated cost is $15,000 and the Hawkes's Bay ITF Tae Kwon-Do School has just raised $5,000. Click here to read more in detail about the expenses.

Johann is the best  example of "We have to give our kids with T21 the opportunity to try and they will astonish the world." He just started TKD 4 years ago, and has made an enormous improvement in his physical and cognitive capabilities. Click here to read more about Johann's profile. If Johann makes it to the World Championships in September, he will send a powerful message to the world that making a great effort to achieve a better yourself, regardless if you have special needs or not, is the best life's lesson one can learn.

"I want to be the first person to represent Special Needs Taekwon Do at the Opening Ceremony of the 2011 Taekwon Do World Championships."

"I can't wait to go to Korea and show the world what special needs people can do. Thanks to supporting me. I can do anything!"

~Johann Landkroon 

Johann needs your support to win the AMP scholarship by 'people's choice.' To vote for Johann visit Johann’s page on the AMP People’s Choice Awards website, and click on the orange ‘Vote for me’ button on the top left of the page and you can see above the photo of Johann. Voting closes on 17th July, 2011. Only 15 days to go.

Tommy "The Explorer" enjoys Chicago

We did a short family trip to Chicago City last weekend. We went to celebrate the wedding of my husband's cousin. All the family was there and we all have fun including Tommy. We decided to take Tommy with us because he is so used to be with mommy and daddy that we didn't feel confident left him because of the sensory issues, which is cousing a little of trouble for him to adjust to new people and situations. Tommy alsoenjoys trips to big cities and he always behaves and is very cooperative when we have taken him in family vacation to big cities. 

Tommy looking at the car and saying very loud "car."

Even although Tommy has sensory issues, the noises of the big city and looking at many cars moving around get him very excited; what makes me think, he gets a lot of sensory in put from them helping him to relax and enjoy. We will figure out more about Tommy' sensory issues in the coming weeks and I will post about it. But for now, we are so glad we took him with us and happy we spent time together as a family, which is not very often due to my husband's job.

We had time to enjoy Chicago City and we took Tommy to the Shedd Aquarium. Tommy's face lighted up as soon as we got into the showroom. He began to say and sign "fish." He was amazed with every fish he saw at the aquarium as any other child we saw over there.

 

Tommy enjoys any animal with 

fur or scale, it doesn't matter!

Tommy "the explorer" looked astonish with the outfit he wore for the wedding. He enjoyed the cellist playing during the wedding. He was amazed for the violin! Tommy has developed a natural preference for music and enjoy any type of musical instruments. 

 

 Tommy is growing up! 

He is not a baby anymore, 

he looks like a big boy with his outfit.
Daddy was so handsome, too! 

 I am very excited for my husband's causing and his wife who did a great job in organizing the weeding to make all his guests comfortable, have fun and enjoy the wedding. Both families and all the guests at the wedding had a good time! 

It was amazing how Tommy overcome his sensory issues and he got integrated in all weekend family events by running behind other kids, eating at the table in a big chair during the rehearsal dinner as a big boy, enjoying the photo-booth that was at the reception to create a photo album for the bride and groom, greeting with "Hi" and "Bye" to people, following directions, specially, when I couldn't hold his hand and I told him "follow daddy" and he ran behind diddy trying to catch up and looking for daddy when he didn't see him. Washing him enjoying just the small things like crossing the street by holding our hands and running as fast as he could made us so happy.

Tommy ate at the table on a chair for big people 

(No booster seat)

Tommy enjoyed the dressed up accessories 

to take pictures at the photo-booth.

Tommy had two occasions were he struggle with his sensory issues. One was when we took him to Shedd Aquarium. We took him to the Belugas' show and we completely forgot "he doesn't like when many people clap." So it was too overwhelming for him and he began to cry. So we comfort him and staid on our seats and told him people will be clapping because people were happy to see the belugas. He calmed down and enjoyed the event. But we could tell he got a little responsive when he heard people clapping. The second time, it was during the wedding when the groom and the bride were walking down the ale and people began to clap, but this time we helped him to to anticipate the clapping noise by telling him people will clap because they were happy for the groom and bride. So he calmed down and didn't cry.  We sat closet tho the cellist and I think it helped a little because music makes Tommy relaxed, so it was perfect even the spot were we sat at the wedding. We all had a good time!