Monday, December 26, 2011

¡Feliz Navidad! Merry Christmas!

May this Christmas had been a time
of joy with your family and friends.
Merry Christmas!

We have a peaceful, joyful, relaxing and fun Christmas. We were looking for it after having a rough year with worries, stress and difficult moments from start to finish of the year. Not matter what, we are a stronger family full of love. Having our second child has been the most grateful moment we had this year. He is adorable and funny. Watching our boys growing up and learning to be bothers is a joy.









   





¡Feliz Navidad!

Getting older

Wow! I cannot believe I am 5 month old. I am 80 percentile for my height and 47 percentile for my weight. I am good size baby! But I have to tell you, my bother was taller and heavier than me at the same age, so he is teaching me stereotypes are breakable and I should believe in myself.


I am a busy baby because I am doing a lot of things. I am working on eating solid food; I have mastered my cereal, so I am in the adventure of tasting vegetables. In my last post, I told you that it seems I am two months ahead of my age. Well, my pediatrician told my daddy the same thing in my 4 month check up. My pediatrician told my daddy I was doing things for a 6 months old baby, when I was just four months. I keep doing things ahead now that I am 5 month old. It seems I am ahead in my overall development. So my mommy and my daddy are very proud of me. They know how blessed I am!


Eating my cereal for the first time
Nov. 24, 2011


Practicing finger paint
I was trying to eat, but suddenly everything 
was a mess and I began to play with the food.
Dec. 4, 2011


Some of the milestones I have reached ahead of time are:

  • To mouth objects - 3 months
  • To respond to my name - 31/2 months
  • To raise my arms to be picked up - almost 4 months (But my daddy thinks it was before because my daddy took me to a meeting with his coworkers when I was about 2 months old. In the meeting, my daddy's coworkers told my daddy I was raising my arms for him to picked me up. My daddy has told my mommy he saw me raising my arms before the meeting, but my mommy don't believe us!)
  • To play with toys in the activity center - 3 1/2 months (I wasn't batting toys anymore, I was more interesting in standing, sitting and grasping toys. So my daddy got me the Baby Einstein ExerSaucer. I could play on it, but there was one problem, I couldn't reach very well. So my mommy told my daddy we could wait a few weeks for me getting taller. They did, when I turned 4 months I was able to reach better)
  • To sit without support for a few seconds - 4 months. Currently, I use my hands to catch my-self and stay for longer periods of times without support. 
  • To get in four point position and scooting backwards - 4 months. Currently, I am getting in 4 points and rocking, so I will be crawling soon. 
  • To push to stand while I am on my mommy's laps - 4 months. 
  • To start experience separation anxiety - almost 5 months
The following speech milestones can be accomplished when a baby is by the end of his or her six month. But it seems I am a little ahead, too: 
  • To star babbling. My mommy is hearing some speech sounds: a, ai, ba. Over the weekend, I began to repeat the speech sound "ba" after my mommy.
  • To make gurgling sounds when playing with my mommy or when I am alone
  • To move my eyes in the direction of sounds
  • To notice that some toys make sounds
  • To pay attention to music

Seating for a few seconds without support
Nov. 12, 2011


Standing in one of my ExerSaucers.
I use My brother's ExerSaucer when I am upstairs
Nov. 14, 2011

Seating up on my swing chair
I have felt from this chair or I have been hanging form it. 
So I don't use this chair anymore because it is not save for me.
Nov. 14, 2011

Playing with my Baby Einstein ExerSaucer
Nov. 14, 2011

My mommy feels the guilt that she is not stimulating me enough because she is trying to help Tommy to overcome his developmental challenges. As a good mommy, she worries! I am fine, I learn by washing them because I pay a lot of attention. I enjoy so much being around my big brother. When is meal time, I like to seat at the table with my big bother, I watch him very closely and I try to eat all my food as he does. We have a game that we named "Hugs," we hugs at each other and we laugh and giggle. I pull his hair or he pulls my hair sometimes, but we are learning to love each other. 


Rocking back and forth
I having rocking back and forth for about two weeks
so I am getting ready to crawl.

Thursday, December 15, 2011

Thank you from the battom of my heart

"I promise I will never let you down. I won't rest until you reach your full potential. I promise I will do everything to change the world for you. If I can change one person's mind about Trisomy 21, I will change the world for you."  October 31st, 2007 around 11:00 am. My promise to my son Thomas Aidan Lane

Until today, I haven't rested in finding ways that can help Tommy to reach his full potential. I don't put him in the box of stereotypes. I don't expect less from him because he has a genetic disorder that slows his abilities. He always shows me that inside him there is more potential that what we can imagine. When I was so emotional because I couldn’t understand why all his regressions, he began to ride his bike (trike) effortless. Completely, the opposite of what I was told. Tommy with this action, one more time, showed me the sky is the limit. So I stepped up for him and I have left behind my emotions. I am armed with a team of professionals, new toys for his therapy play, new ideas to make learning fun, an unconditional playmate (his little brother) and a wonderful family who will be beside us not matter what. This is the beginning of the Chromosomal War II. If you missed Chromosomal War I, here are the links:


Raising a child with a genetic disorder has more challenges than raising a child with a typical development. But unconditional love is all about; if you truly feel LOVE the rest comes easier: 

1 Corinthians 13
The Way of Love
1If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal.2And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. 3If I give away all I have, and if I deliver up my body to be burned,a but have not love, I gain nothing.
4Love is patient and kind; love does not envy or boast; it is not arrogant 5or rude. It does not insist on its own way; it is not irritable or resentful;b 6it does not rejoice at wrongdoing, but rejoices with the truth. 7Love bears all things, believes all things, hopes all things, endures all things.
8Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. 9For we know in part and we prophesy in part, 10but when the perfect comes, the partial will pass away. 11When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. 12For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.
13So now faith, hope, and love abide, these three; but the greatest of these is love.


I admire my son instead feeling sorry for him. People may think he is in at disadvantage situation in this world, but the trust is he is up high and away from us, so we have to wait and see:


Matthew 19:23-26



23And Jesus said to his disciples, “Truly, I say to you, only with difficulty will a rich person enter the kingdom of heaven. 24Again I tell you, it is easier for a camel to go through the eye of a needle than for a rich person to enter the kingdom of God.” 25When the disciples heard this, they were greatly astonished, saying, “Who then can be saved?” 26But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” 27Then Peter said in reply, “See, we have left everything and followed you. What then will we have?” 28Jesus said to them, “Truly, I say to you, in the new world,b when the Son of Man will sit on his glorious throne, you who have followed me will also sit on twelve thrones, judging the twelve tribes of Israel.29And everyone who has left houses or brothers or sisters or father or mother or children or lands, for my name’s sake, will receive a hundredfoldc and will inherit eternal life. 30But many who are first will be last, and the last first.


I have been busy trying to understand what was happening to Tommy; why he was regressing in his development; how I could help him by stopping all these regressions; Calling to the medical community to find answer to my questions. While all this chaos was happening, my mother-in-law and my father-in-law were organizing a Trivia Night to raise money to pay the medical bills we got due to the hospitalization and the private paid services Tommy is getting. The Trivia Night was on November 18, 2011 at 7:00 pm and it was a successful event. My mother-in-law did a wonderful job organizing this event. Her friends and family members help her to put everything together. That night, we were very impressed about how well organized the event was. The people’s respond was amazing, that warms my heart just to remember. Thanks to them we have a relief in our shoulders, the best of all, the treatment to help Tommy with his regressions and sensory issues will be able for him without worries about not being able to afford them. Since I received the positive results that my first son had Trisomy 21, I have been praying for strength and wisdom. I have also been praying that God put the right people in our path who believe in our son's potential. God listened to my prayers and I was able to experience it in the Trivia Night!

Since the middle of September until today, we have been working hard to help Tommy be the child he was before. It is beginning to show good results. I am hearing from people at school and extended care telling: he is getting engaged, he is socializing, we are seeing progress. So I can just say from the bottom of my heat:

THANK YOU to all of you who support my son in the trivia night. THANK YOU to the estrangers who donate money for the trivia night without knowing Tommy. THANK YOU to the School District, Tommy’s teacher, Therapists, Extended care staff for your dedication in helping Tommy.
THANK YOU to our families, friends and coworkers who support us in our journey of raising Tommy.
THANK YOU to your support, I will be able to continue my plan of action for Tommy to reach his full potential. He is an amazing kid that has the natural ability of unifying people.
THANK YOU FROM THE BOTTOM OF MY HEART! 



Friday, October 28, 2011

31 to 21: Play to win (Part 3)

The Cardinals won! They are the CHAMPIONS. The joy and the emotions are hard to describe. I heard people saying if the Cardinals wouldn't won tonight, they will still be champions because of the historic game yesterday night. The Rangers are a great team and they didn't made it easy for the Cardinals. I think they should be proud and come back next year as the DINAMIT team, as David Freese referred about them. The Cardinals showed the result when you believe and NEVER GIVE UP. So I belive in my son's potential and I will never give up on him. I will be fighting for him to reach his greatest potential.
GO CARDINALS!



31 for 21: Play to Win (Part 2)

Reporting live from the Ortiz-Lane Residence... Oh my Goodness! I am just with the kids, but we are going crazy here with the World Series Championship. I am taking advantage of all the emotion of the game to do sensory stimulation with Tommy. He is needing sensory input right now because this week his sensory issues have been more challenging that what I have seem before. I am doing a lot of music (maracas, tambourines, drums, etc), jumping and bouncing that goes along with game. I will try to take pictures of or craziness here, but it may not be possible because Francis has to Sleep. Soon, I will have to take Tommy upstairs because it is time to go to bed. He will star his first dance class tomorrow morning.

Thursday, October 27, 2011

31 for 21: Play to win!

We cannot be more excited in our family due to the baseball game tonight. Our favorite team, The Cardinals. Our favorite player, Albert Pujols, He has a daughter with Trisomy 21. I had the opportunity to meet his wife and his daughter at the beginning of this years because of The Albert Pujols Family Foundation. Pujols and his family are committed to the families with a love one with Trisomy 21. So I just can wish the best to the Cardinals, which are a huge supporter of the Down Syndrome Association of Greater St. Louis. WHAT AMAZING GAME! We are ready for game 7.


GO CARDS! GO CARDS!

Tuesday, October 25, 2011

31 for 21: Listening Center

"Sensory processing is a term used to describe how the seven senses of the body are processed by the nervous system. It is the nervous system to perceive sensory information, process it, and produce a response. When sensory information is perceived by the nervous system, the brain must determinate what sensation is and if it is "okay". When the nervous system has difficulty accurately identifying information or if it interprets that information as being "no okay", then a child may react in a manner that seems disproportionate to the circumstance. The child may avoid sensory experiences, or may seek additional sensory experiences..." (Leaps and Bounds, Sensory Center).


In Tommy's case, he is under and over responsive to sensory information. He is over responsive to auditory information. This is the reason he cannot hear a crowded talking, clapping or laughing. These noises disturb him and he panics, but if I am with him I know how to clam him down. What I do is to explain to him why people are doing those noises, and it seems he understand what I am saying because he looks around like it make senses what I am saying and he doesn't cry. This make me think he is learning to control his sensory issues. I cannot say that Tommy's has sensory issues caused by a noisy environment because he loves to be in big cities. What I have observed on him is that noises coming especially for a group of people is what disturbs him.

I am always searching for ways to help my son to reach his full potential and overcome his developmental challenges. This how I found out about headphones as helpers for kids with auditory sensory issues. So we bought the "Caliphones" because they are inexpensive and cute. We took my husband old iPod and uploaded most of Tommy's favorite songs. I tried them yesterday in our way home. I observed Tommy's response and this is what I observed:

  • Tommy's sickness for visual input decreased while wearing the headphones.
  • His repetitive tongue movement wasn't present during the way home.
  • He didn't need oral stimulation.
  • His mouth was nicely close.
  • He didn't grind his teeth.

This headphones are for kids from 3 to 10 years old. They have volume control, slotted baffles to protect against accidental perforation on the internal speaker and ambient noise-reducing ear-cups.

After my observation, I  hostly think that Tommy's sensory issues are not that sever and he will overcome them. We just have to work on it and he will shine like a rock-star.



31 for 21: All in a day's work

Today, Tommy has a little accident at the playground. Tommy hasn't have too many little accidents like this one. He has had just 3 band aids, including this one, in his 3 years of life. Tommy felt off the tire-swing while trying to get off. He scratched the inside of his left eye and cheek. Well, It is "all in a day's work" for a 3 year old who is exploring around regardless his diagnosis.

Sunday, October 23, 2011

31 for 21: My teenager in a preschooler body

Today, Tommy didn't want to hang out with us. So he went upstair, shot the door of his room and lay down in his bed with his buddy Elmo. This made me think how it will be when he is a teenager. We are so attached to him that it will hurt us seeing Tommy preferring chatting and spending more time with his friend than with us. But at the same time, this is what we look for.

Saturday, October 22, 2011

31 to 21: A dream come true

It is amazing watching Tommy going around with his trike. I never thought it will be that fast. It seems every time he rides his trike, he improves his riding skills. He just have to work on steering the trike, specially in the corners. We never worked on keeping his feet on the pedals or teaching him how to stop the trike, he just knew. I remember the first time Tommy rode a tricycle in Wall-mart Sport Department. I pushed the tricycle and Tommy just followed the pedals movement without struggles. I commented it with my mom and she told me: "You will see, he will learn to ride the tricycle very fast." My mom was right! When she said that, I smiled because I have the book "Gross Motor Skills for kids with Down syndrome, which explains the process how to teach our kids to ride a tricycle. I have also hear from therapists and parents how hard this is for our kids.

Tommy has exceeded our expectations
one more time.

I searched for many bikes before making the decision what bike will be appropriate for him. So I found adaptive bikes in adaptivemall.com, but they are too expensive. One day, I went to Toys R Us and found the Huffy Hi low Trike with a very similar design to the ones that are sold in adaptivemall.com

Huffy Hi-Low trike features:
This bike benefit any child who is learning to ride a tricycle, regardless if it is a child with developmental challenges or a child with a typical development. I think the most important feature is the Huffy pedals 'no slip grip.' Because they child will gain confident right from the beginning, so he or she will be more than willing to ride the trike over and over again. 

According to the huffy.com, this trike has 3 important stages:

• Strider. By holding onto the Strider handle, your child balances while walking behind the Hi-Low Trike.

High Rider. Your child learns how to pedal the Hi-Low Trike! The Steer Straight™ Technology and convenient Strider behind-the-seat handle make teaching easy.

• Low Rider. As your child gains confidence, the trike easily converts to the low rider position. It’s faster and more fun when your child is ready!

31 for 21: A milestone day for my boys (Jumping and Rolling)

Wow! My boys have accomplished the same day two important gross motor milestones. Tommy has been very focused on jumping. Last week, he discovered he could try jumping form the coffe table to the couch. So he has been practicing until today because he JUMPED. My husband and I could witness this moment and we were very excited for him. We know that he cannot take his gross motor skills for granted. He began to attempt to jump a year ago. His mind was ready, but not his body. He still has to practice more to improve his jumping skills. But it was amazing seen him getting in his tiptoes and jump. On the other hand, Francis began to roll over since last week, but we couldn't see it because we were not at home. He rolls over in both directions back to Tommy and Tommy to back. He still struggles rolling over tummy to back. I I just wish I could film it. My video camera had the battery too low.

Thursday, October 20, 2011

31 for 21: Tommy's Speech (Part 2)

I am very proud of my boy! His Speech therapist thinks that Tommy's speech is advanced for his age. She mentioned in our conversation that many typical kids the same age than Tommy don't have all the Speech sounds Tommy has. If a child don't have all the speech sounds before seven, there is nothing to be worry about it because it is considered in the 'normal' range. Thinking in her words, I remember it is not the first time I have heard or realized this. I think Tommy's advanced speech is due to many factors, but the most important factor is that he has been blessed with the ability of "imitation" that opens the doors for learning.  This a skill we discovered in Tommy since he was very little.

When he wants to say a new word, he deeply focused in the person's mouth. He looks very focused at the lips movement and he mimics the movement of person's lips. People that knows Tommy knows he likes to practice his speech sounds in front of the mirror. When there is a word he cannot say, he practices that word for days, weeks and even months until he can clearly say it. It is something he enjoys!

Factors have influenced Tommy's speech
  • Being raised in a multicultural environment where he hears two languages, English and Spanish. For example: For a monolingual child the sound for the letter "l" is just "l", for Tommy is "l" and "elle."
  • Being exposed to listening to different languages, such as: Native american, Chinese, Russian, Portuguese, French, German, Hebrew, Japanese among others. It is not for him to learn the language, it's to train his mind to differentiate the sounds. 
  • Listening to letter sounds since he was a baby. When Tommy was a baby, I used to say all the Spanish vowel sounds just for him to listen. When he was getting older, I added more sounds. Specially, the sounds that are commonly hard for a child with Trisomy 21, such as: f, l, r, s, v, x and z. Here a video of Tommy doing the Spanish "R" sound when he was a baby. The Spanish R sound wasn't teach to Tommy, he picked it up by just listening to me talking in Spanish.
  • Learning the short sounds of the alphabet with the Zoo-phonics. Tommy does most of the short sounds for the alphabet. Lately, I have heard him clearly saying the letter "Z" short sound. 
  • Learning to use a straw cup, as well as, blowing bubbles at a very young age.
I never thought this will help Tommy to have advanced Speech sounds, I just did it because I want to exposed him to the speech sounds so it could help him with his speech intelligibility. Some how it is working because I have heard several comments of people that they understand what he says.

Related Articles:
Our art of language -Learning the alphabet

Sunday, October 16, 2011

31 for 21: High Expectations (Part 3)

At the beginning of the past summer, Tommy pretended to play "Office" for about a month. It was so cute watching him everyday after we came back home climbing to the chair and pretend play working on the computer and writing. It is what he sees when I worked from home. So he may follow my foot steps in the graphic design field because it is what he has been seeing since he was a baby. Always playing beside me while I am working. This pictures warm my heart and make me stronger in keeping my high expectations for him.





My little disigner

31 for 21: Cutting with scissors

This year have been a rough year for us. I am more exhausted than ever. So I haven't been very focused on Tommy's therapies as I used to do. This make feel the guilt of not doing enough to help my son; but at the same time, I feel Tommy needs a break sometimes. After all, he is a child!

I am getting inspired again in this month, as my way to create awareness and showing how capable our kids can be.  I am ready to help Tommy with all those milestones he was ready to master before getting sick. One of this big milestones is to independently cut with regular scissors. Currently, Tommy can snip with adapted scissors with guidance. He is able to hold the paper with one hand and cut with the other hand. He does about two or three cuts by himself. We are also working with him to learn holding the scissors by himself.

Necessary Adaptations for Tommy successfully snips

  • Using advertising cards that come in the mail and construction paper. I sort different paper thickness. I have grouped them by thin card stock, thick card stock and heavy card stock. This allows me add complexity in the activity. I have realized that thick and heavy card stock are harder for Tommy to cut, which creates frustration. So we are working with think card stock and construction paper for now. Using advertising materials is a way of showing Tommy the real world. Before cutting we look at the cards and point to letters, numbers, photos, and them some. It is a good way for language reinforcement.
  • Making sure Tommy sits properly. I have put a step stool underneath the table so he can rest his feet on it. otherwise, his feet would be hanging that will create instability and will make him worried about his sitting position that will cause loosing his focus on the task. 
  • Keep the activity short from 2 to 3 minutes and make two or three reputations through the day. 
  • Use several adapted scissors to generalize the idea of cutting and find the scissors Tommy feels more successful with to avoid frustration.



Cutting advertising postcards are more exciting for Tommy
than cutting other paper material, such as: 
greeting cards or blank card stock.
(It may be from mommy's graphic design genes, ha, ha, ha).


Friday, October 14, 2011

31 for 21: A bond that last for ever

My boys are beginning to enjoy each other after a rough start. It was hard for Tommy having other child at home. He pooled the baby's hair, scratched his leg, tried to threw the baby away of  his bed. He still gets sad once and a while if daddy is paying too much attention to Francis. But things have suddenly change. Several times, he has handle me the baby bottle without me requesting his help. He tries to comfort Francis when we are busy and cannot get to see Francis right a way. So Tommy has made up his own way to comfort his little brother. When Francis cry, Tommy runs towards him and puts his finger for Francis to suck (it works, ha, ha, ha). This evening he decided that it was time to feed his little brother, so he took a little bottle that looks like a baby bottle to feed Francis. I could take a picture of this priceless moment. Francis enjoys so much having Tommy around. He smiles at Tommy and suck Tommy's fingers without complain. He follows Tommy across the room with his eyes. I am sure Francis will be Tommy's best fan.

A bond that will last for ever.
For Tommy and Francis brotherhood 
is all what matters, regardless Tommy's diagnosis.

Down Syndrome: Attitudes and Expectations

I have never seen before a doctor dominating the topic about Trisomy 21 from the medical and family stand-points as Dr. Brian Skotko, who is not a father of a child with Trisomy 21.

"Dr. Skotko has dedicated his professional energies toward children with cognitive and development disabilities. He is one of the specialists in the Down Syndrome Program at Children's Hospital Boston. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School. Dr. Skotko recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s "On Point," and ABC’s "Good Morning America." Dr. Skotko serves on the Board of Directors for the Massachusetts Down Syndrome Congressthe National Down Syndrome SocietyBand of Angels Foundation, and Lettercase. He further serves on the Professional Advisory Council to the National Down Syndrome Congress."

Dr. Skotko is the best proof of how a child with trisomy 21
can changes others people's life for better and ever.
If you want to know more about Dr. Skotko,
please visit his website at:
http://www.brianskotko.com/index.php

Thursday, October 13, 2011

31 for 21: High Expectations (Part 3)


Tommy's art work
A designer by nature ; )
I get excited every time I get Tommy's artwork from school.

when we got the news 3 years ago, we didn't know 
how far he could get. But we never doubt about his potential.
We don't know what he will be doing 20 years from now.
But during these 20 years to come, we will nurture his development
to achieve his full potential.

31 for 21: Tommy's Omelet

Tommy is a good eater. He has period of times where he doesn't want to eat much and period of times where he eats a lot, as any other child. The other day he ate three bowls of organic cereal for breakfast. We are blessed with Tommy being a good eater. There are a few foods Tommy doesn't like. Those are egg and avocado. But he ate them in an omelet when we ate breakfast at a local restaurant a couple of weeks ago. So I cooked an omelet for him at home. He ate it! It is a very nutritional omelet, full of good fat which is essential for brain development. 

Tommy's omelet
Ingredients:
4 eggs
1/2 red pepper, chopped in small pieces
Cheddar cheese
1 avocado, chopped in small pieces

Procedure:
Mix eggs, chopped pepper and cheddar cheese. Blend all the ingredients together. Pour the mix in a pre-heated pan, which should previously be oiled with organic olive oil. Once the omelet is done, cut it in small pieces, serves together with the avocado and frozen blueberries in a plate with Elmo's decoration, Of course! 

Wednesday, October 12, 2011

31 for 21: Features associated to Trisomy 21

Why I am going to have a child that won't look like me. When I read this in a online forum when I was expecting Tommy, it hurt me so much because I already loved my baby. I knew for sure he won't look like a monster, regardless the facial features he could get.
The physical characteristics of a person with Down syndrome are not exclusive to them. Those characteristics are also present in the 'typical' population, but not with the same frequency and amount as in a person with Trisomy 21.  Facial features may include, but are not limited to:
  • Flattened nose. Tommy's flattened nose bridge is not exclusive from Trisomy 21. His flattened nose bridge is a heritage from my mom's genes. 
  • Tongue trust. Tommy's tongue trust is not exclusive from Trisomy 21. My sister has tongue trust, but it didn't affected her as is affecting Tommy.
  • Small ears. Tommy's small ear are not exclusive from Trisomy 21. I do have small ears, too.
  • Slanting eyes. Tommy's slanting eyes are not exclusive from Trisomy 21. I also have slanting eyes. I have even heard comments that Tommy's eyes are just like mine.
  • Epicanthal fold (The inner corner of the eyes may have a rounded fold of skin). Tommy doesn't have Epicanthal fold, but my typical son does.  
  • The hands may have short fingers. Tommy's short fingers are not exclusive from Trisomy 21. Tommy's daddy also have short fingers. My sister in law have commented several times how Tommy's hands look just like my husband's.
  • Single palmar crease. Tommy's singles palmar crease is not exclusive from Trisomy 21. Ironically, my husband and I have a single crease. Mine is in my right hand and my husband's is in his left hand. Tommy's single crease is in his right hand like mine.
  • Bigger gap between the big toe and second toe. Tommy's bigger gap between his toes is not exclusive from Trisomy 21. My sister does have a bigger gap between the big toe and second toe in both feet.

Ironically, my son who has trisomy 21 does look like my husband and I. But we are still figuring out whom our typical child looks like. He does look Hispanic, but it is hard to tell specifically whom he looks like. So now, I have an answer for the person who wrote in that forum: Not because my son, Francis, doesn't look like us we don't love him. We know all cells of his body have our genes. As far as he grows, we will know how much he will look like mommy and daddy because of his personality, behaviors, preferences, and them some. I don't think it will be different if Tommy wouldn't look like us because of the facial features link to Trisomy 21.


Doing this post, I realized the pictures 
were taken when both were days 
before turning 3, what a coincidence!
(Look at their hands)



Sunday, October 9, 2011

31 for 21: Tommy's Speech

This year hasn't been easy for Tommy. But regardless all the challenges he is facing, his speech seems to be his strength in the area of communication, according to his current Speech/Language Therapist. Since the middle of May, Tommy speech has increased. He is repeating a lot after us. Once an while, it seems we are communicating. One day, my husband and I were talking during dinner time how much we love our kids and Tommy looked at  both of us and said: I love you!

He loves to sing, and he is incorporating more real words into his singing time (which is all day long). So I am also singing more with him to introduce new concepts and words. Currently, Tommy says about 200 words, but he doesn't use them very often. But it makes very happy when I hear comments from people at school that they can understand what he is saying. The other day, someone told me that she heard Tommy counting in Spanish (uno, dos, tres). She asked him: Tommy, what are you doing? Are you counting in Spanish? and she counted in Spanish and he repeated after her. She was very excited for him, so am I. This person didn't know I am teaching him to count in Spanish and she understood what he was saying.

To help Tommy to increase his vocabulary, I am using signs again because he learns the words faster with the signs. So I am debating if I should get a bigger baby signing time DVD set. Currently, I am using the DVDs we have since he was a baby.  I also put a signing time chart on my refrigerator, so I can remember the signs to talk to Tommy using the signs.

Saturday, October 8, 2011

31 for 21: Our Mission Statement

To keep our perspective what we want for our son's future, I wrote a mission statement I share with everybody involved in Tommy's development. I have a copy of our Mission Statement in our son's EIP file at school. I will share it you today:


Mission Statement:
Our mission as parents is to acquire high quality special education services for our son, Thomas Aidan Lane, that will prepare him with the academic knowledge, skills and standpoints he needs for a future post-high school education. During the period our son is part of the special education program would like to work in conjunction with IEP team, including all professional involved in our child’s education, so we can see Tommy’s communication skills improve so he can openly express his feelings and needs in English and Spanish by sustaining a conversation in any environment that will allow him to be included into the multicultural background he is part of. The academic knowledge in conjunction with the bilingual skills our son can achieve are essential for him to get a paid employment in a field of his choice; therefore, he can life a productive and independent life, to the maximum extent possible. ~ Mr. and Mrs. Lane