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).

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 Congress, the National Down Syndrome Society, Band 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

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! 

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)

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.