La Ventana De Los Cielos

La Ventana De Los Cielos was founded by Venezuelan singer/songwriter Ricardo Montaner and his wife, Marlene Rodriguez Miranda in 2005. This organization is located at the beautiful ranch they bought in Homestead, Florida. The organization helps children with different abilities such as autism, Down syndrome and its endless. They do it through art and animals interaction therapies.

I grew up singing Ricardo Montaner's songs. I currently keep listening to his music trough the iTunes. My favor songs are "Tan Enamorados", "A Donde Va El Amor ", "La Cima del Cielo", "Me Va a Extrañar", "Déjame Llorar" and "Será". He is a great singer/songwriter and a wonderful person who is working for kids with different abilities like my baby boy.

My husband and I would like to plan a family vacation to Florida when Tommy gets older. We will go to Disney World and "La Ventana De Los Cielos". Then, we will have a complete trip without being worried about Tommy's therapies.

Check their website, "La Ventana De Los Cielos" (the webiste and photos are really cool).

Daddy as a Teacher

God has blessed me with a wonderful husband who is funny, loyal, kind, and a great father. Tommy thinks his daddy is the best daddy in the world. His face lights up as soon as he sees daddy. Daddy is Tommy's hero as my father in law is Adam's hero. 

My husband more than a Daddy is also a teacher for Tommy. He is teaching to Tommy how to model, sign and imitate the word "book". Meanwhile, he combines the Speech therapy with the Physical therapy. See the video below (Pay attention because you will heard Tommy saying "Hi dada").

The books my husband is showing Tommy in the video are from the collection Sign and Sing-a-long by Annie Kubler. We killed 3 birds with one stone with these books.  

1. Speech development while we sing and learn the signs. We also say and repeat the word "book".
   
2. Hand Play by including the signs spider, rain, son, teddy bear, sky and light.
   
3. Brain development by crossing the midline while he signs spider and teddy bear. Crossing the midline is important for brain development because it connects the two hemispheres of the brain. According to the book Bright From the Start by Jill Stamm, "the better the connections between its sides, the more smoothly the whole brain is able to work and, therefore, the better the learning of certain skills".

My husband is a great teacher for Tommy. He is not just teaching Tommy about Speech or Physical skills, he is also teaching Tommy to be a good man through the example. Adam is a good role model. I couldn't choose better!

An Unusual Baby Proofing Item

Tommy was barely moving 7 weeks ago. We didn't see so much progress in his gross motor skills for 7 months. I was very worried because his body was getting strong enough to get around according to his PT, but he didn't want to be mobile. Suddenly, He has gone from sitting up on his own while he lays down on his back to army crawling and occasionally creeping to pull up; from pulling up to occasionally climbing in and out the couch without cushions; from standing up without support for a few seconds to cruising on the crib. And then, to Jump out of the crib!

This pass Monday, my husband and I were washing TV and Tommy was supposedly taking a nap. We heard through the monitor he was awake; when suddenly, we heard a noise. I told Adam: "Tommy jumped out of the crib". He said "He is not able to do that". My husband went to Tommy's room when he screamed: "Tommy is on the floor, come to see him." Tommy was playing very happy with his CD collection on the floor close to the crib. He wasn't injured, thank God to my husband! My husband put a air mattress close to the crib because we saw Tommy trying to get out of the crib over the weekend. How he did, we are not sure. But I think he pushed him self up to the rails and then he used his arms to push himself down to the ground and felt on the mattress. The mattress saved him from a serious injured because his head would have received the major impact. The air mattress has become our new baby proofing item. Highly recommended!

His grandpa was baby sitting yesterday and he had to lower the mattress to the lower level because Tommy was trying to get out of the crib again.

What I have heard from my parents and my husband's parents, Tommy is just as my husband and I when we were kids. Our kids with T21 will do things that will exceed our expectations. This is something I didn't read in any book or article about T21 when I was prenatally diagnosed. Our son has taught us that regardless the syndrome, he is just a kid. He is our super hero!

Promoting speech at a very young age

Tommy made my day today after a long day of hard work. My eyes are in tears, just to remember when I heard Tommy saying "thank you" this evening.  Any parent with a kid with a genetic disorder know how it feels. I don't know when I will hear it again, but I know he can do it. 

Tommy's therapies think one of Tommy's greatest skills is communications. We have been working really hard to provide him with every tool that  become him verbal since he was a newborn (and maybe since he was in the womb). 

• We talked to Tommy since he was in the womb. I used to explain to him when he was an unborn baby how it would be to take a bath every morning when I was taking a shower. He enjoyed the first bath. Explain the environment around them help them to anticipate and learn new concepts.
• We taught Tommy to pay attention since he was a newborn. We started with playing music to let him pay attention to sound for long period of time. Classical Music CDs are great to star during sleeping time  (I also put him to listen to classical music in the womb). He has been exposed to many sounds by introducing him to simple instrumental music toys such as: piano, maracas, drum, guitar and any kitchen or house-keeping  utensil that produce a sound. He has a long repertory of music including American Indian music.
•  We also have a lot face to face interactions to promote eye contact since he was a newborn. 
• We started to call him by his name since he was born. He responded to his name since he was about 4 month old.
• We read to Tommy since he was in the womb. I read to him during bath time when he was a newborn to take advantage that he was awaked and very alert. Reading to him is part of our daily routine. Reading increases language comprehension. 
• We promoted gesture since he was a newborn. My husband started to wave "bye-bye" to him when he was a month old. Tommy was about 5 month old when we saw him for the first time waving to daddy. He mastered it when he was about seven month. He currently initiates waving to estrangers on his own at his 18 month, which is an indication that his expressive communication is progressing. 
• Turn taking is other way we have used to encourage speech. A great activity is to play with a ball and a car toy throwing the ball to the baby back and for.  "High 5" and "down low". is other good way for gesture and turn taking. We taught Tommy "high 5" and "down low" when he was 9 month. He currently initiates those gesture own his own, too.
• Label objects and people by pointing. Tommy's pointing skills with index finger started to emerge when he was about 15 month. Before he was using his open-hand as a gesture to point at pictures once an awhile.  
• Speech evaluations to monitor speech and oral motor. The first Tommy's Speech evaluation was at 6 month old. We didn't have concerns, but we wanted to monitor his pre-speech development.  The second evaluation was when Tommy was 8 month old. This evaluation showed he had mild delay in oral motor skills and a mild delay language comprehension and language expression. Because of this evaluation we realized I was focused in teaching him more Spanish than English. We also realized we should improve our playing skills to expose him to new games and toys.  We hired a private Speech therapy for this evaluations. Because of this evaluation I requested Speech therapy through the EIP, but it was denied because his Pragmatics skills were in the 9-12 month level and Gesture skills were emerging at the 9-12 month level when he was 8 month. Pragmatic language is the area of language function that embraces the use of language in social contexts (knowing what to say, how to say it, and when to say it, and how to "be" with other people). Our last evaluation was when Tommy was 13 month because I observed lack of expressive communication, even although he was saying "mama", "dada" and "hi"; He was also signing "more" and all done". But he wasn't combining gesture with pointing! We took him to Sensory Solutions  (We highly recommend their services [excellent therapists, great equipment and affordable price]). The evaluation showed that Tommy's receptive language was in the average range, but his expressive communication was delay. We started private services with Sensory Solutions and we are seeing the results today (We started Speech therapy once a month through the EIP 2 month ago).

Currently, we are teaching Tommy to read by using the first kit of the Love and Learning program. I also know other two programs that have been designed to teach children with Down syndrome to read. Those are:  eRedingpro and See and Learn Language and Reading. According to the article Reading and writing for infants with Down syndrome (0-5 years) by Sue Buckley and Gillian Bird, "Teaching reading to teach talking is probably the single most effective intervention for helping children with Down syndrome to overcome their learning difficulties... Beginning early, by introducing young children to reading from two years of age, will promote the development on both their language and their literacy skills." 

Our next step is to star the Listening Program based on the Tomatis method. "The Listening Program’s psychoacoustically modified music and patent-pending production techniques are designed to stimulate or “exercise” the different functions of the auditory processing system. This enables the brain to better receive, process, store and utilize the valuable information provided through the varied soundscapes in our lives such as music, language and the environment in which we live."

Developing Tommy's communications skills have been one of our priorities because it is what will connect him with the world. I felt that every sacrifice we have done is nothing, comparing with the great feeling of satisfaction I felt today. Hearing "Thank you" from him it was like he was telling me: Mom "thank you" for loving me and accepting me how I am. My boy has a beautiful voice!

Teaching Tommy to read

I have been very proactive since I was prenatally diagnosed of carrying a baby with Down syndrome. While I was pregnant, I was determinate to find anything that would help me to stimulate my son before and after birth. Then, I found Down-Syndrome Online. This a very helpful website to start looking for information of how to teach a child with Down syndrome.  "Down Syndrome Online offers a comprehensive, reliable and up-to-date range of information, resources and services for families, practitioners and researchers caring for, supporting and investigating Down syndrome. Down Syndrome Online is published by Down Syndrome Education International, a leading international charity dedicated to advancing the understanding of effective ways of help the development and education of people with Down syndrome."

Our goal to create a future of opportunities for my son started before I planned. Reading is something you would think to teach to your child when she or he is at school. After talking with other parents with kids with Down syndrome who have taught reading to their kids at early age and reading the book "Early Communications for kids with Down syndrome" and many other articles related to this topic, we are convinced that it is beneficial for our son to read at a very young age.

There is one article a personally recommend to other parents is 'Reading and writing for individuals with Down syndrome - An overview' by Sue Buckley. According to this article, the benefits of teaching reading to teach talking:

• Children with Down syndrome have difficulty in learning their first language from listening 
  
• They find learning visually easier than learning from listening
  
• Printed words seem to be easier for them to remember than spoken words
  
• Print can be used from as early as two years of age to support language learning
  
• Many children with Down syndrome can begin to learn to read from this early age and are able  to remember printed words with ease
  
• All language targets can be taught with the aid of written material, even to children who are not able to remember the words and read independently
  
• Reading activities, at home and in the classroom, teach new vocabulary and grammar.
  
• Reading enables the child with Down syndrome to practise complete sentences - teaching grammar and supporting correct production
  
• Reading can help speech at the level of sounds (phonemes), whole word production and sentence production
  
• Reading to children with Down syndrome and teaching them to read, may be the most effective therapy for developing their speech and language skills from infancy right through school years
  
• Research studies show that reading instruction in school has a significant effect on language and working memory development for children with Down syndrome
  

We started teaching Tommy to read a few weeks ago with The Love and Learning Program. This program was developed by Joe and Susan Kotlinski.

"After our daughter was born with Down syndrome, the doctor told us that we must be realistic and face the fact that our daughter might learn to feed and cloth herself but would not be able to learn higher functioning tasks such as reading. We decided to try to teach her anyway. Because we were not able to find learning materials we felt were suited to her special learning needs, we decided to make our own to help her with language and reading development. We were amazed at what Maria did learn. Encouraged by Maria's preschool teacher we decided to share the technique with other families." 

~ Joe and Susan Kotlinski

The process to teach a child with down syndrome to read is a long term process and it shouldn't take more than 4 minutes a day with the Love and Learning program. We bought the first kit a couple of weeks ago, and Tommy seems to enjoy it. We are combining this program with sight word books and flash cards. 

To get a better guide and support on teaching our child to read, I contacted the Down Syndrome Education International Organization to participate in the study for early readers with Down syndrome. 

Moving Forward

Tommy is motivated to move forward. We never thought that giving him a little break from his therapies would motivate him to be more mobile. His PT was right, he has a mind of his own. He reminds me when I was a child.

Constantly Progressing

We are a young family that is raising a boy with responsibility and a positive attitude, which is not much different from other young American families. The extra chromosome has changed a little bit of the way most people raise their kids. But because of this extra chromosome we are learning many things about early intervention that has empowered our parenting skills.

We want to share all the amazing progress our boy is having, because he is a true example that we all are God’s kids who have been blessed with a set of skills, but sometimes it takes a little bit longer for those skills to develop.

Tommy playing skills are constantly improving. He started to pretend feeding and give me my drink a while ago. We also pretends to talk on the phone. He put his hands on his ear, his phone toy or the actual phone when he talks on the phone to "ita" in Panama. He is also pretending to brush Fred Bird's hair. He is hammering his peg toy and playing the drum. His toy preference is changing because he likes more simple toys. He is stacking blocks. His bigger tower was from 4 empty shoe and toy boxes. He was able to match his puzzle (the sheep figure) three times a few weeks ago. We are now playing with flash cards and he recognizes 42 cards, Yahoo!

Tommy loves rough-housing play. We think he will do extreme sports when he gets older. He enjoys to be up-side-down, to sewing very fast in the swinger, to wrestle with daddy, to bounce on his big ball (the faster the better for him). We have a lot of fun!

Our boy is a singer. He likes to sing in baby language. He sings and does hand play with Twinkle-Twinkle. I love to see him doing the shapes of the diamond when we sing Twinkle-Twinkle. He also enjoys the song: Row, row your boat. We sing “Head, shoulders…”. He knows where his head is, and he is leaning where his nose, mouth and feet are. He likes to sing even opera with Daddy on the car (Those two have fun when they are together).

Our boy is a good imitator, too. He likes to imitate sounds and actions which is very important to learn. He does like the cow, sheep, turkey, horse, dog and car. When it is time for desert and he sees the little bowl, he does "mmmmm". I went to Baby’s R Us the other day and I suddenly heard Tommy doing “mmmmm” and looking at the baby food. He also does the refreshing sound from the old Pepsi commercial.

Tommy has good communication skills. He is becoming verbal. He says a few words, those are: hi, no, yeah, agua (once an while), “tetita or teta” (milk or cup), and "tita or ita" means "abuelita" (granny) in Tommy's baby language. He also says "Hi dada" and "No ma". He said yesterday "Ok" while he was with his Speech Therapist. He already initiates waving and high-5 on his own to interact with others. Tommy does 2 gestures that he converted into sign language. One gesture is that he rub his head with one hand, this means he wants massages on his head. The other one is that he wipes his hands, which means use hand sanitizer. Once, I changed his diaper and I picked him up from the changer and he refused. He did the gesture of wiping his hands and I immediately understood I didn’t use the hand sanitizer. He let me hold him after I used the hand sanitizer. I was extremely happy because his expressive communication is coming along.

Tommy is signing and able to understand English and Spanish (too many communications going on). But we think the sooner the better. He signs all done, more, eat, baby and his version of drink. He learned to sign "baby" by watching the video. I knew because I was singing a fragment of the video song that says "baby, baby, baby signing time" and I saw him very excited signing his version of baby and you can see it in the following video.

Tommy's self-care skills are very good. I think this is because he doesn't have sensory issues. He likes to "bush" his hair and his teeth (Well, his gums because his teeth are taking forever to come out). He also takes his cloth off with a little bit of help and he is trying so hard to put his cloth on. He is actually able to put one leg of his pants on. Impressive! His Occupational therapist says that taking his cloth off is age appropriate, but trying to put his cloth on is for an older kid.

His gross motor skills are slowly progressing, but progressing. His Physical Therapist (PT) thinks Tommy is choosing not to be mobile. Because his decreased muscle tone is mild and his body is strong enough to get around. We got into the conclusion Tommy is being a little bit manipulative because mommy spoils him too much. She also thinks Tommy is tired of all of us pushing him to get mobile. He may probably want to try it on his own because he is very independent. Therefore, she decided to do something unusual, taking him out of the therapy for a little while. We did and we are astonish of the amazing progress he has done since then. He has gone from barely moving to a lot of motion. It sounds ironic, but it is true!

Our PT says that it is the first time she suggested "No therapy" as a therapy without having any medical study supporting the "No therapy". She talked to an experienced PT who said that it is very rare that this happens, but it happened to her twice in her 25 year of experience. Our PT thinks that Tommy has a mind of his own.

His therapists also think he is not walking yet because he seems to be completely focused on his communications, fine motor and playing skills than on his physical skills. The most important for us is that he is constantly progressing.

We feel God chose us for parenting Tommy because he knows our hearts. He knew Tommy would complete our lives with or without the extra chromosome. He knew we would fight for building a future of opportunities for our son.

We don’t know what the future grants for Tommy, but we know he will keep surpassing our expectations.

Moments of my life

This slide show displays some spontaneous moments in my life. If you scroll down, you will see videos of me doing all kid of stuffs -Tommy.

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