Celebrating our son!

Exactly three years ago, my husband and I received the results from the FISH test, confirming that our unborn baby was prenatally diagnosed with Trisomy 21. I was upset with our health-care providers at the hospital because they told us they would give us the result by Monday and it was Wednesday and they were avoiding us because our OB GYN wanted to talk to us. This was the confirmation for me! My husband decided to call to the hospital again and they gave him the results after he insisted. I remember sitting on my desk around 10:30 am at my work when I got the call from my husband to tell me the results were positive for Trisomy 21. I was scared that my son could be hurt, but I never scared of how to take care of him. I couldn't stay working so one of my coworker took me to eat lunch after that I went home. As soon as I got home, I went online and I found about our Down Syndrome local Association. On October 31, 2007 at 1:30pm, I was officially a member of the local Down syndrome Association.

I read so much about Down syndrome before my son was born. I remember reading a list of the possible health issues a child with Trisomy 21 could face, but I also remembered reading the words "Your child may have..." This open the window for me to realize that every child with this diagnosis is differently affected and they necessarily do not get all the health issues in the list. We have learned that every diagnosed child with Trisomy 21 is different and unique as we all are.

There was a Halloween party at my worked that day and I missed it. It would be first time I would dress up because we don't celebrate Halloween in my country. The diagnosis changed everything that day! But this year, we dressed up for Halloween to celebrate the blessing of having our son with Trisomy 21. The entire family is very proud of him! We all are amazed of everything Tommy can do and has accomplished regardless his diagnosis. I keep praying that he can grow up happy and healthy as he has been during this 2 and half years. Those have been the most intensive years of our lives, but any challenge is not a predicament and any sacrifice is enough.

We have fun this year dressing up.

Look at the pictures, they talk by itself.

We are celebrating our son.

Happy Halloween!

Dealing with the guilt -FREE PLAY

Many parents with their newborns with Trisomy 21 get into crazy schedules for medical appointments and therapies, so some little ones get into a busy schedule right after birth. Parents feel the "guilt" of not doing enough therapies at home or not doing the therapies quite often as it should be because they also work full-time. I has felt this guilt many times, but what has helped me to deal with the guilt is to know that FREE PLAY is as important as structured or guided play for a child brain development.

Dr. John Medina, a Developmental Molecular Biologist, scientist and Director of the Brain Center for Applied Learning Research, says in his book 'The Brain rule for baby': :"We now know that open-ended play activities are as important to a child's neural growth as protein. Indeed, the box the flash-cards come in is probably more beneficial to a toddler's brain that the flash-cards themselves... Studies show that, compared with controls, kids allowed a specific type of open-ended play time were:

• More Creative

• Better at language

• Better at problem solving

• Less stressed

• Better at memory

• More socially skilled"

Dr. Jill Stamm also mention the importance of FREE PLAY in his book Bright from the star (this book was based on science research). She says:"So I love the moment when I explain that child's FREE PLAY" is critical because it actually causes the brain's energy to be used in a different way –because the pleasure it brings causes repetition, play reinforces healthy wiring. Play suddenly stops being some kind of iddle time -waster in their eyes. It's elevated to the status of something vitally important for their child to do. (As it should be!)...

Here are three kinds of unstructured time —what I call "sloppy time: —that a child should have every day:

Undirected Play: ... don't need to "direct the action" all the time. Create a child-safe space where your little one can freely explore. Fill it with interesting objects, from basic toys to books to household objects, that he can manipulate at his own pace. Certainly some direct play (Chapter 4) is importnat. But so is free play.

Hanging out: We would sometimes lie down and play made-up games... And share lots of giggles when we thought we had stumped the other. Giggling is good for any brain.

Watching the wold go by: Sitting in a stroller or grocery cart are perfect examples of opportunities for a child's mind to wander... This frees the child to look at colors, shapes going by, watch people, or pay attention to nothing in particular. His brain can spend its time consolidating prior stimuli because it doesn't need to concentrate especially hard on what's in front of him."

"A new report from the American Academy of Pediatrics (AAP) says free and unstructured play is healthy and - in fact - essential for helping children reach important social, emotional, and cognitive developmental milestones as well as helping them manage stress and become resilient. The report, " The Importance of Play in Promoting Healthy Child Development and Maintaining Strong Parent-Child Bonds. ," is written in defense of play and in response to forces threatening free play and unscheduled time..."

Doing therapies thru play (structure play) is important for our kids with Trisomy 21, but giving them FREE TIME for playing should be important, too. They discover the world around them by exploring on their own. I also see it as a way to inculcate 'independency' at a very young age because during free play they make choices about what toy to play with or what area they haven't explored enough. Our son has free play time and during this time he is physically active, which it is very important because it helps him to get his muscles stronger while he discovers the world around him.

Encouraging the desire to explore should be in a safe environment, so design a play room is the ideal, but if this not possible save-proof the house and transform it in a big play house, it is what I have done for my son. I changed my decorative items for toys, household items, books, balls, pretend play toys, and so on. I periodically rotate the toys around the house to encourage exploration and novelty. I sets his toys in different areas so he is free to explore and find them in his own schedule without direction from us. This keeps him busy until lunch. After lunch, he takes his nap and when I get from work we often work on structured play based on his therapies for a short period of time. Fee play should be with supervision. For example: My son turned the stove knobs and he was able to turned the stove on. He also discovered how to open the oven. He climbed on the oven door and was getting ready to see what was on the stove and the stove was on. We closely supervise him, therefore these two moments didn't become in serious situations.

I enjoy watching him when he learns to do things from our structured play, but I enjoy more when he discovers how to do things on his own. For example: Last week, he was playing with a Tupperware container for about two hours and he suddenly discovered how to seal the lid. Now, when we play with play-dough, he helps to close the containers.

Welcome to Tommy's World

Tommy vs. Daddy

Rough housing play is an excellent way of FREE play

while parents bound with their kids.

"Giggling is good for any brain."

A Basketball ring can be a necklace

in Tommy's world

Anything can be a hat in Tommy's world.

OLD VHC Box of the movie Titanic

In Tommy's world, Huggie swimmer pants can be wore on

your pants and not underneath.

I want my son enjoy everything as a child regardless his

developmental challenges. I am glad that my husband and I have

fund the balance between FREE PLAY and structured play.

Hip-Hip Hooray! Toilet Learning is Fun! (Part 2)

Three weeks have passed since Tommy started toilet learning. This a long process and so far we are having so much fun, which is what it is making this process a pleasant experience without frustration. I have heard that this process can take about 8 months to master for some typical developmental kids. How long will the process take for us? We don't know, but the most important is that along the process our son learns to read his biological needs.

Successful stories during our potty learning process

We had a family reunion on Friday, October 8th and we came back home late. When I was helping Tommy get ready to go to bed, I noticed his pull-up was dry and it was around 9:00 p.m. He usually has a pee around 7:00 p.m., so I immediately took him to the bathroom and sat him on his potty chair, not even 2 minutes passed when he had a pee. It was an exciting moment because it was obvious he was holding in the urine. So from now own, I will keep our travel potty seat in the bag because I don't want that 'holding in urine or bowel movements' become an issue.

Last night, Tommy did let me know he wanted to go potty. It has been one of the most exciting moments of my life, ha, ha, ha, ha. It was 6:50 p.m. when I was chatting with my mom in Panama. Suddenly, I saw Tommy signing "potty." I was skeptical, but I took him to the bathroom and he had a pee right after he sat on the potty. He had a big smile when he saw my excitement.

Today, he signed potty when we were leaving a local pharmacy. I didn't know where to find a bathroom, so I rough to the house. He didn't go. Well, we went to the dinning room to eat our lunch and he went after lunch. I learned a lesson, we need a travel potty chair to keep in my car because there are not bathrooms everywhere. We have a small portable potty seat that fit in my bag. I use it when I go to the mall and I just put it on the toilet, but if I have a situation again where I don't find a bathroom, a travel potty chair is the best solution.

Turning potty learning in a positive experience

Tommy has learned a new sign 'potty', which allow the communication between us during the potty learning process. He verbally says 'poo' and 'pee,' which he learned when we started potty learning three weeks ago. He thinks go potty is fun because when I ask him to say pee he says it and immediately he claps with a happy face. My son is also learning to pull up and down his underpants. He is transferring this to actually put his pants on. He has been able to put on leg of his pants on all by himself. We play pretend play during potty time. Tommy seat his boy-doll to 'go potty' when he is on potty time. We wipes the boy-dolls bottom when he is done, so this helps Tommy to get ready for a future step in our potty learning process. When he has a great potty time, he puts stickers on his reward sticker book all by himself. Our process of potty learning is more than helping my son to understand his body because it involves expressive communication, language development, self-care skills, fine motor skills, cognition and auditory discrimination between English and Spanish.

Keeping potty learning fun

• Pretend play. I am planning to get new cloth for our boy-doll, so Tommy can practice dressing and undressing the doll.
• Sign a potty song. I am searching for cute potty training songs that I can sing to Tommy during potty time.
• Decorate Tommy's potty chair. Tommy will decorate his potty chair with his assistant (mommy). The theme for the decoration is 'Potty Kingdom' where Tommy is the king.
• Increase our potty learning library. I have seen new books that seems interesting. I will get books with real picture because Tommy is more interested in this type of potty training books.

Enjoy the video of Tommy signing 'Potty'

TIP: A great resource for parents is the

Pull-Ups® Big Kid Central® DVD.

It has good information on how make potty training

a pleasant experience for parents and kids.

The best of all you can order it for FREE.

Toilet Learning is Fun!

Tommy has shown physical readiness for toilet learning since the beginning of the year. By that time, I was excited with the idea of toilet learning and I assisted to a toilet learning class sponsored by Parents as teachers last March. The class was very instructive and it made me realize we should hold off on toilet learning because Tommy wasn't walking yet, even although he had some physical readiness to start. About two months ago, our OT suggested to start potty training and I decided to give it a try because I knew Tommy has the physical readiness necessary to initiate the toilet learning process.

We took Tommy with us to purchase the potty chair. In our search for a potty chair, We found Elmo Potty Chair —3-in-1 chair, seat and stool. This potty chair offers ten encouraging phrases in English, Spanish and Frensh and it comes with A Sesame Street Mini-Book and 20 colorful stickers. I use those features to encourage language development and fine motor skills. I mimic Elmo's voice and repeat the phrases, which it is funny for Tommy, so he can see the motion of my lips and tongue and he put the stickers all by himself on the book practicing pincer grasp and wrist rotation. We also got some potty learning books because Tommy is a book lover. These activities make potty learning fun! Learning to use the potty should be a positive experience for kids and parents.

I was insecure of my parenting skills about how to initiate toilet learning with Tommy. So, I talked to our DT and she suggested do it as a routine in the morning and evening. So far, so good! He is enjoying potty time in the morning and the evening because he likes his chair. He keeps giving Elmo a high five every time he is on the chair, and after he is done, I allow him to down the flush handle. Because He is becoming verbal, I am also encouraging him to say pee and poop when he goes, he repeats them after me and smile. He also takes the toilet paper, I guess because daddy is his role model. I let him to try to roll the paper, but I will take this step without any hurry.

Toilet learning is different from toilet training because toilet training is a process that the adult direct to a child; toilet learning is when the child is involve in their own learning while having fun. Toilet learning starts with readiness signs that tell if the child is ready to use the toilet. Learning will happen when parents teach in a way that does not punish. The child should learn to listen to their bodies, to take their own clothes off with a little help, and to feel good about learning "go potty." The toilet learning goal is that the child feels proud of what he or she has done, which plays an important role in the child’s self esteem, so genuine and enthusiastic verbal praises are important. During toilet learning, there are only lessons and not accidents, the child learns from it.

Getting ready

• Begin to introduce the concepts wet, dry, clean, duty before starting potty training.
• Encourage your child get familiar with the potty chair before. We let Tommy to seat on chair a few times before he actually used it. I am also planing to pretend play "go potty" with his stuffed animals and his boy-doll that has a little potty chair.
• Teach the child to wash his hands before the toilet learning process.

• Read potty training books 6 weeks or so before starting the toilet learning process.

Signs of readiness

According to the book "The Wonder Years":

Between 18 month to two years, children often start to show signs of readiness, but some children may not be ready until two and half years or older.

Is my child ready?

There are a number of signs that will alert you to when your child may be ready to start using the potty. Some your will notice, others will be brought to your attention!

What you will notice:

• Your child's bowel movements occur on a fairly regular and predictable schedule.

• His diaper is not always wet. Young toddlers urinate often. If diapers remain dry for a couple of hours at a time it suggests that the frequency of urination is slowing.

• Your child is able to follow simple instructions, walk to the bathroom (or potty), and can help undress himself.

What your child may do:

• Get upset when he has dirty diaper.

• Show signs that he knows that he is about to go in his diaper, such as hiding behind the couch or squatting in a corner.

• Come to tell you or give a sign when he has passed urine or a bowel movement.

• Go and get the potty.

• Sit on the potty —possible with his diaper on.

• Follow your into the toilet to see what happens.

When you have a child with Trisomy 21 is really hard to know when the child is ready. In our son's case it has been the physical readiness the main indicator that he is ready. But I also think he is emotionally ready because he is having fun and patient while he seats on the potty. We are not sure if it has been good luck or if Tommy is actually understanding this concept, but he has used the potty chair since we started on Saturday night (October 2nd.) He has done both, #1 and #2, actually on Sunday was his #1 in the potty chair for the first time. He may be ready for learning "go potty" on his own, but we don't know how long it will take; however, we are so excited he has initiated toilet learning as a big boy.