Recuing my son: What to do when your child refuses to drink water

What to do when your child refuses to drink water:
KEEP OFFERING PLAIN WATER, THEY WILL GIVE UP!

A child cannot take control of their food and water intake because they are not mature enough to make decisions over their nutrition. It is my responsibility, as a parent, to promote good eating habits. I try that my boys eat healthy in all possible ways, but I think I failed in one aspect when Tommy was about 18 month. One day, he refused to drink water and I gave if up too soon. The problem started when we began to give him juice and I didn't realize it. We have prolonged the problem by mixing the water with juice. So we have limited the juice intake; just at school, he is allowed to drink water mixed with juice because I don't want his teacher struggling with him not drinking water. But I will talk to his teacher if she can gradually eliminate the juice from his water. He used to enjoy water as his little brother does now. We don't give juice to Francis because I know now if a child regularly eats fruits and drinks milk and water, juice it is not important in a child's diet.

I learned a lesson and we are on time to fix the problem. It has taken a lot of patient and learn to read Tommy's like and dislikes due to his communication barriers. We trick him by giving him snacks will make him thirsty, so when he is all done and he drinks water without saying a word to him. When I think in the past, there were not way to make Tommy to drink plain water. So there is a huge progress.

My mom staid with us for a few months, so she took the lead in making Tommy to like water. She was successful! But she went back home and Tommy began to refused drinking water from the blue water bottle his OT gave him. I know the adjustment process of not having my mom around had to be with it. She can read him very well, so she knows Tommy's likes and dislikes regardless his communication barriers. So I brainstormed about the situation. I realized he was needing something to motivate him. It wasn't the water, it was the cup. He gets bored of certain things if they are done over and over again in the same way. So Paying attention to Tommy's personality is crucial to know his like and dislike. I switched the blue bottler water to a cup Tommy wasn't familiar with, while I let him make a choice to give him more control of the situation. It worked and it is still working!

In my search on how to motivate him to drink water, I found out about the bobble water bottles. They have a fashionable design that comes with a water filter. They are free of BPA, Phthalates and PVC. I am ordering more of these bottles because they are not made to be washed in the dishwasher, but I read it after it was too late. I am also using these bottles to reduce toxins in the water because of Tommy's high levels of toxicity. But the best of old, Tommy is motivated to drink water with these bottles.

Here is Tommy drinking water from his bobble water bottle this morning.

He drank 5 oz of water this morning without struggles.

On Monday, November 19, we were at the playground in the evening and I asked Tommy if he wanted to "swing or water" so it could be his choice –rather than me forcing him— and he answered "A LOT OF WATER." Yes! these words. Just clearly like the water. It took me several minutes to actually believe these words were coming from him because his communication barriers and his dislike for water. I am glad my husband was there to confirm to me what I heard. Tommy drank 8 oz of water between the time we were at the playground and our way home.  This day, my effort to help Tommy to drink plain water was paid off when I heard his voice demanding "A LOT OF WATER."

Currently, Tommy is mostly drinking water by his choice. I ask him sometimes, Do you want a sip of water? while he is eating, so I wait for any kind of response, verbal or gesture.* He still gives trouble to our relative, who helps with baby sitting, when they offer water to him. So I contacted our former developmental therapist if she can help us with this situation because I think it is a behavioral issue, rather than him not liking to drink water when they offer the water to him. I think it is more Tommy taking over of the situation, how it had happened in the past. There are some days better than others, but I feel I am starting to win this battle.

Conclusion
There are 5 steps to make my son or maybe any child to drink plain water:

1. To pay attention to child's personality and non-verbal cues to learn about his or her likes and dislikes
2. To make the process fun by getting funny water bottles
3. To allow the child have control of the situation by giving him or her "choices."
4. To be consistant in offering plain water often.
5. To avoid water substitutes (juice, flavored water, vitamin water, etc). They just make the issue worse and longer.

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* Approximately more than 60% of humans communication is by gestures. So even when our kids with communication barriers struggles verbalizing their wants and needs, they always communicate with their body language. We have to pay attention to it and wait for any kind of response. It works!

Rescuing my son: Unhealthy toxicity levels

Fighting back Sensory Processing Disorder is not easy, specially because it is a hiding disability. It is something you can not see. I am informing my self, as much as I can, to find the best ways to help Tommy to surpass this challenge. I feel very confident with the team of professional that are working with us. We are using sources, which are proven by scientist research, to formulate Tommy's wellness plan. I will explain in separate post the urine test that was done to Tommy to know his neurotransmitter levels. The same test also showed that Tommy's toxicity is extremely high to the point it is unhealthy. His nutritionist have recommended a detoxification treatment, based on a medical food to support the liver to realize toxins. It is the stronger treatment available that can be given to a child, but it is safe.

Natural ways to detox

• A person, adult or child, should drink half of the body weight measure per once. For example: If I weight 104 lb, I should drink 52 oz of plain water per day. Water has ions that act like magnets that attract toxins and take them out when we excrete liquid waste (urine and sweat). We reviewed Tommy's water intake and he wasn't drinking enough water. We are working on making him to drink plain water. Tommy is getting the support from his teacher in this process, she is making sure he drinks water at school every day. At home, we are doing everything to encourage him to drink plain water. He doesn't like water, so he is giving us hard time, but if we sing his favorite songs while he drinks or encourage him to drink water by us drinking water with a water bottle, then he complies. I am keeping a water count per day, so he meets his daily water intake. There are days he enjoys to drink water and days he doesn't want to drink much, but I still find ways that he meets the amount of water he should drink. This is a huge improvement because before he didn't want to drink plain water at all.
• Epsom salt bath recommended by his nutritionist. Epsom salt bath benefits have been proven by scientist research. Tommy's epsom salt bath is once a week. I just put one cup of Epsom salt in the bathtub filled with warm water. While the bathtub is getting filled,  the bathroom door is close to raise the temperature in the bathroom, so it makes Tommy sweat and realize toxins. Meanwhile, the body is also absorbing the Epsom salt while he is soaked in there for 10 minutes. 
• Increasing exercise routine. Tommy and I are physically active, at least for 15 minutes, to the point we sweat. In this way, Tommy naturally realizes toxins, increases endurance and gets body awareness. The good thing is Tommy sweats like crazy, so it doesn't take long to make him sweat. I also offer water while we are doing our routine, which is basically jumping and dancing while we listen to music such as, Eye of the tiger or I gotta feeling. We are having fun!

Here is Tommy drinking from his favorite water bottle.

This bottle has a special meaning, his private paid OT gave it to him.

This the only container Tommy accepts to drink water.

As I said, sensory processing is hidden disability, but not invisible. The child will always show the sings, but as a parent, you should find a good team of professionals who will lead you to the right and safe treatment for your child. We should be councious that our kids with Trisomy 21 may have a liver and kidsneys that may work slower when they have to realize toxins. A doctor won't tell you this, I figured it out reading sciencit research about people with Trisomy 21.

It makes sense to me now the reason his sensory issues got out of control, Tommy got loaded of strong medications during and after the hospitalization. Medications are good, but they are full of toxins. So they altered his biochemical balance. His body may still be working on getting toxins resulting from all these medications, plus the toxins he naturally gets every day. I will post in the coming months, when we finish the treatment, about differences/improvements we have noticed in his sensory processing issues and what are the results when we retest.

The Sky is the Limit!

My boys' moments

I am ready to go to bed and I am exhausted as most of my days, but today I have a greatful and happy feeling.  My boys are outstanding. They both are successful in there own and unique way. Tommy had a follow up appointment  with his ENT and she was very excited about how much Tommy has grown. Perfect height, perfect weight! She even noticed Tommy is progressing. Everybody at the Down Syndrome clinic was worried about Tommy's regressions. But today more than ever before, I noticed he is more mature. When we got to Down syndrome clinic waiting area, I went to check-in while I let him going around, instead of running around he went right to sit and wait for me. Later in the evening, we went for a walk and when we came back our neighbor was putting brinks around her garden. Tommy got curious about what she was doing. He got closer to her because he wanted to hold the brick. She carefully allowed him to hold the brink while she was saying: "it's heavy" and Tommy held the brick and told her: "it's light." We all spontaneously laugh!

This evening, we also have our Parents as Teacher meeting for Francis. The lady was impressed how advanced Francis is. He is already meeting milestones for 24 month old baby and he is just 14 months. The best of all we have done absolutely nothing to help him meet  those milestones ahead. The lady noticed Francis language comprehension as well as language expression are ahead. She was so impressed he is already humming. She also observed Francis's fine motor skills are ahead because he is already working on screw and unscrew jars. She agrees with me, Francis needs to be challenged because the gap between him and his age is getting bigger.

 I am redirecting my therapy (play time) with Tommy to include Francis. Francis enjoys it so much, and he deffenetly gets benefit from it. I have been selecting our Toys/tools to keep the ones that work for both of them and getting out the toys/tools that the boys are not interested anymore. As well as working on a new list of Toys/tools I need to work (play) with the boys. I enjoying so much being a mom, but I also enjoy being their first teacher!

GOD, THANK YOU FOR MY BOYS! YOU DO YOUR WONDERS IN A MYSTERY WAY!

Meet Tim Harris, an entrepreneur young man with Trisomy 21

What Does Down syndrome mean? Down syndrome means to overcome the odds that are put on people who are diagnosed with it. This is what my son with Trisomy 21 had taught me. Down syndrome means "ACHIEVEMENT AND PRIDE." This is what Tommy teaches to all of us around him when he says: I DID IT, with a  spontaneous smile because he knows "he can do it." This is what Tim Harris teaches to the world by being the first entrepreneur young man with Trisomy 21 who owns and operate his business.

I have been following Tim Harris's story since it was published on People Magazine. I have seen mutliples videos of him and and I have observed how much Tim  has grown as a business man. How secure he looks comparing him with is first interviews two years ago. His story is very inspirational! His parents went agaisnt what society expect for a child with Trisomy 21. They helped Tim to make his dream come true without putting limits of him. Today, he probably is the only person with Trisomy 21 who owns and runs his own business.

Today, Tim's Place is celebration his 2nd year in business. If you would like to send your wishes to him click on: SENT A WISH TO TIM.

Wild, Wild, Wild West!

More temerarious than Jesse James
Jersa's Farm Party
September 29th, 2012

Hooray! Hooray! Potty time is fun

Tommy showed readiness for Toilet Learning at the same age of a typical child, so we were very proud of him and began to help him to accomplish this big milestone on October 2010. From October 2010 to January 2011, he was doing great and began to let us know when he wanted to go potty. But He got seriously ill with a repiratory infection and he completely regressed. So I got so overwhelmed with everything that was going on after the hospitalization that I completely stopped working on potty Learning. I began to avoid it even when Tommy was occasionally signing "potty."

My mom came to visit for three months, and then, she began to help him to regain his potty skills. She doesn't have a lot of time working on potty learning and Tommy has began to verbalize when he wants to go "pooh" in the last couple of days and I could capture it today. So we are very excited he is regaining this skill. Tommy is an amazing child because going "pooh" always has been easier for him. So we will be focussing in going "peeh" in the coming days.

We gave him a "galletita" (cookie) as a reward. He was so proud of him and he began to say very loudly "I DID IT." Definitely, he doesn't know about limits and he is conscious when he is successful on everything he makes the decision to accomplish. By the way, Tommy's properly verbalized the words "galletita" and cookies. He also answers "galletita" when we has made the question in English or vice-versa. He is definitely simultaneously bilingual. What proud we are of him.

The picture shows how proud he was of himself

Here are the links when we started potty learning with Tommy back on October 2010. It has great info about this matter.
 Toilet Learning is Fun
Hip Hooray! Toilet Learning is Fun
Potty Training is going well

Bilingualism and our kids with Trisomy 21

Based on my own experience raising my son, with Trisomy 21, being simultaneously bilingual has more advantage than disadvantage. Hearing two languages at home is a factor that has helped Tommy in his Speech because he has to process two set of sounds, which strength his auditory processing more than if he would be exposed to just one language. Speech is his strength in the area of communications. So why not to take advantage of raising him bilingual. We don't have to paid for Spanish classes. It's a natural and on going simulation that I am seeing results without the pressure of doing therapy or dedicating time to help him to learn Spanish. My long term goal, for both of my kids, is that they can learn a third language into the Roman Languages. I can naturally understand a little bit of  Italian and Portuguese, and a little of French, but it is harder than Italian and Portuguese. This is because I speaks two Roman Languages.

Currently, there are not much reaseach or teaching guidence to help our kids with Trisomy 21 two learn a second language. But there many multicultural families who has gone against what their Speech Therapist has advised to not teach a second language to a child with Trisomy 21. Those parents has proven to the world how wrong was to think that a child with Trisomy 21 couldn't learn 2 or more languages, because there are kids with Tridomy 21 who have learned more than 2 languages.

I don't have a teaching method.  The key for learning a second language is constantly listening to the second language. I just talk, read and sing in Spanish as much as I can when I am home with the kids. I have to tell I am very proud that both of my kids understand Spanish very well, considering I am the only one that talks to them in Spanish. So consistency is other important factor in helping a child with Trisomy 21, or any child, to learn a second language.

A few tips to keep going the second spoken language at your home:
1. Build a library with book and songs in the second language
2. keeps the books in place where you and the kids spend a lot of time together
3. Ask relatives for books in the second language as Birthday or Christmas gifts.

Information about bilingualism and kids with Trisomy 21

Language Learning in Four Bilingual Children with Down Syndrome: A Detailed Analysis of Vocabulary and Morphosyntax

Can Children with Down Syndrome learn more than one language?

Bilingual Children with Down Syndrome

Can Children with Language Impairment Learn Two Languages

THINK AGAIN, Children with Down Syndrome can Become Multilingual

Based on my own experience, both of my kids should learn both languages because they are part of a multicultural family, My family just speaks Spanish and my husband's family just speaks English, how cruel it would be to insulate Tommy from one family or the other just because he has Trisomy 21.  My mom doesn't see her grant kids quite often because she leaves in other country, and she just speaks Spanish. I cannot tell my mom, who loves Tommy so much, that she won't never be available to communicate with his grandson in Spanish just because he has Down syndrome. How cruel would be thinking in this way for Tommy and my mom because they have have a special bond, and they communicate very well, he perfectly understand when she speaks Spanish to him, no doubt about it. We don't put limits on Tommy just because he has Trisomy 21. He has the right to enjoy being part of multicultural family, as his younger brother. By the way, he doesn't have the American accent when he says words in Spanish and he doesn't have the Spanish accent when he says words in English. We are very proud of Tommy's bilingual skills.

THE SKY IS THE LIMIT!

Rescuing my son: Checking for Non-anemic Iron Deficiency

"What your doctor won’t tell you (referring to your child with Trisomy 21)... iron is essential for growth, development, and a healthy immune system. Iron deficiencies are proven to affect IQ and focus in children. Since iron excess can lead to enhanced damage through oxidative stress, it is important to be tested for iron. Measuring blood levels of ferritin is the best way to evaluate how much iron is stored in the body, and whether or not you are deficient." Nutichem.com


Iron excess in kids with Trisomy 21 is common, but it is not always the case. Trisomy 21 is a genetic disorder and not a disease, which means the ways the syndrome will affect the person will vary due to the combination of multiple inherited genes and the exchanged genes by the extra chromosome. So there are also many kids with Trisomy 21 with low iron levels and animina. Therefore, testing is the best way to check a child with trisomy 21 iron levels.

Borderline iron levels is known as depletion or non-anemic iron deficiency. When a person has non-anemic iron deficiency it means the person could be at risk of developing anemia, so iron supplementation may be recommended. Because many kids with Trisomy 21 have hypothyroidism, there is a higher risk for these kids to develop iron depilation leading to anemia. As well as, if the child has food allergy or sensitivity, they are at a higher risk of non-anemic iron deficiency because the gastro intestinal track it is not absorbing the adequate iron intake.

Non-anemic iron deficiency can cause problems. According to the study 'Women with low, but not anemic, iron also have impaired physical performance', done by the Cornell University in New York, has shown that "iron-depleted women had lower physical work capacity, and their performance was related to the amount of stored body iron... Other researchers have recently reported that moderate iron deficiency also compromises memory and verbal learning in teen-agers."  If non-anemic iron can cause low physical performance in an adult women, it makes me to conclude, it should affect in a similar way to a young child's body that it is still  developing, but even more to a child with Trisomy 21, who is already predisposed to have issues with physical performance and memory lost. 

Iron and Oxidative Stress
Because of the recommendation from the lab where we get Tommy's vitamin, and after talking to his nutritionist, we tested Tommy for iron levels. The results came back showing "borderline iron levels", which means, he is just a little bit underneath the normal level. Therefore, it has been recommended iron supplementation by our local Down Syndrome Clinic and Tommy's nutritionist.

Normal levels of iron are necessary for the body to get adequate level of micronutrients, but its accumulation lead to toxic levels that generates oxidative stress. So iron supplementation should be regulated to avoid high levels of iron. Oxidative stress develops at a faster speed in our kids with Trisomy 21 than in the typical population. Therefore, monitoring our son's iron levels has become part of our wellness plan to keep him healthy.

What is Oxidative Stress? According to Enzo Life Sciences' website "Oxidative stress is increasingly implicated as a possible underlying pathogenic mechanism in a wide range of diseases such as asthma, atherosclerosis, cardiovascular disease, diabetes, cancer, and Alzheimer’s disease. It results from an imbalance between the production of reactive oxygen species (ROS) and the system's ability to detoxify the reactive intermediates or repair the resulting damage."

Oxidative stress under control

1. Detoxification methods to prevent iron and toxins accumulation. Quilation has been recommended by the physician is in charge of Tommy's nutrition. Currently, we are doing a detox treatment and epson salt bath. We also incorporated kefir beverage in Tommy's diet because kefir has anti-oxidative components to keep oxidative stress under control, which has been proven throughout scientific research. We are going to focused in detoxification for the following months because there is high concern about neurotransmitter levels in Tommy's test results, that show extremely high levels of toxicity, which means his body is not flushing the toxins properly. The natural process for the body to flush toxins in a person with Trisomy 21 is slower than in a typical person.
2. Monitoring Oxidative stress through blood work or urine test. Iron is not the only factor that increases oxidative stress in our kids with trisomy 21. Oxygen quality intake is also other way oxidative stress can raise in our kids. Many kids with Trisomy 21 are mouth breather and mouth breathing quickly releases huge quantities of carbon dioxide. Therefore, a way to check for oxidative stress is with a Basic Metabolic Panel (BMP). This test is a set of 8 test to check sugar (glucose) and calcium levels in the blood, as well as, the kidneys function and body electrolyte and fluid balance. So this test give a general information about how the body is performing, which also includes a test for carbon dioxide levels. If the carbon dioxide it is too high, their is a high risk for oxidative stress. We already did the test and Tommy's BMP came back normal. Right now there is not  a big concern about oxidative stress. Maybe in the future, we will do a test for oxidative stress as part of our wellness plan to keep Tommy healthy if it would be a concern.

Our Experience
As soon as, we began to supplement with iron we saw a big change on Tommy. His endurance has dramatically improved, he has became more physically active. His attention span has also improved. So supplementing with iron, it is helping his body and mind more than what I was expecting. 

We are supplementing iron through food and supplement. The iron supplement we are giving to Tommy has Vitamin C and Vitamin B12, because they are essential for iron absorption. We are also providing a balance diet to him with food rich in vitamin C and Vitamin B12, so he can get most the nutrients he needs from his food, but he is in stage he doesn't want to eat much at dinner time. So supplementation is recommended for him.

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Enzo Life Sciences is a leading manufacturer of high quality reagents, kits and products supplied to scientific researchers in academia, clinical research and drug discovery. With direct sales operations in US, Switzerland, Germany, UK, France and Benelux.