Celebrating my son

It has been a very rough year and October has been a very tragic month. But regardless what it is happening in the outside world, I still have to face my son's challenges. Autism has make his life very challenging. The challenges go from struggle to relate to people following with withdrawn from the environment to stopping his development. It was not this way when he was developing with just Down syndrome. He doesn't have the major health issues related to Down syndrome. He is one of the very few kids that it is seeing at the local Down syndrome clinic that has a good health. We just go the Down syndrome clinic once a year to waste money, as my husband says. Because our son just goes there to be monitored. He just have very few health issues, which are very mild and under proper treatment.

• He has AAI (Atlantoaxila Instability), but the doctor says is slightly off considering his genetic disorder, so there is not concern about it. The recommendation is just to monitor him twice a year. It has not changed in the last 5 years. 
• He is also nearsighted. It has not gotten worsen, his prescription remains almost the same all these years with the possibility that he can grow out of it. This means that he may not need glass in the future.
• He also has hypothyroidism and he is taken a small dosage. His thyroid medication was decreased three months ago after his gut issues began to improved. It was decreased again a few weeks ago.

Tommy doesn't get common colds often and it is not congested all the time as it is expected for having Down syndrome. This is because he has been genetic blessed with ear, nose and throat ducts a little narrower than typical children, but not as narrow as kids with the same genetic disorder. The doctor that made the ENT exam several years ago was impressed because it was the first time he saw this in a child with Down syndrome. His neuro-typical bother has had more ear infections than Tommy. Tommy has never had a surgery and according to an extensive testing while he was born, all his organs were performing perfectly. Other remarkable fact in Tommy's health is that he outgrew his Asthma diagnosis about 9 months after he received the diagnosis. This proves that Down syndrome is not a cookie cutter and doctors should be more open minded about it.

When he only had Down syndrome, he was developmentally doing many things according to his age. Even when he had challenges due to low muscle tone, he was gaining skills, so he was constantly progressing. He learned to wash his hands before he learned to walk. 

However, there are many manifestations when it comes to Autism. But facing Down syndrome and Autism at the same time makes the dynamic more challenging and interesting because it makes him less compliant and maybe with more behavior issues if he would only have had Down syndrome. Here is a study that make this clear:

Prevalence of autism spectrum disorder symptomatology and related behavioural characteristics in individuals with Down syndrome.

Here are some manifestations of Autism in my son:

• Regressions on all developmental areas, including fine motor and gross motor skills. Some kids with Autism have experienced regression in the motor area, which is due to Ataxia and Mitochondrial dysfunction. But I have not found any information on massive regressions like my son experienced in kids with only Down syndrome. 
• His Great challenge is communication, not speech. Tommy has been blessed with good articulation and tangible speech, which is one of the main struggle for many kids facing Trisomy 21 (Down syndrome). But for him the is issue is to learn to use the power of words as many kids with Autism where gestures is very limited, 
• My son cannot relate to people, while most kids with Down syndrome are very social, he rejects people. I was rejected by him when Autism began to manifest. 
• Regid routines is a struggle. Because it sets him off and I don't know how to help him. 

I had a meeting with special Ed. teacher and she expressed to me that people may not give credit to Tommy, but he is VERY SMART. He has been showing to her that he knows a lot more of what he normally shows. She sees what I see! She was working with him one day and she told him that they would be working on something. She left the desk to look for something and Tommy told her: No, I want to eat. We know Tommy can speak, but we don't know what stops him to communicate. We personally has experienced at home many times where he has communicates his thaughts with a perfect speech. A month ago, he was playing with the bathroom light by turing it on and off repeatedly, but it didn't turn anymore because it got broken. When it stopped turning on, he said: Oh, Oh, What happened? I have noticed he usually speaks in context when people are not directly looking at him. He has done an enormous progress with eye contact, but he still struggles with it specially with unfamiliar people. This doesn't sounds like Down syndrome!

Yes, there are differences in having Autism and Down syndrome combined. I am not tiered of saying it neither of posting about it because the science community is not doing much about it. If you look for support, there is not much hope. I have known kids in their 20s with dual diagnosis who are not potty trained and they are socially withdrawn. It is not the paretnes faults! The combinations of both conditions is not well understood as Down sydnrome along and Autism along are not well undesrtood. Parents are completely alone fighting against something nobody really knows what to do or how to help.  Is this going to stop me to fight for a better future for my son? ABSOLUTELY, NO. I was reaised exacly to go against the ODDS. So this is a challenge, nothing is written on stone. Based on my experiecne, the answer to help my son is on biochemistry and neuroscience, but these science fields are not easy to reach for many families and the monetary demand is huge.

This is the Down syndrome month where I should be posting about Down syndrome, but Down syndrome wasn't our main challenge before and it is not our main challenge now. I am proud of my son, but we don't fit in the Down syndrome side neither the Autism side. I honestly feel more comfortable, familiar and Knowledgeable  with the Autism than Down syndrome. Because Autism is our main challenge. Regardless the diagnosis, I have a lot to celebrate about my son, but not necessarily due to Down syndrome neither Autism.

Potty Party Progress (Part 3)

Potty Training Background

Before talking about our potty training progress, I have to say how nervous I was last week about it because it took me to the moments when Tommy was learning to go potty when he was about 30 months by the end of 2010 an the beginning of 2011.

This time period was very emotionally for me because I had a miscarriage in progress when I was expecting Francis right before Christmas in 20110, and then, just a month later I had to face Tommy being rough to the emergency room. Then right after, he began to display Autism characteristics and his development stopped, including potty training. A new issues, leaky gut, appeared that directly impacted continuing with potty training. Over the last 6 years, I have been fully dedicated to heal his gut, and finally, I got the right specialist who has helped enormously so Tommy now can have regular bowl movements. If you read my old post, Tommy had the reediness for potty training when he was a toddler, but he lost everything after the hospitalization in January 2011. His overall muscle system was affected, which it could be due to mitochondrial function affected by the medications and the virus at that time. It was a completely mess, but now, it is time to retake potty training! This makes me to face how much Tommy has lost because of AUTISM, but it has also made me stronger because I am fighting back against Autism.  

This is why I like about blogging— below are old post about our potty training experience when Tommy was a toddler: 
Toilet learning is fun!
Hip, hip-hurry!Toilet-learning is fun!
Potty training is going well

Day 1 (September 9, 2011)

It was a completely mess. There were two occasions where he was not happy about our potty party. So I got armed of patient. Nothing was working to make him to comply. But after many tries, he complied to sit on the toilet.  He had many, many accidents and one success.  But I feel still is a success because he had a lot of practise on important steps to potty training, such as: taking his understands by himself, cleaning his accidents as well as working on other skills while we wait for the timer to ring. 

Day 2 (September 10, 2011)

Not much progress on going potty. But he had a huge progress on washing his hands by himself. If I offered a spoon of ice-cream, he roughed to wash his hands all by himself. I also noticed more communication. For example: I showed his rewards and he purposely requested Grober and big bird, the were not on sticker shit I was showing him. But I had them on the sticker book and he saw them before. He also had and accident and he said: I went potty!  He also told me "potty", but we couldn't make it on time to the bathroom. He even told me: I want to watch a movie. I saw a lot of verbalization today with a purpose! He definitely had a lot more fun on Day 2. We made our potty party super fun. 

Day 3 (September 11, 2011)

I encountered a lot more behaviors. I think it has to be that Tommy struggled to fall asleep last night which is out of the norm and he may not felt good in the morning, but he bounced back to his normal. The hole morning he was not into our potty party. But, he told me "potty" again. He wanted to pee, so he got a big sticker as a reward and he was very happy with his bog sticker. We also sang "celebrate" from the Potty Time CD by Rachael Coleman. He sat on the toilet and 10 minutes passed, the timer went off so It was time leave the toilet, but he refused. Then, I let him to stay for 10 more minutes. But he kept holding it. Then, we had another struggle about washing his hands. Finally, he washed his hands, but he didn't get his spoon of ice cream as a reward because he had a bad behavior. After a great success yesterday in washing hands, today was a struggle. He didn't care for the ice cream anymore. After, we finished, we went upstairs to get my notebook, so I can revise what I am doing. Then, he when to my bathroom and shot the door and he went potty in the bathroom, but not on the toilet. Around 11:10 am he got hungry, but he didn't eat all his food. Then, I noticed that he wasn't feeling good. I checked and he had a fever. So he took a nap and our potty party was postpone because after nap, he had another fever. But I feel very happy with our first Potty Party Boot Camp. 

I know understand why Mrs. Hickey says that she enjoys to potty train kids. You can see their developmental growth in matter of days. When it is about kids with special needs, you can see how capable they are of leaning this important life skill and makes you even more proud of working on such a task because it is about humanity because it helps them with self-confidence and independance.

I enjoyed this time with Tommy because it was just the two of us in the house. So my full attention was dedicated to him and we connected in a very meaningful way. I wish I could do this more often, because it was not about potty training, we also had fun and worked on so many skills without forcing anything and we were doing these by just being a mom and a child, there was not a disability. You can see it on our  videos when we both enjoy singing "A todo pulmon" (Full-throated) like we say in Spanish. It has changed the perspective of what I had before Friday. I was nervous about this boot camp, but I will do this again.

Blowing strengths the abdominal muscles. 

So I thought this could help on getting those muscle ready while we wait.

Tommy has learned the songs of Potty Time Signing DVDs

 including the signs  for wake up, sleep, eat and drink. 

he doesn't sign them, but he understand them when I singed them

when I stopped so he could fill in with the word that

 follows in the lyric of the song. 

I also noticed that even when repetitive behaviors has decreased a lot, they are still on the way interfering with Tommy learning new skills. I noticed it in the video of washing hands while I was editing the video. He was stemming during the transition form one step to the other. He was a able to do it with minimal physical intervention from me, I just intervened by passing the towel to him because he got cut up on verbally stemming and flapping hands, which makes me think that he was proud of himself. However, decreasing receptive behaviors should be priority at home as well as school because it is interfering with the leaning process, but I will have to figure out what it is the most appropriate way to address it based on neurodevelopment.

Potty Party, Steps for success (Part 2)

In my search on how to work with Tommy on potty training, I found out about Ashley Hickey. She specializes in potty training kids with special needs, specially those with Autism. She uses a very intensive method. The child should go to the potty every 5 minutes and wait on the potty for 10 minutes. Gradually, the child gets more time out of the potty as he or she progresses, so usually the second day the timer is set up every 30 minutes and then 10 on the toilet. But this will take a lot more time with Tommy. Mrs. Hickey has an potty training informative video of her intensive method on BabyCenter.com. There is also How to Potty Train Your Child videos featuring by Mrs. Hickey at howcast.com. It is a set of 48 videos with a lot information about her method. 

Potty Party, Steps for success

The boy doll is learning to use
the potty like Tommy

Special Place Set-up

Mrs. Hickey recommends a special place set-up as a waiting area for Potty Party. Having a Special place set-up near the bathroom reduces the ratio where the accidents would happen. But the third day was hard to keep Tommy in this area. Probably it was because he was starting to feel sick.

I enjoyed this area because I was able work on many subjects, such as: math, fine motor, soccer (video modeling), pretend play, etc. I think it didn't too much thoughts on what activities to bring this area, which it would save me time. 

A lot Underpants

I keep extra underpants under the sink and shirts shirts.
He gets extra practice on handling his clothes!

Mrs. Hickey recommends using underwear instead of pull-ups or diapers because it is what makes the child to understand the difference, which will definitely direct the child to the toilet with practice. Accidents are part of the potty learning process! Mrs. Hickey is right, Tommy looks at himself when he has accidents while he says: Oh, oh, oh! He even said one time: Oh, Oh, Potty! She also recommends for nap time or taking the child out to places that the child wear underpants all the time, just to put a diaper or pull-ups over for protection, but the child should never feel the diapers or pull-ups again.

Offering drinks

Drinking constantly increase the opportunities to practice. For a child with special needs, extra practice is crucial because they need a lot more repetition than a typical child. This part is tricky! Tommy is not wanting to drink much liquids at school. At home, I just hand his water bottle and he drinks fine. But there is something about Tommy's drinks, his drinks have to be very cold. So I always put a lot of ice cubes in his water bottle. He likes coconut water, apple juice and mineral water. Lately, I have been doing tea for breakfast and he is drinking them fine, but they are more ice-tea than actual tea. The teas he has tried are chamomile and lavender and Licorice root and he is drinking them fine. I will be experimenting with different tea flavors during our potty party.

Reward Box

I gave a reward box to the school staff,
so they can work on potty party at school, too.

This is a big part of the Potty Party by Ashley Hickey. She says this has been the hardest part while working with kids with spacial needs. The child should get a reward right after he or she sits on the potty. 

Tommy was involved in the processes of gathering his rewards. The successful rewards are the medals, the stickers and the ice-cream. I give him his reward right after the timer rings. Tommy enjoys choosing the stickers! He is putting the stickers on his shirt by himself, so it also a natural way of working on fine motor skills and including him to be part of the whole potty learning experience.  

Natural consequence

Tommy is doing laundry.
He is washing his dirty underpants 

Instead of punishment, Mrs. Hickey, works on natural consequence. It is basically that the child learns to be responsible by cleaning his or her own mess. Tommy doesn't like this part, and who likes to clean yucky things. I remove the yucky stuff first and he is in charge on wiping the area with disinfectant wipes (team work).

His special needs shouldn't be used as an excuse that he cannot learn about consequences. Baby him doesn't help him at all, it just make him to stay in his inner world even more, which it is supported by the work Communication Partner by Dr. James D. MacDonald who is an expert in communication issues in kids with special needs.

 This is also a way to include him in his environment, 
to be part of he whole potty learning process as well as
to work on fine motor skills.

Consistency

This is very crucial for potty training success. Everybody should be doing the same, including baby sitters, caregivers and school. I already have a meeting with school and we will try to be as much consistent as possible. But I know it is going to be difficult during our normal routine. I also have to focus on Francis and I work full-time. But I am planning to get him to wear underpants all the time when he is at home, so he will be on underpants as soon as get comes back from school. 

I decided that I would be working on a Potty Party a month ago, so I set the day for September 10, 2016. But Tommy had to stay at home on Friday because he had a fever the day before, then I gave it a try to our potty party a day before.

I will give a updated about our progress in my next post. I feel very confident with Tommy's progress, considering that he is fighting a bug and he hasn't been potty trained for so many years makes harder to break the habit, but I feel great that I stated this. 

The issues we are having are very common during potty training, but I am not an expert in this matter. I already contacted Ashley Hickey to find a way she can work with me. I do believe her method works. She has trained hundred of children of all abilities versus me that it is trying to train one child. His little brother doesn't count because he was too easy and he understood the concept of potty training before I worked on it. I truly need extra help, but I am fully confident that Tommy is capable!

Potty Party, Gathering Supplies (Part 1)

Gathering supplies and getting the house ready for our potty party has been fun. I took Tommy to buy new underwear and a potty seat last week. He did really good, we went to two stores to get underwear, and then, we went to target to get the potty seat. We usually get the shopping carts at target, but now that Tommy is more comfortable to go shopping, I want to face out the shopping carts. So we walked in to Target, he immediately stopped and looked at the shopping carts. I thought: "it's not going to work." But I told him that we would walk instead, it would be quick. So he complied! What a relief! When we found the potty seat that I wanted, Tommy helped by carrying the potty seat to the cashier. I am working on him by part of our shopping experience, so he also have to carry the shopping bags. 

Gathering "Potty Party" supplies at a local Target Store
Mom could capture the moment in video!

Potty Training Set-up

Cleaning supplies

I fixed under the bathroom sink like my cleaning warehouse. 

Extra paper towels, extra disinfectant cleaning wipes, 

extra underwear, extra shirts and extra wipes.

Where Potty Party takes place

We spent 3 days in the bathroom.

What I liked about the intensive program

is that reduces the area for accidents.

Most accidents were 6 ft away from the bathroom.

Activity Basket

I keep this basket in the bathroom for Tommy's entertainment

 while we wait to say hello to pee or poo! It has music toys, 

the potty time songs lyrics, Spanish books, etc.

Progress chart

At school they mention a progress chart, so I have this

one from the pass. I noticed that Tommy likes every time that

 I mark that he has done good. So  I am getting a new progress chart.

Vocabulary

The Potty Time with Rachel Coleman has helped a lot

in creating the foundation for the potty training vocabulary.

List of words: wet, dry, potty, timer, yucky, toilet, bathroom,

wash, wipe, faucet, soap, towel or paper towel,

underpants or underwear, poo-poo, pee-pee, pause,

reward, medal, sticker.

I use the phrase recommended by Mrs. Ashley Hickey,

who is a potty training specialist:  

"Wet pants are yucky. Let's change into dry underpants."

Looking for books about potty training to read to Tommy, I noticed all books are for toddlers. None of the books that I found where for an older child who has passed the age appropriate for potty training due to medical issues. The toddler books where not that interesting for Tommy, so I realized that the illustrations are not enticing him because he cannot relate with the younger characters. There are not many books with illustrations of kids that look older than toddlers and using the actual toilet. I kept searaching and I was able to find two books that really cut his attention because the main characters are boys and look older than a toddler, the stories have some sense of humor. He loves "Bloop, bloop goes the poop."

Getting all the information and supplies to potty train a child with special needs is not easy. It can be overwhelming. There are so many methods and ways to potty train a child, but every child is different. There is not guidance of potty training a child with special needs with challenges who has also passed the age appropriate for potty training and struggles to communicate due to his coexisting conditions. Searching for simple and short potty training method is how I found Ashley Hickey, who specializes in training children with Autism Spectrum Disorder and has had potty trained hundreds of children of all abilities, including: Down syndrome, visual impairments, Apraxia, Cerebral Palsy, Muscular Dystrophy, Prader-Willi Syndrome, among others. I believe that her intensive potty training method works for Tommy. I already contacted her, so we can have a consultation to effectively potty training my precious boy.

Autism and Down syndrome combined is not typical Down syndrome neither Autism along.

Autism and Down syndrome combined is not typical Down syndrome neither Autism along. Having these conditions combined brings more challenges and deficits in all developmental areas in Kids Down syndrome and Autism than just having Down syndrome along. There are more behavioral and social challenges than what is observed Down syndrome along. There is even lest room for hope for a kids with this coexisting conditions.  Here is an article of a dad who talks about his experience raising a child with Autism and Down syndrome:

https://blog.autismspeaks.org/2012/02/29/diagnosis-relief/

But regardless the odds,  I keep fighting for a better future for my son.

Overcoming the ODDS: Part 2

"I see a light at the end of the tunnel"

Autism is the hardest thing that I have to deal with in my life. It has been hard to see my son not able to connect with his environment neither with people and his family, which includes me. He didn't like me for a while. Now, I know he loves me! When there is time of struggles between Tommy and I, it feels very typical sometimes because I have the same struggles with Francis. Of course, there will always be struggles between Tommy and I because I am also the person whose challenges him the most and the person who disciplines him. Tommy is re-learning self-help skills not matter how long it will take, his dual diagnosis is not an excuse for him not to be independent, it makes the process slower and challenging, but not impossible. If Tommy doesn't behave, he gets disciplined and many times he has gotten in time out. I am also his biggest advocate because I believe on him beyond the labels. I am also his biggest cheerleader because I am immensely proud of him! Because I am his mom first.

We knew since Tommy was a baby that he has aptitude for being a swimmer. So his first swimming lessons were at 9 month old. He has always enjoy the water. But after he got Autism, I truly didn't know what to do to help him. So my mother instant said: Go for swimming lessons. I talked to other mom whose daughter has Down syndrome and recommended a great swimmer instructor who is also a Special Ed. teacher. Her dedication to teach kids with special needs to swim is above and beyond. The first year in swimming lessons was extremely hard for Tommy because of Ataxia —The Ataxia symptoms where shown during the hospitalization in 2011, but they were completely overlooked by traditional medicine. We spent about 3 years in swimming lessons, and it was all worth it!

It was the first time Tommy joined his cousins to swim and Jump (8/27/2016)

Swimming under the water is something 

Tommy has been trying to learn on his own since 

last year. It was great to watch him following his

cousins because he was learning from them

how to swim under the water. But the best of all being part of 

what the rest of the kids where doing.

Overcoming the ODDS

My son's dual diagnosis is not an easy route to travel, because it has a lot of ups and downs, bumps and wholes, sometimes very high bumps or vey deep wholes that make me tumble. But when I ask to my self, Why me? I can easily find the answer. I am not a quitter, I am a fighter. I was chosen to raise my son because I have the courage to go in opposite direction, when most people thing that there is just one way to do things, I think there are multiple odd ways of doing things with outstanding results.

Since having my son with T21 almost 9 years ago, higher expectations are becoming  part of the norm for a family and society about a child with T21. Can we say the same for a child with dual diagnosis? No, there is not much high expectation and not much hope for a child with dual diagnosis, Down syndrome and Autism. Autism completely overshadows Down syndrome. Many people even don't know that this is possible. While others think that the dual diagnosis makes them even more r-word. There are not specific intervention for these kids and there is not enough sciencist research to understand the interaction of both conditions. I know that outside of my bubble, there is not hope for a child with dual diagnosis in our society!

Should these paradigms stop me? Of course, NO. This is the fiul that keeps me going. After all this year living with my son with coexisting conditions, I know that there is hope. This will be the legacy I will leave to the future generations to come. There are many stories of kids recovering from Autism, but I cannot say the same from a child who has Down syndrome and Autism. Since he was in the womb, he showed me that he will be an overcomer, a true fighter.  I just want to share this video of our Journey and how he is overcoming many challenges related to Autism.

Neurodevelopmental approach (Part 1)

Responsible parenthood is what make parents to do their best for their children to thrive. Parenting, it self, is challenging. Parenting a child with special needs brings challenges that sometimes one can not even imagine. It is definitely more complicate that parenting typical kids and it gets multiplied when the child has multiple diagnoses. 

For me to get into that balance has taken years and it is not fully achieved. I wasn't fully adjusted to leave in other country, when my son was born. So many changes passed in my life too quick! I had to get adjusted to a whole new lifestyle shared with therapists, medical follow ups, and a whole new language related to the therapeutic field. Then, Autism came to our journey that truly made me tumbled. The grief I felt is hard to explain. I was sad, angry and scared. I usually don't show my emotions, so I know people around me didn't noticed much, except for my sister, my mom and my husband. It emotionally drained me. It was rough! But I was needing that time to grief.

Even in the worse moments that I felt down, I never stopped working with Tommy and searching for help. When his neck lost the cervical curve, I went to every single appointment twice a week for months after my full time job while my youngest was still a baby. The nutritionist ordered to change his diet and his new diet was in place in a week. Then, I began to formulate my ACTION PLAN to take be in charge of Tommy's intervention, which it took me two years because it required changed my worked schedule and worked it out around Francis going to school. This is when my emotional healing began.

Today, I has became the main provider for my son's therapeutic approaches and I am so glad that I have done it. The neurodevelpmental program is not just helping Tommy is also helping me. We are conquer every challenge together.  The neurodevelopment program is about "COMMITMENT" and it is not SELFISH as most traditional therapeutic approaches. I say selfish because in most traditional approaches there is a professional who is hired to work with the child, and this take away a lot of family time. A child with special need as any child, had more opportunity to grow and develop with stimulation from the family and not from professionals. The neurodevelopment program train the parents to be the main providers, so development can be nurture at home during the family routine, so everybody can be part of it.  I believe that it has been crucial for us as a family because it has allowed Francis to be part of this program. It is so cute to see him sometimes trying to help with the activities. The same program has bring them together because Francis model some of the activities for Tommy and it also has open a window for them to interact, something it didn't exist before. Tommy's over sensory stimulation didn't allow him to welcome his brother into his world. Today, it is a completely different story. One day, Tommy's feelings got hurt because Francis told him: 

"I don't want to play with you." It broke my heart to see Tommy sad for it, but Francis had a reason. I intervened and I told Tommy when he was pushing Francis that he was hurting Francis. It didn't took long for those two be happy again.

What is a neurodevelopmental program?
It is a program designed for a child to strength and nurture developmental growth in communications (speech and language), sensory processing, auditory processing, life skills fine and gross motor skills and academics. It also finds way of preventive care to avoid illness that can stop development. This is not “formula program” to match a label because it looks at the child as individual; therefore it identifies neurological differences  to work on and build a stronger neurodevelopment. 

I would like to share her successful story with the neurodevelopmental program by by Laura Gamroth:

"Today we are so grateful for the path we have chosen for our daughter. There are some areas that we still need to work on.  For example, although we are able to understand her and she often speaks in 6 or 7 word sentences, we are working on her articulation.  Physically she is doing very well and has always been either ahead of or at the early end on the Trisomy 21 milestone charts however it is noticeable in a group of her peers that she doesn't run as fast or  jump as far.  
On the other hand, academically, she is much more advanced than any four year old that I know.  Besides reading so well she is doing math at about a kindergarten level and is able to find all of the continents and many countries on a map.  She is able to communicate clearly and talk about everything from her recently conquered fear of heights to what happened today at preschool, what activities we did on a recent holiday and what her favorite clothing choices are.  She is able to read a menu in a restaurant, order and discuss her choices with the waitress unassisted.  Physically, she runs, jumps and her latest accomplishment is riding her tricycle.  Our daughter goes to a typical preschool and has taken swimming lessons independently.  She recently started playing T-ball and I'm sure the coach has no idea that she is sporting an extra chromosome!" Click here to read the full story.

I will also share the list of neurodevelopmentalists that has been putting together by Andy Durkin. Click here to see the full list in Andi's blog. 

The bumps in the route are higher and wholes deeper, but finding a balance is the key to succeed and overcome those challenges.

Understanding Autism (Part 2 The Environmental side of Autism)

A while ago, I wrote about the genetic side of Autism related to my son according to our family health history and scientist research. I will now post about the environment and its role in Autism. 

The environmental side of Autism

Do environmental factors can play a role in Autism? The answer is YES! According to the new studies both, shared and non-share environmental factors can play a role in a child developing Autism. Howsoever, they are not the cause of autism. This stills reminds unknown. Click here to read an article about the study.

Autism itself won't manifest until the genetic factors get in contact with the environmental factors If a child is genetically predisposed to have Autism, so a toxic environment is "the straw that brakes the camels back." I am just glad that now I have found a research that validates that shared environmental factors (chemical pollutants, particularly metals, pesticides,etc) and non-shared environmental factors (medications) play equal roles in Autism than genetic factors.  Conventional doctors cannot keep denying that some medications and chemicals can play a role in Autism. Therefore, EPIGENETIC IS REAL and it is not a scientist theory. 

The more I search, the more I get convinced that Autism is the result of our disconnection with mother nature, we have forgotten we are part of an eco-system. We keep contaminting our environment without remorse. Contaminating our environment is contaminating ourselves! People, like my son, who have compromised cells are not able to detox toxins properly, and this can lead to serious health issues. My son's compromised cells are very evident just because he has an extra chromosome that alters every single cell of his body; therefore, his health can deteriorated faster if his mitochondria function gets altered by toxic chemicals or drugs.

According to the National Autism Association: 
Based on parent reports – including parents representing the National Autism Association – sharp regression occurred in their children directly following immunizations.  While many parents can provide detailed accounts of regression in their children following vaccination, other parents have reported autism in their unvaccinated children. More sparsely, parents report swift regression following an illness, use of antibiotics, and random chemical exposure – such as carpet cleaning. Though published mainstream science fails to acknowledge a causal link to any of these specific exposures, it’s important that parental accounts be carefully considered.

I highlighted the lines above because it is where we are. Tommy's regressions began to manifest after an illness and the use of antibiotic, steroids and sedative. He never before had these medications. The changed was dramatic that I noticed right away in the hospital back in 2011,

Moving forward to protect my son from share and non-shared environmental factors: 

• Essential oils. I had my first encounter with essential oils while I was doing MendAbility, a home based therapy for Autism. Then, our new doctor has brought it up as a way to treat Tommy's internal inflammation. I am learning about this ancient medicine. Our modern medicine even has a bast scientist data to support their effectiveness, but they are not being used because they have been replaced by drugs. 
• Going Green. I am working in decreasing toxicity in our home because indoor environment is more contaminated that outdoors. An environmental doctor recommended to avoid plastic. I decided to dig dipper in the content of avoiding plastic and my foundlings truly have surpassed me. There are 7 types of plastics, which are used in food, cosmetics, etc. Type 1 and type 2 plastic are considered the safer plastics for using in food containers. So I looked into the compounds to make type 1 and 2 plastics, and they have a common ingredient, which is 'Polyester' (the same that it used to make fabrics). Then, I wanted to know what is used to make Polyester and I discovered one of the worse contaminates for the human body that can interfere with the proper function of the immune system, which is know as PETROLEUM. We also made a toxicity test and two chemicals found in plastic were found in Tommy's body. So BPA fee is not enough! To avoid plastic is not easy, so I am doing this slowly, but surely.

I have always thought that humans are getting disconnected from nature and this is what is causing our health decline and eventually our extinction. In my search for answers and ways to help my son I have found Dr. Shetreat-Klein and she has a lot to say about our connection with dirt and this brought to my mind these biblical passage:

"...for dust you are and to dust you will return." Genesis 13:9

According to the bible we are made by dust, and there is scientist data supporting we need "dirt" to be healthy. Dr. Maya Shetreat-Klein explains why dirt is so import for our well being, specially for developing brains. There are many microorganism on the dirt that are crucial for our health and properly gut function. She released her book The Dirt Cure on January 26, 2016. She explains about how important is keep contact with nature, so get outside as much as you can. I has personally experience that Tommy feels better when he is sick if we spend time outside. Enjoy the video of Dr. Shetreat-Klein, who has a lot to say about "the Dirt Cure."

IT IS TIME TO DO SOMETHING!

Conclusion

Now, I have a better idea why AUTISM did strike my son. I know that there is enough genetic evolved in Tommy's autism diagnoses beyond his genetic compromise system due to Trisomy 21. There a lot of family members who health history is linked to mitochondrial dysfunction. So I know that the possibilities Francis may be a carrier for Autism is there. Francis is 10 times more likely to develop Autism or my grand kids, Thinking in grand kids is crazy because Francis is 4 years old, but from now on, I will be more environmental conscious, keep learning about Autism and spreading the word. 

Doctors will listen to us, parents like me, because we won't stop fighting for our children. We are not laying, we are the ones suffering the monetary demand that  Autism brings, we are the ones raising a child without hope for a future. Non-shared environmental factors shouldn't be used undiscriminated, specially antibiotics. We won't stop racing our voices until something is done. Bacterias are become too resistant, so the market for antibiotics will be in jeopardy and pharmaceutical companies will be forced to substitute antibiotics to something else. I am already into the conquer of understanding essential oils. There is a lot of scientist data that support the benefits on this oils in treating infections and even cancer.

Unfortunately, I don't see nations across the globe working together in this matter in the near future. International Agricultural regulations and laws need to be implemented world wide, regulation of using certain medications and newborn screaning should be impleamented because everybody is genetically predipose to DNA mutations and some people has metabolic issues that make hard for their body to metabolize certain medications, which is what doctors called Side effects. 

To everyone out there, we cannot keep living isolated of the catastrophic effect that Autism is causing to the human race. The statistics are very alarming, 1 of every 100 kids are diagnosed with Autism world wide. This should be an international top priority because the future generations are in jeopardy, which is very possible we as humans may be in the first stage of extension. People are cluless how much Autism can affect a human being. Click Here and here, now you are a witness —and maybe soon, Autism will victimize someone close to you. 

Now, it is your choise to be part of the problem or become part of the solution by protecting our environment by just being more aware of what products you buy that can be toxic. If you are a farmer, PLEASE consider to avoid the use of PESTICIDES in your agricultural practice as well as GMO seeds. Today is my child, but tomorrow could be your child that can become as the kids you saw in the videos, AUTISM doesn't discriminate!