Tuesday, August 23, 2016

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.

video

Wednesday, April 6, 2016

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.

Monday, February 1, 2016

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! 

Wednesday, November 11, 2015

Balancing parenthood between challenged and neurotypical siblings

When Francis was born, I was excited because Tommy will have a little playmate. Suddenly, Tommy's Autism diagnosis became more predominate than the arrival of my new baby. The first two and half years of Francis coming into our life's were not easy. Tommy struggled so bad to be around him. Francis was an over sensory stimulation rather than a little brother. My evenings used to be stressful. It was so hard to hold Tommy so he could not hurt himself by hitting his head against the concrete while Francis was crying and was needing comfort. Tommy could not stand Francis's baby cry due to sensory processing issues.  If you asked me, How could I handle it? I honestly don't know. But I can tell you that following my mother instincts is what has brought this issue to an end. 

Even when Tommy has special needs due to his coexisting conditions, I also recognize that Francis has his special needs as any individual, which are as well as important for me and my husband as Tommy's needs. 

Things that have help me to find a balance for Francis are:
  • Including Francis to take an active role in Tommy's neurodevelopmental program. This program welcomes Francis to be a partner in helping his brother rather than excluding him like most conventional interventions. For example: He models the difficult activities for Tommy. I can do sensory stimulation for both kids, which has turn out in something funny for the boys. It is also helping them to get closer as siblings because it is reorganizing Tommy's brain, which is allowing them to interact in more structured play. Francis needs a relationship with his brother regardless Tommy's special needs. Any other kid won't replace his big brother. 



    Francis was so happy that Tommy for the first time
    played with him pretending to cook. He implored me to let them play a little longer. 
    So they went to bed very late that day, which is not usual when they have school. 

    Here we are working in a video modeling for Tommy,
    which will get done at some point this week.


     I made Tommy's bed and just a few minutes
    latter this is how I found them on Tommy's bed and the bedding set 
    was all over the floor.


  • Quality time rather than quantity time. I am busy all the time, since the time that I wake up to the time I am going to bed. But I always make sure to have short period of times to spend with Francis and incorporate him in what I do. I play, dance, snuggle, chase or teach Spanish to him.
  • Time just with mammy. This is a day or a few hours in a specific day that I can only spend time with Francis. He even has requested other Mammy only time. For example: we spent about 3 hours in Toy R' Us looking at Toys last Saturday. This is something he can just do with mammy because daddy doesn't like to spend too much time in a store. I took a vacation day this year to only spend time with Francis and we went out to eat lunch at Francis's favorite restaurant.
  • A trusting relationship through endless conversations because communication is what brings people together. Francis is struggling at school and I didn't understand why. We had a long talk and he was able to express his feelings and I could figured out that it is due to emotional issues.  He wants to stay at home with me rather than going to school, he misses his best friend who got transferred to other school and he has to compete with other kids for the teacher's attention. This is tough for a little person, so we made a deal (he is a negotiator and he always have to win). I would get a big reward if he will show to his teacher everything he can do.  I told him when he is missing me he should remember my big tight hugs and kisses. So I squeezed and kissed him at that moment to create a memory. I contacted his best friend's mom, so we can organized a playdate, and we have been practicing how to approach the teacher if he has questions. A week later, the issue is almost solved and he got his reward! But the best of all is that the other day he came to me and asked me: Mammy, Do you know what you should remember if you miss me? I was completely blank: he squeezed and kissed me 😊.
 This is the board by the classroom door, look for Francis!

 According to Francis, he was writing the grocery list!
I knew he was struggling for something more than just him not being able 
to understand the class and his writing is a proof of it,
We don't work on writing at home and school is just focusing on writing their names.
  But he can write pretty much all the letters of the alphabet without previous practice.  

Francis loves my husband and I in the same way, but he is mammy's boy because he knows I understand his feelings and struggles. Since I remember my mom and I have had long conversations about everything, including our feelings. Francis and I has our conversations about his little world and he knows that for me it is important. So he is able to communicate his feelings, dislikes, opinions and suggestions because I always take them seriously. Francis and I always are talking about our feelings for each other. He even tells me if I have hurt his feelings. I allow him to cook with me even when it may take longer and he has the confidence to tell me: "teach me to cook" because he knows I will listen to him and I won't ignore his curiosity. I accept his suggestions and opinions on how to help his brother. For example: Tommy struggles to be in clothing stores, which I think it is because it is visually overwhelming for him. One day, Tommy went crazy at Macy's. I didn't know how to calm Tommy. Francis Immediately gave me a solution: "Mom, my song." I said: "you are right." I quickly looked in my phone for the song, "LIFE LIKE A WARRIOR" from the movie Walking with dinosaurs (This song perfectly explains Tommy's journey). Francis's quick thinking saved the day!

I do believe God allow things to happen for a reason. If Tommy wouldn't have special needs, Francis and I may not experience the same connection and I may not pay close attention to his emotional needs. We are building a closer relationship where I am learning from him. One thing Francis has taught me is to CELEBRATE everything for little or big. It feels great to be able to be part of his world. It is not always an easy task, but it is all worth it. 




Sunday, January 18, 2015

Where Autism and Down Syndrome meet: Mitochondrial Dysfunction (Part 1)

Being a mom of a child with a genetic desoder, it is like being a soldier. I don't go to the battle feilds; howsoever, I have my own battles against insurance companies, doctors and a mainstream health care system that refuses to accept that genetic is complex, so the "one-fit-all" health policies may not be for everyone, specially for a child that has a GENETIC disorder. We, parents with a chid with Autism, have raised our voices to let people know what has happened to our kids after they have received a vaccine or a medication, and then, our kids suddenly regressed without an apparent reason. To any mom out there: You should know that there is a reason, your child may have MITOCHONDRIAL DYSFUNCTION.  

MITOCHONDRIA DYSFUNCTION (PART 1)


What is 'mitochondria'?



Mitochondria is specialized structures unique to the cells. They are like batteries, that give energy to various functions of the cell and the organism as a whole. So without proper mitochondrial function we struggles with endurance and complete physical activities.

According to the the United Mitochondrial Disease Foundation, Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

Can medications interfere with the mitochondria?

Yes! There actual a huge list of medications that can interfere with the mitochondria function. Click here to see the list that has been put out for the public by Mitoacion.org.

Scientist research have identified that kids with Autism alone or Down syndrome alone have issues with the mitochondria as an underline cause of many of the issues these kids face. Some drugs, but not all, have been identified to interfere with mitochondrial function. All the vaccines safety studies having conducted in patients without Down syndrome alone or Autism alone. How doctors can guarantee that vaccines are safe for a child with Autism or Down syndrome if there is not a vaccine safety study that includes these kids?


We know now that non-share environmental factors have 50% responsibility in causing Autism. But more studies need to be done with a population with a compromise immune system and vaccines, because vaccines are in the non-share environmental factors category. We know that the in resent years Mitochondria Autims has been identified a s subtype of Autism. The kids with mitochondrial Autism are the ones began to show signs after an infection. medication has interact with their immune system.


Even when there is not a vaccine study proven the connection with the mitochondrial dysfunction, it is scientifly proven that mercury and aluminum can damage the mitochondria, which are key ingredients in vaccines. Pharmaceutical companies may claim that the dosage of mercury and aluminum are very minimum in the vaccines, but what happen if the child has an underline issue with the mast cells. If the child has an issue with the mast cells the child can have an allergic reaction to Mercury or Aluminum, which means that the mast cells attack the allergens. This can produce an anaphylactic or sensitivity reaction. An anaphylactic reaction is life treating. But what happen if the child has a sensitivity reaction to Mercury or Aluminum. The allergic reaction will be slowy and progressive rather than quick and instant like the anaphylactic reaction. A sensitivity to an allergen can even take up to 6 months to manifest because the allergen is still inside the body. The slow reaction can cause internal inflammation, which includes the brain. The inflammation in the brain ins known as ENCEPHALITIS that has also been linked to Autism. Inflammation is the underline cause of many health issue. Therefore, If the patient already has  a disrupted methylation cycle will result that toxins from mercury or other heavy metals won't be efficiently be detoxed, so this toxic chemicals can contribute to mitochondrial toxicity that impterrup the normal mitochondrial function, which result in the inability of the patient to function. This also raise other question, if the child has methylation issues then, Could the child has a MTHFR mutation? So vaccines may not directly cause Autism, but it may contribute to it. 


There is other underline consequesnse that may happen to some kids, but the medical community or the media don't talk much about this.  It can happened that the viruses in the vaccines can infect the gut, which it has happened in some patients. One thing to remember, One of the big manifestation of Autism is GUT ISSUES. We should always remember that genetic is not a cookie cutter, so there is a lot of genetic information merged in a human being which is different from person to person, so following "common sense", every human body react differently to medications/vaccines. Pharmaceutical companies know this!


My kids have all their vaccines, Francis had a vaccine reaction at 3 month old. So I began to delay his vaccines, and he never had another reaction again. Tommy has all his vaccines as well, we didn't noticed any reaction when he was given the vaccines, but we did see it when he was in antibiotic during in 2011 when he got hospitalized due to RSV. Yes, there are certain antibiotics, steroids and sedative that interfere with mitochondria dysfunion.



I am not against vaccines, but they should be used with caution and Parents should be a lot more educated about underline issues as the ones I have explained above. Instead of making this a big controversy, every family should be giving the option of genetic testing to check if a newborn has healthy cells with an apropiate methylation cycle to detox toxins from mercury, aluminum or any other allergen before a newborn is vaccinated. This options is not giving to parents by Medical professionals or even the GOVERNMENT. WHY?

Here is what the court says about a case  that was proven to cause Autism due to inflammation in brain caused by a vaccine:


"...The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).  
Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of “relatedness;” insomnia; incessant screaming; arching; and “watching the florescent lights repeatedly during examination.” 
Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.” The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism. 
In its written concession, the government said the child had a pre-existing mitochondrial disorder that was “aggravated” by her shots, and which ultimately resulted in an ASD diagnosis..." Click here to read the full article.



ACTION PLAN
There ere are possibilities that my son may have mitochondrial dysfunction, MHTFR mutation, as well as some degree of Encephalitis; which has empowered me to find the help he needs. Howsoever, my new battle has been getting a doctor who specialized in mitochondrial dysnfuntion, which there are not many doctors trained in this field or doctors who are willing to treat kids with Down syndrome. So I have not stopped searching for a doctor and I found a local functional doctor who truly knows about human biochemistry, so we have been working on shifting and balancing Tommy's biochemistry to support his mitochondria and his entire body. The improvement is huge because  Tommy's gut is beginning to heal and it stated to happened in just two months working with our new doctor. After 5 years working so hard in healing his gut, our hard work is being rewarded! It feels great!

I talk to our new doctor about my concern of Tommy possible having a MHTFR mutation (I think I may have it, too).  He believe the problem is not the genetic, the issue is environmental factors which is "the straw that breaks the camel's back."I think in the same way because I have experienced since 2011.



  • Decreasing toxins level in our home.Tommy's toxicity test showed that he has high levels of two chemicals found in plastics. Therefore, I am beginning to put in boxes all toys made by polyester and plastic (Polyester is a synthetic fabric made with plastic).  I already replace most of plastic kitchen utensils with stainless steel, bamboo and ceramic. I am also avoiding the use of harmful cleaning products or any conventional product because it you read the label and they ingredients have a weird sciencitc name, them it is scienteti, harmful and a chemical. 
  • Purify in the air. I am getting plans to purify the air, which includes essential oils.
  • Avoiding mainstream medications such tylenol, antibiotics, etc. to the maximum extent possible. Even our pediatrician has told me to not give tylenol to the boys, hah!. We use mainly homeopathic medicines and I am glad Walgreens is selling them.
  • Reducing internal inflammation with essential oils and pharmaceutical grade supplements. Thyme is a great oil supported by a sciecist study. To confirm if Tommy has encephalitis (brain inflammation), spinal fluid samples should be taken and I don't want him to go though this medical procedure. Our doctor give me order for blood work so we can confirm inflammation in his body with a less invite testing.
  • Healing the gut, healing the brain. We have made big progress on it. He is giving signs that his guts is starting to heal and his broken lining is getting repaired because his body is producing his own good flora/microbine.  

Please send prayers in Tommy's way because this is a long journey with a lot of bumps, so I need the strength, the time and the money to keep going with my long list of intervesnions that are not covered by insurance. Regardless the bumps, my action plan is working in my son's benefit.

Tuesday, January 6, 2015

Best Christmas Brake Ever!

I just felt a relief during the Christmas break. Because I noticed many small changes on Tommy. When I began my journey with Tommy's Autism diagnosis, I didn't know what to do or what to expect. Sensory processing issues was something I wasn't understanding very well. I couldn't understand why he regressed so much or why he stopped being affectionate. Today, the story is switching to a child who is definitely getting more and more out of his own world. Now, I do believe that kids with Autism doesn't have to remind in their own world, there is a window to pull them out. 
Tommy enjoyed for the first time Christmas morning while opening presents. He actually open some of his presents. For the first time, we had a better idea what Tommy would like for Christmas. He is an animal lover, so we got some stuff animals (a Cheetah, a Koala, and orangutan). He also got books from Llama Llama and many more presents. He was very excited with his presents. It was very exciting to watch his faces expressions that he liked his presents. He never before showed this emotional expression for a present given to him.
He also did good in our family reunions with our extended families. He was more comfortable being around people and the noise wasn't batter him as before.  He greeted his Grandma, who lives in Panama, through Skype. He told her: "Feliz Navidad" (Merry Christmas). He learned to say Merry Christmas and Happy New Year.
 Taken advantage of the nice weather the day after Christmas, We went to zoo. Tommy and his little brother had so much fun. In our walk in the zoo, we could watch a Cardinal bird on a branch. He truly enjoyed watching the elephants as well as the seals. It was a beautiful day that Tommy enjoyed as he likes, being outside. But the best of all, he spent time with his little brother and when they walking around the park holding hands, I heard Tommy saying to Francis: "My brother" while looking at Francis. 
During the break, Tommy played a lot with his little brother. It was amazing looking at them interacting. They even played tug war by holding hands, which was spontaneous without therapy intervention. Tommy also was more adventurous because he practiced riding his scooter in the living room. He is getting better and better. This has been the best Christmas brake ever!







Cousins
(A causing is missing in the picture, it is hard to get them all).

Grandma

THE DAY AFTER CHRISTMAS AT THE ZOO 











I don't know what the future grant for Tommy.
Autism is a journey that I didn't ask for, and of course, I didn't want either. 
But at the same time, it has brought a courage from the inside
my heart I didn't know I had. It is not an easy journey,
but I know Autism is treatable and recovery is possible!

Friday, January 2, 2015

New Clinic research find that Down syndrome and autism often coexist

Autism (ASD) rates keeps increasing among the world wide population, which also include kids with Down syndrome (DS). A study, made in England and Wales, suggests that 38% of people with Down syndrome also meet the criteria for Autism spectrum disorder. Nearly 500 children were part of the study published in Autism Research on June, 2014.

I believe that this rate is not far from reality. Kids with Downs syndrome are at a higher risk for Autism because low muscle tone/sensory processing issues can lead to Autism, according to what I read in the book The child with special needs. They also have mitochondrial dysfunction that it is not diagnosed/treated, even when there is enough scientist data that have proven this. As a parent of a child with Down syndrome, I am in the conquered to get my son tested for mitochondrial dysfunction. Howsoever, doctors are not accepting his case as soon as they know he has Down syndrome.

Here is a good example of the exiting data about Mitochondrial dysfunction and Down's syndrome from the U.S. National Library of Medicine, pubmed.gov:
Abstract...Using astrocytes and neuronal cultures from DS fetuses, a recent paper shows that altered metabolism of the amyloid precursor protein and oxidative stress result from mitochondrial dysfunction.1 These findings are consistent with considerable data implicating the role of the mitochondrial genome in DS pathogenesis and aetiology. Copyright 2002 Wiley Periodicals, Inc.

Approximately 100% of kids with Down syndrome have mitochondrial dysfunction, which is easy to spot because most of kids with Down syndrome have hypotonia (low muscle tone) that causes extremely fatigue that make them with low tolerance to high impact activities, so they tiered easily. About 80% of kids with Autism somehow have Mitochondrial dysfunction as well. This is what mitochondrialdiseases.org says about Autism and related diseases:
(Shoffner, JM et al. J Child Neurol. 2010 Apr;25(4):429-34; Epub 2009 Sep 22) The most common clinical observation in children with both ASD and mitochondria disorder was hypotonia, or muscles with low tone, followed closely by “fatigue with activity.” They also found that approximately 60 percent (17 of 28) of these children experienced a regressive form of ASD, a rate of regression that is over two times greater than what is observed in the general population of individuals with ASD.
The U.K. study found some differences on DS-ASD than having Autism or Down syndrome alone. Which is not new for parents who are dealing with the coexisting conditions. Many parents feel they don't belong to either group because when DS and ASD are combined the challenges become more numerous and complex. According to the article, Clinical research:Down syndrome, Autism often coexist published on Simons foundation, Autism Research Initiative:
"The children who have both disorders are more likely to have trouble with small talk and to engage in compulsions and rituals than are children with Autism alone. And they are more likely to be to be hyperactive and to have emotional and behavioral problems than children with Down syndrome alone. They are also more likely to have lost language abilities and other skills they had previously gained than children with Down syndrome alone. However, they tend to be better at making social overtures and responding to other children who approach them than are those with only autismGiven these distinctions, the researchers say, people with the dual diagnoses may benefit from specialized treatment plans."
It seems that having an extra gene make kids with Down syndrome to be more resistant to not getting hard tumor cancer, having heart attack, nor suffering a stroke. It seems that the extra gene may also make them more resistant to Autism in the social area. So the extra gene may have the answers to the cure of some diseases. 

According to my personal point of view, every child with Down syndrome and Autism alone comes with a unique set of challenges that need to be addressed individually according to the child's unique needs. In our son's case, it is not much different even when he has Down syndrome and Autism as coexisting conditions. We are treating Tommy's challenges focused on his unique underline health issues commonly seeing in a child with Autism because he has them and we have done the testing that confirms this. Howsoever, we don't have the major health complications due to his Down syndrome diagnosis. We are also teaching him by focusing on his neuro-development, more than focusing on special education.

I have to make emphasis that there are more appropriate educational and medical treatments for kids Autism than for kids with Down syndrome, even when Down syndrome has existed approximately since the 5th or 6th century. According to Linda Crnic Institute for Down syndrome, it is a fact that Kids with Down syndrome have a predisposition to specific learning strengths and challenges that are not currently addressed in practice in special education.  It is even worse when the child faces two coexistent conditions. At the same time, there are not true medical treatments that target the underline health declines for kids with Down syndrome either, even when science has advanced so much. Just a very small group of parents have discovered that there are underlines causes that can be treated to improve the quality of life of kids with Down syndrome. And yes, many of the underline causes are similar to the ones observed in Autism.


One day, I went to the bookstore and I snapped this photo.
Because it pictures to me that there are not proper treatments 
for kids with Down syndrome after so many centuries.

 If you look at the bookshelf, there are many books about Autism
and what you can do to help a child with Autism. 
If you look at the bottom shelf you will spot the book 
"I'm Down with you," a beautiful inspirational book about 
having a child with Down syndrome
 and the only book on the shelf that about Down syndrome.

There is not a book on the shelf about what you can do
 to help your child with Down syndrome to reach his full potential. 
Books about Down syndrome and Autism as
coexistent conditions almost don't exist

THE SKY IS THE LIMIT!

Wednesday, December 31, 2014

What Will Life Be Like for Your Child with Down Syndrome?

Thanks to many parents that have been before me, parenting a child with Down syndrome, we can stand by our kids today and raising them in our homes. The loves for these amazing humans give us the courage to fight for them to have a place in this society. Today, we are changing people minds, including doctors. There are still many doctors that need to learn how to give the news to expectant parents about their child's  genetic disorder. Howsoever, some doctors are going beyond the norm and respect the lives of individuals of Down syndrome.

The first thing, we all do as soon as we get the positive results for Trisomy 21 is going online and absorb all the information available possible. I did it! I don't regret. Howsoever, I wish when the news was giving to me that the doctor  would give me a beautiful welcome pack with real stories of kids with Trisomy 21 as well as a list of Parents support group because the true experts in this matter  are the parents. Today, our local Down syndrome has make this possible for new expectant parents and Tommy was in the cover of the firts welcome pack distributed in the metropolitan area in 2009.


More and more Doctors are understanding that individuals with Down syndrome are not a second category citizens, that they have the same rights to enjoy life as everybody else. One doctor who truly understand this is Dr. Linda Crnic. She devoted all her knowledge on pediatrics and psychiatry for the benefit of improving lives of kids with Down syndrome, which gave her a good international reputation for her research in Down syndrome. Unfortunately, her life got short due to a tragedy biking accident on September 11, 2004. Howsoever, her input and passion to improve the quality of life of kids with Down syndrome staid to inspired others, which made possible the creation of Linda Crnic Institute for Down syndrome in 2008. The institute is part of School of Medicine, University of Colorado Anschutz Medical Campus.


Currently, the Linda Crnic Institute for Down syndrome is the top leading research organization dedicate to Down syndrome. Dr. Tom Blumenthal is continuing Dr. Crnic legacy and he is working really to improve cognition and health issue in kids with Down syndrome. 

"The avowed purposes of the Crnic Institute are to “eradicate the medical and cognitive ill effects associated with Down syndrome by the year 2017” and “to significantly improve the lives of all people with Down syndrome and their families and their communities.” Our intention is to accomplish those goals, but when exploring the unknown, one never knows what lies ahead. Explorers can’t promise anything, except that we will do everything we can to accomplish the mission. It is time for research to start benefitting people with Down syndrome, and there is reason to believe we can accomplish this..."

If you are expectant mom or dad, I want you to know that there is hope and science has the clue in how improve our kids outcomes and quality of life. I want to share with you:

"What Will Life Be Like for Your Child with Down Syndrome?by Linda Crnic Institute for Down syndrome* 
  • The life expectancy for individuals with Down syndrome is 60 years of age.
  • Most individuals with Down syndrome finish high school, and many complete a transition to work program or go on to attend community college. Some individuals with Down syndrome complete a four year college and the occasional individual with Down syndrome attends graduate school. 
  • Self-advocates with Down syndrome describe their life and their achievements using power point or speak from notes.
  • Work placements for individuals with Down syndrome are less likely to include sheltered workshops and more likely to be in contact with the community.
  • Many adults with Down syndrome live independently, either in group homes, with roommates or with their spouse.
  • Experts in education for individuals with Down syndrome stress inclusion with typical peers beginning in preschool, and continuing through elementary school, middle school and high school. The performance of both typical children and children with Down syndrome improves with inclusion.
  • Children and youth with Down syndrome should be offered the opportunity to participate in sports, dance, theater, music and art. Participation will help these individuals to develop friendships and self-confidence.
  • As parents, you will need to be strong advocates for your child with Down syndrome to ensure that he/she will be able to reach his/her potential.
  • As parents, you will love your son or daughter with Down syndrome and you will be proud of them. You will feel that your outlook on life will be more positive because of them. You will feel that your typical children have a good relationship with their sibling with Down syndrome.
  • Your typical children will love their sibling with Down syndrome and will be proud of them. They will think that they are better people because of their sibling with Down syndrome. They will be committed to their sibling with Down syndrome and remain a part of their life through adulthood.
  • Your child with Down syndrome will be happy with his/her life, like who they are, and like the way they look. They will love their parents and their siblings. They will make friends easily. They will have similar hopes and dreams to those of your typical children.
  • Your child with Down syndrome will look more like their parents and siblings than like other children with Down syndrome.
  • Each individual with Down syndrome is unique and has particular strengths and talents.
To see what life is like for individuals with Down syndrome, please check out the following links to websites:
I highlighted the bullet point above because the unawareness that exist world wide about the possibilities that some kids with Down syndrome can achieve educational standards as their typical peers. The key is to find the proper treatments that can facilitate physical, emotional and cognitive growth. Howsoever, there are not proper treatments developed for our kids yet.  

Due to son's coexistent conditions, things are harder than just having Down syndrome alone. But I won't stop fighting for giving him the opportunity to reach his true potential because he is my son first and the labels are second. Nobody can give me a lecture about Down syndrome or Autism because I live it 24/7 all year around. Parents should know that there is more that neuroscience can do for our kids and we need to work together, doctors and parents, for a better outcome and quality of life of all kids with Down syndrome. The work we have ahead of us as parents is enormously, but not impossible. We will keep breaking the paradigms that surround our kids.