Tommy is eating warm food for the first time!

Tommy never before could eat warm food, it was not about like or dislike, his brain was not able to regulate temperatures. His brain registered warm food at a different rate, for him warm food was actually HOT to the point to burn his mouth. So we always had to put his food in the freezer to cool off. After 3 months working on sensory enrichment therapy, he is able to eat warm food. The best of all, I didn't even realize that the activities that we were doing would strength his brain to regulate temperatures.

THE SKY IS THE LIMIT!

Tommy's isolation and withdraw from this world (Part 2)

I explained in my previous post how we are doing to help Tommy to get out of isolation. Basically, we are targeting his anxiety. To reduce his anxiety, I am also analyzing Tommy's behaviors during specific situations where he struggles or shows behaviors that need to be addressed:

• Visiting the playground. While Tommy was completely immerse in his world, the playground didn't make much sense for him. He preferred to be under the structure, far away from the kids and everybody. We were doing Occupational therapy around those times and they recommended the "swings"for Tommy because it would help with his vestibular system and strengthening his cord muscles. The swings were the only area in the playground Tommy could enjoy, so get him out of the swings was a problem because he had meltdowns because of transitioning issues. So when I took him to the park, I put him on the swings almost when we were leaving, because in this way, he could get around the entire playground and get those muscles working. But it still was a problem getting him out of the swing even when I tried that he anticipated what was coming next and he was not getting much around the playground either. Then, I searched for parks around our area that Tommy would enjoyed. I finally found one that he was comfortable exploring and there were just a few people every-time we were there. I began to observe other kids and I realized kids don't use the swing quite often and just for very short period of times. So instead being something good for him, I realized it was the opposite. Why? "swinging" was becoming a self-stimulatory behavior. So we are AVOIDING THE SWINGS at the playground. Now, Tommy is playing non-stop at the playground, running, climbing, laughing, and he is ready to go home, NO MELTDOWNS! The swing is the most sedentary equipment at a playground, I believe they are not the right feed for my child who has low muscle tone and sensory issues that make him to be unresponsive to sensory inputs. I am not an expert, but I am the expert of my son. I do believe when Tommy's former OT used the swing with him, it had its benefit to strength his cord muscles and his vestibular system.  But we didn't suspect that this could become a self-stimulatory behavior. 

Tommy used to play hide and sick. This was one of his favorite games when my sister came to visit us in 2010, but he also lost this play skill to get immerse in his own world.  Friday morning, he suddenly joined Francis and I to play hide and sick while I was doing the dishes. Yesterday morning, I was doing the dishes again, and he saw me and with a glance to my eyes he could anticipate that I would hide behind the sink. So he came to the counter and flowed my lead. This means a lot for a child with Autism because they struggle to understand gestures or non-verbal communication. I have been doing a DIR Floortime approach to get Tommy understands gestures. Watch the video below taken yesterday morning. Tommy is engaging in "people play" with me. It is becoming more and more part of the norm that he is engaging with his environment/people. He is starting to enjoy people; therefore, he is starting to like to be around people.

I will keep going with my action plan because it is showing proven results. I am so please with the Neurodevelopmental Program and MendAbility. They, both combined, are getting quick results that I was not expecting so soon. I am not an expert, but I am the expert of my son and this has brought me to accommodate the right approaches that are helping him to heal.

THE SKY IS THE LIMIT!

Tommy's Swimming Skills

As I promised! Here is a better video of Tommy swimming.

You can see him jumping in the water, and then, doing a weird movement.

We realized during this session that he was trying to do the butterfly swimming style.
He got the body motion, but he was not using his arms. So at the end of the session

his instructor taught him how to do it and he was able to move his arms.

You may wonder, How did he get the idea of the butterfly style?

By watching swimming competitions, he enjoys to see swimming races. 

He is doing better the free style that you can see in in the video.

THE SKY IS THE LIMIT!

Happy World Down Syndrome Day!

March 21 is a great day to celebrate if you know someone who has Trisomy 21 (Down syndrome). I am a proud mom of a child with T21 and Autism who have taught me to be a better person, to enjoy the simple things in life, to smile when things are not so easy and to believe in what others think it maybe impossible to conquer. A child that with his beautiful smile tells me "I LOVE YOU, BELIEVE IN ME AND NOT IN MY DIAGNOSIS. BECAUSE THE SKY IS THE LIMIT!" 

HAPPY WORLD DOWN SYNDROME DAY!

El 21 de marzo es un gran día para celebrar si conoces a alguien con Trisomía 21 (Síndrome de Down). Soy una mamá orgullosa de un niño con T21 y Autismo, quien me ha enseñado a ser una mejor persona, a disfrutar de las cosas simples de la vida, a sonreír cuando las cosas no son tan fáciles y a creer en lo que otros quizás piencen que es imposible de alcanzar. Un niño que con su hermosa sonrisa me dice: "¡TE AMO, CREE EN MÍ Y NO EN MI DIAGNÓSTICO, PORQUE EL CIELO ES EL LÍMITE!"

¡FELIZ DÍA MUNDIAL DEL SÍNDROME DE DOWN!

Tommy's isolation and withdraw from the world

Previously to Tommy'd regressions, he always took some time to warm up while in a crowd or family reunions,  it was still age appropriate at that time. When he isolated from everybody, including my husband and I, I knew that it was something more serious than just Trisomy 21, so I began to rule out all possible causes of his regressions. This is how we got the AUTISM diagnosis.

The picture to the left was taken on December 25, 2010. It was 27 days previous to Tommy gotten  critically ill due to RSV. That Christmas night I wasn't able to celebrate with our relatives because I was in bed rest due to a miscarriage in progress, when I was expecting my second child. So my husband was often texting me to let me know how things were and how Tommy was doing. It was a joy for us, especially in that hard time,  that Tommy was having a good time, spanking aunt Kelly and playing with the daughter of my husbands' cousin.

Sensory overload causes isolation
Many people advised us to have a second child close in age would help in Tommy's development. I laugh about this. I have to say that it's unfortunately not always the case. The way every kid with a genetic disorder develops and face challenges is different. People have good intentions, but there many stressful situations, emotional changes and challenges in the first years of having a child with a genetic disorder that having a second child too close in age just adds more stress into the family dynamic. There is not a parenting magic formula, and it is even worse, when one is encountering the new journey of parenting a child with a genetic disorder where there are more questions than answers.

When we were expecting our second child, something unexpected happened to Tommy. He got critical ill due to RSV. During and after the hospitalization, we noticed regressions and a progressive isolation— It has been reported that some kids have become autistic after suffering from an infection and some of the characteristics are "regressions, isolation and repetitive behaviors." So when his brother was born, Tommy was becoming AUTISTIC. He struggled to be around his baby brother because of jealousy, and the most important fact, because of SENSORY OVERLOAD. Francis represents a sensory overload for Tommy and this is the way many kids with Autism reacts when there are babies around. Francis unconsciously is the one who pulls the trigger for most of Tommy's panic attacks. Sensory overload is the reasons he struggles to be around other kids. But after understanding what Autism means for Tommy, I have been working on an action plan to help Tommy to develop a relationship with me and his little brother because a relationship with his family is the base to open up to other relationships in his life.  To be able to get to Tommy to interact with people we have to get into his world, the only way to do it is by reducing situations that create sensory overloads, which has been advised by Mendability and the Individualized Neurodevelopmental Program.

The benefit of reducing sensory overload

The major benefit of reducing sensory overload is a "full integration of the child with Autism into the world." Sensory overload means an uncontrolled anxiety, so the child look for comfort in repetitive behaviors that help him/her to calm down. Once he or she has gotten into this vicious cycle of repetitive behaviors he/she get isolated from the world because they don't have to deal with the unpleasant world full of sensory over stimulation —no all kids with Autism have sensory issues.

The first step in reducing sensory overload is to identify what makes the child to get so anxious. In my son's case, there are two things that cause sensory overload: Kids and a big crowd of people. There is too much sensory information coming from kids moving, running, touching, crying, yelling, talking, etc. Which is not much different from a big crowd of people. So he cannot filter all the sensory information coming from all these kids and people around.

Once I identified that Francis was causing sensory overload to Tommy, the next step was to reduce sensory overload coming from Francis. This was the first step in getting Tommy able to interact with his little brother. If Tommy can establish a relationship with his brother, this will open the door for future relationships with other kids.

Reducing sensory overload when Francis is around:

• To teach Francis to keep a quiet voice. This is something that he will have to learn anyway. 
• To calm Francis down AS SOON AS POSSIBLE when he frenetically cries (Francis is a DRAMA KING).
• To use the sense of smell when Tommy cannot regulate a sharp noise coming from Francis's screamings (Sensory Enrishment Therapy). I just recently started to use pleasant fragrance on Francis, too.
• To create a regulated noisy environment. It means introducing noises in Tommy's environment, but in a way that it is not frighting while he is having fun and doing a high impact physical activity, such as jumping in the trampoline. 

On March 9, we attend to a relative's baby shower. And Tommy showed interest in a one of the little cousins. It was surprising for me because he doesn't get too close to the babies. But he was so comfortable being around the baby that he kissed him and he spent a good amount of time around the baby—this is a big punch to AUTISM.

Tommy and Francis has recently begun to have interactive "people play." Tommy is becoming an active play partner. He had many age appropriate play skills before his regressions. But Tommy lost all his play skills due to sensory overload.  Play is so important for a child development and AUTISM take this away from our kids.

Reducing sensory overload in the child's environment

• To avoid birthday parties, including avoiding celebrating his birthday until we have his anxiety under control.
• To have family gatherings with a small amount of people.
• To avoid as much a possible a big crowd. If there is an important a family reunion or event that involves a big crowd, accommodations should be done to ensure appropriate sensory stimulation for Tommy. 
• To control his environment by removing unnecessary noises, like the phone ringing often or talking too much on the phone while he is present.
• To control our own behaviors. Keep a calm voice and behavior while around him (Mendability makes a lot of emphasis on keeping a nice tone of voice).

Tommy's Isolation in family reunion has been a big challenge. But Tommy could momentously become part of a family gathering on June 16, 2013. This was the first time without intervention, after his AUTISM diagnosis, that Tommy began to be a little more comfortable in family gathering to celebrate father's day last year. This day I knew that my son could get out of isolation. Since then, we have seen him progressively getting more comfortable by being in a crowd, but still there is a lot to do to completely overcome isolation. I have observed  his behaviors while in the family reunions, even when he interacts better and can tolerate the noise better, he shows signs of over stimulation because he starts to do repetitive behaviors. They pass unnoticed for the most of the people around. But it feels good to see him starting to interact with people!

I am very excited and proud that my action plan is up and running.  People are noticing that things are getting better for Tommy. We are so excited and we will keep fighting for him to reach his full potential regardless the labels. 

THE SKY IS THE LIMIT!

I am seeing the light at the end of the tunnel.

When we got Tommy's Autism diagnosis, I felt that all the doors of hope were shot for him. Autism itself is a big puzzle that the experts have not been able to put it together yet. But because he has Down syndrome, the puzzle gets even harder. But I have gotten armed with courage, as always, and I have decided to fight back against Autism as lionesses defending her cub.

After educating myself about Autism and observing Tommy's development, I realized the best person to be in charge of his intervention was me. In December 2013, I made a drastic change in how we were facing his challenges. I decided to take the lead in my son's intervention by becoming his full time therapist with the support of my husband. I made this decision when I observed him struggling (withdrawing) to work with a new therapist because his current therapist, at that time, moved out to another state. At that moment, I understood that he was needing a well established relationship between him and his therapist to work in his challenges, a trusting relationship that he just has with mommy and daddy. Previous of making my decision, I contacted a staff member of Sensory Enrichment Therapy, MendAbility, who explained to me about how the therapy works and that it is based on neuroscience to balance neurotransmitters in the brain. I knew right away it was the perfect fit for us because I was looking for a therapy I could do from home and we currently were working on balancing neurotransmitters through nutrition. Looking for more information on how to establish a therapy that would suit Tommy's need by me as his therapist , I found out about the Spectacular Bond approach in the December 2013. This is an approach by experts that encourage parents taking the lead in the Autism treatment and intervention. This was  the last piece of information I was needing to go ahead and take the lead in my son's intervention.

I am not an expert, but I am providing all the therapeutic services for my son with the guidance of Linda Kane, a well-known neurodevelopmentalist from ICAN. This program is addressing all the challenges in my son's overall development. While MendAbility, Sensory enrichment therapy, is addressing all his sensory needs by targeting my son's brain. This therapy is done with the guidance of the internationally recognized Neurosciencist, Claudie Gordon-Pomares. This is the same intervention that Jenny McCarthy talks in her book Lauder than words. In two and half months of being in charge of Tommy's intervention, my husband and I are observing things that Tommy used to do coming back. Even when consistency is not always the case in my intervention, we are experiencing a positive change in him, and it feels good. We are doing it as a family and Tommy is progressing faster and he is a lot happier, which is contagious seeing him so happy. Today, I am seeing a light at the end of the tunnel.

His beautiful smile is coming back to

show up in his pictures, rather than

a sad face with a lost look and unawareness.

He is currently working on the free style swimming. 

Enjoy the video of Tommy practicing free style.

I promise a better video next time.

He has learned to float in the water.

You can see it on the video. I will

get a longer and better video next time.

Video of Tommy doing an alphabet puzzle with the iPad.

By the way, he knows all the alphabet, capital and lower case letters.

Video of Tommy working on tracing with the iPad.

THE SKY IS THE LIMIT!