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!