Frankcarlo

Patrick

Families in the Spotlight
(Claudia and Her Son Nicholas)

Nicholas is six years old, having just celebrated his sixth birthday in July. He is a little boy, like most every other child his age, learning the ways of the world and trying to find his place in it. But his story has more to it, much more.

He was first diagnosed when it seemed like there was no other way to deny it. It was probably when he was close to being two years old - about twenty months. He was the first baby, in the beginning of a marriage, so they had nothing to compare to his behavior. Nicholas is now the product of a family who has worked hard for a very rewarding result, a true relationship with their son. Claudia tells her story without hesitation; she is eloquent and passionate in a way only a true believer can. She is the RDI's biggest fan.

It all started when Nicholas would not pay attention. This seemed unusual to a mother with a background in early childhood education as did his ability to amuse himself. Claudia recounts, “He would walk around and when I called his name sometimes he turned toward me sometimes he didn't. It was like he was deaf. Other times I would call and he turned around right away. It was very inconsistent. I thought there was something wrong with his ears or hearing. So, we went to check his ears with a specialist, but it came out fine. That doctor recommended we see a neurologist. Right then I knew there was something wrong – it was a feeling. My pediatrician didn't think it was necessary for us to pursue this, he thought Nicholas was just a late talker and advised us to wait a few more months. We didn't listen to him. Nicholas wasn't talking (although that really didn't concern me that much), he wasn't attentive and he seemed to entertain himself in very odd ways. I needed to do something.”

When did they discover that Nicholas had autism? As an educator with a background in child development, Claudia could only live in denial so long. Even now, she can recount exactly what she was looking at - the symptoms that were there all along. “ Nicholas had weird routines, for example, he would put his sippy cup by the window and stand back, stare at it and laugh. He did this over and over, and when he was disrupted from his routines, he would get frustrated and he would cry. There were times that the frustration was so bad, he would slowly bang his head on the wall or hit it with his hand. He would stare at ceiling fans and laugh. He wasn't aware of people or things around him. He was always affectionate towards my husband Brad and me, thank God!”

“After the hearing check up and we were sent to a neurologist, I had a strong feeling that it was Autism. I was afraid my feelings would be confirmed and they were. He diagnosed Nicholas with PDD [Pervasive Developmental Disorder], but back then I didn't know what that meant. He explained to my husband and I that this was neurological condition that needed to be treated with therapy.

After the neurologist diagnosed Nicholas with PDD, Claudia was extremely proactive. She knew that the sooner she did something the better. “I am so glad that I went to this neurologist because he mentioned Dr. Sheely and the ConnectionsCenter. That is how RDI became our one and only intervention. I look back and think how lucky we were to find RDI on our first try. When the neurologist discussed our choices, he explained that it was a long-term therapy thing. He told us about a patient that had gone to Dr. Sheely, and gave us the phone number. Since my first conversation with Dr. Sheely, three years, ago, I knew I had found the right place and with her unique way of making a connection I felt understood and most importantly I felt that Nicholas could be helped.”

As soon as they found out about RDI, things seemed to fall into place. It appears that Houston was meant for them. “We lived in Laredo , TX and commuted to Houston every two months for the first year, which was the most intensive year. We would come for a consultation at the ConnectionsCenter and I would have a session with Dr. Sheely and Nicholas. I would write everything that she said down and then go back home and do it myself with Nicholas. A year after, my husband was transferred with his job to Katy, a suburb of Houston so that worked out.

Protocol has changed at the ConnectionsCenter since Claudia and Nicholas first started coming- updating the communication system through the use of video tape has benefited patients like Nicholas tremendously. “Right now it is nice that you can tape things and send it in. This is wonderful for the families that live far away. But before this, I basically drove the five or six hours to Houston and tried to understand as much as I could, since there weren't any RDI books back then. If I had any questions, I would email Dr. Sheely directly and she was great about answering them. During, the first 6 months things were very intense for me. I decided to stop working and concentrate my full time on Nicholas. Fortunately, my other baby was young so she slept most of the time, which allowed me to dedicate most of my time to working with Nicholas. It was tough, but I don't regret a day I spent on it. It was like a huge jumpstart. I didn't fully understand RDI's theory, but I was seeing impressive results with Nicholas, so I was very motivated to continue.”

From there, things began to change. Nicholas's habits evaporated and Claudia was immensely impressed. “During the first two months, weird behaviors and routines began to fade away. Nicholas was more aware of his surroundings and other people. Even though he didn't speak right away, there were huge differences in the first six months of doing RDI Program. Who is going to want to stop if you are seeing drastic results?! He stopped running away and we didn't have to follow him everywhere. When he started talking, his language was interactive. He started to get interested in playing with his sister, who is 11 months younger. When possible, I tried to take advantage of my daughter's natural instinct to play with Nicholas and include her in our games. Without her knowing, she became a key part in our games, especially when Nicholas began a dyad in his formal lab time at the ConnectionsCenter. At home I would try to follow the framework using my daughter as Nicholas' partner. It was then, that I understood what Dr. Sheely had told me in our first meeting - about the advantages of having siblings close in age. Nicholas and his little sister have developed a nice relationship, which is extremely rewarding for me. They play and teach each other things. In the beginning, I had to coach more intensively because there were more breakdowns in their play, but now I can fade away for longer periods of time and let them make their own decisions.”

Even with all of the success, Claudia realizes what is at stake with her child. She understands that she will have to keep working with him. “With Nicholas' progress, we have good days and bad days like everything in life. Some obstacles fade away and new ones come up. Nowadays, working with Nicholas isn't as intensive as it was as the beginning, but in many ways RDI has become a way of life for our family, a fun way of living. We try to incorporate RDI principles in our everyday routine; at dinner time, when we go to the store, when we watch TV, when we ride in the car. I try to expand the kids' everyday play with an RDI objective in mind. Like, when they've been playing pretend, I might suggest doing it backwards, or to taking turns, making it silly, etc. It amazes me how far Nicholas has come. Not just participating within the family, but actually interacting with other children like with the neighbor or his cousins. People that don't know Nicholas don't believe he is autistic, because he adapts and goes with the flow in most of situations like at birthday parties or public places. When his motivation of doing something shows in different settings, with different people, I know the function has generalized. For example, his progress is always first in his sessions (lab time), then at home (especially with his sister), and last with peers at school. I am so pleased to see Nicholas preference to play with his sister after school, instead of a solo game. Our recent big step is that he began to play and initiate interaction with children at school during unstructured times. Because of the new environment and the larger class, we are so excited with his adaptation to a regular elementary school. His teachers report he is functioning and going with the flow like any other kindergartner and I know RDI played a big role in this. As far as RDI levels, he continues to work on a level II, stages 6 and 7 in his dyad, and level III beginning of IV in his individual progress.

In the end, Claudia is overcome with emotion for what RDI Program has helped her accomplish. She admits freely that she usually cries when she talks about her family's life before and after RDI. Her child with autism is functioning and enjoying a world where there are possibilities for him. Her proof lies in the knowledge that his quality of life will be sufficient and that one day he will be able to have a fulfilling life. “I know we still have a long way to go, but I feel fortunate to have found an intervention that will give my child the opportunity to have the same quality of life like other children. I am truly an RDI believer, and I am sincerely thankful to Dr. Sheely and Dr. Gutstein for all their guidance and kindness that my family has received from them.”

Frankcarlo

Patrick