Norman and our Family
by Myrna Medina

Our Family

We are a family of four, my husband Juan, who is a wonderful dad and husband, my daughter Deloris, who is a great big sister to Norman (she reads to him, does math, sings and plays with him) and myself, Myrna. I try to do the best for my entire family. As a family we enjoy traveling together, swimming and having company at home.

The Early Years

My son Norman is a 6-year old boy who was born at seven month and three weeks gestation. When Norman was released from the hospital and brought home, we thought we were bringing home a normal baby. However, when I noticed that Norman was not developing typically, I started to get worried and visited different doctors. After many visits, Norman finally was diagnosed with blindness as a result of undeveloped retina. A month after he started receiving vision services, we noticed that Norman was not responding to sounds and sure enough he was also diagnosed as deaf. Following this diagnosis, it was later determined that he has both hypo and hypertonia. For the first two years of his life we went from doctor to doctor, and Norman underwent many surgeries and various therapies. As time went by, it was as if another Norman was born. Instead of having a "normal" boy, we had a child with special needs and challenges, and we grew to accept him the way he was. As a family, we have cried with him and for him, laughed with him, struggled with him and the most important, learned with him.

Norman at Six

Norman is now a six-year old boy with strengths and weaknesses. Norman has the ability to use his fingertips to recognize different objects. He uses his hands and feet to explore his environment; he also has a good sense of smell and taste. Norman uses his facial expressions, gestures, and even sounds and giggles to express himself. In some ways, it's easy to understand Norman's needs. When Norman is interested in something or if he is uncomfortable, somehow he lets us know. We know he enjoys taking a bath or going for a swim. Norman has a great personality, a sense of humor and a wonderful smile that helps him a lot.

Teaming with the Educational Team

The most important things for the educational team to do are: to accept my child the way he is with his strengths and weaknesses, to show interest in him, to challenge him educationally, to be open and willing to learn and try new strategies, to make adaptations, and to think in a positive manner. I would like the educational team to work like a real "team." Communication between home and school is very important. Issues that come up really need to be shared with all members of the team especially the family. The school team must realize that I am the mother and I know my child more than they do and that I want the best for my child. I am also a part of the team and I want to cooperate. Basically, I want the team to see Norman and other children like Norman not as "disabilities" or problems but as wonderful children for them to get to know and support!

Challenges

One challenge that we have experienced as a team was deciding what objects or adaptations to use for a particular activity. Another challenge was ensuring that the entire team and everyone at home needed to use the same objects and signs for the various situations that happened at home and at school (e.g., eating, playing and going to the bathroom). Another challenge is the need to remain optimistic even if we do not see any progress. It is necessary for us as a team, to remember and understand that it is important to insist on using certain strategies consistently, and to not feel discouraged or to give up easily.

Communication Strategies

Norman has been using an object communication system. This communication system was designed using five different objects that represent different situations in his daily schedule at home and school. We use a piece of seatbelt to represent going on the bus or in the car, spoon for snack and lunch, a cup for drink, a piece of diaper for going to the bathroom, and a small ball for play time or recess. As a team we decided to pair the object with the sign and the spoken word. This takes time but, Norman has picked up the meaning of these objects and some signs like, ALL DONE eating, and DRINK or THIRSTY. Even though we are using the object communication system, we have introduced some other communication strategies as well. For example, we help Norman touch the door frame to indicate entering or leaving a room, or touch the chair to help him anticipate sitting down, or to touch the water prior to taking a shower. Even though, I try to do this as routinely as possible, I sometimes forget. That's when my husband, daughter and even Norman remind me that I have to do these cues.

Sometimes it is difficult to ask Norman to touch or feel objects or textures. Often he rejects this and takes away his hands. Instead of manipulating his hands, we gently touch objects on his hands or any part of his body. He immediately will reach for the object and take it off his body. Norman prefers to explore at his own pace. Sometimes he even explores too much! For example, when being fed he sticks both hands in the bowl of food. He enjoys getting all messy! At this time I am happy with the results I've noticed through the use of these strategies. I know that our communication will improve as long as we use them!