BEN'S OPTIZ SYNDROME

Ben has an Individualized Education Plan for many learning challenges.

Ben has Opitz G/BBB syndrome with agenesis of the corpus callosum, mild to moderate mental retardation with a developmental level around 3 years. He has hypotonia with scoliosis, a very weak grip, and he does very little with his hands. Although he can use the toilet when taken, he doesn't ask to go, or "Hold it" until taken, and is not yet toilet trained. He does know his way around school, but doesn't follow more than a two part direction very well.

Although he has good visual acuity, he doesn't use vision to look at anything he is not interested in, and has only a little depth perception. In many ways he acts like a blind child. He doesn't see in the wedge in front of him to the table. He has no sense of danger and could easily walk into a street, or in front of a fast moving swing.

He has just recently learned to drink milk and juices, and to self feed, but he can't prepare food on his tray, cut up meat, bite off of a sandwich, open milk, pour milk, or judge if food is too hot to eat. He just won't (or can't?) look at things at table level. Things just fall off his spoon into his lap, for some reason!

He does have a good memory and has good musical abilities (although as his voice is changing, he doesn't seem to have a feel for how to use these new tones!). He can learn only a little through whole group instruction, loves to listen to stories, but mostly needs one-on-one instruction. He is good on the computer, which is at eye level, and can use a mouse with the best of them - no grip problem here!

Ben has had a truly spectacular team who have made a personalized type of supported "inclusion" program work nicely for him. Ben is a part of the whole small mountain community, not just the school. Everyone knows him, even people we don't know. The community is very supportive of him. He is the community's only child with such extensive challenges, and they have supplied him with tuition for Adam's Camp, paid for horseback riding therapy and skiing, bought computer equipment, and a therapeutic tricycle. When we take him to the grocery, drug store, library, park, or post office, people call him by name and talk to him!

In school, Ben is "included" in that he is in a regular class of typical children. Since he is the only one up here for whom a special classroom might be an option, there just isn't any other setup already in place. We have pretty much requested what we, and his specialists, have felt he needed and the school system has provided him with a model program. He has had a full-time, one-on-one paraprofessional, and we have been able to help select whom we want for that position. Usually these paraprofessionals are teachers who don't have their Colorado license yet. He gets one hour of PT, OT and Speech every week, as well as a 20 minute special music time each day. He has his service dog, Bates, with him at school - he's written into his I.E.P. Ben gets 40 minutes special ed teacher time each day - just him, who also juggles all the scheduling and paper work. Each and every one of his other teachers has facilitated a loving environment for him with the other children. The families are supportive. The other kids invite him to their birthday parties.

But Ben's program is not a true inclusion program. He has time out of the classroom for his special music class, toileting (4 times per day), OT work, individualized math and reading instruction, brushing - things we feel are better done by himself - either for privacy or for distractions. He does (with help and adaptation) write in his journal when the others are writing and on the same topic; say the pledge, sing a patriotic song and memorize the same monthly poem; go to recess, music, art, p.e. and computer, and eat lunch with all the kids - even in the noisy gymnasium! When the others are practicing spelling words, he practices his in the classroom, and takes his spelling tests aloud (then scribbles them on a dry erase board.) He gets science and social studies, adapted, with the others.





Ben "spins" a plate during the spring program. He had to lift his arms up high. He was so proud of himself! He also called the Bunny Hop for the Third Grade!
Ben and good friend, Jennifer, keep score together when their P.E. class went bowling. His classmates are really helpful. Our supportive community provides lots of fun local field trips for our students.


His school has many special events, and when guests come he is right there in the audience with all the other kids. He has had speaking parts in the programs and received cheers from his very large fan club! He is in Mountain Melody Makers, which is the school's choir. He goes on all the field trips, bowling, skating, etc.


It has worked great and we felt like he was learning in that environment.


Ben has been blessed with a wonderful school program!


Thank You to everyone who has had a part in helping our Ben have such a great school experience!