20 Jun Down Syndrome & Autism
When 11-year old Robb was born, we discovered he had Down syndrome and immediately began a series of therapies to ensure that he was as strong as possible to march through life. He was happy, motivated, and took great pleasure in reading and drawing. After he developed autism around the age of 3, his interests shifted somewhat.
Today our son is a firm lover of music, the Wiggles, bluegrass, roller coasters, fast cars, swimming, jumping (on trampolines and off waterfalls) and I’m sure if he had his way would be jumping out of airplanes. He is not a fan of clothes (or taking them off and on), reading, writing, or arithmetic. We as parents and therapists are in high gear concentrating on teaching him the life skills that he needs to be an independent young man. After that, we will take those skills and enhance them to support further more advanced skills that will help him vocationally and socially. The sky diving simply has to wait.
These days, OT, PT, speech,* ABA and other therapies are designed to teach important life skills. Our primary goals right now are teaching self management and communication. These life skills are not only required for any independent daily living, but also preserve one’s dignity.
Robb is an easy going guy. He is also easily distracted and relatively passive, which makes him difficult to motivate. He needs concrete proof that something really good is going to happen before he performs the job you require of him. Otherwise he just doesn’t see the point. For example, he will happily work on dressing—if it means putting on his bathing suit and going into the pool. Or he will certainly practice fine motor skills by working on attaching our dog’s leash—and continue on with physical work to climb the hill up the driveway—if it means getting to the trampoline at the end.
The challenge, therefore, is not only to keep tasks interesting, but to keep them consistent as well. ABA focuses on motivation and creates the repetition Robb needs. It breaks down the big skill like unloading groceries into small steps (first carry the bag to the counter, then pull the items out one by one) and as he manages each step individually it is then built back into the whole task. Therapists prompt Robb to be successful along the learning process to ensure he understands the task isn’t just one step and completes it at an appropriate pace. This prompting is deliberately faded out to promote independence. These days Robb can be found setting the table, sorting his laundry, and helping around the house in a variety of ways while his therapist sits across the room solely to make sure he completes the task.
An important parallel focus for us and Robb is communication. Although he has quite a few signs, they are Robb-centric and the average person outside our home-even someone familiar with sign language-is not going to be able to interpret them. In order to give Robb opportunity to communicate with others and learn to read he is learning to use a computer. He is able to use a touch screen to request food items, select his favorite music videos, and his current work is learning to type. This is being reinforced within the home in the hopes to transfer Robb from communicating with signs and *PECS to touching an iPad which is far more socially acceptable. Who isn’t walking around with an iPad these days?
We are incredibly proud of the progress Robb has made and one day we hope to be there cheering him on as he takes on sky diving too.
-Siri Lise Doub
*ABA Therapy: Applied Behavior Analysis
*PECS: Picture Exchange Communication System