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2003 Ben Before Autism Hit
Ben's journey started when he was 1 years old and he was not pulling to a stand in his crib like his triplet brother and sister. Today Ben is a beautiful young adult, still developing and making progress with the continual love and effort of many. The road hasn't always been easy, but looking back, it's been so worth it!
Unlike today, in 2004 Autism was a sea of confusion in a "wait and see" world. Professionals were figuring it out and there was a big gap as the medical community came to consensus on protocols. I spent so many hours waiting for appointments, assessments, and call backs. Unfortunately that part hasn't changed much.
2020 Ben 18 Years Old
Having to wait was the most stressful and given the importance of Early Intervention, I searched every where and turned over stone after stone. Finally we found a Loyola grad student (Rebecca DiCocco, now Gagliardi) who was in the final semesters of a speech language degree and willing to work with Ben one hour a week in our home. At the time, Ben also had Infants and Toddlers, but this was far below the prescribed 30+ hours of intervention per week. I searched every where!
It was during this time Becky and I worked on creating The ABC Letter Book to create a simple book we could use to support Ben learning verbal language. Ben did not have fine motor so was limited with sign language. Having triplets mean't pictures from PECs were constantly missing. Our only hope was to shape up verbal language. In the end, Ben learned to communicate using all three modalities!
The ABC Letter Book was not only engaging for Ben, but anyone who came by. Everyone loved looking at the personal pictures and talking to Ben about his life.
It was only at age 17 did Ben start unwrapping his own gifts. Took a while, but he has learned there are goodies inside!
Ben was not a big fan of horses which was a bummer given the science behind horseback riding helping kids improve their gait.
We also lucked out on getting accepted to a Kennedy Kreiger Institute Research Study at CARD (Center for Autism and Related Disorders). This was a 6 month trial and every day we drove across town to attend the classroom.
Ben actually helped shovel, but like the other two, it was a constant effort to redirect!
As the years have passed, we have taken Ben along everywhere and kept having him try new things. As a mom, I have not allowed him to skate on something because he has a disability. All three kids were treated equal. With that being said, often we would have to leave a function early, or do something differently because Ben would persist. He still would need to finish what was started and then if he chose not, we wouldn't do it again.
At bike camp (https://icanshine.org/) Ben was eventually able to ride independently for about 30 seconds. This is an all volunteer event and the most wonderful people you will ever meet. I would also notice pops of mental clarity from Ben as he exercised a lot during the sessions.
Ben at the Renaissance Festival. Favorite pick was the wood slide.
Ben has been through two dental procedures that have required full anestesia. The first was because the enamel on his teeth did not form right so he had to have fillings to support keeping his baby teeth long enough. The second time he needed a cleaning and teeth pulled. We use an electric tooth brush most of the time and Ben is almost independent. He actually takes care of his teeth better than the other two!! LOL
Check out Ben's last dentist visit here:
Today... well who knows what is coming down the road. We are starting transition with SSI and figuring out Supported Decision Making options. Luckily Ben's pediatrician has agreed to keep him as an adult patient. Though COVID has been a challenge, Ben has done well with the routine and we've taken the time to teach him to do more in the kitchen and fold laundry. No matter, his goal is to giveback and in the years to come he will learn that and hopefully find a productive skill.
Every day our kids do more than we can imagine. Their worlds are upside down and backwards, yet they try to show up and give it their best. It's been almost 18 years since diagnosis. Who knew the path.
