By Gabriella True – TACA Co-Coordinator Connecticut
I have twin boys who will be 11 years old this summer and one of them has autism. Although Timmy was diagnosed with autism just prior to his third birthday, he’s been in therapy since the second day of his life. His twin brother, Xander, and the rest of our family haven’t really known a day in which Timmy and the whole family wasn’t affected by autism. Having twins, one with autism and one basically neuro-typical means we really see a stark contrast between the two worlds. This story is not about the one with autism as much as it’s about the one without because autism affects the whole family.
Over the last 11 years, we have learned a lot about autism: it’s co-morbid health issues, how to deal with the school system, traditional therapy, etc. It is not always easy to juggle the differing needs of both boys because we want to make sure that Timmy’s autism doesn’t stop Xander from doing the things he needs and wants to do. In this journey, I think it’s one of the things that together as a family, we have done a pretty good job at. We continually talk with Xander about Timmy’s challenges, setbacks and victories. We do our best to keep an open door to Xander so that he can tell us how hard Timmy’s autism is on him, how unfair it is that we can’t do certain things, how he hears mean comments from strangers, how much he worries about the future after we aren’t here to take care of Timmy, etc. These are all really heavy topics for a kid to be dealing with. But even with these complicated feelings, he is quick to point out the great things Timmy does. We are so lucky he is happy and healthy.
Xander has played such an active role in his brother’s life that much of the advice he gives to my husband and I has proven to be invaluable. As with most families, securing appropriate services through the school district is always a stressful challenge. So this year, as I was pulling together data and progress reports for an upcoming IEP meeting, I decided to ask for help from the expert on Timmy, Xander. I asked him to write down 10 goals he thought the school district should work on with on his brother this year. And of course in 10-year-old fashion, he chose to scrawl them down on little pieces of paper. While pretending that he wasn’t taking it seriously, he wrote down 9 goals and then handed them back to me with pride. I read through them with amazement, as he had completely understood the challenge. So the next day at the IEP meeting I had Xander’s little notes with me. Sometimes I do a family statement. These notes were all the family statement needed this year. The boys go to the same elementary school, so the staff is familiar with Xander and Timmy’s relationship. The teachers and staff have done a great job. They know what Timmy is capable of now and what else is needed to help him be successful in other areas. As we went through the proposed goals, we became aware of how many coincided with Xander’s suggested goals. By the end of the meeting, every single one of Xander’s goals was included in some shape or form into the IEP documents.
During dinner that night, we talked about the IEP meeting and how Xander was pretty accurate in knowing Timmy’s needs. I asked him if he would write down his thoughts about these goals and his relationship with Timmy. He said: “Well I am his twin so why wouldn’t I know everything about him? I’ve known him since before we were born. I look at my life and my friends and easily see what Timmy can and can’t do like us. It’s obvious what he needs help on. Like who wouldn’t get that he needs help being a neater eater? Or that he has to learn how to be safe and not run away from his aide? Mom, what would you have done if the school said no to these things? You would have to get the lady who helps you with those meetings to come back to the meetings, right? (Meaning our advocate) Well, I’m glad they know what he needs but I’ll check in at the school and make sure they are doing it right. The other boys always tell me what he is doing in his classroom. We are at Timmy’s spies.”
Autism is hard and it makes everyday a challenge. But having an open dialogue with the family about how it affects not only the child with autism but the whole family is key. Through TACA, I have had the honor of meeting so many families and siblings. I cannot sing enough praises of these siblings. Of course, they do not need an Autism Awareness month for themselves because they live and teach it every single day. They are some of the greatest autism advocates we could ever imagine and hope for. They teach the world about understanding differences and how autism is really hard. They teach the world how to celebrate victories and to celebrate the person with Autism. They are real Autism Super Heroes.