Sav in her made up super hero garb. Creative.
age 5
Sean with a bunch of beanie babies and Jackie.
age 4
Friday, July 15, 2011
Missing Mortar
Like two live wires that touch,
there is a spark in your eyes
that ignites satisfaction
while you build your bridge
that takes you to your other world.
May I follow?
Take me, hollow,
fill me with understanding
as we reach the other side.
I know an answer is hidden
where the mortar belongs --
I would know it
of our connection was concrete.
copyright 1998, Peggy Putnam Owen
26. Building Bridges
Summer was hard but fun! Autism automatically qualified Sean for ESY (Extended School Year) so he went to school a little during the summer. The hours were shorter but at least he was going some. Since there is a little bit of natural regression with typical children during summer months it is apparently more with autistic children so the idea behind ESY is to close that gap. ESY is not just for autistic children, however. Whatever the reason, I was clapping my hands! I loved every break I could get because I had not quite gotten a handle on how to communicate with Sean effectively.
Savannah had graduated from preschool (or so I heard) and although her teacher recommend that we "hold her back", I just couldn't see that happening. I was ready for her to have a full day of school. Sister, please! Once my husband and I went to the year end play, to see Savannah perform (and save face, as if), I wanted to never see those people again. It wasn't anything they did, it was just that the year had been so hard and embarrassing. She was going to go to Kindergarten at the same school as Sean.
During the summer we played hard! We went swimming at the apartments. Even Jackie went swimming with Sean. I'd bring him in, put him on spin cycle and dry him out. That was the first real time I solidly stood my ground with Sean. I would try to explain, "If you take him swimming, you will have to wait until he's dry!" I was learning to be one Big Enchilada! Sister, please!
We hung out at Pat's and went swimming, made the occasional trip to Mexico with Pat (cause Mama was out of Sol) and sometimes made a trip to the beach with Pat, her son Ian and Alyson. My husband was working hard but enjoyed the weekends with me and the kids. When we were at the island, he was glad to have some down time at home alone.
Autism seemed like Sean's imaginary friend. I'd watch him withdraw and cross over as if crossing a bridge. A "mental" bridge. Even though I know he didn't ask for autism, from the outside looking in, it seemed like he couldn't wait to cross it and stay away for awhile. He was comfortable there. The more we tried to pull him out of himself, the harder he worked to protect it.
25. My Sweet Collector
As hard as it was to figure out how Sean's mind worked, I was fascinated by the autistic behavior. I often watched him work. He was a very busy little boy. He was happiest when he stimmed. He'd squat, knees spread wide with his bottom nearly touching the ground and gather sand or freshly mown grass in a fast scooping motion, over and over again to collect more with each grip. He held it up, released it a little at a time and stared past it as it trickled. It was hypnotic.
He loved Q-Tips, sticks and straws.
Sean in Harlingen at age three.
24. Signs and Symbols
I was not a direct victim of autism but I felt very victimized by having to live in it's periphery. It was hard enough for me living alongside these symptoms (in varying degrees) much less for Sean having to live with these symptoms:
- Lack of or delay in spoken language
- Repetitive use of language and/or/motor mannerisms (hand-flapping, twirling objects)
- Little or no eye contact
- Lack of interest in peer relationships
- Lack of spontaneous or make-believe play
- Persistent fixation on parts of objects
- Difficulty with transitioning
I watched the frustration build in Sean with very little skills to help him. He couldn't speak. He didn't have a definitive way to communicate so all that was left to do was throw down. Sylvia introduced new ways for Sean to communicate. He began signing a little but it wasn't used very often because they were trying to get him to speak. They used Board Maker picture symbols to make picture schedules to help with transitioning. The schedule is designed to show him what is coming next much like the one below:
FINISHED POCKET
As each activity was carried out, Sean would remove the velcro'd symbol and put it in the "Finished" pocket. Then he would move the next symbol to the top. The schedule could be as detailed as it needed to be. I was amazed at how this worked. He was a long way from being liberated but at least he knew where he was going one schedule at a time. With the sign language and symbols, the days at school were more calm. I'm not sure why we didn't use the picture schedule system at home. It sure would have helped.
Sean was happier. He had new skills to help him communicate. He still stimmed quite a bit by trickling linear things like Q-tips in front of his face and watching them fall. His dad would throw them up through the ceiling fan. As they scattered, Sean (in a crouched position) immediately collected them in a matter of seconds. I remember the day I introduced him to Q-tips. I was so frustrated I opened up the box I had just purchased and threw a wad of them on the floor. He was satisfied. Stimming was something the school wanted Sean to do very little so they used it as a reward. At home, my motto was:
"Do it, do it, do it till you're satisfied, whatever it is!"
23. Like Father Like Son
With Sean starting school at the tail end of the school year in mid April of 1998, we were rushed with information about autism, parent rights, IEP's (Individual Education Plan), inclusion, ESY (Extended School Year) and deadlines. We had in-home training too. Sean's new teacher, Silvia, came to our home to explain details about autism, terms related to autism and what is to be expected. As my husband and I were listening to the crash course in autism, I remember he asked questions about genetics. As he read the signs from the list, I believe they felt hauntingly familiar to him. He laughingly said, something like, "I think I have this!" And I laughingly said, something like, "I think you do!"
That was pretty much the extent of our conversation regarding his having mild autism. However, his statement had me thinking about our life since we were married in 1986. Although there is no official diagnosis that I am aware of, based on my experience with autism and knowledge today, I believe his statement to be true. I began to feel boxed in by autism. Why did this happen to me?
Subscribe to:
Posts (Atom)