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catching on things March 31, 2011

Posted by caizooka in tbi.
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All of J’s friends wear their J wristbands. His friends at his school decided upon the saying. It says ‘We Believe’ and on the flip side it says ‘In Julian’.

Since it is made of rubber, it can catch. I was typing away this morning and then moved my hand. It caught. I took it off, mindlessly, and put it next to the computer and found myself staring at it. My heart skipped a beat, I held my breath. I realized how much I loved the fact that it caught on the desk and how I had to stop what I was doing to consider some of blessings that have been bestowed upon us in these past months.

I wear mine all the time. It is a constant physical reminder of the love of a community for one of their members; of how strongly this love can change a person and everyone in their periphery. In this phase of J’s recovery, this feeling of enduring compassion, inspiration, and friendship for a buddy and his family has been a life changing experience for many of us. So, yes, I love the fact that my wristband catches on my desk when I’m typing. The inherent kindness and generosity of everyone in our community is contagious. You might catch a case of it if you are careful!

pushing people, people pushing March 5, 2011

Posted by caizooka in autism, autism parenting, tbi.
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I have realized that I spend most of my time trying to convince people to do something that they firmly don’t want to do. Autistic people want to adhere to what is familiar and have extreme tendency to be intolerant of anything outside of their usual focus. We spend a great deal of energy trying to push O outside of his comfort zone. If it were up to O he would eat the same cereal every single day. We would get some seriously epic meltdowns when that one cereal ran out. So, we make him try different cereals. We get a lot of resistance. A lot. Yet, we push and push. Get a lot of screaming and yelling and resistance. Sometimes I wonder why because it would be easier for everyone if we just made extra sure to have that one cereal on hand. Yes, easier now, but in the long run, no. What if General Mills stopped making Gluten-Free Honey Nut Rice Chex? So, to add some variety, Peter bought Gluten-Free Cinnamon Rice Chex this last time. When I saw him take the box out of the grocery bag, my body tensed. I felt the anxiety of having to absorb the meltdown that would surely ensue the next morning at breakfast time. Surprisingly, it didn’t. There was a moment of hesitance, as if  O was saying to himself, ‘Hmmm…this is different…how am I going to react?’, but then he tried it and liked it. THIS is why we push. 6 months ago that morning would have looked vastly different. He wouldn’t have been able to switch gears. It would have escalated into a physical, mental, and emotional break down for O. For us, it would take the wind out of our sail for the rest of the day.

Dealing with a TBI of a 14 year old boy is no different. Constantly trying to sugar coat everything to get J to do things that he doesn’t want to do. More pushing. More resistance. I understand that laying on the sofa, watching NCIS all day is easier. Easier for him. Easier for me. Yes, there was a time for that, where I let him do that. I just was so happy that he is here with us, that I didn’t want him to do anything that he didn’t want to do. I certainly didn’t want to inflict any pain upon him. Now that time is over and it’s a new phase. The pushing phase is underway. It is not fun, but hopefully as he realizes that he CAN do things, we will get less resistance and have to push less.

Of course, then there is always our almost-3-year-old E, who just watches these situations unfold before him. Observing and absorbing…and calculating. He is as sweet as sweet can be, but he is extremely smart and keenly aware of when his parents are worn down from all of the pushing. He knows our weaknesses and vulnerabilities. He plays them. And he does it well. It’s quite a skill. He can be quite a tyrant at times. Again, because it is easier now, we have let it happen. But, I’m onto him. He pushes back in a way that is different from the others because it is pre-meditated! Yes, he has the potential to be a pre-meditated manipulator. But, he has empathy. A huge heart that is oozing empathy. It is our job as his parents to hone this and realize that he has potential to be very smart and can anticipate situations. Yes, turning the negative into a positive. A necessary skill of a parent.

When I originally wrote this post, I was worn down. I didn’t have hope. Today, as I rewrite it, I recognize what I wrote before and hope that when I’m faced with these emotions next time, that I will find it in me to push myself in a more positive direction. Yes, more pushing. Perhaps even shoving. But, it will be better in the end as I will have achieved something different than I usually would. There is that word again, ‘usual’. To me, ‘usual’ means boring, familiar, assumed. It is a beautiful thing to not be usual, but to know when it is necessary. Sometimes familiar is good, but boring and assumed is not. Therein lies the continued desire to push. To forge ahead. To challenge myself to be a better person. A better parent. To raise people who have a desire to challenge themselves to be better people.

As a reminder, I will include what I wrote. (Warning: it is negative)

It’s an unbearable cycle for a parent to participate in. I want out of this cycle. I cannot partake any longer. To spend all of my energy trying to better the lives of the people but to receive nothing but resistance, screaming, yelling, hitting, kicking, complaining, scoffing, stomping, and utter rudeness…it’s too much for a soul to bear. I throw up my white flag.