Monday, March 28, 2011

New Awareness

C.S. has made a number of comments over the past few days that mark a significant milestone for him. Yesterday he explained, "I have fragile feelings." When he repeated it again today, I asked if someone else had said this to him.

"No. It's just something I came up with myself."

"That's an interesting way to describe yourself. I think you're right. But why do you think that?"

"Because it's easy to make me cry."

Such self-awareness is really remarkable. This calm statement of fact is a huge departure from "I'm stupid!" which pretty much sums up what has passed for self-reflection over the past few years. It is simply something that has tormented and beaten him.

Of course, we've been working on just such a thing. Not only is saying "I'm stupid" one of the top 3 things he is not allowed to do ever, but we've also been practicing awareness skills in his various therapies. His buddy group facilitator directed up to a few websites that allow us to discuss and practice recognizing feelings, one uses real images and another a computerized face that he can modify himself. Of course he likes the computerized version the best. It is similar to updating his Mii or the clothes on his Webkinz characters and so seems like a fun game to him.

We also practice while watching television. Not just discussing what the characters are feeling but also for example, pointing out that Coach Sue Sylvester did not deal with her disappointment appropriately when she punched the judge after the regional competition winners were announced. It was so cute to hear him discuss her behavior so clinically.

But I'm still amazed that he's begun commenting on people's faces, asking us what we think they feel or telling us what he thinks they may be feeling. He's really applying his new skills.

We are making progress! I know it is happening, but even then, a gain of self-awareness can be a difficult thing to realize or measure.

Silver Lining: On a busy day of errands, while paused in a waiting room, I flipped through People Magazine (a guilty pleasure that makes waiting rooms so worth it) and saw an article on a high school boy born without a leg that had triumphed as a wrestler. I softened up immediately, my heart swelling for his accomplishment. Of course I'm an absolute sucker for such stories. I reflected then, how the world applauded this, in part because his the defeat of his opponent — his disability — was so apparent as, poised on his one leg, the ref raised his arm in an exaggerated pose of triumph. However, despite my son's struggles, despite gaining strength and skill through constant practice, it is highly unlikely my C.S. will ever realize such a photogenic moment. Phrases like "fragile feelings," though charming, aren't nearly as moving as a man running on blades across a finish line or the bulging triceps and pectorals of this one-legged wrestler. But, although it strikes slower, my heart swells even more at the realization of his new milestone. I feel like raising his arm high in the air over his finally defeated opponent. My friends, we have achieved an appropriate expression of self-awareness here!


  1. Bibi,
    my youngest daughter was just recently diagnosed with Asperger's Syndrome which I understand is the same as PPD-NOS. She is now 10 years old. Finding the correct balance for her has been a challenge for our whole family as well. Learning to be more tolerant and forgiving and becoming more aware of her unawareness is eye opening and frustrating as I can now see the 'blinders' on other's eyes as they deal with our special gifts...even some teachers and administrators who are 'trained' in special education. We are about to make some moves for her educational benefit and are for once excited about her academic opportunities. Thanks for sharing!! I'll be back! Take Care..
    Kim Ferguson Silver
    HHS class of '85

  2. This transition from elementary school to middle school will be a big one, and an even more challenging one for a young girl with PDD. I really feel for your frustrations. If you ever, ever, ever need a sympathetic ear, please just call me. But for now, I'm sending all positive thought your way as you make the next move to support her. Way to go!

  3. I have read through all of entries. I felt like I was reading my life all over again. Is there any place where the parents do not have to fight, literally, for their children in need of special services?? While the need for services for the youngest of my 4 is obvious, my sons (high school 16 and 15) because they are in the honors program and making As and Bs in most classes were continuously 'dismissed' as possibly having a learning difference. My husband and I had our eldest independently evaluated because the school didn't find him qualified to be tested through the school system. He was found to have ADD and Learning Disability-NOS (working memory and processing problems related to details and oral processing difficulties). He doesn't need accommodations for all subjects at all times but certain teaching techniques need more support and some tests may require more time. It was very long and frustrating with others that do not know him suggesting he's just lazy, immature, not working hard enough, etc. He was so happy to realize that he learned differently and wasn't just "stupid". He's happily making As in Trig Analysis after almost failing both 9th grade Honors Geometry and 10th grade Honors Algebra II. My second son also has ADD. We didn't have him assessed but have successfully had him incorporate many of the new study techniques acquired for our eldest into his study habits with dramatic grade improvement in his problem areas. Our third child, oldest daughter, is getting along great in a center based gifted program without issues (except as related to teen girls and talking on cell phones!).
    Back to our youngest, we have employed the services of an advocate to call the school to task in fulfilling its obligation. Since we had her assessment completed and found her to score average achievement in 2 categories and superior - very superior in the other categories, it almost makes me ill that I still am arguing with her teacher that her spelling words are too easy and to put her in the highest spelling group. I asked the school system special director directly for an autism expert to come to the school to help. We were sent a liaison who observed our daughter for about 2 hours but said nothing at the meeting. Like I mentioned before, I am excited about her possibilities at this point because of the series of instances from K to her current 4th grade involving incidences of inappropriate discipline, the apparent lack of knowledge/training by special ed staff in dealing with Asperger's behavior and social issues and their seeming unwillingness to consult with an expert, their continued misdiagnosed labelling of 'emotionally disburbed' for my child, special education teacher not diligent in helping keep the curriculm items appropriate for daughter's handwriting ability, not using technology for writing as suggested by the parents and provided by the county, to name a few. We are preparing to press the school system to pay private school tuition for our daughter to attend a specialized academy for high functioning autism spectrum children that go on to college. I'm actually looking forward to IEP update meeting in the next month. It will be really interesting and fun to have someone on our side who knows how get action.
    Positive energy to you and yours also! Big hugs for the Super Moms!

  4. Dear fellow Super Mom,

    I hear you!!! Why is it this way?? I don't know. I really don't.

    Thanks for all the positive energy, because I think it hit its mark. Please see my new post. We had another meeting with the school, and the spirit of this one was remarkably different. They listened. They showed concern and care. And we have a plan in place to support DeDe, watch what's going on and see how we might help her.

    So now, I sending all this hi-energy positive thought to you and all our friends, the other Super Parents out there developing IEP and facing PPTs and more... best of luck to you!


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