tag:blogger.com,1999:blog-55871192676161279082024-03-13T17:55:51.872-07:00Aspie WiseCannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.comBlogger80125tag:blogger.com,1999:blog-5587119267616127908.post-66316074065157082232012-09-08T13:26:00.001-07:002012-09-08T13:26:39.876-07:00Uncertain FutureNo matter how faithful one is, no matter how well things are going, our future is uncertain. It just is. Certainty can only be found in this moment right now. Even our past can be somewhat uncertain if our memory is minutely or largely lost or distorted. I guess one could argue that even the present is only somewhat certain because how we interpret this moment is filtered by our focus, our biases (good and bad), our senses. I have searched hard for certainty in many facets of my life: love, fertility, children, autism, and now in my health. I search for certainty within myself. I search for certainty from others. I search for it online, in the eyes of doctors, in my dreams. What I keep finding is that certainty doesn't exist and that it is folly to strive for that which is unattainable.<div>
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For me, I think my search has been largely driven by an inherent insecurity, a grappling for something to help me be grounded, to feel strong. For me, finding a "fact" about something that I am experiencing validates not only my experience but me as well. I feel certain that I am right. I feel certain that I'm on the right path. I feel certain that I am capable of handling this life, this situation. Not only am I seeking certainty, my children now are seeking certainty about the big questions such as, "What happens when we die?" "How do I know this is the real me and not the dream me?" and "When I die, how will Santa bring us presents?" Ok, so maybe not all the questions are big ones but they are certainly big ones for my 5 year olds.</div>
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When I don't feel certain about things, I feel anxious. I feel ungrounded and vulnerable. I don't enjoy feeling like that so I'm compelled to seek the certainty that I feel I am lacking. Over the last few years, though, I have feverishly sought certainty about infertility, about autism, and now about my diagnosis of Ehlers Danlos Syndrome, and I'm realizing that yet again I am facing unanswerable questions and that this endless pursuit of certainty is exhausting me. I can't continue with this unrelenting pace and I must find a way to balance a search for answers while simultaneously accepting the unknown which is before me. </div>
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For those with children who have autism, you know what kinds of questions that cross your mind. What can I do for my child to help them live happy, productive lives? What services do they need? Will they ever talk? Will they fall in love? Will they be ok when I'm gone? Then there are those nasty questions that needle at some of us like, "What did I do for this to happen to my child?" "How can I be a better parent to my child?" "What am I doing wrong?"</div>
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For those who have been diagnosed with a chronic condition such as mine, "What is this disorder going to do to me?" "How bad is it going to get?" "What do I need to do to make this as good as it can be?" "Do my children have this as well?" Then, the nasty, mean side of ourselves which asks, "Is this real?" "Is this pain just normal and I'm making too much of it?" "Do I just need to 'suck it up'?" "Am I seeking attention somehow?" "Was my doctor wrong?"</div>
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Yesterday, I felt quite sad about my new situation. I have concerns. I continue to experience new symptoms of Ehlers Danlos that are disconcerting. I don't like it one bit. I know I have a choice though. My life is a gift and I need to value it exactly as it is. I don't need others to agree with me to validate my own experience. I don't need an expert to tell me what I already know. What I need is to listen to myself, to trust my instincts and to have faith in what I'm experiencing now and to find peace even in the darkest moments. I also need to be brave enough to love autism even at its worst because it is a part of my children and my children deserve to be loved in their entirety. I need to love all of myself even the parts that are unstable (literally and figuratively!), the parts that hurt and those that limit what I can do. Just like my children, I deserve to be loved entirely and who better to love me than myself? Of course, I can't help but have flash backs of the SNL skit with the line, "I'm good enough. I'm smart enough and doggone it, people like me." It's cheesy to say but profound when you really can feel that way. </div>
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So, for those of you who can relate to this post, I hope this gives you at least a moment of peace. If you have any particular things that help you feel comfortable with uncertainty, please share. I believe we all have something to teach one another. Thanks for reading.</div>
Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-53543499174239573082012-08-24T14:16:00.001-07:002012-08-24T14:16:50.820-07:00The Power of ValidationYesterday, my oldest (N) and I found ourselves in one of our classic quandaries. N is a huge fan of Minecraft which is a computer game involving world building that can be played in the creative mode (where you don't have to worry about getting killed) or survival mode. (For those familiar with Minecraft, I apologize for my very simplistic description of a very detailed, multi-faceted game.) Lately, we've been playing in multiplayer mode. I say "we" because I too have taken the plunge in order to understand my son and to have a great way to connect with him. His younger brothers (who are 5) are playing with him as well.<br />
Needless to say for those who are familiar with Aspergers (or autism in general), none of us play it adequately for N. (I'm actually using our time on Minecraft as a way to work on his flexibility and social skills since he's more likely to learn these skills while doing something he loves.) <br />
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The quandary that I alluded to earlier began when N was playing my youngest twin (D). N was playing a new 'mod' that was intended to be played in survival mode and had several, specific challenges to complete. D wasn't interested in playing in survival mode because he can't play well enough not to die. Since both boys are on the spectrum, their rigidity tends to lead to explosive episodes of aggression when they disagree. Of course, this no doubt happens with typical children. With spectrum children, though, the disagreements that lead to aggression can be about seemingly benign, trivial issues, and, even on those conflicts which are understandable, once they have set their minds a certain way, there is no clear way to reason with them. The subsequent aggression is often way out of proportion to the importance of the issue (from an NT's perspective). <br />
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Inevitably, N changed D to survival mode remotely and then killed his brother's Minecraft character. This, of course, led to aggression and resulted in N going downstairs to cool off. N was beginning to escalate to a meltdown and so I went downstairs to help. In situations like this, N is overcome with emotion to the point that he simply is out of control. I often have to be careful approaching him during this time because he has hit me during these fits. From a few feet away, I suggested he take some deep breaths and then I calmly tried to describe the situation - that he wanted survival mode but D did not and that it was OK if they played in different modes. End of discussion, right? Of course, that didn't work! It was worth a try but then I had to pull back and listen. As he thrashed around, he yelled the same thing over and over again: "Sky Block" (the mod he was in) was SUPPOSED to be in survival mode!" I stopped trying to fight him on that point because, like it or not, N saw it as a concrete, black and white issue and he wasn't going to see any gray. I knew that if I continued to push that point, he'd only escalate further.<br />
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Instead, I had to be flexible in my thinking. I had to validate my son's feelings because, whether I saw it a different way than him, <i>his feelings were legitimate</i>. I gave him a moment and then told him that I understood that it was frustrating for him because he wanted to play Minecraft the way it was supposed to be played. I understood that he was very angry that his brother refused to play the "right" way. My saying this calmed him somewhat and took the edge off his anger. I then talked about how we all have to learn how to do things and that some learn faster than others. I gave the example of riding a bike and how training wheels help a rider learn to ride. I told him that creative mode was like training wheels for a learning bike rider and that D needed his training wheels when he played. Not giving him his training wheels (creative mode) was kind of cruel since he wouldn't be able to ride (i.e., play the game). I saw a light in my son's eyes and could see that he got it. He switched back immediately (as he often does) to the sweet boy I know and he hugged me. My showing him that I understood what he was feeling and telling him that his feelings were legitimate made him feel safe and secure which then led to his being more flexible in his response to D. They continued to play with D in creative mode and they didn't fight about<i> that</i> issue for the rest of their time playing.<br />
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I think everyone deserves the right to have their feelings validated. When we refuse to validate another's feelings and experiences, we may miss an opportunity to connect with them, to fully understand their situation as well as help in times of struggle. When I think of pivotal times that my feelings have been validated after years of being ignored and/or disputed, I can still feel that sense of release that comes with it. I think of when my first, second and third children were diagnosed and, more recently, when I was diagnosed with Ehlers Danlos Syndrome. When professionals were poo pooing my concerns about my children, it was harmful to my family because our struggles were being belittled and unsupported. When my aches and pains were written off as being in my head or insignificant, I continued to harm myself unintentionally because I didn't understand that my hypermobility was making me more injury prone because I continued doing things as if nothing was wrong with me. Even if we as humans disagree with one another, we should validate each other's feelings and perceptions out of a sense of humility and respect for their dignity. When we validate another, we may also discover a truth unseen before and may be able bridge a previously invisible gap or we may be able to help another find answers to their concerns. <br />
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After my recent diagnosis I now look back on my life with a much better understanding. I can't help but feel resentment toward those who didn't listen to my concerns, but, more importantly, I recall my own self doubt that resulted injury after injury. Instead of malformed collagen, I thought maybe there was something wrong with me as a person. I realize now that I need to continue to remind myself that I need to fight for what I believe despite those who disagree. We mustn't depend on being validated to maintain our resolve which might sound like a contradiction to what I have said above but, with our children and our loved ones, we need to recognize the power validation has and to dispense it freely. If a child is surrounded by those who dispute their feelings, their self esteem is at risk and they may succumb to self doubt and may not flourish as well as they would if we recognize the legitimacy of their feelings, experiences and perceptions of the world. If, however, we validate their feelings and experiences at an early age, they will learn from us that their feelings are legitimate and, hopefully, will take that confidence with them to fight for what they believe in. Of course, everyone experiences self doubt but maybe our children can be armed with less. When I think of validating others, I find myself reflecting on the Sanskrit word (and gesture), namaste, which can translate as, "I recognize the divine in you." I think when we validate others, we put that into practice.<br />
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Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-80597407688946283932012-08-07T08:39:00.003-07:002012-08-07T08:39:57.447-07:00WaterloggedYou would think I would be a mature adult at this point in my life. Something about IVF, twins, and autism times 3 should have molded me into a competent, functional adult yet after my behavior yesterday at the community recreation center, I have my doubts. Here is the scene: I have just finished doing my exercises in the pool, involving swimming laps and walking backward through the lazy river, when I proceed to swim behind the seniors water aerobics class on the way to the stairs. For those who know me, I think most would agree that I am typically a polite and courteous person (especially with strangers since I am a Texan after all). I was swimming slowly and as far away from the class as possible (the class is not roped off and there were people around it) because I didn't want to disrupt the class. However, the older adult female teaching the class caught my attention and, with the tone of a teacher, pointed at the sign indicating a class was in progress. <br />
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I stopped and said, "Yes, I can read. I was just getting out of the pool." With a tone dripping with disapproval, she explained that I could simply walk. Now I should have just continued on and let her tone and attitude roll off my back along with the chlorinated water but the child in me couldn't resist responding in a way that my previous 13-year-old self would have applauded. I waved my fingers in the air and stated in a sappy, annoying tone, "Well, PARDON ME!" I then proceeded to the stairs and then to the hot tub. <br />
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Steaming figuratively and literally in the spa, I was trying to convince myself that my response, although relatively mild considering what filth can exit my lips, was justified and that I was being treated as a child by an older crowd of women. I also was puzzled by my emotional reaction to it because it simply hurt my feelings. I hate to be reprimanded for something that benign and when my intent was good. Then it struck me that part of my reaction had to do with the fact that I felt like they saw me as this young thing who is being careless and who may not have the troubles that they do (as was evident by the multiple canes propped by the stairs for their use). The irony was that I'm not that different from them than they realize and how dare they assume anything about me! I was ready for a show down with older ladies, and I realized that I needed to chill out.<br />
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What influenced my mood yesterday was the fact that earlier that morning I received confirmation that I have a rare, connective tissue disorder called Ehlers Danlos Syndrome (EDS). Simply put, my collagen is malformed resulting in hypermobility of my joints and early onset, degenerative arthritis. I was swimming because, at this point, it is the safest way for me to exercise without injuring myself. As a result of EDS, my joints will wear out sooner than most and I am more prone to injuries such as dislocating my knee cap, spraining and straining muscles, ligaments, etc. Technically, I would probably benefit from the seniors water aerobics more than they realized. <br />
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I also realized that it is highly likely that at least one of my children has inherited this syndrome. As I struggle to find my way to live injury free while staying healthy, I can't help but ponder how I will help my affected children with yet another diagnosis which will prove challenging to them as well.<br />
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So, I was childish and immature in my response. I also overreacted and took it too personally but I simply was having a bad day and, "pardon me!" wasn't in the mood for anyone's assumptions. I'm thinking I'll crash their next class and see what happens. Will they accept me despite my age, or look down their noses at my seemingly young, healthy self? Stay tuned for another segment of my battle with the waterlogged gals of Murray.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-28941133051738921052011-11-16T12:53:00.001-08:002011-11-16T13:26:06.310-08:00<!--[if !mso]>
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<span style="font-size: small;"><b><span style="line-height: 115%;">Opening Gifts Social Story and Games</span></b></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;">Opening gifts can be quite a challenging experience for children on the spectrum who have strong ideas about what they want and who also do not always filter strong feelings, particularly unpleasant ones. In order to prepare for my oldest son's 7th birthday party, we felt it was important to practice how to respond to a gift, particularly one we don't like. First, I created a social story which I read to all 3 boys before doing the two activities described below.</span><b><span style="line-height: 115%;"> </span></b></span></div>
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<span style="font-size: small;">The following social story explains 4 steps to opening gifts:<span> </span>1) Open card first; 2) open gift; 3) thank
the person for gift; 4) say only positive things about gift.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkXqQ4a9O-7lLxPxWne9kLgN_0hwgK1QKy8aRQbAaYq8d9rN9iuyXAixl6DlyaeO3-sdIadZuZfOVpPtAzgdv2XV5GGwbrF8JG3QM-XmRSvSTsQkAAjsKKBAhd20-mFpoTO4_gxH8s6zM/s1600/P1040804.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkXqQ4a9O-7lLxPxWne9kLgN_0hwgK1QKy8aRQbAaYq8d9rN9iuyXAixl6DlyaeO3-sdIadZuZfOVpPtAzgdv2XV5GGwbrF8JG3QM-XmRSvSTsQkAAjsKKBAhd20-mFpoTO4_gxH8s6zM/s320/P1040804.JPG" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBWdjlIJftCgwepMGn2EdhRbb41SeR6-9N56MMpygGAPi_Q3Hp1EJS51cpZuA_3P7WMz-YyNcouzJx3LPCkTQ3L8aQk5NR6NW62EGdJ1BSv-4Wta9YKWWzROKHs1_g26rn46ikYrkv1FM/s1600/P1040805.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBWdjlIJftCgwepMGn2EdhRbb41SeR6-9N56MMpygGAPi_Q3Hp1EJS51cpZuA_3P7WMz-YyNcouzJx3LPCkTQ3L8aQk5NR6NW62EGdJ1BSv-4Wta9YKWWzROKHs1_g26rn46ikYrkv1FM/s320/P1040805.JPG" width="240" /></a></div>
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<b>First Game:<span> </span>Think it
or Say it?</b></div>
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Explain that there are some things that are best left unsaid
and to be thought only in our head.<span> </span>Show
the two conversations bubbles and make sure it is clear that the one on the top is for phrases to only be thought and the one on the bottom is for phrases which
can be said out loud.</div>
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<span><span> </span><span> </span><span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3rbWuFzh2BAR-cnrwXC77X-1uOzR6RH3YiuYbMLV-euGfNdpS0oW148ki9T5S4H7Ta0MaCzHPw5tPkrzXEe9ymPmuNNFyd_JcC4Kd0XHWNR6uD81R5Rkv_l4YRmB27yKM46oVXGzOWMc/s1600/P1040800.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3rbWuFzh2BAR-cnrwXC77X-1uOzR6RH3YiuYbMLV-euGfNdpS0oW148ki9T5S4H7Ta0MaCzHPw5tPkrzXEe9ymPmuNNFyd_JcC4Kd0XHWNR6uD81R5Rkv_l4YRmB27yKM46oVXGzOWMc/s320/P1040800.JPG" width="320" /></a></div>
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<span></span><span style="font-family: Verdana,sans-serif;">Since we are working on improving social skills in regard to
opening presents, write several “good” and “bad” phrases regarding a pretend present on paper and have children
pick them out and then. . .</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzHcNGNAkLFqk1AMf_jwJNlDz84vbhn5YV9xubpJR8j2OhAfBmeZdzabZczSEc5BO3aJg8ALXiEhZVDFaFi09QgMeXyHeHUyDWxWcbf64LZDw_9yPbp6Jn8jA4tRztwFAs-19gjot3nNM/s1600/P1040801.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzHcNGNAkLFqk1AMf_jwJNlDz84vbhn5YV9xubpJR8j2OhAfBmeZdzabZczSEc5BO3aJg8ALXiEhZVDFaFi09QgMeXyHeHUyDWxWcbf64LZDw_9yPbp6Jn8jA4tRztwFAs-19gjot3nNM/s320/P1040801.JPG" width="320" /></a></div>
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<span> <span style="font-family: Verdana,sans-serif;"> </span></span><span style="font-family: Verdana,sans-serif;">.
. .have them place the phrase on the appropriate bubble as shown below:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqWfa60J1PGLtYgTkG-nITuty2lFB1rFCK3-xIgvXgKDR9HHEJRSHOwZ6iRaxx5Mf-WJh8cOzlj-4WmNZ64yi047jcwqVVj0wma3I0SfHkGJdIHjCerDZsovN9fgaP8ohaQE-2BJIyq0I/s1600/P1040802.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqWfa60J1PGLtYgTkG-nITuty2lFB1rFCK3-xIgvXgKDR9HHEJRSHOwZ6iRaxx5Mf-WJh8cOzlj-4WmNZ64yi047jcwqVVj0wma3I0SfHkGJdIHjCerDZsovN9fgaP8ohaQE-2BJIyq0I/s320/P1040802.JPG" width="320" /></a></div>
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<span><span style="font-family: Verdana,sans-serif;">One additional thing I included with the phrases were pictures of people's expressions. I had a grumpy face, a smiling face and a "blank" face. I acted out each expression while saying "thank you"in order to show how our expressions are believed more than our words. I had them put the appropriate expressions along with the phrases.</span></span></div>
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<span><b><span style="font-family: Verdana,sans-serif;">Second Game: Let's open presents! </span></b></span></div>
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<span> </span><span></span></div>
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I took the lesson one step further by creating a role play game involving opening
pretend gifts.<span> </span>I purchased cheap boxes from a
craft store and drew bows on them (in order to avoid having to worry with
wrapping paper):</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRk_NdEPc5RcQmQ-H63mOboj-sUeyFwzLw0YWk7GJFoRP7EnTSTc1Ei21_creENOSXr7b4O8iTXRKWICqFcmGw_tH5Too9eYtBz5CDjfmDRLLDAMz2pak1Z2RdJ-Q-lURDw1PRLHC7jr0/s1600/P1040806.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRk_NdEPc5RcQmQ-H63mOboj-sUeyFwzLw0YWk7GJFoRP7EnTSTc1Ei21_creENOSXr7b4O8iTXRKWICqFcmGw_tH5Too9eYtBz5CDjfmDRLLDAMz2pak1Z2RdJ-Q-lURDw1PRLHC7jr0/s320/P1040806.JPG" width="320" /></a></div>
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<span style="font-family: Verdana,sans-serif;">This activity may be done as a group or individually. When working with more than one child, place
something desirable in one box and something undesirable/less desirable in the
other. Read the social story first to
help remind them how to open gifts then hand each child a gift.
The goal is to have the child say “thank you” as genuinely as possible
when they open the “bad” gift. Repeat
the exercise enough times that all children have the opportunity to get both
the “good” and “bad” gifts. (When working
with one child, simply repeat the process and alternate when it will be good or
bad.</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLtxsjBuoPglfMQPgQw6juhNxnxaK3xLhVGXWclati7a-74WJFNVZZtCsG7Y-lsp14tvcgSXRsjpqgh-lslwJT_293CAyZpuZzz6Bw4njhoWBrJ0avDSpSyIpXPBL0bgyvbe1XWxbZOYY/s1600/P1040807.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLtxsjBuoPglfMQPgQw6juhNxnxaK3xLhVGXWclati7a-74WJFNVZZtCsG7Y-lsp14tvcgSXRsjpqgh-lslwJT_293CAyZpuZzz6Bw4njhoWBrJ0avDSpSyIpXPBL0bgyvbe1XWxbZOYY/s320/P1040807.JPG" width="320" /></a></td></tr>
<tr style="font-family: Verdana,sans-serif;"><td class="tr-caption" style="text-align: center;">Example of "good" gifts (candy)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikBbAD160JTIQvmjvowKLYqEh4iPLeLh4Y_Q4pJx1ubAqLA-ejhWmEkP2WdvNm6j3iKNF-MIXAtlvfrEWRM71Ae6qw1ctB1klW5eCdBbANhPWLFef2qqduyW8gc_rpA5rjiMBbO2pjtNM/s1600/P1040808.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikBbAD160JTIQvmjvowKLYqEh4iPLeLh4Y_Q4pJx1ubAqLA-ejhWmEkP2WdvNm6j3iKNF-MIXAtlvfrEWRM71Ae6qw1ctB1klW5eCdBbANhPWLFef2qqduyW8gc_rpA5rjiMBbO2pjtNM/s320/P1040808.JPG" width="320" /></a></td></tr>
<tr style="font-family: Verdana,sans-serif;"><td class="tr-caption" style="text-align: center;">Example of "bad" gift (staples). Keep in mind that safety is important. I would not suggest staples for those under 3 or for those who tend to place items in their mouth.</td><td class="tr-caption" style="text-align: center;"> </td></tr>
</tbody></table>
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<span style="font-family: Verdana,sans-serif;">I changed the “bad” gift each time so that they were not
getting used to reacting to just one bad item.
Examples of "bad" things you could use are:
buttons, a cotton ball, blank sticky note or anything lying around the
house which is neutral and safe but boring. With my children, they not only enjoyed the process, they went from exclaiming, "Staples?!!!" for example to "Thank you" with a smile on their face. It is a fun activity for all as long as everyone has equal opportunity to open a "good" gift.</span></div>Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-37615386418992719502011-08-22T08:06:00.001-07:002011-08-22T20:54:56.634-07:00My oldest's 1st day of 1st grade quoteFirst thing he said to his teacher when she introduced herself to him: "that's the funniest voice I've ever heard." <br />
Sent from my iPhoneCannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-1297309839029710902011-08-09T12:25:00.000-07:002011-08-09T12:26:27.046-07:00Driving lessons<p class="mobile-photo"><a href="http://1.bp.blogspot.com/-tX6oqoKRDjg/TkGJ5BQNRyI/AAAAAAAAATc/OQiNPqXLJHA/s1600/photo-787047.JPG"><img src="http://1.bp.blogspot.com/-tX6oqoKRDjg/TkGJ5BQNRyI/AAAAAAAAATc/OQiNPqXLJHA/s320/photo-787047.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5638939821126534946" /></a></p>My youngest insisted he knew how I should drive as we were stuck in traffic. "Cafe' car is strong. She could just crash into the car in front of us which would make the other cars go." I'll need to remember this when he gets closer to driving age. <p>This picture is of a car my oldest made with Zoobs.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-65492100956929349712011-07-28T09:33:00.001-07:002011-07-28T09:33:31.355-07:00No shame in our game!<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='400' height='326' src='https://www.blogger.com/video.g?token=AD6v5dwx1X4OBZukVe2r825iZUcbMPHwqrLN470PZInNKOMUx5o4wrn1i0to8gSW2n-Bxo4YCOpOexZTFFzkh7kirg' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-87373239786835160642011-07-28T09:28:00.001-07:002011-07-28T09:28:40.223-07:00Funny QuotesMy 4 year old on the spectrum was quizzing me about bees and how they made honey. I explained that bees got nectar from the flowers and took it back to the hive where they made the honey. He looked at me seriously, "What are the ingweedients?" <br> <br>My oldest with Asperger's showed his grandmother his hands which were wrinkled after being in the pool for a long time. He said, "Look, Mammaw, my hands are as wrinkled as you are!" Thank God she has a sense of humor!<br> <br>I was reading a book on idioms I had recently purchased and was telling my oldest about the history and meaning of the idiom "getting up on the wrong side of the bed." According to the book, in ancient Roman times, it was considered bad luck to get out of bed on the left side. My son thought about this and stated that he was "bed-a-dextrous" (playing off the word ambidextrous).<br clear="all"> <br><br> Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-65516837986152113062011-07-15T21:09:00.000-07:002011-07-15T21:09:39.350-07:00Thanks for the liftPeople often ask me how I do it. How do I get through the days raising my children - autistic as well as neurotypical? I always appreciate the sentiment since sometimes it's nice for our challenges to be acknowledged. No matter how many times I'm asked it, though, I never seem to find a good answer. These days, I tend to laugh and tell them they can come to my house and see what falls through the cracks. Here are the latest examples: a couch is in our back yard still waiting for the trip to the dump (we don't have a truck and we need help with lifting it); one son's room downstairs has half the carpet pulled up after a leak in the foundation which requires a simple repair that has yet to be done; we are wasting water with a leaking toilet (yes, I know, my enviro-karma is severely poor right now); we have a Lazy Boy in our garage that is also waiting for its last ride to the the landfill. If I were to add the things my children have broken to this (the second trampoline, a cabinet door, and so forth), you'd think our house was a wreck. It is and yet it isn't. <br />
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Most things related to the children's day-to-day activities are organized: monthly calendar, daily schedule, chore charts, map charts, self serve bins and so forth. Essentially, it comes down to triage. It would be crass of me to imply that we are unique in how we have to prioritize our household/life to-dos. I do think ours is a bit unusual and, unlike some, our busy-ness is not by our choosing. Prior to having kids, I remember thinking how busy I was and that I never seemed to get anything done. Now, I realize how much time I did have because I still had time to do non-essential things such as go to a movie, the neighborhood pub, chit-chat on the phone, watch TV, and so forth. Today, it is hard to find the time to do the essential things: prepare for my son's upcoming IEP (special education) meeting, cook more than chicken nuggets, get my kids' medicine at the store, spend special time with my typical son who is feeling left out, and so on. Compared to these things, the small crack in the foundation, the lovely couch in the yard (I jokingly consider this our white trash display), or the leaking toilet are annoyances that we'd like to address but which are overshadowed by what my husband and I find most important: our family, our sanity and our basic survival.<br />
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I would be remiss if I didn't also point out that, in addition to prioritizing our life a wee bit differently, we are fortunate to have a wonderful support network. What does support for a family like ours look like? It's quite varied but all equally helpful and appreciated. From the speech pathologist who celebrates your child with you to the occupational therapist who teaches you ways to help your child navigate his/her world more comfortably; from the mother-in-law who unselfishly watches your children even if her back doesn't feel great to the awesome respite worker your children love; from the consultant that tells it to you like it is without making you feel like dog doo to the friend who brings you cookies because she knows you've been having a rough time; to your Mom and Dad who are always a phone call away and listen patiently to all the crazy emotions you struggle with day to day. All these ways help. So, when people ask how I do it, the best answer is that we are all doing it together and, despite how I may feel at times, I am certainly not alone.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-85433322255561450372011-06-19T07:47:00.000-07:002011-06-19T07:47:50.700-07:00Happy F'ing Father's DayI recently read a good post about trying to find a good Father's Day card for a father of a child with special needs. Here is the link: <a href="http://utahmaks.blogspot.com/p/perfect-fathers-day-card_05.html">http://utahmaks.blogspot.com/p/perfect-fathers-day-card_05.html</a>. It's a great post, although it's a little nicer than I am as you can see by my title. You would think that Father's Day for a father of children with special needs would be a massive celebration because it should be. My husband deserves a <i>fantabulous</i> Father's Day. He deserves a day dictated only by his desires, his needs, his wants. Instead, he will be subject to the daily difficulties and upsets. Complicating things, his work is hounding him (he has to work at midnight tonight - lucky him), and I have been made temporarily useless after a seemingly minor back procedure.<br />
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I can relate to the anonymous author of the post above. When I was looking for a Father's Day card, I found myself laughing out loud at how different typical father's lives must be. Since the cards are for the majority of the population instead of us deviants, it's a bit of a slap in the face to be reminded that my husband could have an easier life. I realized that I needed to reinterpret what Father's Day means to our family. Instead of a manly day of rest and play, it's should be a day for me to honor him for not giving up, for loving his sons even when they don't appreciate him - which is too often, for loving me even when I'm stressed out and unable to just be his wife instead of a mom of special needs children. This Father's Day, he may not smile as much as I'd like or he may not be as relaxed as I would want him to be but I will show him my appreciation as he and I as a team meet the challenges of autism head on together.<br />
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Although I was tempted to buy an "encouragement" card which seemed more fitting, I finally found a Father's Day card which I took the liberty of editing by adding some things to the pictures and including my own conversation bubbles to make it fit us and him better. I hope it at least makes him smile and the he is aware that he is incredibly special to me and the children and that, although it can be very difficult, we appreciate him for rising above it all despite its difficulties.<br />
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With love to my husband of nearly 10 years. Smooch.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-24569938404905028562011-06-18T20:37:00.000-07:002011-06-18T20:37:38.979-07:00Nothing to shrug offI'm curious what my body language is telling everyone as I lay around the house while recovering from a minor back procedure. Do I look like I'm feeling sorry for myself? Do I look happy as my boys bring me flowers, bring me water and blankets? I definitely hope the latter. Although the procedure was minor, the recovery had an unexpected twist involving the possibility that I could lose feeling in my legs without a moments notice and I could fall flat on my face. Of course, this risk is only for the next few days but it would have been nice to know prior to my scheduling it! Anyway, perhaps I'm odd because, instead of eating Bon Bons and watching chic flicks, I have spent the last two days reading a very interesting (to me) book about nonverbal behavior.<br />
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The book is titled, <i>Helping the Child Who Doesn't Fit In<iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=aspwis-20&o=1&p=8&l=bpl&asins=1561450251&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></i> by Stephen Nowicki, Jr., Ph.D. and Marshall P. Duke, Ph.D. I personally find the title to be seriously lacking because, until I began to read it, I had no clue that the entire book was about nonverbal behavior and how it impacts one's success in social settings. I probably would not have picked up the book had it not been cited in another book I had read which I can't seem to recall at the moment. <br />
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So often when I read books that in any way might relate to autism, I find myself rarely surprised by new information. I may gain a better understanding of something of which I am aware but I've read enough now that my notes for each book seem to get smaller and smaller. This book, however, was a refreshing eye opener and offered more insight into deficiencies people with autism may have in regard to interpreting the non-verbal signals of others and/or expressing their feelings non-verbally. Also, it is important to note that I never saw the term "autism" used throughout the book, although I do admit that I did just skim the last two chapters regarding assessment since I felt that we have had sufficient assessment thus far and also that, since it was published in 1992, things have likely improved or changed since then.<br />
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The authors opened my eyes to the important role that non-verbal communication (NVC) plays in our ability to interpret the feelings of others and our ability to express our own. According to Nowicki and Duke, only 7% of emotional meaning in communication is expressed via words. In other words, 93% of our emotional meanings are expressed via NVC. That's quite significant.<br />
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What I also found fascinating is that when NVC and VC are discordant (in other words, when they don't match each other), NVC is more often interpreted as being the true feelings of the speaker. A great example of this is the use of voice tone (NVC). By manipulating our tone, which is considered paralanguage since tone in itself is not words, we can say to someone, "I hate you," while actually conveying via tone, "I love you" or vice verse. The power of NVC to affect communication is much stronger than I had originally realized.<br />
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The authors list 6 main types of NVC which impact communication. They are 1) Rhythm and use of time, 2) interpersonal distance, 3) gestures and postures, 4) eye contact and facial expressions, 5) paralanguage (sounds without words), and 6) style of dress and hygiene. Deficits in NVC can occur in our ability to interpret how we receive NVC from others (receptive) as well as in our ability to express our feelings non-verbally (expressive). As I read through each chapter detailing each of these types of NVC, it became clear how often many, if not all, of these areas are often a difficulty for persons with autism.<br />
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In addition to describing NVC and the impacts of deficiencies in any of the types of NVC, the authors provide specific steps which parents and teachers may use to assist children who have difficulties in any of these areas. An example of a suggested activity one can do to assist these children is playing charades that involve interpreting or expressing gestures, tones of voice, facial expressions and so forth. Also, creating "dictionaries" of facial expressions, gestures, etc. The ideas they provided are helpful and have inspired me to begin creating a NVC program for my boys.<br />
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Finally, another point that I found particularly profound, although seemingly obvious, is how people with NVC deficiencies are viewed by others and how this differs from how a person with verbal deficiencies is judged. The authors give the example of a person speaking with poor grammar. People listening to this person are likely to view them as unintelligent or uneducated. When a person uses inappropriate NVC, such as sitting right next to a person in an empty movie theater instead of sitting somewhere else, the person is likely to be viewed as odd, crazy, weird and even dangerous. The difference in how these deficiencies are judged helped me realize how important it is that NVC be a factor in assisting persons with autism to learn to interpret and use NVC better in order to improve their social acceptance.<br />
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So, I'm now reclining like a queen on my throne feeling like I didn't waste away the day watching silly movies. My facial expression probably shows some fatigue, my hygiene is definitely questionable since I'm not allowed to bathe until tomorrow (yuck!) but I think that I probably show a bit of pride for having found some more useful tools which may help my little monkeys with this wild and wacky world they've been thrown into. Now for my paralanguage, "ZZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzz." Good night.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-23417813963157182342011-05-29T20:29:00.000-07:002011-05-29T20:29:57.680-07:00Sacred space, sacred timeWhen I'm wallowing in my deepest funk, everything about my life looks and feels like Hell. Hardly anything can penetrate the despair that envelopes me. Let's face it, when autism sucks, it SUCKS. It can be ever present, ever incapacitating, ever stressful, ever sad. Of course, yes, there are interesting, fascinating, and even fun aspects of autism but not enough to compensate for the overwhelming impact it has on the entire family.<br />
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Now, when I refer to autism sucking I'm not saying that my children suck. I love, adore and live for my children. Even when I'm outwardly mad at them for acting autistic (as if they have a choice!), I know that it's not their fault. They didn't ask for the neuro-developmental slap in the face. They didn't ask to struggle every day with anxiety, frustration, and confusion. They had as much choice in being autistic as my husband and I had in having children born with autism. <br />
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When I'm having a dark day and I feel like I can barely keep going, I have to make a choice: do I resign myself to this feeling of despair and sadness, or do I get off my figurative butt and shake off the sense of powerlessness? I'm fortunate that I was born with a stubborn resolve to be happy. I cannot tolerate being sad so I do everything I can to make bad situations better. Like anyone, though, life slaps me around and I find myself cowering, afraid to respond to what she has given me. It is in those moments, that I find myself craving the sacred, the divine.<br />
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As I've mentioned before, I'm not Christian. I have had the fortune of being exposed to a variety of faiths and I find that all faiths are filled with divinity. I think for those of who feel the need for the sacred, we know where to find that sense in our self, that connection to the divine even if you don't believe in God per se. I find that when I'm at my lowest, I retreat within myself and search for that peace, that love and acceptance which restores me.<br />
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Of course, I'm not suggesting anything new by saying that it's good to relax and reflect when times are tough. The trick when raising children on the spectrum is finding a way to access that when melt downs are occurring, when the house may be filthy, when they are repeating themselves over and over, when you simply can't get away. I can't help but recall a funny quote I read on a coffee cup the other day which stated, "If by 'happy' you mean trapped with no means to escape. . . ? then yes, I'm happy." It's during those moments when you know what you need to feel better but you simply can't escape to do it that the need for a sacred space and sacred time is essential.<br />
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By a fluke, my little monkeys did me a favor when they misbehaved several weeks ago. My twins were having a blast in the bathtub downstairs. We were nearby and could hear their squeals of laughter so we weren't concerned about their safety or anything. Then we heard a loud bang. Nothing like those lovely moments of racing to find out what has happened now. Apparently, the boys thought throwing a cup full of water high up in the air was hilarious until it hit a light bulb above the sink and subsequently knocked out the power in the bathroom. <br />
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We debated about calling in an electrician. We ended up putting it off long enough that I had an idea. I would make this bathroom OUR (my husband and my) bathroom and we would only use candles in it or would just enjoy the sun streaming through the window. Over time, I've been slowly making this bathroom our own by placing candles and natural oils in it, by stocking it with lovely soaps that smell heavenly, and so forth. Every day, when I take a shower, I light all the candles and make time to find comfort in this short ritual. Even on days when I'm not really into it, I go through the motions of lighting the candles and, once finished, pausing to find my inner strength before blowing out each candle. It won't make the bad days go away. It may not even keep me from falling into states of sadness but the act of intentionally making time to nurture myself despite the stress is very restorative and often helps me to remember that I'm part of this whole equation, that there is more to me than being the parent of children, on and off the spectrum. <br />
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I'm working on finding other opportunities to find the sacred throughout my day. From listening to music that stirs my soul to reading quotes that make me feel strong, I'm making the conscious decision to make those moments occur because they are important, because I am important. I hope you may also find such rituals and moments to nurture yourself.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-44922951538796893612011-05-13T10:59:00.000-07:002011-05-13T10:59:59.793-07:00A powerful lesson for neurotypicals (NTs)<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">Last night, autism has taught me yet again that my neurotypical (NT) viewpoint is limited and that there is an endless amount of wisdom to be learned from those with autism.<span> </span>In 100 cities at 7:30 p.m last night, the exceptional movie, <i>Wretches & Jabberers</i>, was played, and I was fortunate enough to be able to see the movie.<span> </span>If I had my way, I would want the film be made available throughout the country and the world.<span> </span>As the number of those directly or indirectly affected by autism continues to increase, it is of paramount importance that films such as this be shown.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The film documents the advocacy efforts of two autistic men, Tracy Thresher, 42, and Larry Bissonnette, 52, who travel to Sri Lanka, Japan and Finland to show the world that their outward appearance and behaviors mask the true intelligence and competence hidden within “the beast” as they often refer to autism.<span> </span>With the help of keyboards and assistive technology, Tracy, Larry and fellow autistics who they meet during their travels, not only communicate their thoughts effectively but in a manner which can only be described as poetic and profound.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Flapping, shrieking and making frequent unintelligible sounds, both men exhibited the signs of what is viewed as severe autism.<span> </span>By the unaware NT world, they would be viewed as mentally handicapped and learning disabled.<span> </span>Society would not expect much from them based purely on their outward appearance.<span> </span><i>Wretches & Jabberers</i> forces the NT viewers to realize what an incredible disservice it is for those of us who can verbalize our feelings, who can behave “typically”, to believe that those such as Tracy and Larry are nothing more than poor souls who are barely capable of daily living.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Traveling across the globe, meeting with students and speaking at conferences, Tracy and Larry speak unflinchingly about how difficult it is to be trapped in such a state, being judged as unintelligent but being unable to communicate that they knew exactly what was going on around them.<span> </span>Even as a parent of autistic children, both of whom are verbal, my eyes were opened by how truly the same we all are.<span> </span>What may seem like profound differences between NTs and autistics is blurred and challenged with each question Larry, Tracy and the other autistic persons answered and each thought which they shared.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">What I find myself further awed by is that Larry and Tracy never showed resentment or anger toward those who misinterpreted (or continue to misinterpret) them.<span> </span>I find it difficult to imagine that they don’t have those emotions but, in their tireless effort to advocate for the autism community, they present their world to the NT world in a manner which is positive, often humorous, truly beautiful and forgiving.<span> </span>I can’t help but feel fortunate and encouraged that we may be able to expand this opportunity to connect with our fellow humans who have been dealt a difficult card with autism via the help of assistive technology.<span> </span>I can’t help but feel deep regret and remorse for those who, in the past, were severely underestimated and mistreated and for those who currently are trapped in a world without speech and who are judged ignorantly by those who deem themselves to be superior in knowledge and abilities.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I truly appreciate those who have made this film possible and for opening my eyes yet again to the beauty often hidden within our fellow humans affected by autism.<span> </span>In tribute to two very brave men, I am sending a toast out to Larry (who loves beer too) and Tracy.<span> </span>As the parent of children who are often misinterpreted, I am truly grateful that they have shared their message with the world.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">(Visit their website at <a href="http://www.wretchesandjabberers.org/about.php">http://www.wretchesandjabberers.org/about.php</a>)</div>Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-73480250621631998362011-05-08T20:24:00.000-07:002011-05-08T20:24:32.804-07:00The cloud evaporated me and then rained meOff and on over the last few weeks, I have been reading Charles Hart's <a href="http://www.amazon.com/Without-Reason-Family-Generations-Autism/dp/0060161434?ie=UTF8&tag=aspwis-20&link_code=btl&camp=213689&creative=392969" target="_blank">Without Reason: A Family Copes With 2 Generations of Autism</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=aspwis-20&l=btl&camp=213689&creative=392969&o=1&a=0060161434" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />. As the subtitle suggests, Charles Hart provides details regarding his life growing up with an autistic brother and, later, raising a child with autism. Not only does Hart provide an historical perspective of the changing attitudes about and treatments for autism over several decades but he also provides insight into his own understanding of autism as a younger brother of a severely autistic man as well as the father of a son who is autistic. Not only have I found the book to be informative and insightful, Hart's frankness and honesty is reassuring and comforting. Although my children are higher functioning in some regards than his brother and son, I can relate to many feelings and situations he describes and Hart provides a perspective that I find quite interesting and thought provoking. I don't typically dog ear books but, looking at the book now, I see that I may need to consider having a highlighter handy while reading it. <br />
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Unexpectedly, Hart's book is helping me cope with my own feelings about raising two children with autism as well as raising a typical child. One thing that I have struggled with since my boys were diagnosed is allowing myself to process the difficult emotions. When I feel grief creeping up on me, I try to redirect my thoughts. When I feel envy of others whose children are typical, I find myself avoiding their company. When I want to simply cry because my children seem so much more vulnerable and misunderstood, I swallow it because it is too much to bear. When I'm sad for my typical son whose life is so affected by his brothers, I suck it up and give him more and more hugs. For some reason, Hart's book has broken down some of my defenses and allowed my emotions to break through. As we sat at McDonald's tonight celebrating Mother's Day (because that's one of the few places we can take our kids to eat), my husband and I laughed at how empty McDonald's was. Apparently, McDs isn't the Mother's Day hot spot. <br />
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I was secretly glad that it was rather empty, though, as my sweet, oldest son jumped around and cornered the few children who were there. Repeating the same script each time, he approached them and said, "Hi. I'm (name). What's your name?" Sounds perfectly civil but to young children, his proximity to them, his mannerisms and his almost aggressive presentation baffled them. Some would answer but wander off. I appreciated those children far more than the ones (I am thinking of a girl in particular) who simply looked at him then turned their head as if he wasn't worth talking to.<br />
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My sweet son who wants friends but does not have the social understanding to make them continued to make efforts and even believed that he was making friends. I can be thankful for his not understanding how the children were responding to him. In some ways, I hope he doesn't lose that because I would hate for him to feel rejected. Unfortunately, he needs to understand people in order to make friends so, in order for him to improve, he will have to experience this pain that I already feel so acutely for him.<br />
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As I watched my son, I found myself choked up. I love all my children. Each is so special to me. Right now, though, my oldest seems the most vulnerable and "different" so, although I don't love him more than my other darlings, I can't help but want to shelter him, protect him and force others to see his beauty. I know the world may not welcome him as I think he should be but I'm pretty damned determined to do my best to help him.<br />
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As I reflect on his disability (which I'm coming to grips with each day), I can't help but think of his amazing abilities. He sees the world in a way that I can't fathom. Although he experiences deep sadness and anxiety, he also experiences love and beauty in a way that I could only hope to experience myself. I often am amazed and baffled by the things he says. Sometimes, he'll say things that I can't understand at all. Other times, I am just in awe. My Mom sent me an email he had sent her today and, as odd and somewhat nonsensical as it is, I found it to be poetic and beautiful. Here is my son's email:<br />
<blockquote>"hi.today i went outside and the cloud evaporated me, and rained me, i went right thru a transformers book and landed at sari's house." </blockquote>This was written by my 6 year old without my knowledge, influence or assistance and I find it very moving. After reading it, I found myself repeating the phrase "the cloud evaporated me, and rained me" and found it to be so beautiful. In a way, I feel that my son has evaporated me and rained me by changing me so drastically since his birth and, although, it has been difficult, he has released parts of me which I hope will help nourish he and his brothers and to influence the larger community to better understand and accept all these beautiful souls.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com2tag:blogger.com,1999:blog-5587119267616127908.post-46876099221414611412011-03-19T20:31:00.000-07:002011-03-19T20:31:04.127-07:00Little tricksMore often than not, when I'm writing on my blog I'm talking in broad terms and focused on the emotional impact (good and bad) of raising children on the spectrum (as well as one who is not). I am hoping to expand the range of topics on my blog by including occasional posts which will discuss tools that have worked in our home. I may also begin providing regular, short posts which will include amusing anecdotes and quotes from my children that are often very funny and amazingly wise. <br />
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I will begin with the latest tool that we have been using to help us manage the many chores that need to be done in our house on a daily and weekly basis. I purchased a folder from a teacher supply store which has a pocket for storage on the inside of it. The following is a picture of our chore chart:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyFcv1PE8ISPUvT-Q-R2yunfBuMrMsmBsgFOwz59cj5KTFdx01Q2yumHyLeTYGXgEs6znkkvQkHWXDMjMdwquomDvmvGaG01SynyE47PXnn6NHMChzHE3HpMs5vFwIheCCDPqAu7aI56U/s1600/IMG_2033.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyFcv1PE8ISPUvT-Q-R2yunfBuMrMsmBsgFOwz59cj5KTFdx01Q2yumHyLeTYGXgEs6znkkvQkHWXDMjMdwquomDvmvGaG01SynyE47PXnn6NHMChzHE3HpMs5vFwIheCCDPqAu7aI56U/s320/IMG_2033.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The chores to be done are listed on the left and the chores which have been done on the right. The chores shown are those which I have selected for the day. All other chores are stored in the pocket of the folder to be used on days I feel we should do that chore. When a chore is completed, we move the chore from the "to do" side to the "done" side. The boys enjoy pulling the chore off the velcro and placing it under their picture.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonBac1jzZ9zYieeEmZ96nE75o_Q81Lq4P1qaD_cEhM74e1vp6ZLz1N0JP3P3bdgiA3uLYHhHqr0WbiicUkpJNSQzn-LF6fOYtaMXQPLo_JzyRsGTYP4lV1TTJbf7qT7FrEIqekLKN2c4/s1600/IMG_2034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonBac1jzZ9zYieeEmZ96nE75o_Q81Lq4P1qaD_cEhM74e1vp6ZLz1N0JP3P3bdgiA3uLYHhHqr0WbiicUkpJNSQzn-LF6fOYtaMXQPLo_JzyRsGTYP4lV1TTJbf7qT7FrEIqekLKN2c4/s320/IMG_2034.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the front of the folder, I have placed a list of all the major chores we do in our house. I have also included what frequency the chores should be done (ideally). Having this list on the front helps me review all the chores we may need to do since I can't always remember during the hustle and bustle of the morning.</td></tr>
</tbody></table>We also have a daily schedule listing all major events of the day, including chore time. I prefer to have a chore time in the morning and one in the afternoon. The one thing to keep in mind with using a chore chart, particularly with young children, is not to expect them to be able to do a perfect job at each chore. As far as I see it, having the boys see all the chores that are essential for a household to function is an important life lesson. Teaching them how to perform the chores provides them with tools which will hopefully help them gain a healthy amount of independence as they grow older. At the end of the day, I often point out who has done chores and give them praise for their help. It's incredibly rewarding and satisfying to see all the chores completed and for the chores to have been evenly distributed among all family members. One thing I like to remind myself is that teaching children how to live life may not be a class in school but it is perhaps equally if not more important than learning math, science or history. Ideally, in my opinion, it's fabulous when math, science or whatever is taught as a part of daily living. Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-12143661707550853212011-02-27T08:00:00.000-08:002011-02-27T08:00:00.478-08:00Big, fat lipThe familiar feeling of dread, apprehension and worry weighed on my shoulders as I drove my 4 year old with high functioning autism (HFA) to the dentist. This was his second visit. Since his first time at the dentist was a rather pleasant one (by design), he was focused on receiving his reward from the toy vending machine at the end of his appointment. Feeling like a bit of a liar, I cheerfully talked with him about the dentist on the brief drive. I knew he was getting a filling and I had no idea what to expect. Since he had done so well with his very brief cleaning, the pediatric dentist who specializes in working with children with special needs felt my son would be able to handle this relatively quick procedure without any sedative or calming agent. I was a bit skeptical, although I was willing to try this since our dentist had done wonders with our oldest son.<br />
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The appointment went better in some ways than I anticipated but there was a brief period when he was drilling the tooth that my son tried to jump off the chair and it took the dentist and his assistant to keep him seated in order for him to finish. I tried to remain in the chair designated for parents and was amused when I realized that my chair wouldn't scoot forward. Perhaps they didn't want me right up there in the middle of it. They probably should have tied me to the seat because I couldn't help but lean over and pat his legs, feeling helpless watching him struggle while guilty for making him go through this procedure.<br />
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Before long, thankfully, it was over. Sigh. Dora's song, "We did it!" ran through my head but I resisted the urge to do a little dance. Of course, here is the unexpected moment that I really should learn to anticipate. As we were leaving and I was talking with the dentist, he pointed out that I needed to make sure that he didn't bite his lip which would be numb for about another hour. At that moment, I looked at Dylan and he was already examining his lip with a confused expression. "My lip feels funny." We explained that it was asleep but it would wake up soon. I told him to leave it alone but I became concerned since one of my son's "issues" is that he becomes agitated when things are not what he deems to be "right." <br />
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I turned to talk with the receptionist then walked with him to the door. As we opened the door, I glanced at him and saw that his lip was bleeding. Upon closer examination, I could see that within that brief moment he had taken a nice hunk out of his lip. Blah! Turning around and directing my son back into the place he was very interested in leaving, I showed the dentist his lip. Since this was not unexpected for him, he was not as freaked out as I was and he explained that it would swell and look like a canker sore but would be fine. He suggested that I find something else for him to chew on until his feeling came back. Great idea but I had no idea what I could give him until I remembered that we had what I refer to his chew toy in my bag. Whew!<br />
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After feeling the relief of the procedure over, I had a renewed sense of concern as I drove home because I knew it was likely my son would continue to bite his lip despite having his chew toy. Glancing back at him as often as I felt safe to do so, I monitored him and repeated my instructions, "Chew toy in your mouth." "Put it back in your mouth." "Don't bite your lip."<br />
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Returning home, I was thankful that my mother-in-law was there to help me keep an eye on him as we juggled my other two children. Eventually, the feeling returned and amazingly he didn't seem troubled by his now very swollen and nasty looking lip.<br />
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It seems like there is no end to the many lessons to be learned as a parent, particularly of a child with special needs. At moments like this, I feel that I too get a bit of a big, fat lip as I stumble into yet another challenge to muscle through.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-74944999758204394332011-02-26T09:46:00.000-08:002011-02-26T09:49:56.997-08:00Keeping me in stitchesWhen we first moved to Utah, I stumbled across an advertisement for sewing classes. I had practically no experience with sewing but was unexpectedly attracted to attending a class to learn this seemingly foreign skill. Once a week for several weeks, I escaped the chaos and unpredictability of home and entered the pretty, girly, and organized classroom which was held in a beautifully decorated, historic home. Surrounded by lovely bolts of fabric, listening to the quiet hum of machines sewing, I fantasized about the many sewing projects that I would be able to do now: dresses for me, shirts for my husband, clothes for my boys.<br />
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Over the next months, I collected patterns, fabrics and more fantasies. Slowly, I began to organize my materials even creating a sewing area in our bedroom. It was lovely. I did manage to sew myself a dress and the boys some shorts and pants but my sewing came to a halt once my first born was diagnosed. The next time I removed the cover from my sewing machine, it wasn't to sew dreamy outfits. It was to sew weighted blankets, lap pads, body socks, weighted vests, and so forth.<br />
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I don't regret having taken my class. I'm pleased actually that my new skill is helping my family. I'm simply reminded yet again of the frequently quoted saying among those affected by autism: expect the unexpected. It seems that no matter how much I remind myself off this, I find myself frequently surprised.<br />
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Upon opening an email last night, I found myself darkly amused. Normally, when I think of fabric, my mind tends to drift toward Amy Butler's fabric for instance: beautiful, girly, upbeat, colorful fabric. The email I received last night had the subject line of "Fantastic Fabric". The girl in me thought, "ooooh" what is this? As I read the description of this fantastic fabric, I couldn't help but laugh. Instead of reading the description of some delicious fabric, I read the following: <br />
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<i>It remains soft until it is hit or bit or other physical confrontation, at which it instantly hardens then goes back to soft when attack is over.</i><br />
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I read it again.<br />
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<i>It remains soft until it is hit or bit or other physical confrontation, at which it instantly hardens then goes back to soft when attack is over.</i><br />
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What? Even though I have been hit, bit, scratched, kicked and so forth enough times that I should have gotten it, my brain seemed to reject this description of the fabric and I even questioned whether this was a joke. Surely, it can't be that bad, right?<br />
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I'm not sure how many times I reread the email before I truly understand the wondrous nature of this fabric and how useful it could be, particularly for those families whose children suffered from frequent aggressive outbursts. I thought specifically of a mom friend of mine who has a new scratch or bruise every time we get together. This actually is fantastic fabric!<br />
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As much as the fabric sounds wonderful, though, it is far more expensive than any Amy Butler fabric I would buy or even the Lycra fabric I am constantly seeking for new occupational therapy products. For a sleeve alone, it costs around $120. For now, I think I can handle the occasional bruise and I hope that I never feel that $120 is a cost worth spending. I am glad that it is available though because there are many families who will find it to be a blessing.<br />
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After accepting that the email was not a prank and contemplating yet again how stressful autism can be on the entire family, I recalled a blog post that I had read recently (<a href="http://draft.blogger.com/%28http://momnos.blogspot.com/2011/02/asd-and-ptsd.html%29">http://momnos.blogspot.com/2011/02/asd-and-ptsd.html</a>) which suggests that parents of children on the spectrum frequently exhibit symptoms of post traumatic stress disorder (PTSD). As much as I can relate to certain aspects of these feelings, I am fortunate to not feel that I suffer from it, although I certainly relate. I would imagine that those parents who are tempted to purchase the fantastic fabric, however, would definitely be at risk of suffering from many, if not, all of the symptoms.<br />
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I was recently asked how I dealt with emotions toward my sons after being hurt by them during meltdowns. I had been telling her about when my oldest threatened to throw chemicals in my face once during a particularly bad meltdown. She wanted to know how that affected my feelings toward my son. I explained that there were the immediate emotions of being scared, sad, angry, confused and so forth. If I didn't love my son and didn't understand how challenging autism is for him, I might have continued feeling that way for a while. Instead, though, I took time to get away once my husband got home and processed these emotions. As all parents have to do to some degree, I reached into my heart and found that strength and love for my son. I found the courage to try to understand him, his perspective, his autism, and to ultimately forgive him. Of course, I did immediately move the already out of reach chemicals to an even more out of reach area!<br />
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Instead of blaming him, feeling betrayed by him, for what he had done, I studied the situation, I talked with him and we found new strategies to help him with his extreme emotions. Fortunately, he has continued to make excellent progress and I'm hopeful that he will continue to learn how to recognize when he is upset and take steps to avoid an aggressive outburst. I will continue to also remain hopeful that we won't be needing to buy any fantastic fabric unless it's some lovely, beautiful fabric for a dress for me.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-48199292693611350752011-02-21T22:10:00.000-08:002011-02-21T22:10:20.672-08:00Lost Control. Found Acceptance.Sooner or later, each of us has to learn the lesson that we are not in control of every facet of our life. No matter how much we believe something to be true or how much we want something to happen, it, whatever it may be, may not be true or may not ever happen. Sometimes we know this intellectually and may even be able to refer to events which didn't go the way we had hoped, but the lesson isn't truly learned until something you take for granted, something which is seemingly indisputable, real, definite becomes something entirely different.<br />
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I intended to get married. I intended to have children. There were times when I wasn't sure if I'd ever find the right man for me but, once I found him, the next step was a child. I recall my soon-to-be husband and I walking through a crowded city fair when he pointed to a small child and said, "I want one of those." Definitive, indisputable.<br />
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As it turned out, we spent years trying to have children and only succeeded after several rounds of in vitro. There were times we weren't sure if we'd ever have children. <br />
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We then had our first born son. My vision of raising our child involved fantasies of staying at home raising him, sharing the world with our child. Together as a happily married couple who had overcome infertility, we were going to raise our son as we had been raised. From the beginning, though, things were different. He cried when gifts were opened - the sound seemed to bother him. He cried for hours and seemed inconsolable. He resisted being held closely in order to breast feed. My maternal feelings were rebuffed and I found myself repeatedly failing and often confused. Indefinite, disputable.<br />
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Since we were growing older and because we already had had difficulty getting pregnant the first time, we opted to try again. Although we still found ourselves confused about our son's behavior, we felt more confident that we could have another child. Another child. We became pregnant with twins.<br />
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At this point, we became overwhelmed by our life. We had chosen a path thinking we knew where it led only to find we were mistaken and we were frightened. How were we going to manage? <br />
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Obviously, we immediately felt love for the twins who made themselves at home in my quickly growing belly. We eventually got over the initial panic and began to believe we were taking control over the situation. New house, new car, new job. More cribs, better stroller, books on twins.<br />
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Preterm labor. Bed rest for 6 weeks - 4 of which were spent in the hospital. The more we tried to control the situation, the more it was out of our control. Each time we found ourselves in an unexpected situation, we began to adjust to the change in plan quicker, we began to accept things as they were more readily. By accepting the situation and moving forward, we regained yet again a sense of control. Definitive, indisputable.<br />
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Then our first born was diagnosed with a form of autism. It explained a lot but this was not supposed to happen. His behavior was not supposed to happen. The stress in our home was not supposed to be there. Answers needed to be made available and they continued to elude us. Autism is anything but clear cut and concrete; however, a year after his diagnosis we began to feel a little more confident. We had found resources that were helping us define and understand his behavior.<br />
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Then one of our twins was diagnosed with autism and we found ourselves yet again surprised. We had been doing everything in our power to make our life better and new challenges kept presenting themselves. Just when we thought we were doing ok, we were side swiped again. No longer truly surprised by life changing, we then became angry because this simply was not fair. Why us? Why our beautiful children?<br />
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It has been a few months since our youngest was diagnosed with high functioning autism. It has been over a year since our first son was diagnosed. We have learned a lot during this time. We speak the language that parents of children on the spectrum speak: "Stimming," "sensory processing," "melatonin, Resperidone, Zoloft" and so forth. We continue to navigate this world but we have a new found respect for life's ability to change without notice, plan or schedule. We no longer think in terms of definites but merely in possibilities and maybes. We know our own strengths and weaknesses more than we'd ever expected and we are learning to accept what is simply for what is. Although this may seem to be resignation, acceptance of what is regardless of whether it was in our plans is a power far stronger than having the naive (although understandable) sense of control over one's future. <br />
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As much as I'd like to believe that we will find more answers and that if we simply keep working hard things will turn out in a way we hope, I also have to accept where we are right now for right now is the only thing which is definite and indisputable. It is my job to make the best of it for me, my husband and our children each moment at a time.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-26319207117849721662010-09-24T15:48:00.000-07:002010-09-24T15:48:31.465-07:00Controversial meIn a recent appointment with my oldest son's occupational therapist (OT), she indicated that my son needed help with his proprioception which is defined as: "<span class="owner " type="INSERT"><span class="bps-assembly-container bps-assembly-left bps-mag"><a class="bps-assembly-image" href="http://www.britannica.com/EBchecked/topic-art/479258/68878/The-membranous-labyrinth-of-the-vestibular-system-which-contains-the"><span class="bps-add" title="Save to My Workspace"></span></a></span>the perception by an animal of stimuli relating to its own position, posture, equilibrium, or internal condition." As I was contemplating my controversial beliefs about how my oldest should be educated at this point in his life, I realized that I too was struggling with a similar kind of proprioception. Instead of being related to my body, however, mine is related to my inner self. I need to work on my own feelings (position), learn to take a stand (posture), find inner balance (equilibrium), and my self confidence (internal condition). I simply am affected too much by other people's opinions on how we raise our child. </span><br />
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<span class="owner " type="INSERT">I am not a black and white thinker so I'm always receptive to new information and new ideas. I value that I am like this but I find it difficult to emphatically state that "I know THE answer." I'm always amazed with people who feel they know the answer to things which seem unknowable such as religion, parenting, education, politics. My beliefs are fluid, are often reevaluated and, at the most, I have strong leanings. With the exception of a few basic concepts such as my belief that all are equal, that there is never an excuse for cruelty, and that diversity is a blessing, I rarely make absolute statements.</span><br />
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<span class="owner " type="INSERT">At this point, I have not found a school which we feel would work for our son. It is not uncommon for parents of children who are twice exception (2e - gifted and learning disabled) to shop around endlessly for a school which can handle their child's behavioral and sensory issues (for example) along with their being gifted. At this point, our school district has given us two options: the school where we have had very difficult issues with the principal or a special education class. Neither are appropriate. </span><br />
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<span class="owner " type="INSERT">When reading about the experiences of other parents with children on the spectrum who have decided to homeschool, I was touched by a quote from one mom:</span><br />
<span class="owner " type="INSERT"> </span><br />
<i>"When Jalen was going to school, it was like trying to pound a square peg into a round hole. There really wasn’t anything in the system appropriate or healthy for him. Leaving him there while I tried to fight for what he needed seemed counterproductive to me. We just didn’t have time for that — he was fast on the way to developing mental health issues on top of his other problems because of school. It was healthier for him and me to leave it behind." <span class="owner " type="INSERT"> </span></i><br />
<i><span class="owner " type="INSERT"><br />
</span></i><br />
<span class="owner " type="INSERT">I wanted to call out, "I hear you, sister!" when I read this. </span><br />
<span class="owner " type="INSERT"><br />
</span><br />
<span class="owner " type="INSERT">In my humble opinion, our educational system works for most children, those children in the middle of the bell curve as well as those on the outer edges but not for those who straddle both extremes such as my son. I can't say that there aren't some 2e students who have been fortunate enough to find a good educational setting but, it seems, that they are few and far between. At best, parents have to fight tooth and nail to get the correct services. My son's brief experience at school was so negative (they called the police on my 5 year old for having a typical autistic meltdown) that I'm not willing to give them a second chance. Not only did I disagree with their treatment of my son, I was saddened by how it adversely affected my son.</span><br />
<span class="owner " type="INSERT"><br />
</span><br />
<span class="owner " type="INSERT">Although I may be uncomfortable defending our decision to homeschool our son for the time being, I know deep down that we're making the right decision. As time goes on, we will reevaluate this decision, we will continue to view other schools and classes and we will make any changes which we feel are necessary and in his best interest. Institutions such as schools are important for society - for most of society. Education, however, regardless of what form it is in, is important for all and if an institution cannot provide the right environment, then it is our duty to find the best possible way whether it is controversial or not.</span><br />
<span class="owner " type="INSERT"><br />
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<span class="owner " type="INSERT">As for my own proprioception-like issues, I am comfortable with my feelings (position), I'm working on taking a stand as much as I can (position), I'm aware of my need for inner balance (equilibrium) and I'm building my self confidence (internal condition). I may not have an occupational therapist but, thankfully, I do have my husband, my family and my friends to help me regain my inner strength. Although I'm used to having controversial beliefs and ideas, my belief that my son deserves to be educated appropriately (in whatever setting) is the most important one for which I am willing and prepared to fight.</span><br />
<span class="owner " type="INSERT"><br />
</span><br />
<span class="owner " type="INSERT"><br />
</span>Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-90147713105548956912010-09-22T21:06:00.000-07:002010-09-22T21:06:59.433-07:00Endless questI can sympathize with people who are on endless quests for youth, beauty, immortality and other seemingly ungraspable dreams. The pursuit can be all consuming. Searching for the next best thing to get you there - wherever there might be.<br />
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Thankfully, I'm relatively ok with my age and some would even say I'm young (all those older than 37 years old but certainly not those younger than that). Beauty? Well, what is it anyway really? Even the beautiful have ugly days and the less attractive have beautiful days. Why make my life harder by worrying about how I look to other people? Granted, I want to be decent and would not enjoy being repulsive but, other than that, who cares? As for immortality, eh. I'm here now. I'll be here until I'm not. Pure and simple.<br />
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Thankfully, I'm not in pursuit of those dreams. Instead, I'm in pursuit of the next best thing which will make our lives easier. I can remember when this pursuit began: when my first son was born. Since then we have sought the help of a huge variety of professionals: lactation specialists, psychologists, neurologists, psychiatrists, occupational therapists, autism tutors, and so forth. This is not including all the specialists for the twins. I won't bore you with the additional details.<br />
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In addition to the professionals, we have read a billion books with the answer. THE ANSWER. I don't know how many times that I have read about a book and rushed to amazon to buy it because it gave me comfort to know that this new book would make something better. Something. <br />
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From the days before my oldest son's diagnosis, I was already going down the correct path to helping him by creating schedules of the day - I noticed he did much better if he knew what his day was going to be like. I spent countless hours creating schedules that not only contained an accurate picture of his day but made it fun and colorful so he'd enjoy it - until he didn't anymore and I had to create a different one. Every time I made one, I just knew that this schedule would make everything run smoothly. I have a library of these schedules, signs, and systems we've used over the years because I can't seem to get rid of them. Interestingly, my son feels great nostalgia for them and occasionally finds them in their new hidden spot and drags them out to look at them.<br />
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For a person who really believes in the value of simplicity and in not indulging children in order not to create an unrealistic sense of entitlement, we have an incredibly huge amount of toys. Toys for rewards, toys that teach, toys which help certain muscle function, toys which help with stimming and so forth. I find myself driven to go to a store to get the next thing that will reward my child (the oldest mostly at this point but the youngest as well). Although we have slowed down on this aspect of the pursuit, it's still there occasionally. It's hard not to feel the need to find something to make your child happy, to help them grow when their life is filled with such stress and difficulty. We're slowly trying to find a balance between indulgence and positive facilitation of growth. I've also found that it also helps to hide the catalogs.<br />
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Our latest focus is on education. What is best for our son? (The youngest is in preschool and is doing well.) Is it more important for him to be in a school setting in order to learn to basically do what he doesn't want to do for 3 hours or is it more important for him to learn naturally and at his level? (He is gifted which makes things very difficult because his behavior issues are that of an autistic child but his intellect is advanced for his age.) Today, I visited our school district's best option for my son at this point. Although I was impressed with the professionalism of the teacher and could tell that they would likely be able to help my son with his behavior, they were seriously behind my son's academic capabilities. How can I reconcile that? At this point, I feel I have to give homeschooling a good try before I have him placed in what is essentially a special education class. <br />
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It's difficult not to stress over the right thing. There are no real answers because no one can tell the future. I have to take a step back and focus on our goals and to consider what is ultimately important. So much of a person's success is driven by their inner foundation, how they feel about themselves, how secure they are. Putting my child in a class that is below him academically so that he can try to sit still for 3 hours is probably not going to do that for him. I think I can help him with his behaviors with the help of trained professionals while subsequently teaching him at a level more appropriate for his intellect. I'm hopeful that this will help provide him with that solid foundation and, perhaps, in the future he can return to a school but only if they see him for what he truly is which is a very bright, young boy.<br />
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For now, our pursuit for making things better is focused on education but it is also focused on socialization (via social skills classes), occupational therapy, and several other avenues for improvement. Some things may not prove to be effective in the long run but I doubt that we'll ever stop searching for "the" thing which will make life just a little bit easier for all of us. Of course, if it comes right down to it, like beauty, youth and all those other pursuits, I need to balance our pursuit for "better" with a healthy acceptance of where we are and to remember that what matters most for all our children is that they know that they are loved for exactly who they are right now.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-30194513424583707022010-09-20T21:49:00.000-07:002010-09-20T21:49:18.310-07:00ClarityHere is where I am. Here is where my life has led. There have been many times in the last few years when I wasn't happy with how my life had turned out. I was confused, frustrated, angry, hopeless and depressed. There were occasions when these dark periods would last for days and weeks which would be followed by a more peaceful and positive outlook. Struggling with where our life had led us and our children, I was mired in grief that was disguised with emotions which I could process more easily. As the dust is settling and our understanding of autism has ripened, I'm finding that the dark days are more manageable, predictable, and less frequent. When clouds of uncertainty, fear, anger, exhaustion cast their shadows on my mind, I at least recognize it as temporary and deal with it as best as I can.<br />
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There will always be dark days. There will always be times when I will be crushed with emotion. The difference is I accept that and I won't let it stop me.<br />
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Although autism is incredibly challenging in its various manifestations, it is incredibly beautiful as well. My children, autistic or neurotypical (NT), are all precious to me. I am fortunate that my children are capable of affection and of speaking and I try to soak that up. My heart is filled with love when I think of kissing each of my babies, of holding them, looking at their little hands and feet, seeing their eyes light up with delight. I am rich.<br />
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Recently, fate has offered me clear directions as to which way my life should go. My gut has guided me and I have listened. I have recently begun homeschooling my oldest child and, as much as I never thought I'd homeschool my children, I'm pleased about how right this feels. I feel that my life may have led me to this moment and it gives me peace.<br />
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I was raised in a home where the love of learning was ever present. Even as a fickle, young girl whose attention was often elsewhere (on boys), I was influenced by my parents' constant encouragement to seek more knowledge about any of our interests. A frequent joke in my family was, "we have a book on that." Our family library was relatively small but seemed to contain an almost magical amount of information. Although I wasn't always interested in committing my attention to all the information available to me, I was strongly influenced by my parents to be curious and to seek answers to questions I had. As a result, I have always loved to teach because it's such a fun experience to share knowledge about our fascinating world.<br />
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Now, I have children who love to learn in ways that I never did as a child and, frankly, I'm addicted with teaching them. After events made it very clear to me that my oldest is not ready for "school", I have reanalyzed what teaching and learning is all about and what going to a school really is for any child. Although I'm a big believer in a school setting for most children (my other children are in public school now), I'm also a big believer in not trying to force a child into something that clearly does not fit. Until I find a school which can address his autism and his giftedness, I will direct his education from home in a manner which doesn't teach him that there is something wrong with him and will instead allow him to blossom.<br />
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As I ponder my journey over the last year as well as where my entire life has led me thus far, I'm energized and determined. Things may be rough at times but my path is clear to me and I look forward to giving all my children an exciting and enticing learning environment similar to the one in which I was raised.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-68003891266331492242010-08-21T20:33:00.000-07:002010-08-21T20:33:31.628-07:00To all the friends I called beforeWe had friends. We had quite a few friends actually. It wasn't uncommon for us to have parties at our house. We'd often spend a ridiculous amount of money on food and beer just to enjoy our friends in our home, together. My husband and I met through friends and our friends were an integral part of our early days as a couple and, later, as a married couple.<br />
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Then life happened. First, it was infertility which turned us inward. Then it was our first child, a move to the suburbs, and followed by twins. Our world of seemingly carefree, fun times was over and we struggled to get through each day and to make it until the next pay day. We couldn't afford to have parties or babysitters. The stress of raising an undiagnosed child with autism while caring for newborn twins made us turn even more inward. To get out with the kids opened us up to stress (since we were incapacitated by our oldest son's unusual responses to the world) and for us to take turns going out alone only put more stress on the one who stayed home with the kids. There was no way to balance our role as parents and our desire to enjoy our friends. <br />
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Then we moved out of state from Texas to Utah. Since, by the time we moved, we rarely saw our friends while in Texas, the move to Utah only created a physical distance from our friends. Thanks to social networking sites, we can keep a tab on many of our friends and have been fortunate to maintain our connection but the days of chilling together while drinking good beer, talking/debating about music and idle chit chat are over. <br />
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I miss those days. I miss my friends. I feel I owe them an explanation for our distance but I'm not sure where I would begin. I guess I would want them to all know that we do love them and we cherish our time together. We will continue to try to keep up with their lives via Facebook and other means but we will likely continue to suck at emailing, calling or anything more personal than saying we "Like" their status or, occasionally, writing a brief comment on their status. I wish we could do more.<br />
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Another sort of distance that has been inevitable although less apparent is that of how our world's are so different. I'm sure for many of my friends I appear obsessed with autism. Facebook status after another regularly include the "a" word. I agree that I am obsessed. It is such a huge part of my life these days that I feel I'm often swimming in it. With two children on the spectrum, we are affected by autism the moment we wake up until our last child falls asleep (and then that's when I do research that I couldn't do on autism while they were awake!) Although I try not to make all my FB statuses about autism, I'd be lying if I didn't admit that it is what is on my mind. <br />
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For those not living with autism, my statuses must seem dreary, redundant and even boring. I understand. Prior to having autistic children, autism was a mild curiosity to me. Now that my children are affected (positively and negatively) by it, my heart and soul can't help but jump in and attempt to understand it for each child's sake and for our family as a whole. This is my life's calling. My darling babies who call me "Mommy" and rely on me to make their world a safe, accepting and loving place need me to focus on autism - not just because of its challenges but because I want to help their beautiful souls to thrive and to share their uniqueness with the world. <br />
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There may be a time when I can chill out, when I can shift my focus to other things. For now, though, less than a year after my oldest's diagnosis and only a week since our youngest's, it's my duty.to persevere. For all my dear friends who may ponder how much I have changed, one thing I would want them to know is that my love for them hasn't faltered. I just have a job to do which requires every ounce of my energy and, unfortunately, I am incapable of being the kind of friend I would want to be. Hopefully, one day, our friendships will get re-energized and renewed. Until then, though, I wish only the best for all my compadres, and I want them to know that I think of them all often.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com1tag:blogger.com,1999:blog-5587119267616127908.post-1310798765005185292010-08-10T20:49:00.000-07:002010-08-10T20:49:55.024-07:00Margaritas and manicuresYesterday, I gave myself an assignment which I nearly failed. It had been another stressful day made more difficult by my youngest having a cold. There were moments where I felt like my head would explode such as when my youngest repeatedly insisted that I pick a new show for him to watch. When I'd ask what he wanted, he'd say, "the one I want." I'd try it a different way, "Tell me the name of the show you want to watch." He'd reply, more agitated now, "the one I want to watch." I'd then pick a random show and he'd flip out because it wasn't the show he wanted to watch - the one I was supposed to already know. (For those less familiar with autism, this is a good example of his lack of theory of mind. He does not understand that I am not thinking what he is thinking.)<br />
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By the time my husband came home, I was mumbling incoherently to myself - at least that's how it seemed. I grabbed my gym bag and made a run for it. I took out some of my frustrations and stress on the equipment, focusing my negative energy on each rep, "1, 2" as my feelings of frustration and hopelessness turned to anger and sadness and, finally, to kinetic force. After releasing a lot of the stress, I rested in the spa and then the sauna. Feeling cleansed so to speak, I left the gym with time that I could use for whatever means I desired (a whole hour before I had to return home!) In an effort to help me nurture myself (and thus to help me through the grief I am feeling about my youngest son's recent diagnosis), I challenged myself to do something totally stupid and selfish: I had to go and buy something girly. <br />
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I went into the store considering buying new lipstick and came out with a french manicure set. Go figure. Of course, it took me ages to pace back and forth down the makeup aisle to determine what was the most cost effective yet desirable thing to purchase. For those who know me, I'm not a major girly girl. Since I have had children, I am even less of one due to lack of time, energy and funds. Doing my nails is such a luxury (paying someone else to do them is a luxury which I can't afford) that it made me giggle. It's so frivolous compared to what my energy is normally directed toward that I felt almost silly.<br />
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I wasn't done yet though. I had also decided that I wanted a margarita. Having grown up in Texas, I am quite fond of good margaritas. I know margaritas are available nationwide but they still remind me of home. Before I could talk myself out of it, I ran in the state liquor store and grabbed myself a mix. It would have to do and it did.<br />
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After having released my stress at the gym and entertaining myself with an almost childish desire to play dress up, I sat back and watched a very entertaining show with my husband. The two of us giggled like kids while I sipped at my frozen margarita while occasionally admiring my new nails. It was a mini-vacation and we have to remember to go on them as often as we can. Of course, my youngest did show up during the second show but, with my patience and compassion restored, I welcomed him into my arms and held him as he slept peacefully.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com2tag:blogger.com,1999:blog-5587119267616127908.post-70424699542552281272010-08-08T21:03:00.000-07:002010-08-08T21:03:46.076-07:00Spectrum of emotionsLittle did I know that when I first started this blog that one of my twin boys would later be diagnosed with autism. Ten months after my firstborn child's diagnosis, we find ourselves again trying to process the wide range of emotions that such a diagnosis brings about. From denial and skepticism to relief and mourning, my husband and I each are experiencing emotions and not necessarily the same ones at the same time. Unlike when our first son was diagnosed, though, we feel a little more equipped to handle it and have a better idea what we're facing.<br />
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As I have stated in previous posts, we have had our concerns. As more proof to the concept that "if you know one child with autism, you know one child with autism," our sons have different presentations of the same condition. I am truly better able to appreciate that autism is just a part of who my children are and not their entirety and that their form of autism is just as unique as they are as individuals. Despite their differences, though, my boys' distress and frustrations and our struggle as parents to help them is the same. When we found ourselves grappling at trying to understand our third son, we began to recognize the same emotions, concerns and frustrations we had had with our firstborn child prior to his diagnosis. Our instincts told us that there was something similar going on with our third child and that we owed it to him and to our family to see if there was any merit to our feelings.<br />
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Heading into the evaluation, I found myself preparing for it by writing up a document of all of our concerns. I also made sure to clearly spell out all his behaviors which were contradictory to an autism diagnosis. Perhaps I was secretly hoping that the fact, for instance, that my son makes good eye contact would rule out autism. I'll admit that I was hoping they'd say he just had OCD or an anxiety disorder. Of course, even though the diagnosis is helpful (so that we may be able to help him better), my son is who he is regardless of his neurology. He is still my little, darling boy who delights me with his funny, energetic and mischievous, little self.<br />
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As a family, we are now shifting from the idea of having one child with autism and two neurotypical (NT) children to 2 children with autism and one NT child. Of course, now that our third has been diagnosed, I can't help but wonder if we should have our 2nd son evaluated but I seriously can't go there right now in my mind because that is just too much for me to handle. Additionally, at this stage, we have not had the same concerns with our 2nd son that we have had with our other boys. I can't help but worry about our NT son and how having two brothers on the spectrum will affect him. Thankfully, the boys all love each other despite their frequent battles and, despite the difficulties, his brothers are hysterical and will enrich his life as much or more than they will challenge him. Certainly, we have to make sure all of our boys know that they are each special and valued and that, autism or not, our boys have an equal place in our hearts.<br />
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Tonight, I sang my third son to sleep because he needed me to "teach him how to close his eyes" and to "make sure the tears don't get on his face". One of many requests that he feels that only I, his mother, can fulfill. Sitting near his bed, I kept my eyes open so his could close and I sang to my sweet, little boy as he slowly fell asleep. Helping a scared child to go to sleep is certainly not unique to any parent and I'm reassured that I can do such things for him and to help him feel safe, loved and at peace with the world.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0tag:blogger.com,1999:blog-5587119267616127908.post-82708234140645007442010-07-23T21:48:00.000-07:002010-07-23T21:48:39.706-07:00ShiftRecently, I was discussing burn out with my therapist. When asked to describe it, the word that came to mind was complacent. For years now we have been struggling to potty train my son who is now 5 1/2. I have spent countless hours meeting with his psychologist, creating and following strategies and working with my son. With the exception of a short period of relative success, my son is not trained. <br />
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It is devastating to me. My handsome, brilliant son seems so disconnected from his body that he can't seem to process the information his body sends him and, therefore, he seems unaware that he has had an accident. If I hadn't been able to successfully potty train his brothers, I'd feel completely inept. As it stands, I feel only inept when it comes to him. It's hard not to feel that I should be able to do this, to figure this out. I have to. If I don't, his future will be so greatly limited and I can't stand to let that happen. Despite these strong feelings, I find myself feeling completely helpless and I almost give up.<br />
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When discussing these feelings with my therapist, she suggested that I consider my complacence more as an acceptance of my son's disability. Whew. Despite all the hours of working with my son, despite all the appointments with psychologists, it was clear to me at that moment that I was afraid to fully accept my son's disability as it stands at this moment because that would mean I'd have to face it. I have to let down my protective shield of denial and see his condition for what it is. I have to accept that he may never be trained or that it may take years and years and years. I simply don't know and the experts don't know either.<br />
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It's so hard not to be frustrated with him and to try to explain why he needs to use the bathroom. He simply isn't there yet and I have yet to find the solution that will get him there. I have to acknowledge that I'm not in control here and my son needs me to accept him exactly as he is. He needs compassion, understanding and an open mind to help him - not just reward systems, rules and consequences. I need to expel my negative feelings and find compassion and to listen, truly listen to him, in order to help him. I also have to prepare myself for the possibility that he may never be trained even though I find that even too hard to type much less feel. I simply can't give up but I have to stay in the present with him. Hopefully, with a calmer, more peaceful mind, I will find a solution that will help him or I simply have to wait until he is truly ready. Either way, I'm working on feeling less complacent and beaten by shifting my focus on finding peace with my son's disability as it is today.Cannonhttp://www.blogger.com/profile/11736101803570632495noreply@blogger.com0