tag:blogger.com,1999:blog-83864406727903223422024-03-14T00:54:21.966-07:00showerheads and hairdryerssharing joy and other stuff about a boy with septo-optic dysplasia and autism.Unknownnoreply@blogger.comBlogger131125tag:blogger.com,1999:blog-8386440672790322342.post-50459135455084217542024-02-03T14:27:00.000-08:002024-02-03T14:45:14.582-08:00Work is Good<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgURTBfOIUwut3LtBkR1g2nusb3ri2r_5eTJTHMt9G-IytCzOJkg3Z0KT_ynr5b7xHCyADRtKVBmO-PyFnPkvD5m10T3js7OMvtXZMiK52hKVXR5GiPvH6Rj9aL-w5RuU-MV-u3MQ-WY1RgoAtU2GLDKQc_eysUFxTQB27Z1VLhq8hImCmNQ-NpUmmIY8E/s8064/IMG_9196.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="8064" data-original-width="6048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgURTBfOIUwut3LtBkR1g2nusb3ri2r_5eTJTHMt9G-IytCzOJkg3Z0KT_ynr5b7xHCyADRtKVBmO-PyFnPkvD5m10T3js7OMvtXZMiK52hKVXR5GiPvH6Rj9aL-w5RuU-MV-u3MQ-WY1RgoAtU2GLDKQc_eysUFxTQB27Z1VLhq8hImCmNQ-NpUmmIY8E/s320/IMG_9196.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkZh7v4Hlgpm6mFZqNX1WDrL19SQViCIc0jTX9fTuQOdrQQ2hv4pOD_z0vseoY0yWwM-plfztICLxxoJjZ39d7pEEsqiQsacrRjzh8-K4JU54-IJDkvcNxiaU9Y1Gb8T5vdNfl4DvWKfPfUtOdm5i0CdETG2OGiJjYZgYsFc5_DRWd0AOTKzTJnI4Aso/s8064/IMG_9195.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="8064" data-original-width="6048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkZh7v4Hlgpm6mFZqNX1WDrL19SQViCIc0jTX9fTuQOdrQQ2hv4pOD_z0vseoY0yWwM-plfztICLxxoJjZ39d7pEEsqiQsacrRjzh8-K4JU54-IJDkvcNxiaU9Y1Gb8T5vdNfl4DvWKfPfUtOdm5i0CdETG2OGiJjYZgYsFc5_DRWd0AOTKzTJnI4Aso/s320/IMG_9195.jpeg" width="240" /></a></div><div><br /></div>The other day Josh's dad had left a basket of clean clothes in Josh's room for him to fold and put away later. When Josh woke up, he saw the basket and was very, very, very motivated to complete that chore. He said, "Wanna put the clothes away" over and over again. Unfortunately, the bus was coming in 20 minutes so we did not have time to do anything other than to get dressed, brush teeth and eat some quick breakfast before he headed to school. Still, Josh is not Mr. "aware of the time" and he was extremely perseverating on getting this task done. I had almost gotten him to the kitchen when he slipped past me back to his room where he dumped the basket of clothes onto his bed to start working on them. I had to fight him pretty hard to keep him from folding all his clothes and putting them away right then and there. Ok, yes, I had to promise to include a cookie with his breakfast but I was finally able to redirect.<p></p><p>So how many of you parents out there have to fight your young adults to NOT do their chores? </p><p>Josh doesn't always want to do chores but it's a big part of what he is learning to do in his life. I'm extremely proud of how much Josh has grown in his ability to do work. As a part of his post-secondary education, Josh has been volunteering at Molly Stones (a little boutique grocery store in town), Ace Hardware and the Veteran's Administration. At those places, he puts items on shelves, he breaks down boxes, he wipes tables and he makes coffee for people. I never tire of hearing about the new skills that he is gaining with the help of his dedicated team of vocational education aides and teachers. </p><p>It's not an easy thing to figure out how to help a kid like Josh to learn a new task. One teacher make a whole binder full of photos breaking down each part of the process of making coffee into really simple steps which Josh can understand and practice again and again. Apparently, on Wednesday mornings, Josh walks around campus taking drink orders from various staff members, making those drinks and then delivering them. He charges $2 for each beverage. He carries around a clipboard where people attach their money. This is incredible to me. </p><p>With help and repetition, Josh is learning how to work. He is contributing to his various communities in his own Joshy sort of ways. I am struck by what a tremendous gift it is to be able to work. Without it, Josh is relegated to a life of just being entertained or being bored. How easy it is to think that Josh is someone who just needs to be taken care of. How tempting it is to allow Josh to live a life where he doesn't have to do anything to contribute. But Josh is being given the gift of being able to work, albeit in simple, modified ways. </p><p>Working, contributing and producing are part of what makes human life meaningful and happy. The biblical picture of the Garden of Eden had work in it; good, productive work. Genesis 2:15 states that "The Lord God took the man and put him in the Garden of Eden to work it and take care of it." It was only after the fall in the story of Genesis that things like inequality, greed, competition, poverty, futility, and forced labor came about. </p><p>In our society, work is too often associated with our worth, our identity and the security of making money. Josh is free from those things. Josh is never going to be a biomedical engineer or a clinical therapist but he is going to help keep places clean, running and organized. He likes completing tasks. He brings caffeine into people's lives. That's pretty good. I'm so grateful for all of the people who have worked so hard to help to bring independent living skills and vocational education into my son's life. </p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-21740554722911576432023-11-24T00:09:00.000-08:002024-01-09T12:19:34.095-08:00Thanksgiving Ham<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60sY0jWhTvtgF-n_KfSvFaQ7LG1D2zuXYbJehXZfHDNfVVBjDKHh43sVHcHz9H_l5wY4lTEumwmunsg8rkECTfaTTO3VOwFyei1q_98mGyMZvXLDx1nbC0a9SFjC9daiBGxj5VlWwI5o_Un-cDv8sk8YXkwjsV3gbqAW3YkuB4olrzuDlEo5VREMKATQ/s265/images.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="265" data-original-width="190" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60sY0jWhTvtgF-n_KfSvFaQ7LG1D2zuXYbJehXZfHDNfVVBjDKHh43sVHcHz9H_l5wY4lTEumwmunsg8rkECTfaTTO3VOwFyei1q_98mGyMZvXLDx1nbC0a9SFjC9daiBGxj5VlWwI5o_Un-cDv8sk8YXkwjsV3gbqAW3YkuB4olrzuDlEo5VREMKATQ/w219-h265/images.jpg" width="219" /></a></div><p>Sometimes I just hate myself. </p><p>Generally, I don't have time to wade around in my insecurities. I have three children, a dog and a congregation full of people to lead and care for. I'm 55 years old and have had plenty of time for God to help me to get over myself. I've come to accept that I am not a compilation of accomplishments, abilities and actions. I'm a person who has been profoundly shaped and transformed by the grace that I have found through Jesus Christ. </p><p>But then I have a day like today and I just have a jag of DESPISING my weaknesses, my peccadillos, the stupid things that I have a tendency to do. Today is Thanksgiving and I feel like I had almost ruined it. I have roasted at least 40-50 turkeys in my life. It's not a big deal. I can totally do it; just pick a recipe and make it happen. </p><p>The New York Times Cooking recipe said to roast the dry brined turkey for 30 minutes at the unusually high temperature of 450 degrees. I'm guessing that the purpose of this is to do something like a sear to lock the juices in. Then I was instructed to turn the temperature to 350 degrees for the remainder of the time. It really was an elegantly simple recipe, something that an experienced cook, such as myself, could do quite easily while managing teen aged sous chefs, a hungry special needs young adult who kept emerging from his room demanding food and various side dishes. </p><p>The problem was that when I turned the temperature on my oven down to 350 degrees, I had forgotten to push START! What that meant was that, after having been cooked for 30 minutes, my turkey had been hanging out in a slowly cooling oven for the next two hours. By the time I checked on it, an hour before we were supposed to eat, I opened the oven door to a very comfortably cool oven. The turkey might as well have smiled and greeted me with a hello for how uncooked it was.</p><p>This catastrophe, combined with the realization that I had forgotten to pick up a splurged order of various breads and baked goods at a local bakery until it was too late, drove me to my room to lay on my bed with the door closed, taking deep breaths. I hate that I am a forgetter. . . and a non-detail oriented person. </p><p>One time, I was in charge of travel to a family cruise in Florida and I scheduled our return flights to be for the day <b>before</b> the cruise returned to port. In college, I would schedule things so that I needed to be in three places at the same time. This lack of organization is the thing that I am most tempted to judge about myself. </p><p>Granted, I've come far from those organizationally out of control young adult days. The years of being a full time mom of an incredibly medically and developmentally complicated child certainly gave me organizational and detail management muscles that I never dreamed that I would have. I am also a pastor of a church where, together with a multi-talented team of staff members, we function pretty well as an intergenerational, multiethnic community of around 300 people who need to turn a middle school into a place of worship every Sunday.</p><p>But every once in a while, I still make mistakes out of my lack of detail orientation and organization especially when I am tired. No matter how much I've grown and matured, I can't seem to escape this part of my personality.</p><p>Two things helped me to pull out of the vortex of self-chastisement. The first is my amazing husband who did not share my hypercritical attitude. He just told me that he loved me and drove to KFC and to the bakery to see if he could help save our dinner. (KFC was out of chicken and the bakery was all closed up.). Just as he came home, I realized that I had also purchased a small ham to serve at a later gathering. I threw that into the oven to heat and serve with our stuffing, potatoes and veggies. Fortunately, Thanksgiving dinner this year was just my nuclear family and my mother so it wasn't a huge deal. The ham was barely warmed and rather boring but it was fine. </p><p>In fact, the second thing that served to give me perspective and stop being so disappointed with myself was how much Josh loved the ham. My son LOVED the ham. He asked for more over and over again. In fact, at one point, while I got up to get more from the kitchen, he grabbed a slice right off of his grandmother's plate. My mom reflexes are still pretty fast so I grabbed it right off his plate before he could eat it and made him wait for his own piece acquired in a proper manner. </p><p>At the end of this day, I am choosing to think not about what I did wrong or what didn't go well but about the things that I am grateful for. The six of us were able to sit together for a nice meal. We enjoyed the food, especially Josh. My 83 year old mother was able to spend quality time with us. We played a little game which had us ask each other interesting questions. We laughed together about funny stories from our pasts. </p><p>As much as I am a foodie, I have to remember that the food is not the point. The most important part of any feast is the spirit, the love, the people and what or who you are celebrating. I hope that I am able to keep this on the forefront of my brain as we enter into another season of food and celebrating. </p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-22897628630931770822023-09-18T16:30:00.004-07:002023-09-20T10:56:29.588-07:0021<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaXRYFynjPjBC2Obj5SFRD9T39n-U1hCcUfnj8G4PC8njkzzyXLNo8LbSvIHpZVajLITc98WbWumi3QCgnSFocIXjnDZp--ijnIQ4by9NowT4296Hc1oq4GpoTHe49nJlP8wL0S6eSADctdEfw_MhS2x8gmqw7Mi-A3JE-9lFG5nAvJqam_6Tpht3mplY/s3641/IMG_4118.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2677" data-original-width="3641" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaXRYFynjPjBC2Obj5SFRD9T39n-U1hCcUfnj8G4PC8njkzzyXLNo8LbSvIHpZVajLITc98WbWumi3QCgnSFocIXjnDZp--ijnIQ4by9NowT4296Hc1oq4GpoTHe49nJlP8wL0S6eSADctdEfw_MhS2x8gmqw7Mi-A3JE-9lFG5nAvJqam_6Tpht3mplY/s320/IMG_4118.jpeg" width="320" /></a></div><p>Last month Josh turned 21 to very little fanfare. We had a family dinner with my mother and my sister's family. Josh and his dad shared a birthday cake as is our custom since their birthdays are 8 days apart in August. </p><p>It's strange to think that if he were a typically developing young man, he might be attending college or be in the military. He would probably be driving and figuring out his relationship with alcohol. He would be able to vote, gamble and earn a pilot's license. Heck, in this country, he could even get a concealed weapon license (!) or adopt a child (!)</p><p>But most of those things are out of reach for my son and probably will be for his whole life. Instead, Josh is diligently working on his tasks at his job at the Veterans Administration building such as breaking down cardboard boxes, wiping down tables and filling up salt and pepper shakers. He enjoys his routine of going to his class at our school districts post-secondary classroom and doing his daily neighborhood walk. We are still working on chores such as emptying the dishwasher and putting his clean laundry away. </p><p>Josh has a simple, small life but, I hope, a very good one. He has people who know him and love him. There are people who are helping him to learn new things. He is a part of several communities in ways that are meaningful to him. He enjoys different parts of God's creation such as water, the wind, music and many different types of foods. He cries sometimes, yells sometimes, and laughs a lot. </p><p>Josh is not like most 21 year olds but he is living a life full of his own kind of meaning and blessing. I'm so proud of how far he has come and I am confident that he will continue to grow as he walks further into his young adulthood. </p><p><br /></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-37682779043477857572023-07-03T18:48:00.004-07:002023-07-04T19:45:24.708-07:00Smelling Mama's Hair<div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibDEkaI67vbABio1oWlqrDsBYK_hp-45jL1NCaXcv8GBeV2JmcGXPEr81PNzqR9uDKKrE-cO4C8zHJWs4YuQepzMWha3O7Jl0hBU7LeaTSDV1zEFbA5LF0xwp8YwnkeYXv9U4tZ5-kTa-66I-qqF6g_x4o1PRZU6CrzqKpqOKhjy4_rgPy-YqdvPD0GUc/s4032/IMG_0703.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibDEkaI67vbABio1oWlqrDsBYK_hp-45jL1NCaXcv8GBeV2JmcGXPEr81PNzqR9uDKKrE-cO4C8zHJWs4YuQepzMWha3O7Jl0hBU7LeaTSDV1zEFbA5LF0xwp8YwnkeYXv9U4tZ5-kTa-66I-qqF6g_x4o1PRZU6CrzqKpqOKhjy4_rgPy-YqdvPD0GUc/s320/IMG_0703.jpeg" width="240" /></a></div><br /><p>One of my son's obsessions is smelling my hair. For some reason or another, Josh LOVES to smell my hair. His favorite thing is to pull my head to his nose and take a good long inhale and then tap it gently with his hands. Then he usually laughs and smells again. </p><p>The other day Josh was walking toward his school bus in the morning. When he was about 5 feet from the bus he stopped, turned around and then came back to me, saying loudly enough for the bus driver to hear, "Wanna smell Mama's hair!" What could I do? It was easier to let the kid take quick sniff of my hair than to convince him to get on the bus without it. Maybe it gave confidence for the day. I don't know.</p><p>I wonder if his sense of smell is important to him because he's visually impaired. That's what they say, right? That if you have a sense that is underdeveloped or curtailed that you start to strengthen other senses. I do know that when Josh was young, he had an extremely sensitive sense of hearing. High pitched sounds like babies crying or certain sirens made him scream and cry and hold his ears. We also went through eras where we put him on a "sensory diet" with routines where I would "brush his arms and legs" and do certain kinds of squeezing on his arms and shoulders to help him to feel calm. Yeah, I guess raising Josh has been quite an education in how the senses work differently for some people. Sensory differences are, after all, a huge part of the autism experience. </p><p>But I really have no idea why he specifically loves smelling hair so much but I do know that he has always been especially drawn to long, black hair worn in ponytails like I often wear my hear. Years ago we were at a one of the girls' soccer games. Hope was playing and I was managing both Josh and Anna on the sidelines. Josh seemed happy in his folding chair with his headphones and ipod so I allowed myself to wander a little distance away to be with Anna. A few minutes later I looked up to check on Josh and saw that he had gotten up and was walking toward another Asian mom with a long, black ponytail. It was clear that hair sniffing was on his mind. In that moment, time slowed down like at the high point of an action movie. I found myself yelling "nooooooooooo, Jossssssssssshhhhhhh". I flew through the air almost sideways like in a John Woo movie (but without the guns) in a futile attempt to keep my son from grabbing this random mom's hair and smelling it. I can't remember if the lady was understanding or not. My memory ends there. </p><p>Thinking about that memory makes me realize that Josh has been into hair for a long time. And we've been trying to train Josh to ask before he grabs people's heads or hair. I realize that having a young man say to you "Wanna smell your hair please" isn't exactly normal young adult social interaction but it's better to teach him to ask for permission / consent first, am I right? </p><p>The other morning I was helping him to brush his teeth and wash his face. Standing behind him I put my face up to his head and smelled his hair. It smelled just the way I remember it smelling when he was a baby. It smelled like sweetness and connection and intimacy and memory. In the split second post sniff, I was filled with deep love. It reminded me of that time when I felt like I heard God say, "Would you raise this child for me?" And like the first time, I said, "Yes, it would be a privilege." </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGpmR_hLto75Tt-Q7max8hnBSzaxc0TnEpFGUTnM9g_dj2nkN7zn845wNk6ZLkikKzaRzXYad1JG9BKdD01PZgQTS7ijWWisvpO_Vcr95mVkEUtC4bddAL4kEeUSJjXnSxcGCaJWq2X27F8ffYsfi_HWfycn__LyczzhMsHgfPLyQ8M-atqFVtAjpJLk/s4032/IMG_3918.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGpmR_hLto75Tt-Q7max8hnBSzaxc0TnEpFGUTnM9g_dj2nkN7zn845wNk6ZLkikKzaRzXYad1JG9BKdD01PZgQTS7ijWWisvpO_Vcr95mVkEUtC4bddAL4kEeUSJjXnSxcGCaJWq2X27F8ffYsfi_HWfycn__LyczzhMsHgfPLyQ8M-atqFVtAjpJLk/s320/IMG_3918.jpeg" width="240" /></a></div><br /><p><br /></p><p> </p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-54544777249709742382022-03-31T09:58:00.011-07:002022-04-01T20:00:38.119-07:00Mother/Son Vacation<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhmkgLOE1kNMqv1Lhumgtja3b851TXZvN5mK9z6kMQUzlKHWPnlVaveVQcpNGDaJph89cZh0DKRdhdSnS9ixKbJPbQ8fRaRiE9oRyD0slh83QOaCpcTHHlgN2KnUZAhxAYjUALfkJDwRcnkgwedovrcoZmqnrvgTM6Rpk30hBVfWzxbhIfDA5j5BAED" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="4032" data-original-width="3024" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhmkgLOE1kNMqv1Lhumgtja3b851TXZvN5mK9z6kMQUzlKHWPnlVaveVQcpNGDaJph89cZh0DKRdhdSnS9ixKbJPbQ8fRaRiE9oRyD0slh83QOaCpcTHHlgN2KnUZAhxAYjUALfkJDwRcnkgwedovrcoZmqnrvgTM6Rpk30hBVfWzxbhIfDA5j5BAED" width="180" /></a></div><p></p><p>I said that we would just check it out, just take a quick look because by the time we had checked into the hotel and settled into our room, it was late afternoon and much too chilly to swim. It was even colder than the weather report predicted and I had only brought thin sweatshirts for each of us. But Josh kept saying, "Wanna go home" so I needed to put some more motivators on the table. I wanted him to be ok with this quick little mother/son trip that I had brought him on. So instead of going straight to the car to go get some dinner, we made a brief little side trip to just go look at the outdoor pool and hot tub area.</p><p>We rounded the corner and I used my key card to get us into the tiny fenced in area where the pool and little hot tub was. Josh took a good look around and, as he took it in, his visage completely changed, as if he was being greeted by a long lost friend. The silly-sweet smile that oozed across his face said, "I know what this is! This is something I like!"</p><p>When I told him that he could dip a toe into the hot tub, he flung off his Crocs off and plopped his foot into the bathtub-like water. I could tell by his body language that we weren't going to go straight to dinner. </p><p>"Wanna go in?" It was half question and half declaration. This kid wanted to go in the hot tub, cold windy weather be damned. He walked right in with his shorts and underwear on. I barely had time to take off his shirt and sweatshirt. Josh spent the next hour enjoying the hot tub. As he usually does when he's happy, he swing his arms around, sang little bits of songs, and exclaimed words which he made up like "Wash-weh!" and "stuck-tidit".</p><p>Well, this is why I decided to take three days and two nights away with Josh. This week is Josh's spring break but not his sisters'. Since I am on sabbatical, I somehow came up with the idea of having a mother/son getaway somewhere with a pool. I chose Salinas because I have been wanting to visit the National Steinbeck Museum which is there and it would be easy to find a decently priced hotel where Josh could swim and enjoy water.</p><p>On our second day here we partook in the free breakfast and made our way to the Steinbeck Museum. I had some amount of trepidation knowing that there was a wide spectrum of ways that this could turn out spanning from massive meltdown to going pretty ok. After all these years, I know that taking Josh out to public places is always a risk but it's a risk that I am willing to take now and then. Yes, there is always the chance that he will be walking along and suddenly decide to take a pee into a bush or suddenly get upset but I don't want Josh to live in his room all the time when he's not at school. And I don't want to feel like I can never do anything interesting just because I have Josh in my life. </p><p>The visit to the museum turned out to be surprisingly successful. Josh spent a good part of the time by himself in a small, fenced in outdoor area within the museum with his headphones, Ipod and his Magnadoodle. I would take in one or two exhibits and then walk back to check in on him. He was fine the whole time, sometimes taking a few moments to walk in circles and feel the breeze on his face. For the last 30 minutes, I made Josh walk through the exhibit room with me which he was less than thrilled about but was willing to do. </p><p></p><p></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhMtZCFJIQokV5syil_O3sAfLc5yb8eo_1vcgUnMiXBYlb04iKVAwl4HAFYK_kg_qJJccwSO8oswWvF5D5CFfIot8cMs1HkeLRCt4XWqeyBm78AwuJ0E2khoSxrCBXr5120jMtTiHhSOZw-jhhjgZ3jGZol1UD9diZnb8oB4V0D9a8qpGKXk0sx2OtL" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2651" data-original-width="2112" height="265" src="https://blogger.googleusercontent.com/img/a/AVvXsEhMtZCFJIQokV5syil_O3sAfLc5yb8eo_1vcgUnMiXBYlb04iKVAwl4HAFYK_kg_qJJccwSO8oswWvF5D5CFfIot8cMs1HkeLRCt4XWqeyBm78AwuJ0E2khoSxrCBXr5120jMtTiHhSOZw-jhhjgZ3jGZol1UD9diZnb8oB4V0D9a8qpGKXk0sx2OtL=w205-h265" width="205" /></a></div><br /></div><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi8GNBjVV7zBhq4U13Z7d4mgp3eA2dcrtooWbNUnc1xvAbYNc4O3eSjTmA8qi79ffFO8Y7hAaPNL0RPq3dt9IoUIRkTWUwWFgvbiHnhy1Iwl2OCPJFWbC29KBY1LEnLBKzKxk5uqAfvo-WKT5-jVpBwS_sYiRJK_Bfq7K4NP4Wwqw8Kz3EZanxpB-A8" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEi8GNBjVV7zBhq4U13Z7d4mgp3eA2dcrtooWbNUnc1xvAbYNc4O3eSjTmA8qi79ffFO8Y7hAaPNL0RPq3dt9IoUIRkTWUwWFgvbiHnhy1Iwl2OCPJFWbC29KBY1LEnLBKzKxk5uqAfvo-WKT5-jVpBwS_sYiRJK_Bfq7K4NP4Wwqw8Kz3EZanxpB-A8" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjwyw6MatkYMvME2tJS06gJ8C8ya-1y2S1mUgvJIixYxYhgVNo5b0BfX8_Wm-ScXFSWV2dou3heFB0fBBk8ShF01eBhxZGu4IWDh6THE4r1C3szwMIBHN3ctzWtB1EzJ2nF3wVS7tX-0UiNQqk2uXZEU1LSN8trYc69cPDXQNk1Qjjwh6Ub4zjN1YqJ" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjwyw6MatkYMvME2tJS06gJ8C8ya-1y2S1mUgvJIixYxYhgVNo5b0BfX8_Wm-ScXFSWV2dou3heFB0fBBk8ShF01eBhxZGu4IWDh6THE4r1C3szwMIBHN3ctzWtB1EzJ2nF3wVS7tX-0UiNQqk2uXZEU1LSN8trYc69cPDXQNk1Qjjwh6Ub4zjN1YqJ" width="320" /></a></div><br /><p></p><p>After lunch Josh and I went down to the pool area where Josh elected to go into the big pool this time and I need to tell you that Josh was happy THE WHOLE TIME! As parents, our children's joy catalyses our own joy. It's not the only thing that we want for them but when our kids are filled with happiness and contentment, it touches a deep, central part of our hearts. We want our kids to be able to enjoy the gifts that life (and we) give to them. We want them to be happy. </p><p>I find myself wondering if God feels this way about us. I wonder if God, as a heavenly parent, wants me to enjoy my life, the world, and each moment as much as Josh does. Does it give God joy when I savor some part of my day or a beautiful piece of writing or a perfect Korean meal? Does my smile make God smile? Is my laughter music to God's ears? If so, I am going to try to let myself enjoy the things that I enjoy more. I think of how freely and unselfconsciously Josh enjoys the pool and I will try to be like him. I hope that my joy, and my grateful enjoyment of God's good gifts to me, is as pleasing to God as Josh's joy is to me. </p><p></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiJTNwBXdcmLmOPQIHbzjeE0O3xCcD8ehIr9pa8_hnh_mZwWJBWTTLKmlKbsdBRkD-2TLLZQHDCJuTodBEEcxZyzwoZzuALf9M2rb6tDOxnH5UXFgF1xmd5pq7FgfsxZYU9jkktXCcEK2F5noabYmKalSO32D1vMa_um9dnUHbGfCAI8DF7lUmTgOT5" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2629" data-original-width="3627" height="232" src="https://blogger.googleusercontent.com/img/a/AVvXsEiJTNwBXdcmLmOPQIHbzjeE0O3xCcD8ehIr9pa8_hnh_mZwWJBWTTLKmlKbsdBRkD-2TLLZQHDCJuTodBEEcxZyzwoZzuALf9M2rb6tDOxnH5UXFgF1xmd5pq7FgfsxZYU9jkktXCcEK2F5noabYmKalSO32D1vMa_um9dnUHbGfCAI8DF7lUmTgOT5" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh4iKnuVUT0h14xyOwj5tzBAQr0h6dgHxjRK1jd42pqmi1DmOYN-kw2O9QvmN0TSFPmUlCVcZc00mMHbZnzSHoe2DyJc7DOZdHXj-6YTaCVOcidI-SgDbEotLHbO0JWquprU4KPFS-IVI53DlodPtYTs7lW3ibQXtDXjKMGC-luHnpANT_CR-52Rlo_" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2793" data-original-width="2599" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEh4iKnuVUT0h14xyOwj5tzBAQr0h6dgHxjRK1jd42pqmi1DmOYN-kw2O9QvmN0TSFPmUlCVcZc00mMHbZnzSHoe2DyJc7DOZdHXj-6YTaCVOcidI-SgDbEotLHbO0JWquprU4KPFS-IVI53DlodPtYTs7lW3ibQXtDXjKMGC-luHnpANT_CR-52Rlo_" width="223" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjg4j1oQQFZ1i5DpbuBrXmwst9Q2srbMWGWjho0vMhW3UXGXzrUsTLPRc9BF1waeR4HWB-P4tEOcTQQChhMiGtMCflkUo3STqL1d3zw5US2-J3Udu992nPtCMQDbL0y86whXeZv3zskmNJd_7nwgflJI93g6X7xW3AhnhV8p2iXRh_7ZSqCFRLOTuYT" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2849" data-original-width="2452" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjg4j1oQQFZ1i5DpbuBrXmwst9Q2srbMWGWjho0vMhW3UXGXzrUsTLPRc9BF1waeR4HWB-P4tEOcTQQChhMiGtMCflkUo3STqL1d3zw5US2-J3Udu992nPtCMQDbL0y86whXeZv3zskmNJd_7nwgflJI93g6X7xW3AhnhV8p2iXRh_7ZSqCFRLOTuYT" width="207" /></a></div></div><p></p><p>For nearly 4 hours I breathed in my son's sweet joy. He swam around, jumped up and down, flapped his arms, floated on his back and stood quietly in the water with his eyes closed and face to the sky. Every time I asked him if we should go back up to our hotel room he vehemently declared, "No!" Finally I had to bribe him to come out with a piece of chocolate that I found in my purse. We made our way upstairs to discover that Josh thought that the bathtub in our room was just the coolest. He took a bath for another hour and half. </p>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8386440672790322342.post-10402970763378803072022-02-27T15:29:00.006-08:002022-02-28T20:46:14.213-08:00Why Does This Woman Get to Influence My Son?<p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEg62W9F2gC8cfyrO-yOgKKPsWtoh-5zrtaA8-uDf5Tf-fgRZE6Js9iwTO0fgITSuWzReV12VABwSgwrPP-7w9B8tw53H2NGRjtcGob5bazQbOL-n7jwjnfph3ajNOlrnYcrtQ4nZ6QnKPVguKpA6seQgYLuuP2ssgPBKhzQw6DrZkrbqh4Gu30WriHq=s300" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="168" data-original-width="300" height="168" src="https://blogger.googleusercontent.com/img/a/AVvXsEg62W9F2gC8cfyrO-yOgKKPsWtoh-5zrtaA8-uDf5Tf-fgRZE6Js9iwTO0fgITSuWzReV12VABwSgwrPP-7w9B8tw53H2NGRjtcGob5bazQbOL-n7jwjnfph3ajNOlrnYcrtQ4nZ6QnKPVguKpA6seQgYLuuP2ssgPBKhzQw6DrZkrbqh4Gu30WriHq" width="300" /></a></div><p><br /></p><p>"I think it was from a song by Doja Cat." Josh's respite care provider hesitatingly let me know that their weekly trip to Trader Joe's did not go as smoothly as it usually did this week. Apparently, they had to wait outside for a while because Josh was repeatedly singing a phrase from a song which had a bad word in it, a word which he should not be singing indoors while grocery shopping on a busy Sunday afternoon.</p><p>"Oh no!" I said to her. "Was it the F-word?"</p><p>I had heard Josh saying something that sounded like the F-word the other day. You can't always tell because he pronounces certain words in odd ways. For example, one of his favorite words to say is 'vacuum'. Unfortunately, it usually sounds like 'f***-um'. So it can be tricky, you know?</p><p>"No, it was worse. It was the N-word."</p><p>My hands flew up to my face in distress. "What?! How does he know that word?" </p><p>Ariana, Josh's caregiver, is a young twenty something who listens to a wide range of music. Apparently she was familiar with the very song from which Josh was quoting or singing given the phrase which apparently was stuck in my sweet son's head. </p><p>"Why is this person saying the N-word in a song?!" I demanded, more than annoyed that such influence had reached my innocent boy. </p><p>"Mom." My 16 year old daughter had come out of her room to see what the commotion was all about. "She's black. She gets to use the word. And she's a rapper."</p><p>I could tell from her tone that my daughter kinda couldn't believe that I didn't know who Doja Cat was. (And I know who she is . . . I just didn't know that she was black or a rapper or, okay, really anything about her but I have heard that name before.)</p><p>But Hope was sympathetic to our conundrum. How do we help a kid like Josh to understand that there are things that you can't say out loud, even if you are happy, even if you are singing, and even if someone else says it, even if it's stuck in your head?</p><p>The thing is, Josh has no idea what a "bad word" is. He doesn't swear or curse or use profane words or images to express that he's angry or cool or sexy. He does not use words or sarcasm or gossip to hurt people. He does not know how to objectify his own or other people's bodies. He has no idea that the simple use of certain words said by certain people at certain times reminds the hearers about how language was one of the tools which were used to horrifically oppress an entire group of people in the history of this country and has echos even now.</p><p>He just picks up sounds and phrases and repeats them because they sound good to him. He's just as likely to repeat a phrase from Elmo or the Wiggles as Doja Cat or Kanye/Ye.</p><p>As sad as this is, today this reality brings me comfort because Josh's intellectual disability protects him from a having his heart be influenced by the profanity and the negative influence of certain words and phrases in the world around him. He is not going to learn to think about precious things like sex, our bodies, God, our promises flippantly. He doesn't know how to say one thing but mean or do another. He doesn't use words as a weapon. In this way, Josh is freer than some of the other teens that I know and love.</p><p>Now if I can only figure out how to keep him from using the N-word at Trader Joes. </p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-8301732116762944372021-10-02T19:37:00.000-07:002021-10-02T19:37:14.503-07:00Tethered<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZio-Wxw62Ehlp4qMUcZN0GURiC6zr1LAlPSrB2l3o-5lH1wQ5UxkGjdvgWemgYmmQ1LeJdeQbrmyi1aJ6zLtePwzsAF-whlas2yNOf1-6r9aJiU9Z6-WuCDcyh526HZwhPSxmPAxoGLU/s2048/IMG_0032.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZio-Wxw62Ehlp4qMUcZN0GURiC6zr1LAlPSrB2l3o-5lH1wQ5UxkGjdvgWemgYmmQ1LeJdeQbrmyi1aJ6zLtePwzsAF-whlas2yNOf1-6r9aJiU9Z6-WuCDcyh526HZwhPSxmPAxoGLU/s320/IMG_0032.JPG" width="320" /></a></div><br /><p>I've realized that there are some ways in which the isolation which came with the pandemic did not feel new to me because for the past 18 years we've been responsible for an eternal toddler who must be watched at all times else he get into all manner of trouble. This has not meant that we couldn't go out or see people or travel but it has meant that we do much less of these things than many of my friends and neighbors. My husband and I have been tethered by Josh's needs, sensitivities and limitations. </p><p>This photo is from a recent day when we left him alone in the bathroom for just a little too long. Someone had started him in the tub without putting everything away so Josh poured an extra large jug of Head and Shoulders into the tub and then pushed the jacuzzi jet button. I walked in to find most of the bathroom filled with a hip high layer of bubbles. </p><p>My first thought was "Oh my God. We can never leave him alone ever. I have to give up everything I ever wanted to do outside of this house. I will never have freedom and independence ever again." </p><p>Woah. </p><p>Where did that come from? After all, I have a full time job and an office that I can go to even during Covid. I have the partnership of a wonderful and capable spouse who is currently taking the lead role with Josh. I now even have two in-house teen aged babysitters who say that they will only charge us "half price" from their usual rates when they babysit other people's kids (actually, they don't really charge us but often insist that we Doordash them something). </p><p>I think that it's triggering for me when we have an incident like this because it exposes my fear; fear that Josh will never grow in independence, fear that something really bad will happen to Josh because we weren't watching him well enough, fear that we will not have a good future because of who Josh is. </p><p>It really is more about the fear of the future because the present is pretty ok. </p><p>What is the antidote for this kind of triggered fear? </p><p>First of all, breathing. Sit. Breathe. Wait. Keep breathing. Feel the fear. Breathe again. Wait some more.</p><p>Secondly, and this is way later after your actual body has calmed down, ask. Ask yourself what is going on. Ask God to help you. Ask your body, how it's doing. I think that slowed down asking is really good.</p><p>Finally, wait for grace. Seriously, grace usually comes when we ask and when we're open. That grace might be through peace or perspective or a memory or humor. The grace might come much, much later and it might be really tiny but my life experience tells me that grace does come. And when you see it or sense it, take it in. You need it. You were made for it. </p><p>I did this just now and the new perspective that I received was that I am tethered to Josh but through the lens of grace, I believe that it is a good thing. Messed up bathrooms can be cleaned but the love and transformation that comes from my relationship with my son will be forever. </p><p><br /></p><p><br /></p>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8386440672790322342.post-43596238474286550362021-02-15T17:30:00.006-08:002021-02-15T20:39:29.898-08:00Our Neighborhood Walk<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzaPcQBCjQl_6WCmgiptzydXELusQg_um4_btcyf77mRFx25sLZpzL8sXvozaAU2wdsZKmkmxLrik1yqsgAZzkgCRNRhu8ZgHnFW65SUnA0DpM5Mdz14RG6iwxDB4iTT8947BkQTjb1Aw/s2048/IMG_7536.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzaPcQBCjQl_6WCmgiptzydXELusQg_um4_btcyf77mRFx25sLZpzL8sXvozaAU2wdsZKmkmxLrik1yqsgAZzkgCRNRhu8ZgHnFW65SUnA0DpM5Mdz14RG6iwxDB4iTT8947BkQTjb1Aw/s320/IMG_7536.JPG" /></a></div><p style="text-align: center;"><br /></p><p>Almost every day since the the pandemic started a year ago, we have been managing being homebound by taking a walk around the neighborhood with Josh and our dog. On most days it's my husband, the dog and Josh. Sometimes the girls and I go along. Today, my sister's whole family and my mother came along, all of us masked and trying to walk with some amount of distance from one another. </p><p>Our neighborhood is generally quite nice with small to mid-sized homes, decently attended yards and old trees overhead. People express their friendliness by putting out boxes with extra fruit such as lemons or oranges for anyone to take. We pass three of those "Little Free Libraries" during the course of our walk. People are friendly in a "look at you and smile" kind of way not a "randomly start to talk to someone you don't know" kind of way. No one seems to be weirded out by Josh. </p><p>All in all the walk is about 1.1 miles or 6000 steps and takes between 20-30 minutes depending on how slowly Josh is walking. Josh takes his time, clapping as he goes. Sometimes he stops to enjoy the sun on his face or to look at a leaf and possibly taste it. He knows the way but he has to be watched lest he get stalled or decide to eat some inappropriate item. </p><p>It's always the same walk, down the same streets, on the same sidewalks, making turns at the same places. My husband and Josh take great comfort in the sameness of the walk. To me, for a while, it felt boring and a little mind-numbing. Why can't we ever explore other parts of the neighborhood? Must we always go the <u>exact</u> <u>same</u> <u>way</u>?</p><p>A therapist friend of mine recently told me that humans find great comfort in routine, especially during times of stress. This must be true about our walk especially to the more routine-loving members of our family. Josh is very committed to the exact pattern of our walk. If I try to walk on the side walk on the other side of the street from what he is used to or to cross the street in a slightly different way, he resists heartily. He feels very strongly that there is a way to do this walk and it's a very good way . . . not to be messed with.</p><p>One time, a mom was coming down the sidewalk toward us herding twin preschoolers each with their own scooters plus she had an infant in a carrier on her front. I could see even as she was further away that she was going to have a hard time moving to the other side of the street to avoid us. I tried to get Josh to go around them on the street and he wasn't having it. The more I insisted, the more Josh got upset and started screaming and hitting himself on the head. I apologized profusely as we had to pass each other, uncomfortably close given the county health guidelines of remaining 6 feet apart from people who are not in your household. She didn't say anything back to me, perhaps because her mask was in her hand, but her eyes told me that she understood and wasn't judging us. </p><p>Since that time, we got help from Josh's Orientation and Mobility (O & M) instructor at school to work on having Josh practice going around a parked car in the street every now and then to practice "giving way" on the side walk. At first Josh did it for goldfish crackers, then just for verbal praise. Now he can do it whenever we ask him to. Being flexible with his routine is not his favorite thing but he's gained some amount of elasticity over time. </p><p>I realized today how blessed we are to have our little walk. Having done it hundreds of times now, it feels like a comforting thing, a chance to notice simple pleasures like fresh air, trees, different flowers that bloom around the homes of our neighbors. We know which house is being sold and which one is doing some remodeling. We wonder where the little white dog has gone since we haven't seen him in his backyard for a while. This routine has made our neighborhood more "ours" and has given Josh a safe way to engage with it. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFzUUeo-ID9hr-B0wkQC_dslpgXa-Sr6Q0blwqdvzRoaOm8YTPUWHlbRYj3zplv51SmqzE9qllTgvn-gqWK92tuOEhkL-FYUtWIXhdMm-A613ivt8i0F8FWsPoJPuPC386etGm2UU4lQ/s2048/IMG_7246.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFzUUeo-ID9hr-B0wkQC_dslpgXa-Sr6Q0blwqdvzRoaOm8YTPUWHlbRYj3zplv51SmqzE9qllTgvn-gqWK92tuOEhkL-FYUtWIXhdMm-A613ivt8i0F8FWsPoJPuPC386etGm2UU4lQ/s320/IMG_7246.JPG" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic4RbPSqrUxeuNJuAm4KEGj_k20b-unftoWG0Deuyf_Fri-Bs_2H4zdrLziOtiFjpvgvqGAPxM-RT_3JTdy1a9DOoPHaD7KPfZVhUtcsiO5YzOOkUTRqVGumRylDU3BncM4rhfT6AnHrQ/s2048/IMG_7805.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic4RbPSqrUxeuNJuAm4KEGj_k20b-unftoWG0Deuyf_Fri-Bs_2H4zdrLziOtiFjpvgvqGAPxM-RT_3JTdy1a9DOoPHaD7KPfZVhUtcsiO5YzOOkUTRqVGumRylDU3BncM4rhfT6AnHrQ/s320/IMG_7805.JPG" /></a></div><br /><p style="text-align: center;"><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-65987468194917120042020-11-19T13:14:00.004-08:002020-11-19T14:41:27.188-08:00Adventures in COVID Testing<p>Headphones? Check.</p><p>Power Bars? Check.</p><p>Chocolates? Check.</p><p>I thought I was all set to take Josh to get a COVID test at a local community center. We are planning to go to a cabin in the mountains over Thanksgiving with my sister's family and my mother so we all decided that we were going to test beforehand. I talked to it about it the whole time we were driving there, promising him his beloved cheese quesadilla at Taco Bell afterwards. The strategy was lots of communication, lots of bribing which usually works pretty well. He was in a very good mood and was echoing me eagerly. </p><p>"After the nose test we're getting a quesadilla."</p><p>"After the nose test we're getting a quesadilla!"</p><p>I should have know that things were going to go south when we stood in line behind a set of nervous preschoolers. They both started to cry as they moved toward the front of the line and saw the clinical set up inside the community center. Children crying is kryptonite to my son so he started making anxious noises and putting his fingers in his ears. </p><p>When we finally got up to the table where we were asked to show the QR code for our registration, I was greeted by two very tall, confident Asian men in their early 20s. Through their PPE I could see that they both had haircuts and tattoos that communicated a high degree of hipness. </p><p>I told them about Josh's autism and intellectual disability and they confidently had Josh sit down and came at his nose with a long swab. Things went bad pretty quickly. Josh was not at all interested in having something go up his nose and started screaming, "No! NO! NOOOOOO!" He started to flail his arms and kick with his feet. The chair went flying.</p><p>The cool Asian men in PPE tried to hold him down enough to get 10 swirls of the swab in each nostril but it just got worse. Josh screamed like he was being tortured. For a second I thought about the faces of the people in line outside and wondered what they thought was going on and what might be in store for them when it was their turn to get tested. It made me want to laugh except that I also wanted to cry. </p><p>It was all going to hell in a hand basket when a short, older white woman came over and took charge, ordering the men to stop trying to hold him down. She took a couple of deep breaths and we all followed suit. We sat there breathing deeply together while everyone in a large auditorium were all probably very aware of us. </p><p>Then the woman told Josh in a very calm but authoritative voice, "Josh, we need to put this in your nose. I'm going to let you do it with me and we're going to count to ten." She held out the swab and let Josh put his fingers around it while she also held onto it. Then together, they stuck it up his nose and swirled it around. He didn't like it but he did it. And when she told him that we were done and that he had done a good job, he said, "Want chocolate." I quickly gave him a piece of the leftover Halloween candy that I had in my purse. The lady gave him the rest of the candy while I got my nose swabs. Just as I was finishing, I saw that Josh was holding her hand and asking her for a quesadilla. </p><p>As we drove from the community center to Taco Bell, I could literally feel the tension swirling around my body like someone had taken all of the stress from the past 7 months and and squished it into a tight bolus which I had swallowed. Adrenaline pulsed down my arm like little arrows. It's been a while since Josh has had a full scale melt down like that but, wow, he can still do 'em pretty impressively.</p><p>When we got back to the parking lot outside of his school, I turned around to see my beloved son contentedly eating his prize from Taco Bell like the generally calm, happy person that he usually is. I love this kid so much it hurts. I took a deep breath and said, "Ok Josh, let's go back to school." He was quiet for a minute and then he said to me, "But first chocolate." </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgElc77Qr1lAW3W5FB8ijZEhg4kN8WNzrUd6ydKPThjZrAAXNaOo0jhyphenhyphenWnfc3lMoLO_tM7-3AV6dIY5RjzbFivkmmSGMK3PI-IR_SvbgoSKoOa9j-mQO5U3B88iHGjPpZo0HadFNHQt2sw/s2048/IMG_7419.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgElc77Qr1lAW3W5FB8ijZEhg4kN8WNzrUd6ydKPThjZrAAXNaOo0jhyphenhyphenWnfc3lMoLO_tM7-3AV6dIY5RjzbFivkmmSGMK3PI-IR_SvbgoSKoOa9j-mQO5U3B88iHGjPpZo0HadFNHQt2sw/s320/IMG_7419.JPG" /></a></div><br /><p><br /></p><p><br /></p>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-8386440672790322342.post-23309323614577278162020-10-12T21:25:00.005-07:002020-10-13T12:04:52.423-07:00Rain Man <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqVZ9ErKuqi-yjmoPsrbr2bRtTOMb-Wj0lb9tAqsWfWectHzVoeeDY1xTd-CGmPLmC6t6_PVRFBpwNPViTuQxRRpTLDQDtIlxIPk86RqCgwqNPX9B0RruRXqqx_WNvVfAxCF791nQzchg/s300/download-2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="168" data-original-width="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqVZ9ErKuqi-yjmoPsrbr2bRtTOMb-Wj0lb9tAqsWfWectHzVoeeDY1xTd-CGmPLmC6t6_PVRFBpwNPViTuQxRRpTLDQDtIlxIPk86RqCgwqNPX9B0RruRXqqx_WNvVfAxCF791nQzchg/s0/download-2.jpg" /></a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">My husband Alex is very committed to our daughters' movie education. A veteran movie and TV watcher, Alex loves sharing the excellent films of his childhood, youth and young adulthood with them whenever they are willing. At 13 and 14 they know more about World War II movies, sports themed movies and movies of the early 80s than most other kids their age. We are aware that time may be running out on getting them to watch movies with us as they have just started high school and are on the brink of almost always choosing time with friends over time with parents.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Right before the school year started this year we realized that the girls had never seen Rain Man. Given the fact that it's about a sibling relationship with a brother with autism, we skipped the usual back and forth about what people wanted to watch and just decided that we just had to watch this. Hope and Anna had never heard of this movie and had no idea what it was about. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Anna was hesitant at first saying, "It's kinda long, Dad. Can we watch something else?" </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">We insisted, saying, "Just trust us. You'll like it."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">They did like it. We laughed. We cried. We called out unrealistic and disturbing things (like Tom Cruise's girlfriend kissing Raymond in the elevator). Mostly, we resonated. Here are the top four points from our post movie-watching conversation:</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">1) <b>Dustin Hoffman deserved his Oscar. </b> We thought he did a great job embodying a person with autism. When his character had meltdowns or dealt with stress through saying things over and over again it felt very real to the four of us who have not only lived with Josh for a long time but have also observed his peers.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">2) <b>Not all people with autism have savant syndrome.</b> Why does it seem like everything that in everything that Hollywood pumps out people with autism also have savant syndrome? For example, we are fans of the Good Doctor, where the main character has both autism and savant syndrome as well. He can figure out all sorts of medical miracles with his superhuman capability of picturing the details of the human body in his mind. If Josh had savant syndrome, what kind would we want for him? Musical ? Mathematical? Is the ability to draw hairdryers and fans on the magnadoodle for hours at a time a superpower? We once had a music therapist who was sure that Josh was a musical savant with perfect pitch. About a $1000 in music therapy lessons later, we realized that he didn't. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">3) <b>People with autism are capable of expressing a wide range of positive human experiences and emotions. </b>We loved how Raymond had moments of humor, affection and joy. We really resonated with the movie makers' choice to have Raymond be a well-rounded person who had the whole human gamut of emotions and not just an amalgam of stereotypes of what people think that people with autism are like. Our Josh is a fount of happiness, peace, confidence and curiosity. We appreciated that as Charlie got to know his brother as a multi-dimensional person so do we. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">4)<b> In this story, institutionalization was the answer. </b> Yes, this film was made in 1988 but we were curious about how people's perspective about the need to house people with autism and other disabilities in institutions have changed. In this particular story, the best thing for Raymond ended up to be living in the institution which he had already lived in for decades. It didn't hurt that Charlie and Raymond's father had tons of money and could afford to house Charlie in a very nice institution. Also, Charlie was clearly not in a place to be able to suddenly and responsibly live with Raymond. Still, we wish that there were more examples in the media where families are shown to be living and flourishing with people with autism.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">For those of you who know real people with autism, what felt real or interesting about this movie? What felt off or wrong? What do you think that this film says about people with autism? </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-18081905951054979152020-09-07T20:31:00.004-07:002020-09-07T20:34:31.094-07:00Family Meeting<p>Part of our survival strategy during COVID is to have family meetings. During these times we try to resolve conflicts, agree upon expectations about chores, clarify family policies about online behavior etc. Now, remember that my husband and I as well as our two 9th grade girls are all raging extroverts and these meetings are places where strong opinions and emotions are being unfurled so you really have to bring your A-game. Your mind has to be sharp and your timing has to be ON or else you might not get any airspace or you might lose precious time in an endless bunny trail of random disagreements. I've led a lot of meetings in my life and our family meetings are pretty much the zenith of leadership challenge. If you lose concentration for a split second, you are bound to lose control and someone will end up leaving the room or crying. </p><p>We were having one of those highly tension filled meetings in our living room when Josh sauntered out of his room and plopped down next to his sister. We all stopped for a second because Josh does not usually join in on these meetings. He had his headphones on, his ipad in hand and seemed pretty happy so we just continued on with our meeting agenda. </p><p>At one point, the emotional tension was really starting to build. I can't remember what the topic was but there was considerable disagreement about it. Things that were being said by one person were taken as seriously offensive to another family member. I wondered for a second if this was going to be one of those meetings that we have to halt and come back to later. </p><p>But just at the right moment, Josh entered the conversation by echoing something that was said a few minutes earlier in the conversation. </p><p>"That's totally inappropriate!"</p><p>The rest of us stopped, looked at each other and couldn't help but to laugh. </p><p>"That's totally inappropriate!" </p><p>"Joshie, is it totally inappropriate?" I asked my sweet boy.</p><p>"Yes." He said, very calmly, focused on this ipad. </p><p>That little moment of levity was all we needed. We were able to finish our meeting and iron out our differences with much more calmness. Josh had been just the special guest consultant that we needed to survive another meeting with teen girls who are trying their best to survive a pandemic (and their frazzled parents). </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT0HXUXo0CNdKPiDPTohEaoPtX5gF5AiC7-ErX-K6j7qPr2qaYnmjoJALekymZ5yU79hYWcZe80AQ7eo0fnH0SC7lq_inkfA54ld3DPgwdRv62fVSrx9d2bXdFFRlcx3a2seOCmO0UKVo/s2048/IMG_7046.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT0HXUXo0CNdKPiDPTohEaoPtX5gF5AiC7-ErX-K6j7qPr2qaYnmjoJALekymZ5yU79hYWcZe80AQ7eo0fnH0SC7lq_inkfA54ld3DPgwdRv62fVSrx9d2bXdFFRlcx3a2seOCmO0UKVo/s320/IMG_7046.jpeg" width="320" /></a></div>(This is not from a family meeting but another time where we were just hanging out together.)<br /><p><br /></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-26147384249079642562020-08-17T14:13:00.005-07:002020-08-17T21:53:07.524-07:00Happy as a Clam<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKAsrRS5H0MIgNdcoivka12YNEq9OswPQ4-s9qlp1P9nGHY99g0HTmDcAVj2PGpIHnW7Vo_mu6dlUSELQf7pkFaMuBI1T6DCJ3zQ85TwPn2-c6r-lYZcLQf4-59jwnxrzgp2RNTARtbc4/s2048/IMG_7050.HEIC" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKAsrRS5H0MIgNdcoivka12YNEq9OswPQ4-s9qlp1P9nGHY99g0HTmDcAVj2PGpIHnW7Vo_mu6dlUSELQf7pkFaMuBI1T6DCJ3zQ85TwPn2-c6r-lYZcLQf4-59jwnxrzgp2RNTARtbc4/s640/IMG_7050.HEIC" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">When we first arrived at our friends' beach house I was already a mess. I was afraid that our unruly, chaotic mop of a dog would pee in their house. I kept thinking about all of the things which I had forgotten to pack. It was hot. I was already tired. Of course, the biggest worry, as always, was about how Josh would do. This was a place where we had never stayed before and Josh is always stressed by new places. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">We always let Josh stay in the car as long as possible while the rest of us unpack the car and get situated in any new place. Alex brought all of Josh's accoutrements into the room which he would get to stay in all by himself: his stereo, his Ipad, his magnadoodle toy. When there was nothing left to unpack I went out to the van to coax Josh to come in. I can't remember if I had to bribe him with a snack . . . probably yes. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I feel bad saying this but, with our family, going on any trip is a big fat risk. We're definitely had our share of family trips that have spectacularly NOT gone well. For the past twelve years, we have had the most success vacationing at our dear friends' lake cabin in the mountains. Josh gets to stay in the basement family room where it's quiet and he gets his own space. He loves it and he knows what to expect. If he hears us mentioning "the lake cabin" Josh will start saying "wanna go to the lake cabin" over and over again. But this year our friends are in the midst of a remodeling project so it wasn't an option. Also, we happen to be in the middle of a pandemic this summer so we assumed that we would just stay put. Just when being in our house was going to drive us fully bonkers, some other friends reached out asking if we might want to stay at their beach place about an hour away. Uh, yeah!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Today is our third day here and we finally felt ready to take the risk to take Josh down the mini-hike down to the beach. The last time we took Josh to the beach, he didn't like it and he wanted to go home right away, which was a bummer for the rest of us. But the beauty of this place was just so ridiculous that we had to try again. Hope went down earlier than the rest of us and she texted me, "MOM! THERE ARE DOLPHINS!" I looked out of the main bedroom's window and, sure enough, I could see a pod of dolphins frolicking in the water below not far from the shore. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">That was it. I summoned the energy to pack up all of our beach stuff and drag Josh down the path and three sets of very steep steps down to the beach. He was scared but he held tight to the guard rail and my t-shirt and carefully headed down. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">It was pretty much love at first sight. Josh plopped himself down in the wet sand and, for the next two hours, delighted in the sensory input of the cool waves hitting his body. He was like a little brown lighthouse of joy, waving his arms in the air, laughing loudly and saying some of his favorite words; "feelings!", "abortion!", "cocaine!", "train!". Several people walked by and gave us a smile. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Alex and I took turns closely supervising him in the water while admiring how well the girls had taken to boogie boarding. We each got some time to ourselves under the umbrella to read as well. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">To top it all off, I quickly found that if I dug into the wet sand a little bit with my feet, it was not too hard to find clams! Be still my immigrant heart! Not only was this day going so well but was I going to have FREE seafood to cook for dinner as well? This is crazy! </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Ok. Not everything in a given day has to be perfect in order for a day to be wonderful. It turned out that there is a quarantine on shellfish in this area because of an abundance of a certain marine bio-toxin so we couldn't eat the clams. Also, one of my supposedly independent teens elected to not apply sunscreen prior to swimming in the ocean for hours so some amount of wailing about crispy skin ensued. But we all agreed that the day had been very good and we were filled with gladness and gratitude. </div><p></p>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8386440672790322342.post-72064225165023564572020-03-29T19:37:00.001-07:002020-03-29T20:00:45.835-07:00Abortion, Cocaine and Such<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwM8ExBBgxjV-rWQrrrk-GbPpvgMYS9OATw-gKbp0rlCAN8sr8qcN7V5il2SZH5jLsUW2BPWKB-iIjzmf9_QQx9eexv8-q02olNEO5D0QHLdTKCZiKqpbTcrb59mengNkZGfvEWjaruiw/s1600/IMG_5480.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwM8ExBBgxjV-rWQrrrk-GbPpvgMYS9OATw-gKbp0rlCAN8sr8qcN7V5il2SZH5jLsUW2BPWKB-iIjzmf9_QQx9eexv8-q02olNEO5D0QHLdTKCZiKqpbTcrb59mengNkZGfvEWjaruiw/s320/IMG_5480.jpeg" width="240" /></a></div>
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I think I might have solved a long standing mystery in our household. As I mentioned in my previous blog post, Josh has a habit of repeatedly speaking out a word or phrase which he takes a liking to. We are guessing that he doesn't speak the word for what it means to most of us but he likes how it sounds. Sometimes they're nonsense words that he's made up like "recordian". Oh how he loves to say that. I'll walk into his room and he'll be saying, "recordian" and just savoring the sound of it with a sweet smile it like he's had some fine wine or gourmet chocolate or something.<br />
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One of his favorite real words is "abortion". He seriously says it all the time. A new word which Josh is fond of is "cocaine". It's both annoying and disturbing to have him say these words over and over and over again. They're not lovely words. I don't like that he says them and I don't know where he got them.<br />
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Starting about a year ago, he'll say a word or phrase aloud and then he will keep saying it until we say it back to him. Maybe it's his autistic way of being relational or interactive but it sure doesn't feel very relational from the neuro-typical side. And if we don't say it back to him, he'll keep saying it with more volume and intensity until one of us breaks down and finally says the word just to get him to shut up, especially if we're in a car together.<br />
<br />
"Abortion? Abortion? ABORTION!"<br />
<br />
"Yeah, abortion, Josh"<br />
<br />
"Hey, I thought we weren't going to say it back to him!"<br />
<br />
"Yeah, we need to break him of this pattern. It's so annoying!"<br />
<br />
"I just can't stand it anymore. I just need him to stop."<br />
<br />
"Yeah, I know."<br />
<br />
(3 minutes pass)<br />
<br />
"Cocaine?"<br />
<br />
You get the picture. Anyways, today I walked into his room where he was listening to the radio and caught the tail end of someone sharing a testimony on the Christian radio station. The person was sharing about how he used to be a major cocaine user until Jesus came into his life and now he's sober. Oh. My. Goodness. That's it. Josh has been picking up these words from CHRISTIAN FREAKING RADIO! I bet that's where he got the word "abortion" as well! Ok now. How can I fix is little CD player to not be able to play Christian radio? And no rap stations either. That might be where he's getting all his swear words.<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8386440672790322342.post-75442030330038043452020-03-21T14:47:00.000-07:002020-03-22T09:54:42.841-07:00Five Blessings and a Bummer During QuarantineLike most parents, Alex and I are struggling to create some sort of routine for our kids during this time of "sheltering in place" during the 2020 coronavirus pandemic. I think that all of us are disoriented and stressed. But do you know who's not disoriented and stressed? My 17 year old son, Joshua. He has no idea why we stopped going to school but he seems to be quite cool with it. School ended a week ago and our household is just barely starting to achieve some semblance of a new structure.<br />
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Mostly, Josh gets to hang out in his room listening to music and drawing which he's happy to do. He takes long baths and goes for at least one walk around the neighborhood every day. Sometimes, we drag him around to the grocery store or to get pet food. As long as he has some snacks, he's very chill about running errands.<br />
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Today, I was struck again about what a blessing Joshua is. Here are five things that I have enjoyed about Josh and one thing that I didn't enjoy:<br />
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1) Josh has become a good walking buddy. When he arrives at a street corner, his years of orientation and mobility training kicks in. Josh says quietly to himself, "Look left, look right. Safe to cross." Then he takes my arm and crosses the street. It's the sweetest thing ever!<br />
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2) Josh wakes up happy and hungry. Whereas my other teens have a proclivity to sleep till 11am or noon, Josh wakes up between 7-7:30 am everyday. I hear him rummaging around in the kitchen and fear of him pouring my sugar canister all over the floor wakes me up in a jiffy. Once up I decide to make myself a cup of coffee and then I am rewarded with a quiet couple of hours. Josh has a couple of pieces of toast and some frozen smoothie cubes then he retires to his own room.<br />
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3) Josh is unbelievably happy in the bathtub. He loves the sensory input of water and our babysitter recently bought him this bath toy which he finds to be a never ending delight. ("It's like a shower head!!") I am not kidding, Josh can take a three hour bath and make happy noises the whole time.<br />
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4) Josh comprehends that if he wants to use my phone for 5 minutes to watch a YouTube video he has to work for it. 5 minutes with my phone equals at least three chores. He's actually pretty good at unloading our dishwasher, although if left unsupervised, he can leave all the glasses upside down on the edge of the sink. Still, I find it helpful to have him contribute in this way and he never complains. Other chores include taking out the trash and recycling, watering the plants in the front or back yard, brushing his teeth (not a chore but still works in the same way) or putting away clean clothes.<br />
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5) Josh still loves to sniff Mama's hair. Actually, he sniffs Hope's hair as well. I think he really has a thing for long black hair. Maybe blond hair doesn't smell as nice? Alex has no hair on his head so he doesn't get to participate in this. One time Hope had a friend over who had the most beautiful long black hair. The girls were watching a movie when out of the corner of my eye I saw Josh headed over to sniff her hair. It was like everything went into slow motion, Josh going in for a sniff, me trying to head it off saying, "Nooooooooooooooooo". Disaster was averted but the friend seemed a little confused. Anyways, sniffing people's hair is not the most prosocial behavior but it's one of the only ways that Josh initiates connection and affection. And it makes him happy, which makes me happy.<br />
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The Bummer -- Yesterday Josh and I went for a walk to the "Little Free Library" down the street. For those of you who have not seen these, they are little shelves or cupboards that people put up on their front yards where people can leave a book or take a book. It tends to be a low key place where people sometimes congregate. Three people from the same household were there already and as we approached, smiling Josh said in a loud and delighted voice, "F*cker!" Dude, I have no idea where he got that! Seriously, I don't think that I've heard that word in my house ever. (Other not nice words but not that particular one.) I do know that Josh will pick up a word that he hears and rolls it around in his mind and mouth. Last month his favorite word, unfortunately, was "abortion". Oh how he loved to say that word. Sometimes he'll keep saying it until we say it back to him. It's the only way to get him to stop. Well, all I know is that I haven't had a good mortification like that in a while.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-64891631735814271292019-08-31T10:34:00.000-07:002019-08-31T11:17:15.158-07:00Morning Clapping<div class="separator" style="clear: both; text-align: center;">
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I have a seventeen year old son who wakes up happy on most mornings. How's THAT for counting your blessings? This is not to say that he's happy all the time. When he's unhappy, you'll know it because he feels free to cry, yell and throw things. But the kid loves to be alive most mornings.<br />
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For example, today is Saturday and, as we did not have anything going on in the morning, I slept in past our usual early morning family wake up time. The first thing that I hear is the sound of jubilant clapping. Joshua is drawing some of his favorite things on his magnadoodle toy (such as hairdryers and showerheads), putting the magnetic pen down and then clapping. He can do this for hours.<br />
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Eventually he comes out to the kitchen and starts rummaging around for something to eat. Without supervision his greatest interest, of course, is to find cookies. Josh's sisters have been on a baking kick for quite a while now so he knows that they often hide containers full of baked goodies in various places in the kitchen, ostensibly to keep him from finding and eating them. But, though he may have intellectual disability, he's not stupid so he can usually find any hidden sweets or baked goods. Given further unsupervised time, he will eat the whole thing, leaving prodigious amounts of crumbs on the floor for our dog to clean up.<br />
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Alex even put a "baby proofing" clip on one cabinet in an attempt to keep Josh from accessing it but he figured out how to work it pretty quickly. Finally, we ended up having to buy a plastic "lock box" to keep chips and granola bars in so that we could have some secure location in the kitchen. Josh has not figured out how to open this yet but the problem is that the rest of us often forget to lock it up so Josh knows to check it first when he's hankering for a chocolate chip breakfast bar.<br />
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Hearing Josh in the kitchen is what finally got me out of bed. I offered to make him some toast and he grinned broadly.<br />
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"Want butter on it," he said.<br />
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Josh also really enjoys what we call "frozen yogurt". This is the leftovers of homemade fruit smoothies frozen into ice cube trays. He won't eat it in liquid form but once frozen, he loves it. He treats each cube like a little delectable piece of luxury, nibbling first on the edges then taking slightly larger bites, smiling as he does.<br />
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The house is really quiet this morning as Josh's sisters are away on a youth retreat. I am listening to my son making happy noises while eating his breakfast. Every once in a while, he will take a break from his voracious eating and express his joy through a few seconds of vigorous clapping. I know that he might just be seeking sensory input. But sometimes I imagine that Josh is giving thanks to God in his own way for his life. And in my mind, I see God smiling back, very pleased at His son.<br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-38463569208113169162019-05-27T20:44:00.000-07:002019-08-31T12:46:00.225-07:00Two Words: Retainer and Toilet"Mommmmmm. Where's my . . ." I hear it a thousand times a day. It's uttered at the beginning, middle, and sometimes near the end of searches for lost items. Wallets, homework, permission slips, hairbrushes, special rocks which I never knew that they had, they all have a way of hiding themselves in the corners and crevices of our house. Tonight, it was her retainer. Somehow, it was assumed that I would know where it was. I did not.<br />
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"Oh . . . my . . . gosh. Mommmmmmm! Josh threw it into the toilet!!"<br />
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Josh sat at the dining table eating his toast with neither guilt nor amusement.<br />
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"Josh, did you throw your sister's retainer in the toilet?"<br />
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"Yes"<br />
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"What do you need to say?"<br />
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"Thank you."<br />
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"No Josh. Sorry."<br />
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"Sorry."<br />
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What do you think? Is he innocent? Does he know what he is doing or no? </div>
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In the face of something that Josh has done wrong, it is never clear whether he is aware of his transgression or not. Usually, I am too preoccupied by my own (often triggered, distracting, unhelpful) response to really be able to assess whether Josh is experiencing remorse, guilt, or defensiveness. What I am wondering these days is this: Does Josh understand that he does things that are wrong? Does he know that he is a sinner? Or is he "an innocent"? In biblical language, does he not have the "knowledge of good and evil"? </div>
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As a parent, I am aware that part of how children grow in their conscience is that parent teach them and reinforce that reality by giving them consequences for their actions. But how does one punish a kid who responds like this? I can't remember now if I gave him a consequence in this situation. We were too busy freaking out and trying to figure out if we could save the retainer. </div>
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Miraculously, my daughter was frustrated but not angry.<br />
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"Why aren't you angry, Hope?"<br />
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"I don't know if Josh knows what he's doing or not. Maybe he does. I don't know." She laid on my bed writhing with tension, amusement, aggravation and a drop of love.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-50271235864721799642018-09-25T12:07:00.000-07:002018-09-25T16:27:00.854-07:00A Fable about a Table<i>**Friends, this post is longer than my average post. Please give yourself a few extra minutes to read. To help you, I've put in more than the average number of photos. Thanks for engaging with my life and my thoughts! </i><br />
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My husband tells me that his parents bought this table as a part of a big home redecorating project in the 70's. That would explain how ugly the table was. The legs to this table always made me think of furniture that might be in King Arthur's court; heavy, ornate and . . . medieval. But it was also sturdy and free so we've had it in our dining room ever since Alex's dad passed away. It is the only dining table that my kids had ever known.<br />
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Despite all of the effort that we put into rearranging so that they could have desks in their rooms, my girls do their homework almost exclusively on the dining table. As soon as I come into the house I plop my computer bag and my purse onto a chair at the table. Groceries are sorted at this table. Almost all of our meals have been eaten at this table. Many guests have been hosted. Conflicts have been resolved. Serious conversations have been had. Many prayers have been prayed at this table. Our dining table is, in many ways, the heart or the hearth of our family home.<br />
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Alex has always taken care of this table as a precious artifact from his family history. When we have to move the table, it must be done with two people so that it can be lifted not dragged. Expanding the table by adding additional leaves to it must be done with great care and attention lest it be jostled too much and things get out of joint. I never knew if this was because the table was so important to him or because he's just a really meticulous dude. It might be both.<br />
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For a long time we had these custom made cushiony cover thingies on the table at all times. I don't know why. They came with the table so we kept them on. And because they were ugly, we always had a table cloth on the table. And because we had kids, the table cloth was always getting disgustingly gross so we washed the tablecloths almost every day.<br />
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Two years ago I asked myself why we were putting so much effort into protecting a table that was almost 50 years old and far from my ideal table. I made a big change to our lifestyle and decided that we would let our table be naked, come what may.<br />
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Well, what came was that one day, while his mom was watering plants in the backyard, Josh took a ball point pen and carved a significant number of shower heads, hairdryers and fans into the table top where he sat to have an after school snack. Here are some pictures of his "designs".<br />
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My first thought was that my husband was going to have a cow. My second thought was that the table top was already pretty old and worn. I posted some of these pictures on Facebook and a friend suggested that I simply refinish it. Another friend even suggested a specific place nearby who might do a great job. But given the busyness of my life and my tremendous hostility to taking on household projects, I knew that this would never happen. I just internally prepared myself to live the rest of my life with a dining table with some artwork on it. Maybe it would just be a conversation piece. Or we just never let any non-family member sit where Josh usually sits. I contemplated returning to table cloths.<br />
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Alex did have a cow, but just a little one. He had a calf. He was upset but quickly submitted to the chaotic power of Josh. We have an autistic child. Whaddya gonna do? Fight to have a semblance of order in our lives? I think not.<br />
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I'm not sure how it happened but somehow my husband and a good friend of his were chatting about what happened to the table. The friend happened to be a designer and inventor who knew how to work with wood. And he happened to have a power sander. I kept coming home from work to see them working on the table with great gusto. I think they were actually having fun. Alex was really enjoying learning a new skill, something that he always wanted to know how to do but never had the time or bandwidth.<br />
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This is a picture of them and the table before the final varnish. It was an amazing transformation and resurrection. I couldn't believe it. It was a gorgeous color of reddish brown; shiny, gleaming, almost radiating a loving warmth to our home.<br />
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Here is a pic of the final work. Beautiful, isn't it?<br />
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How I wish the story ended there but, alas, it does not because two nights ago, the girls had left a permanent marker on the other end of the table from where Josh sits. As I was preparing his pills, in a split second Josh took the black permanent marker and did this.<br />
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I turned around to see him holding the marker in his hand.<br />
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"Josh, what are you doing?!!!" I yelled.<br />
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"Josh, what are you doing?" he replied, calmly, eating a tomato. If he sensed my emotion, he gave no indication. It occurred to me that even our dog knows when he is in trouble. Luther knows when to avert his eyes and get out of the way when I find that he's ripped up a stuffed animal or has peed on the carpet. But my son acted like it was no big deal, like he was the one who knew some peaceful, deep wisdom that I could not yet fathom. I just stood in the kitchen with my mouth open, silent, fuming and flummoxed. Our beautiful, refinished table, was ruined once again. After a few minutes of silence Josh said to me, "Want more toast". Sigh.<br />
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Years ago, a wise mentor once taught us that we have to remember that the many things that we work to build in our lives are like sandcastles. We work hard to build something and we want them to be beautiful, excellent, impactful, and lasting. But in the end, like sand castles, the things we build are ultimately washed away. Organizations, churches, ministries, institutions, programs, careers, wonderful as they may be, they all have their ends, often sooner than we expect. Even expensive dining tables don't last forever. None of the things in my house will last forever. Even my house will not last forever. From a Christian perspective, the only things that lasts forever are people and God (and maybe animals, I'm not sure about that one yet).<br />
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A few weeks ago while we were on vacation at the beach, we ran into a pair of brothers who were hard at work on a super-duper sand castle. They had roped off a section of the beach and were building a replica of an actual European castle that they had researched. Both were engineers who grew up at the beach making sand creations in their childhood. They spent quality time together once a year by spending a whole day making something beautiful out of sand. This project took them over 13 hours. They arrived with their many tools and buckets before dawn and we helped them pack everything up using our flashlights on our phones. As we chatted at the end of the day, I asked them why they did this and wasn't it a bummer that their creation would be washed away by the next morning? Exhausted but happy, they said that it's all part of the process. They did not expect it to last forever. That was not the point. Their wives let them take a whole Saturday away from their families not to build the sandcastle but to invest in their relationship as brothers.<br />
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I've been thinking about this sandcastle ever since that day. The beautiful, valuable things in our lives are but a reflection of that which is ultimately lasting beauty. We will enjoy our lives, our relationships and even our things better if we accept that and just give ourselves to the process of life in this temporal world.<br />
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<br />Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8386440672790322342.post-82760576571431631882018-07-03T08:58:00.000-07:002018-07-04T21:46:06.254-07:00Minor Miracles and Other Things that Keep You Going<div class="separator" style="clear: both; text-align: center;">
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Being fifteen has meant that Josh is sometimes aggressive. When he wants something but can't have it, he might grab, scratch and even hit people around him. One time when we were in our van on our way home from a family <strike>vacation</strike> trip to SeaWorld, he suddenly got really frustrated and pulled a big handful of hair from his sleeping sister who was in the row in front of him. That was a huge bummer. It broke a lot of trust with that sister and she, understandably, declared that she was going to take a break from helping Josh. The other sister, also understandably, defended him, declaring that he couldn't help it because he gets frustrated just like all of us but he doesn't have the tools to manage and express his emotions. <br />
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We've employed various strategies and behavior plans to deal with this unfortunate but somewhat expected pattern given Josh's age. He's a teenager. His brain is going through a normal adolescent growth process which includes hormonal and adrenaline surges.<br />
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One of the things that we do is to leave his presence and let him know that he doesn't get to be around us if he's being demanding or agitated. Josh's wonderful respite provider, K, knew to do this the other day when Josh was becoming aggressively demanding. Apparently, Josh was yelling and grabbing K's arm. K firmly told him that he was going to have to be in his room by himself for a while and that K was going to be in the living room. K said that Josh yelled and made unhappy noises for a few minutes and then was quiet for about 15 minutes.<br />
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Josh came out to the living room and silently sat down next to K and then did something that shocked our experienced respite provider. Josh said, "I'm sorry."<br />
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"It was a miracle!" K said as he recounted the experience to me later. "You know, my colleagues and I talk about how we stay motivated for our work by the little miracles that we experience every once in a while. This was one of them."<br />
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It's so true. I know many adults who don't seem to know how to utter those words in the course of their lives. How did Josh access those words and place them in a socially appropriate context? Was he just repeating a phrase that he heard in a song or on the radio? Maybe. But it touched K's heart nevertheless.<br />
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As a Christian, I believe that being sorry and acknowledging one's faults/ shortcomings/ fallenness/ sins is a crucial part of opening one's heart to grace. Yet I also know how difficult it is to speak those works of acknowledging wrong. Sometimes my husband has to wait a good long time to receive an apology from me in a situation where we both know that I was wrong.<br />
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I know that apologizing not something that is modeled by many "adults" in this world but somehow, we all know that repentance is what makes healing and relationships possible. Sometimes, an apology is a miracle; a sign of some amount of self-knowledge and a desire to heal. It is a sign of grace and hope. It is the touch of God. What a beautiful thing to see that, in that moment with K, Josh had been given the gift of being able to say, "I'm sorry".<br />
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I wonder what our world would be like if people were able to say, "I'm sorry" just a little bit more each day. I wonder how my life would be changed if I was just a little bit freer to say, "I'm sorry".<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8386440672790322342.post-32237510344397420252018-02-16T08:21:00.000-08:002018-02-17T17:24:34.777-08:00Swearing, Profanity, and Cursing<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Today, as Josh was making himself some toast he dropped the butter knife onto the floor and immediately exclaimed, "Sh*t!" I looked up with surprise in time to hear him say it again three times with vehemence, "Sh*t, sh*t, sh*t!"</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">After surprise, came amusement. After amusement, came pride. My son was using an interjection in a contextually appropriate way! Way to go, buddy!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As you may know, if you have read any of my other blog posts, Josh is not someone who has a lot going on in the way of expressing language. In fact, his spontaneous (non-prompted) language falls generally in two categories; echolalia (random echoing of things that he has heard before without appropriate meaning or contextualization) and expressing simple needs or desires ("I want toast").</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">To have Josh use profanity appropriately with some amount of affect was kind of awesome! At the same time, I wondered where exactly Josh picked this up. Was it from us? From school? From kids on the bus? I wish I could say that I knew for sure that he must have had this modeled for him outside of our home but, alas, I cannot. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In our early parenting years, when blow out diapers, interrupted baby naps, and finding people spreading poop on walls were a regular part of our lives, I noticed that Josh was much more likely to echo swear words that came out of my mouth than anything else. Perhaps this was because they were accompanied with clear and passionate emotion. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We've been talking a lot about swearing with our (6th grade) girls recently. We've wondered together why swearing is supposedly bad. I hate it when people just tell you not to do something without having a reason so I've been thinking about it a bit myself; Do you refrain from swearing just because it makes you a bad person? Why do we have the sense that we should not swear? True, the Bible says that we shouldn't swear but I think that means swearing as in "making oaths" or taking the Lord's name in vain. Ok, so we don't say, "I swear to God..." or use Jesus' name in irreverent ways. But the specific question that we have sought to answer is "What exactly is wrong with using profanity? </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In her book, <span class="a-size-extra-large" id="ebooksProductTitle" style="box-sizing: border-box; color: #111111; line-height: 1.2; overflow-wrap: break-word; word-wrap: break-word;"><u>Swearing Is Good For You: The Amazing Science of Bad Language</u>, Emma Byrne writes that "S</span><span style="background-color: white; color: #111111;">wearing, it turns out, is an incredibly useful part of our linguistic repertoire. Not only has some form of swearing existed since the earliest humans began to communicate, but it has been shown to reduce physical pain, help stroke victims recover their language, and encourage people to work together as a team."</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #111111;">Even the apostle Paul uses "coarse language" in Philippians 3: 8 when he says, "</span><span style="background-color: #fdfeff; color: #001320; text-align: justify;">What is more, I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them garbage, that I may gain Christ." That word which is here translated "garbage" is more accurately "the refuse of animals", "dung" or "poop".</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">All of these things may be true but my experience tells me that peppering one's language with profanity hurts relationships, especially if one is swearing at someone. Swearing usually adds a jolt of emotion (usually negative) to a conversation or interaction that is draining, uncomfortable or painful to the listener in most situations. There is a degrading and disrespecting quality to swearing at someone. In conflict, profanity usually amps things up rather than calming things down which is not conducive to making peace or bringing resolution. Once you've said, "F--- you" to someone, you really can't ever unsay that.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now that they are in middle school, my girls are discovering that there is plenty of negativity, anger and meanness in this world. Using profanity just adds to it. For Christians, <span class="passage-display-bcv" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; margin: 0px; padding-right: 6px;">Ephesians 4:29 advises,"</span><span style="background-color: white;">Let no evil talk come out of your mouths, but only what is useful for building up,</span> as there is need, so that your words may give grace to those who hear." Also, the practice of self control is important to the life of someone who is wanting to emulate the God of love. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">According to James 1:26 <span style="background-color: white;">"If you think you are being religious, but can't control your tongue, you are fooling yourself, and everything you do is useless". Another </span></span><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">reason all this matters is that the words we use say a lot about what is in our heads. </span><a class="answer" href="https://www.biblegateway.com/passage/?search=Philippians+4%3A8" style="background-color: white; color: #231f20; cursor: pointer; font-family: Arial, Helvetica, sans-serif; outline: none; z-index: 0;" target="_blank" title="view Scripture passage at BibleGateway.com">Philippians 4:8</a> <span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">says, "Whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things". As we think about what's right and pure, cuss words are not helpful.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Words are a very powerful part of creating the reality in which we live as human beings. In general, we ought to try to make our words be edifying, positive, and gracious, for our own sake and for the sake of people who are hearing our words.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But, at this point, if my son wants to express himself by swearing when he drops a knife, I'm still going to smile. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What are your thoughts about swearing? Swearing and parenting? Swearing and being a parent of a child with special needs? Swearing and the middle school experience? Swearing in a household with kids? </span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-71968456499657984152017-06-05T23:05:00.000-07:002017-06-06T22:09:12.258-07:00Clean, Dirty<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "georgia" , "times new roman" , serif;">Do you ever feel like the day can just turn on a dime? One minute you are having a lovely, laughter-fulled time and the next minute things can go so very, very wrong so very, very quickly.</span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Today, Hope and I went to Pet Food Express to give a bath to Luna, a friend's golden retriever who is staying with us for the summer. Since Hope was a toddler, we've been going into this place to watch dogs being bathed here at our neighborhood pet food store. I could drink almost a half of a cup of coffee while I allowed Hope and her sister to stand around and watch as dog owners cleansed their canine family members in neat little stalls with all sorts of hoses and nozzles. And because there were things that looked like shower heads there, Josh often enjoyed being there as well. It was a fascinating look into the exotic world of dog ownership. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Today was the first time for both of us that we got to do it for ourselves. We gladly paid our money and got a shiny, golden token. </span><span style="font-family: georgia, "times new roman", serif;">A very friendly staff person gave us an introduction to the marvelous dog shower system and then </span><span style="font-family: georgia, "times new roman", serif;">we invited our slightly smelly dog to go into the wash area. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Luna was not thrilled but, because she is the world's most obedient golden retriever, she obliged. You have no idea how good it feels to rub a dog's golden hair with almond scented dog shampoo-- really rubbing it in. It's like a sensory meditation. We took turns giving her the free treats that they had at the store. We had aprons on but we got wet anyways. We were laughing. It was awesome. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Luna even sat very still as we dried her now lovely smelling fur. Hope and I felt good about how well we had accomplished this task. We sauntered out of the store refreshed and energized. I paused on the sidewalk while Luna politely smelled a few butts of dogs who were headed into the stores. Hope was considering purchasing a dog cookie for Luna. I noticed what a beautiful day it was. The day was sunny but not too hot. I could smell the coffee from the Peets coffee shop a few stores down. What a beautiful scent is coffee, that wonderful elixer. The scent was smooth, nutty and surprisingly strong. It was like the smell of an old friend. I couldn't help but to smile. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">I clicked my key to open the side door to my van, which was parked directly in front of the pet food store in the disabled parking spot. Josh had been unhappy in the store so I had brought him back to the car, rolled the windows down and left him there to occupy himself with a cup of ice. As the door opened, I realized why the smell of coffee was so strong. Coffee grounds had been sprinkled all over the back of my van. It was in the cup holder, on the floor, on the ceiling and on the seat. It was all over Josh and the bag had been tossed onto the floor below him. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span><span style="font-family: "georgia" , "times new roman" , serif;">In that moment, I realized that Josh must have reached up to the front seat and had found the bag of ground coffee that I had purchased at Peets just before we went to bathe Luna. It must have looked or felt like sand to him because he had poured it all over himself and my van. My son loves to pour things. At parks, Josh loves to watch sand pouring out of his hands. He could do it for hours. It appeared as if he had also attempted to dry-shampoo his hair with it. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">I took a deep breath and tried to not cry. Why is it that you can turn a quick corner and then have chaos whack you across the face with no warning? I guess because life is just like that, a diverse array of scenes and emotions that remind us that we have very little control. </span><br />
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<span class="text Eccl-3-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span style="font-family: "georgia" , "times new roman" , serif;"><span class="chapternum" style="-webkit-font-smoothing: antialiased; bottom: -0.1em; box-sizing: border-box; left: 0px; line-height: 0.8em; position: relative;">Ecclesiastes Chapter 3 says,</span><span class="chapternum" style="-webkit-font-smoothing: antialiased; bottom: -0.1em; box-sizing: border-box; font-weight: bold; left: 0px; line-height: 0.8em; position: relative;"> "</span>For everything there is a season, and a time for every matter under heaven:</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span class="text Eccl-3-2" id="en-NRSV-17362" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">2 </span>a time to be born, and a time to die;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-2" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to plant, and a time to pluck up what is planted;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-3" id="en-NRSV-17363" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">3 </span>a time to kill, and a time to heal;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-3" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to break down, and a time to build up;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-4" id="en-NRSV-17364" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">4 </span>a time to weep, and a time to laugh;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-4" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to mourn, and a time to dance;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-5" id="en-NRSV-17365" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">5 </span>a time to throw away stones, and a time to gather stones together;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-5" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to embrace, and a time to refrain from embracing;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-6" id="en-NRSV-17366" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">6 </span>a time to seek, and a time to lose;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-6" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to keep, and a time to throw away;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-7" id="en-NRSV-17367" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">7 </span>a time to tear, and a time to sew;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-7" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time to keep silence, and a time to speak;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-8" id="en-NRSV-17368" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">8 </span>a time to love, and a time to hate;</span><br style="box-sizing: border-box;" /><span class="text Eccl-3-8" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">a time for war, and a time for peace.</span></span></div>
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<span class="text Eccl-3-8" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span style="font-family: "georgia" , "times new roman" , serif;"><br />Apparently, there are times to be clean and times to be dirty. And the thing about these different times is that we usually don't get to determine them. They come upon us and what we can do is to be in it and respond well. Sometimes these different types of times happen within the same hour. Sometimes we wait for a long time for the season to keep silence to end and for the season to speak to start. Time and the seasons are in God's hands. We have very little power to determine these things. </span></span></div>
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<span class="text Eccl-3-8" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span style="font-family: "georgia" , "times new roman" , serif;">It was a small victory that I did not yell at anyone as I drove my van with a wet girl, a clean dog and a dirty boy home. For the second time that afternoon, I stuck Josh in the bathtub and tried to explain to him that we do not pour coffee grounds on ourselves. He simply said back to me echolalically, "We do not pour coffee grounds on ourselves" and went back to happily pouring water from a cup into the bathtub with utter delight. </span></span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-25373372777822032902017-01-14T23:36:00.001-08:002017-01-15T21:37:48.167-08:00Echolalia from God?<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Echolalia is the "<span style="background-color: white; color: #222222;">meaningless repetition of another person's spoken words as a symptom of psychiatric or developmental disorder". Josh has been exhibiting echolalia since he began to learn how to talk. We've spend a tremendous amount of time trying to teach Josh to respond to questions with an appropriate simple answer rather than by repeating the question. For many years, if you asked him, "Do you want toast?" He would always respond by saying, "Do you want toast?" right back at you. With help from autism therapists, we learned to not give him what he wanted until he replied with a more appropriate response such as "Yes". </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;">Even after many, many years of training and intentional assistance, when Josh is tired or when he does not know what you are talking about, he will simply reply to a question with a repetition of a question. A query such as "How was your day?" will likely solicit the response "How was your day?" because Josh does not know how to answer a question like that.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;">Sometimes when Josh is alone, I will hear him repeating things just because he wants to or maybe he likes the sound of a particular word or phrase. Last month, he was in his room listening to the radio with his headphones on. The quiet of our house was suddenly punctuated with Josh loudly and happily exclaiming "This year, give the gift of beauty!". Another day, I heard him say, "The season of shopping and shipping!" with a follow up of lots of clapping.</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">Recently, Josh was having his breakfast, while I listened to NPR on the radio and cleaned the kitchen. As usual, Josh echoed some of the phrases that he heard on the newscast. I don't know if this is just my imagination but it was strange to notice the specific phrases that he chose to echo. </span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">During a newscast about the besieged city of Aleppo in Syria, Josh repeated phrases like:</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">"Many wounded people trapped."</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">and </span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">"Children are dying."</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">and </span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">"What do they have to hope in?"</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">It felt like some sort of emotional editor or a a personal prayer highlighter of the news for me. I was in the mode of semi-listening to the news while putting dishes away while planning the rest of day. But after the third or fourth seemingly meaningful verbal statement by a kid who cannot understand the news, I began to wonder if it was possible for God to speak to me through echolalia. </span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">I stopped with the dishes, took a seat and waited for a minute. Wondering if I should pray for Syria, interact with Josh or turn off the radio, I just sat with the moment of pause. Josh also entered into the moment of pause. It was a rich, five-second moment of shared attention; plump with wondering and waiting. I felt like God had my attention for the first time all day. Then my son stood up and did a little dance of waving his arms and head back and forth. Then he went back to his room and shut the door like, "My work here is done."</span></span><br />
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<span style="color: #222222; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">Does God ever get your attention in surprising, unexpected ways?</span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-62328553807384667422017-01-03T13:29:00.000-08:002017-01-03T15:42:46.207-08:00What I've Learned from Josh (A Guest Post from "Auntie Rachel")<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I've known Josh almost since the day he was born. Susan and Alex lived upstairs from me and my roommate for Josh's first year of life. In light of his heath issues and my night owl tendencies, I had many middle of the night shifts feeding him very specific amounts since his body didn't give him appropriate signals regarding when to eat or the necessary amount. I don't know how much of it is because he was the son of my very good friends who had wanted him so badly and how much of it is because of that year of helping him to live, but I know that I've always loved Josh.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Yet it's tricky to know how to communicate that to Josh or how to have a meaningful relationship with him.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I no longer live in the same area as his family and, at best, I only get to see him twice a year. Generally, I'm good at figuring out how people work and how to build a relationship with them. With people who are important to me, I figure out how to care for them well, how to be a good friend to them, and how to help them know that they are loved.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have no idea how to do that with Josh.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Some of that has to do with how little time I spend with Josh. Some of that has to do with how little time I spend around people with special needs, particularly autism. Some of that is just Josh and the ways that it can be difficult for anyone to fully figure out how to relate to him, communicate with him, or know what's going on for him.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Perfectionism is a struggle for me and it comes out in my relationships. I work at them. I'm thoughtful with people. I'll go over interactions to figure out what I would have liked to have done or said differently - sometimes intentionally, sometimes compulsively. The more that I care about the person, the more I work. And usually I can see the pay off for that work in strong relationships and people who feel cared for by me.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But with Josh, I don't even know what work would really look like. Despite all of my relational skills, I don't think that I could ever reach the place of feeling like I'm competent and confident at how to relate to him or how to communicate to him how much I love him.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I found myself thinking about Josh recently and aching a bit about how much I love him and how incapable I feel to really communicate that to him. But then God made me take pause. "Oh, Rachel. What's reality here?"</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The last couple of times that I've visited Josh and his family, Josh has clearly wanted to spend time with me. <span style="font-size: 12.8px;">The visit before last, it came up just a couple times. Josh likes to spend quite a bit of time by himself in his room. Most of the time others are not welcome. But he very specifically wanted me to hang out with him. "Sit, please." Josh is often polite while being rather insistent. So, I sat on the end of his bed while he drew or listened to his radio for a while. After a stretch of feeling like 'is this really doing something for him?' I got up and immediately received, "Sit, please." So, I sat.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Several months later on my most recent visit last spring, I was washing dishes on the first night and Josh came to get me and took my arm to pull me toward his room with 'Sit, please.' So we hung out. I played some ukulele for him, but I feel like it just gave me something to do. Josh just liked me being present. During the days that I was there he initiated with me so much that it stood out to the rest of the family as atypical Josh behavior. And it was often enough that there was no way to interpret it as random. We couldn't understand it, but it wasn't random. My last dinner with them, Josh was his usually quiet self while I chatted with his otherwise very talkative family. But when I got up to leave the table, there it was again. "Sit, please."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know why Josh likes hanging out with me. Susan, Alex, and I have speculated about what it is about my personality or demeanor that he finds appealing. But in Josh's way, we're friends. And because I love him, that means a lot to me.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But more than that, my relationship with Josh is now a reminder that I don't have to have it all figured out in my friendships for them to become what I want them to be. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I do think that it's good to work at relationships. They deserve and require that. But I'm never going to need to be reminded of that. I need to be reminded that my relationships aren't as dependent on my work and abilities as I think that they are. Josh is that reminder to me.</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-12603462612199055762016-07-17T01:52:00.001-07:002016-07-23T19:23:01.187-07:00Celebration for Wiping!<div class="separator" style="clear: both; text-align: center;">
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<i>**Disclaimer. This post is happy but clearly about issues of toileting. If you are sensitive to talking about that kind of thing or if you are having lunch right now, you might want to skip this one.</i></div>
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Somebody say "hallelujah!" Can I get an "amen"? Gimme a hand clap! Let's all whoop out loud for today my son took a poo and wiped himself all without any help from anyone.<br />
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I woke up this morning to his big boy body sneaking into our bed on my side. A few minutes later, my husband went to the bathroom and discovered that Josh had already been there. <br />
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"Oh boy!" Alex declared. "Looks like someone had a poo." <br />
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This is bad news because for the past two years, Josh has been able to get himself to the bathroom to do his business but was not very amenable to wiping. Therefore, if he went in the middle of the night, he would simply pull his pants up after pooping and go back to bed. The result was usually not pretty. <br />
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"Is there toilet paper in the toilet?" I asked.<br />
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"Yep, right on top." <br />
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I got up and took a look for myself, not completely believing that my husband had looked very carefully. <br />
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"Hmmm." I thought. "But how good of a job could he have done?"<br />
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I pulled the happy snuggler out of my bed and checked. Actually, he had done a very good job.<br />
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Then it dawned on me. Josh had gotten out of bed, taken himself for a nice morning poo, AND HAD WIPED --- all by himself! Today was the day!!<br />
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And there was no poo in his hair or on his clothes or on the walls. There was no pee on the floor. All of the toilet paper had made it into the toilet. It had all been done correctly. I'm not completely sure about the hand washing but I decided not to go crazy with my expectations. <br />
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Yes, he's almost fourteen but this is a day that I never thought would come. <br />
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We've been in potty training Josh for almost twelve years. He started sitting on the little training potty at age 2. Every step seemed to take a zillion times longer than for a typically developing child. I remember putting night time diapers on him at age 9, worried that we would stop being able to find diapers in his size wondering, "What will we do when he is an adult?"<br />
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Josh just never seemed all that motivated. There was no desire to be a "big boy" and to be like other kids. He was fine just to go in his pants or bed. He was happy to have us wipe him. <br />
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He's had accidents in every possible conceivable place: in the car, at the grocery store, at the bagel shop, in other people's homes, at church, and in the great outdoors. He even went through a season when he would pee on electronics like DVD players, portable stereos and TVs. Ah, what adventures we've had. I've had moments of panic in so many different contexts as I've raised my little blessing.<br />
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How many hours have we spent working on this area? With hope against hope, we kept trying. We had to teach him by rote, by just doing certain things over and over and over and over and over and over and over and over and over again. We taught him to wipe peanut butter off of his arm, then his leg just to teach him how to wipe and clean something. We had him fold exactly 8 squares of toilet paper again and again because Josh preferred to get either two or a hundred squares at a time. We worked on the fine motor part of wiping because, at first, it was more like spreading than wiping. It turns out that wiping is more of a challenge than one would think when you are visually impaired, you have low muscle tone and you don't really care about things being clean.<br />
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I've had consultations from multiple autism specialists, a visual impairment specialist, several occupational therapists and a physical therapist. I am guessing that we've had at least 15 college educated people plus a half dozen people with masters degrees working on the challenge of teaching my beloved boy to wipe his bottom. We even went to one pediatric psychiatrist with an MD/PhD for a couple of consultations. We paid him $300 an hour to basically show me how to make fancy charts.<br />
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Like an annoying, demanding relative who lives with you in your house, toilet training has always been with us. You just wake up and keep giving it attention every day, accepting that this is a part of your life. <br />
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But now, he's done it. My son wiped his own bum successfully all by himself. I'm not sure if we are yet fully living in the promised land of full toileting independence but we've experienced the fruits of our determination today. I'm proud and I'll blog it from the rooftops! In my little special needs parenting world, today hope prevails. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8386440672790322342.post-73104787186991197612016-05-27T17:55:00.000-07:002016-06-01T21:02:14.674-07:00Dead Hummingbird<div class="_1dwg _1w_m" style="padding: 12px 12px 0px;">
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Tough morning. Daddy is out of town. Mom forgot to set the alarm. We woke up just as Josh's bus was about to pull up at our house. I tried to keep my voice mellow and subdued but I think I ended up sounding serious and intense. "Girls, Mommy made a mistake and forgot to set the alarm. I really, really need your help right now!"<br />
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The girls picked up on Mom's stressed out tone of voice and scrambled out of bed. They were very impressive in this mini crisis getting themselves (and even helping Josh) to get ready. Someone got Josh a glass of water. The other one gave him a very crispy piece of toast. Teeth were not brushed thoroughly and we all had crazy hair but we were only 5 minutes late heading out the door with breakfast in our hands. It was a miracle of morning productivity yet it was clear that we were all adrenalinized and on the brink of snapping at each other any minute if anything were to go wrong. <br />
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Do you know what gave me the most energy in the midst of this flurry of activity? It was the fact that Josh smiled through the whole thing. My son's super power is that he does not pick up on other people's emotions. Yes, that's often a downside in social interactions but in moments like these, when negative or stressful emotions are swirling around, it can be so helpful. Josh woke up happy and was blissfully clueless that others were not. He was glad to be awake and no one was going to take that away from him. <br />
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Unfortunately, we opened the front door and found a dead hummingbird at our doorstep. I think one of the girls might have even stepped on it's little dead wing as she went out. Weeping ensued. It was like a little handful of cuteness and beauty had been crushed right in front of us. They demanded that we give it a proper burial right then and there. We three females all felt the spike of sad, negative energy in the moment. Aya. What to do?<br />
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"Girls, girls, please. I am begging you. Can we deal with this later?" I gently placed the hummingbird's corpse in what I called a "special resting place" under a purple bush in my front yard. <br />
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By some miracle, the girls were both able to choose to be redirected. Josh was already in the car, munching on an apple and smiling broadly for some unknown reason. At this point in my life it is such a beautiful thing that at least one of my children is pleasantly resistant to being infected by the negative energy or emotions of others. He does not get pulled into the panic or anger or sadness of the people around him. He is just where he is at. I find that sort of wonderful. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">I want to be someone who can smile and remain happy even when people around me are not. What is the secret to not getting sucked into other people's stress or negative emotions? Short of having autism, my guess is that the answer is to become a person who is deeply rooted in peace. I don't even know what that would look like but I want it. I want to have a spiritual and emotional force field to the destructive and dark vibes that swirl all around me in my day. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Sometimes life hands you a dead hummingbird on your front door on a day when you are already running late. Some days are just like that. The next time I have one of those days, I am going to picture my happy, apple eating, emotionally unfettered son and try to remember that I do not have to sink into heaviness and despair. It is possible to be free and happy even on chaotic, dead hummingbird days. </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8386440672790322342.post-12958949873669826082016-02-24T09:17:00.000-08:002016-03-19T23:05:29.880-07:00A Shared Joy is a Double Joy<div class="separator" style="clear: both; text-align: center;">
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Yesterday I took my kids through a drive-through car wash for the first time in their lives. It was, to Josh, a revelation. He was immediately deeply engaged by the experience, exuding a sense of awe that one might have when observing the Grand Canyon or the earth from space. The brushes going back and forth, the spray of the water, the squirting of the detergent, the vibrating rumblings of the machine that ensconced us, these things were absolutely enthralling to him. </div>
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This blog is called "shower heads and hairdryers" because those have been two of Josh's absolute favorite things since he was very little. Many autistic individuals have a special interest in unique things such as elevators, trains, or dial tones. Showers have always been the zenith of interest for Josh. He can spend a good part of a day drawing them. One year for his birthday, we printed out dozens of images of shower heads and hairdryers and put them up all over the house. It was better than a trip to Disneyland for my son. </div>
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As the carwash brushes whirled by spraying florets of water, I could hear Josh whisper with a voice of wonder, "shower head." </div>
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"Yes, Josh" I said. "It's like we're in a shower head. Like a car shower."</div>
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"Like a car shower," said Mr. Amazed. "Like a car shower." </div>
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For the next 10 minutes, Josh yapped happily about his experience, savoring the sounds of talking about what he had just seen. </div>
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"Like a shower. Like a brower. Like a shower head. Like a dower. Is it like a zower? Drower? "</div>
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After a while, Josh's annoyed sisters coudn't tune him out. "Josh, please stop."</div>
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But there was no stopping him. Home boy was on a roll. "Zower. Like a shower. Shower head. Brower. Would you like a dower? It's a car shower. A car brower." </div>
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"Girls, let him talk. He's happy." I said, taking in Josh's exuberance. </div>
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Yes, Josh was very happy and he wanted to share it, in his own way. And this filled me with joy, even though it was a little bit like being swallowed by a Dr. Seuss book. My son was sharing about something. He wanted us to share in something that he was experiencing. </div>
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When I serve in our church's nursery, one of the things that tears my heart a little is watching little 9 month babies point to things. Pointing is a sign of something very important in a child in terms of his or her neuro-social development. That child is wanting to share about something with another person. Pointing, eye contact, shared attention on another interesting object, these are things that naturally happen in a typically developing child, even at a very young age. It is a critical building block of learning and connecting. A child points to something then an adult says, "Yes, that's a train. It's Thomas the train. And this is Percy. Percy is green!" With a facial expression, tone of voice, and eye contact the child takes in the nuances of meaning. The experience of sharing attention is a magical portal for learning.</div>
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Most autistic children have a very low impulse to have shared attention. They are often content to experience things on their own, thus, their worlds tend to develop in ways that are not very connected to most people. This was true of Josh. I don't ever remember him pointing to things. He rarely wanted to share his interest or joy in something that was interesting to him. Shared interest has been, to Josh, a very, very thin thread in his developmental life but it's there. </div>
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Yet, in this moment, even in his ramblings, I could tell that Josh was trying to express to us that he had experienced something extraordinary: a shower in a car. I longed to milk this moment of shared attention and shared joy for all that it was worth. </div>
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This morning as I woke Josh up, I said to him, "We were in a car shower yesterday, huh, Josh?" He smiled a little smile and said, "Car shower". And I thought that there was a split second of eye contact as he said it. </div>
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A professor once told me that a shared joy is a double joy. And even though I need to be at work in a few minutes, I have to post about this moment because I want to double, triple, quadruple my joy. My son had a moment of joy and, in his own way, he wanted to tell me about it! It brings me such happiness to reflect on it, to relive the moment! ZOWER!</div>
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May you have a moment of wonder today and may you have the grace-joy-synergy-energy to share about it. </div>
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<br />Unknownnoreply@blogger.com2