tag:blogger.com,1999:blog-76368816810677886932024-03-13T00:32:05.834-07:00The Autism Chronicles: Life from the Middle of the SpectrumRunning for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.comBlogger173125tag:blogger.com,1999:blog-7636881681067788693.post-85479449002737281412020-02-27T13:36:00.000-08:002020-02-27T15:47:39.517-08:00The LoveI wish I could explain my love for this child and the pendulum swing it encompasses, so that you could feel it too.<br />
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2 weeks ago I thought my head was going to explode because I was So. Fucking. Sick. Of. Getting. Yelled. At. </div>
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I was composing a blog in my head during that tumultuous week and it was filled with swear words. I never did write it...I probably should have because I had to </div>
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swallow,</div>
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<span style="display: inline; font-size: 12pt;">swallow, </span></div>
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swallow </div>
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my emotions. There is no there choice but to KEEP MOVING FORWARD, but I was tired and Autism was officially pissing me off. </div>
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And, then, a week ago I got a glimpse of a grownup son. He sat at the table and we had dinner together, and then Dad joined us, and I thought <i>this is a cool kid</i> and I just can't wait to uncover his potential. My head was feeling a little less volatile, and my internal dialogue contained a few less 4-letter words.</div>
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Now this week my heart wants to explode. Evan’s on vacation and he’s having a great week. He joined me at the gym yesterday and he LOVED it, and today he’s sporting his new Vans and they are so stinking cute, and we went to a skateboard park and he skated, and he watched some big kids do some tricks and named them all because he’s been watching videos to study skateboarding skills. He's spent a huge amount of time with me every day this week, and this handsome, sweet boy is just melting my heart.</div>
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If I could bottle the heart exploding emotions to drop them in my veins for when my head is ready to explode, I just might survive this ride.</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-51280878934923780052020-01-31T16:53:00.000-08:002020-01-31T16:53:08.242-08:00To The VillageMy Village was very large this week.<br />
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I needed help from others; others needed help from me.<br />
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I find myself refreshed tonight in a way I haven't felt for awhile.<br />
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The past 1 1/2 years have been challenging. It's not autism that has made it that way, though there have been tough autism moments. It's life. It's life with hills and valleys that no one really tells you are coming, but even if they did, it's the new trail you must blaze to find your way up and down to the other side. I <i>think</i> there is another side...I guess I don't even know for sure that there is. I'll tell you if I get there.<br />
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I do know that we are often ill-prepared for the avalanche of conundrums that many of us find ourselves in. I know that my village, woman my age with children who are the square peg in a round hole, are fraught with enough GUILT to sink a ship...<br />
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...did we do enough<br />
...I should have done more<br />
...what more can I do<br />
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and, many of us have <b>teenagers</b> (in bold for obvious reasons if you have a teenager, and if you don't then you know nothing - which is exactly what you know if you have a teenager)<br />
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and, our parents are sick and dying<br />
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and, we have to learn how to teach our teenagers to drive and not kill you<br />
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and, we have to get ready to send said teenagers to life beyond our walls and not be assholes<br />
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or, maybe someone will never leave, or drive, or have a job<br />
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and, someone is having suicidal thoughts<br />
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and, "can we get a dog?"<br />
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and, can't we skip our routine just <i>once?</i>, I promise it won't be that hard<br />
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and, menopause is right around the corner and no one gave us the heads up that is was coming<br />
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... and one day we are thinking "HOW THE HELL DID WE GET <i>HERE</i>".<br />
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So, I leaned on my Village; my Village leaned on me.<br />
By leaning, I, of course, mean complaining. In truth, though there was complaining, I mean sharing resources and advice, laughter and fear, coffee, lunch, a pedicure, a phone call.<br />
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An introvert by nature, I can go a long time without talking to a friend; this week, for some reason, was the antithesis of that. It turns out that it was just what I needed.<br />
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My advice for the week? Find your Village.<br />
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And, many, many thanks to mine <3.<br />
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<span style="font-size: x-small;"><i>I love the idea of ordinary woman</i></span></div>
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<span style="font-size: x-small;"><i>making extraordinary sacrifices.</i></span></div>
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<span style="font-size: x-small;"><i> </i>- Megan Chance<i>.</i></span></div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-30610042845181615082019-12-11T16:13:00.000-08:002019-12-11T16:13:25.578-08:00A Decade plus OneIt's been another trip around the sun for this Little Man.<br />
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This year has been quite extraordinary.<br />
And, hard.<br />
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Evan's academic progress in the last year has been nothing short of amazing. He has gone from a struggling reader to being able to read well above grade level. He is a constant stream of facts and his knowledge of WW I and WW II far surpass my own. I wish he could have met his Great Grandfather, WW II hero...they would have had a lot to talk about.<br />
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Evan's flexibility around leaving our home has improved significantly, as has tolerating people in the house. We were able to host 2 medical students from Operation House Call (a program that pairs students from BU and Tufts, as well as Allied Health students from Simmons University) for the first time in 2 years AND he even spoke to them :).<br />
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Evan wants to know everything about sex. Everything. EVERYTHING. <span style="font-size: large;"><b>EVERYTHING.</b></span><br />
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<span style="font-size: large;">E.V.E.R.Y.T.H.I.N.G.</span></div>
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This has been quite the experience for me. Oh, yes...only me. No, he isn't talking to Dad about this. We are a LOVE is LOVE family, so this isn't just a "get married and have sex to procreate" type of conversation. There is SO much material here and I am dying to write/talk about it, but <i>no one talks about this stuff!</i> I'll hold back out of respect for Evan, but I'll tell you that having a conversation about these things with someone who is not embarrassed and has no social pressure influencing his thoughts is fascinating (I've had to check my own embarrassment at the door more than once). </div>
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Pre-adolescence, as everyone knows, is fraught with parenting perils. <b>Here is another that no one talks about: mental health.</b> As I've struggled to be open about sexual health, so too have I struggled to discuss mental health. Out of necessity we've had to talk about how changes happen in the brain as well as in the body during adolescence, and that sometimes kids with autism need a little extra help keeping their brains healthy; he understands this and asks for help when he needs it, which I am infinitely grateful for. Help for parents, who often carry this burden in silence, is harder to ask for. </div>
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Mental health is probably a blog for another day, so how about a few more highlights:</div>
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<li>Evan ran his first 5K, which made this running Mama SO proud!!</li>
<li>Evan ate with us at the dinner table for 3 nights in a row, which is definitely a record.</li>
<li>In October, Evan bounced from the car with an unprompted sing-song "Bye! Have a good day, love you!". I thought I was going to melt on the spot. If you've read my blog in the past, then you know we've trained him to say "love you", and this was the first time he said it first before he went about his day. Amazing. </li>
<li>We're working on life skills, Evan and I. He asked to learn how to do laundry and while his desire to help lasted one day, it was a start. I have him order his own food when we grab something to eat on the way back from school, a process that causes me both pride and stress; to watch him miss cues from other's body language and social nuances that most pick up on their own remind me of how much direct teaching he will need to be successfully independent in life. If I think big picture I, honestly, get exhausted, overwhelmed, and worried. Therefore, I'm taking each effort at independence as one more in his bag of tools and celebrate the fact that I can help teach him to access the world. </li>
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There will be no Happy Birthday song, no parties, no celebrations for the birthday boy, and that's the way he likes it. I <i>think</i> this no longer makes me sad, but there may be a little tug on my heart strings. There were cinnamon buns for breakfast, a cookie cake upon returning from school, and sushi for dinner (and he ate with us at the table! I'm not sure he realized as he picked out the cucumber from his roll, he left in the tobiko!) A few computer gifts were thrown in there too...birthday success!</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-63095871797884323642019-10-01T07:11:00.000-07:002019-10-01T07:11:22.397-07:00Is It Survivable?Like most people, I both love and hate the power of social media. This morning, it connected me to someone in the autism community and I was reminded of some of the reasons why I started this blog and, more importantly, why I refuse to be quiet in the corner of autism isolation.<br />
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<i style="text-align: start;"><b>"Maybe I just need to know this is survivable."</b></i></div>
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The power in this statement took my breath away. It took me right back to a myriad of dark moments, playing in my head like a slide show, complete with the visceral feeling of despair that I felt when things were bad. The feeling that I can't shake to this day, that returns in a fury when things aren't going well; it's imprinted deep in my brain at this point, ready at any moment to jump in as the precursor to my more productive emotions.<br />
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Of course, I didn't respond by stating how hard it was to read those words. Instead, I moved quickly to action, sending some quick words of advice and places to look for resources. It is survivable, I said, and my new friend was quite appreciative.<br />
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However, I also should have said this...<br />
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There will be more days that do not seem survivable. Those days may last for weeks or months. But, you will also know love so deep that you'll wonder how you'd survive without it. You'll marvel at milestones met that those with typical children often overlook; you'll appreciate the work it took to get there and be infinitely grateful for every positive foot forward. You'll find a Village, one that you won't know how you lived without before you found them; they will laugh at the most inappropriate things that will happen to you, because without that laughter you might fall back into despair. You will learn from those ahead of you on this path, and you will guide those behind you. You will find that the path is far from straight and narrow - it is wide, and curvy, and sometimes goes backwards, but it DOES even out to let you breathe now and again.<br />
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Autism will change you. You will see the road so easily traveled by others and wonder why you couldn't have a lane there too. You will think of the future through a different lens and it will be uncertain. Autism will define you some days, but some days it will not. One day, hopefully, you will see all the ways that autism, despite the ugly times, has made you better.<br />
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No one will understand this better than another autism family. There are a lot of us, though, and together we can make the future bright enough to light up those dark days.<br />
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Relentless Forward Progress. The Village has got your back.<br />
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<i>Sometimes when </i></div>
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<i>you're in a dark place </i></div>
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<i>you think you've been </i></div>
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<i>buried, but actually</i></div>
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<i>you've been planted.</i></div>
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- Christine Caine</div>
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<br />Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-56388964799223527972019-08-08T16:27:00.000-07:002019-08-08T16:27:53.506-07:00The Sibling StruggleI had not had a failed outing with my son for a long time. Too long, it turns out, and it was time for my fate to change. I should have seen the writing on the wall: the midnight wakening, the gut that wouldn't give up the goods, the mouth that needs new food and the brain that doesn't know what that food is.<br />
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I made it to the parking garage, but that was also a sign: it was full. A full garage means large crowds, and I had my first thought that this day wouldn't end well.<br />
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A poorly timed joke by my daughter was the fuel that finally lit the fire, and as I was looking for a parking spot there was an escalating cacophony of unkind words and hurtful phrases. I parked and then there was SCREAMING...<br />
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...and it was all <b>HER </b>FAULT<br />
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<b>HER </b>FAULT<br />
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<b>HER</b> FAULT<br />
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As I was pulling out of the parking spot to turn around for home, I wondered if there was any possible way she would come out of this unscathed.<br />
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There was not.<br />
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Her first tears fell about 3 miles into our drive home. Silent, but for the sound of some sniffles a few minutes later. My tears remained swallowed, taken in by my heart, which hurt so bad.<br />
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35 minutes later, it was still <b>HER</b> fault, and he added that I was a liar for saying that it was not her fault. There were more silent tears.<br />
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Finally, at home, with some distance from my son, the heavy crying came. I was glad for it. We all need to be angry, and sad, and grieve so that we can move to laughter, and love, and eye rolls, and "next time we'll try this", and "let's flag this for the therapist" or it eats you up inside.<br />
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There was no success on this day, only a salvaging of some happiness helped along with ice cream and shopping while someone stayed behind to cool his heels and deescalate. The heart that needed intervention the most was not his.<br />
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I hope she reads this when she's older. I hope she knows that her parents know her job is SO hard sometimes. We see her sacrifices. We see her frustration, and we see her love. High highs and low lows are felt by everyone in a house (or in a car), and as much as we'd like to shield those lows from our other children, we will sometimes take risks in living and sometimes we will fail. Those failures will hurt, but they will etch her compassion and empathy that much deeper.<br />
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We will patch up today's heartbreak and dry today's tears, and we will do our best to, in good times, double knot those sibling ties that bind so that they will always carry her when times are bad.<br />
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<img alt="Image result for special needs sibling quotes" src="https://www.storemypic.com/images/2016/11/12/sally-phillips-the-siblings-of-special-needs-children-are-quote-on-storemypic-5ea7d.png" /></div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-39078678655750388572019-03-03T18:25:00.001-08:002019-03-03T18:29:42.372-08:00Autism hasn't made me cry for awhile, for months maybe, and that is definitely a record.<br />
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I found myself really, really close to tears the other day during a rare, but fierce, tantrum. It was a result of an intense emotion...the need to leave the movie theater before the credits rolled (they make his body feel weird) but I insisted we stay and clean up spilled popcorn. Then, in the car, he screamed at me and I will not tolerate that, so I sternly told him to stop yelling at me. He continued to cry and stayed mad at me for a long time. He called me a traitor under his breath, and whispered it when I walked by him later at our house. He turned his back on me while I said I was sorry for making him mad (though I did not apologize for my actions, only that I was sorry that my actions upset him).<br />
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I left him to brood. This isn't my first trip down tantrum and meltdown lane. He was safe, I was safe, and he needed time to calm down and work through this. I decided that I would speak to him again if I heard him call me a name and tell him that it wasn't acceptable; I mentally braced myself for the minutes or hours that being stern with him, again, would set us back into the spin of the tantrum, but I needed to set this boundary.<br />
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And, this was my low point. I hadn't been here for a bit, and my tough spots had worn off. This was the autism I don't like - the part that holds my son hostage in it's irrational grip.<br />
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Then, I heard, "Mom, I'm not mad anymore".<br />
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And, "Do you have any smoothie left? Could you make me some?"<br />
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Finally, <b>"I'm not comfortable with saying I'm sorry, but that is what I was trying to say."</b><br />
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It's true that when you witness developmental milestones in a child who is delayed, that are infinitely more meaningful. It's the small things that you don't even know you're missing until they present themselves, like the first time your child hums, or says he's hungry, or dresses himself. Or, the first apology. The first remorse after a meltdown. The first possibility of control.<br />
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My tears receded and smile took their place.<br />
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A kiss on the head. A spoken "thank you for apologizing".<br />
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A smoothie.<br />
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<i>Relentless. Forward. Progress.</i><br />
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<br />Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-70803347580513582552019-02-06T16:40:00.000-08:002019-02-06T16:40:13.176-08:00Car ConversationsHave you read this blog I wrote in 2017? <a href="https://theasdchronicles.blogspot.com/2017/03/when-windows-open.html">https://theasdchronicles.blogspot.com/2017/03/when-windows-open.html</a><br />
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We've seen Evan's window gradually opening more often and staying open longer. Today was a perfect example, as I was privy to Evan's amazing mind both to and from school.<br />
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This morning, after a prolonged silence that is normal for our commute, Evan said suddenly, "Mom, wait! You know when you were talking about Grandpa in that school and you said that you wouldn't have a party for him when he turned 50...what did you mean?".<br />
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O.k., so...WOW...he's asking me about the eulogy I gave for my Dad at the University where my Dad spent 41 years teaching. Last September.<br />
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After I explained the story he was referencing (and, for the record, my Dad didn't <i>want</i> to celebrate his 50th birthday), I told Evan (and this is the truth) that I had also just been thinking about my Dad.<br />
"Why do you think Grandpa is on our minds?", I asked Evan.<br />
"Maybe because he is watching me.", Evan answered.<br />
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Sit with that for a minute. I had the opportunity to sit with it for several, with a smile on my face, as Evan and I resumed our silence for the remainder of the drive to school.<br />
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Now, welcome to the afternoon, where Evan entered the car winded and pink cheeked after a quick run around the playground before dismissal. We went through our normal "how was your day" routine, which sometimes gets an answer and sometimes doesn't. I think there was a little chit chat, but I can't remember what we talked about, and then we fell into our silent routine a short time into our drive.<br />
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Then, from behind me I heard, "Mom, I learned that if one person has blue eyes and another person has blue eyes, their baby has a better chance of having blue eyes. <b>But, if you don't have autism and Dad doesn't have autism, then how do I have autism?</b>"<br />
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O.k., so...WOW...what an amazing question (and stellar application of his new found science information).<br />
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I hesitated ever so slightly, cautious about how I would answer this question. I explained that scientists think that the cause of autism is likely genetic, but that there could be environmental influences (bad chemicals in the Mom's body as the baby grows, is how I explained it), and Evan was quick to jump in and say that he believed it was genetics. Then, of course I had to tell him that we had a genetic study done and we found that he was missing part of a chromosome and he was SHOCKED. "WHOA", he kept repeating. "I'M MISSING GENES?!"<br />
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Here is a summary of some of his follow up questions and thoughts:<br />
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<ul>
<li>Can I get them back?</li>
<li>How come you didn't tell me this?</li>
<li>I think I would have understood this when I was 9. </li>
<li>You should have told me on my birthday.</li>
<li>What does missing part of my genes do?</li>
<li>Is XXX also missing his genes? Maybe we're missing the same ones.</li>
<li>I'M MISSING 169,000 BASE PAIRS?? (with no real appreciation of what this means, only that the number is huge)</li>
<li>So this is why it takes me longer to do my work.</li>
<li>What happens if you have no genes? What happens if you have too many?</li>
<li>My science teacher is not going to believe this!</li>
<li>I'm not sciencey, but this is WOWing me...</li>
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There is so much material here and I can't possibly do it justice. I'm not even sure if this is interesting to anyone beside Jayme and myself, but I just have to memorialize it.</div>
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This kid...</div>
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...this kid...</div>
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...there is so much there, and sometimes I forget. While I'm busy talking about his life, he's busy living it, and he <i>wants</i> to know the stuff that makes him tick. This afternoon's conversation was me pushing his window open just a little for him, and telling him this is who he is, and isn't it amazing? I think he thinks it <i>IS</i> amazing; and, he's thinking, and thinking, and thinking, and I'm likely just nicking the surface of those thoughts with my rudimentary memory of science that my 15 year old has to help me with.</div>
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It's now the end of the day, and I can tell his brain is tired. He's quite now, and back to the solitude he so often prefers. However, if you find his 169,000 base pairs, he would like them back.</div>
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Hope your watching these conversations, Grandpa. <3</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-47987957440894299572019-01-15T18:08:00.001-08:002019-01-15T18:08:07.893-08:00So, Grandpa died.My Dad died on August 30, 2018 at the age of 73. Though I've lost all my grandparents (and was present for 2 of their deaths), and a couple of friends, I was ill prepared for the depth of grief that accompanies losing someone who is woven into your soul. This piece, however, is not about me; this piece is about Evan and the beauty of his relationship with my Father and with death.<br />
<br />
There is a cemetery on the family farm where I grew up; it holds 5 family members and a family friend, all buried by my Dad. Now, it holds my Dad too. The kids and I have spent a lot of time around the cemetery as it's hard to not walk by it as you peruse the farm. We saw it when we cut down Christmas trees with Grandpa, when we walked up the hay fields and into the woods with Grandpa, when we visited the honey bees with Grandpa, when we drove in the 4 wheeler with Grandpa, and when we sat on the rock that would become a headstone (for Nana and Grandpa) with Nana and Grandpa. We smiled and we laughed and we never thought those days would pass so quickly.<br />
<br />
The cemetery took an early and strong hold onto Evan; from the time he could walk up the grassy hill by himself he was fascinated by his family that lay in the ground. I always indulged his questions and talked openly and honestly about death and dying, much like how I was raised. If you've followed my blog from the beginning, no doubt you've read my words and seen my pictures that capture some of these moments.<br />
<br />
My kids knew my Dad was dying. They knew his body was failing and his mind might forget them. They listened to me advocate for his care and brainstorm with my family ways that we could move forward and best honor his dying process. The day we knew his death was imminent, they held me while I cried. Evan, ever on the periphery, took it all in. He asked many questions...is Grandpa dead yet?...is Grandpa in pain?...does Grandpa know he's dying?<br />
<br />
Finally...can I see Grandpa's dead body?<br />
<br />
<i>Yes. Yes, Buddy, you can.</i><br />
<br />
And, he did. He saw Grandpa, and we sat with him for a long time. We saw that Grandpa looked peaceful and happy. Evan gave him a rock and a check for 100 million dollars to spend in the afterlife, with instructions to spend it wisely because once it's gone, it's gone. He watched us close the casket and hugged me when I cried. Evan, who has never, not once, shown me affection when I'm upset, hugged me. In fact, he was the first of the Grandchildren to try to get to my family huddle and was held back by my niece.<br />
<i>No, </i>I told her, <i>let him come.</i><br />
<br />
He asked me if he could speak when we put Grandpa in the ground.<br />
These were his words:<br />
Grandpa was fighting with honor because he knew that honor was the most lovable. But, but maybe we all are thinking this can't be real, that Grandpa's not dead, but he is and we just have to accept it. But, um, you may believe the circle of life where his body is still there but re-spawned as another being but sometimes that's not true and he's dead for a honorable reason because not much people, well some people don't serve people with honor and we all did because we put our love in Grandpa and let's hope that paid off. But, deep inside Grandpa is still in our heart which that way he's still alive in our hearts.<br />
<br />
In the weeks and months that followed, Evan talked a lot about my Dad, wondering what his body looked like and if he had spent all his money. He told me he missed Grandpa, and that he, too, wanted to be buried on the farm. One car ride home, at an intersection I'll never forget, he said to me, "Grandpa never forgot us. We are so lucky."<br />
<i>Indeed. We are so, so lucky, </i>I answered between my tears.<br />
<br />
In November I found a crumpled not on the ground near our coat closet. It was from Evan, written, I'm guessing, in the day or two before my Dad died. It said:<br />
Dear Grandpa<br />
If you are dead<br />
i miss you you done<br />
so much for me and<br />
how can i return<br />
the favore.<br />
Please stay alive. Love, Evan<br />
<br />
What I learned through this experience is that somehow, somewhere in the blink of the years that passed us by, Evan forged a relationship with my Dad that I didn't know was there. I would guess that Evan has a lot of these relationships...that behind his stoic demeanor, his stilted speech, his rigid rules and restricted interests, there is a depth of love and connection to others that just <b>IS</b>. He loves those that love him, but by his own rules and bounds, which clearly run so deep. What a heart this kid has, if you look for it. Clearly, my Dad found Evan's heart, and I hope he stays there as we learn to walk this earth without him.Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com2tag:blogger.com,1999:blog-7636881681067788693.post-79792142396601458162018-12-11T02:57:00.000-08:002018-12-11T02:57:42.076-08:00Autism, The First DecadeIf only Evan had left my womb holding a sign that read, <b style="font-size: x-large;">I have autism</b>.<br />
<br />
Born in a rush, he's been developmentally behind ever since.<br />
<br />
If only the deletion of his RBFOX1 gene came with a visible feature like a blinking strobe that read, <b style="font-size: x-large;">WARNING, WARNING</b>, I could have prepared myself earlier for the hard times ahead.*<br />
<br />
And, there were hard times. There were a lot of tears, and bruised foreheads, and bloody noses. There were ruined books and carpets with threads pulled up in rage. There were mean words and dangerous car rides. There were only liquid foods, only crunchy foods, only meat, only broccoli, only popcorn; there was no food. There were headaches, and stomach aches, and sensitive ears, and sensitive skin. There were only shoes 24/7, only pajamas, only sweatshirts, only costumes, only soft pants. There was speech training, and sleep training, and potty training, and therapists, and therapists, and therapists. There was so much hard work.<br />
<br />
There was so much <b>LOVE</b>.<br />
<br />
There was laughter. There was amazement and pride. There was a village. There was a depth of parenting that I hadn't previously known existed.<br />
<br />
What will the next decade bring?<br />
There will be adolescence. There could be mood disorders. There might be driving, and jobs, and college. There might never be any of those things. There will be special needs estate planning and guardianship decisions. There may never be an empty nest.<br />
<br />
There will be more laughter, more tears, more wonderment, more heartache, more accomplishments, more struggles.<br />
<br />
There will be so much <b>LOVE</b>.<br />
<br />
I've taken a lot of pictures over the years to capture AUTISM, our slice of it, in good moments and in bad; for the first time, I'm sharing some of these pictures publicly. There are shoe pictures (sadly, I don't have pics of him wearing shoes in the tub), and pajama, sweatshirt, and costume pictures. The pictures of him on me are all moments that capture the end of a meltdown (and often those would end in a nap) or of him shutting down; these are a fraction of the times I've held him. I'm glad I have all these memories, as they mark the progression of our path in life.<br />
<br />
I hope that when you see these picture, you see our <b>LOVE</b>. For, I always tried to smile...I was, and remain to be, thankful for the calm between the storms, for the privilege to be Evan's safe haven, for the beauty of his amazing mind.<br />
<br />
Happy Birthday, Buddy.<br />
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<span style="font-size: x-small;">*(</span><i style="font-size: small;">The RBFOX1 gene deletion, not common in the general population, has only been associated with neurodevelopmental disorders such as autism, and requires more research to prove it's causal effect. Whether this gene deletion caused Evan's autism or not, knowing that autism was a possibility earlier in his childhood would have been quite helpful; the need for continued research, and our experience thus far, is the reason that Evan remains an active participant in appropriate medical studies.)</i><br />
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<!-- End WOWSlider.com BODY section -->Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com1tag:blogger.com,1999:blog-7636881681067788693.post-47499834035027352522018-11-26T17:07:00.000-08:002018-11-26T17:07:08.359-08:00Teaching Language, Part 2I made a new friend a couple of weeks ago; she is an Autism Mama, which is what originally connected us, but she is also a fierce advocate and autism champion, and that is what will bind us. She and I had coffee and talked for, no exaggeration, 2 1/2 hours (and I had to force myself to leave as we could have talked hours more); it was a case of verbal diarrhea for me, driven in part because I wish I had someone to talk to about autism when Evan was 3. He wasn't diagnosed until he was 4, mind you, but those early years for me were so hard and looking back on that time, I realize that I now have A LOT to say.<br />
<br />
We talked mostly about school and therapy, but one subject came up that has been on my mind for several months. The topic is something I originally blogged about in December of 2014, but it's one that I still think of often, and that is being called Mom.<br />
<br />
To set the stage, I recommend reading my original blog about this here:<br />
<a href="https://theasdchronicles.blogspot.com/2014/12/teaching-language.html">https://theasdchronicles.blogspot.com/2014/12/teaching-language.html</a><br />
<br />
About a month ago Evan called Jayme, "Daddy". He quickly corrected himself and said, "Dad". Jayme wasn't in the room and I never even mentioned it to him, so I don't know if he feels as strongly about this subject as I do. Anyway, Evan was talking about Jayme and hearing that quick reference to "Daddy" took me immediately back to the feeling of, in essence, being robbed of a part of my parent identity. I'm admittedly more sensitive to this concept right now because with the death of my Dad, went a huge chunk of my "daughter" identity (he called me Grinch, and I will miss hearing that from him until the end of my days); it's different in this circumstance, maybe more frustratingly so, because the loss of being called Mama (pronounced Mumma) was avoidable.<br />
<br />
Interestingly, also this fall, Evan decided to start referring to my Mom, affectionately known as "Nana" to her grandchildren, as Grandma. He has never called her this to her person, but when he talks about her, that is what he calls her. Evan tells me that it is easier for him to say, but I'm not buying it; we call Jayme's Mom "Nana Deb", and that hasn't been problematic at all. My theory is that when Evan talks about my Dad (known as "Grandpa") at school, my Mom is automatically referred to as "Grandma". I know there was a lot of talk about grandparents after my Dad's death, and Evan remains quite free in talking about him, so while I can't say for certain that this is how "Grandma" came to be, I feel fairly confident that this is the case.<br />
<br />
Back to my friend...so, I said to her, "has anyone ever asked you what you want to be called?" and went on to explain why I was asking. I noticed her face fall ever so slightly. "No.", she said. "No one has ever asked me, and I've never thought about that." I didn't like the way this conversation made me feel, I'll be honest. I didn't like being the person that said <i>someone else is going to define your role as a parent for your son, and they are going to do it without your permission.</i> But, that is exactly what happens.<br />
<br />
Look, I've never claimed to have the answers to most things; parenting, on a good day, is an enigma and my autism journey is mine alone. I've relied on other people to teach Evan how to sleep in his bed, how to use the potty, how to tie his shoes, how to have a conversation. But, maybe, just maybe, this is where I can help others...this idea that a parent should drive the language that is used in their home. Evan has spent hundreds of hours in therapy, at one point 6 days a week, and no one ever asked me what I want to be called. No one. Teachers and therapists - you can do better, and you need to be the ones that drive this conversation. I spent my days hoping we wouldn't end up in the ER with a concussion or broken nose, not thinking about what my parent name was...until it was gone.<br />
<br />
I ended my blog in 2014 wondering how long this would sting for, this loss of my parent identity. I am now, admittedly, used to being called "Mom" by Evan, but 4 years later - as I watch in amazement as his conversations progress and his stuck thoughts become unstuck - it still makes me sad.<br />
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-15507513063512912792018-11-26T13:01:00.002-08:002018-11-26T13:01:53.043-08:00Words that StickI was just driving Evan home from school and he said to me, "I really want to tell you what's in my backpack, and I can see the word in my head but for some reason I can't get it out of my mouth".<br />
<br />
"Can you say the word in your head?", I asked.<br />
<br />
"My brain is all foggy right now, so I can't talk in my head.", he answered.<br />
<br />
<i>Fascinating</i>, I thought to myself. I know he gets things stuck in his head, but he's never been able to verbalize so many other things at the same time. He was speaking so clearly, and yet there was something that he couldn't say; I would have had no idea if he hadn't of told me so.<br />
<br />
I waited, quietly despite my curiosity and desire to start guessing what was in his backpack, for several minutes. I then asked, "Is the word still stuck?".<br />
<br />
One beat went by.<br />
<br />
Two beats.<br />
<br />
"No," he said, "and it isn't one word, it's lots of words. First, we watched a robot land on Mars today."<br />
I interjected here with some questions about this, which he answered. He went on, "And, I have a group picture from school in my backpack."<br />
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There went the backpack mystery, but with it came a whole new appreciation of entire conversations that my never happen because they get stuck in Evan's head and left unprompted, may never come up again.<br />
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Gosh, do not underestimate the power and knowledge in an autistic mind. Be patient, and these kids will knock your socks off.Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-17639793130069668632018-10-15T16:11:00.001-07:002018-10-15T16:13:06.608-07:00No Talking Mode<div style="text-align: center;">
<b>"I'm in no talking mode."</b></div>
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"I'm in no talking mode.", Evan told me in the car today and it's music to my ears. 5 years after introducing our initial strategy to politely let someone know that he doesn't feel like talking, which started with this card,</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmQmQLSEcVPOXKW10NqmbDVNvkzzVGoPDQ4aCuRsDLddDL4U8y6HrDHD6Kz9cdjvAkIdFfAdEg4whxGYTUWQrxfLfKKhwfmQPAM6nQ0u-CXSI72yeV2y0D-ktxGuHbVck-YlyvqLpljJOS/s1600/FullSizeRender+%25288%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmQmQLSEcVPOXKW10NqmbDVNvkzzVGoPDQ4aCuRsDLddDL4U8y6HrDHD6Kz9cdjvAkIdFfAdEg4whxGYTUWQrxfLfKKhwfmQPAM6nQ0u-CXSI72yeV2y0D-ktxGuHbVck-YlyvqLpljJOS/s320/FullSizeRender+%25288%2529.jpg" width="320" /></a></div>
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he has successfully used the "no talking mode" statement twice in the last few days. By successfully, I mean calmly and in a civil tone.</div>
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I still have this card, by the way, tucked in a purse. I haven't yet been able to part with it, which seems silly as it is just a printed piece of paper laminated on an index card. When I see it, though, I'm reminded of how far we've come since the day we used it for the first time. </div>
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So far.</div>
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And, yet, not far enough. I still live under the fear of what that time was like. I still feel stress when we leave the house for anything other than school, because those epic meltdowns lurk right around the corner. While they are fewer and farther in between, I haven't yet lost the feeling of living on the edge of a tantrum. I wondered today...will I ever lose that fear? Will there be a day when I can drive in my car and not worry about being yelled at for asking if he is hungry? </div>
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Maybe I don't want to know. More importantly, we won't know until we actually know, right? If you had told me 5 years ago that one day this strategy would work, I probably would have started crying thinking about how far 5 years was from that day and wondering if I had the strength and patience to wait that long.</div>
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There are articles about PTSD in special needs parents, and maybe I have some of it. I certainly understand it and how it could happen; we lived for years under constant stress because of Evan's behaviors. Now, I don't know how to let that go - I'm so conditioned for something to go wrong, and we still have moments of uncontrollable behavior which take me quickly down a rabbit hole of dread even though I know he will regain control. My fear limits us, for sure; I prefer the safe path almost every time with Evan because I hate the darkness. Occasional I'll go outside my comfort zone, recent vacation to France as an example, and then I know I don't want to do it again for a long time (I've vetoed any big travel for at least another year). </div>
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Back to the car...the car, Evan, and I have had a rocky relationship since he was 2. It's where I first realized that he wasn't talking to me. He had words then, but no conversation, and I would find myself talking to him and asking him about his day with never a response, until one day I just stopped trying. He would scream if we were on a bumpy road because the jostling was too loud. He has thrown things at my head while I'm driving. He has hit the side window so hard that I thought it would break. He has thrashed about in his seat, banging his head into any surface he can connect to with such force that I thought injury was imminent. I have considered pulling over more than once because the 2 mile drive I was on from school to home seemed so unsafe, I was unsure we could make it.</div>
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How do you recover from this? How do I not feel afraid when he starts screaming at me to <b>BE QUIET!</b>? I don't know, I'm clearly not there yet. While I may no longer cry my way through it, my gut still clenches in remembrance of those truly hard days. </div>
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But, today...</div>
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Today it dawned on me - and, sometimes that's how it happens, these AH-HA moments break through the murkiness of the daily grind - that 5 years of reminding Evan that he doesn't need to yell, that he can just tell me that he doesn't feel like talking, is actually working. And maybe 5 years from now, even if he does yell, that pit in my stomach will not be so prominent and when I realize it, I'll look back and see, again, how far we've come.</div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-85111322286507839902018-09-21T15:58:00.001-07:002018-09-21T15:58:55.001-07:00Look at Autism<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Ndl6NWEHMb6DB4MfbCqROP4sq90GjfrFA5LKdHE0K3YS4sSMIK9e-P0MwZADLxxCUl2VBWohzHIYV-ThrKZnznBsr4oW7AHIdt4jPAiT9uzgkOFt6-CQCDyT17SJW3WKDws7I28Gd437/s1600/234cc89cbf59d032b82162781e414c51.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Ndl6NWEHMb6DB4MfbCqROP4sq90GjfrFA5LKdHE0K3YS4sSMIK9e-P0MwZADLxxCUl2VBWohzHIYV-ThrKZnznBsr4oW7AHIdt4jPAiT9uzgkOFt6-CQCDyT17SJW3WKDws7I28Gd437/s320/234cc89cbf59d032b82162781e414c51.jpg" width="320" /></a></div>
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I'm working on a blog post about my Dad's death, but I can't finish yet. The words aren't there, but they will be soon.</div>
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In the meantime, I saw a picture today on Facebook of a rock, with the above saying on it. It's beautiful, right? I think of Evan when I read this, and I'm so thankful that I'm his person and that his family loves him so much. I worry, of course, about the times when he doesn't have us around him and wonder if people can see his beauty. I think about how crazy our world is right now, and how easily he could be overlooked, or misunderstood, or unwelcome. I think about how uninspired I am right now to march forward on my fundraising promise to run for autism once a year, and how this year my heart is so heavy and the past few weeks have been so hard, and I've asked myself frequently (as I'm walking on my long runs - something I never used to do), <i>why am I doing this</i>?</div>
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But, this is the reason, is it not? <span style="font-size: large;">Look at Autism with your heart. Your eyes might miss something.</span></div>
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Jayme and I have talked recently about Evan's language and about how autism is often seen as binary: you're verbal or you're not. Autism is so much more complex than that, of course; any parent could tell you that. I think, though, of the many times over the years I've witnessed how little people take that into consideration when dealing with him...his language can be simple, or hard to follow, or totally off kilter, and so few folks stop to think about what he is trying to say. If you could peel back that first layer of broken language, what might you find lurking underneath? I don't always know either, but sometimes Evan will say something that will knock the wind out of me - it's complex, and mature, and maybe it's simple in language but it's so very deep in thought.</div>
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When someone is non-verbal, there are many tools to help that person speak. Have you ever thought about what the tools are when someone IS verbal but cannot access all the words they need? Some people do, in fact, think about these things (therapists, family), but not most people. So, I'll add this thought: <span style="font-size: large;">Listen to Autism with your heart. Your ears may miss something.</span></div>
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Last week and I had an open house at Evan's new school and I heard words, from multiple teachers, that I've never heard before. <i>Evan is SMART. Evan is VERY SMART.</i> Can you imagine knowing that your child has a capacity far beyond what is being assumed of him, but being unable to have the people around you know how to tap into that? It's heartbreaking. I see hard struggles ahead, but now I also see hope. I see <span style="font-size: large;">Look at Autism with an open mind. You're preconceived assumptions may miss everything.</span></div>
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I hope you see it too.</div>
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********************</div>
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For anyone interested in what I'm running next, </div>
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or you would like to make a donation, </div>
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please go to: https://www.crowdrise.com/o/en/campaign/oar-2018-nyc-marathon/gretcheneastler-fishman<a href="https://www.crowdrise.com/o/en/campaign/oar-2018-nyc-marathon/gretcheneastler-fishman">https://www.crowdrise.com/o/en/campaign/oar-2018-nyc-marathon/gretcheneastler-fishman</a></div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com11tag:blogger.com,1999:blog-7636881681067788693.post-29034247654431823482018-08-10T17:51:00.001-07:002018-08-10T17:51:29.680-07:00European VacationHere's my big parenting revelation of the moment: you're worried if you travel without your kids, and you're worried if you travel with them...different worries, both equally debilitating.<br />
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We recently returned from a trip to France and I've been thinking for the past couple of days how best to sum it up, and I'm not sure I can do a good job of it; a good start would be to say that it was amazing and stressful all at the same time. And, hot. European heat wave, after all, and that's no joke. Have I written recently that Evan only wears pants? We can blame that one on a poorly implemented ABA intervention in preschool when they tried to get him into shorts during summer school, an intervention that still haunts him; we assumed that his pants wearing was mainly a sensory issue, but if you ask him, he is quite clear that it is a result of being forced into shorts when he was younger. If you're an autism parent and have read the pros and cons of ABA, you'll understand our dismay at realizing, years later, that ABA brought some great failures; the great successes are no less meaningful, but knowing that your child felt tortured with your consent - in order to wear shorts, and, seriously, why did I care so much about that (because I was worried about heat stroke and Evan's discomfort) - is a hard pill to swallow.<br />
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Anyway, France itself is an amazingly beautiful country and it was a great introduction to Europe for our girls. However, I found myself constantly stressed with worry for Evan, which started on day one with our trip through the airport in Paris to catch our connecting flight, when we went through security and the guard touched Evan's headphones. Evan does NOT like people to touch his headphones; they are his prized possession and it is not unusual to hear him talk about how he's not sure how he would live without them. So, I disinfected his headphones when we got on our next flight, and talked positively about how we surely wouldn't see that security lady again when we fly home (though I had no idea if that was true, but I said it with conviction and prepared a defense in case I was wrong). He called this lady the "mean water lady" because she made us empty our water bottles (there was security between the international and domestic terminals at Charles de Galle airport coming into the country).<br />
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We finally made it to our accommodations tired, but also hungry and so we went immediately on a search for food. This was one of the first photos I took of our trip:<br />
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Despite the fact that at the end of the first day Evan was crying to go back to America because he hated France, he really did do an amazing job traveling. We were all tired and cranky after such a long travel day, so his behavior was explainable; what should be understood, however, is that the rest of us were able to understand that our discomfort was due to lack of sleep and food and we were still all looking forward to our vacation, while Evan lacked the ability to forward think his predicament and know that better times were coming. This set an unfortunate tone in his perception of France, and was one that we had to overcome for the rest of the trip.</div>
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Evan really struggled in the heat, which made sight seeing with him difficult. One day his Nana stayed with him in a village cafe while the rest of us walked up (and up, and up, and up) to a medieval village. We were incredibly grateful that he was left behind, because there is no way he would have made it. Amazingly, while we were gone, he bought some gum for Nana all by himself, which I was incredibly impressed with:</div>
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Our toughest day was the one that we chose to take a train to Monaco; Evan couldn't even tolerate the walk to the train ride (it started out well):</div>
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But, I was carrying him before we even made it to the train station (up hill, by the way, and by the way I made it to the downhill, I was breathing hard and dripping sweat). At this point, Jayme and I were brainstorming options; we hadn't even made it to our destination and things were not looking good. We ultimately stuck it out, but decided that it was our one and only train ride and that it would be travel by car from then on out in order to give us flexibility in our plans and, more importantly, air conditioning. Here is me carrying Evan in Monaco:</div>
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After our afternoon in Monaco and a train ride during rush hour, we still had a bit of hike back to our car (and food). Together, Jayme and I helped Evan up stairs and inclines:</div>
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Jayme did have to ultimately carry Evan:</div>
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And this is Evan collapsed on the floor of the Patisserie, where we were buying a quick dinner and croissants for breakfast (I already miss those darn things):</div>
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The following day, Evan did not leave the house.</div>
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Overall, my impression of disability acceptance was not good. We had two additional incidents of people (wait staff) touching Evan's headphones, and in both of these cases the waiters also put their hands on Evan. The first time, Evan had his feet up on the chair, not on the floor (the waiter pushed Evan's feet down twice), and the second time Evan's chair needed to be moved just a bit out of the isle. Perhaps if I spoke the language, the wait staff would has asked me to have Evan put his feet down, or move his chair...I don't know. What I do know is that I have never been in a similar situation in the U.S., and it was not a comfortable feeling; the family had to work extra hard to make Evan comfortable and smooth things over so that he wouldn't have a meltdown. My Mother-In-Law actually had words with the first waiter, explaining that Evan has autism, which I greatly appreciated it; by the second incident, I had remembered to have my trusty card with me:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg85yV0Gdj83Sx34z1U9gywgpf4F9V7SK9QsA7TMEVA9c69i_pRPM137N0Fm0ZmdAGK2HX8s_SrvrWrcHShjcxSa0cTZ6yWo_PFbQUSYyQMhReXB1qBDv7fj7YLPn6LZMpefyzFpvCKl3TT/s1600/IMG_6745.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg85yV0Gdj83Sx34z1U9gywgpf4F9V7SK9QsA7TMEVA9c69i_pRPM137N0Fm0ZmdAGK2HX8s_SrvrWrcHShjcxSa0cTZ6yWo_PFbQUSYyQMhReXB1qBDv7fj7YLPn6LZMpefyzFpvCKl3TT/s320/IMG_6745.jpg" width="320" /></a></div>
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It turned out that in that situation, the card was unnecessary, as another waitress had already figured out that Evan has autism because it turns out that her son is autistic too. While she didn't speak English, it was clear that she was trying to tell us that she "gets it", which was quite a welcome sentiment.</div>
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I used the card several times on our trip home in order to get us through the Priority security and boarding lines in the airport. Turns out there are perks to disability if you know how to look for them.</div>
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Some random, quirky things that came up on our travels include Evan's refusal to eat popcorn, his main staple, because apparently we instilled a great fear into him about making a mess in our rental home - he didn't poop for days - he adopted random eating rules, like some days he couldn't eat if people were near him, and on the flight home he wouldn't eat unless he was in "private" - he finally started saying "merci" near the end of the trip, which sounded like "mercy". I'm sure there were more, and I'll add them in if I remember them.</div>
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Jet lag was serious stuff for the first couple of days after we returned home, with Evan up at 2 am, then 3:30 am, 5:00 am, and finally 5:45 am. It was a tough transition, but worth it. We'll do this again, by the way...travel to Europe with the kids; we don't do much with the family because it's hard, though that is no excuse. We recognize that not only is life passing us by, but that we've created a lifestyle that, while comfortable and safe within our own home, is not doing Evan (or our girls) any service; they all need to experience the outside world. Evan, in particular, needs to be forced outside his comfort zone and taken away from his preferred activity of computer gaming, and we don't do that enough. Jayme is all ready to start planning our next adventure. Me? No, not so much. I need just a little recovery time, mentally and physically, and then, sure...anchors away.</div>
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<b><i>There is no certainty; there is only adventure.</i></b></div>
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- Roberto Assaglioli</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com5tag:blogger.com,1999:blog-7636881681067788693.post-52159000198449782862018-05-29T15:29:00.001-07:002018-05-31T03:19:26.532-07:00Please Don't Be SorryI had an experience today that didn't sit well with me. After a bit of contemplation, I think I've figured out why.<br />
<br />
Here's the set up: I had a dental cleaning today (and can I just interject that I really, really dislike dental visits on a good day); my dentist popped in to say hi and check on the family, asking specifically how Evan was doing. After she left, the hygienist asked what was wrong with him, and I told her that he has autism. Her face fell and scrunched up all at the same time, her shoulders dropped and her hand when to her heart; "I'm so sorry", she said.<br />
<br />
I immediately felt weird about her reaction. I didn't feel right. Her reaction didn't feel right.<br />
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"No, it's o.k.", I said, sitting myself taller in the chair. "He's good."<br />
<br />
The hygienist went on..."My Aunt's daughter had Ash-berger's, and she went through hell".<br />
Yes, the misspelling is intentional. You can imagine my eye strain as I withheld my eye roll, though I couldn't even vocalize a reaction because I was still taken aback by her first comment.<br />
<br />
To be fair, this woman meant no harm or disrespect with her statement; in fact, I would argue in her favor that she was doing her best to be empathetic and to connect with me. The Gretchen of 5 years ago, honestly, would have a) started crying, and b) said, "thank you", while appreciating that someone was acknowledging my struggle. The Gretchen of 1 year ago would have felt the same, but without the crying.<br />
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But, today...<br />
<br />
...today's comment felt Unwelcome. Unwanted. Uncomfortable.<br />
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So, what's changed? How did I go from <i>there </i>(yes, please feel sorry for me) to <i>here </i>(I don't like the way that comment feels)? This is what had me thinking this afternoon.<br />
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And, here is what I ended up with - somewhere along the line, within the last year, the last 6-8 months really, Evan became AWARE. He's trying to figure out this autism thing, what it means inside his body, and what it means out in the world. From Day One of his diagnosis, we said we would never, ever be embarrassed or ashamed of autism, and that is what we've taught him. Yes, there are tough days and hard work, but autism is also amazing and we are trying really, really hard for him to see that in himself.<br />
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Just a few days ago, Evan was making a comment to me that started, "some autistic people...", which really made me pause. It was the first time I've heard him talk about autism in language that is not 'People First'. Disability advocates have fought tirelessly for everyone to adopt People First Language, which places the person before the disability (i.e., the person with autism, versus the autistic person); this is somewhat controversial within the autism community because there are many people with High Functioning Autism that proudly call themselves Autistic. In general, our family practices People First Language; we rarely refer to Evan as 'autistic' but instead say 'he has autism'. However, when I heard him say, "some autistic people...", he meant <i>people like him</i> and what I felt was pride. Not shame. Not degradation. Not disadvantaged. <i><b>THIS</b>, this</i> is EXACLTY what we are trying to instill in him.<br />
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I think, then, what made me so uncomfortable earlier today was that in the look the hygienist gave me I saw pity. Pity, however, is not even in my emotion catalog and I didn't like the way it looked when she offered it up.<br />
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You can feel sorry for my stress, you can feel sorry for Evan's stress, you can feel sorry for the hardships that surround us. You should never, not ever, feel sorry for Evan. I would take away his autism for the struggles it causes, but I would never strip Evan of his being.What I learned today was how far I've come emotionally on this crazy autism ride, and, more importantly, how great Evan is doing in his personal acceptance of being an autistic person. Relentless Forward Progress.<br />
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<br />Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com1tag:blogger.com,1999:blog-7636881681067788693.post-57709977697101966202018-03-28T14:37:00.000-07:002018-03-28T14:37:10.632-07:00How Do You Measure Progress?Progress can be painfully slow, sometimes only visible after time and perspective. Other times it can be super fast, like turning on a light switch. Today, progress looked like this:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhNI-QyuZfBCoZcOGqlBO0xcOo938e4SFBz694wYJzdCcwEPErQIvASZuMPqBLU1ZkzHq5Fz1we6bXHY0FgRSzvwNOfj5X39G00e2aZeCS3-A3equMfES3ssAJyJczLSq7u98XJZB7r8lD/s1600/IMG_6071.JPG" 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/AVvXsEjhNI-QyuZfBCoZcOGqlBO0xcOo938e4SFBz694wYJzdCcwEPErQIvASZuMPqBLU1ZkzHq5Fz1we6bXHY0FgRSzvwNOfj5X39G00e2aZeCS3-A3equMfES3ssAJyJczLSq7u98XJZB7r8lD/s320/IMG_6071.JPG" width="240" /></a></div>
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It looked like a chip sandwich, to be exact.<br />
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About 2 weeks ago, Evan decided that on Wednesdays he would bring lunch to school. This announcement came as surprise to me; after all, Evan has bought lunch for approximately <b>650</b> days in a row (three years of school, K-2, plus 3/4 of this school year, minus a couple of dozen sick/vacation days). I've tried in the past to get him to pack a lunch, but to no avail. He has eaten a bagel for probably <b>645</b> of those 650 days. You can understand my shock, then, when he announced he wanted to bring lunch.<br />
<i>Great!</i>, I exclaimed (not too enthusiastically, should my response negate his desire), <i>what would you like to bring?</i><br />
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Chips, he answered.<br />
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<i>Okaaayyy....</i> (This is PROGRESS, I reminded myself), and so I packed him chips.<br />
** If you've ever wondered who 'that parent' is who allows their child to pack ridiculous lunches, that would be ME. I hope, however, that in the future you judge less 'those parents' and consider more that there could be a whole lot going on that you hadn't considered.<br />
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Imagine my surprise then, when this morning he announced that he was going to have a sandwich for lunch and that he was going to make it himself. <i>YES!, </i>I exclaimed (not too enthusiastically, should my response negate his desire - again), <i>what kind of sandwich do you want?</i><br />
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A chip sandwich, he answered.<br />
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<i>Okaaayyy.... </i>(This is PROGRESS, I reminded myself), and so I cut off the crust and he made his sandwich. He even put it in his lunchbox.<br />
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This is all that remains of that sandwich:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5yjrQjNDZZm9-5nM-Ef_JvQ71OfP_KbKB_pp_PpYzHG83uXpEeO4lmPUmQCk9vYZiv4THCRI2AKixeMF7byh1jXDKeFI2Ypnud74Zz6O2BycVsplVT-G7kBh0cse0Bx60JP7fUiMjago/s1600/IMG_6072.JPG" 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/AVvXsEjg5yjrQjNDZZm9-5nM-Ef_JvQ71OfP_KbKB_pp_PpYzHG83uXpEeO4lmPUmQCk9vYZiv4THCRI2AKixeMF7byh1jXDKeFI2Ypnud74Zz6O2BycVsplVT-G7kBh0cse0Bx60JP7fUiMjago/s320/IMG_6072.JPG" width="240" /></a></div>
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While a chip sandwich may seem so insignificant, what it means to me is that I finally have something that Evan will eat on the days that he must bring a lunch (like his upcoming field trip), because before a couple of weeks ago his choices were limited to cafeteria lunch or no lunch.<br />
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PROGRESS, one chip at a time. I'll take it.Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com5tag:blogger.com,1999:blog-7636881681067788693.post-90295925217558581282018-03-08T17:06:00.001-08:002018-03-08T17:07:21.146-08:00Do I Have a Disability?<div class="" data-block="true" data-editor="226gt" data-offset-key="5c9in-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="5c9in-0-0" style="font-family: inherit;">And, in the first aid section of Walgreen's, in the middle of the city, the question finally comes...</span></div>
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<span data-offset-key="237i1-0-0" style="font-family: inherit;">"Mom, do I have a disability?"</span></div>
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<span data-offset-key="e3ob9-0-0" style="font-family: inherit;">With years to ready an answer, I was unprepared. So, with one second to answer, I took a quick breath and said, "<i>Yes".</i></span></div>
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<span data-offset-key="e3ob9-0-0" style="font-family: inherit;">But, I couldn't stop there.</span></div>
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<span data-offset-key="e3ob9-0-0" style="font-family: inherit;">"<i>Or, you have a different ability. You are good at so many things that other people are not."</i></span></div>
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Evan didn't understand, so he said, "small words please<i>". </i></div>
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<i>"You have a disability, but that isn't a bad thing. You are so smart with things that some people are not."</i></div>
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"O.k. I'm good at finding things."</div>
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He's not, actually, but tonight I said, <i>"Yes, yes you are buddy".</i></div>
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"Ya, o.k."</div>
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There you have it.</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com2tag:blogger.com,1999:blog-7636881681067788693.post-47737385200122788372018-02-23T16:56:00.000-08:002018-02-23T16:56:42.324-08:00Is That My Autism?The most amazing thing has happened...well, maybe not the <i>most</i> amazing thing, but autism continues to fascinate me, and so I happen to think this is pretty noteworthy stuff. In the last two weeks, Evan has taken a significant interest in trying to figure out his autism; he's been verbalizing things about himself, and then he'll ask, "is that my autism?".<br />
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Here is a bit of background knowledge that is probably important to understand: after Evan was diagnosed in 2013, our very first family rule was that we will not shy away from the label. We are not ashamed of, nor embarrassed by, the word AUTISM. Autism is part of who Evan is and we love him unconditionally. We will educate those around us that do not understand (hence, part of the reason I blog), and we will model tolerance and acceptance. <b>Above all else be KIND</b>, is coming out of my mouth a lot these days as I help my older girls navigate the social complexities of middle school - we must practice what we preach.<br />
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Anyway, helping Evan understand himself has been tough. He's asked in the past what autism is, and since it's difficult for a young child with a language disorder to understand the neurological basis of his disorder, we've struggled to describe autism to him in a way in which he doesn't feel badly about himself. We highlight his amazing memory, for example. In the past he has never felt like he has had any limitations, which is great (but also hard because he doesn't understand why I keep dragging him to therapy).<br />
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Recently, however, he has begun to notice that his hearing/understanding of words may be different. He complains that his brain "slides" and it's sometimes difficult to pay attention. So, maybe because he is maturing, and definitely because we don't hide the word autism, he has started asking me lots of questions about himself as they relate to autism. Here is a sampling of his questions:<br />
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<ul>
<li>Does autism have hearing hallucinations?</li>
<li>My hearing is super sensitive, is that my autism?</li>
<li>Does everybody have trouble pooping, or is that my autism?</li>
<li>Does XXX have autism? Is it the same kind as my autism?</li>
<li>Why am I so tired, is that my autism?</li>
<li>I think I'm color blind, is because of my autism?</li>
<li>Do I have a lot of autism?</li>
</ul>
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At first, these questions took me off-guard and I stumbled to explain things to him. Now, I'm not surprised to find him trying to blame things on his autism (he is also blaming lots of things on his facial blindness, and we've had to explain that facial blindness only makes it difficult to recognize people - and, interestingly, cars...a fun fact found by our 14 year old that made it her mission to understand all things prosopagnosia). Some things are easy to explain: for example I told him that lots of people have belly problems but it's very common in people with autism because autism effects your nerves, and nerves control your belly. Other things are harder to explain; I really struggled to explain "how much" autism he has. </div>
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Some things we are discovering together. He has said to me in the past that he has color blindness but I've always explained to him that he doesn't, or told him that two similar colors are hard for lots of people to distinguish. Today when he complained about it again and asked if it was his autism, my 14 year old (who wants to study genetics, by the way) found a test on-line and don't you know, he tested positive for Tritan-type color blindness, which is a loss of color discrimination for shades of blue and yellow. Huh. No, we are not taking an internet test as the final word, but we are going to investigate it further, so stay tuned.</div>
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While I wish I could say that the progress Evan has made in understanding himself has all been positive, I have to tell you the negative. It comes in the form of a quiet thought, muttered to himself, and goes like this: <b style="font-size: small;">stupid autism</b>. We jumped right on this, Jayme and I, and told him it's normal for people to lose attention when they are playing a game, and that it will get easier; this did little to appease him. I caught him being negative again today, apologizing about his autism while recording his video game playing on his laptop (to a make believe audience because we don't share this content). The bad feelings about autism scare me, and is something that we are going to have to keep a close eye on. I wish with all my heart that he may never feel negativity about himself from another person, but I fear that it's only a matter of time. </div>
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I'll end this on a positive note...I am thrilled that Evan is trying to figure himself out. We've got a long way to go, but the more he figures out the better he can help us understand him. I think he'll go on to be the adult that offers amazing insight into the life of an autistic person; in the meantime, we'll nurture him along the way as best we can and will be ever grateful for the ride. </div>
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<img alt="Related image" src="https://pathlightgroup.org/wp-content/uploads/2016/08/autism-heart-59196.png" /></div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com14tag:blogger.com,1999:blog-7636881681067788693.post-64452475055111069822018-02-03T13:09:00.001-08:002018-02-03T13:09:19.248-08:00The Little Stuff<div style="text-align: center;">
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Evan had a great social skills group this past Thursday. It was so great that the facilitator came out to tell me that he's never seen Evan so open and engaged before; he was demonstrating appropriate social reciprocity with a peer and was even flexible enough to allow them to play music in the background. </div>
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I expressed my thankfulness for the update, and explained that for 2 days Evan had been more socially engaged with the family and that Jayme and I had specifically talked about it because it was so great to see (when I picked Evan up from school on Tuesday, I asked him how it was going. He answered, "I'm going good, thanks for asking!"). I told his therapist (S) about how I describe this phenomenon as Evan's 'window being open' (https://theasdchronicles.blogspot.com/2017/03/when-windows-open.html), and S totally understood what I was talking about...I just love it when people get it.</div>
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I was super proud of Evan, and our whole ride home I thought about how I wanted to share his progress. Then, I thought about social media and what we typically see when our friends brag about their children: sports <insert any sport here>, and academic achievements top the lists. I do it too because, you know, I'm proud.</div>
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Here's what you rarely see: potty training at 6 1/2, getting fully dressed independently at age 9 (Evan's done it once, on Christmas Eve into his new pajamas), and having a 'typical' social interaction in a facilitated group. This makes me mad, and sad, and frustrated because these kids work SO hard just to <i>be</i>, and that should be celebrated.</div>
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I've no doubt that I had I posted what I wanted to on Facebook Thursday (YEAH -Evan had a GREAT social skills group today!!), that many people would have liked it, but the significance of that achievement would have been lost on most and that is what held me back from posting. Disability is my village, but I rarely see posts of accomplishments that I know some of these super humans have worked so hard for...HOURS, hundreds of hours of practice some of the everyday skills we take for granted take to develop. Those moments should be celebrated just as often as the goals in soccer, the honor list, the lead in the play. If we could normalize these delayed milestones, maybe our attitudes about disability (or, different abilities) would change. We are not all the same. Our strengths do not always come wrapped in cute packages of leotards and dance shoes, or tough little football helmets. </div>
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This is how far Evan has come:</div>
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These cards were what we used with him in preschool when he would get mad or bang his head into me if someone talked to him. </div>
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So, here it is...</div>
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YEAH!! Evan had a really good social skills group this past week, and I am SUPER PROUD!</div>
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Next time, I'm going to post it on Facebook :)</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com16tag:blogger.com,1999:blog-7636881681067788693.post-3127594043004800222018-01-29T16:21:00.000-08:002018-01-29T16:54:20.275-08:00A Tale of ExtremesOne night, a little more than a week ago, Evan said, "MOM, the cafeteria was so loud today. Was my volume turned up to 10 or was it just chaos?".<br />
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I wasn't sure what the reason was that made the cafe so noisy that day, but I did know that he had stopped wearing his headphones in that environment, so I advised him to take them with him the next day and wear them if needed.<br />
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The next morning, while getting him dressed, I touched his feet to remove his socks (he wears socks all the time...feet shouldn't be naked, he says). Without warning, he quickly withdrew from me and yelled, "STOP TOUCHING ME! I DO NOT LIKE IT WHEN PEOPLE TOUCH ME!!".<br />
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This response was SO out of character from him; while it's no secret that he prefers not to be touched, he had never responded to me that way in any situation. And, hello...how do you not touch someone while you are getting them dressed? He refused to get himself dressed, but kept yelling at me not to touch him. A few minutes later, while still angry and on edge, he said in a loud, mad voice, " yesterday I had my fingers in my ears because it was so loud and XXX kept tickling me and YYY was touching my neck and it made me very nervous because I got that weird feeling in my throat!".<br />
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It all made sense. When I started getting Evan dressed, he began thinking about what had happened in the cafeteria the day before and he was physically reliving the feeling of that, which caused him to yell at me. Jayme and I know that when he relives memories, not all but many, it's as if he is feeling them for the first time; this is not an atypical autism manifestation, though many fail to understand the ramifications of having a memory that works that way.<br />
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Evan remained angry with me until I put him on the bus, but thankfully had moved on by the end of the day. It took a bit longer for me to move past it, however. It rattled me. It made me scared of a behavior that I had never seen and hoped wasn't something that would last. You never know, you see, what new behaviors will stick around and what won't, so I remain attentive, and cautious, and nervous, and cross my fingers that the tough behaviors leave as quickly as they come.<br />
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2 days later I laid on the couch trying to catch a quick cat nap between weekend activities. Evan came into the room and sat next to me, pulling up a blanket and covering me at the same time. In my head, I was thinking, <i>wait, did he just cover me with a blanket??</i> I stayed still, wondering what he would do next. Then, he sat back up, took some of the blanket and covered my feet (<i>YES, he definitely deliberately covered me with the blanket</i>), spooned into me and lay his head on my side. Oh, how I wished someone was there to take a picture so I could capture this moment, made so sweet after the bitterness 2 days before. I chanted in my head, <i>remember this - remember this- remember this</i>, in hopes that I could bottle up the feeling of the unconditional love I get from Evan in these stolen moments.<br />
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It is this extreme of Evan's autism that makes me so mad. The fleeting moments of love, the prolonged moments of hate. The not enough moments of the time in the middle.<br />
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-43618166706765068722017-12-06T15:11:00.003-08:002017-12-06T15:11:52.943-08:00Report Card PrioritiesIt's report card season, and here is what is on my mind: pancakes. Pancakes, and hash browns, and sausage. For the first time since spring of 2016, Evan has eaten something other than a bagel for lunch. <i>This</i> is progress.<br />
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It's not about the food choice (that I gave up caring about a long time ago), it's about the rigidity of his choice. Actually, there was no choice because there was only bagels. A bagel every. single. day.<br />
<br />
Yes, yes, I was a kid once too and ONLY ate peanut butter on white bread every. single. day.<br />
They were easy for me to make and a comfort food, and there was no way I was buying hot lunch. However, it was always a choice and it was never a rule; my drink would change, my snacks would change, and I'm willing to bet that there were days that I <i>wasn't </i>eating a peanut butter sandwich, I just don't remember.<br />
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There has been no choice for Evan; it has been his rule. There have been no negotiations. Before we moved towns, his team had been working on expanding his lunch repertoire, with some success, but when we moved that fell to the back burner and it was not a priority for me. And, so, he ate his bagel every. single. day.<br />
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What changed this week? Well, last month the school started talking about nutrition and food choices in his social skills group and in his counseling session (always in a non-pressure way, encouraging but not insisting) and clearly we are seeing the fruits of that labor; boy, doesn't that feel good. Progress where there had been none for so long.<br />
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It's been awhile since I've blogged, so you may be wondering how everything else is going? My answer is...drum roll please...well. Evan, generally, is doing very well. We've had a few hiccups here and there - some playground issues, some classroom issues - but his school team has been very responsive and open to my feedback and suggestions, and he seems to be enjoying himself.<br />
<br />
He remains behind grade level, though his report card doesn't reflect that; you must specifically ask questions like that, or you won't be told (unless you happen to know what reading level K means, and I only know his reading level because it is a benchmark on his IEP). He got a 3 (out of 4) in all of his specialist classes, even though he hasn't been to music for SIX WEEKS; apparently you don't need to be present in class to meet academic standards in music. Clearly we take his report card with a grain of salt.<br />
<br />
Evan currently attends OT once per week, swimming once per week, and new this fall is a social skills group (I pull him early from school, and this is why he misses music class; his music teacher has an accent that Evan can't understand, so no one has had a problem with this arrangement except for Evan, who enjoyed being able to completely escape into his own brain during the<br />
class :).<br />
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We've had some trouble with Evan withholding urine, a problem that we haven't seen since preschool. This started the day before Thanksgiving, after two days of him not feeling well...<br />
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* random thought: Evan made it TWO MONTHS into the school year without being sick - a huge milestone for him!<br />
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...and I wasn't sure if it was a sensory thing or not (sometimes bladder pressure can be soothing for kids with sensory disorders). On the Saturday after Thanksgiving we went out to breakfast and I asked Evan to pee before we left; he told me he didn't have to go and said he could go at the restaurant. Imagine my horror when, at <b>4:15</b> that afternoon he told me that I forgot to remind him to go pee and he was going for the FIRST time that day!! Ugh. Jayme and I have concluded that it is more a constipation issue than a sensory issue, and I am still having to remind him to pee; it's 5:40 pm as I am writing this and I just asked him if he had peed recently; he just went for the second time today right now. Sigh...work in progress...<br />
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Currently our other home priority is trying to wean Evan from his extreme TV addiction. It seems like an easy problem to have, but we are having a very hard time engaging him in other activities; this will be another work in progress, as he prefers social isolation to most anything else. Admittedly, I've gotten a bit lazy in engaging him (one can only take so much rejection), and I've got to step-up my effort.<br />
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We are feeling very blessed with where we are in life right now, since last year was such a struggle. This will pass, and we'll struggle again, but with every day that he grows and gains more skills we are one day closer to helping him realize his life dreams, which so far this school year have included being a husband, a professional soccer player, a SWAT team member, a mechanic, and a miner.<br />
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<i>Never discourage anyone</i></div>
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<i>who continues to make progress, </i></div>
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<i>no matter how slow.</i></div>
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<i>~ Plato</i></div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-77814754822624203402017-09-28T16:28:00.000-07:002017-09-29T11:14:05.598-07:00How Do You Keep Finding Me?I made an interesting discovery this morning, but before I go further with that, let me first tell you about our morning school routine:<br />
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<ul>
<li>Evan is up at the ass-crack of dawn (sorry, but it's the truth). He keeps asking to sleep in before he goes to bed, and I keep saying, "YES, please!!!".</li>
<li>He takes himself into our TV room, shuts the door, and starts to play video games. Or, if he hears someone upstairs, he may or may not walk into the kitchen to complain that he's tired and then asks, again, to sleep in.</li>
<li>At about 7, I start trying to figure out what he'll eat for breakfast. Twice this week it was a hotdog in a bun with ketchup (hey, if it's good enough for dinner, it's good enough for breakfast).</li>
<li>At 7:20ish, he's yelling at me that he's thirsty and commands a drink. Sometimes he says, "chop, chop!"</li>
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*No, I am not making any of this up.</div>
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<li>At 7:50, I say to him, "Buddy, it's time to get dressed", to which he replies, "can I have more time?". 99.9% of the time, on a school day, I say yes.</li>
<li>At 8:00, we dress him, push, carry, or pull him into the bathroom so he can pee, then catch him as he tries to escape having his teeth brushed (by me).</li>
<li>He heads upstairs (his room is on the lower level of our house), and I brush his hair, put on his shoes, and head out the door.</li>
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This process is irritatingly inflexible. Sometimes, Jayme will try to help me out and go out of order, which stresses me out because if we miss a step we may not be able to add it back in. We also cannot rush him, as that totally stresses him out. Because I have to be prepared for something to go wrong, I am rigid with the timetable in order to give us a few extra minutes so we won't miss the bus.</div>
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For the past week or so, when I head into the TV room to get Evan dressed, I have found him in the same spot on the floor, which is out of sight of the door. Every time he says, "oh, you found me", and I say (with a chuckle), "you are in the same spot as always, silly". </div>
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This morning he said, "Agh! <i>How</i> do you keep finding me?" I started to laugh, but then stopped...</div>
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"Evan", I said, "do you think I don't know where you are because you can't see me?".</div>
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"Ya", he said, "that's how it works!!".</div>
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Huh.</div>
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(Seems this is a common sentiment of mine lately)</div>
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So, there's this thing called Theory of Mind; I've mentioned it before in blogs, and essentially it's the ability to understand that people have their own thoughts, beliefs, and actions which can be different from your own. Theory of mind is often impaired or delayed in kids with autism for a number of reasons, including delayed speech acquisition and gaps in cognitive function. To teach theory of mind to kids who don't develop it autonomously, you literally have to model thought process (i.e. by talking out loud the thinking we usually do in our heads when we make observations and decisions in different situations). We worked a lot on this with an excellent therapist when Evan was in preschool. </div>
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I though Evan had a lot of it figured out. Sure, I know he has gaps in his theory of mind, which typically develops between the ages of 2-7, but I thought for sure he had figured out that just because he doesn't see someone doesn't mean that they don't know where he is. This particular skill should have definitely imprinted itself by now (it' hard to pin down the exact age when this should happen, but I saw some references to the 4-5 year age range in some literature). </div>
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I'm curious...if you think about this with your own children...do you any of you have 8-9 year olds that haven't figure this out yet?</div>
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Clearly, this gap will cause a disadvantage at hide and seek, but at what else, I wonder?</div>
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Hmmm....food for thought...</div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-22039514937299268202017-09-22T16:59:00.002-07:002017-09-23T05:52:18.309-07:00Prosopagnosia - Ever Heard of It?Prosopagnosia...I have a hard time even typing the word...is commonly called facial blindness, and I think Evan has it. It's actually not common at all, affecting only a small percentage of the population. I'm not sure how I even first heard of it, but something happened at school pick-up this spring that caused me pause and put prosopagnosia officially on my radar.<br />
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Here was the scenario: Evan and I saw one of his old behavior therapists at school pick up last June. This was someone who was in our house probably 6 hours a week for over a year, or, in other words, someone who was very familiar to us. I said hello to her, but Evan didn't say much (which is not unusual). When we got in the car, we had the following conversation:<br />
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Me: Wow, that was neat that we got to see A.<br />
Evan: She must have changed her style.<br />
Me: Oh, I didn't notice that; I recognized her by her face.<br />
Evan: I don't recognize people by their faces.<br />
Me: How do you recognize people? (I was thinking that he was going to tell me it was by their clothes, based on his comment about her fashion)<br />
Evan: I recognize people by their voices.<br />
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This comment completely stunned and fascinated me, but it was the first I ever heard him say something like that, so I just filed that away in my brain as one of the many strange things that pop up that I can't explain (like the time when he was a pre-schooler and he was crying that his eyes hurt, but it was so random and strange; I could never figure out what was happening to him that day).<br />
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Maybe a week goes by, two at the most, and I was sitting at my desk (which is really a card table in the kitchen because we are short on office space) and Evan walks by and looks at a graduation card with a picture of his cousin - a cousin that he has seen thousands of times in his life, and who we had seen just three days before this event. This was what was said:<br />
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Evan: Is that your dead friend?<br />
Me: (thinking, what the hell?) No, that is AF.<br />
Evan: Oh, I couldn't recognize her! (as he is laughing at himself)<br />
Me: How do you recognize people?<br />
Evan: By their voices.<br />
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At this point, I shared my suspicions with Jayme and started doing some research. There is, in fact, a developmental prosopagnosia (versus developing it after a brain trauma), and at least one study has found it to be highly heritable and theorized it to be caused by a defect in a single dominant gene. Interestingly, you can read about anecdotal findings in some autism literature and social media sites, but that was something I was never dialed into until I looked. Because there is not much I can do with this information, I internally flagged this to be brought up at Evan's next neurology appointment.<br />
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Mid-summer, though, we ran into his 2nd grade teacher at Target, and I could tell he didn't recognize her. Frankly, the fact that he wouldn't recognize her didn't even cross my mind, despite the two incidents that I wrote about previously, until we were in the moment and he became his very withdrawn self. Later, I asked him if he recognized her and he said, "not at first because she had a cap on".<br />
<br />
So, now I started thinking about the social impacts that facial blindness could cause, and was wondering if this could explain some of his weird quirks, like how he doesn't like to see Jayme without his glasses on, or doesn't like it when I wear a hat. Imagine all the people you see in a day and how stressful that would be if you couldn't tell who they were until they talked to you, including your own family?<br />
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Last week I went to pick Evan up at school before his weekly OT appointment. The pick up procedure is standard and he's done it a few times already; it's a drive-by situation, so the child watches for your car and then gets in when you pull up in front of the line. I hadn't showered that day (real life problems) and it was sunny, so I had on a hat and sunglasses. I could see that he recognized my car, but even after I waived at him he wouldn't come to it; I rolled down the window and waived, but he still hesitated. Finally, I took off my sunglasses and yelled, "HEY, Buddy!", and then you could see it clicked for him - <i>THAT'S my mom.</i> On the way home I asked him if he had a hard time recognizing me with a hat on, and he said, "HECK, YA!!".<br />
<br />
Huh. Fascinating, isn't it?<br />
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What now? Well, I can try to get him formally diagnosed, though it seems that there is some unreliability with the testing; I still need to talk to his neurologist and get her take on it too. For now, the "treatment" is all social modification, or, in other words, if someone is coming up to him I should say things like, "hey, Evan, looks it's XXX". I need to discuss this with the school personnel so they can do the same, and I'll do just that in our first meeting next week. There are several strategies people with this disorder use, with the most popular (anecdotally) being voice recognition (use of clothing and shoes as indicators of who is in front of you can be unreliable for obvious reasons). It seems that Evan is doing a fine job of overcoming this obstacle on his own, but I think it plays significantly into his social comfort level; in fact, as I'm writing this, I always wondered why he would be so taken aback if we met a peer outside of school unexpectedly, like in the grocery store (now, he rarely goes out with me, so we run into this problem less often) and facial blindness could explain it.<br />
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I just love trying to figure out his brain, truly. It's so amazing to me. I only figured this facial blindness out because he could verbalize it for me, but what about all those people who can't verbalize it? Could this be more common than we think? Could we significantly alleviate social anxiety in a slew of people by just using some verbal prompting? I live for this stuff...for the little clues that help me understand why Evan is the way he is, and what his perceptions are. Why aren't more people curious about this? Why aren't we working harder as a society and within our educational system to learn about things like this and how they impact learning, and relationships, and <i>living.</i><br />
<i><br /></i>
<br />
<div style="text-align: center;">
<span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px; text-align: left;">“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” </span><br />
<span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px; text-align: left;">― </span><a class="authorOrTitle" href="https://www.goodreads.com/author/show/18486.Audre_Lorde" style="background-color: white; color: #333333; font-family: Lato, "Helvetica Neue", Helvetica, sans-serif; font-size: 14px; font-weight: bold; text-align: left; text-decoration-line: none;">Audre Lorde</a><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px; text-align: left;">, </span><span id="quote_book_link_387228" style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px; text-align: left;"><a class="authorOrTitle" href="https://www.goodreads.com/work/quotes/376865" style="color: #333333; font-family: Lato, "Helvetica Neue", Helvetica, sans-serif; font-weight: bold; text-decoration-line: none;">Our Dead Behind Us: Poems</a></span></div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-53570934359671537602017-08-29T16:58:00.000-07:002017-08-29T16:58:21.864-07:00Ramblings on a First Day of School EveI'm sad. I can't believe the summer went so fast, and, for the first time in a very long time, I'm sorry to send 2 of my 3 off to school tomorrow. This summer was, you see, the best one I've had since Evan was 1 1/2 years old, and it wasn't long enough. We had some trouble, but overall the theme of the summer was the same as my last blog: the Best. Summer. Ever.<br />
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We saw such milestones this summer. Not in speech, or coordination, or strength, but in happiness, in risk-taking, in socialization. The summer <i>DID </i>go horribly right, and now my stomach hurts and I'm not sleeping because I'm worried about what comes next.<br />
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Some of the best news of the summer was that Evan learned to swim underwater and to jump in the deep end (this skill is less than a week old). These were HUGE accomplishments, because his fear of the water would literally paralyze him. From a safety perspective, we had to push him continually through his discomfort, and we couldn't have done this without his swim instructor from Swim Angelfish; if you aren't familiar with this organization and are a parent of a child with special needs, look them up - you won't be sorry. Now that he can jump in over his head and successfully swim, we will put him in regular clothes and shoes to be sure he can still do it; this is an incredibly important skill, which may seem silly to some, but the change in sensory input and extra weight of the clothing could negate Evan's ability to safely get himself out of a dangerous situation. Anyway, here is a picture of him swimming underwater:<br />
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We didn't do as many things as I would have liked this summer (my reference is the days when he was little, and I could drag him anywhere with the girls without complaint...it wasn't easy, but he was little and so it was doable), but we did what he could handle; unfortunately, that meant skipping some of the things on my girls' summer bucket list, like the beach (which he can't tolerate because of the sand). He did tolerate a trip yesterday to the zoo, an item on his older sister's bucket list and he did very well. He does continue to fatigue quite easily, and I do have to carry him on occasion; he is getting so tall that I'm not sure how long I can continue to do this, but on the bright side I find that if he is wearing his headphones, I don't get any disapproving stares from passerby's, which I appreciate.<br />
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A few more random pics from our summer:<br />
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Evan not mini-golfing.</div>
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Evan not eating ice cream with everyone else.</div>
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Evan kayaking!!!</div>
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So, with such a big summer, am I premature in my worry for the school year? Maybe. However, Evan has mentioned some things that have raised my haunches, including the fact that his stomach hurt on his recent tour of the school (and his only question was where the nurses office was located), that he only trusts his school "2%", and that he's not sure he's going to eat because "I only trust the school 2%". Here's to hoping that I'm pleasantly surprised, again.</div>
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Farewell, summer of 2017 - it's been a good one.</div>
Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0tag:blogger.com,1999:blog-7636881681067788693.post-68754329033234715312017-08-08T13:27:00.000-07:002017-08-08T13:27:59.182-07:00Skateboard Obsession, Day 1<div class="separator" style="clear: both; text-align: center;">
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Real kid practice needed a little intervention today in the form of bribery. After returning to our house from a trip out of state, Evan retreated to our TV room from which he has barely reemerged. By 8 this morning, he had logged over two hours of video gaming and TV watching (he watches others play video games, so I'm not even sure how to categorize that), and had said no to every alternative activity I offered. No to anything inside our house (playing, coloring, cooking, swimming), no to anything outside our house (movies, indoor play place, stores). Yesterday I had to resort to the "you're going to summer school if you don't leave the house" line, which worked like a charm, but today I was trying to make the point that he can't spend his whole day in front of the TV or computer even if we stay home. The idea of limited screen time grew more and more caustic to him, but LUCKY ME - I was out running when he really broke down, so Dad had to work through the roughest part of his tantrum; during this time, Evan told Jayme that he's always wanted to learn to skateboard and so Jayme suggested that finding a skateboard could be something we do today.</div>
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I'm not sure how Evan settled on skateboarding, but I think it was from a video game because he was using terms like "pop a wheelie", which is something we don't say in normal conversation here. Skateboarding did the trick, though, and he happily left the house. Several stores later, and VOILA ~ our skater dude was born.</div>
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Evan practiced for a long time in our driveway. A really long time...over an hour, which by Evan's standards, for physical activity at one task, is huge and by the time he was done he was like a limp noodle when I was taking his pads off. He talked about practicing tomorrow morning (so he could play video games after), and that his goal is to do turns and ramps. I'm not sure he'll actually stick with it, but the $20 skateboard and $25 pads were definitely worth the conversation and activity that I got this afternoon. </div>
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I'll admit that one of my limitations as an autism parent is my ability to stay motivated in the face of Evan's restricted interests. With my girls, there was always something we could do together (baking, coloring, scrapbooking, trips to the zoo, etc.), the biggest hurdle being my constant exhaustion and lack of creativity. With Evan, however, there is little that I can engage him in; Jayme has a much better chance of getting his interest due to their shared love of roughhousing, video games, Star Wars, and superheros. On the rare occasion that I can get him interested in something, like Legos, it's very short lived (he'll build the Lego guys, then I spend hours, alone, building the rest). I tend to really feed into Evan's lack of motivation with social activities, even within our own home, and do less with him, and less with the girls, which makes me feel guilty; it's a cycle that is quite hard for me to break. In fact, I feel like there are some days where I've spent less than 30 minutes with Evan in the same space as me for the <i>entire day</i>!! That isn't his fault, it's mine. It's an easy trap to fall into...he's got an electronic babysitter and that frees me up to do something else, or nothing at all. </div>
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Anyway, I'm hoping that Evan's skateboarding interest will last for at least a few days. I dream of being that parent with boarding ramps in my driveway. Drumming is the other thing he's interested in right now, so if I can just push that one off for a little bit, my waning hearing will be thankful.</div>
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Running for Autismhttp://www.blogger.com/profile/16693730215240585153noreply@blogger.com0