tag:blogger.com,1999:blog-91926947546140571882024-03-13T01:03:41.591-07:00Spaceship MaxStrong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-9192694754614057188.post-12915646702908704592017-04-19T18:47:00.000-07:002017-04-19T19:59:27.034-07:00Practice what you preach <div dir="ltr" style="text-align: left;" trbidi="on">
I have been a huge advocate for <a href="http://spaceshipmax.blogspot.com/2015/04/life-isnt-typical-for-our-family-dexter.html">early intervention</a> since Max's autism diagnosis. Early intervention helps not only the child but gives parents resources, a community, and also a place to learn how to better help their child. Both Max and Dexter have benefited from early intervention through <a href="http://friendsofgiantsteps.org/">Giant Steps Autism Pre-School</a>. <br />
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"If you have met one child with autism, you have met ONE child with autism."<br />
Each child on the spectrum is different. What works for one child might not work for the other. Something that might be really hard for one child might not be a challenge for another. I believe this to be true with all children not just those on the spectrum. But when you say "my child is autistic" there seems to be a in the box definition. Believe me when I say, autism is never inside a box.<br />
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Dexter is going to be four this July. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidoOYttMAnNW-speznUWIIgZWOAq4AQKmWPk4SgeLghl_96JHa5Sw3LQ8wqjj7gZNq8RWgxQCnnAdmudYdwaLu-apBrV9IeOGndhntEI-LhPGZBlIRvErl83RPTX8PC-tadqCZn_OqStpw/s1600/IMG_1788.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidoOYttMAnNW-speznUWIIgZWOAq4AQKmWPk4SgeLghl_96JHa5Sw3LQ8wqjj7gZNq8RWgxQCnnAdmudYdwaLu-apBrV9IeOGndhntEI-LhPGZBlIRvErl83RPTX8PC-tadqCZn_OqStpw/s320/IMG_1788.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dexter, 15 months.</td></tr>
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Dexter has been attending Giant Steps since September 2016. We are eight months into the program and we have seen amazing strides in his development. Dexter is really smart, he is cognitively on track with his typically developing peers. Sometimes I put the other challenges he has aside because he is so smart and so clever. This week I had a huge wake up call and Will and I had to make some big decisions about Dexter, something that I was not expecting.<br />
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The plan for next school year was to have Dexter at <a href="http://www.waldenschool.us/">Walden</a>. Walden is where both Will and I teach. Walden has a preschool and he would thrive academically but there was this nagging feeling that other aspects of his development would regress. <i>I wanted so bad for him to be at a typical school, and selfishly I wanted him to just "be normal." </i>Having Dexter at Walden would help our family schedule, our family finances, and would just be easier (day-to-day).<br />
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Yesterday I met with Dexter's teacher, his speech therapist, and his OT/PT specialist to go over his progress and some testing results. And while his cognitive development is great, he struggles in other areas (you know the areas I was ignoring). I realized that Dexter needs Giant Steps. He needs the physical therapy, the behavioral therapy, and the occupational therapy that he wouldn't get at Walden. He needs an autism specialist, and frankly so do I. Dexter is so different than Max and I need to be educated on how to best help Dexter on his <i>own</i> journey. The strides he has made this year are astounding, why wouldn't I want him to have another year of early intervention to keep the momentum going? I was being selfish. Dexter deserves the same support Max had for two years at Giant Steps.<br />
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The future is unknown. Will Dexter go to Walden, who knows? Will Dexter go to Spectrum with Max, who knows? What do I know about his future? Not much, except that his mom promises to do a better job looking at his whole person.<br />
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*A huge thank you to Tiffany (Dexter's teacher) who has been so supportive and loving to Dexter this whole year. She has been the perfect person for Dexter to learn and grow from. We love you Tiff.<br />
<br />
----------And for the record----------<br />
"My colleague, who is not a parent, and lately has no filter, reminded me that the needs of my children are more of a priority than my convenience. For four hours a day, it is not worth the progress he could be making,' she said in a matter of seven seconds after being questioned. 'Our school isn't equipped to handle autistic children in a way that Giant Steps can. Besides you waited forever to get into that school. It's a no-brainer."'<br />
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Thank you Jamie for talking to me and also for being an upfront good human. <br />
I needed to hear this.<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-29982695669708866492017-03-27T20:39:00.001-07:002017-03-28T07:29:46.423-07:00Dinosaur Karen<div dir="ltr" style="text-align: left;" trbidi="on">
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My Mom passed away from melanoma cancer in 2009. My mom, Karen Rust, would have been a fantastic grandma. She would have been Max and Dexter's biggest fan. I can picture her running in all of the Autism Speaks Races, and wearing blue the whole month of April. She might not be here on earth, but I know she is watching out for our family. <br />
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The one thing that has always been hard for me was not having my mom physically around for the birth of Max and Dexter. Max was born two years after my mom passed away. There are things I wish I could have asked her about being pregnant, about caring for my body after birth, about caring for newborns, and just having the time with my mom surrounding the birth of my boys. I know she was there in spirit, and I know she gave me a lot of strength, but there is something about being physically there. <br />
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Max lives in a world of dinosaurs. He believes dinosaurs are alive. Max is a dinosaur and wants to protect and love all the dinosaurs. Dinosaur world is where he goes when he is overwhelmed with the real world, it is his safe place. It is hard to get him to leave dinosaur world. A few months ago he started talking about a dinosaur named <i>Chomp</i>. Chomp the dinosaur would come back daily and Max would incorporate him into his dinosaur world. Soon after Chomp another dinosaur came along and this dinosaur had the name <i>Karen</i>. At first I thought it was a funny coincidence. But honestly we have never said "Grandma Karen" to Max. When talking about my mom we either say "Grandma" (which if you knew my mom you know she would have hated being known as a grandma) or "Mommy's Mom". <br />
Karen soon became a regular in Max's dinosaur world. He would talk to Karen, tell us about Karen, and remind us that Karen was in the room. Karen would come up more and more especially when Max was upset, he would call for Karen and tell Karen what was making him scared.<br />
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I picture my Mom in heaven with her big smile (also laughing) because her grandson had turned her into a dinosaur. A large, dirty, loud dinosaur. She is loving it! And Karen is here to stay. Max talks about her daily. We have asked Max where Karen came from, and he just says "It Karen!"<br />
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Just now I asked Max the following:</div>
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Me: Tell me about Karen.</div>
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Max: I love Karen.</div>
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I do too Max. I do too. <br />
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So as cheesy as this sounds, my mom is here, she is a dinosaur. She is protecting Max from the scary real world. She protects him from the loud sounds, the bright colors, and the confusion of daily life. Karen the dinosaur is pretty amazing. And I love her.<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-139923249656160742017-03-02T13:54:00.001-08:002017-03-02T18:19:15.050-08:00Honesty<div dir="ltr" style="text-align: left;" trbidi="on">
Writing a blog about our autism journey has been so therapeutic. Will and I are able to look back and see the progress that Max and Dexter have made in the last 2 years.<br />
This week I have been looking back a lot.<br />
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Max and Dexter have made progress but some days, weeks, even months feel like we are drowning and can't catch a breath. That has been the last two weeks. Max is regressing in school and at home. He isn't sleeping, and it is taking a toll on our family. He tantrums most of the night. From about 5pm until he falls asleep. And his tantrums are becoming more violent and extreme. He is also a big 5.5 year old, weighing 53 pounds and 48 inches tall, who can physically hurt you if he is in a rage/<a href="https://en.wikipedia.org/wiki/Mania">manic</a> stage. We do a lot of therapy methods at home, and try to stay as calm as possible, but some nights I loose my cool. I yell and cry and get upset with Max. I then have a pity party and Will tries his hardest to tell me what a great Mom I am. These nights are hard, and I know it is just a part of our life, but some days I just want some normality.<br />
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Why the <a href="http://www.myaspergerschild.com/2009/07/temper-tantrums-and-meltdowns-in.html">tantrums</a>?<br />
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Will and I have been asked "Are you sure they are autistic? They seem so calm when you are out. And your pictures show how happy they are." <br />
Another common statement we often hear about Max and Dexter is "They are just acting like children, they are growing up, you must be <a href="http://www.scarymommy.com/viral-tantrum-video-autism-special-needs/">too soft</a> on them, and you are worrying to much." <br />
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I often don't know how to respond to these statements or questions. Two years ago I would have been on the defense, but now I am confident with both boys diagnosis. If you spend time with them at different parts of the day, and for more than a few minutes at a time, you will begin to understand what Will and I experience daily. Max often holds emotions in all day at school, but then at night his brain is overworked and overwhelmed. This is when he becomes aggressive, angry, and what other people would describe as depressed. His emotions change minute to minute some nights. He is being taught at school and at home (through therapy) how to show emotions in a positive and constructive way. His processing speed is slower than a typical child so progress is slow.<br />
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Real life vs. social media life can be deceiving. I try to share our real life. But if I only showed the hard times I would get depressed. I find comfort in looking back at the happy and positive moments, it also shows the progress we have made as an Autism Proud family.<br />
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Both Max and Dexter have such amazing attributes. <br />
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Max is so sensitive and has been since he was born. He studies the world. He loves his family, and even takes a picture of us to school with him each day. He loves Dinosaurs more than anything, to the point where he believes he lives in a dinosaur world.<br />
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Dexter is a ball full of energy. He gives the best hugs and can smile his way out of anything. He loves letters and has been able to identify the letters of the alphabet since 14 months old. He is really into video games, and can make his own Mario Maker levels. He also is a great brother to Max and has helped Max find his physical voice.<br />
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Will and I have days filled with fear and doubt, but they are often forgotten when we see the boys accomplish something new, or put a shirt on by themselves for the first time. Those moments make us feel like we are doing something right as their parents.<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-79885541615382541452016-12-04T17:33:00.000-08:002016-12-04T17:56:44.309-08:00What is it like to live in the dark?<div dir="ltr" style="text-align: left;" trbidi="on">
It is 5:30 on a Sunday night.<br />
We are currently sitting in the dark. Not because we are watching a movie, or going to bed, but because Max hates lights.<br />
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<tr><td class="tr-caption" style="text-align: center;">This is Max running to turn off the lights I just turned on. (My bad.)</td></tr>
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Max's OCD and anxiety have been getting worse. He follows us around the house closing all of the doors. The doors and lights have to be closed and off for him to be able to relax and calm down. He has to have the lights off (or what he calls "the moon") from sunrise to sundown. It is becoming a hard way to live.<br />
If we put the lights on he goes from calm Max to over-the-top, out-of-control Max. He cries, tantrums, throws, bites, kicks, and argues - which can last for up to 2 hours. Yes, we have tried a lot of coping mechanisms, we have tried tents, sunglasses, and other ways to make it dark for him beyond just turning off the lights. (Because that just leads to a meltdown.) Will and I have talked to his teachers, other autism families, consulted Dr. Google and alas they have no ideas other than what we have been trying.<br />
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We are hoping this is a phase. One that will go away quickly. But for now we are trying our best to stay calm. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKONACV-uXFzq5RckL_9YBkadsC4bWL99alnd7si2xt2HmBRQK9ejCum1cdJN9wvqRJfPdXxAU2D_rBCwaasn7X-s0AgPTbTyZIjEG4Px1K2BqTjQkQU5BcHU91a4u28IvqAcycE82eO7h/s1600/IMG_6318.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKONACV-uXFzq5RckL_9YBkadsC4bWL99alnd7si2xt2HmBRQK9ejCum1cdJN9wvqRJfPdXxAU2D_rBCwaasn7X-s0AgPTbTyZIjEG4Px1K2BqTjQkQU5BcHU91a4u28IvqAcycE82eO7h/s320/IMG_6318.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That is Max. In the dark. Under a tent. With the lights off. </td></tr>
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Autism just doesn't go away, there is always something new and unpredictable. So when people ask "He seems to be doing better?" or "Is the Autism going away?" Or they comment to us how "lucky we are to have an easy autistic child!" Yes, we are very blessed to have a sweet boy. Max struggles daily, and sometimes his struggles come out in unforeseeable ways. Autism is magical, but is also frustrating and hard and something our family lives with. There are silver linings and amazing moments, but there are also moments where I want to run and hide. (And cry and wonder what the hell I am doing?) <br />
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So currently if you come to our house, bring a flashlight, and some patience. You will be in the dark. And Max still doesn't wear clothes in the house, so expect him to be in his cute boxer briefs.<br />
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*And for me writing down my frustrations is the best way to deal with stress. Hence this blog post.*</div>
Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-53083996115983866472016-10-18T13:47:00.001-07:002016-10-18T13:54:50.560-07:00Max's Kindergarten IEP <div dir="ltr" style="text-align: left;" trbidi="on">
I have taught now for 13 years. I have been to tons of IEP meetings and have met with hundreds of parents for Parent Teacher Conferences. But <b>nothing</b> can really prepare you for your own child's first parent teacher conference. It is so weird to sit on the other side of the table. As I drove to Max's school I was nervous and had a pit in my stomach. What were they going to say? What are they thinking our home life is like? Am I am bad parent? Did we make the wrong decision to send him to Spectrum? Do they love Max? So many unanswered questions were racing through my head.<br />
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First, what is an Individual Education Plan or IEP?<br />
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<span class="_Tgc _y9e">Each <b>IEP</b> must be designed for one student and must be a truly individualized document. The <b>IEP</b>
creates an opportunity for teachers, parents, school administrators,
related services personnel, and students (when appropriate) to work
together to improve <b>educational</b> results for children with disabilities. </span></div>
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<span class="_Tgc _y9e">Both Max and Dexter qualify for an IEP because of their autism diagnosis and their inability to reach the state core curriculum without assistance. Having an IEP can really help a child be successful. I have seen it first hand in my own classroom, and with the proper accommodations and goals children really can be successful. </span></div>
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<span class="_Tgc _y9e">One of Max's IEP goals is to be able to use scissors properly to cut out a circle. They will practice first cutting straight lines and then slowly move toward the goal. He has a year to complete the goal, but if the goal is met before the year mark then we can meet with the IEP team again and establish a new goal. If the goal doesn't look like it will be met, we can either keep the goal or make a new one. </span></div>
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<span class="_Tgc _y9e">Max has 2-3 IEP goals for math, speech, occupational therapy, physical therapy, and also social/emotional skills. </span></div>
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<span class="_Tgc _y9e">Something that was very interesting at Max's IEP was learning that Max hasn't picked a dominant hand. We thought for a while he was a lefty, but when you observe Max for long periods of time you notice he doesn't have a dominance. This is typically established between ages 3-4. His brain hasn't established dominance yet and will actually need OT/PT to help his brain. It is really interesting how Max's brain works. </span></div>
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<span class="_Tgc _y9e">If you want to read more about hand dominance and the brain here is a great blog post: <a href="http://www.ot-mom-learning-activities.com/handedness.html">http://www.ot-mom-learning-activities.com/handedness.html</a></span></div>
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<span class="_Tgc _y9e">And a second article: <a href="http://www.ot-mom-learning-activities.com/hand-dominance.html">http://www.ot-mom-learning-activities.com/hand-dominance.html</a></span><br />
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<span class="_Tgc _y9e">As Max continues to learn and develop his IEP will also change. Currently Max is in an adaptive skills Kindergarten class. He is lower on the Spectrum and has challenges that need more 1-on-1 care than other children his age, even at Spectrum. </span></div>
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<span class="_Tgc _y9e">I am glad to know he is loved at Spectrum. I have never felt more confident in the decision we made as a fmaily to send him to school there.</span><br />
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<span class="_Tgc _y9e">I am also glad that my first parent IEP is over. I really had nothing to worry about. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">This is Max on his first day of school at Spectrum Academy. Spectrum Academy is a k-12 charter school for students on the autism spectrum. </td></tr>
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-90051047395335387342016-08-21T12:45:00.000-07:002016-08-21T12:45:48.156-07:00Autism Goes to Church - #1<div>
From the dad:</div>
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Today at church, during Sacrament Meeting (main congregational sermon meeting) Max was having a rough time. The lights and organ and singing and loud microphone voice all combine into one big overstimulation party. Then we ask him to sit still and stay quiet. Ha.</div>
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To distract Max and Dexter today I started drawing pictures. First trucks and airplanes.</div>
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Then sharks, whales, Mario, and Pikachu.</div>
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Then Max started talking about eating vegetables and how they go into your tummy, so I drew a diagram.</div>
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Well, Max also knows where food goes after it leaves the tummy and he started talking about it. Then without warning, Max said "I love the POOPIES!" Said it loud and proud. </div>
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I was rolling, trying to keep all the giggles inside. I was partially successful.</div>
Will Stronghttp://www.blogger.com/profile/13253387218024392823noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-30624117940853938872016-07-19T19:47:00.001-07:002016-07-19T19:47:51.867-07:00Uncle Brandon's Unconditional Love<div dir="ltr" style="text-align: left;" trbidi="on">
I am the proud sister to Brandon Thomas Rust. Not a day passes by that I am not reminded how lucky I am to have a brother like Brandon. <br />
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Brandon is 3 years 9 months younger than me. When he was born I immediately loved him. I still remember vividly going to the hospital to meet B for the first time. <br />
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Growing up Brandon excelled in athletics and academics and I was so proud. I loved being Brandon's sister. Brandon had a special relationship with my Mom, and growing up I would dream of the day I would have a son that looked at me the way my Brother looked at her. <br />
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My brother would come to all of my cross country and track races in high school. I loved knowing that he was there cheering me on. And I know he was my secret weapon to having a fast kick at the end of many important races. <br />
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When Max was diagnosed with Autism at age 2.5 nothing changed, Brandon was supportive. Anytime I call with new information about Max he always asks "what can I do, and are you okay?"<br />
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Then 2 years later when I made the call to Brandon to tell him that Dexter was also Autistic, he again wasn't phased, but was supportive and concerned with how he could help. My Brother is a lot like my mom, he loves deeply, and cares about his friends and family with all his soul. And his special needs nephews are no different he just loves them. <br />
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I have never been able to run a marathon. It was always a dream of mine, but in 2003 I had major reconstructive foot surgery. I now have only 75% mobility in my left foot, and have to be very cautious not to hurt it again. Running was such a huge part of my life, and to have it end so abruptly hurt my soul. When my Mom passed away running really felt so distant. Running bonded my mother and I. It was where we had our deepest conversations and most memorable experiences. The loss of running and my mom left me feeling very empty. <br />
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Then my brother started running, and in November 2009 he ran his first Marathon in memory of my Mom. Running came back into my life with a new light. Brandon might be running for my Mom every November, but he is also running for me. <br />
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The Angels Run is in memory of my Mom, Karen Rust, but also helps my Brother raise money for the NYC Marathon in November. And this year <a href="http://spaceshipmax.blogspot.com/2016/07/my-mom-and-max-run-together.html">Brandon is running for Autism</a>. <br />
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To support Brandon's marathon efforts please click the link below:<br />
<a href="http://lightuptheroomfoundation.org/angels-sponsor-here/">http://lightuptheroomfoundation.org/angels-sponsor-here/</a><br />
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To be a part of the Angels Run please click the link below:<br />
<a href="http://lightuptheroomfoundation.org/angels-run/">http://lightuptheroomfoundation.org/angels-run/</a><br />
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**And please feel free to share this blog post with friends and family. <br />
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So much love to you and yours. <br />
Tiffany Strong<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-16577894727876561382016-07-11T21:24:00.000-07:002016-07-12T16:25:19.914-07:00My Mom and Max Run Together <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Just the other day my dad commented, "The perfect Rust family day is a run in the morning and the rest of the day spent relaxing at the beach." Running literally (okay, metaphorically) runs in my veins. It is a part of my genetic make-up. It is my constant, my first love. My mother taught me this at an early age. I remember going to the 4th of July 10K Race at Washington Crossing State Park with my family. It was a yearly tradition that my dad would run the mile fun run with Brandon and I, and then my parents would run the 10k together. Running is something that defines us as a family. The shores of New Jersey are one of our most favorite places on planet Earth. My very first race that I ever ran in High School was along the boardwalk at the Jersey Shore. It was symbolic of the many years of running I had ahead. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">My mom passed away August 3rd, 2009 from Melanoma cancer. Soon after, my family created</span><a href="http://lightuptheroomfoundation.org/" style="text-decoration: none;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">The Light Up the Room Foundation</span></a><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">. Using</span><a href="http://lightuptheroomfoundation.org/karen-s-story/" style="text-decoration: none;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">Karen's story</span></a><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> as a guide, the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Light Up the Room Foundation </span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">provides support for abused children, victims of cancer, and cancer research. Each year my family holds the Angels Run to raise money for the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Light Up the Room Foundation. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">This year, in addition to raising money for this foundation my brother, Brandon will be raising money for his participation in the New York City Marathon. He will be running on the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Run for Autism Marathon Team</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> as part of the </span><a href="http://www.researchautism.org/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">Organization for Autism Research (OAR)</span></a><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> in November. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span>"This is a cause that is dear to my heart as both of my nephews, Dexter
and Max, are on the autism spectrum. I have witnessed first-hand the
transformation that both of my nephews have gone through when given the
right type of support, and it truly is life changing." -Brandon Rust.</span></span><br />
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">OAR provides research and support for individuals and families with Autism, catering their care to match the needs of the individual--a must for any child along the spectrum. To help support OAR and Brandon's marathon cause, please visit:</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><a href="http://angelsshoptoo.org/epages/96e61832-98d2-478e-aeec-7036fe6333c4.sf/en_US/?ObjectPath=/Shops/96e61832-98d2-478e-aeec-7036fe6333c4/Categories/2" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">http://angelsshoptoo.org/epages/96e61832-98d2-478e-aeec-7036fe6333c4.sf/en_US/?ObjectPath=/Shops/96e61832-98d2-478e-aeec-7036fe6333c4/Categories/2</span></a></span></span></div>
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<div dir="ltr" id="docs-internal-guid-a4585b1d-dd4a-c08f-edab-d1915cab5217" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Additionally, the Angels Run 5k at Hopewell Vineyards is taking place on September 24th in Pennington, NJ. A portion of the proceeds from that day will go towards supporting Brandon’s marathon effort. To register for the race, please visit:</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><a href="https://www.raceit.com/Register/?event=37763" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">https://www.raceit.com/Register/?event=37763</span></a></span></span></div>
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<div dir="ltr" id="docs-internal-guid-a4585b1d-dd48-6c2b-ac70-f99be74e3feb" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">This year I am so excited to be traveling back East for the Angels Run. In addition to my attendance, the Master of Ceremony, Max will be there! It is going to be wonderful to see so many people who have not only supported my mom, but also to thank those who have supported Spaceship Max. I am looking forward to an amazing trip and can't wait to see all of my friends and family at the Angels Run on September 24th. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Thank you for the support! </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Love,</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Team Spaceship Max</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;">Facebook Event Page:</span></span><br />
<a href="https://www.facebook.com/events/142797492792104/?notif_t=plan_user_invited&notif_id=1468356101734285"><span style="font-size: small;"><span style="font-family: "times" , "times new roman" , serif;">https://www.facebook.com/events/142797492792104/?notif_t=plan_user_invited&notif_id=1468356101734285</span></span></a><br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-18587084712458751062016-07-03T17:07:00.001-07:002016-07-03T17:12:33.439-07:00Graduating from Giant Steps and Interviewing Max.<div dir="ltr" style="text-align: left;" trbidi="on">
This last month has been full of a lot of emotions. As a mom I have felt sadness, happiness, loneliness and pure joy as I have watched Max graduate from Giant Steps.<br />
When he started Giant Steps Autism Preschool a year and a half ago I was scared. The future was daunting. I wanted so bad for Max just to look at me and say "I love you." <br />
With the help of amazing teachers, especially Amber, Max has grown and developed so much more than I could have ever foreseen 18 months ago.<br />
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Above picture: Max's first day of Giant Steps November 2014.<br />
Below picture: Max and Mrs. Amber on Graduation day June 2016. <br />
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Max still has a lot of growing and developing to do. He is still socially and emotionally behind typical children his age. He will receive speech therapy and occupational therapy (for his food and sensory issues) in kindergarten next year and for many years after. Max is working very hard on his reciprocal communication instead of just repeating what you asked him.<br />
For example:<br />
Mommy: How are you doing Max?<br />
Max: How you doing Max?<br />
Mommy: How old are you Max?<br />
Max: How old Max?<br />
*We are working on him actually answering these questions instead of simply repeating them.<br />
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I sat down next to Max while he was playing with his new pirate ship, garbage truck, and castle and also watching the iPad (Yes he does all of these at the same time) to ask him the following questions: <br />
*All answers are exactly what Max said (or what Max did) to answer each question.<br />
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<b>1. What is something mommy always says to you? </b>A toy mom! <br />
<b>2. What makes you happy? </b>A happy!<b> </b> <br />
<b>3. What makes you sad? </b>I love the T-rex when sad <br />
<b>4. What makes you laugh? </b>I love laugh <br />
<b>5. How old are you? </b>Angry <br />
<b>6. How old is Mommy? </b>You happy mom <br />
<b>7. How old is Daddy? </b>Its good. <b> </b> <br />
<b>8. What is your favorite thing to do? </b>toys! <br />
<b>9. Who is your best friend? </b>Daddy <br />
<b>10. What do you want to be when you grow up? </b>everything <br />
<b>11. What are you really good at? </b>Happy <br />
<b>12. What are you not very good at? </b>(head butts me in the arm) <br />
<b>13. What did you do today? </b>a toy! <br />
<b>14. What is your favorite food? </b>strawberries. <br />
<b>15. What is your favorite song? </b>Charlie Brown (music from the Peanut movie)<b><br /></b><br />
<b>16. What do you want for your birthday this year? </b>I love presents! <br />
<b>17. What is your favorite animal? </b>Ankylosaurus* <br />
<b>18. What is love? </b>I love the present ankylosaurus. (He didn't get this dinosaur for his birthday, we failed as parents this year...) <br />
<b>19. What does daddy do for work? </b>I love happy birthday! <br />
<b>20. Where do you live? </b>big trunk <br />
<b>21. Where is your favorite place to go? </b>I love the school the bus. <b> </b><br />
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<span style="color: #0000ee;">I love my Max <span style="color: #0000ee;">with all my heart. <span style="color: #0000ee;">He is <span style="color: #0000ee;">the coolest. He makes me such a proud mom. And I can't wait for his kindergarten adventures next year. </span></span></span></span><b><br /></b><br />
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*If you are interested in knowing what an Ankylosaurus is click this link. <br />
<a href="http://www.livescience.com/25222-ankylosaurus.html">http://www.livescience.com/25222-ankylosaurus.html</a><br />
And if you see one in the wild, please make sure to take a picture (or buy it) for Max, his parents will pay you back. </div>
Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-66720942419197111362016-05-28T11:54:00.001-07:002016-05-28T12:00:30.326-07:00What Does Autism SPECTRUM Mean Anyway?Autism Spectrum Disorder (ASD) can be a difficult term to understand. It's the "spectrum" part that gets tricky.<br />
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Most people I've talked to are familiar with at least a few of the symptoms of ASD. They know someone with Autism or have read something online. Lots of people have run across something like this diagram on Facebook:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ23iXAuXFfImbmBMlj9-LpzWtMNWhyLn9u4dA1la_WF9yMUN5ToQezu7oBzvbMahPdkBEbg7VLHDkd7m6Eclkns3cfaLHchMBkZ2-cw6qStQifk5_LhRTTIZijJOvca3_GsKHy8wQ6Q/s1600/Autism+Kid+1.jpg" imageanchor="1"><img border="0" height="579" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ23iXAuXFfImbmBMlj9-LpzWtMNWhyLn9u4dA1la_WF9yMUN5ToQezu7oBzvbMahPdkBEbg7VLHDkd7m6Eclkns3cfaLHchMBkZ2-cw6qStQifk5_LhRTTIZijJOvca3_GsKHy8wQ6Q/s640/Autism+Kid+1.jpg" width="640" /></a></div>
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<span style="font-size: x-small;">(Illustration Credit: I couldn't find one. Bummer.)</span></div>
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And that's great. I'm glad that people are getting the word out in easy to digest ways. But there's a problem with this diagram and a bunch of others just like it. It's absolute. It shows a kid with Autism and all the things that affect him. Only, I don't know a single autistic person that is affected by every single one of these things. It doesn't work like that.</div>
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Autism is a spectrum. There are lots of possible symptoms. Each person experiences different symptoms and to different degrees. For Max and Dexter the diagram looks more like this:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1-mAU__kwJ4NIpqHkwyzIIi-BSSTDO_dc1ZGQOE9KwBLj3XKdSr02V-VKhLOC5cQaUYb7ijrssZUydXzRhoV2vXLSqYKMGQxW3UsiFw33tE1YABHhqT7BzJJx_I0jToVNU4efcJN0Qg/s1600/Autism+Kid+2.jpg" imageanchor="1"><img border="0" height="354" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1-mAU__kwJ4NIpqHkwyzIIi-BSSTDO_dc1ZGQOE9KwBLj3XKdSr02V-VKhLOC5cQaUYb7ijrssZUydXzRhoV2vXLSqYKMGQxW3UsiFw33tE1YABHhqT7BzJJx_I0jToVNU4efcJN0Qg/s640/Autism+Kid+2.jpg" width="640" /></a></div>
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And that's just a small portion of the symptoms. There are way too many to put into one diagram.</div>
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For me, the word "spectrum" evokes imagery from science class. The light spectrum is logical. From short wavelength to long wavelength, it's a linear progression.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMg7m1whN1Uz6JGFA3J83M9_WpPg35mQA9S-OmStWz-2vWlBsyTIt6hEydWAy-RFYj-ayrUust3olqYv2gxkDI2FFb3brt_OccDmhxQvWcd3Y3iBYe4JHpvIkqhsQIVXDdRmGr46gS7A/s1600/quality+of+a+light+source.jpg" imageanchor="1"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMg7m1whN1Uz6JGFA3J83M9_WpPg35mQA9S-OmStWz-2vWlBsyTIt6hEydWAy-RFYj-ayrUust3olqYv2gxkDI2FFb3brt_OccDmhxQvWcd3Y3iBYe4JHpvIkqhsQIVXDdRmGr46gS7A/s640/quality+of+a+light+source.jpg" width="640" /></a></div>
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<span style="font-size: x-small;">(Source: eyelighting.com)</span></div>
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The Autism Spectrum is nothing like this. It's not a progression of "less autistic" to "very autistic." I'll let this excellent comic by <a href="http://theoraah.tumblr.com/" target="_blank">Rebecca Burgess</a> explain it: <a href="http://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/" target="_blank">UNDERSTANDING THE SPECTRUM</a>. </div>
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-Will (dad on the spaceship)</div>
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Will Stronghttp://www.blogger.com/profile/13253387218024392823noreply@blogger.com1tag:blogger.com,1999:blog-9192694754614057188.post-50866801854189631392016-04-28T13:52:00.000-07:002016-04-28T13:52:47.532-07:00A small adjustment with huge results. <div dir="ltr" style="text-align: left;" trbidi="on">
When something clicks it is the happiest of happiest. <br />
Max started his new medication about 6 weeks ago. It took us 4 weeks to notice a difference. It took us all 6 weeks to realize how something so small could help in a big way. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg35UJktungN0tr8pEAUr5ymj2X_SHGX4HyftyHes_f41Dgz5sZzOkZ1bjpCsiZrvXpR2ulIA78H-Depgo_cL2V76ocbLTHqn3W5l5S5sSeEEm6eeELCeIz0AMArX9N-NnitKTLH5ifGgzw/s1600/IMG_1099.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg35UJktungN0tr8pEAUr5ymj2X_SHGX4HyftyHes_f41Dgz5sZzOkZ1bjpCsiZrvXpR2ulIA78H-Depgo_cL2V76ocbLTHqn3W5l5S5sSeEEm6eeELCeIz0AMArX9N-NnitKTLH5ifGgzw/s320/IMG_1099.JPG" width="320" /></a></div>
Max hasn't been manic at night. He is on a mood stabilizer so we were hoping the manic behaviors would calm down, and they did! He is happier at school. He has been moving through his programs with greater ease. The biggest thing we have noticed is that his anxiety has decreased. We are getting really positive feedback at school from his teachers, and it makes me so happy. <br />
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<tr><td class="tr-caption" style="text-align: center;">Max has started really loving being surrounded by anything. Tight, small spaces are his favorite. This picture is at school. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><span style="color: #0000ee;"><span style="color: #0000ee;">"He was very happy."</span></span></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpU_Qca83oHR8IXU8HVCLIzJ-8G__jkyaTconhtstQ0Y2GsBDsDUDKO3yu7PQg9YBKLFPJkwHCtZNObtdHOQ0JnKrWgNZAPmjZRT2h4LAN4MQvnRH1ZyxoIZN_l6g4uAoxfDW6FdxSLJl-/s1600/IMG_1105.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpU_Qca83oHR8IXU8HVCLIzJ-8G__jkyaTconhtstQ0Y2GsBDsDUDKO3yu7PQg9YBKLFPJkwHCtZNObtdHOQ0JnKrWgNZAPmjZRT2h4LAN4MQvnRH1ZyxoIZN_l6g4uAoxfDW6FdxSLJl-/s320/IMG_1105.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Max did great at focusing!" </td></tr>
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Max still has all his quirks and still has hard days, but they are not for hours upon hours all day every day. The other night BOTH boys were asleep at 10pm and Will and I found ourselves able to watch <i>Flip or Flop</i> without interruption! It was amazing. <br />
<br />Will and I realize medication isn't for everyone. But we needed to help Max. And for us this has been an answer to a lot of prayers. <br />
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Now if we could only convince Dexter to sleep in longer stretches things would be pretty perfect. <br />
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If only...<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-24941886322401773922016-04-09T16:40:00.000-07:002016-04-09T16:40:08.699-07:00Just let Max be Max <div dir="ltr" style="text-align: left;" trbidi="on">
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<span data-offset-key="f9lb9-0-0"><span data-text="true">Today we took Max to the shark feeding at the aquarium and he loved it. He is OBSESSED with sharks and dinosaurs at the moment. Max isn't the best in crowded situations. He yells, he says things over and over, he flaps and spins. Usually we try to stop him. Today Will and I didn't tell him to stop, or to calm down, or hold his flapping arms. He is his own kid. He doesn't realize he does these things, or when he does <a href="https://www.autism.com/symptoms_self-stim">"stim"</a> or repeat things it is because he is happy or sad. And today he was happy, so why should I stop him? I know socially it isn't "typical" or "acceptable" but he doesn't care. Why should I?</span></span></div>
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<span data-offset-key="b22h4-0-0"><span data-text="true">Today we got every bad look, fake smiles, mean glares, and one guy even asked will to "quiet him down." I wish this didn't happen, but I was prepared for it. I smiled back, or just ignored their rude behaviors. This was a day for Max and his sharks. And also a good day for me to realize that I need to let him just be him. I need to let go of my own insecurities. </span></span></div>
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com1tag:blogger.com,1999:blog-9192694754614057188.post-28250926246234584162016-04-04T16:42:00.001-07:002016-04-04T16:42:18.999-07:00When Sharks Attack and Communication Declines.<div dir="ltr" style="text-align: left;" trbidi="on">
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Max is <u>really</u> into sharks and dinosaurs right now. He is currently playing in the kitchen with 32 large dinosaurs, and about 6 Great White Sharks. He pretends the sharks are in the water on the kitchen floor, and the counter is the beach. He plays like this for hours upon hours every single day. He plays by himself and doesn't want anyone, or anything, touching, moving, playing, or interrupting his Dinosaur and Shark display. Max also makes Dinosaur sounds and pretends he is a dinosaur. Which is cute at first, but Max <i>literally</i> thinks he is a dinosaur. Trying to get him to move away from dinosaur play is a struggle daily. He will stay in dinosaur mode for hours, no words would be used but instead he will growl at you if you try to talk to him. He will jump on the furniture, throw furniture at the wall, and hit if you try to interrupt his dinosaur play. No words. No communication. He does this to avoid doing things and to hide himself in another world. The real world is daunting and scary. His dinosaur world is perfect, and he controls all of it. <br />
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Max made great strides with communication when he first started Giant Steps. Huge strides. Which we expected. He went from not talking to picking up words and more words. Max has what I like to cause a "Box" this box can be full of words, but once new words come in, old words leave. The box has a limit. And that is what we are currently dealing with. People tell us all the time how he is talking more, or how he communicating better. Yes, true, compared to where he was at. But in reality he is 2 solid years behind his peers. If you look at a typical <a href="http://www.asha.org/public/speech/development/kindergarten/">child language development</a> for an almost 5 year old you will notice how far behind Max is. Max in the last 6 months has plateaued. He hasn't made much improvement in language skills. He can't answer simple questions like: What is your name? How old are you? He is working hard at school, but he gets frustrated, and overwhelmed. His poor little brain is doing all the work it can. So right now, as hard as it might sound, Max is at his peak of communication. Could he improve? Absolutely! Will he still be working at language development at school - yes, for sure! But the plan is to also make sure he has other ways to communicate. <br />
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<b>What is he working on at school?</b> These are just some of them.<br />
-Getting dressed on his own. Pulling up his pants, putting on a shirt, etc. <br />
-Recognizing all the letters of the alphabet, and numbers 1-20. (He is good at this one.)<br />
-Writing his name. <br />
-Recognizing familiar people in his life, and saying their name. <br />
-Introductions: this is/that is<br />
-The buddy system. <br />
-Not running off but staying in a line or in a group.<br />
-Not going into dinosaur play while at school. Staying Max all day at school. <br />
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Comparing Max to typical children is hard. It isn't a good indication at how far Max has come. Will and I try not to compare but lets be honest, comparing is a natural. We compare everything in life, from cars to houses, to hairstyles, to grades on tests. It is a social norm. Having a child who is developmentally behind can be frustrating, disappointing, and hard. Will and I still get sad when we see children the same age as Max doing so much more than him. Riding a bike, coloring a picture of what they did during the day, talking about their friends, writing their first and last name, picking out mismatched outfits and making decisions about their day. This in no way means that I am not happy for these children, I am, but they are not MY child. Max is unique, he is developing differently, and different is awesome. But different is also hard, frustrating, and at times not socially acceptable. <br />
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Here is a great video that illustrates these thoughts:<br />
<a href="http://www.huffingtonpost.com/entry/what-people-with-autism-and-their-families-want-you-to-know_us_56fe8e31e4b0a06d58057be6">What people with Autism want you to know. </a><br />
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So if you want to know about Dinosaurs, Sharks, and how to communicate with them Max can be your guide. He is my guide. He is guiding me on a journey that I never thought in a million years I would be on. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8EmV91od_qt8hSq66cNPggam0a-0YD7W2S3BGhKdZl7GnE9-l8S7KXzQ2QRR8te52KJpKrgtzgKGZxcI-4LLJ4qO0YwxBY6w2RWvTZuCYHY_3sW1p1VrWY-rau2WZce-Nlps4XIhjf200/s1600/IMG_0447.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8EmV91od_qt8hSq66cNPggam0a-0YD7W2S3BGhKdZl7GnE9-l8S7KXzQ2QRR8te52KJpKrgtzgKGZxcI-4LLJ4qO0YwxBY6w2RWvTZuCYHY_3sW1p1VrWY-rau2WZce-Nlps4XIhjf200/s320/IMG_0447.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;">On the floor, in the kitchen, wit<span style="color: #0000ee;">h the dinosaurs. </span><u><br /></u></span></td></tr>
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-70732540942456550432016-03-17T13:50:00.001-07:002016-03-17T13:50:23.463-07:00A bunch of confessions<div dir="ltr" style="text-align: left;" trbidi="on">
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Hey, Dapper Dan <br />You've both got your style <br />But Brother, <br />You're never fully dressed <br />Without a smile!</div>
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This is one of my all time favorite songs from one of my favorite movies, ANNIE. I used to watch this daily as a child. <br />
<a href="https://www.youtube.com/watch?v=ry79LzkkDb4">You're never fully dressed without a smile. (Video Link)</a><br />
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I try my hardest to have a smile on my face most of the time. Confession is that this has become a great method to hide my actual emotions. I realize this, I am working on it. <br />
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<b>Confession #1</b> Max has been having a very hard time. It would appear by pictures posted that he is doing well, and in some areas, yes this is the truth. But Max has been very tough lately. He is having manic episodes, combined with very down crying episodes. This started about 6 months ago and it has escalated from home to school.<br />
Last night Max took all the food out of the fridge, organized it by size, shape and color. And while creative and funny it was the start of a downward spiral. His brain and body start moving fast, he makes no sense and starts a very scary and upsetting 1-2 hour manic episode. Last night he broke all the eggs on the floor, slammed his head on the wall, screamed at the top of his lungs while running and throwing all of his toys, and at the end peed all over the food that was on the table. Then as if I turned off a switch in his brain he stops. He crashes. He cried and says "I so sorry Mommy" and places his head on my lap. Then with the help of melatonin he sleeps. This is every night. It is exhausting and very concerning. <br />
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<b>Confession #2</b> Max had an MRI about a month ago. Max has stress spots all over his brain. As much as a 40-50 year old man. He doesn't have seizures, but this is just a scary. Your brain has natural stress spots, most disappear and heal. Max shouldn't have many, he is 4. But his brain goes 100 miles per hour until he eventually crashes. He can't self regulate. It is effecting his whole life. <br />
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<b>Confession #3</b> We are going to a psychologist next week. We need some help and guidance. While medication isn't the answer for everyone, and every child. We have done everything in our power to help him. We know there is a stigma about medications and being evaluated, but we need help. We need to advocate for Max because he can't advocate for himself. <br />
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<b>Confession #4</b> Will and I are not super parents. We are not stronger, wiser, more amazing, or better than any other parent. We have two boys who need a lot of TLC, and any parent would do the same given the situation. You would. You could. I am friends with a lot of parents in the special needs community and every one of them of course has days where they wish their child could have a "typical" childhood, but they wouldn't change their child. Max and Dexter have made me a better person, not just a mother, but an overall person. I am more accepting of others, I am more patient, I am a better teacher, wife and friend. <br />
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These two boys have opened my eyes to the world of Autism. And I am so proud to be a part of it. <br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com2tag:blogger.com,1999:blog-9192694754614057188.post-87472685798376004942016-02-24T11:22:00.000-08:002016-02-24T11:33:59.682-08:00Giant Steps Auction 2016<div dir="ltr" style="text-align: left;" trbidi="on">
Hello wonderful friends and family!<br />
<br />
For the last 2 years, Max has attended Giant Steps, an amazing preschool just for autistic children. When dealing with Autism, early intervention is very important. One March 31, Giant Steps is having a charity dinner and auction.<br />
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The auction raises funds to pay for field trips, occupational therapy, music programs, classroom supplies, and a bunch of other fantastic stuff. Our family wants to raise enough money to sponsor a table at the event. We are organizing a donation team called "Spaceship Max" and we want you to join! Your donation, combined with the donations of other friends and family, will make a big difference in the lives of some very special kids.<br />
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Please help us give back to a school that has changed all of our lives. Giant Steps has helped us to enter Max's world.<br />
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For more information on how to donate go to <a href="http://friendsofgiantsteps.org/">friendsofgiantsteps.org</a>. When you make a donation, either by PayPal or by check, be sure to note that you are a part of team "Spaceship Max." Use the memo line on a check, and to <i>donate</i> online click the donate button on the website. Then once directed to paypal type a note by clicking on "add special note to the seller" line.<br />
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Thank you, from Will and Tiffany Strong<br />
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*A special thank you to Bryan Sours Photography for taking the amazing pictures of Max.<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-8163010727304154552016-01-08T09:54:00.001-08:002016-01-08T09:54:34.290-08:00Autism can be complicated. <div dir="ltr" style="text-align: left;" trbidi="on">
A much needed update on my sweet Dexter. <br />
Something I have learned over the past 2.5 years of Dexter's life is to always go with my gut. I have always thought there was something going on with Dexter, and it was more than just a virus. And in between all the blood work, doctor visits, specialists, and sleepless nights I knew there was something else going on with my sweet little boy. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRTjgXoXi8TXzu0427G6em_Xki-739f6ZE9lnrr6NPowYh13K2Ul5PX8esuRxKEDJ49JpjyS455i0GdiK8L-DspdnnHHfPX2rjDJUEZUr1W4DNTL04amn6-Z7o9m8KRpk66hU-Yqo7Wyvl/s1600/IMG_9656.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRTjgXoXi8TXzu0427G6em_Xki-739f6ZE9lnrr6NPowYh13K2Ul5PX8esuRxKEDJ49JpjyS455i0GdiK8L-DspdnnHHfPX2rjDJUEZUr1W4DNTL04amn6-Z7o9m8KRpk66hU-Yqo7Wyvl/s320/IMG_9656.jpg" width="320" /></a> </div>
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In November I sought out a second opinion about what I have continued to notice with Dexter. I am so grateful for Dr. Heather Harrison and her listening ear. Because of her in December we were able to have an EEG and MRI of his brain done. It was noticed in
the EEG that he was having seizures. <br />
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We then were sent to a
Neurologist. We finally got into the Neurologist yesterday. Dexter has Autism
induced Epilepsy. This is common with kids with Autism. (33% of kids
with autism have epilepsy) The doctor (Dr. Nelson in Provo) was very knowledgeable with
children with autism and he was great at answering our questions.
Dexter is going to be starting a daily medication that he will take most
likely forever. The medication will need to be adjusted, like all
medications, as he grows. There are side effects, but hopefully we will
see minimal. He goes back for follow-ups monthly. Then twice a year
visits once the medications are stable. <br /><br />Dexter is
autistic, and epilepsy is a side effect. Most likely his sleep issues
are from autism and also the seizures. We are hopefully that once the
seizures are under control his sleep will improve. There are a lot
doctors who don't know about autism, but there is a lot doctors know about
seizures. So we are grateful for that. Over stimulation is a primary
cause of seizures for children on the spectrum. We need to start being more aware of what overstimulates Dexter and what makes his brain seize and body shake. <br /><br />Here is a good article explaining the links and what Dexter has been dealing with since birth:<br /><a href="https://www.autismspeaks.org/family-services/epilepsy" target="_blank">https://www.autismspeaks.org/<wbr></wbr>family-services/epilepsy</a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWTYA0qv5r05OmEt6JLG2Tnh0kJAAZjQfDSWJqAiYOWzkVIm2-fP-ujZTG0Gis-KrHTq0sfaMu8Bx3y4lMLhnicATpJc6chx88RGG79NpOvvBXHh1qr6KAZ2D_2yDnuxPHxApHI8TtOOou/s1600/IMG_9669.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWTYA0qv5r05OmEt6JLG2Tnh0kJAAZjQfDSWJqAiYOWzkVIm2-fP-ujZTG0Gis-KrHTq0sfaMu8Bx3y4lMLhnicATpJc6chx88RGG79NpOvvBXHh1qr6KAZ2D_2yDnuxPHxApHI8TtOOou/s320/IMG_9669.jpg" width="240" /></a><br />
Dexter is a very strong little boy to have been dealing with this since birth. He has been dealing with night terrors, fevers, failure to thrive, growth issues, headaches, daily seizures, little sleep, and psychotic episodes (uncontrollable screaming, shaking, not knowing where he is, hallucinations, etc). But if you know Dexter you will notice he is a very happy kid. This is a huge blessing. I am so glad he hasn't lost his sense of happiness through all of these trials. <br /><br />Thank
you for all your support. We know our family is
complicated but Will and I honestly wouldn't have it any other way, we don't know any other way. </div>
Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com10tag:blogger.com,1999:blog-9192694754614057188.post-41963629513164565602015-12-17T09:09:00.001-08:002015-12-17T09:09:56.212-08:00Merry Christmas 2015<div dir="ltr" style="text-align: left;" trbidi="on">
Merry Christmas from Spaceship Max! Thank you for all the love and support over the last two years. It has been a huge source of comfort to have so much love sent our way as we travel through life with our two special boys. We hope that you continue to follow our journey. Have a wonderful Holiday with your family and friends! Much love, Will, Tiffany, Max and Dexter. <br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-62741418798630299802015-11-28T16:14:00.001-08:002015-11-28T16:14:13.435-08:00Underwear Required<div dir="ltr" style="text-align: left;" trbidi="on">
Max lives in a very naked world. Underwear required. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaNFfZE6BdTcABF8RKMztUHtnTQC5xVHdJmv_a7QDRjfbzHADGEb9QPy3IsSrpq025v_bRTzNn7Gu0iJoslmrmJ470czE0PTsqIjfdKzeb39NnnOgaD83wbJ56KgAvCxhaO2wirXIwu1T/s1600/IMG_8453.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaNFfZE6BdTcABF8RKMztUHtnTQC5xVHdJmv_a7QDRjfbzHADGEb9QPy3IsSrpq025v_bRTzNn7Gu0iJoslmrmJ470czE0PTsqIjfdKzeb39NnnOgaD83wbJ56KgAvCxhaO2wirXIwu1T/s320/IMG_8453.JPG" width="240" /></a> </div>
Max is now potty-trained which was a HUGE deal! <br />
He still wears pull-ups at night, but most nights will wake up dry and go potty right when he wakes up. It has been life changing. He gets so excited about going and screams "I did it!" after every success. But beyond being potty trained his sensory issues have taken a huge nose dive. <br />
He hates clothes and takes them off any chance he gets. Now, we understand that being naked is a part of childhood, and it is "normal", but Max screams, cries, fights, and tantrums over the thought of getting dressed. He has taken his clothes off in inappropriate places and we have had to fight to put them back on. He doesn't like the feeling of anything on his skin, not matter what fabric. He tolerates it when he is forced. We do know that cotton clothing and soft materials are more tolerable than others. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjgotA-C-Lxcw0o2JQKSx-2A_e5M-eks5d_Ez08RPJbmQyDsqovmHzAZxSrlmEWSDclXgndB1iMs2VEtKjUSsXtTE7b-xdNbbnRZQXl6EbDuC1gflYXWw61IfHHQhATpZDrxLtdteKMoUk/s1600/IMG_8943.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjgotA-C-Lxcw0o2JQKSx-2A_e5M-eks5d_Ez08RPJbmQyDsqovmHzAZxSrlmEWSDclXgndB1iMs2VEtKjUSsXtTE7b-xdNbbnRZQXl6EbDuC1gflYXWw61IfHHQhATpZDrxLtdteKMoUk/s320/IMG_8943.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At school he wears these noise blocking earphones to help block noise. </td></tr>
</tbody></table>
Dexter has his own sensory issues. He doesn't like anything covering him while he sleeps, he hates loud noises and gets overwhelmed in loud places. Dexter is starting to become very picky with textures of food, and just like Max, is starting to drink more of his diet than eat solids. We are trying different methods to get Dexter to eat, and when either Max or Dexter requests something to eat we are happy to oblige for them. We just need both of them to get calories. People are always shocked when they hear how Max eats because he is off the charts in height and weight, but Dexter isn't even on the charts and can use the calories!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHxcwtRw_Wq6sOFdjrHufVtQ35bfuAd5yVKWXIM2_-8ioBLHtq72w30r348K5cLzMMblR8ujA2MZE58T5K61tItufy5-zNilQ6oO7x207gBmzBGEKgfIE2HzkFbSpgiJ_5nQyE500o5ur/s1600/IMG_8448.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHxcwtRw_Wq6sOFdjrHufVtQ35bfuAd5yVKWXIM2_-8ioBLHtq72w30r348K5cLzMMblR8ujA2MZE58T5K61tItufy5-zNilQ6oO7x207gBmzBGEKgfIE2HzkFbSpgiJ_5nQyE500o5ur/s320/IMG_8448.JPG" width="240" /></a></div>
One thing that Will and I wish people would understand about Max and Dexter is how overwhelmed they get in large groups, on holidays, and anything that is out of the norm. For example, Thanksgiving Day was spent at Aunt Katie's house. We had a great time, and Max and Dexter actually did great. Max had one major melt-down but other than that the day went smooth. On the way home Max got fixated on a helicopter that he played with at his Aunt's house. This turned into a tantrum that lasted all the way home, and then into the night. It took us two hours to get him calm and into bed once at home. Then the next day his body was exhausted and he spent most of the day calming his brain down. He spent so much of Thanksgiving trying to stay calm which takes a lot of brain power for Max. We have to pick and choose how many events we do in a day and in a week because too much can really be hard on our whole family once we get home. <br />
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Holidays and social situations have changed for us. But our boys are teaching us that it is okay to be different. Different is good. </div>
Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-7185701070445015802015-11-06T12:18:00.001-08:002015-11-06T12:18:44.145-08:00Overwhelmed on Halloween<div dir="ltr" style="text-align: left;" trbidi="on">
Being overwhelmed is such an awful feeling. <br />
It can be described as: <br />
<span><span class="oneClick-link">-to</span> <span class="oneClick-link oneClick-available">overpower</span> <span class="oneClick-link">or</span> <span class="oneClick-link oneClick-available">overcome,</span> <span class="oneClick-link oneClick-available">especially</span> <span class="oneClick-link">with</span> <span class="oneClick-link oneClick-available">superior</span> <span class="oneClick-link">forces;</span> <span class="oneClick-link oneClick-available">destroy;</span> <span class="oneClick-link oneClick-available">crush.</span></span><br />
<span><span class="oneClick-link oneClick-available"><span><span class="oneClick-link">-to</span> <span class="oneClick-link oneClick-available">cover</span> <span class="oneClick-link">or</span> <span class="oneClick-link oneClick-available">bury</span> <span class="oneClick-link oneClick-available">beneath</span> <span class="oneClick-link">a</span> <span class="oneClick-link oneClick-available">mass</span> <span class="oneClick-link">of</span> <span class="oneClick-link oneClick-available">something</span></span></span></span><br />
<span><span class="oneClick-link oneClick-available"><span><span class="oneClick-link oneClick-available"><span><span class="oneClick-link">-to</span> <span class="oneClick-link oneClick-available">load,</span> <span class="oneClick-link oneClick-available">heap,</span> <span class="oneClick-link oneClick-available">treat,</span> <span class="oneClick-link">or</span> <span class="oneClick-link oneClick-available">address</span> <span class="oneClick-link">with</span> <span class="oneClick-link">an</span> <span class="oneClick-link oneClick-available">overpowering</span> <span class="oneClick-link">or</span> <span class="oneClick-link">excessive</span> <span class="oneClick-link">amount</span> <span class="oneClick-link">of</span> <span class="oneClick-link oneClick-available">anything</span> </span></span></span></span></span><br />
<div class="def-block def-inline-example">
<i><span class="dbox-example"><span><span class="oneClick-link">(a</span> <span class="oneClick-link oneClick-available">child</span> <span class="oneClick-link oneClick-available">overwhelmed</span> <span class="oneClick-link">with</span> <span class="oneClick-link">presents;</span> <span class="oneClick-link">to</span> <span class="oneClick-link">overwhelm</span> <span class="oneClick-link oneClick-available">someone</span> <span class="oneClick-link">with</span> <span class="oneClick-link">questions.)</span></span></span></i></div>
<div class="def-block def-inline-example">
<i><span class="dbox-example"><span><span class="oneClick-link"> </span></span></span></i></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link">I get overwhelmed and anxious when I have to much scheduled in one day. I start the day feeling tied and worried about the long-jammed-packed day ahead. I also get overwhelmed if I get behind on grading and the piles are stacking up against me. </span></span></span></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link"> </span></span></span></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link">This year for Halloween we were prepared for Max to be overwhelmed by the end of the two day holiday. This year Halloween was two days because it was celebrated in school on Friday and also on the actual day of Halloween. </span></span></span><i><span class="dbox-example"><span><span class="oneClick-link"></span></span></span></i><span class="dbox-example"><span><span class="oneClick-link">This year was better than last year, and I am sure in years to come will be even better than the last. </span></span></span></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link"> </span></span></span></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link">Max gets overwhelmed easily. He doesn't lash out, or hurt himself like he used to, but he gets very emotional and screams and cries. His overwhelming behavior might not be apparent until later that night or the next day. His mind can only take so much stimulation and once it hits maximum capacity he spins downward. He goes into manic behaviors especially at night. He can't fall asleep, he talks very fast and in gibberish, he cries, and can get physically violent. It is very hard to watch. This is why we have to be careful as parents to pick and choose what activities we do around the holidays. We want Max to be involved but not at his expense. </span></span></span></div>
<div class="def-block def-inline-example">
<span class="dbox-example"><span><span class="oneClick-link"></span></span></span><br /><div style="text-align: left;">
<span style="font-size: x-small;">Children and teens having a manic episode may:</span></div>
<span style="font-size: x-small;">
</span><ul class="ul_default" style="text-align: left;">
<li class=" generic-container"><span style="font-size: x-small;">Feel very happy or act silly in a way that's unusual</span></li>
<li class=" generic-container"><span style="font-size: x-small;">Have a very short temper</span></li>
<li class=" generic-container"><span style="font-size: x-small;">Talk really fast about a lot of different things</span></li>
<li class=" generic-container"><span style="font-size: x-small;">Have trouble sleeping but not feel tired</span></li>
<li class=" generic-container"><span style="font-size: x-small;">Have trouble staying focused</span></li>
<li class=" generic-container"><span style="font-size: x-small;">Do risky things.</span></li>
</ul>
<span style="font-size: x-small;"><span style="font-size: small;">This year Max had two packed days. Between his classroom party and then trick-or-treating on Saturday with his cousins Max was done. Saturday night he was up until 2am and mad at the world. Will and I knew this would happen, and we prepared for it. But finally on Sunday his body crashed. He wanted to do nothing but sit and watch his i-pad. Which we let him. He needed his brain to relax. He needed to re-focus. It is all about balance and being okay with taking a day (or even two) to regroup. And yes, that means Max has a lot of "screen" time, and yes we are okay with this. </span></span></div>
<div class="def-block def-inline-example">
<span style="font-size: x-small;"><span style="font-size: small;"> </span></span></div>
<div class="def-block def-inline-example">
<span style="font-size: x-small;"><span style="font-size: small;"> We are learning on step at a time. </span></span></div>
<div class="def-block def-inline-example">
<span style="font-size: x-small;"><span style="font-size: small;"> </span></span></div>
<div class="def-block def-inline-example">
<span style="font-size: x-small;"><span style="font-size: small;">This year the boys were Mario Brothers. It was a perfect, simple, cotton costume. </span></span></div>
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<span style="font-size: x-small;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxLdJXDvHFK0VPA8WY_surME52nMYdlSD-s-BtpX2IqmKp3-DO1Og1d3ha5c9VxmJ5JkDDQNn5XIrr2M_wFk8eLunD49RrrV_OrDpbG-xeuAprzmoLkoWYXY24Vvw8p9BQZDboZDzwztZK/s1600/10406623_10153707696153688_2003615147005680027_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxLdJXDvHFK0VPA8WY_surME52nMYdlSD-s-BtpX2IqmKp3-DO1Og1d3ha5c9VxmJ5JkDDQNn5XIrr2M_wFk8eLunD49RrrV_OrDpbG-xeuAprzmoLkoWYXY24Vvw8p9BQZDboZDzwztZK/s320/10406623_10153707696153688_2003615147005680027_n.jpg" width="320" /></a> </span></span></div>
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<span style="font-size: x-small;"><span style="font-size: small;"> </span></span></div>
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<span style="font-size: x-small;"><span style="font-size: small;">Past costumes:</span></span><br /><div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCKEv83ExWe8XTcfH8sYUOqVNDfADlycwKLVU6vka7dZ31qMT4zlLXqesR5de81BUJ6VRdLl92CrY_hrx4sZqxGSoqu4Pz8bFGPWTkpfavQ390cRLKi2Q8Jjv2ATkg7qcHdS6nfCzt-wP6/s1600/10702032_10152863286123688_3263033393612889397_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCKEv83ExWe8XTcfH8sYUOqVNDfADlycwKLVU6vka7dZ31qMT4zlLXqesR5de81BUJ6VRdLl92CrY_hrx4sZqxGSoqu4Pz8bFGPWTkpfavQ390cRLKi2Q8Jjv2ATkg7qcHdS6nfCzt-wP6/s320/10702032_10152863286123688_3263033393612889397_n.jpg" width="320" /></a></div>
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Max's First Halloween:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDetQKewIQLJIxN-GgXCU611BSfll2fPQpg7GR3mzOBZpgtJ65AWeI2p7z3-D11gDiScHQvMNpUGUjJTCYOGzOubLFdcUAh7Ntp_mEA-y9gKFWHlirQOgSxVh-oehVBNDIBhacM2bBKvhZ/s1600/393715_10150436365418688_1898714425_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDetQKewIQLJIxN-GgXCU611BSfll2fPQpg7GR3mzOBZpgtJ65AWeI2p7z3-D11gDiScHQvMNpUGUjJTCYOGzOubLFdcUAh7Ntp_mEA-y9gKFWHlirQOgSxVh-oehVBNDIBhacM2bBKvhZ/s320/393715_10150436365418688_1898714425_n.jpg" width="240" /></a></div>
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<span style="font-size: x-small;"><span style="font-size: small;"> </span> </span></div>
<span><span class="oneClick-link oneClick-available"><span><span class="oneClick-link oneClick-available"><span> </span> </span></span> </span> </span></div>
Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com2tag:blogger.com,1999:blog-9192694754614057188.post-295413692407724122015-10-13T18:31:00.003-07:002015-10-13T18:33:50.934-07:00It's a Horse!<div dir="ltr" style="text-align: left;" trbidi="on">
Last week Max's preschool class went to Farm Country. A field trip with 12 preschool kids on the spectrum is like herding cats (cats with serious sensitivities to light, sound, and crowds that can easily overstimulate them and make them behave unpredictably.) So it's pretty important to have at least 147 parent volunteers on hand. I was there. It was fun.<br />
<br />
Max was very much excited to go to Farm Country. In school they had been learning all about farm animals for weeks. At least, I assume so; Max came home singing E-I-E-I-O every day. He doesn't have a lot of vocabulary to work with, so when new words show up it's easy to notice.<b> </b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheVXae8HcSztJE79ePDLvF2ISSskJq7OH9sCF01ZfyKMDh-QBLBrO2r0Kdn96dEGGt3RbpZDPswE7prqBOQrOVO4YNCR5FjCxPzgNqcpe4l8TW9c0I8rpcJA_SVJqLPMzrbidUMC4E1g/s1600/It%2527s+a+horse.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheVXae8HcSztJE79ePDLvF2ISSskJq7OH9sCF01ZfyKMDh-QBLBrO2r0Kdn96dEGGt3RbpZDPswE7prqBOQrOVO4YNCR5FjCxPzgNqcpe4l8TW9c0I8rpcJA_SVJqLPMzrbidUMC4E1g/s320/It%2527s+a+horse.jpg" width="202" /></a></div>
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We went to Farm Country as a family about a year ago, before Max was attending Giant Steps (his special needs ASD preschool.) A year ago, Max wandered around Farm Country, not engaging with his environment, constantly trying to run away, and hardly even noticing the animals. He could have been in a dirt field, full of weeds and his reaction would have been about the same.<br />
<br />
But this time he couldn't wait to see everything and to name it as loudly and energetically as he could. The first animal he saw was a huge, black horse. This particular horse is right up front and has a sign that says "Please pet me." Max's saw him and ran right to him. "It's a horse!" he said. "It's a horse! It's a horse! It's a horse! It's a horse! It's a horse! It's a horse It's a horse!"<br />
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And Max actually reached out to pet the friendly animal. I was so proud of him. Honestly I got a bit misty.<br />
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Progress is progress no matter how small.<br />
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-Will (the dad)<br />
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Will Stronghttp://www.blogger.com/profile/13253387218024392823noreply@blogger.com1tag:blogger.com,1999:blog-9192694754614057188.post-39281271661334829622015-09-27T16:09:00.001-07:002015-09-27T16:09:25.747-07:00Give me the tools<div dir="ltr" style="text-align: left;" trbidi="on">
When I was in Junior High my Dad built a large wood soccer kick board in our back yard. I grew up in rural New Jersey and we had a good amount of yard space to practice any sport we were playing. This wood back board became a tool to help me develop the skills I needed in the various sports I played. I vividly remember throwing and catching lacrosse balls using the back board. I remember playing one-on-one matches with my dad using the back-board as my goal. It was a resource which I used to help me improve. It also was a way to bond my Dad and I. We spent hours outside together. We would talk about sports, school, my dad would give me advice, and I would tell him goals I had for the future. The simple tool of a back board was a special connection with my dad. <br />
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<tr><td class="tr-caption" style="text-align: center;">My back yard in New Jersey.</td></tr>
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When Max was born I was so nervous to be a mom. I loved him with all my heart and soul, but I didn't know what I was doing. Parenting was something new, and it was something I didn't go to school for. I read books on parenting, on sleeping, on nursing and having a happy well adjusted baby. But when Max started not hitting basic milestones, was socially behind his peers, and I was unable to connect with him I didn't feel like a good parent. I failed. I was failing my child. I wasn't doing something right. Max would spend hours screaming all day, would physically hurt himself, and was unable to communicate. As much as I wanted to understand, I didn't. I was frustrated, depressed, and worried that I was not a good mom. <br />
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Then a miracle happened. We talked to our pediatrician and explain the things we have been observing with Max. He comforted us and told us there is help. He also told us that we were not bad parents, but instead we are parents of a special child who is going to need our help to navigate through life. At age 2.5 Max was diagnosed with Autism. This was a year and a half ago. And since then I have been gathering tools that allow me to enter his world. The diagnosis WAS NOT the end of the world, it was the beginning of a brand new one. It was a world that I am so lucky to be a part of. Autism has helped me reach both my children. It has helped me be a better mother, wife and teacher. <br />
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Max has been the best guide in the world. He is a fantastic example of unconditional love, kindness, stubbornness, and devotion to his love for life. He struggles, we all do. But at least now he has parents who have tools to help him be successful! Having two children with Autism gives us even more tools because what we have learned works with Max might not work with Dexter. We have to be constantly learning. <br />
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Autism isn't a label for my family, it is a tool, a guide, and a world that connects me to my boys. <br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com2tag:blogger.com,1999:blog-9192694754614057188.post-17588005277113425722015-09-14T13:35:00.003-07:002015-09-14T13:35:46.967-07:00It take a Village<div dir="ltr" style="text-align: left;" trbidi="on">
There are some days I sit and cry. I cry with frustration, with tiredness, with negative thoughts that I can't be the mom my boys need. And every single time I have had a moment, or even a full day like this I have had a friend or family member reach out to me and offer to help, or just talk, or even just take a drive around the block. (<a href="http://www.sodaliciousutah.com/">Sodalicious</a> has become a major stress relief in my life.) I can't tell you how grateful I am for these moments, and for the village Will and I have formed to help raise our two special boys. <br />
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People often ask "What can we do to help?" or "Do you and Will need anything?" <br />
We don't know how to answer this. Our personalities are not one who ask for help. We like to serve. We like to help and be helpful to others. So asking for help is hard. But we are learning. <br />
<br />There are not many people who can watch Max and Dexter. They are hard boys and I totally understand make people nervous. Dexter is so anxious to be without Will or myself and will cry for hours. Max can bolt at a moments notice, and honestly that scares me. Then Max and Dexter both have sensory issues with food. So we tend to do everything as a family. We go everywhere together and travel as a pack. It is just easier. <br />
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There have been so many people who have helped us. So many people who have come to our rescue and have made our lives easier. The emails of support, the texts on hard days, and the middle of the phone calls mean the world to us. Will and I feel so lucky to have such a huge village. It is the stranger in the food store who helps me when both of the boys are melting down in the busy parking lot. Then there are the group of BYU boys who live across the street from us who have on multiple occassions cleaned up our outside toys and have saved Max when he has run into the street. These acts of kindness make me have so much faith in humanity. <br />
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This past weekend we took part in <a href="http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=1137386">The Utah Walk for Autism Speaks</a>. We created a team for Spaceship Max. We didn't have any expectations for the walk and we really just wanted to go and be a part of the <a href="https://www.autismspeaks.org/">Autism Speaks</a> event. I was blown away by the support we had. We had many who supported us by donating to our team and then we had a great group of friends who came and walked with us. The event was loud, which for an Autism event was strange, but all and all it was a great morning! Our family is blessed with so much support. <br />
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<tr><td class="tr-caption" style="text-align: center;">I love my family! </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Super hero dad</td></tr>
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-29755987699533351012015-08-27T20:52:00.000-07:002015-08-27T20:52:02.571-07:00Every Child is Different<div dir="ltr" style="text-align: left;" trbidi="on">
Every single child is different. <br />
They learn different. <br />
They each have unique qualities that make their individual personalities. <br />
They react to situations differently.<br />
And over the past four years of being a mom I have learned that both of my children are as different as they come. <br />
But one thing is for certain they both crave love. They want to be understood and loved. And it is my hope that Will and I are doing that for both of them. <br />
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When Dexter was born two years ago both Will and I knew Max and Dexter would have a close bond. Will witnessed one of the cutest events when Dexter was just a day old. Dexter had some breathing issues at birth and was in the nursery receiving oxygen. When Max came to the hospital to meet Dexter, Will went to the nursery to get him. Will leaned into Dexter's bassinet and said "Time to go meet your brother." And Dexter smiled big and proud. He knew how much he already loved him. Max at the time wasn't expressing many emotions but as soon as Dexter was brought in the room Max put all his cars straight into his bassinet. Brotherly love is deep with these two!<br />
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Dexter has had sleeping issues since birth. And we have seen so many specialist and had so much advice given to us about sleep. I have followed my mommy gut on a lot of decisions. We as a family do not believe in the cry it out method. Plus Dexter was physically hurting himself at night if he was left to scream and cry. He would go into full panic mode, and has had many bruises to prove it. He has never slept through the night and wakes up anywhere between 3-8 times. <br />
Dexter still nurses and that really has been a blessing. It is the only thing that calms him. And on really bad nights even nursing won't settle him down. <br />
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Dexter also has sensitivity to noise. Especially deep noises, or loud pitches. This past weekend we were in Salt Lake with my Dad and we ate at Kneeders. Every once in a while a high pitch beep would be heard from the kitchen. Dexter would whimper and cover his ears. <br />
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Dexter is very smart. I know, I know I am his mom but I have never met another 2 year old that knows the alphabet upper and lower case, his numbers 1-20 (can say them and recognize them) and has now started to realize that letters form words. He has known his letters since about 18 months or even earlier. It has become a huge obsession just like Max's obsession with trains and wheels. <br />
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About nine months ago we started noticing some concerning signs with Dexter. Some were the same that we saw with Max and some were very different. We talked to Max's teacher and also to our pediatrician and determinded that we needed to get him evaluated for Autism and Anxiety disorder. The process has changed in the past 18 months because of insurance companies taking a more active roll in Autism treatments, which is a good thing, but makes the process long.<br />
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This past Monday we went to our final meeting with our case worker and psychiatrist. And it was determined from all the testing we have done over the past few months that Dexter has a speech delay, Sensory Processing Disorder (SPD), anxiety disorder, and has Autism Spectrum Disorder. This was not a shock to Will or I, but it is still a diagnosis you don't wish upon your child. We are prepared for the life that this means for our family with two special needs children. We have already started fighting for Dexter just like we do for Max. <br />
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We are very grateful for our family and friends who love, support, and listen to us on the hard days. Thank you. It truly takes a village. <br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com2tag:blogger.com,1999:blog-9192694754614057188.post-58340274735712217682015-08-25T20:08:00.000-07:002015-08-25T20:08:19.142-07:00Conquering fears<div dir="ltr" style="text-align: left;" trbidi="on">
Last summer when my Dad came to visit we went to Park City and decided to give the Alpine Coaster a try. We thought Max would love it because it is a car/train that you get to ride in. Little did we know that after waiting in a line for 90 minutes Max would panic once it was his turn for a ride. You can read about that experience <a href="http://www.spaceshipmax.blogspot.com/2014/07/look-but-dont-touch.html">here</a>. <br />
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This past weekend was a whole different story. My dad came to visit and we again went to Park City to see if Max would try the Alpine slide and then the Alpine Coaster. We had no expectations, we just knew once he got on he would love the whole experience. His brother Dexter is a dare devil and we knew he would want to ride everything also. <br />
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We went on a weekday and during school hours so the park wasn't crowded. We did the Alpine Slide first. We road the ski lifts up to the top of the mountain. Max did GREAT on the ski lift. He was excited and kept saying "so high" and "look train!"<br />
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The Alpine Slide was a huge hit. I think I was more nervous than Max was. He sang <a href="https://www.youtube.com/watch?v=05Oo0YxOQlk">"Mickey Mouse Road Rally"</a> the whole way down at the top of his lungs. Will and I were singing along and cracking up. Max was so happy and had no care in the world. It was awesome! <br />
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When we got to the bottom Max immediately wanted to "do it again!" This time we bought tickets for the Alpine Coaster. This was the same ride that last year he was scared and didn't want ride. The line was short. It was only about a 30 minute wait. When we got to the front of the line we asked Max what color car he wanted to sit in. He said blue. Then we asked who he wanted to ride with? He said "Ride with Poppi!" I had tears in my eyes, I was so proud of him. We all rode the coaster, and the whole time my dad said Max was saying "Poppi go faster!" When the ride was done he screamed "That was AMAZING!" I didn't even know he knew that word. <br />
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I realize that him being scared is more of an age thing rather than an Autism issue. I know that being scared is a normal life feeling. But the fact that he is <u><i>feeling</i></u> is what makes this whole event so special. He is recognizing his own feelings. He knows when he is excited, happy, and scared and more importantly can express these feelings. Expressive language is something that children on the autism spectrum really struggle with. They need to be taught how to appropriately express feelings and not just tantrum or scream. Max made me so proud this past weekend. And I can't wait to ride the coaster again!<br />
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Strong Clanhttp://www.blogger.com/profile/16887250220155396495noreply@blogger.com0tag:blogger.com,1999:blog-9192694754614057188.post-19881374859731185202015-08-12T09:21:00.001-07:002015-08-12T09:21:30.140-07:00iPads and AutismHi, it's the dad again. My name is Will.<br />
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It's not a secret that tablet computers are great learning tools for kids with ASD. It's been <a href="http://www.cnn.com/2012/05/14/tech/gaming-gadgets/ipad-autism/" target="_blank">reported on</a> many times. There are even <a href="http://www.jstor.org/stable/23879637?seq=1#page_scan_tab_contents" target="_blank">really boring scholarly articles</a> written about it.<br />
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I want to give a shout out to some of the best learning apps I've come across. Max and Dexter both love these apps. You should check them out for your kids wether they are on the spectrum or not. Really good stuff here.<br />
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<b>Endless Alphabet:</b> I can't say enough about how great this app is. It teaches letters and vocabulary. It is beautifully designed and animated. And it has TONS of personality and fun. Endless Alphabet, Endless Reader, Endless Numbers, Endless Word Play. Get them all. Seriously.<br />
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<b>Loopimal:</b> This one teaches cause and effect relationships. And it's crazy fun. I'll even play with it sometimes. It's kind of brilliant.</div>
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<b>Sago Mini Space Explorer:</b> There are a whole bunch great of apps made by Sago Mini but my kids' favorite is the Space Explorer. They can be a bit pricey but if you watch you can find them on sale or in discount bundles. A lot of people would say that these apps are "just for fun" and aren't really "educational." But those people are dumb and don't understand just how important fun is in the life of a child.</div>
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These apps are great for any young child really. Check them out.</div>
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<br />Will Stronghttp://www.blogger.com/profile/13253387218024392823noreply@blogger.com2