tag:blogger.com,1999:blog-278172432024-03-19T05:15:17.968-04:00Life With JoeyAutism pervades our lives in a way akin to the way having a child pervades your life. The toys lay scattered not just in the bedrooms, but also in livingroom, kitchen, diningroom, bathrooms. Trying to put them away is useless; I might be able to fool someone for an afternoon that I don't have small children, but why would I? Even when everything is put away, you turn around and step on a matchbox car. They live here.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.comBlogger1525125tag:blogger.com,1999:blog-27817243.post-65672648090740655192017-06-07T10:15:00.001-04:002017-06-07T10:15:24.492-04:00Sunflowers<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZM00U_lVkMDJCj6k_k252XTIo2R3nUXjP3bX1uBlOR-WtEgJrNMSc9Jc3RdNYeSW_AfBgwjgtVLSg2C83OkWqdD_Vg8e3OU3xhd7P9l78FAJZsfIy9BodAs4vLQNzeSFqeEZg/s1600/123959490_1.jpg" imageanchor="1"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZM00U_lVkMDJCj6k_k252XTIo2R3nUXjP3bX1uBlOR-WtEgJrNMSc9Jc3RdNYeSW_AfBgwjgtVLSg2C83OkWqdD_Vg8e3OU3xhd7P9l78FAJZsfIy9BodAs4vLQNzeSFqeEZg/s320/123959490_1.jpg" width="320" /></a><br />
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I watch him in a room full of people, a store or a park or a fair where the throngs swirl and eddy about us, and I see how alone he is there. I worry.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3w2XEHyZSCfs1yHHBMPmA6ArxsXMN7Z6hkbns0WcqDjQfqF90eKWtURMzzgPp2HxfQaSSEEfwznkn8DOVR_8fKhUo9NvaOl58ep4QDbZdeFkd8DGVkru4AyOnPDB6dtgB2Rdz/s1600/IMG_7898.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3w2XEHyZSCfs1yHHBMPmA6ArxsXMN7Z6hkbns0WcqDjQfqF90eKWtURMzzgPp2HxfQaSSEEfwznkn8DOVR_8fKhUo9NvaOl58ep4QDbZdeFkd8DGVkru4AyOnPDB6dtgB2Rdz/s320/IMG_7898.jpg" width="240" /></a>Don't worry, they say, he's going to be OK. He's going to be fine. He's smart and funny and he loves people. He wants to interact with them. He smiles and laughs and loves everybody. I see the intensity of his joy and his love. I see the intelligence burning behind the fumbling attempts to connect and try to bring people into that world, to enter their world, to bring them together. I see him trying to touch those lives.<br />
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I worry because I remember.<br />
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Holding a photo in my hand, me at 14, 15, 17, 20. I remember what it was like to be in rooms full of people and all alone. I remember the giddy feeling of finally making a connection, clinging to it as a lifeline, sometimes- just like my baby- a little too close or a little too tightly. I remember how much it hurt to grow up and try not to explode all over, and not to lose oneself out in your own world. I remember running in the rain, finally with other people like me, and then being ripped away to go back to a reality that thought I was too tall, too fat, too weird, too smart, too ugly, too much, and had no compunction against telling me so.<br />
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I remember watching them from the distance. I remember finding that being next to them didn't matter. I could be dead in the center of their space, and completely invisible, or so visible that every flaw was shoved into my face.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisgcalCLkxR69poHPHe-W2gkk-S4yMblJoAqekIzzw-JM0KEIPa5Fk7lDa70KPOYSGtOC9zusgkURFoNeNtOQaDfSaQeFljG0ieIK3Hm4gKzfpSBJpZetnIDjaZXtRQbjBQ4Le/s1600/IMG_7922.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisgcalCLkxR69poHPHe-W2gkk-S4yMblJoAqekIzzw-JM0KEIPa5Fk7lDa70KPOYSGtOC9zusgkURFoNeNtOQaDfSaQeFljG0ieIK3Hm4gKzfpSBJpZetnIDjaZXtRQbjBQ4Le/s320/IMG_7922.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT3cc9HsNY7fzX7P2PoRoq8tjtZfZ_AdFUE4jFqxTjlAbSzep96aLA5Jyjh-pnHZoQb97Rx3TeP-9z_TCl4x_vDT7Ktd_G4LKWiN63HCiu_C9412vNikK50XPDDmMQnQpo-Rl1/s1600/IMG_7762+%25281%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT3cc9HsNY7fzX7P2PoRoq8tjtZfZ_AdFUE4jFqxTjlAbSzep96aLA5Jyjh-pnHZoQb97Rx3TeP-9z_TCl4x_vDT7Ktd_G4LKWiN63HCiu_C9412vNikK50XPDDmMQnQpo-Rl1/s320/IMG_7762+%25281%2529.jpg" width="228" /></a><br /><br />I look at the photo and don't see a girl who was fat, or weird, or ugly. She looks beautiful. Overwhelmingly, majestically, almost too beautiful. I try to remember that was me. Then sometimes I try to forget, because it hurts. After all these years, it is still agony. Time had blunted it for a while, but now I have my boys. I remember. If they could reject and scorn that beauty, that wonder of a child, what pain will my boys have to endure? Why should they have to?<br />
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<span style="text-align: center;">Being alone in a throng of people hurts. Watching them swirl by, I know what Kirchner meant. I know why van Gogh wanted to paint. I wonder if this is what it is to be a masterpiece. I want to run in and hug them, both of them, and tell them. My social Pied Piper and my gregarious ham, the yin and yang of my boys. </span><br />
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<span style="text-align: center;">Masterpieces, both of them. I see my brother's face as they turn, his loping gait as they walk across the baseball field or jog in front of me in the park. I remember 13 and 15, and the stark differences between them. I look at what my boys can do, what they cannot do, and I worry. </span><br />
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<span style="text-align: center;">It is hard, becoming a work of real art. I realize they both have the pith to bloom through it. </span>Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com14tag:blogger.com,1999:blog-27817243.post-34802523369641321372017-05-05T10:45:00.003-04:002017-05-05T10:47:52.467-04:00Community means all of us. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTyPH04UkF68lOZd9Yvo2vWDhdHARQNNF2imhJ2wa5BymTcKnQawais6zDIsDjJ0qSev5lQ2SsI8P8sY0v7b4rsyxOjHAup3TIlBUA6jvf3PrGApuIt0nZSaFhUqviDvBgWGcU/s1600/IMG_6271.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTyPH04UkF68lOZd9Yvo2vWDhdHARQNNF2imhJ2wa5BymTcKnQawais6zDIsDjJ0qSev5lQ2SsI8P8sY0v7b4rsyxOjHAup3TIlBUA6jvf3PrGApuIt0nZSaFhUqviDvBgWGcU/s320/IMG_6271.jpg" width="240" /></a>When Joey was little and we were just starting out in special education, Joey's teacher told us to always bring a photo of him to the IEP meeting. The point was to make sure that no one lost sight of the fact that Joey was wasn't just a name on a piece of paperwork. He is a human being.<br />
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Being me, I made a Powerpoint. I started with slides about who Joey was as a person- what he liked, things he was good at, and lots and lots of pictures. This is the child we are trying to help. Then I laid out what help he needed and what we felt his goals should be.<br />
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I still make them for big IEP meetings. It is important. You have to look into that face and tell me why you think he deserves less than anyone else. I no longer have to take those Powerpoints in to the meetings, though.<br />
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I take Joey.<br />
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This is HIS LIFE. He deserves it, and has the same right to it, as everyone else. The same as you.<br />
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Yesterday, the House of Representatives voted to repeal, instead of analyze and refine, the law that gives my Joey the opportunity to have health insurance. In this country, where healthcare is treated as a commodity and luxury for profit, health insurance is an absolute must for everyone. When profit is the bottom line, costs spiral wildly, and every middle man adds his share. This includes the insurance itself- we add our money into a pool, and the more people in the pool, the less the risk per person for anything they might need. The insurance people then invest that money and hope not too many people need too much, because they want to profit. If too few healthy people are in that pool, the whole collapses. Basically, for-profit healthcare is a big pyramid scheme, and people who actually get sick are at the bottom of that pyramid. Without insurance, you go broke when your health hits a hiccup; you may even die from lack of care.<br />
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Or people born with issues that insurers see as medically significant. Not all "pre-existing conditions" are from people making mistakes. As we learned before the laws changed to help all people, autism is a significant pre-existing condition. Because it is a pervasive neurological condition, ANYTHING can be connected to it, especially by the insurance company, who seems to think their opinion is far more important than the expertise and opinion of your doctor in what is "medically necessary."<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkjvvchGJvjd2BWXNZO8pYscRzALj6a5ndDR7uymiDEekiq8hub_KSaetLLiOJJ6bYQ_ZfkzF2jR8eMUb0C0JE5WwVALfAn5vJglbVv3UApW0Dz2zR_nGj0rRcG9_vWxZuf1FA/s1600/IMG_6938.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkjvvchGJvjd2BWXNZO8pYscRzALj6a5ndDR7uymiDEekiq8hub_KSaetLLiOJJ6bYQ_ZfkzF2jR8eMUb0C0JE5WwVALfAn5vJglbVv3UApW0Dz2zR_nGj0rRcG9_vWxZuf1FA/s320/IMG_6938.jpg" width="240" /></a><br />
The House bill converts Medicaid to block grants with federal spending cap. That means the long waitlists for people like my son, waiting to get the healthcare assistance they qualify for, will get longer. When that block runs out, people like my son won't be able to access medical care at all.<br />
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Let's be clear: If you cannot afford something, you cannot access it. It is not available to you. There are lots of big mansions out there, but they are not available for me to live in, because I cannot afford to pay for one. A weekend at the beach is out of my reach because not only can I not pay for it, but I would need time off from work to go, and transportation to get there. Having life-saving and life-changing technology is useless if those who need it cannot access it.<br />
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When we chop healthcare and community supports, we are chopping Joey's opportunity to be an independent person. We restrict the possibility of him becoming a tax-paying member of society; and we need those taxes to help others in our community who need our help.<br />
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That is what communities are for. That is what they do. They bring us together so we can all help out. We are all in this together.<br />
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This is the young man you want to throw away, because he is autistic. He has a pre-existing condition, and thus can be denied health insurance, and thus denied healthcare access.<br />
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If you think my son, and people like him, are a waste of your tax dollars, I recommend re-evaluating your ideas of community and morality. After all, we should have learned long ago that we all get sick, we all grow old, and we all die. If you think you can face that all alone, without the human community, you are in for a very rude awakening.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX7qjvx5rvhkZGC9u8bQt7P0YRozBl5sEHZA_23CKZgtg6S04NpWZAS477M0yxrnpLxben98KKsLxR-eFcibPVRH2SvyXHvX7ZbrczYmg-QkSD76If9UN9I76w69bk0xnBQyoX/s1600/IMG_6697.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX7qjvx5rvhkZGC9u8bQt7P0YRozBl5sEHZA_23CKZgtg6S04NpWZAS477M0yxrnpLxben98KKsLxR-eFcibPVRH2SvyXHvX7ZbrczYmg-QkSD76If9UN9I76w69bk0xnBQyoX/s320/IMG_6697.jpg" width="217" /></a>Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com6tag:blogger.com,1999:blog-27817243.post-31074817930973170612017-04-10T00:21:00.001-04:002017-04-10T00:21:35.769-04:00Happy Birthday, Little Man<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNTGXtCKI1oKLQ-oywip5XpplixM-TaK8IUDEhmp4aRPiA3zrkXis0YtzbDeaEH6zNf0pOOhH_HBwlMANVRFdtNdC4Zl5eMouZqX9ZRaLcaj4xKldAXAK8WGOFcp2CPkcn1SYU/s1600/0dnewjoey1+copy.jpg" imageanchor="1"><img border="0" height="228" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNTGXtCKI1oKLQ-oywip5XpplixM-TaK8IUDEhmp4aRPiA3zrkXis0YtzbDeaEH6zNf0pOOhH_HBwlMANVRFdtNdC4Zl5eMouZqX9ZRaLcaj4xKldAXAK8WGOFcp2CPkcn1SYU/s320/0dnewjoey1+copy.jpg" width="320" /></a><br />
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The baby there? He's fifteen years old today.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ22lOpoyetZXV3PbEeuDT2FNHvZmX6KlpopL49F9YVhTeovkOYL5D0HILk3eVmUwR6c5PfckuA79taEv_nIc8S8wbQMPCRU11AvAPy8GNaxdOcMimFxbAbTLg74c5-qvmnGi4/s1600/1dgrandma1+copy.JPG" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ22lOpoyetZXV3PbEeuDT2FNHvZmX6KlpopL49F9YVhTeovkOYL5D0HILk3eVmUwR6c5PfckuA79taEv_nIc8S8wbQMPCRU11AvAPy8GNaxdOcMimFxbAbTLg74c5-qvmnGi4/s320/1dgrandma1+copy.JPG" width="320" /></a><br />
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He was just a little Buddha Baby.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie1s3Lykif5qf76YnE9_8R-5UCx1Uj3VyWjHNAnPMGZmAZQxowshgVyZrm0RQrWqshMtV8MrFU0DmCo2XU99XuoB4aPu9ZLuujxZoJSuXTPlrYYSSDo0AZUnvaEsVJVNOF6RBA/s1600/newmom2+copy.JPG" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie1s3Lykif5qf76YnE9_8R-5UCx1Uj3VyWjHNAnPMGZmAZQxowshgVyZrm0RQrWqshMtV8MrFU0DmCo2XU99XuoB4aPu9ZLuujxZoJSuXTPlrYYSSDo0AZUnvaEsVJVNOF6RBA/s320/newmom2+copy.JPG" width="320" /></a><br />
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So brand new.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO4QAJcV1yP4y1embdOEymHo4r13y399P6W1cYKChUG3f1svnnh1Uh4yYk0Xz4b3IRZiMb09MZJFkF-vU3yDdPSua0iWrI39Y7PYvZBvVSVaTik-75zUVVIoG0qgw6-Ge37TOd/s1600/IMG_6517.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO4QAJcV1yP4y1embdOEymHo4r13y399P6W1cYKChUG3f1svnnh1Uh4yYk0Xz4b3IRZiMb09MZJFkF-vU3yDdPSua0iWrI39Y7PYvZBvVSVaTik-75zUVVIoG0qgw6-Ge37TOd/s320/IMG_6517.jpg" width="240" /></a><br />
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Time flies when you are having fun.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com6tag:blogger.com,1999:blog-27817243.post-226359700990626942017-04-08T23:32:00.002-04:002017-04-08T23:32:45.975-04:00More Aikido!I'm thinking we may have finally all recovered from colds, allergies, and strep... so back to Aikido! The boys learned some new moves today!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6IjuMhm3-eXTWbMXWO-0iawuo8wFKrubDHG1MlOYT7DyVIgmV0TRw_fafJHiK5jEqiqLhqemF_q8tpkHPwimRWDXv-26TfpiX7TfqFMPUC4rvj_jvkp5-xf7VMUGyRFbc8M8g/s1600/FullSizeRender-5.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6IjuMhm3-eXTWbMXWO-0iawuo8wFKrubDHG1MlOYT7DyVIgmV0TRw_fafJHiK5jEqiqLhqemF_q8tpkHPwimRWDXv-26TfpiX7TfqFMPUC4rvj_jvkp5-xf7VMUGyRFbc8M8g/s320/FullSizeRender-5.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS0tDZKq6i007K-Nif47wPtsl2KqenN0tbBPM1mQb-vR1Zl1WKr74zzSiQdharEfHj7lp4APDrY-n2Wno2vzkFLJQXn0bW0b1gnX2gFWJ-6ICXanLacXM7M0SSbDC1qfvTcQyx/s1600/FullSizeRender-3.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS0tDZKq6i007K-Nif47wPtsl2KqenN0tbBPM1mQb-vR1Zl1WKr74zzSiQdharEfHj7lp4APDrY-n2Wno2vzkFLJQXn0bW0b1gnX2gFWJ-6ICXanLacXM7M0SSbDC1qfvTcQyx/s320/FullSizeRender-3.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsBK0_Sm6OrwOfbD0PTplHXCn5LuvxBJgMqUj50IpiZYIj8GeKM5pIazyAu3Ioth504ydOFOgjqFEmSPHD1ZeeCyfIf-Sg-Ve39Su45MrEFHDPJmeoQE994KXJuVm-hbLEqpUV/s1600/FullSizeRender-6.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsBK0_Sm6OrwOfbD0PTplHXCn5LuvxBJgMqUj50IpiZYIj8GeKM5pIazyAu3Ioth504ydOFOgjqFEmSPHD1ZeeCyfIf-Sg-Ve39Su45MrEFHDPJmeoQE994KXJuVm-hbLEqpUV/s320/FullSizeRender-6.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjotY5Qq862XSo8SerUrtsVOqLs5ymwcs_NJeFAdYzWCTrxael2dNEZLlS2dDPyATEkTkwW_ZnzNKY1QJKoIrrAswSbxnn6mDoa5zAiDeOQ_1u_77WMbft64nDwAPpysTQN-zYS/s1600/FullSizeRender-2.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjotY5Qq862XSo8SerUrtsVOqLs5ymwcs_NJeFAdYzWCTrxael2dNEZLlS2dDPyATEkTkwW_ZnzNKY1QJKoIrrAswSbxnn6mDoa5zAiDeOQ_1u_77WMbft64nDwAPpysTQN-zYS/s320/FullSizeRender-2.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_m6yArT8madfIexpBQoL-8NeszaRZxhCRzS84-L4DX1Lvm_e55mPZEHCRF7EVGoLkYCEhD3RvF64-jAA7WnaRE2FEz8CfVSkt1zMlBJxtz-_KW1MNMyD_WKnX2TvQBmdhRn9N/s1600/FullSizeRender-7.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_m6yArT8madfIexpBQoL-8NeszaRZxhCRzS84-L4DX1Lvm_e55mPZEHCRF7EVGoLkYCEhD3RvF64-jAA7WnaRE2FEz8CfVSkt1zMlBJxtz-_KW1MNMyD_WKnX2TvQBmdhRn9N/s320/FullSizeRender-7.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr5jQnP3eOjbnYVi3x45RlUzZwlZsT-M0-AkfgG6bApM0TpqKf2_JgZV2xjEoURMCjjfQQ8n9d1z7zir0iusnnCC8bDS0wIFO_kyEuBuv1-nYBjpzrjwMAuJRadavKrwpBddW3/s1600/FullSizeRender-4.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr5jQnP3eOjbnYVi3x45RlUzZwlZsT-M0-AkfgG6bApM0TpqKf2_JgZV2xjEoURMCjjfQQ8n9d1z7zir0iusnnCC8bDS0wIFO_kyEuBuv1-nYBjpzrjwMAuJRadavKrwpBddW3/s320/FullSizeRender-4.jpg" width="240" /></a>Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com3tag:blogger.com,1999:blog-27817243.post-70251237117275525402017-04-02T23:16:00.002-04:002017-04-02T23:16:39.650-04:00Baseball!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLciIKKjwG0Sc_x1yglntEGik4DcFuxGjRKroQyP2kLO5U7b0QOts8W5FHCGg9Sgb5GKflt9XHb-5eEMY8-bT0N81I__UwjgaW2wXSWYGsRuUDZmm1kquvtrcnFE1DnnbulCGs/s1600/539920_10212726929626723_7070114199329060904_n.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLciIKKjwG0Sc_x1yglntEGik4DcFuxGjRKroQyP2kLO5U7b0QOts8W5FHCGg9Sgb5GKflt9XHb-5eEMY8-bT0N81I__UwjgaW2wXSWYGsRuUDZmm1kquvtrcnFE1DnnbulCGs/s320/539920_10212726929626723_7070114199329060904_n.jpg" width="240" /></a><br />
<br />
Joey LOVES playing baseball. We are on the Marlins again this year, meaning we have the awesome coaches again, and Joey is super-excited to be on the field! He likes being one of the Big Kids, who hits the ball, often on the first swing, and gets it all the way to the fence! HIs goal is to hit an over-the-fence home run!<br />
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I got him new pants this year, and he is super happy. Aikido and baseball, we should be getting in shape super quick!<br />
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I may need to take up a sport myself to keep up with him...Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com3tag:blogger.com,1999:blog-27817243.post-86860496733998443242017-03-25T09:00:00.001-04:002017-03-25T09:00:50.069-04:00On the MoveThe boys have taken up Aikido!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDu_k9vy-lU-FfRzjt7Wu8hu8jBH9jHhekCDH3E9VKJPjhsGPbe5kqSdZRgZdeXEWzEI3kM6p72pwVi2kt82v8rcAbtHx1ZrUFBHtDDYl8EgewCiysiuqW7xAMLLUrjGzymmXk/s1600/FullSizeRender-1.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDu_k9vy-lU-FfRzjt7Wu8hu8jBH9jHhekCDH3E9VKJPjhsGPbe5kqSdZRgZdeXEWzEI3kM6p72pwVi2kt82v8rcAbtHx1ZrUFBHtDDYl8EgewCiysiuqW7xAMLLUrjGzymmXk/s320/FullSizeRender-1.jpg" width="320" /></a><br />
There is a class here that works with special needs students, and it has been perfect. Good pace, excellent sensei (teachers), and they love it.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYcE8Bn3JKLrgUveuOeZOp_p8SFTbR4DH95iFEDF48nZ6a1vocm1lnphBTt18XUQDteEe5TfSv_xITyz9IjD93ro0LZE3GslzpBKtSSHRNVZ5-fDnQ_UAVBWkY_4T_4HB6qB0d/s1600/FullSizeRender-3.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYcE8Bn3JKLrgUveuOeZOp_p8SFTbR4DH95iFEDF48nZ6a1vocm1lnphBTt18XUQDteEe5TfSv_xITyz9IjD93ro0LZE3GslzpBKtSSHRNVZ5-fDnQ_UAVBWkY_4T_4HB6qB0d/s320/FullSizeRender-3.jpg" width="320" /></a><br />
The boys don't have a lot of activities they can do together, so this is very exciting for them!<br />
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Also, baseball starts today!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8er0bTFrY_MFukUH5F8HAFk1ZjhEeOUqEvmiKyvynntJrSEk0msGmaW-MVR_JcQmhk2YRBHiLimgRQfjOvguzZuWjAUflQkaw43Jsknf42O5916FlaXzIHahcNPufaoJEK76F/s1600/IMG_4251.JPG" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8er0bTFrY_MFukUH5F8HAFk1ZjhEeOUqEvmiKyvynntJrSEk0msGmaW-MVR_JcQmhk2YRBHiLimgRQfjOvguzZuWjAUflQkaw43Jsknf42O5916FlaXzIHahcNPufaoJEK76F/s320/IMG_4251.JPG" width="240" /></a><br />
Allan is coaching again this season, with our favorite co-coaching team, Mike and Lisa. Joey is super excited to be playing the Orioles today!Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com2tag:blogger.com,1999:blog-27817243.post-63313947618655529502017-02-06T00:21:00.002-05:002017-02-06T00:21:22.792-05:00Looking so grown up!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYG0kweTWL1X6LQO8JPB796jIRDbPm08Qpx3vMtb9841DSE5JsEuzFODLJMxvl8VJQOOn0rKulmoT1l1qEhKEu1f3XM1KCXlanC2yfP5o8hEKCmkYa9lfycSx96KDYenHuFiv/s1600/IMG_5237.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYG0kweTWL1X6LQO8JPB796jIRDbPm08Qpx3vMtb9841DSE5JsEuzFODLJMxvl8VJQOOn0rKulmoT1l1qEhKEu1f3XM1KCXlanC2yfP5o8hEKCmkYa9lfycSx96KDYenHuFiv/s320/IMG_5237.jpg" width="240" /></a><br />
Joey and his young lady.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrkg_NCx9KMQszfBzoLNiVpbnQdYbyXZ3KfwSV4Y74qRe6jrsOt3uXrNVm8DWFGx-ZM5d0aehPtdBAxYwuZvLuEhroIQI-KmTqho_NBGE7mSklpysK58y87YlzLyU6J8ddFJE3/s1600/IMG_5375.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrkg_NCx9KMQszfBzoLNiVpbnQdYbyXZ3KfwSV4Y74qRe6jrsOt3uXrNVm8DWFGx-ZM5d0aehPtdBAxYwuZvLuEhroIQI-KmTqho_NBGE7mSklpysK58y87YlzLyU6J8ddFJE3/s320/IMG_5375.jpg" width="240" /></a><br />
Ready for school!Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com2tag:blogger.com,1999:blog-27817243.post-65225587581553693532017-01-28T02:56:00.002-05:002017-01-28T02:56:27.311-05:00Dear Mr. TrumpJoey has a message for you, Mr. Trump.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHcF8A0eFshKLtx0IjY2mH96dIJrzXQDsRsp7ZlIp9Lm6CNybAoAcR-9oMAi9WBS_5BIdkXpgPFkrrhRpqthn29YUOftdivTHhvpKQ_vTegvJh0eHRJaENGOJOdK4WSEBcqVUy/s1600/joey_speech.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHcF8A0eFshKLtx0IjY2mH96dIJrzXQDsRsp7ZlIp9Lm6CNybAoAcR-9oMAi9WBS_5BIdkXpgPFkrrhRpqthn29YUOftdivTHhvpKQ_vTegvJh0eHRJaENGOJOdK4WSEBcqVUy/s320/joey_speech.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Joey wanted me to send this to the president, but he also asked me to share it.</td></tr>
</tbody></table>
<br />
Joey is angry about Trump. We don't talk politics around the house, partly because its complicated and Joey gets things very black and white. Another reason is that my husband and I have very different political views, and we prefer not to hash them out in front of the children.<br />
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Joey saw Mr. Trump mock Mr. Kovaleski even before I did. (I don't care if he was mocking Mr. Kovaleski in particular or disability in general, it's all the same to us). That happens when you send kids to school- they see things. You can't control it. However, he has been livid about Trump ever since. Joey knows ugly insults when he sees them, and he saw this one immediately.<br />
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When Trump became the candidate for the Republicans, he was livid. When he won the election, he was livid. Sworn in, livid. He just cannot fathom how "such a horrible person" could be voted into the presidency, an office Joey holds in high esteem. The idea of blocking immigrants is his latest anger-inducing tidbit. Joey is <i>livid</i>. He says he wants to teach Mr. Trump how to be a good person, how to be kind to people. He has said he wants to go to Washington and share his social skills training with Mr. Trump.<br />
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Joey's latest coping trick is to proclaim that he is going to run for president himself. I am not discouraging this <i>at all</i>. But with all the anger bursting out, and my march, we have been talking about how one gets their voice heard. Marching isn't the first step. Writing your representatives is a great first step, and so we talked about that. Even as a 14-year-old, it is something he can do.<br />
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I encouraged Joey to think about what he would say to Mr. Trump if he had the chance, and then write it down. The picture above is what he typed up to send to our President.<br />
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I think it is a good thing for us all to read, think about, and live by.<br />
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We can make the whole world a better place. Let's do that.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-4246666121197008202017-01-21T23:35:00.000-05:002017-01-21T23:35:02.257-05:00We Are All Unique: We Are All Human<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheDQ-eg0mEs1Urg4c2CLc7kZdEUkpqoX1gy7sLsA6lK-edi2zdyLHuoK2AZP1wmATxOtfabinEzhJ6JCmUS3yuZvReBNyetFIqcFjuuBTudoXXLey1ITI7wHzd5EwaUR9HsIP6/s1600/16195546_10158213389820457_4080185196863232765_n.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheDQ-eg0mEs1Urg4c2CLc7kZdEUkpqoX1gy7sLsA6lK-edi2zdyLHuoK2AZP1wmATxOtfabinEzhJ6JCmUS3yuZvReBNyetFIqcFjuuBTudoXXLey1ITI7wHzd5EwaUR9HsIP6/s320/16195546_10158213389820457_4080185196863232765_n.jpg" width="320" /></a><br />
<br />
I marched in Washington, D.C. today.<br />
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My mom and I took the train up, and the crowds were insane. We finally made it to 12th St and the Mall (Smithsonian metro station), and watched people streaming in from everywhere. Solid rivers of people, and they just kept coming. They carried signs, with all sorts of ideas. Women's rights. Minority rights. Religious rights. Disability rights.<br />
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Human rights.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnNJRAdRbcy7_Lt1YtbDDOKgASocQ6o0J_f9EeaVF00V0PK8K5gl5Jvgz40F4kaGxcwvOLEROHmSqEQP5p4zNtiT5G52BGMK0yVxSHBW35d_OLeUxWja85GWAYcFPUShBBLnVi/s1600/16195650_10212023378438383_2443075772365684788_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnNJRAdRbcy7_Lt1YtbDDOKgASocQ6o0J_f9EeaVF00V0PK8K5gl5Jvgz40F4kaGxcwvOLEROHmSqEQP5p4zNtiT5G52BGMK0yVxSHBW35d_OLeUxWja85GWAYcFPUShBBLnVi/s320/16195650_10212023378438383_2443075772365684788_n.jpg" width="240" /></a>Like<a href="http://www.seussville.com/books/book_detail.php?isbn=9780394800783" target="_blank"> Horton's Whos</a>, we felt we needed to be heard. After two years of ugly, horrible bigotry spewed all over the media, all over the world, and right here in our own election, we needed to stand up and stop being ignored. We need to stand up and say that belittling others, mocking them, assaulting them, insulting them, this is wrong. This is unacceptable. To have anyone in any office who thinks it is OK is an insult to humanity, and insult to our country, and an insult to YOU. Because you are a human being.<br />
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We are all human beings.<br />
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Why is that so hard for people to grasp?<br />
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There is a basic principle we try hard to teach my kids. Grasping it is the #1 mark of maturity. It is super simple.<br />
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<b><i><u><span style="font-size: large;">Treat others as you would want to be treated. </span></u></i></b><br />
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Not "as you are treated." Not "as you think they ought to be treated." Imagine you are that other person. How would you want to be treated? With dignity? Respect? Privacy? Understanding? Compassion? Empathy? I hope so. Treat other people that way. It is just that simple.<br />
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If you are feeling ignored in this country, you have the right to take to the streets and shout. You have a right to make yourself heard. That is one thing the First Amendment guarantees as a basic right of every citizen.<br />
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My son has those same rights. I have those same rights. You have those same rights. It is frustrating, aggravating, depressing, and annoying that so many people just cannot grasp that concept.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnaAzqJbLoyH0XkYplRqiFLd2ymy0qw1pWpxN-kWxe_0J584jkHiof8tWyu5QM7uq2Jic0lB6Sd0A1itGAQlXiQo9A51JgKhvD1XYubbNyKzNBpXr2wJ0HbG465rqi3C2Q8G52/s1600/IMG_4287+%25281%2529.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnaAzqJbLoyH0XkYplRqiFLd2ymy0qw1pWpxN-kWxe_0J584jkHiof8tWyu5QM7uq2Jic0lB6Sd0A1itGAQlXiQo9A51JgKhvD1XYubbNyKzNBpXr2wJ0HbG465rqi3C2Q8G52/s320/IMG_4287+%25281%2529.jpg" width="240" /></a><br />
<br />
This is Joey. This is autism.<br />
This is a human being.<br />
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-77753568662590787792016-12-30T23:48:00.000-05:002016-12-30T23:51:14.394-05:00Our House for the Holidays<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBxccaySmDiSbGy58lc_WNzPQbRYCDsuLfVVhMBig3AVSborvkoIuxyiaHjtmPLw8sTE6fIzccQAmNpGgXozWCATxJkQGwtT4-GtqY_1VoYCzEqHTcHBa-gJHT0kkDM2ycpSg/s1600/IMG_4722.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfedODfFEoQSdgrAMzBVslsTOYMVdJUIJz0PPDx39JX9s-6_UVC2IuNjNqEbymF49fVMf4SoOg7SQGzf2QO_eLfxuQjHDMTe1Z5MGNTZnG8VA65U5Ii7592RpudhJdbUsXBFpT/s1600/IMG_4369.jpg" imageanchor="1"><img border="0" height="240" 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imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvP_MFzKKvZDvfQzSm-c5Sk2CqVfwRGj4EGYJ0WHQfyUbaKeGtkR6gRKz7niVXzI39AeRMwirjIoIQGjLKL5dbQelpTQSpxm0ib6jvwXGMJx8PyvKyB9ixRJ8Lkk9DZFNato7N/s320/IMG_4427.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcaus4ogeyRXY-d_diIDmaHHU7cq4RZoCI_ZoXV9yESQaM50ny8e6t5I-s8WVJxTK5BewfpmWThpcR0EvRQyTTiAuBuA80fmqxtVMPNoBpo3-jqrN5XSsTss5MD1UiI1qMVTx/s1600/IMG_4626.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcaus4ogeyRXY-d_diIDmaHHU7cq4RZoCI_ZoXV9yESQaM50ny8e6t5I-s8WVJxTK5BewfpmWThpcR0EvRQyTTiAuBuA80fmqxtVMPNoBpo3-jqrN5XSsTss5MD1UiI1qMVTx/s320/IMG_4626.jpg" width="320" /></a><br />
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-91223752830045426012016-12-29T19:55:00.004-05:002016-12-29T19:55:38.318-05:00Hello, Grandmom Ann!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Really. Call us.</td></tr>
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-39807112443892291732016-08-17T01:43:00.001-04:002016-08-17T01:43:17.012-04:00Some meetings are just Hard. When you have a kid with special needs... support needs... differences that affect their ability to function in a world not designed for differences... well, you go to a lot of meetings, and learn a lot of acronyms, and talk a lot about challenges and supports and needs. Lots. Of. Meetings. You spend a lot of time telling your life story and your kid's life story to people who have half a clue of what you are trying to communicate to them, hoping that your narrative rings a bell in the room and gets your kid what s/he needs, and quickly. You have to make your case to a committee of people, often not knowing whether their goal is to help your kid or help their budget. Sometimes you know its all about that budget, whether it should be (or is even legal to be) or not.<br />
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To be honest, we have been very, very lucky. As hard a road as we've traveled, most of the people we have met along the way have at least wanted to try to help. Some folks were more sincere and stronger about it than others, and the more these people are for advocating for your kid, the better off your kid will be. We've had some people who thought they were trying to help, but actually weren't. We had a few people who honestly couldn't have cared less. We had a saboteur, but not as many as we have seen other folks have to deal with.<br />
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By far the biggest surprise has been out FAPT committee people. FAPT is the "Family Assessment and Planning Team." In other words, its the committee for social services that when you need services, you go to them and state your case. You get there if you need something from local social services. In our case, we landed in FAPT because Joey needed a special school, and they are the folks who pay for it for the school system.<br />
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They have been the most totally supportive set of people we have come across in our adventure.<br />
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When we go into the meeting, they want to know how Joey is doing. They want to know if the services they are paying for are helping, or if we need to do something else. They want to know if he is getting enough speech therapy and occupational therapy. They were thrilled when Joey wrote them a letter expressing how happy he was at school last year. They were thrilled when he made an appearance last month at the meeting. At least, they acted that way, so even if they were just being polite, it was appreciated.<br />
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Our case manager is the school social worker, who puts together a package to present before we even walk in the door, so often I am out of there in about fifteen minutes. How's that for a meeting?<br />
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The only meeting that is harder is an IEP meeting.<br />
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See, one thing you have to do when you are going to FAPT is you have to lay out the reasons you still need them to pay for these services and schools. You have to explain that yes, things are better, but we still have these challenges. They want to get him back into regular school, and you have to face the fact that this is not only never going to happen, but you have to explain it to the committee why this is where he needs to be. I was doing this every three months. Even for just fifteen minutes, you find your heart broken for your child. At least these folks say things like, "wow, you are doing a great job, glad this helping! What else can we do?"<br />
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This morning, I had to go in and ask for a something else they can do. It was the hardest meeting I have ever been to, ever.<br />
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Let me lay out the process for getting a disabled child mental and behavioral support in this part of the world right now. You have an issue, which may or may not land you in an emergency room or being reported to CPS. You decide it is time to call in extra help. You pick up a phone and make that call, the one that just tore you to pieces to have to make. They ask if you have Medicaid. If you do not have Medicaid, about 80% of the time, they may as well hang up on you, because they won't even really talk to you. Medicaid only. If you are waiting for a waiver, or haven't applied, you are just screwed. They do not even accept private pay. Medicaid only.<br />
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You finally find someone who takes insurance and/or private pay, or will at least let you talk about making an appointment. But they won't make that appointment, because you need to have a VICAP. This is the Virginia Independent Clinical Assessment Program, and what it means is you have to be assessed to see if you need mental health or behavioral support services. It is only done through the Community Services Board (local social services) and the BHA (Behavioral Health Authority). So you have to call the local social services board and try to get someone to do this. Once you get someone to understand what you are even talking about, they tell you that they can't make the appointment until you go to FAPT, because you don't have Medicaid.<br />
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They do not care that you are willing to pay for this thing. They do not care that you are saying your kid is in crisis. You MUST go through FAPT to get this assessment that you need because unless you have it, no one will help your kid, and he needs the help NOW, because what you are saying by even asking about this stuff is that your kid is a potential danger to himself and/or others.<br />
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No wonder people fail to get mental health services in this country. I cannot imagine being the person in crisis and having to navigate this mess.<br />
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Before you go to FAPT, you have to call and ask your medical insurance if they will cover any of this. Your insurance tells you that they don't cover this because your kid is too old. I have no idea what people do if they need behavioral support as adults (for example, if you have anger management issues or an alcohol problem). I guess you get Medicaid or go through FAPT, whether you like it or not, because that's the gatekeeper to these services. Or just walk into an emergency room and hope. I don't want to think about what happens if you start getting this kind of run around and break down, just trying to access services, even when you are willing to just pay for them.<br />
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So I go to FAPT, and have to explain why I need a VICAP for a 14-year-old that they saw just last month looking bouncy and cheerful. I had to sit there and explain exactly what we were seeing, what was happening, and explain that the danger was immediate and significant. I had to go into specifics I won't go into here, and incidents I won't write about here.<br />
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Some meetings are just Hard.<br />
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This was one of those meetings I left with an appointment for an evaluation and assurance of funding, and all I wanted to do was go home and hug my baby boy, and let him know help was coming.<br />
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A few days ago I was driving with Joey and Andy, I think we were headed home from Grandma's house, and I mentioned the possibility of therapy. I asked him if he wanted some new ways of dealing with big emotions- anger, frustration, embarrassment. We talked about what happens now, and I asked if he would like to learn to do something different. He said yes. Not his "yeah" that he gives when he's not really interested or listening but knows you want an answer and affirmative is a good bet. Not that "uh huh" of a teenager shrugging me off. He said, "Yes." He looked at me and said "Yes."<br />
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Sometimes I have to go through the Hard to help him get through the Hard, to get him what he needs to find the light at the end of that long tunnel. He is on board, so I got through that hardest fifteen minutes for him.<br />
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From here, let's hope the meetings get easier.<br />
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com3tag:blogger.com,1999:blog-27817243.post-90318285593030115892016-08-13T00:32:00.002-04:002016-08-13T00:32:42.703-04:00A New Adventure: A New SchoolWe are a whole week into our new life at our new school. Joey seems much happier, though he does say that his other school was better, but this one is OK. He's in a small class, and they seem to be very interested in getting to understand him.<br />
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I already have had my first phone call. Of course, there was an incident. Joey hit his head, and went into his usual attempts to blame and hurt back, because he got hurt. He ended by hitting a staff member. This school uses different terminology than the other schools we are used to; I think the title of the person who is the head of the campus is campus director, not principal, but that same kind of idea. So, the principal called to let me know Joey was upset and perseverating on being suspended because he hit a staff member; but that he is NOT suspended, because they don't do that- he is just concerned that Joey is so upset, and they are documenting the issue because being suspended for one's disability is abuse.<br />
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When I heard he had hit a staff member, I naturally gasped, because that has meant suspension before. This person's response was, "oh, don't worry, we got this. It's no problem, that's what we do, we help these kids when they make mistakes and need new strategies. I'm just concerned that he is upset, and may need to talk when he gets home, so I want you to know what happened..." Joey just went into fight or flight, and they will work on that after he gets adjusted.<br />
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Did you pick up on the awesome there? Joey made a mistake, that was no problem. His concern was not that Joey hit someone; it was kind of, "well, if he didn't make these kinds of mistakes, he wouldn't be here, so nothing to worry about there, he's still adjusting..." No HOLY COW HOW CAN WE MAKE THIS STOP!!! No "Joey should know better! He's doing this on purpose!" No "ACK! MY STAFF!" Nope. This is "we get it. We understand, he's anxious and everything's new and he's had a hard summer. Just wanted you to know so you can give him some support, he's upset." They were happy for tips on how to help him, but the concern, the focus, the whole of the conversation was: let's help Joey through this. Let's make sure Joey is OK.<br />
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Let me repeat that.<br />
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"Let's make sure Joey is OK."<br />
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If this is the course we are setting, I think I like this school.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com2tag:blogger.com,1999:blog-27817243.post-36034765148256729772016-08-05T15:32:00.001-04:002016-08-05T15:32:18.616-04:00What we actually did<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrAwXSdvBH7Ml4FKB8llZ5K2FurdiiBSJ-MwmIvaqVax03FqFyA2LmXFsm_j4vThdSANcO9fH9k0O2ha6555jCssestYJ1b8IOUFxcccj9jDwmNyuKa2DA3ZYNFsTJTA6tdr_Q/s1600/001_momandboy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrAwXSdvBH7Ml4FKB8llZ5K2FurdiiBSJ-MwmIvaqVax03FqFyA2LmXFsm_j4vThdSANcO9fH9k0O2ha6555jCssestYJ1b8IOUFxcccj9jDwmNyuKa2DA3ZYNFsTJTA6tdr_Q/s320/001_momandboy.jpg" width="320" /></a>Lest we think the summer was empty, simply because I got whiny...<br />
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We closed out the school year by saying goodbye to our awesome school, Helping Hands Academy. Joey is moving on high school, and new adventures in learning and growing.<br />
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<tr><td class="tr-caption" style="text-align: center;">My graduate.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJECCp_RcjCXRVkOhWWFoSuKQSaTvp0oRb83PjtSpcOd6FoBSGF5tixeLfQnghMvI1EtRS9vkwCjj2pJtS4NUPkrQ5wRgO06Zj3wc8y9tkHroVGYMG6uEoHv-JWfQgXKc9QoLa/s1600/003_ready.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJECCp_RcjCXRVkOhWWFoSuKQSaTvp0oRb83PjtSpcOd6FoBSGF5tixeLfQnghMvI1EtRS9vkwCjj2pJtS4NUPkrQ5wRgO06Zj3wc8y9tkHroVGYMG6uEoHv-JWfQgXKc9QoLa/s320/003_ready.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdFc2DD63nQix1kn5vfsiXP3sBiJa68603nYc6UmE3tZv5EoNmAGxHbL3TacbKwp1Y9t5xCWzZUalyK0QYIVwuQ8n8L1YA6ug0rc3BOJo7SHvCDtnvI_Ouaml9RrsArsGUtclf/s1600/004_brothers.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdFc2DD63nQix1kn5vfsiXP3sBiJa68603nYc6UmE3tZv5EoNmAGxHbL3TacbKwp1Y9t5xCWzZUalyK0QYIVwuQ8n8L1YA6ug0rc3BOJo7SHvCDtnvI_Ouaml9RrsArsGUtclf/s320/004_brothers.jpg" width="320" /></a>We were ready to begin our summer adventures. Yes, I had big plans. Jamestowne. The mountains. Pennsylvania, maybe even New York- we didn't need to be back at 3 every day, so why not? We would just post to Facebook when we were headed out and if folks wanted to join us, great! But our first adventure, Jamestowne, got cancelled, and so the rest of that... well, fizzled out. </div>
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But we had video games, and popcorn, and we aren't big fans of the heat, anyway. </div>
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We had kitties to hug, too. Kitties are always good. Unless they sleep on you with their hot, fuzzy bodies and the A/C isn't keeping up. Then, well, at least they are cute. </div>
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We had a few pool days, trying to keep cool and have some water fun. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBOu8CEFlFpE3b2vWKv4tC7w0zlFBuxEbhditRDdhhh8TMGzlv_eeUw-kun_o-HUpnKzTJf3qUZvw1nNpFzPdEVax50_Gd8VycSggpvvQC1PqSTQW5NzXfBL2hrDztafu5IhQc/s1600/008_colonial+beach.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBOu8CEFlFpE3b2vWKv4tC7w0zlFBuxEbhditRDdhhh8TMGzlv_eeUw-kun_o-HUpnKzTJf3qUZvw1nNpFzPdEVax50_Gd8VycSggpvvQC1PqSTQW5NzXfBL2hrDztafu5IhQc/s320/008_colonial+beach.jpg" width="230" /></a></div>
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Colonial Beach is always fun, too, so we took a quick trip over to splash in the water and build some sand castles. We even met some other kids and played some water games. Then we had an awesome lunch at Ledos with pizza and chicken wings and cheese fries and everything!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDvX-oLb2vyVCtyBpvRlxV7199tOfzE4H8RGPLvChof5ow2_vqDitTmA3j9s2mIODCX1YFa2mwRckKUhWYxcGO-2eCxwo_meR8Dq9mU4p_iR7-8pOEeD3Zx7iUAmDWTwwKpo4C/s1600/009_lunch.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDvX-oLb2vyVCtyBpvRlxV7199tOfzE4H8RGPLvChof5ow2_vqDitTmA3j9s2mIODCX1YFa2mwRckKUhWYxcGO-2eCxwo_meR8Dq9mU4p_iR7-8pOEeD3Zx7iUAmDWTwwKpo4C/s320/009_lunch.jpg" width="320" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii7Uylkh7ErBMxrjztDdXkg-CCtPWktWuPLuI7u-GFAxcQpLz-Pq0YwcgxwZr8xyBHqFy8GWMIglUlI8mzcGhFrLvEPS7gHB-hwm_iXpF6io-Z3nP-fGkEyS18KJDxolChDOHB/s1600/010_pigeonforge+ahead.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii7Uylkh7ErBMxrjztDdXkg-CCtPWktWuPLuI7u-GFAxcQpLz-Pq0YwcgxwZr8xyBHqFy8GWMIglUlI8mzcGhFrLvEPS7gHB-hwm_iXpF6io-Z3nP-fGkEyS18KJDxolChDOHB/s320/010_pigeonforge+ahead.jpg" width="320" /></a>But the BIG adventure lay ahead: a quick trip to Pigeon Forge! We had planned to go all the way to Granny Ann's, but those plans didn't work out. We had so looked forward to the trip that we decided to go ahead and take the boys to the fun stuff and introduce them to Pigeon Forge, where we had originally planned to stop overnight.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiod5KBeJhyEC_BjGrqJN7zEr_aFUFlg7K0BAx8OGGRM8yBHILwZ8CsR4v1U4Nyp0s213uu7poz0zDkegop6m4bF31qEvF0wzdCVF1hfDQK99Mvm0d8XlZp8hThInuOnJh0PPwf/s1600/011_waiting+for+dinner.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiod5KBeJhyEC_BjGrqJN7zEr_aFUFlg7K0BAx8OGGRM8yBHILwZ8CsR4v1U4Nyp0s213uu7poz0zDkegop6m4bF31qEvF0wzdCVF1hfDQK99Mvm0d8XlZp8hThInuOnJh0PPwf/s320/011_waiting+for+dinner.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So handsome. </td></tr>
</tbody></table>
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We had an awesome dinner at the Mill, after a VERY long drive.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixHu1Hf86cnjfbA-xNLH7OgH_S9Vweeh4SVXQ3Qg08cWzcFzb8Q8SqNa8PkUy36gnLG3cmcB7MZ9C-GLL-5w-UAOE8aEDJaMHpLXJVMu8Gr2ezYsIxEIdz-jODjOmyDzljQl_o/s1600/012_xmasshop.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixHu1Hf86cnjfbA-xNLH7OgH_S9Vweeh4SVXQ3Qg08cWzcFzb8Q8SqNa8PkUy36gnLG3cmcB7MZ9C-GLL-5w-UAOE8aEDJaMHpLXJVMu8Gr2ezYsIxEIdz-jODjOmyDzljQl_o/s320/012_xmasshop.jpg" width="240" /></a><br />
Everybody even let me go play in the Christmas shop. Joey braved the shop with me, and we looked at all the sparklies.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHFm9L2SXn4Kzp2Miq7T9dZRNDs1OyaKT7Vo3VDdg94p_v3bB0Yc2GlQkPUCdohT3qcBflCyGvIHu_seKe-mrUGn6Ky3r7hyphenhyphenozVBsDM_Ku4REFu-JoIMq9JprKk7pBDB9LXc1P/s1600/013_wonderworks.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHFm9L2SXn4Kzp2Miq7T9dZRNDs1OyaKT7Vo3VDdg94p_v3bB0Yc2GlQkPUCdohT3qcBflCyGvIHu_seKe-mrUGn6Ky3r7hyphenhyphenozVBsDM_Ku4REFu-JoIMq9JprKk7pBDB9LXc1P/s320/013_wonderworks.jpg" width="240" /></a><br />
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I think the boys preferred the WonderWorks, though. Lots of fun stuff to see, and play with. They got to pretend to be astronauts, look at stuff about magic, and even got their photos taken as Obi-Wan Kenobi and Anakin Skywalker!<br />
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We got to play pacman together as a family! Joey won the most games, but Andy ate the most stuff.<br />
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Andy also loved blowing super big soap bubbles!<br />
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There was even a little game arcade at the end, so they got to win some prizes. They also got to try Dippin Dots. They approve.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZGmMBqJwgfpHd9cE4L7efCxzJbXvOLgDlWUplWdLZF1C7sQIzQyRAad2w_Pj62W0r9yvN7oQQzWFFC10LheXbIrReCrSnLrnf-yiPMygYVVgrfDiTnQPStGRGPdk-t3HYiWMX/s1600/015_firework.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZGmMBqJwgfpHd9cE4L7efCxzJbXvOLgDlWUplWdLZF1C7sQIzQyRAad2w_Pj62W0r9yvN7oQQzWFFC10LheXbIrReCrSnLrnf-yiPMygYVVgrfDiTnQPStGRGPdk-t3HYiWMX/s320/015_firework.jpg" width="320" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UbCHfJrhbLS1Lh5OrH4lj3LSoow-QQ0t7DzGrC74uZ9r4-kjlsIpOiD4vcEL303Spxj9XigMxIk-SMJLHljijFaLRDdNW-vTu1-ClxS6dfjSGA48XRetuIv9uaulMeV7NWX9/s1600/014_fourthfun.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UbCHfJrhbLS1Lh5OrH4lj3LSoow-QQ0t7DzGrC74uZ9r4-kjlsIpOiD4vcEL303Spxj9XigMxIk-SMJLHljijFaLRDdNW-vTu1-ClxS6dfjSGA48XRetuIv9uaulMeV7NWX9/s320/014_fourthfun.jpg" width="240" /></a><br />
We were back in time for the Fourth, so there were fireworks and fruit salad (and a bit rain).<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKThyphenhyphenGwOgl2ifMIUv8pjobHh62PWDASkjQvDVIwicOv-kHf2YFhmDmlXjAxLws3SRo34kc8uPcQ0aSkCkDMes-A1NsQkSuvsdm3aVsvlfVjjeB8mzXfgD5mfpYTE3rPzCPyqL2/s1600/016_andy_speed.jpg" imageanchor="1"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLAau09dahGVa01GwBBVTJhpPkFOratXpN3MUVZuvfYUELjVI-OhqcqgUQ6o4eYuhrBvb_iuv5KGRqXQABbQ_8272gMWBfwo4-1U-BwTFMOPBmQ3c2M4DG7PEG-7xtOWlX8C3Z/s1600/017_speed.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLAau09dahGVa01GwBBVTJhpPkFOratXpN3MUVZuvfYUELjVI-OhqcqgUQ6o4eYuhrBvb_iuv5KGRqXQABbQ_8272gMWBfwo4-1U-BwTFMOPBmQ3c2M4DG7PEG-7xtOWlX8C3Z/s320/017_speed.jpg" width="320" /></a><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKThyphenhyphenGwOgl2ifMIUv8pjobHh62PWDASkjQvDVIwicOv-kHf2YFhmDmlXjAxLws3SRo34kc8uPcQ0aSkCkDMes-A1NsQkSuvsdm3aVsvlfVjjeB8mzXfgD5mfpYTE3rPzCPyqL2/s320/016_andy_speed.jpg" width="320" /><br />
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We heard the new Speed exhibit was open at the Science Museum, so we braved the heat and headed out to see the fun. Joey got to play air hockey against a computer (the computer won), and there were races to run (are you faster than a bear? Um... no. No we aren't.) and even a wind machine that simulated the wind of a hurricane! People were really nice, even when we got a little tired and had to walk around the rest of the museum looking for some quiet space, but it was SO exciting.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAQkSmlTlfEE57D40xQ4YjhGymm0hfKgev1NcdSa7RvPqJJD3qi80Or4qlTQQ44DQ3DfjUCOwWdc_ANHyseCzozXcjEX0UH5_kB6UAZYFj-zeHVipglDk_Z7-h0DCe0Xx0lMsM/s1600/018_theater+toucan.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAQkSmlTlfEE57D40xQ4YjhGymm0hfKgev1NcdSa7RvPqJJD3qi80Or4qlTQQ44DQ3DfjUCOwWdc_ANHyseCzozXcjEX0UH5_kB6UAZYFj-zeHVipglDk_Z7-h0DCe0Xx0lMsM/s320/018_theater+toucan.jpg" width="320" /></a><br />
Then it was time for STEP-VA Theater Camp! Joey got the lead role this year, Milo the Monkey!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZLI_apB1k-2kyS3ih5hBhq-0oRx7U00KLtsww1lBd3crdqM9P5fxpifNkT8SDQ-HXg3sM5-VJNHt0PKjEZMQAV6tWEZGv7Y28aA6OW5XV24BeZeU5xkKkx2rKoXtXjmwuO6pr/s1600/019_owl+boy.jpg" imageanchor="1"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDU42HEcy1KFPhsjzjSgQYGFjVrrLpTD5hWFq1DJ0tpsbr4ZYlFIzM5KfwJte3JUwshyGJYe39cg55FzQjntVC1hrcSsPNfyU8-Pg0tjjt_Lr8DtMuj0InGLwbFKlXTUS9JdB7/s1600/020_milo+and+brother.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDU42HEcy1KFPhsjzjSgQYGFjVrrLpTD5hWFq1DJ0tpsbr4ZYlFIzM5KfwJte3JUwshyGJYe39cg55FzQjntVC1hrcSsPNfyU8-Pg0tjjt_Lr8DtMuj0InGLwbFKlXTUS9JdB7/s320/020_milo+and+brother.jpg" width="240" /></a><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZLI_apB1k-2kyS3ih5hBhq-0oRx7U00KLtsww1lBd3crdqM9P5fxpifNkT8SDQ-HXg3sM5-VJNHt0PKjEZMQAV6tWEZGv7Y28aA6OW5XV24BeZeU5xkKkx2rKoXtXjmwuO6pr/s320/019_owl+boy.jpg" width="240" /><br />
If you aren't familiar with Joey's favorite summer camp, they get kids together for a week and put on a big play. All the kids get parts. This one was specially written for the group. Joey loves to wear costumes and silly hats!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVMJeZ88cNk5ELcSDK2YiAs015Ff29jK40C3bY7NMXtLj7MJ0cxwvDILB3DuCdjdF9xI2ZIi5-9lYmi9bDG_CHiBjU14qHyXZMMmF1r1CmbgtFoDAuG3ULzimZDg43Ks4ixfcl/s1600/021_milo+and+brother.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVMJeZ88cNk5ELcSDK2YiAs015Ff29jK40C3bY7NMXtLj7MJ0cxwvDILB3DuCdjdF9xI2ZIi5-9lYmi9bDG_CHiBjU14qHyXZMMmF1r1CmbgtFoDAuG3ULzimZDg43Ks4ixfcl/s320/021_milo+and+brother.jpg" width="240" /></a><br />
Joey's character Milo won the Golden Banana for being helpful. Andy won the Best Brother award for just being awesome.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyVxKO6-Z_MJwpPCwGxaHV3PNsjpC7hKOHRadYQ0QHCIcPQCvigvjS_q6_TddI0iDNcQdhHPwzRA_AK85QYJ5sCUfo4Oxqp9vQO_L69_Cg1sDM51KQ58ZCYv2Y4qIx4_ZtvckT/s1600/022_joey+on+stage.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyVxKO6-Z_MJwpPCwGxaHV3PNsjpC7hKOHRadYQ0QHCIcPQCvigvjS_q6_TddI0iDNcQdhHPwzRA_AK85QYJ5sCUfo4Oxqp9vQO_L69_Cg1sDM51KQ58ZCYv2Y4qIx4_ZtvckT/s320/022_joey+on+stage.jpg" width="240" /></a><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPzZHGdi0VkLKrFGu4an-FywrUMhLREZzvXrgZbiCgPxCU7urdHU0QDsl9honxVN2vRgEJJHxEIXOZXr1x2PVa_s72Hz2r_C3mVqRX5C8dmPgy9NyAvmM4l3MLTEjA_hCt7NTL/s1600/022c_monkey.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPzZHGdi0VkLKrFGu4an-FywrUMhLREZzvXrgZbiCgPxCU7urdHU0QDsl9honxVN2vRgEJJHxEIXOZXr1x2PVa_s72Hz2r_C3mVqRX5C8dmPgy9NyAvmM4l3MLTEjA_hCt7NTL/s320/022c_monkey.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Milo Monkey!<br /></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuqQkT-mzhY1USp0sd_SKEzXI9_e2RRm_ALnUyqRfkh9rxv7WF8Up5QnEu1Mr9iUpgSNBFcnZGo70qWsuS9yXRNuqzuJMn9ezIgi6hMfiOVvct92i7GzUv7c8L4Yt3GjrOjJPZ/s1600/023_ledos.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuqQkT-mzhY1USp0sd_SKEzXI9_e2RRm_ALnUyqRfkh9rxv7WF8Up5QnEu1Mr9iUpgSNBFcnZGo70qWsuS9yXRNuqzuJMn9ezIgi6hMfiOVvct92i7GzUv7c8L4Yt3GjrOjJPZ/s320/023_ledos.jpg" width="320" /></a>We celebrated the success with another Ledo's lunch, and Dad even got to join us! The boys love it when Dad can come!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BnRZS0kaseD6JB4ambdc963wSVA-z5RBPPZGElXBahD70I1qzFTuy7hMTRBA9B4uDw24u2nPJuHDi20zQmRaHTZkNeczBbPFL5HgjPRKl_UIgpfj4tojnJJ9Km9euIcOk615/s1600/024_ledos_gastly.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BnRZS0kaseD6JB4ambdc963wSVA-z5RBPPZGElXBahD70I1qzFTuy7hMTRBA9B4uDw24u2nPJuHDi20zQmRaHTZkNeczBbPFL5HgjPRKl_UIgpfj4tojnJJ9Km9euIcOk615/s320/024_ledos_gastly.jpg" width="180" /></a><br />
Another big adventure for the summer: Pokemon Go! Yep, Andy and I play. We are on Team Instinct. Gotta catch 'em all!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE0zkaGJMmhbjtEKbfC4ZTZR5YGGpaIKog6umIgVAz_GHOJPqo9PRwe-6AUtFeOkliCvOHt4Nm-fQFRDHwhvj8fvo5GdXlGXat7NJURH8gLqoiPJ1F1ElpHiX1VE3llAyKsKcP/s1600/025_japanese+dinner.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE0zkaGJMmhbjtEKbfC4ZTZR5YGGpaIKog6umIgVAz_GHOJPqo9PRwe-6AUtFeOkliCvOHt4Nm-fQFRDHwhvj8fvo5GdXlGXat7NJURH8gLqoiPJ1F1ElpHiX1VE3llAyKsKcP/s320/025_japanese+dinner.jpg" width="320" /></a><br />
We had so much fun with Dad, we insisted he also come to our favorite Japanese place with us for a dinner. Joey still loves the "magic show."<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyOpMUFfFh2OlLbsyWWubtEOmeZvA-KhOapcpw5NNUkYsXRGNGfrmip8rYG2W9YgCAtmg3VymnXddBk4pJS7mgx2d9-1Ac5LUiTHQpWsnEAeskrEeLQMw0ufvlu_AYV2ssdNpN/s1600/027_handsome.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyOpMUFfFh2OlLbsyWWubtEOmeZvA-KhOapcpw5NNUkYsXRGNGfrmip8rYG2W9YgCAtmg3VymnXddBk4pJS7mgx2d9-1Ac5LUiTHQpWsnEAeskrEeLQMw0ufvlu_AYV2ssdNpN/s320/027_handsome.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQmJv5VhyphenhyphenY20TDmUKfep8bqdURFEgOlIQgjs5bxUE67SBjMdRBThtsJPGAnXMCZ8DEF4RjOoqWuzjjb2VMyYKjdYnPbnKTRkCLLhDYy6M9BvyFUNtq1SnvU3j1EiLxu37OivX/s1600/026_car.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQmJv5VhyphenhyphenY20TDmUKfep8bqdURFEgOlIQgjs5bxUE67SBjMdRBThtsJPGAnXMCZ8DEF4RjOoqWuzjjb2VMyYKjdYnPbnKTRkCLLhDYy6M9BvyFUNtq1SnvU3j1EiLxu37OivX/s320/026_car.jpg" width="320" /></a><br />
But to be honest, much of our summer still looked like this. Well, not in this super-nice car. We rented this because all of our cars were in the shop for about a week. But in cars. We liked to visit Miller's Farm, and Grandma, and Cici's Pizza.<br />
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Joey also found a sport coat he liked, because he loves to look dapper and snazzy. A great Goodwill buy- another of our favorite places to hang out (well, we also like ReTail, because... kitties!) He picked out the tie to go with the jacket.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW_hHZs-LNSM4Q7RtMmOUJgn-qBH5-_2_1uLDdeyy4JlJGF17r16t2ylvyElTqmKc_pPBHoptY22S31ZmNv5pkawGIEP36OGXipjRcrGVssLmfboP0fusE38-1tWl3X9grQi19/s1600/028_porch.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW_hHZs-LNSM4Q7RtMmOUJgn-qBH5-_2_1uLDdeyy4JlJGF17r16t2ylvyElTqmKc_pPBHoptY22S31ZmNv5pkawGIEP36OGXipjRcrGVssLmfboP0fusE38-1tWl3X9grQi19/s320/028_porch.jpg" width="320" /></a><br />
The porch is another favorite spot. SuperGoose still stands guard against impending llamas. Joey bought some large letters and painted them, they are his favorite summer toys.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiduiT5IUlbHAX09o8IHAs92EyliKSwkSYBUauhqiIaHnTSFQpcDd5q4ja56VCivA6raL4tD4VTVm8uGJ43EoIua152ny2Kct1p0Uf-DP5-cCEd-wwrfVij5riR55N74ISVJvTg/s1600/030_braehead_icey.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiduiT5IUlbHAX09o8IHAs92EyliKSwkSYBUauhqiIaHnTSFQpcDd5q4ja56VCivA6raL4tD4VTVm8uGJ43EoIua152ny2Kct1p0Uf-DP5-cCEd-wwrfVij5riR55N74ISVJvTg/s320/030_braehead_icey.jpg" width="240" /></a><br />
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We discovered a lot of the local farms also have ice cream! We like Miller's Farm's ice cream, and Braehead Farm's ice cream, and Yoder's ice cream...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxozbSvpqHzgP9N4gazOIm6tRfSjazD_7vicEDUb0gTK8kNQY9mDC7R4SdGHuYln_zgE5i7G3DON02XuAnWW8KqOY0raQrHFned22Qn6h23VhT2DwJtfAl4B2U5N8tyxgJKST/s1600/032_yoders.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxozbSvpqHzgP9N4gazOIm6tRfSjazD_7vicEDUb0gTK8kNQY9mDC7R4SdGHuYln_zgE5i7G3DON02XuAnWW8KqOY0raQrHFned22Qn6h23VhT2DwJtfAl4B2U5N8tyxgJKST/s320/032_yoders.jpg" width="240" /></a><br />
Yep, stopped at Yoders on the way back from seeing the doctor in Charlottesville. Because ice cream! And goats! And yummy sandwiches!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEISvNeNrhOf0cGGLa_8LBLTuoKA5zyDVw__65ZRUKberF4hXwRi9DgpOcPTILNCEJjjMPjinEvkTePr0EHdnNahgfgScjV8B073_ki5zaGwXVJY6JkETsUB75z3NZcR7JruP/s1600/033_baconbits.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEISvNeNrhOf0cGGLa_8LBLTuoKA5zyDVw__65ZRUKberF4hXwRi9DgpOcPTILNCEJjjMPjinEvkTePr0EHdnNahgfgScjV8B073_ki5zaGwXVJY6JkETsUB75z3NZcR7JruP/s320/033_baconbits.jpg" width="320" /></a><br />
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Our summer also had some nice visits. We got to guinea pig-sit for a friend. This is Bacon Bits, or was we liked to call him all week, "Mister GUINEA PIG!!!"<br />
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Best of all, we saw some of our school friends. Joey was so excited for his friend N to come see him.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1_TE0cvXCKEmgXH6PQxpku01v_6PuSyv-P56zcY7Ja3CvoIkYskjKnh_X4Gzddq47RYXFWAUyLpNmNr642EVMWJiRQ2-Qs77iFx18zGe-Nzlo61iJOZDe3gMGgln0Q4dbCvxY/s1600/031_visit.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1_TE0cvXCKEmgXH6PQxpku01v_6PuSyv-P56zcY7Ja3CvoIkYskjKnh_X4Gzddq47RYXFWAUyLpNmNr642EVMWJiRQ2-Qs77iFx18zGe-Nzlo61iJOZDe3gMGgln0Q4dbCvxY/s320/031_visit.jpg" width="240" /></a><br />
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With all the excitement, we have spent most of August being quiet. Trying to stay out of the heat. Getting ready for school to start on Monday. So none of the wild and woolly adventures I had dreamed of, but summer nonetheless. Pizza, popcorn, RoBloks, Minecraft, and kitties. Can't really complain, now, can we?<br />
<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com1tag:blogger.com,1999:blog-27817243.post-46889318226136892422016-08-05T12:13:00.002-04:002016-08-05T12:14:45.349-04:00Just When You Thought It Would Be Forever<div class="" data-block="true" data-editor="bs16d" data-offset-key="97m2m-0-0" style="background-color: white; color: #1d2129; font-family: "San Francisco", -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; letter-spacing: -0.24px; line-height: 18px; white-space: pre-wrap;">
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<span style="font-family: inherit; letter-spacing: -0.24px;">.. And then suddenly, just like that, it was over. All the plans you had, all the dreams and expectations of fun and joy, never happened. All the experiences you had planned to share, all the trips and activities, all for naught. The craft kits lay scattered in the kitchen, where they never even gave them a glance, unmade and unwanted and unloved. Perhaps they are too old for them now. All the people you wanted to visit, but you got to see none of them. You had plans and back-up plans, but nothing fit the reality of your life. Even with the delays and extensions and no need to be back by three, none of it happened.</span><span style="font-family: inherit; letter-spacing: -0.24px;"> </span><br />
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<span class="s1">Summer is over. Joey goes back to school on Monday.</span></div>
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Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-15249287241577540422016-05-20T03:38:00.003-04:002016-05-20T03:38:39.129-04:00Between Waking and SleepingSitting in the glow, of the laptop, I spent a moment listening. The fan in the guest room needs some WD-40. The cat is snoring. Allan's sleep machine is in a steady breath rhythm.<br />
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Joey is having some trouble. Congestion. Sometimes he wakes up with a cough, and I listen. I have him set up in the recliner, so he'll be sitting up- easier to breathe. He swallows, semi-chokes on the congestion in his sinuses in his sleep. I listen. A little cough, but no bark. The breathing is thick, but consistent. I'd go to sleep, but I listen instead.<br />
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We went to see the doctor earlier. He was scratched by the cat, and it got infected despite our cream regimen. The doctor suspects cat scratch fever, but we'd have to do a test for confirmation. The treatment would be the same, so no point. He has his antibiotic. Since the scratch is on his face, I worry- the nearest lymph nodes are the neck ones, I think. I listen.<br />
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A little choke, but he recovers. I doubt he'll be going to school tomorrow. He can't be getting much decent sleep. I don't know if the congestion is part of the infection, or just an opportunistic something else. It's almost 4 am, and I have things to do tomorrow. I need some sleep. Instead, I listen.<br />
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Caught between the quiet waking and the quiet of sleeping, I listen to my baby, making sure he is safe. It's what moms do, isn't it?Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-91879532416657262822016-05-10T00:03:00.001-04:002016-05-10T00:03:27.199-04:00Happy Blogiversary to me... Oops. Missed it by three minutes.<br />
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Well, that was fun. Carry on.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-68541325187446858842016-05-01T13:08:00.002-04:002016-05-01T13:08:48.151-04:00Where Awareness and Acceptance End- Inclusion IllusionI was reading an article today, and nerves sang. The article was "<a href="https://www.blogger.com/blogger.g?blogID=27817243#editor/target=post;postID=6854132518744685884" target="_blank">Let's Be Blunt: The Illusion of Inclusion.</a>" The message was one we face: kids with special needs not only don't count, but are openly despised by the general population.<br />
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The truth of inclusion is that it doesn't really exist- and hence it didn't work for us. Joey is in a special school- and we wait to find out if he is going to be wait listed for the only high school program that can accommodate him next year that we know of (and what happens if he is wait-listed? Where will he go? How will he get an education, and access his RIGHTS?)<br />
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Even the "inclusion classroom"- which is really a special-needs classroom where kids just require less support or can be pulled out of the classroom for services they need- didn't work for Andy, and we had to pull him from school altogether. The attitude of "you are taking resources from NORMAL kids!" is so prevalent and ingrained, we don't do any real inclusion. My kid is seen as a project, a nuisance, a threat, a drain, an "inspiration", an idiot, a distraction... instead of as a member of the community, a child, a human being.<br />
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That ingraining comes out in so many ways, from so many directions. People think nothing of insulting your kid casually, and then getting mad at you when you try to make it stop. They tell you to leave spaces because they think you have no right to be there, to exist as you are. They judge you, often openly and loudly, in public places. That people think this is OK is just insane. Cruel. Heartless.<br />
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I will never forget sitting in the rows of parents at the spelling bee. Third grade. Joey introduced himself with his typical flamboyance and joy. They laughed; not with him, but clearly and explicitly <i>at</i> him. The attitude was clear, and voiced in plain English: <i>oh how cute, they let a retarded kid up there. Isn't that sweet. Poor kid, making a fool of himself, why do they do that?</i> The assumption of his intelligence- that he lacked it and didn't really deserve to be on that stage- so clear. They didn't notice me there, saying nothing. I'm a big lady, but this isn't unusual. I am often the Invisible Person. I assume these other people knew each other, and they certainly did not know who <i>I </i>was. I assume they weren't <i>deliberately</i> cruel and mean.<br />
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By the end of the bee, they were out of their chairs, cheering for him. If the last round of a spelling bee worked like all the other rounds, he would have won- but you have to spell an extra word. And when he missed it, he got flustered and decided to bow out. He deliberately mis-spelled the next word, when the other two contestants were brought back, even though they had mis-spelled their words and he had spelled his correctly in the next-to-last round. Changing the rules confused him, made him frustrated and angry, and he was done. He bowed out. But he had shown those idiots in the crowd that their assumptions about the special needs kid not deserving to be on that stage were totally wrong.<br />
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They knew he had won that spelling bee.<br />
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I often wonder if they took the lesson to heart, or if our society is so ingrained with discrimination against those with differences, those who require different things from society, that they just went back to those comfortable old assumptions. The ones supported by <a href="http://www.ascd.org/publications/educational-leadership/feb07/vol64/num05/Confronting-Ableism.aspx" target="_blank">society</a>, by <a href="http://disability-studies.leeds.ac.uk/files/library/Barnes-Media.pdf" target="_blank">media</a>, by <a href="https://www.youtube.com/watch?v=y8arl3izldo" target="_blank">comedians</a>, by <a href="https://www.publicintegrity.org/2015/09/03/17942/kayleb-returned-court-schools-alter-discipline-policies" target="_blank">schools</a>, by <a href="https://www.dol.gov/whd/regs/compliance/whdfs39.htm" target="_blank">legislators</a>, <a href="http://abilitychicagoinfo.blogspot.com/2014/10/failure-to-accommodate-employee-with.html" target="_blank">by</a> <a href="http://wkrn.com/2015/11/09/homeless-advocates-seek-justice-for-man-kicked-out-of-murfreesboro-aldi/" target="_blank">businesses</a>, by <a href="http://www.theguardian.com/us-news/video/2015/nov/26/donald-trump-appears-to-mock-disabled-reporter-video" target="_blank">politicians</a>, even by the <a href="http://badcripple.blogspot.com/2012/01/organ-transplants-and-disability.html" target="_blank">medical establishment</a>(and these links are just examples or information I could dig up on the fly). Did they imagine him as an inspiration porn meme, or did they actually go out and change their attitude? Will they now really include him, and people like him, or did we just make it worse- spread the stigma by counter-example?<br />
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Joey is a human being. Andy is a human being. Guess what? So am I. So are you. Let's all start acting like it. We are all in this together, and none of us make it out alive. Treat others as you would wish to be treated, no exceptions. Why is this acceptance thing so hard for everybody? Would you want to be the kid that gets laughed at, left out, segregated, and left behind to rot? Can't we even be inclusive of ourselves?<br />
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com1tag:blogger.com,1999:blog-27817243.post-10129817269888206242016-04-15T23:17:00.002-04:002016-04-15T23:17:59.126-04:00The Good with the BadMost days with Joey are good days. He's happy. He feels safe at school. He likes to learn new things, and show off what he knows and can do (just ask him a math question...) He's discovered imagination and Star Wars and healthy eating. Let him script and do his thing, and he will skip through the day being Awesome and trying to bring you along in the Awesome. If feeling slightly off, he may script more, or turn to his favorite video game (which currently involves making cupcakes).<br />
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Then there are the bad days. Usually he's not feeling well- it can be hard to know when Joey is sick, or tired, or just grumpy, because he's working so hard to be happy and to please everybody and be perfect. When this fails in his own eyes, the spiral begins. He thought he was playing, and you mistook his action for something aggressive or inappropriate. He accidentally knocks something over or spills his water. He stubs a toe. He gets something wrong on an assignment. These little things become a straw upon the camel's back, and once it breaks, we have a Bad Day.<br />
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Joey has a lot of difficulty recovering from a Bad Day. He can't just let it go, calm down, or start over. He can't shrug it off and turn it around on his own. He needs help. Sometimes he just needs a nudge in the right direction in the right way. Sometimes he needs a lot of support and patience. Sadly, there is little knowing which it will be right this minute in the Bad Day, and if the spiral continues, we are headed for meltdown. It builds. The steam doesn't really release; those early signs of spiral are just more pressure. He knows this isn't going well. He doesn't know how to change it. He can't stop the spiral, either. The frustration of continuing to "do it wrong" bursts out as self-deprecation. Too often, this has turned out badly, very, very badly, and so he has now cut to the chase and started in himself, knowing from experience that this is a Bad Day, and there is nothing he can do about it now.<br />
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In the regular school, Bad Day meant write-ups, suspensions, punishments. Even if he was allowed to recover, after about 20 minutes- when he was outwardly looking better- he would be sent back into the frying pan; no one understood he needed much more time, that this was more like a seismic affair, complete with growing quakes and aftershocks. The blow-up is the center of the event, not the beginning- or the end.<br />
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Joey has internalized this criminalization of being overwhelmed, of being unable to recover without help, of spiraling without brakes. The frustration of it makes him more aggressive, in trying to get out the fear, the frustration, the explosive energy of the anxiety of I Did Something Wrong and Now They Will Hate Me. That aggression can turn into flight. Without flight, it becomes fight. Will be bite his arm? throw something? posture aggressively towards another person? There is no way to know how that fight will play out.<br />
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On those Good Days... the majority of days, when things are quiet, and Joey is humming along doing his thing and being himself and starting to store up those little irritations and straws up on his back... those days, he can do anything. He could move mountains and conquer the world. A flash of that grin and a high five and he melts all hearts.<br />
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It's on the Bad Days that he needs the support, the help, the extra time and patience. It is on these days that often Joey, and many like him, get exactly the opposite. Instead of understanding that this is just part of Joey (everybody has bad days, after all- you don't stop being their friend just because they are having a bad day, right?), he's treated as a broken thing. A you-aren't-Joey-today-what's-the-matter-with-you monster, instead of a kid having a bad day. If you were having a bad day, wouldn't you want your friends to cheer you up, maybe pop in your favorite movie, bring you some flowers or something? You certainly wouldn't want them to scream at you, tell you to leave, turn you away, or punish you. If that became the regular response to you having a bad day, you might start being self-deprecating, too. That's what happens to people who are emotionally abused, day in, day out, even by people who have no clue what they are doing or that they are doing it.<br />
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Recovering from this kind of grueling abuse is a long road, even when the exposure wasn't long at all- it doesn't take much to grind a child down. Several years of school is not a short time, and we are just beginning our road. I am grateful for his school, where people are understanding Joey and trying their best to help him, instead of just punishing him for having Bad Days- even a spate of them. This understanding and effort is the first step in teaching Joey how to cope with Bad Days, how to build a toolkit to respond to (and even prevent) getting overwhelmed, and giving him some brakes for the spiral. Without this first step, there is no way for him to understand, because he reads loud and clear that he is, as a person, Bad, since you are refusing to help him and are punishing him for being himself, and trying his best. When a child does their very best, and it isn't enough, you don't slap them.<br />
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You help them.<br />
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That is how they learn to be independent and confident in their growing skills.<br />
<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-75065617873522637142016-04-10T20:25:00.002-04:002016-04-10T20:25:32.426-04:00Birthday Boy<div class="separator" style="clear: both; text-align: left;">
Fourteen. Really. </div>
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Yes, I got him a bike horn. It's like I'm new here. </div>
<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0tag:blogger.com,1999:blog-27817243.post-59729600525155239352016-04-10T02:53:00.000-04:002016-04-10T02:53:08.047-04:00Happy Birthday, Joey!<div class="separator" style="clear: both; text-align: center;">
He's fourteen now, people. </div>
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Where did the time go? </div>
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<br />Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com1tag:blogger.com,1999:blog-27817243.post-53334614358079561402016-04-09T01:45:00.002-04:002016-04-09T01:53:01.759-04:00What day is it? Where am I? What's Going On? Oh, right, Spring. It's here. Kind of. And Joey's birthday is upon us- he is so excited, he couldn't focus in school at all or get anything done. Besides- spring! Time to go ALL OUT NUTSO-BONKO!!!<br />
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Sensory processing issues are part and parcel with autism. Since autism is neurological and pervasive, Joey's whole experience is affected, and his nervous system interprets and deals with sensory data as differently as all the other data he gets. We spend a lot of time figuring out what his sensory needs are, how he is seeing the world around him, and what strategies and interventions will help him cope and function in the world.<br />
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One of the reasons we spend so much time on this is because it isn't constant. Every spring, everything shifts and changes. Things that bother him now will suddenly be fine. Situations he could tolerate at Christmas now become overwhelming and impossible. He does this again in the fall. The season change and shift, the transition between extremes of weather and temperature, throw him into a tizzy, and his body shifts and changes with it.<br />
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This annoys people who don't know much about sensory integration and why it can be a problem. They treat it like a bee allergy, where once you react, you always react. This month he may be sound-sensitive; in six months, that may shift around and have him not be able to process sound (resulting in not being able to understand people talking to him) or to an over-tolerance (so that he will actually seek loud sounds, and his own voice volume goes up). Certain textures will swing wildly from tolerable to intolerable to craved. There is no way to know what will shift, what it will shift to; old problems re-emerge and newer issues fade or dramatically worsen.<br />
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He can't tell, either. If you thing it is confusing and frustrating for us, it is tenfold for him. Things he enjoyed doing are now too noisy, too bright, nor not enough. This means his own strategies no longer work, and he has to go back to square one, just as we do. He has to re-think it all out all over again, while being uncomfortable and even scared. Not fun.<br />
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The excitement of upcoming birthday gets tossed into the spring mix, along with the looming summer schedule changes. Anxiety everywhere! I wish there was a way to predict which way the sensitivities will swing, so we can prepare, so we can help him prepare, so we can get out the right tools for coping with the changes.<br />
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Right now, I'm just doing what I can- making sure my sensory bag is stocked, checking up on the paint and playdough supplies, getting ready to get the back yard in order so he has space to run and jump and think. Oh, and shhhhh... birthday surprise... buying him a new bike...Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com2tag:blogger.com,1999:blog-27817243.post-61423656424492050662016-04-06T23:00:00.001-04:002016-04-06T23:00:08.317-04:00Autism Month, Day 6Isolation.<br />
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It creeps up on you and seeps into your fiber, as you rush about to therapies, meetings, schools, jobs. You hardly have time for the phone calls you need to make for doctors, appointments, counselors, more therapists, more schools, more meetings, there is little time for calling a friend.<br />
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When Joey was little, I worried about meltdowns, overload, and unexpected behavior. We went out, anyway, because I could always bring my Mary Poppins unending bag with us, prepare, and hey, I could always pick him up and take him to the car. I'll never forget the first time we used our handicap parking placard- we had been nervous about getting it- and discovered that it made our lives safer and easier. We could at least expose him to a variety of places and activities, even if we had to leave suddenly and quickly.<br />
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He's bigger now. He lasts longer, but when he's done, he's done. He's too big to pick up and save. If he melts down on the boardwalk, I'm in trouble, he's in trouble. When they are little, people shrug and smile and frown and whatever. When they are big, they can be perceived as a threat. I have to pick up on the warning signs before he gets to the screaming stage, or it can be dangerous for everyone. That means I have to pay even more attention than before. <i>I can't make a mistake.</i><br />
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This means less going out- it takes a lot more planning to go, a lot more energy. Fewer people are tolerant, and far fewer accepting and helpful. Less going out means seeing less people. Going out with fewer friends. Less and less playdates. And when you do go out, less conversation. When you talk less, fewer people want to hang out with you and your family.<br />
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With special needs parenting, you find yourself more often in crisis mode. All those phone calls aren't being made for fun, you know. Hitting puberty means more danger of depression, anxiety, frustration, angst. Add the anxiety, depression, and frustration of autism on top of that, and you have emotional nitro glycerin. You work to keep your kid safe, engaged, moving forward; this can take an enormous amount of energy with a <i>non</i>-disabled teenager. As we run about trying to find a new school for Joey, the anxiety for his future mounts, adding to the stew.<br />
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When in crisis mode, very often the checking on friends falls to the wayside. You want to be a good friend, and if they fall into crisis, you would totally be there. But right now, unless they are in crisis, your energy has to be focused on your own page-turning chapter. You might have a time for a quick check- you thank the stars for Facebook- but unless they can say "hi!" in about three minutes, you have to make do with the info you have. Yes, I've heard that you make time for what's important to you, but in crisis mode, your kid is what is important to you. His future. His life.<br />
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You might think you know where this is going, but I'm going to turn right here at Albuquerque, and give a shout out to my friend, Sue.<br />
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You see, here in the middle of crisis mode isolation, I get reminded that you make time for what's important, and that's a reminder that my phone isn't exactly ringing off the hook with people looking for me, or wondering where I am, or what the heck is going on. I put up Facebook posts, and assume everybody else must be in crisis mode, too, and that will have to do. Quite a few people are- when you are in the special needs community, you know a lot more families stuck in that same crisis mode you are.<br />
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But there is only one who has actually called, and regularly pokes me with a "you OK over there, woman?"<br />
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That would be Sue.<br />
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We were roommates in college. I have no clue how she survived that. I am the WORST ROOMMATE EVER, especially when you are clean, organized, get-it-done woman like Sue. Even more astonishing, she has stuck to me through thick, thin, stormy weather, and all the colors of the rainbow. Holy Hannah, the effort that woman has put into staying friends with me! She calls. She shows up in DC and makes sure I know, so I can get together and see her. Even in the face of months of unreturned poking and prodding and calling and everything, she sticks with me. If I called her tonight and said, help! You know what?<br />
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She'd help.<br />
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A shout out to good friends, through years and ages, and hoping she knows if she finds herself in crisis mode, that's why they invented cell phones... so you can call at any time, day or night. And they invented planes, too, in case I need to get there. I know she'd do the same for me... because she does.<br />
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Thank you, Sue.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com1tag:blogger.com,1999:blog-27817243.post-53257443518472150212016-04-04T23:55:00.004-04:002016-04-04T23:55:55.979-04:00Autism Month, Day 4The alarm goes off. My mind swims back to consciousness, prodded by the chimes of my cellphone and the soft nudge of a cat. She wants breakfast. I want more sleep. I've been having issues with that, trying to sleep and being awakened, or simply worrying myself for hours. I need to start a new story, so I can make up some characters and let my brain whirr on that instead of the fifty things I need to try to do tomorrow; I'd get to sleep faster. Allan has already left for work, so the bathroom is free. I stumble in that direction.<br />
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Sometimes Joey is already up, playing a game or chasing cats. Sometimes he comes in and slips into Allan's spot, cuddling (and sometimes also playing a game), getting in some mom snuggles. Today, he is rolled up like a boy burrito in his blankets in his own bed. Andy is up, on his iPad, petting a cat.<br />
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"Rise and shine, Buddy!" I call as I head down the stairs. There is lunch to be made, cats to feed, pills to prep, breakfast to put together. Sometimes I let Joey make his own lunch, but it makes him grumpy. With the late sleep, another possible red flag, I start on it myself. A sandwich, an apple, some crackers he may or may not eat; sometimes they are fine, sometimes he puts them on his "junk food" list in his head, and won't touch them. I think of the wonderful, creative lunches I've seen online. I bought some containers to make some, but I've never done it.<br />
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Joey appears in his favorite shirt, and I hand him pills and breakfast. We keep trying to find something to reel in the anxiety, but this combo is the only thing that both takes the edge off while not having him go nuts or feel weird. I am not looking forward to the day his body compensates and makes it useless. I push aside the pang of futility and go through his notebook, looking for forms I need to sign and return.<br />
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"STOP TAKING MY HAND!" Joey yells, and I jump. What?<br />
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He's staring at me, and my brain is racing. What is it? I'm not near him. His hands are empty.<br />
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"STOP TAKING MY HAND!" he yells louder, and then laughs. "LET GO OF ME!" He picks up a stick- a walking-stick or cane size, not his usual writing size- and heads to the back yard. I finish the lunch, put the bag together with a supply of chewing gum, and my next alarm goes off- time to remind Joey to put on shoes and make sure he is ready for the car to come. He tromps back in just as I reach my phone to turn it off.<br />
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"THE GARBAGE WILL DO!" he shouts, grabbing his backpack, and giggling mightily.<br />
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Oh, Right. Star Wars. It's going to be a yell-the-script kind of day.<br />
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As he slips into the back seat and buckles in, I silently wish the school folks good luck. It's going to be loud. Very loud.<br />
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May the Force be with him.Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com1tag:blogger.com,1999:blog-27817243.post-44145028990118784302016-04-03T21:32:00.001-04:002016-04-03T21:32:26.246-04:00On the Third Day Of April<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkDsU8TQ9RpH9MwfTRY_paD1vsdWEguroIX9dTbJkSNlP-QYh-risNDUs0f9mNUMaUtqIKq3txkdkTX_c3MDH3_K6bcvEknydK5x9wHWbNQGNiVJ-QfHnaDdLJnXHvEdYgYuMh/s1600/IMG_3680.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkDsU8TQ9RpH9MwfTRY_paD1vsdWEguroIX9dTbJkSNlP-QYh-risNDUs0f9mNUMaUtqIKq3txkdkTX_c3MDH3_K6bcvEknydK5x9wHWbNQGNiVJ-QfHnaDdLJnXHvEdYgYuMh/s320/IMG_3680.JPG" width="240" /></a>Joey's baseball season has begun! Joey plays for the Challenger's League, through Little League. He loves to play, though the spring season is often hard for us by the end- the heat cranks up, and Joey doesn't do heat. Perfectionism is a problem, too- although everybody gets to hit, run, and score, he know the real rules of baseball. He gets upset when he swings and misses. As the season progresses, so will he; but the first game can be tough. It's a transition, like any other.<br />
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He's been gearing up this year, though. Around Christmas, all the lessons of the nutritionist sunk in and clicked, and he's been working on his weight and strength, eating better and going out to play more. He's lost nearly 30 pounds- which is even more amazing, as he has gained about 3 inches in height at the same time. If I could get him to practice, he'd knock the leather off the ball.<br />
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So it is time to pull out our baseball scripts, find a good place to keep our uniform, and get ready for some fun Saturday games. We are Marlins again this year, so it should be awesome!Joeymomhttp://www.blogger.com/profile/08254601805621175842noreply@blogger.com0