tag:blogger.com,1999:blog-26445383096730505722024-03-14T01:39:15.086-04:00Autism with a side of fries Living the life with a son on the spectrum who proves that a side of fries makes anything better. Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.comBlogger309125tag:blogger.com,1999:blog-2644538309673050572.post-61274015846215519232021-06-27T08:42:00.000-04:002021-06-27T08:42:42.001-04:00Sunday Funday <p> I think it's safe to say we all came up with new coping skills in order to maintain our sanity during lockdown. Kiddo is no exception. As the world has started to reopen, I have seen there are a lot of skills that he previous had that have gotten rusty. Like eating out. Oy vey, he went from a kid that would gladly eat out for every meal of the day to one that is like "We can't get this to go so I can eat fries in my pajama bottoms like the good Lord intended?" We're working on it though because my husband and myself very much like NOT COOKING and we are slowly seeing progress with that again. </p><p>But man we have hit a wall hard with Sundays. All the sudden we have seen Kiddo become extremely fixated on Sundays. I have always joked that you better have a plan for the weekends or he'll make one for you and it will most certainly be expensive. While that still stands for Saturday, Sunday has become a routine around the house that is NOT to be messed with. </p><p>And as routines go, it's not really disruptive or outrageous. It centers around that the mail isn't delivered on Sundays. Which as you can imagine is a bit of an odd thing to fixate on when you are a kid that doesn't pay bills. So why the focus on it? Well, maybe it's the fact that it comes all the other days of the week. Even during the peek of COVID, he could count on the truck rolling down the street. We also made it one of his jobs to go out and get it, which again, lockdown. Other than walking the dogs, it was one of his few outings he could count on. </p><p>In turn he started to hyper fixate on what WOULD happen instead. What he could control because despite his campaigning, I was not able to get a part of the Federal Government to make the mail come on a Sunday. (I know, I know. It's like I didn't try.) </p><p>So it became about certain CD's that he would listen to at certain times throughout the day. (Yes, CD's. Yes, we have an Alexa and all the streaming stuff you could want. He still loves CD's. #BecauseAutism) Followed by certain movies he "script watches". What's that you say? Okay, have you ever been to a Rocky Horror Picture Show at midnight? It's kind of like that but with less garter belts and slices of toast flying through the air. (If you have never been to a midnight showing of Rocky, I urge you to correct that situation.) He will utter every line in the flick and reenact every scene right in front of the TV. It's actually quite impressive and highly entertaining. Then there are certain books to read, games to play, etc...</p><p>In a lot of ways, this is good. He keeps himself busy. It clearly soothes him. It's a day off from school and therapies. He should spend it doing the things that he likes. </p><p>But in other ways, it's hard because he now refuses to leave the house on a Sunday and like it or not, sometimes we have stuff to do. Plus, I cannot leave him home alone to do these things like a parent could of a typical seventeen year old. We try our best to accommodate and it's clear he very much NEEDS this routine right now. Like all things with autism, I have learned to just go with it. It will pass but it's sometimes very hard to watch your child struggle. </p><p>Just this morning my husband offered a trip to the beach for Kiddo and the look of sheer panic that went across of his face broke my heart. We tried to show him where he could fit it into the schedule but we realized quickly it was not going to be pretty if we attempted to this outing. On any other day he would be the first one running to put on his swimsuit and grabbing a towel to go. My husband and I were then stuck in the grey area of knowing he doesn't want to change the schedule but he also loves that outing. I could see Kiddo start to sweat. I knew immediately this would result in a meltdown. He just didn't know how to communicate to us "I want to go but not today." </p><p>And this is where it gets tricky because I don't want him to think we are taking away this thing that he loves because he just doesn't want to do at the moment. Thhen he will fixate and meltdown over it. I have to show him it's okay to say "No thanks!" I talked him through it. He quickly latched on to "Beach is finished!" despite not having gone to it at all. Whatever, it somehow calmed him and kept him from melting down. Although I suspect the use of his emergency anti anxiety medication that I wound having to give him helped too. </p><p>He is currently hiding in his room as I type this. Very much avoiding us. I am sad that just offering something that should be fun stresses him out so badly. I am worried that for many Sundays to come he will bring up "Beachgate". (How dare we?). I feel bad that my husband just wanted to do a fun thing for Kiddo that in the past he would be very happy to do. The fact that someday he may just decide "I'm not doing this routine anymore" just kind of kills me because that's usually how stuff like this goes. He just decides he's done with it and we'll have to learn as we go whatever it is next he does to self soothe. </p><p>I know this is the aftermath of COVID lockdown. Never did I ever imagine that I would have to give my son his anti anxiety meds because of a beach trip suggestion but here I am on a Sunday morning listening to him sing "Thomas' Winter Wonderland" at the top of his lungs because apparently it's the time of the day we do that now. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX3Dfsv9CJLiq6tYBy-oOoAD2Jlv5YtkDe4ivGdW5SZXuX1VOIiIMBWFtdnNIAhOiAo8YzxfuAZ-3E4GvyPe5MdO6l6GH_pncBFbr-Fmx6e1MzG1dg6bLQe-K7j5hZI7vNRccDjTpRLCI/s1334/58606423_10156205143805732_7280822495685378048_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX3Dfsv9CJLiq6tYBy-oOoAD2Jlv5YtkDe4ivGdW5SZXuX1VOIiIMBWFtdnNIAhOiAo8YzxfuAZ-3E4GvyPe5MdO6l6GH_pncBFbr-Fmx6e1MzG1dg6bLQe-K7j5hZI7vNRccDjTpRLCI/s320/58606423_10156205143805732_7280822495685378048_n.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Flashback to a day at a beach. Clearly not a Sunday where one must sing the entire Glee catalog. </div><br /><p><br /></p><p><br /></p><p><br /></p>Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-59204910232061422792021-06-23T18:54:00.000-04:002021-06-23T18:54:32.694-04:00Sometimes It Snows In AprilSometimes it snows in April<br />
Sometimes I feel so bad, so bad<br />
Sometimes I wish that life was never ending<br />
But all good things, they say, never last<br />
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All good things, they say, never last<br />
And love, it isn't love until it's past<br />
Prince<br />
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It's funny how it sneaks up on me. For the most part I just cruise along, following Kiddo's lead on where we need to be. If he's happy, then I'm happy. I felt that I have made my peace with what life handed us years ago until something comes along that rocks the boat. <div><br /></div><div>The latest culprit? Prom season. Kiddo is seventeen. While he has expressed an interest in girls, (Two of which he was juggling at the same time!) , he's never done the traditional dating thing. At all. The relationships pretty consisted of occasional hand holding and sitting next to each other at school. To be honest, that's pretty much all I could handle him doing, so that in a way worked out. </div><div><br /></div><div>But I recently started seeing my social media feed flood with prom pictures and it was the first one that really got to me. It was a young woman that had been in the same infant playgroup with him as a baby. Then a few graduation pictures. Then a few videos of seniors finding out what colleges that they had been accepted to as they opened their emails. Finally, it was teens proudly holding their newly acquired driver's licenses and posing behind the wheel of a car. It was shot after shot of his neurotypical peers doing neurotypical stuff. </div><div><br /></div><div>And I "liking" and adding the appropriate remarks of "Congratulations!" and "Wow! They look fantastic." because I truly do enjoy seeing these moments shared. (Seriously, if you have ever thought "Oh I shouldn't put up all these pictures on my vacation.", ignore that feeling and upload 75 pictures of your trip to Cancun. I'm the kind of person that will look at every single one of them.) </div><div><br /></div><div>I didn't even want to post about this. I didn't want to look like a whiner. Nor did I want to be accused of not accepting my son's autism because with online autism stuff, it can go south fast really quickly. I was in no mood to be told I was an abliest piece of shit and all that jazz. I swallowed it. I keep it quiet. I didn't want, God forbid, any of those parents to pity us or worse, feel sorry for us. I just needed to be in my feels, as the kids say. (Or will no longer say as I, a 47 year old woman, just used it.) </div><div><br /></div><div>I am not even sure why it hit me so hard this year. Like I knew it was coming. I'm not in denial about his growing up. I'm chalking it up to COVID and the year that was robbed from us. I guess I would have been in a slightly more secure place had we a year of job training behind us that I could lean on. I could comfort myself with that. Seeing as we are not only missing all that time but are now relearning things, it just hit me hard. </div><div><br /></div><div>Because sometimes it snows in April and I have to just bundle up and deal with it. You can be fine with it all for years. You can be an advocate, writer, public speaker and general loud mouth for all things autism and it can still knock you on your arse when you least expect it. It doesn't make me a bad person. It makes me human. Feelings are fluid. They can ebb and flow around your heart and in your mind. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ3vqYKikwvFAE8_IIiNqE85hTNEmWFuwGe9Niwfwc0yD1b0EwcmeDsbFA3MQlYFgbM8FyizLFOxiFvDZKG22Wp-pQ0e6np8Wh98DUDR4uHMdKgYQNzKHJKOQKCoWwAhiZq1cQKR9yHSY/s500/IMG_6861+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="165" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ3vqYKikwvFAE8_IIiNqE85hTNEmWFuwGe9Niwfwc0yD1b0EwcmeDsbFA3MQlYFgbM8FyizLFOxiFvDZKG22Wp-pQ0e6np8Wh98DUDR4uHMdKgYQNzKHJKOQKCoWwAhiZq1cQKR9yHSY/s320/IMG_6861+%25281%2529.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Sometimes the best way to melt the snow is with a laugh. Me, 1992. I decided to go to prom as a disco ball. </div><br /><div><br /></div><div><br /></div>Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-36939370248168491592021-06-04T09:39:00.001-04:002021-06-04T09:39:07.497-04:00What am I suppose to do now? This question has been in my head since the day I first heard "autism" being used in regards to my Kiddo. It never goes away and it's never been answered.<br />
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Sometimes we have really nice moments. Long stretches of just good times. Usually when we have a good solid chunk of a routine being followed. He's content. I feel slightly confident. Clearly, we're on the right path.<br />
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Then the question reappears.<br />
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What am I suppose to do now?<br />
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For every phase we've left behind us, for every struggle and challenge we have had to rise to, another one quickly slides into it's place. I'm forever waiting for that other shoes to drop and it will because Kiddo hates wearing shoes.<br />
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He's 17. The window towards aging out of school is closing in on us. The worst part of that scenario is that Kiddo is completely and innocently oblivious to it. In his mind, he probably thinks he will go to school FOREVER because that's all he knows.<br />
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I'm a former job coach and Pre Voc instructor. In my mind, I have always thought "HE. WILL. HAVE. A. JOB." Even if I have to start something myself, my boy will be earning a paycheck. Now that we are closer to that part of his life, the reality is I'm probably going to have to do just that. Unless something happens overnight and thousands of resources and supports are put in place for disabled adults. Seeing as we, the autism community, can't even all agree about whether we should say "autistic" or "person with autism" without a fight, I don't have much hope that these much needed changes will happen.<br />
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And that's when I think again "What am I suppose to do now?" the most. Because just once I really want to be a little selfish, a little lazy, a little chill and laid back and NOT have to worry about creating something out of nothing. I want someone else to do it. So very badly. I don't want to be a leader or an advocate. Sometimes, I even want the problems that we won't have. That we will never have. Just so I can have the novelty of them. Please, I would relish fighting with my Kiddo over wanting his own car or staying out past a curfew.<br />
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Even writing this blog lately, I find myself thinking "What am I suppose to do now? What am I suppose to be writing about?" I've been doing this for almost nine years and one trend I have noticed is by the time you have read this blog post, ten new autism blogs will have been born. They will be fresh off the boat into Autism land with their kid only diagnosed a short while ago. I will look at them in awe wondering how the Hell they are doing that. I was barely treading water when we first dived into all of this. I have a hard time finding other blogs dealing with teenagers on the spectrum. As a friend pointed out to me "Well, it looks like it's gonna be you doing it."<br />
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Now we are also back on an anxiety spike. Gee, thanks COVID. We are really seeing the long term effects of what being out of school did. While we were lucky that he was able to return to in person, the program is now vastly different due to COVID restrictions and for lack of better words, it sucks. Gone are the trips out shopping to foster independence and job training. Just in school, all day, It's just not the same at all. You can practice those skills all you want in a class but a job site cannot be replicated in a classroom. Kiddo, according the his teacher, is doing great at school. Like clockwork though, he lets it all out when he comes home. While anxiety in the past has been destructive and aggressive, it still is very much present lately. He is scripting galore and wants us to join him in the misery. Yes, we are harassed into repeating the scripts with him. Sometimes I rattle off the same twenty or so lines and it's enough to snap him out of it. It makes him feel content enough that I have heard him. Sometimes though, I am just so tired of doing it. His anxiety gives me anxiety. Add in the fact for the last few nights, he's just not sleeping. Therefor, we are not sleeping. It's hard to stay sharp and focused on what he needs when all I want to do is crawl under a blanket and sleep for a hundred years.<br />
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What am I suppose to do now that we have this much anxiety again? I know we have had a lot of changes lately with school. How long will it take till this new normal becomes our normal? I remind myself of the three month rule. (Which you can read about <a href="https://autismwithasideoffries.blogspot.com/2019/02/the-three-month-rule.html" target="_blank">here.</a>) There will be a moment down the road where we will slid back into a comfortable groove. I hope. <br />
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But what am I suppose to do now till that happens? Figuring that out is hardest.<br />
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Kiddo's answer? Order more fries. Okay, he might be on to something,</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEXoabJtTfeEoykUE1sp3Xk2bPvqdT60APdsKBtfeGSmrRhkUNFwYOgp2fkvFp5uforlim3GR1FuUtvdkcJSTHHiYZ_mb5T3NhjA7jYGbO5EJn-SytLhXK_v5CYMM8VBfKYqTlnj5YKzM/s606/IMG_6133.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="605" data-original-width="606" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEXoabJtTfeEoykUE1sp3Xk2bPvqdT60APdsKBtfeGSmrRhkUNFwYOgp2fkvFp5uforlim3GR1FuUtvdkcJSTHHiYZ_mb5T3NhjA7jYGbO5EJn-SytLhXK_v5CYMM8VBfKYqTlnj5YKzM/s320/IMG_6133.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com3tag:blogger.com,1999:blog-2644538309673050572.post-27690150531993754042021-06-02T15:06:00.000-04:002021-06-02T15:06:56.740-04:00Hello Fries! <p> *taps mic* </p><p>"I'M BACK!" </p><p>Well actually, I never really went away. I just stopped using this blogspot for my content. Ironically, just around the time I was starting to suffer from a serious case of writer's block and social media burnout in general, COVID walks in like the BAMFer that it is. In an effort to survive, I just made the choice to just keep our updates on life on my social media accounts. </p><p>Here are the places you can find us! </p><p>Facebook <a href="https://www.facebook.com/AutismWithASideOfFries" target="_blank">Autism with a side of fries</a> and now with that blue check mark. We so fancy now! </p><p>Instagram <a href="https://www.instagram.com/autismwithasideoffries/?hl=en" target="_blank">Autism with a side of fries</a></p><p>Twitter <a href="https://twitter.com/FrenchFryInc" target="_blank">Autism with a side of fries</a> </p><p>I'm still cranking out the content but I have to say lately I have been itching to going back to writing more long form stuff. </p><p>And now that life is sort of returning to a new normal, I actually have the time and more importantly, the desire to do so. I'll spare you the what I learned about myself during the time of COVID. I think I learned what many parents did. I am absolutely not made to homeschool my kid. Period. Oh mother of mercy, I am NOT! </p><p>So what's the status quo at the moment? Well, Kiddo just turned 17 and we now have roughly 350 something days till he becomes a legal adult. Which Jesus H, didn't I just have this kid? Like I still have numb spots on my c section scar. How the hell did that happen? <br /><br /></p><p>And frankly I am frighten because we are that much closer to the big dramatic jump off the school cliff into the moat of adult services which in case you did not know is bone dry. A lot of last year when we were home with nothing to do, I just sat there and stewed on that. I was getting a giant preview of what life was going to be like with him post 21 and let me tell you something, it wasn't good. At all. </p><p>Combine that with his entire world being tossed upside down and out the window I was beyond a hot mess. Like I was no longer the cute internet hot mess you have all known. This was beyond using too much dry shampoo and chugging coffee like my life depended on it like most stereotypical mom memes. I was just trying to get through the day while watching every single skills we worked for slip away from my son. My heart broke multiple times a week. It was rotten and frankly not very inspiring to the Ye Old creative process of blogging. </p><p>But I have always said that you can have a pity party, you just can't stay at it. So the last few months I have been slowly pulling myself out of the muck. </p><p>One thing I did was put myself out there when I saw a project that will help not only my own's son's future but others just like him. Mama Fry got herself a Trustee job! I KNOW! Lord help the <a href="https://www.moffc.org/" target="_blank">Monmouth Ocean Foundation For Children</a> for saying "Yeah, she''ll do." after I interviewed. Fun fact, it was done over zoom and it wasn't until after the interview was done that I realized I still had my mascara tube in my bra. (Make up tip. Warm up your mascara in your bra. It really does work!) <br /><br />Despite that, they still took me on and let me tell ya the cool AF project we are working on now. A 21+ adult program!! Yep, yours truly is working on getting this thing built because I am selfishly motivated by having a kid who will soon be an adult. Nothing kicks your ass into gear like fear. Ain't that a effing hoot?!! This isn't some boring babysitting warehouse of people sitting around. This will be a continuing education and vocational training experience! It's gonna be SWEET!</p><p>Okay, so this is me signing off because Kiddo just rolled on up from school and I have to roll on out with him off to music therapy and then "window fries" because some stuff does not change. I may be able to take long writing breaks but mom breaks? HA! As if! </p><p>This felt good to do. Okay, my challenge to you. Go do something you haven't done in a long ass time. Legally, of course. </p><p>Or not. I don't judge. ;-) </p>Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com1tag:blogger.com,1999:blog-2644538309673050572.post-40356246022372721062020-02-15T08:30:00.003-05:002020-02-15T08:30:47.884-05:00Chase's Friend Zone Dining out. This is not an easy task when autism is a member of your party. It can be challenging and sometimes downright impossible. Eating out is WORK for our kids. It just is. I've written countless lists and tips for those of you have a little ones on how to make it sort of work. I've had successful outings and downright "Holy Hell. Pack this up. Throw money on the table and the get the heck out of here" ones.<br />
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What if I told you that there is one restaurant where you never have to worry about how much noise your kid might make? What if I told you there was a place you could go where not one patron would bat an eye at your kid getting up and wandering around flapping if they needed a sensory break? What if I told you there was a place where you and your spouse could almost feel like you were on a date again while your kid was playing with the toys WITH adult supervision?<br />
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Sounds almost too good to be true, right? Enter <a href="https://www.rivstrhub.com/chase-s-friends-zone" target="_blank">Chase's Friends Zone</a><br />
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Chase's Friends Zone is a sensory friendly dining area that's part of the Riv's Hub restaurant in Toms River, New Jersey. The owner's grandson was diagnosed with autism and let me tell you something, this set up is ACES! This couldn't have been a greater experience. It's a private dining room with it's own special entrance. There is no loud music playing or seven different TV blaring with various shows or sporting games. It's so quiet! Check this out. <br />
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The hostess told us to sit where ever we wanted. Kiddo picked a spot closest to this play area. </div>
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He hit the trains and completely ignored my husband and I. </div>
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A lovely waitress hooked Mama Fry and Daddy Fry up while another staff member actively engaged with Kiddo and another child that was also there. Within minutes she had both Kiddo and the other child there playing TOGETHER with blocks. We didn't even have to get up and helicopter over him. It was almost like we were on a date! </div>
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Forgot the headphones? No problem! They have a bunch they'll let you borrow! </div>
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Every table had a basket of fidget toys and bubbles. Imagine going to a place where you didn't have to bust out the big mom purse with all the stuff. They have you covered! </div>
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Kiddo gives two thumbs up for their flat bread pizza and side of fries. The amount of fries they brought out was almost comical. He was delighted! The waitress was so engaging with him and with us. Daddy Fry and I got a couple of burgers which were both really good and I'm not just saying that because I didn't have to cook them. They were great! </div>
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They give each family a piece to sign for their wall. If you go, look for us on the wall! </div>
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And because this was a new place to us and not our typical Friday routine, autism and anxiety did come with us as well towards the end but let me tell ya, they had our backs there too. Kiddo was getting a little anxious, and a bit loud but you know what? No one cared! The other family was also have a bit of a hard time transitioning to go home but you know what? We didn't care. Like whatever. It happens. The staff quickly got us our check. Kept an upbeat, no big deal attitude which helped keep Kiddo calm and we were on our way with our leftovers. It was probably the most relaxed I have ever felt while dining out with him and I'm not just saying that because that peach sangria I had was killer. We talked with each other, with the other family, with the staff. It was just such a nice experience. <br />
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I know this is one of those first of it's kind type places and if you are reading this and thinking "Well, that's great for her but there is nothing like this here.", I hear you. Please know that for many, many years there was nothing like this here either. This is a start though. Share this post. Talk up this story to others. You never know why might read it who can try and bring a similar thing to a place by you. We will absolutely be back. If you are in the area, you can book a table on their website or give them a call. We went at an "off peak" time but there were plenty of tables. <br />
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A big side of fries salute to Chase's Friends Zone at Riv's Hub!<br />
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com5tag:blogger.com,1999:blog-2644538309673050572.post-7581482081517758022019-09-27T14:23:00.003-04:002019-09-27T14:27:31.822-04:00"Mix it up!" We have been working with a behavioral therapist to address some of the challenges we have with Kiddo's behavior. Now "Because Autism" is at play here, accepting change has not always been met with rave reviews with the boy. However, "Because Life", we needed a way to figure out how to make it a bit more tolerable for all involved. Add to fact that Kiddo is now fifteen and several inches taller than me, there's no "making him" do anything he doesn't want to do.<br />
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Kiddo loves "performing" for therapists. It's very rare where they will actually see the behaviors we talk about with them. Especially with the guy currently seeing Kiddo. Kiddo freaking LOVES this dude. We are very lucky to have him. I consider it my good karma for whenever I've let someone go ahead of me when merging on a highway and I give them the "Go ahead" wave. I mean, that had to pay off eventually.<br />
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And for whatever reason, the one thing this guy has taught Kiddo that has caught on so well with him is a simple three word phrase, "Mix it up!".<br />
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Honestly, that's its. It's literally been that simple. I don't know if it was time, maturity, this guy's aura, the alignment of the planets, etc. All I know is, all we have to do is say "Mix it up" when we have to announce a change and Kiddo just repeats it and accepts the change. I KNOW!! He constantly tells him to "Mix it up". He won't let him do anything the same way twice during their sessions and I think that has helped driven the point home. It's just that all the sudden, Kiddo is getting that change happens.<br />
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Like we went through a massive power failure. A Hell of a storm ripped through here a while back and knocked out the power. For most people, this inconvenience wouldn't be much more than an annoyance that their AC wasn't working on a hot night. (Which OMG, Mama Fry is way too perimenopausal to be dealing with that bullshit.) For us, I had a legit panic attack when I realized that Kiddo would not be able to have his nightly viewing of "The Polar Express". I couldn't even hook him up with the portable DVD player because the DVD was stuck in the machine. No WiFi, so no streaming. Nothing. It was a Tom Hanks free zone.<br />
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But then it wasn't. Right around the time we would usually be settling down in front the TV, Kiddo decided to "Mix it up". He started scripting the entire movie line for line from the start to the very end. Including dancing around during the "Hot Chocolate" song and falling to the ground in a dramatic fashion recreating a scene when the characters in the movie fell down. To quote my husband, "Oh this is so going in your blog."<br />
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OF COURSE IT IS SO GOING IN THE BLOG! THE DAMN POST WROTE ITSELF!<br />
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I have watched this damn movie with the Kiddo every night since we were stupid enough to introduce him to it when he was three. Three, people. He's fifteen. So let's think about that for a moment. That he just saw his whole night time wind down routine get tossed aside and he "Mixed it up" and found his own way to cope. In fact, I think was safe to say he coped better than I did. (I'm 45 and hormonal. Air Conditioning is my god now, people.)<br />
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Now while I'm all like a dog whose food bowl got moved with my routine, Kiddo was all "No big deal! Mix it up!". He still didn't care that the power was out or that it was hot. He was beyond delighted when I told him that we would be going to stay at Granny Fry's. (who had power and my sweet boyfriend, Air Conditioning.) He did not care at all when I said staying at hers meant that I would have to drive him to and from school instead riding with his beloved bus. He kept saying "Mix it up!" and just thought it was a big adventure even though his parents are thinking this a bit of a pain in the arse.<br />
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Basically, it was the adults in his life that needed the social story more than he did.<br />
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I'm not saying this will work for every and any kid. Like all stuff with autism, when it works, it works. Don't question that shit. Seriously, don't do anything to draw attention. Act cool. They can smell fear.<br />
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But sometimes, it's really important to bring in a pro. I have no problem letting him think he got one over on us because it took an outside person to teach him something. Dude, who do you think hired the guy? ;-)<br />
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Some things we don't "mix up". His need for Fruit Loops and mine for coffee. </div>
<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com7tag:blogger.com,1999:blog-2644538309673050572.post-10587702123455090932019-09-09T20:18:00.001-04:002019-09-09T20:18:12.457-04:00The Waiting The waiting is the hardest part<br />
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"The Waiting" Tom Petty and the Heartbreakers</div>
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The start of a new school year with the Kiddo. New classroom. New teacher, Some new paras and some new classmates. After three years with the previous teacher, a teacher who had to pick up and rebuild the Kiddo when we started there, I'm a little more nervous about this change that the Kiddo. </div>
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The toughest part of this all will be the waiting to see if this change works and there is no way to rush it. At all. As someone who has never liked waiting, it's once again a reminder that if you have a personal issue you need to work on, destiny will make sure you will get plenty of opportunities to learn those lessons through your kid. You're looking at a gal who when her parents took her to Disney World as a 5 year old, looked at the long line to get in and immediately left her family to go stand with the family that was at the front. I can't exactly pull this move off with him. I have to wait around and see what autism and this change is going to bring.<br />
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I can ask him after school "How was your day?" and even on ones where I know exactly how it went because there was an email sent home or worse, a phone call, he will always say "Good" because he has learned this is the standard social norm answer. I was once again reminded of this when on Saturday afternoon Kiddo announced how a certain kid in his class got in trouble. What exactly they did and how the classroom aide reacted to it. I had to wait a full 24 hours before I really heard how his day went because it took him that long to formulate how to say that. To process what went on and how it made him feel. I know a lot of parents don't get the full run down of their typical kid's day either but I'm willing to bet that if one of their classmates threw a desk, they might mention it to you a lot sooner than my Kiddo did. I have to worry and wonder "Did this scare him?" or "Did this inspire him for later on down the road?"<br />
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This class placement is also a reminder of the waiting that didn't work out. So many years the focus was on his academics and waiting for the moments he would catch up with his typical age peers. Its become more and more apparent that he won't and that's fine. I've always said I didn't care about handwriting just so long as he could sign a paycheck. I didn't care about math skills past the basics. If I knew he could look at his money and be able to figure out what he could buy on a menu, that would be okay. I waited for more language and while some of that came, most of it is scripted lines he repeats as self soothing mantras. I keep waiting for more spontaneous conversation. Sometimes it happens. Sometimes not.<br />
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I kept waiting to catch up and it didn't happen. He needed to wait for me to catch up and realize that.<br />
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So his coursework this year will have a greater focus on life and job skills and believe me you, I have wanted and waited for that too. As a former Pre Voc teacher and job coach I have been asking about "When does job sampling start?" so much I'm pretty sure his IEP team has made it a drinking game. I'm glad he'll be doing these things. I know he will be happy doing them. Kiddo likes to feel like he's useful. If this Kiddo was just a student to me, I know this would be the right choice. I would tell those parents we shouldn't wait on this. We need to start job training.<br />
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I guess I am still waiting for that moment when I wouldn't be constantly doubting myself. Waiting to stop feeling sad about autism when it's brought so many wonderful people into our lives. Waiting to remember that this is where he is suppose to be without having to remind myself our situation is so much better than it was and I'm willing to wait to see what kind of progress we might make down the road.<br />
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The irony is Kiddo HATES waiting. Multiple IEP goals type hate. So very many social stories type hate. I'm still waiting for him to learn and accept waiting. I guess if I ask that of him, I can wait and do the same.<br />
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I'm still waiting to get off the Isle of Sodor. 15 years and counting should give me tenure by now. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com3tag:blogger.com,1999:blog-2644538309673050572.post-54579292410052681362019-07-18T20:38:00.001-04:002019-07-18T20:38:34.666-04:00Autism and the Dentist<div>
Autism comes with a lot of doctor visits but if there was one that is the most challenging, I'd have to say it's going to the dentist. Kiddo is fifteen now, so we have had our fair share of visits. Much like me, he hates the dentist and I don't blame him. You're on your back, with some bright ass light bulb shining in your eyes while some guy has his hands in your mouth, scraping metal tools against your teeth. Honestly, just typing that skeeves me out. It's gross and it's scary and I can't imagine having to face it with communication and sensory challenges to boot. </div>
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But it has to be done. This is a non negotiable. He is going to need his teeth to chew. It's hard going on these visits but here are some of the tricks I have learned that make it a bit more doable. </div>
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<b>1)Finding the right dentist</b>. You're best bet for finding the right fit for your child is to look for a pediatric dentist. A dentist that specializes in children is much more likely to have experience with the special needs population. Plus, they usually have a variety of tricks up their sleeves to distract from the scary stuff. Kiddo's dentist has video games in the waiting room and flat screen TV's over each exam chair with access to Netflix. Ask your child's classmates parents who they go to see. That's one thing I have learned from the Autism Mom Mafia, if there is a person to see, we'll all know about it. Likewise if there is someone to avoid at all costs.<br />
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<b>2) When you call to schedule the appointment, make sure you tell them there and then that autism is about to roll up on that joint.</b> I'm all for spreading autism awareness where ever we go but for stuff like this, it's better for all involved to give them a head's up. Kiddo's dental office likes to get us in as either the first or last appointment of the day. The office is less crowded. No one is running behind. It's usually quieter. (Well, it is until we show up.) This is also a time to fill them in on sensory challenges they are about to deal with. How verbal your child is. If this is your first time going there, do yourself a favor and ask if they can email you all the "new patient" information forms so you can fill them out at home. I don't know about you but trying to wrangle my Kiddo in a new place while trying to fill out a half a dozen pages of medical history and insurance information is not my idea of a good time. </div>
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<b>3) That first visit. Let's just say keep the expectations low and any actual dental work that gets done is gravy.</b> This is more of a "Getting To Know You" than a medical appointment. Again, this is where a good pediatric dentist is key. They get it. They usually will give rides in the chair, let the kids see the instruments, and talk about what gets done with the child in age appropriate terms. If you have an older sibling, have them have the actual exam and be a model for your child to watch. If you don't have an older sib, rent one. Just kidding but you can point out the other kids in the office getting their exams. Google dental visits! You think YouTube doesn't have videos of that? If they can have a guy video taping elevators, you know they'll have those. </div>
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<b>4) Comfort sensory items.</b> I usually bring a couple of fidgets for Kiddo to fiddle with during the exam. The best item that can help your child is what they already have in their office. X-ray bibs! I'm totally serious. They are just like having a weighted blanket on. Kiddo loves his weighted blanket but schlepping it to the dentist office is a bit much. This works just as well. </div>
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<b>5) Sedated dentistry.</b> This is a really good option if dental work is just too hard for them to handle due to fear or attention span. Sitting still is not something my son does well or at all and sometimes dental stuff can be complicated. Like when he chipped his front tooth. There was no way he could sit through all that. So yes, this is what had to be done. It does come with same extra prep work. You need to get your child a physical clearance exam a week before the dental visit by their regular doctor. They also aren't allowed to eat after midnight the night before the procedure. They'll most likely wake up cranky as Hell and nauseous to boot after the dental work is done. (Expect throw up. Have a bucket handy for the car ride home.) Kiddo was pretty sleepy for the rest of the day but by the next morning, he was back to fighting speed. The nice part about complete sedation is they were not only able to fix the tooth, but he got a cleaning and a full set of X-rays. I know some parents that even get a script for blood work to be done. I actually sort of joked that I was going to have a barber come in to cut his hair while we were at it. I may have taken full advantage of his hitting the pillow hard that night by cutting all his nails. (I totally did and I would do it again.) </div>
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Another option for dental work is good old fashioned "laughing gas". It doesn't knock them out but it will relax them and in my son's case, make them sing Cat Steven songs at the top of his lungs like a drunken sailor on shore leave. The bonus is it doesn't require getting a clearance from their pediatrician and they only have to refrain from eating for four hours before the appointment. It also wears off very quickly once it's done. They are back to business in no time. When Kiddo broke his front teeth the second time, (Yes, the second time. You read that right.) we were able to do it this way. Not only was the recovery time so much easier as it did not make him sick, it was a HELL of a lot cheaper. Which was great because when he broke his front teeth the THIRD time, (Yes, a third time. It's why I drink, people. ) we knew exactly what to do and my wallet didn't scream in too much agony. We now use laughing gas for cleanings as well. It just makes it easier for all involved.<br />
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<b>6) The most important thing to remember is to keep trying and keep going.</b> It's really tempting to let going to the dentist slide when you are raising a child with autism. There's a ton of other stuff you are trying to take care of and the idea of going, well, I get it. Sometimes it was just way easier to just blow off going. It doesn't do your kid any favors though. If anything this has become something my son and I have bonded over. A mutual dislike of all things dental related. I acknowledge to him that I know the whole thing sucks BUT like all parents I hold out some bribery over his head to motivate him to power through it.<br />
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Okay, so maybe I undo a lot of the cleaning he just got by going for milkshakes after with him but dammit, he's earned it.<br />
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See that how well that X-Ray bib keeps him calm? He only wants to throat punch us a little for making him get X-rays this time around. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com11tag:blogger.com,1999:blog-2644538309673050572.post-13235333675027792482019-06-27T20:28:00.001-04:002019-06-27T20:28:05.560-04:00Talking myself off the ledgeKiddo and I found ourselves on our own for dinner the other night. After a week of him being off of school, I was not cooking. He happily agreed and off to the local burrito place we went. Now before you say "HE EATS BURRITOS???", calm down. He eats plain cheese quesadillas which he calls "pizza" because they are melted cheese on a something crust like cut into triangles. I mean, he's got a point. This is fun when we go to order and he yells "PIZZA" and I then have to Kiddo to English translate to the confused server.<br />
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While we were tucking in, I noticed a car pull up in front of the joint. The windows were open and the cutest little fluffy dog was peeking out the window. I pointed it out to Kiddo, who got very excited because it sort of looked like one of our dogs. He started to get "flappy happy", as I call it and kept saying "That dog looks like Maya! That dog looks like Maya!". </div>
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But while he was scripting up a storm, I was watching a young girl get out of the car. She was probably twelve or thirteen. She walked into the restaurant and right up to the take out counter. It was then I realized she was picking up some take out while her mom was waiting in the car with the dog. She gave her name. She paid her bill. She waited for her change. She then carried it out to the car and off they went. </div>
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And I felt tears in my eyes. This is not something my child could do. I am not sure that he will ever be able to do. That mom didn't have to worry about her child clamming up with nerves and not talking. That mom didn't have to worry that the girl wouldn't get the right order or that she wouldn't wait for her change. This child did the same exact thing that my parents had me to do at that age when they were teaching independence/too tired to get out of the car let's send the kid in to get the food. They didn't even have a second thought about it. </div>
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This is when I have to talk myself off the ledge because I can easily wrap this sadness around me like a blanket. You think our kids need social stories? HA! I had to start reminding myself that only a couple of years ago we wouldn't be able to even sit down in a restaurant to eat. It was grab and go and usually through a drive thru because even getting out of the car was a production. I then also reminded myself that even going to a burrito place was progress. A french fry free meal? Groundbreaking! </div>
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So yeah, he still needed help learning how to focus to order and I often find myself having to repeat what he says because the server doesn't hear him or understand him. I have to remember that he is in fact trying. He tries every God damn day to exist in a world that isn't set up to be kind to those with a different neurology than his. </div>
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If he can keep trying, I can. I will get off this damn ledge because it doesn't serve me. It doesn't help him and I. We can keep on chugging along because clearly that's what we're suppose to do. Yes, sometimes I will get sad about this but I need to wipe my tears and my attitude aside. If experience has taught me anything, I just have to feel the feelings and get on with it. What's my choice? What's my other option? Wallow in all the stuff he can't do? Trust me, I've done it and I know enough that I will again. It's a tough cycle but it's part of our lives.<br />
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I guess what I am saying is. I'm still surprised how sad I can feel some days about this. I thought I would be use to it by now but there's always new ways it can creep up on you.<br />
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Luckily though, the good stuff can sneak up on you too. So I'm just holding on for the next milestone he might hit. Might not be anywhere near as independent as picking up the take out order but he's surprised me before and loves proving me wrong.<br />
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As milestones go, Kiddo being so sweet to our scared dog during a thunderstorm might be my favorite. (Or being the vacuuming champion but mostly the empathy thing.) </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com7tag:blogger.com,1999:blog-2644538309673050572.post-48617199489055150212019-06-21T09:47:00.000-04:002019-06-21T09:47:45.536-04:00Chore time<div class="" data-block="true" data-editor="4pdc8" data-offset-key="feioj-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="feioj-0-0" style="font-family: inherit;">Gather round Fry Family! We need to have a family meeting. Apparently, some folks on social media feel I'm some sort of meanie because I "make Kiddo do chores like vacuuming and taking in the groceries". </span></div>
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THE HORROR!!!!!! </div>
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<span style="font-family: inherit;">Well, I suppose I ought to start this response with a "Thank you" because if it was not for your fervent devotion to monitoring possible screw ups in my parenting choices I wouldn't have a topic to post. So props to you for being my muse! *SMOOCH!* </span></div>
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<span style="font-family: inherit;">But now, I have to go Jersey on you. Buckle up, Buttercup. I have a lot to say on this. </span></div>
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<span style="font-family: inherit;">First off, I am his parent and part of my job is to raise him to know basic life skills. In fact, I'm like the perfect person to do these sorts of things because before motherhood and autism had me "level up", I use to work with autistic teens and adults as a job coach and a Pre Vocational Instructor. Like it's in my DNA, Boo. I have to ask. Did you NOT have chores around your house as a child? Because I hate to break it to you but if your parents didn't, they messed up. They just did. Chores are the first steps in job training. FOR EVERYONE. Did you think a different neurology would give Kiddo some sort of free pass from chores? </span></div>
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<span style="font-family: inherit;">Second. He lives here. He helps contributes to the mess. He can help clean things. That's just basic common decency. Everyone that lives in my house contributes to it's upkeep. Hell, even my dogs know to follow Kiddo around when he's eating and dropping snacks. They do their bit between vacuum sessions. </span></div>
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<span data-offset-key="2k5lh-0-0" style="font-family: inherit;">Third. I'm going to guess some of you are parents complaining are parents of young spawn. Spoiler alert, our kids grow up. Guess what? They can like do stuff for you and it's like helpful and shit. I'm pretty sure my Dad was dancing a gig the first time my brother mowed the lawn. My mom probably smiled with joy the first time I folded a load of laundry. Your kids might not be able to do what hes' doing now but you can and you should find age appropriate chores for them to do. Believe me you, it's a lot easier to start teaching them these skills when they are three then when they are thirteen. </span></div>
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<span data-offset-key="56n3i-0-0" style="font-family: inherit;">Fourth. The Kiddo is FIXATED with the vacuum and I have two dogs. Like I'm NOT going to use that fixation to make EVERYONE happy? Focus on their strengths! For any kid. My mom saw I liked to cook. Guess who got put in charge of making dinners some nights? I got to make a dish I liked. She got to catch up on her PEOPLE magazine. Everybody wins! And let it be known there was a time he was TERRIFIED of the vacuum. He straight up went running to me to hide when he heard my husband take it out of the closet. Just the simple act of him doing it on his own now without being asked is a symbol of the hard work and progress he has made. </span></div>
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Happily cleaning the rugs! </div>
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He even does my Mom's house because getting to a vacuum a new place to him is FUN! (Plus it's a nice thing to do for his Granny Fry and he knows she's gonna pay him in ALL the good snacks.) </div>
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You know, it will be seven years this August since I started writing this blog and it's amazing to me what people will say in response to what I put out there. Both the good and the bad of it. The folks that have a problem with some of my choices so much so that they feel the need to hunt down my email and write me a letter complaining about me having my kid bring in shopping bags from my car though, I have to ask, who the Hell is watching your kids when you are doing all that? Like aren't you busy too? Aren't you tired? I see lots of stuff online I don't agree with or don't like. You know what I do? I scroll on! Did telling me you think it's wrong I make him do things around the house make you feel that much better? If so, I'm sending you my bill. "Window Fries" runs aren't cheap. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com10tag:blogger.com,1999:blog-2644538309673050572.post-22527471435589068292019-06-15T09:26:00.000-04:002019-06-15T09:26:23.752-04:00 My speech. *taps mic* Is thing still on?<br />
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Okay, okay. I get it. I'm a blogger who hasn't blogged in a really long time and frankly, that's not a good look. I can't even say I really had writer's block. I just had "I don't want to talk about it" block. What can I say? I'm a complicated person but that's part of my charm.<br />
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Anyway, what I have been doing is some public speaking gigs and that's been pretty cool. Scary and nerve wracking AF but very cool. I've met a lot of nice people who are up to their elbows in autism just like me. Being an autism family sometimes makes me feel like I am forever walking into a cafeteria and not knowing where to sit. Going to events like this? Well, I have my pick of a slew of tables. It's really nice. <br />
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My last gig was the other night for this kick ass school here in New Jersey called Spectrum 360. (You can check them out <a href="https://spectrum360.org/" target="_blank">here.</a>) At the end of the night a gentlemen who's name I have forgotten already (Forgive me. It's summer break for Kiddo. My brain is already mush.) asked me to put my speech up on my blog because he really liked it and he wanted more people to see it. <br />
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So since I need to remember I'm suppose to be a blogger and I have the content already, this one is for you guy I met at the end of the night! By the way, it's kind of long. So go get a cup of coffee now and settle in. :-)<br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Good evening teachers, paraprofessionals, therapists, </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">and all the rest of the Autism Entourage. It’s wonderful to </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">be here today. My name is Eileen Shaklee but you can call me “Mama Fry”. and I am the writer of the blog called </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">“Autism with a side of fries”.</span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A little about me. Before Motherhood and Autism had me</span></div>
<span style="font-family: Arial; white-space: pre-wrap;">“level up”, I was on the other side of the IEP table as a job </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">coach and Pre Vocational instructor at the Children’s </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Center of Monmouth County. (Which I bet some of you </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">might have worked there before you came here. If so, </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">HEY!) When my son was one, I decided that I </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I needed a break from all things special needs. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Cut to the scene about eleven months later when an early</span></div>
<span style="font-family: Arial; white-space: pre-wrap;">interventionist came to my house and casually threw it out </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">there “So he probably has autism but there are lots of </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">kinds.” </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> It was in that moment I felt like Michael Corleone in the </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">The Godfather movies </span><span style="font-family: Arial; white-space: pre-wrap;">“Just when I thought I was out, Autism pulled me back in.” </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Since I started my journey as a parent to an autistic child </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">there are so many times I want to reach out to those </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">former student’s families. I have so much I want to say to </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">them. Mostly, I just didn’t know. Anything. Nothing. Zilch. </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Zip. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Now I’m not saying “You pros know nothing.” and please </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">don’t sit there thinking that I or all parents don’t like you. </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Quite the opposite. I am forever grateful there are so</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">many willing to go into this field. It’s not like you’re going</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">into this for the money. I even give really good gifts</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">at the holidays. Not just another coffee mug either! </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Seriously,I took one of my son’s former teachers to go see </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Cheap Trick with me in concert. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I’d just like to share with you a few things I have learned </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">since switching sides because what I have learned time</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">and time again is that BOTH sides of the IEP table doesn’t </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">always know the full story. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I had no idea what it would be like to read all the notes, </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">data, and paperwork with your baby’s a name on it. I get it </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">now, both the good and the bad of it. If there is one thing I </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">could stress to professionals now is that Autism Parents </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">have a serious case of Communication Notebook/Phone </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Calls from School PTSD. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Don’t believe me? The ring tone on my phone from the </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">school is the old Irish drinking song “Whiskey in the Jar” </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">cause that’s usually what I feel like drinking after some of </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">those calls. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I know you’re not calling just to shoot the breeze on what </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">happened on the Real Housewives last night. Whatever is </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">coming with that call is going to be heavy. However, I also </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">know you may have sighed before picking up that phone </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">before dialing.</span><span style="font-family: Arial; white-space: pre-wrap;">I usually sigh when picking up. </span><br />
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<span style="font-family: Arial; white-space: pre-wrap;">Here’s another tip </span><span style="font-family: Arial; white-space: pre-wrap;">from me to you. Please start with “He/She is perfectly fine.” </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The weight of the words on these reports and calls are often seared </span><span style="font-family: Arial; white-space: pre-wrap;">into our memories. We take them personally, even when </span><span style="font-family: Arial; white-space: pre-wrap;">t’s not what you mean to do. What can I say? Our kids </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">aren’t the only ones that are kind of complicated.</span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (And Bless my kiddo’s school nurse’s heart whenever she </span><span style="font-family: Arial; white-space: pre-wrap;">calls and asks “How are you?” and I always reply “I don’t </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">know. You tell me!” because that’s gonna depend on her</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">answer. At least she’s always sweet enough to ask!) </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I appreciate honest feedback about my Kiddo but if he’s</span></div>
<span style="font-family: Arial; white-space: pre-wrap;">having an “off” day please make sure to add what you </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">intend to do about it. What’s the plan of attack based on </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">what you observed. Because I am simply not there. I’ll be </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">glad to come in and help you troubleshoot but remember </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">sometimes I’m all out of ideas like you. I’ll honor that you </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">are trying your best if you do the same for us. This is also </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">my promise to you and parents listen to me here. If my </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Kiddo has been up since 3AM, I’ll fill you in. If my Kiddo </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">refuses, to change out of his Pajamas, I’ll send in a note</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">and a change of clothes explaining it was a rough morning</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">and maybe he might change once he gets there.</span><br />
<span style="font-family: Arial; white-space: pre-wrap;"> </span><span style="font-family: Arial; white-space: pre-wrap;">If Kiddo is scripting “Where is my freaking phone charger </span><span style="font-family: Arial; white-space: pre-wrap;">Eileen? I don’t know Rich. I’m not your mother.”, I’ll let you</span><span style="font-family: Arial; white-space: pre-wrap;"> know my husband and I aren’t always polite to each other </span><span style="font-family: Arial; white-space: pre-wrap;">before the coffee has kicked in. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Just ask me what you want to know. I’m an open book. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Money. Now this is something I </span><span style="font-family: Arial; white-space: pre-wrap;">didn’t get at all before I had a kid. I mean, I worked in </span><span style="font-family: Arial; white-space: pre-wrap;">school, so I wasn’t exactly rolling around in a pile a cash </span><span style="font-family: Arial; white-space: pre-wrap;">like Scrooge McDuck. However, I didn’t realize that down </span><span style="font-family: Arial; white-space: pre-wrap;">the road I would be forced to make medical and </span><span style="font-family: Arial; white-space: pre-wrap;">therapeutic choices regarding my child based on whether </span><span style="font-family: Arial; white-space: pre-wrap;">we could afford it or not. Every year I get to have the </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">same conversation with </span><span style="font-family: Arial; white-space: pre-wrap;">my health insurance plan after my son’s “allowed” 30 visits </span><span style="font-family: Arial; white-space: pre-wrap;">with a speech therapist. “Do you want to continue </span><span style="font-family: Arial; white-space: pre-wrap;">services?” “Well let’s see. My son is still Autistic and I’d like </span><span style="font-family: Arial; white-space: pre-wrap;"> him to be able to communicate his needs, so YEAH!”</span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Like seriously, can you imagine? “Hey Son, we’re on </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">visit 28 so if you could just learn how to speak that would </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">be great? Okay? No pressure! Thanks!” </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I’ve even had year where we had to pick between OT and </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">speech. Even still, I consider us very lucky as we just </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">have the one kid. Imagine a family with a couple of kids </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">and a couple of diagnoses. I can’t even fathom what they </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">must have to do to make it work. So if you see us hesitate </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">when you recommend more therapy or some sort of item </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">to buy to help at home, there’s a reason for it. We are </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">broke. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But to the parents I must say, whatever it is they are </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">suggesting, I bet you can MacGyver it. Come on Parents,</span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-family: Arial; white-space: pre-wrap;">we’ve made something out of nothing a lot of times. I bet if</span></div>
<span style="font-family: Arial; white-space: pre-wrap;">you collaborated with the team at school, you all could come up</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">with a solution that would not only you could afford but could work! </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are also tired. </span></div>
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<span style="font-family: Arial; white-space: pre-wrap;">I am so sorry to those former families of mine I didn’t </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">know that by the time you got to me, you were already </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">worn out from autism. My twenty something fresh from </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">college, ready to set the world on fire attitude must have </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">either annoyed you or gave you hope. I hope it was the </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">latter. Even if it didn’t, maybe you went home later and had </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">a laugh over my inexperience or possibly wondered if I still </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">got carded when buying a drink at a bar. I had the best </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">intentions even they didn’t always work and as a parent I </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">have to remember that you do as well. I also operate on a </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">level of exhausted that can’t be measured by modern </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">methods of science and math. Our kids DO. NOT. SLEEP. </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Let me put it to you this way, if Kiddo sleeps past 5AM, my </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">first thought is “Is he still breathing?” followed by “Is he still </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">in the house?” So yeah, if I didn’t cheer your suggestions </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">of a sticker chart as groundbreaking, don’t take it </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">personally. I may zone out once I here “token reward </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">system” being mentioned. This seems to be the “go to” for </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">any and all issues and once you see it not work for your </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">kid, you really don’t want to hear about it again. Token </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Reward System becomes like that bad for you boyfriend </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">you know you shouldn’t date. It sounds good in theory but </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">you know he’s just going to break your heart again. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My kid is 15. You know how many of these we’ve tried? </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">The stickers could wrap around the world twice by now. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I know I am also very sorry that I gave looks of pretentious </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">pity. Those families needed my empathy, not my sympathy.</span><br />
<span style="font-family: Arial; white-space: pre-wrap;">I can’t stress the importance of just listening and </span><span style="font-family: Arial; white-space: pre-wrap;">acknowledging what it is we deal with daily. Autism doesn’t </span><span style="font-family: Arial; white-space: pre-wrap;">just affect the one diagnosed with it. It encompasses the </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">whole entire household. An autistic adult self advocate </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">once said to me “You have autism by proxy.” I can’t think </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">of a better way to describe that. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">That being said if there are two big things you can do for us is the following. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">If you have to call us daily to come get our kids due to </span><span style="white-space: pre-wrap;">behavior then let’s just put the cards out on the table from the start that this placement is not the right one for our kids. I know from our own personal experiences, once I’m called to come get him, you are no longer the one in charge of that appointment or that class anymore. My son’s former school did this move and boy did it teach him well how to get out of school whenever he wanted. Behavior is communication and in this case my son was letting us know by loudly yelling and throwing of furniture that the environment was not the right one. That’s when it’s time to break up with us. We may be mad at you for a while but we’ll realize later on it was for the best. I think it’s extremely important to be upfront and honest if you cannot give the child the supports that they need. Save us the time and heartache BUT Help us find the next placement. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Likewise, our kids grow up. My son is currently 15 years old and adulthood is rapidly approaching. Now what? I see folks mentioning buzzwords like “services” but what are they? If you are a pediatric therapist, do you know of professionals to refer your clients out to when they become of age 18? Start collecting this information now because we need it! </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We both need to acknowledge the other is human. That </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">there are days when we both “phone it in.” There will be </span><br />
<span style="font-family: Arial; white-space: pre-wrap;"> “off” days for a variety of reasons. (Illness, relationship </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">stress, stayed up too late the night before because of a </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Netlfix binge. New episodes of Orange Is The New Black? </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">Don’t mind if I do!) It’s okay. We are in each other’s lives </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">because we love that kid. I know your students/clients are </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">“your kids”. They were mine when I did that job too. Even </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">when I punched out for the day, I was still thinking about them. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We also need to acknowledge you</span><span style="background-color: white; color: #222222; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> are speaking another </span></div>
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">language and one most parents do not understand. I didn’t </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">realize how much so till my husband was sitting in on some </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">of these meetings. I knew what you all were saying but he </span><br />
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<span style="background-color: white; color: #222222; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">had a giant “WTF” in his face. </span></div>
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<span style="background-color: white; color: #222222; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And maybe it’s because it’s at your job and there are more </span></div>
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">of you that are in the know than parents in the not, but it </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">can really make our parental head’s spin. Remember how </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">I said earlier how freaking tired we are and how our kids </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">don’t sleep. Rattling off terms like like ABA, FBA, BIP, </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">FAPE and what seems to be a large serving of Alphabet </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">soup without explanation only puts up a dividing wall </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">between two parts of the team. If you explain these things </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">to us, I’ll be happy to supply you with a list of known </span><br />
<span style="background-color: white; color: #222222; font-family: Arial; white-space: pre-wrap;">behaviors and translations of my Kiddo’s verbal stims. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> We both need to remember we are on the same team. </span></div>
<span style="font-family: Arial; white-space: pre-wrap;"> We both need to remember that neither one of us in the</span><br />
<span style="font-family: Arial; white-space: pre-wrap;"> enemy. Seriously parents. Let’s remember that. Would </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">you willingly send your kids to the enemy everyday? Of </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">course not. So let’s chill that “Eye of the Tiger” getting </span><br />
<span style="font-family: Arial; white-space: pre-wrap;">ready for a fight at the IEP thing. It needs to stop. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> We all need to remember to take a deep breath, try again, </span></div>
<span style="font-family: Arial; white-space: pre-wrap;">and when all else fails, order another side of fries to share. </span><br />
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And then they were super sweet and gave me this lovely plant that the students put together in one of their vocational programs and gave everyone a french fry stress ball! </div>
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<br /><br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com1tag:blogger.com,1999:blog-2644538309673050572.post-44531901140671272912019-03-07T18:25:00.000-05:002019-03-07T18:30:11.268-05:00Potty Training and Autism <span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">Fries, we need to talk some shit. Full warning, if you are a parent of a really little one this is going to be some shit you might not want to hear. We need to talk about the first big milestone that your kid with autism is going to miss. </span><br />
<span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><br /></span>
<span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">Nope, not the talking one. Not the pointing at stuff one. Not the eye contact one. We're talking about a pretty huge one that seems to send parents of three years olds off the mother loving deep end. </span><br />
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<span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">POTTY TRAINING (cue the dramatic music) </span><br />
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<span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">On average I get at least five emails a week that start with "My kid is three and still not potty trained and seems to have no interest and they have school and what do I do?????" </span><br />
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<span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">And then I dash their hopes and dreams when I reply "They aren't ready.". Which, believe me you, I get no joy out of doing. I totally get it. Maybe they had other kids before this one and they were just like "YAY!, THREE! No more diapers! Hot Damn!" or maybe they are still consulting all those neurotypical sources and they are all saying "This is the age." but again, autism. It's just not going to happen that easily. </span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">Much of the disbelief I see with these emails is their insistence "But you don't understand. They are going to school.". I sent my Kiddo to school at three too. Guess what? He wasn't potty trained. Not in the slightest and it was totally okay. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">Here's why it will be for you Fries too. Your child will most likely be attending a special education program. This ain't their first rodeo. Your child will not be the only one sitting there not fully potty trained. There's a reason they ask for an extra set of clothes. They know accidents can and will happen. So while you are packing those extra pants and socks (Don't forget the socks. People often forget the socks.) you can add a pack or two of wipes and diapers/pull ups. They expect it. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">And don't you dare feel bad about it. At. ALL. Listen, my mom was a preschool teacher for typical kids. She dealt with her fair share of accidents too. It just happens. No teacher goes into their field for the money and they certainly don't go into thinking it won't be messy. Have you seen children in general? They're disgusting. I mean, I love them but the little feckers are gross. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">Here's what you can do. Your special needs child will start school with an IEP. Guess what you can get written into it? Yep, potty training! In order for potty training to be successful, we all know it needs to be consistent across the board. It's best that both school and home are doing the same exact agreed upon thing. So sit down with the teacher and hammer out a plan and agreed upon rewards and such. Keep each other in the know of how things are going and revamp as needed. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">And I hate to say it but if your kid is anything like mine, expect this to take a long time. Yeah, I'm not going to lie. The older they get, the more complicated this topic becomes. They start growing out of diapers but then you can switch to those training Pull Ups. When they grow out of those, there are still "Overnights" for older kids that I think go up to 120 pounds give or take. If you need to, there are "adult" diapers because this is part of life my Fry friends. These things are available and thank god that they are but don't even feel bad that your kid needs them. This is just the life you have and you make the best of it. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">Despite what you might think, kids don't have very much control over their own lives. They strike back with the three things that they can control. 1)Sleeping. 2)Eating. and 3) Pooping. That's what they have and sweet baby Jesus in footie pajamas, they don't let you forget it. Now let's add "Autism" to this equation. Limited diets are going to affect their bathroom habits. Communication issues are going to make things trickier. Even sleep becomes a nasty villain in all this. Trying to get your kid to both sleep through the night AND not wet the bed. What's that first tip you probably read. "Wake them up and make them go to the bathroom." Yeah, wake the finally sleeping child that took two or more hours to wind down up? Are you insane? Do you have a death wish? Unless my house is on fire, I'm not waking my Kiddo up and even then I would probably ask the fire and rescue crew to work quietly while dousing the flames on my house. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">Finally, potty training isn't just a single goal to achieve. It's, pardon the pun, a crap ton. First order of business is the peeing but the pooping? Mother of mercy, it's a process. Plus we have teaching them to wipe and washing their hands to boot and this all the stuff we are just trying to get them to do at home. Try taking your kid to the bathroom to their first "away" toilet. There are a lot of enemies there. Automatic flushing toilets and hand dryers. Teaching young boys that if they use a urinal that they have to 1) Aim 2) Not pull their pants down to their ankles in public. </span></span><span style="background-color: white; color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;">Cause let me tell you Fries, a little boy butt, adorable. A hairy teenage butt, not so much so. Teaching girls to handle the locking and unlocking the stalls. It's a lot!</span><br />
<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">And if you are the mother to a son like me, you get the added worry of "Should I still take him in with me or send him in on his own? But if I do send him in on his own, do I have enough time to go myself and be out in time to meet him?" I've probably given myself several UTI's on the amount of holding it that I do because not all the factors are safe based on where we might be. Yeah, those family bathrooms/gender neutral restrooms are a thing we all very much need. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">I can't stress this enough. We get very hung up on their milestones but really, this is our milestone we're fixating on. We want to drop the diaper bag. We want to stop washing out (or throwing out. Admit it. You have.) underwear. You want your kid to have this because yes, it does make parenting a ton easier. The first thing you have to accept though is it's not probably not going to happen at three and it's not going to be quick. </span></span><br />
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<span style="color: #202124; font-family: "roboto" , "robotodraft" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;">So deep breaths! Push the water and juice at them. Set the timer. Feed them some salty snacks (Fries are perfect.) so they drink more water and keep trying because that is literally all you can do. They are trying their best and so are you. </span></span><br />
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Kiddo, age 4. He may have missed a critical step here. So close. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com3tag:blogger.com,1999:blog-2644538309673050572.post-561257410823462082019-02-26T20:48:00.000-05:002019-02-26T20:48:35.923-05:00The Three Month Rule. Today I was interviewed by a graduate student who was doing research on autism, parenting, and all that jazz. One of his last questions was "What would you tell a new to autism family or just any family that maybe just needed some inspiration?"<br />
<br />
So I told him the secret of my sanity. (No, it's not wine.) It's wait three months.<br />
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Three, just like Schoolhouse rock taught us, is the magic number. The months part? Well that's just good dating advice I learned in college. An on campus therapist there was once sympathetically listening to me whinge about a guy that I was SO head over heels for and how I just couldn't imagine myself with anyone else. She had spent a better part of an hour listening to me list some not so hot qualities about this guy. (What can I say? I was 20 and stupid.)<br />
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She looked at me, smiled and said "Wait three months before you do anything serious with this guy. If he's a stand up guy, he'll still be around and if he's not, your life will still have a chance to be different in ways you don't know yet."<br />
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Yeah, guess who was GONE after a month? Guess who was super glad she didn't waste her time or energy chasing after that guy? Guess who also found herself looking at the calendar one day three months later and realized "Damn, she was right. Things can be so radically different just in three months."<br />
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This applies to parenting and all things Autism because in three months everything can be totally and completely different. This can be both good and bad but it's a reminder that most importantly, nothing is ever stuck in that one spot. You can choose to change it. You can choose to move it along or if you want, just stay stuck in it. (I don't suggest that last one. It really blows and just sucks the life out of you.)<br />
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For example, Kiddo is loud. Like makes a death metal concert look kind of mellow loud. With this comes different stim noises and or phrases that he just latches on and repeats. In some ways, you sort of get use to it. They become a bit of white noise in the background to you but every once and a while, say every THREE MONTHS, one will be like having an ice pick jammed in your ear. For whatever reason, it will be the perfect combination of awful but as my husband often says to me. "Don't worry Hon. In a few weeks, he'll pick an even more annoying sound to make." And you know what? He's right! (Hey, look at that Daddy Fry. I said you were right. You might want to print this blog post out and frame it.)<br />
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But my point is, eventually, it always changes. For a condition where people aren't suppose to be digging change, my Kiddo does it a lot. He just does it at his own pace and I'll just have to use my ear plugs and white knuckle right through it.<br />
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This can go the other way too. Even when things are kind of good, guess who is waiting for it to all go south? This gal right here because you know why? It always does. Good gravy, I will give autism one thing. It sure ain't boring. We've now added teenage hormones to this party and let me tell ya, you cannot tell me boys don't get PMS because OMG and WTF!?!? But I digress, I just have to go with the flow because the temp agency refuses to take my phone calls anymore requesting a substitute mom.<br />
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Yes, three months can be a long time to wait something out but think about how quick it can go when the going is good. So, I'll just keep giving myself and the Kiddo those three months because right now it's all we've got.<br />
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-53553628622464490302018-12-30T09:09:00.000-05:002018-12-30T09:09:58.934-05:00The Show Must Go On. <i><b>"The Show Must Go On. </b></i><br />
<i><b>The Show Must Go On. </b></i><br />
<i><b>Inside my heart is breaking</b></i><br />
<i><b>My makeup may be flaking</b></i><br />
<i><b>But my smile, still stays on." </b></i><br />
<i><b>Queen</b></i><br />
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Kiddo had his IEP the other day. I'll get right to the point. I didn't want to go. I didn't want to deal with it. I didn't want to prep for it. I didn't want to hear about goals or benchmarks. It's not that I don't care, it's just that I am so tired.<br />
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Couple with this with a yearly review from the state agency, "Perform Care". Which if you are a resident in New Jersey, you will speak to quite a lot under the guise of getting help and services for your kid but only if you are willing to be a giant pain the ass to follow through to get it. "Perform Care. We barely care or perform." might as well be it's slogan. I spend an hour on the phone with them to once again answer a slew of questions of what he can't do milestone wise and what damage he can do behavior wise. I listen to an employee tell me all the stuff they can provide if only he was "more severe" or "less severe". It seems if your child is middle of the road autistic like mine is, don't hold your breath that you'll get actually help.<br />
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Gee Kiddo, it seems you have the wrong kind of autism. Who knew that would be a thing?<br />
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It's not just a physical tired that I am talking about here. I haven't had a full night of sleep since the doctor said "It's a boy!" at the Kiddo's birth. All parents walk around in a bit of fog, especially those of us in #TeamQuirky. It's not fun but your body gets use to it.<br />
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What I am talking about and trying to come to terms with is how emotionally tired I am of all this. I'll say it. Autism is tough task master and it often makes me it's bitch. Kiddo is fourteen. He's been in school since the day after he turned three. So we're talking a decade's worth of IEPs and special meetings with the team. Plus the year and half before school with Early Intervention and all the service plan review business. At this rate we could wall paper our entire house ten times over with all the paperwork involved.<br />
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And I'm just done and the worst part is I know I can't be. There is no end to this. Not till the day I die and even that I can't really do because, well, autism. The show must go on. There is no understudy.<br />
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Also, to be perfectly honest, I am hitting a wall with Autism in general. Not just my Kiddo's special brand of it. I know this is an issue of my own making. Becoming a blogger that writes about one subject was eventually going to bite me in the arse. I just had no idea how utterly steeped in autism I would become. Seriously, I cannot escape the stuff. The majority of my life even outside of my Kiddo is just autism related stuff. Other families that I know, teachers and therapists that I have become friends with, sites that I follow, podcasts that I listen to, writers that I read, stuff on social media just has a crap ton of autism and puzzle pieces slapped all over it.<br />
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I have observed a common theme for most of what I see too. Struggle. There is just so much hustling to make things work for our rapidly growing kids. With this IEP in particular, the theme of rapidly growing was forefront. Job training, independent life skills, improving social skills, and working on coping skills are all being thrown at us. I mean, we're ready. I think. This is what my professional background is in. I've been playing the part of "job coach" long before the Kiddo. I know my lines.<br />
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But can I find it in me to sell the scene? Because I am struggling to get to that part of me that makes me believe that we can do this. That he can do this. That I can be both his duet partner or his background chorus girl. Whatever he needs, I will try my best but I am so damn tired and so scared because the older he gets, the more I see how the world just seems to forget our kids grow up.<br />
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Because every day lately has felt like I am in a play that never ends. Even as I was getting dressed to go into the school because the dress code is not "pajama casual", it was really hard for me. I caught myself thinking "Why can't we just be shitty parents and blow this off?" Of course, as soon as I thought it I realized how stupid it was. Blowing this off won't make it go away. The audience have bought their tickets. The curtain is going up. "Places" will be called and you can bet your arse I will be in mine. (Back to the wall, middle of the table, face to the door to greet any sudden cameo appearances like special guest stars "Speech or Occupational Therapist")<br />
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But good gravy, this was the year I struggled to pull off this performance of "Involved and Active Parent". It kind of freaks me out that I felt this way to but I am hoping that by acknowledging these feelings I can get over the hump of "meh" I have been feeling about autism as of late.<br />
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After all, there is still more story to tell. On with the show!<br />
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<b><i>"I'll top the bill</i></b><br />
<b><i>I'll overkill </i></b><br />
<b><i>I have to find the will to carry on.</i></b><br />
<b><i>On with the show. </i></b><br />
<b><i>The Show Must Go On." </i></b><br />
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Thanks Kiddo. I've been feeling a bit Autism with a side of "meh" lately. This helped. </div>
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com22tag:blogger.com,1999:blog-2644538309673050572.post-91633898832455653942018-11-02T20:45:00.000-04:002018-11-02T20:45:51.198-04:00The Three TypesI think we can all agree that unsolicited advice usually stinks. I think we can also agree that unsolicited advice often comes from people that don't have a flipping clue.<br />
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And sometimes it's from people who you thought would have your back from the get go. Family.<br />
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Yep, we're going there. Let's talk about family and the ones who seem to make the effort it to judge the crap out of your parenting, your kid, and your whole situation.<br />
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It follows a simple formula. Kid starts diagnosis process, advice and opinions coming flying at you. There seems to be a few certain sub groups of these less than helpful folks.<br />
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1) <b>The Deniers</b>. There's nothing wrong with your kid. Your kid was an early walker, everyone knows that means a late talker. Cousin Jimmy didn't talk till he was five and he's fine. Mind you Cousin Jimmy is living in his mom's basement but he's got a job now. Stop fussing! You talk for them too much. Back off your kid. You hover too much!<br />
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2) <b>The Accusers.</b> Well you didn't follow a micro biotic all vegan. no soy, no gluten, no dairy diet while you were pregnant. You bought that house that's too close to the cell phone towers. You used a microwave to heat up leftovers! You didn't follow a delayed vaccine schedule? You didn't breastfeed or breastfeed long enough. It's all "You didn't. You. You YOU!!! Look what YOU did!"<br />
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3) <b>The Fixers.</b> "Oh, you just informed me of your kid's autism diagnosis? Allow me to send you every article or meme that I have ever come across on the subject online. Anytime I see you, I will never ask you about any other part of your life other than autism. I will be puzzled that you didn't follow the advice of the twenty different crack pot articles that I sent you. I was HELPING! Let me fix it!!!!! The diet! What about the diet?? I sent you that email last week. Why aren't you doing the diet???"<br />
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The fact that the majority of these folks that do these behaviors are related to you tends to make this a tad more hurtful. I can bet you dollars to donuts you have all three of those types in your family. So even if you go to complain about a "Denier" to another family member, there's a good chance you might be talking to either an "Accuser" or a "Fixer". You never get a freaking break!<br />
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I think this is why a lot of autism families start creating their own families. I call it the "Autism Mom Mafia". Seriously, I could walk into a room full of moms with autistic kids and say "Someone is giving my child a hard time." and every single one of them would take off their earrings, pull out bats and brass knuckles and say "Where are they?". No questions asked. That's freaking loyalty, Fries. Cause they just get it. If my son is struggling in school with something, am I am going to call the family member that likes to remind me that I didn't breastfeed my kid and this is all my fault or the mom who knows to get poop stains out of anything. I have moms I can and have texted at 5 AM because I know they are up already for the day with their kid and they'll immediately reply back "Oh, you got to sleep in today. Lucky!"<br />
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I'm not saying go blow off your entire family. Far from it. You can't change them but you can change how you react to them. What you choose to share with them. What you are willing to give them and most importantly, you know know how to lay down some boundaries like a mofo. Sadly, this is a process and doesn't happen overnight but you can make progress towards a better relationship. Heck, you can do that. You work on goals with your kids all the time. Who's to say that Grandpa Denier or Aunt Accuser can't benefit from a nice behavior intervention plan?<br />
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So what do you do with a "Denier"? Well, keep living. Keep doing your thing. Eventually they will either sort of catch up or fall behind. It's sad if they do. That they couldn't be what you needed them to be or what you thought they were but let them kick rocks. You have enough going on. You want to carry them with you to? Didn't think so. It should be noted that this group is often an older generation and one that is completely in the dark about all things special needs. I give them a little slack. Why? Simply because they come from a time where "those kids" went away. Sent to live in group homes and institutions. They didn't grow up with these folks around. So yeah, it's a bit of a mystery to them. However, once you start dropping knowledge of them and they still don't come around? Boy, BYE!<br />
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An "Accuser"? Redirection is your best friend! They want to remind you of the time you let your kid eat Red Dye? You remind them of the time their kid ate a french fry off their minivan floor and still lived to tell the tale. I mean, if these folks are family there is bound to be even better dirt on them that you can remind them about. "Oh, you want to talk about why I let my kid co sleep? How about the time in high school you told your mom you were staying the night at my house when you were really co sleeping with your boyfriend in the back of his van after a Metallica concert?"<br />
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Now nothing fixes a "Fixer" like some good old planned ignoring. You want to tag me in every meme on Facebook with a puzzle piece on it? "Oh you did? I didn't see it. Facebook algorithm strikes again!" You want to email me every article you see about Jenny McCarthy and diets? SPAM FOLDER,BABY!!! You want to tell me at every family gathering about the YouTube clip of the latest cure du jour? I will give you resting bitch face and say "That's nice." and change the subject.<br />
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Moral of the story folks? You have autistic problems and they can only give you neurotypical solutions because that's all they know. Yeah, it can be a pain but it's just what it is. You can make the choice on how you handle it though. Personally, I am going with humor and a side of fries.<br />
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Kiddo will always be my "Ride or Die" best bud.</div>
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com5tag:blogger.com,1999:blog-2644538309673050572.post-65771641989606781882018-09-18T09:00:00.001-04:002018-10-03T20:22:16.977-04:00Autism around the clock. Fourteen years living with this Kiddo and he's still finding ways to shock the crap out of us.<br />
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Our latest surprise. Kiddo knows what time it is but not by looking at a watch or the clock on his iPad. It's because he keeps a running clock in his mind. Seriously, we figured out that the Kiddo is forever counting seconds, minutes, and hours in his head. Non stop.<br />
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My husband was the first to notice this. He would be outside working on the lawn or whatnot and Kiddo would come outside. He'd ask "Hey, do you know what time it is?" and the Kiddo would always know. The first few times we thought it was he was seeing a clock on his way out of the patio door but nope. He would wait a bit and then ask him. Sure enough, he would be mid jump on the trampoline or swinging in the hammock and he would just rattle off the time.<br />
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And he would be right.<br />
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I honestly couldn't believe it until I did checked it myself. I was brushing my hair and he was just sort of stimmy/flappy in the bathroom door frame scripting. Not a clock in sight. My phone was in my pocket. I didn't even have on a watch. I asked. He answered and I looked at my phone and he was right.<br />
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And we're not talking like within ten minutes or so. He is ON. THE. NOSE. The other night my husband asked him and he changed his answer mid sentence. Why? Because it was going from 6:59 to 7:00 PM. Hubby pulled out his phone to check and watched the clock change from 6:59 to 7:00.<br />
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HUH???!?!?!?!?!? How the Hell does he do this??? He's always had a thing for numbers. It's why he's always loved Thomas the Tank Engine trains and their assigned numbers. He can remember every hotel room we've ever stayed in and the year. He can rattled off at the movie theater which flicks we've seen in each theater. He loves math at school. So I can't say that I'm altogether shocked per say but at the same time I'm just sitting here stunned all the same.<br />
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And you know what I keep saying to my husband? "HOW DO WE MAKE THIS A MARKETABLE SKILL?????" Because while it's kind of cool that he can do this, it's also another example of the quirks of autism. Yeah, great that he'll never be late because he'll always know the time. We also now know why he's often slow to respond to questions. It's not just processing what is being said to him. He's doing that WHILE being a walking clock.<br />
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There's no explaining or telling him "Hey Kiddo. No need to keep a constant clock running in your brain. We're good." He NEEDS to do this. This is just how his brain works. I can't get him to change his brain anymore than he could get me to change mine.<br />
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But like I was saying before, it's just one of those things he does. Can't tie his shoes but he can keep a running clock going in his mind. I'm not sure what this type of skill can do in the long term or will just be another one of those #TeamQuirky things of his.<br />
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If I have learned two things from this it's 1) He will never stop surprising me. 2) It's also always time for another side of fries.<br />
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Now we know why he likes to sleep with a clock. Here I was thinking he just wanted to be like Flavor Flav. YEAHHHHH BOYYYYYY! </div>
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-54187724006279294182018-09-04T20:24:00.000-04:002018-09-04T20:24:48.300-04:00Inclusion for all! (But only for a little while.) <div style="background-color: white; color: #454545; font-stretch: normal; line-height: normal;">
<span style="font-family: inherit;">Inclusion. The first twelve years of the Kiddo's education was in the school district. He went to the regular school just like all the other kids in our town. Now granted he would spend a majority of his day in a self contained classroom filed with other kids with special needs. He was also in and out of that class to spend time with his fellow neurotypical peers. His elementary school was BIG on inclusion and we were pretty happy about that. The kids got to know him and all his quirks. They loved that he loved to sing and would do so with him. It was nice to be out running errands and some random kid would run up to say "Hello" to him. I found it heartwarming and it made me think "Yeah, this next generation is going to be the one that gets it. They are just going to be so use to all things Autism." </span><br />
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<span style="font-family: ".sfuitext";">So needless to say, when we realized he had to leave the school district for a different educational placement, I was really worried about the inclusion factor. I mean, in some ways it's great that his current is school is nothing but autistic kids. No one cares if some kid is flapping because they might be too busy doing their own stim. In a lot of ways, Kiddo has become more interested in the other students for the first time. Maybe it's because he can really relate to them in a way he couldn't before. </span></span><br />
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<span style="font-family: inherit;">The fact remains that unless we see one of his teenage cousins, he isn't hanging out or spending any time with neurotypical peers. At all. I feel really worried about that but I also can't help but feel it's a bit "Out of sight, <span style="font-family: ".sfuitext";"> out of mind." We left the in district schools and what I feared would happen, happened. We are totally cut off from that whole community now. I wonder if the kids forgot about him or if the parents forgot about me. I get it. Their kids and lives get busy but they are busy “over there” in Neurotypical Land. Since we don’t travel those parts anymore, are we just a memory in yearbook or a picture that gets tagged on Facebook. “Oh, remember Kiddo? Remember that crazy mom of his? She was fun to sit next to at the PTA meetings." </span></span><br />
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What happens when there are no more chances for inclusion with your peer group? I'm hear to tell you. The older you kid gets with autism, the less "stuff" will be out there for your rapidly growing kid. Not gonna lie, that kind of freaking sucks. There's just very little that both neurotypical and autistic teens can join together. There's a very distinct line. Unless a lot of prompting and organizing goes on in the background by adults, these typical teens are going to be busy doing what typical teens do.</span><br />
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<span style="font-family: inherit;">Sure, you see the odd "feel good" story about the basketball coach that put the autistic teen in for the last ten minutes of a game and everyone cheers when the kid makes a basket. It wouldn't be prom season without some viral photo or video of a typical teen taking one of our quirky kids as their date. I'm not knocking on either of these things. Inclusion is inclusion and I'm a inclusion junkie. I'll take it where I can get it. I'm just asking, can't their be more? Of course, I can't figure out how to make that happen. I also don't know how much I can push that whole thing with my Kiddo. He does has his limits with those wacky neurotypicals.</span><br />
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<span style="font-family: inherit;">This shouldn't be hard to do but for some reason, it is. Life just gets so busy for every family. Even our one "go to" NT family isn't one we get to see anymore. Other than an occasional "like" on something one of us posts on Facebook, I don't hear from them. How many times can I call, text, or email for a get together and hear silence on their end? Okay, I get it. It was cute when the Kiddo was small. Now that he's huge, not so much so.</span><br />
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<span style="font-family: inherit;">I guess what I am trying to say is what's the point of inclusion if you only do it for a limited amount of time? How can we go about fixing this? I'm almost at that point where I don't want my Kiddo to have only a viral moment here or there. He should have access to those people all the time. They deserve to access to my Kiddo all the time. He's freaking awesome.</span><br />
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<span style="font-family: inherit;">Of course, I might be bias. ;-)</span><br />
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com3tag:blogger.com,1999:blog-2644538309673050572.post-71202843673897717162018-08-12T19:48:00.001-04:002018-08-13T07:40:37.251-04:00#EndAutismInfightingNow<div class="js-tweet-text-container" style="background-color: white; color: #14171a; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;">
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<i>"Why is everyone screaming about Jenny McCarthy and what's this #EndAutismNow hashtag thingie and oh for feck's sake!"</i> said the tired middle aged mom an autistic teen scrolling through Twitter one morning. </div>
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And we are at it all again. If there is one thing I think the entire autism community can agree on is we fight with each other. A LOT. Like we could medal in fighting. It seems Jenny McCarthy has a book coming out or is helping another autism writer out or something. It was hard to find all the details out when all I could find were comments and articles of people wanting her head on a platter. Anywho, she's uber involved and even recorded a "call to action" video about the book's release and it was a clusterfuck. Mainly due to the hashtag she teamed with it, #EndAutismNow. </div>
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Jenny, oh Jenny. Girl. GIRL. Now I get your kid is like sixteen so you have been doing this autism thing for a while now but Honey, have you not noticed by now that attitudes and feelings about and around autism have changed? You're on social media. You can't tell me you haven't noticed. I know I've seen it and I know just by seeing things and reading about them, it's changed a lot of my views. </div>
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Okay let's start with the nitty gritty as to why this hashtag kind of sucks. (There's just no way I can say this nicely. Sorry, I'm not the fluffy puffy autism mom that slaps a puzzle piece on anything that doesn't move.) Here are my exact tweets on what I had to say about it below. (Are you following me on there? @FrenchFryInc) </div>
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<b>"Here's the real issue w/ the #EndAutismNow thing. There's the HUGE population of autistic people that isn't be supported. That isn't being employed. That isn't finding safe and affordable medical care/housing.</b></div>
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<b>Then you have family/caregivers that also need support/resources/ for lack of better words, HELP. They're being ignored too by this dumb hashtag. they're also being ordered to be some new book's free PR team. Like they didn't have enough to do. </b><i>(This in reference too her asking people to approach bookstores to hold events for the sale of said book for her.) </i></div>
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<b>So two sides are at each other's throats because no one can sit down and actually figure out a way to be supportive and empathize. Folks, I'm here to tell you, you can do BOTH! Honest!</b></div>
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<b>But if you are making me pick a side, sorry Jenny and Crew, the #EndAutismNow hashtag is insulting. To autistics. To the ones that love them. The ones that actively support each other. Pro tip. Hire a few autistic people to consult your social media." </b></div>
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Now before the rest of you all call for my head to join Jenny's on that platter, I'm not hating on her but I'm really done with this "OOooooooo! Autism is a big scary monster." fear mongering shit. Because I'm not just reading that and thinking in general terms. I think of my Kiddo. My Kiddo is the big problem that needs to be ended? Really? </div>
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And before you all go "BUT! BUT!! BUT!!! Prevention for future families from having to deal with this!!", yeah, I hear you. I get it. This autism stuff is challenging. I'm not denying that. (See, empathy to both sides! So easy to do!) However, half the challenging stuff gets MORE challenging when the current autistic population keeps being ignored. As a community, we still sadly lack the resources and support that is so desperately needed for a rapidly growing population. My Kiddo needs a job, not to be demonized by the general public when they see thinking like this. That he is a burden to be had. </div>
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What makes this all the more exhausting? It's most gas on the fire of fighting. Sometimes I chuckle when I see folks saying things like "Oh the comment sections on articles about politics are so nasty." Oh Bitch, you clearly ain't seen any given internet thread during Autism Awareness Month. We can't even all agree on a damn awareness color. (I still suggest we forgo colors in favor of things like fringe. One, it's cool on any clothing. Two, sensory input for the win!) </div>
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Jenny, your son is sixteen. Here's an idea. Put him on your social media team. Honestly. You're a middle aged lady like me. You need some young blood on that side of things. I sometimes run things social media wise past my teenage niece and she explains things to her old AF aunt. </div>
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Like can you imagine if you just shifted your platform to what needs to happen NOW as opposed to what hasn't happened or might not happen. We know there are people here now that could benefit and wouldn't that help us figure out what we need to do in the future when or if more come following? Isn't that more of a win/win here? </div>
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And the funny thing is, I'm typing this and knowing that as soon as I press "publish" on this piece, I am opening a Pandora's box of possible trolling from either or both sides on this. Pffft. Whatever. I have to get this off my chest. I'm tired of the infighting. I am tired of neither side showing any empathy or even trying to come up a solution of what could work. Maybe even just an acknowledgement of "Hey, yeah. We are both very different." Just stop the fear stuff. I'm so flipping tired of it. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com6tag:blogger.com,1999:blog-2644538309673050572.post-37951295350597473162018-08-02T18:25:00.000-04:002018-08-02T18:25:20.851-04:00There's no crying in baseball. If you have ever found yourself crying in your car, I've been there.<br />
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If you have ever found yourself crying in the shower, I've been there.<br />
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If you have ever found yourself crying as you load and unload the dishwasher, I've been there.<br />
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If you have ever found yourself crying and getting mad at yourself for crying again, I have been there.<br />
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There may be no crying in baseball but there sure is in Autism.<br />
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I guess Tom didn't get the memo. That's okay. He was busy riding on The Polar Express nightly. </div>
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We have hit our annual August Angst. ESY aka Extended School Year aka Summer School aka "Don't you dare call it camp or I will cut you" is winding down next week. We're staring down a long month off. Yes, I've been a member of Team Quirky long enough to know what I have to do but it's still a daunting task all the same. Sure, we'll have little schedules each day to follow and events and activities but it's not nearly the same as having that school routine. <br />
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And I swear each year it gets harder.<br />
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And I have to remind myself it's not so much that it's harder it's just a different set of issues that we have to get use to and once we do, it will be fine. "FINE!" she says as she weeps hiding in the laundry room into a mini bag of chocolate chip cookies that's she's inhaling. (Yes, I eat my feelings and my feelings are delicious!)<br />
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I mean, we do have some big plans in the middle of this. Our annual vacation. This will be trip number six to this resort because we're Autism Vets. We know what works so we stick with it! My husband and I also really like it there and enjoy tagging each other to take on Kiddo wrangling duty so they other can get a break. Like my hubby goes on hikes or to visit some dead President's home and I do something better like GET A MASSAGE AT THE SPA!<br />
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Kiddo's trip will be the following:<br />Get up and Mama Fry will remind him ten thousand times to be quiet because people are sleeping.<br />
Eat Breakfast.<br />
Outdoor pool.<br />
Lunch.<br />
Indoor pool.<br />
Dinner.<br />More pool followed by some pool.<br />
Bed.<br />
Remind us as he is falling asleep that he wants to go to the pool tomorrow.<br />
Repeat.<br />
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But I digress. That's a week we have a plan and part of me feels good knowing for a week we have stuff to do to keep him busy and engaged.<br />
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Except Autism comes on vacation too and while he's usually pretty good on vacations (I swear this kid lives for sleeping in hotels.) it has gone south now and then. So maybe I'm worrying for no reason but I'm also no dope and I'm not going to pretend there's no chance that will happen because puberty has moved into this house with a vengeance. It also brought it's pal Anxiety and let me tell ya something, I really wish that bitch would leave my Kiddo alone.<br />
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I don't know what's going on with myself lately but I'm starting to think I'm having teenage angst and anxiety, the sequel. Kind of surprised that the husband keeps coming home each night knowing what waits for him. An anxious Kiddo and wife combo. I must be a really good cook or something. <br />
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But I've been in this place before and I will surely be there again. I guess what I'm trying to say is "Yeah, stuff is a bit shit right now but I'm hanging." So if you find yourself thinking the same right now, know I am right there with you. <br />
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#TeamQuirky </div>
Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-30686490463453590172018-06-26T21:05:00.003-04:002018-06-26T21:05:39.578-04:00You can miss so much. I was tooling around on Twitter this morning (@FrenchFryInc) and this tweet caught my eye.<br />
<span style="font-size: large;"><i><br /></i></span>
<span style="font-size: large;"><i>"How do you help a friend whose child just got an Autism diagnosis? All I can do is speak about my personal experience and listen to her. Any advice?"</i></span><br />
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I was quick to point out to her that she pretty much answered her own question. Make sure the newbie mom knows your thoughts are just that, yours. Plus, listen to her. I think she knew those were both good ideas but also wanted to do extra.<br />
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Which is something I can totally get. Long before this blog and being "Mama Fry", I was pretty open on my social media that I had a kid with autism. So every now and then a former classmate of mine would message me with "Welp, we just got diagnosed and...yadda, yadda, yadda, autism, etc..." I found myself simultaneously wanting to hug them, high five them, pour them a drink and drop all the knowledge and information I had on them at once.<br />
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Because I had been there. I knew how scary and overwhelming it was. I knew that what it was like to have a love/hate relationship with Autism. I knew that playing Dr. Google was a REALLY. BAD. IDEA. I knew how to butter up a receptionist at a local doctor with a long waiting list to get your kid in just a little sooner to see them. I knew how it would both bring you to your knees again and again to read all those reports the "experts" wrote on your kid. I knew how it would lift you higher than a mountain to see your kid prove them wrong.<br />
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I knew that sometimes a good cocktail could be made with Kirkland Signature Vodka and some Crystal Light drink mix in a Lighting McQueen cup. I had developed a very unique skill set.<br />
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But if there was ONE single piece of wisdom that I could narrow it down to. One mantra to repeat for now and forever it would be this.<br />
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<b><span style="font-size: large;">Calm the Hell down or you are going to miss so much. </span></b><br />
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You will never get the do over you are craving. All of this will be gone in a flash. Suddenly you will be me and you will realize that you have missed so much. You don't get this back. Yes, some of this you wish you could have skipped all together. (Like the whole little to no sleeping thing. That can fuck right off.) But wishing he was little again and we could have at least tried some of the things I was so sure he could not do, I'd give anything to have that chance.<br />
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I see these newbs writing these gospel long descriptions of what their kid is doing or where they are at and I'm just like "Yeah but can't you just see them as 3?" Cause being a "threenager" is a very, very, real thing. No matter what the neurology. Let me tell you something, the real mark of the Beast isn't 666. It's muthatruckin' 3. Yeah, autism has behaviors and behavior is communication but sometimes your kid is just being their age. Just chill on this. Trust me on this one. Even though 3 can be evil, it can also be damn cute. Don't miss that. Before you know it you will have a great big old man child with hairy legs, as tall as you, and shoes bigger than your own. Enjoy each age, each year, even when they resemble Satan on a bender.<br />
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This isn't a Netflix series. You don't want to binge this stuff. Just enjoy each episode and side of fries.<br />
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com6tag:blogger.com,1999:blog-2644538309673050572.post-70359411090742484202018-05-21T20:19:00.000-04:002018-05-21T20:19:12.293-04:00Autism by proxy.Today I had my annual mammogram. A month later that I was suppose to because once again, even my boobs get to feel the effects of autism, anxiety, and meltdowns.<br />
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I was a good girl and made my appointment as usual. I don't mess around with missing the lady bits doctor. I could lose a limb and I would simply stick it back on with duct tape under the excuse "Well the Kiddo has OT later and my husband can't take off of work to take him." Killer cramps and hormones, I keep those bitches in check. Plus, it was a trip the gyno that first made me face the reality of my own mental health needs. You can read about that <a href="http://autismwithasideoffries.blogspot.com/2014/10/paper-gowns-and-prozac.html" target="_blank">here</a>.<br />
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But what happened? Kiddo left his mark on me. Literally. Several in fact. Three days before I was scheduled to go Kiddo had a horrible meltdown. There was no talking him off the ledge. No redirection I could give. It was one of those where I just knew "Well, this is what we're doing for the next hour or so." I was alone with him, so I got the brunt of it. My arms especially. Scratched and bruised so badly. He kept grabbing my arms with a force so strong. Eventually I wound up locking myself in the bathroom to get away from him because he was hurting me. I found myself calling my husband at his job and asked him to come home, which luckily he was able to do. In the time it took him to come home, we had a brand new hole on one of our walls and the Kiddo broke the door to the bathroom trying to kick it down to get to me.<br />
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What I did not know till much later that night as I was getting ready for bed was the number of marks he left on me. Some of which were clearly hand marks. You could see where his fingers gripped me. I was a walking bruise. It wasn't till the next day when I got my phone call reminder about my annual mammogram coming up when I realized "Oh Shit, someone is going to see all this!"<br />
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I could easily hide the damage with shirts but during a medical exam where you aren't weren't anything above the waist, yeah, that wasn't happening. How the heck could I explain it? It wasn't just one or two marks. It was a crap ton. It was the kind of bruising where you might ask a person "Where you in an accident?" or worse "Who did this to you?"<br />
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Now please tell me, how the Hell am I suppose to tell someone it was my child? Especially someone in the medical community. Let's also remember, Kiddo is my height. He's got man hands now. So these marks weren't small. I either tell them my kid did this and have to deal with all those questions and a possible phone call to child protective services. Or I say nothing and have them assume I was assaulted or maybe something terrible like my partner or spouse had beat me. <br />
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I found no other choice that I could make other than to call up and pretend to be sick and reschedule. I purposely made it a month from original. Plenty of time for my arms to heal but also hoping that I don't wind up having more added to them.<br />
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We got lucky. He hasn't had a meltdown since that day. My arms healed. I was able to go and get the tatas tested. No weird questions or looks. Just the usual chit chat with the tech about nothing special while we both pretend she's not shoving my boobs between to two cinder blocks.<br />
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It's one of those things where it just feels so surreal. I'm all about advocating for my Kiddo and autism but there are some things, where do I even start? How do you explain in a sentence or two that your child injured you and that's a totally normal thing for it to happen in your world? I'm not looking for sympathy about it. I just want to be able to share what happens in our lives because I'm really, really, fecking sick of not talking about certain things. People want the shiny rainbows of autism but it's not always something cute in a sound bite that you can share on social media and feel like you did something because you shared it.<br />
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I'm never going to be one of those people that tape their kid's meltdowns and puts it on the Internet under the guise of "awareness" but I'm sure as shit not going to keep quiet about them. Guess what? When he has a meltdown, we all do. One of my pals who's an autistic adult once told me "You get to be autistic by proxy." You know what? He's absolutely right. Here I am with injuries that I got during a meltdown that I don't even know how to begin explaining to someone outside of this world. Geez Kiddo, if you feel this cut off from the world with not being able to express yourself, it's no wonder how mixed up that makes you feel all the time.<br />
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So yeah, don't tell me my world isn't ruled by Autism because in my many years of experience this is just one more example of how it is.<br />
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Life with the Kiddo. Get on board or get left behind. </div>
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<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com11tag:blogger.com,1999:blog-2644538309673050572.post-81185311618438381622018-04-23T19:24:00.001-04:002018-04-23T19:24:04.425-04:00Who he is. <span style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;"><b><i>"When the sharpest words wanna cut me down</i></b></span><br />
<b><i><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">I'm gonna send a flood, gonna drown them out</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">I am brave, I am bruised</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">I am who I'm meant to be, this is me</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">Look out 'cause here I come</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">And I'm marching on to the beat I drum</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">I'm not scared to be seen</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">I make no apologies, this is me"</span></i></b><br />
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This is Me from the The Greatest Showman Soundtrack<br />
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Kiddo's school wanted him to wear this Autism Awareness fundraiser shirt last week. Everyone was suppose to "Light It Up Blue" and all that jazz. (Don't come for me folks who got a beef with that campaign. It wasn't my idea. I am merely reporting the facts for the context of this little piece, m'kay?)<br />
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Did I mention that Kiddo goes to a private school that is strictly for students with autism? So basically they wanted the kids to bring awareness to the fact that they all have autism. Which I guess, in a warm and fuzzy Kumbaya kind of way they could bond over. Or it would serve as a reminder to the staff that are all trained to work with autistic kids that these kids in the school strictly for students with autism have well, autism.<br />
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Okay, let's just admit this whole event is kind of strange but whatever. They're doing it. It's April. We're suppose to dial it up a ton with the Autism. Despite how this month often just leaves me befuddled, I dove right in.<br />
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I handed him the shirt in the morning and said "Okay bud. All the kids are wearing this today for Autism Awareness" and it struck me once again, does my kid even really understand that he has Autism?<br />
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It's no secret in this house. It never has been. We have talked about it quite openly but I still wasn't sure if he even knew what that meant. With his intellectual disability to boot, a serious conversations about neurology would not be as easy as our usual back and forth chats filled with our movie script quotes and tons of inside jokes that only we understand.<br />
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I said to him "You have autism. That's what makes you, well, you!"<br />
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And I got a reaction that pretty much can be summed up as "Whatever". In my head though I am thinking "Is this a big deal? Should I make it a big deal? Yeah, it is a big deal. If anything, for his safety I need him to be able to say "I have autism" if anyone asks him. He needs to know his identity!"<br />
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I said to him "Say it with me. I have autism!" and he repeats it. Kind of quietly. Kind of unsure of the word. I say it again and encourage him to say it again with a big old smile on my face. I want him to know this autism thing, this is a cool thing about him. I want him to own it. He says it louder. Still not as sure. The word, I can tell, still seems different to him. While we might have been using it all around him, he sure hasn't been. This might take some time getting use to a new word to use.<br />
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This is where I then think "Does he know what it means to have autism?" More importantly, "Does he even care?" Life with the Kiddo is pretty clear for a lot of things. If he likes something, he LOVES IT! If he doesn't care, let's just say his resting bitch face is pretty stellar. (Yes, he takes after me. How did you know?)<br />
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Since we are also firmly into the teenage years and attitude, I'm not sure if he really gets all the parts of it based of the fact that I get the "IDGAF" face about ten times a day as is for all other kinds of conversations ranging from "Did you brush your teeth?" to "Would you like to watch a movie with me?" So I have to factor that into it too. If there was ever a person that was unapologetic with who he is, it's my Kiddo. I love him for that.<br />
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Cause this is the autism at my house. This is him. I'm not sure how it goes at yours but this is what we've got. I'm not sure how to fully explain it to him in ways that I know that he knows what it means. He might know now but can't fully communicate it with me that he does or if he even cares. I'm just trying to get the sentence in his head so he knows when to pull it out when he's asked.<br />
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This looks like a job for a SOCIAL STORY!!!! (And maybe a showtune. I mean, there's showtune for everything, really.)<br />
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Observe the "IDGAF" attitude. Kiddo doesn't really care what your opinion is of him or if you even have one. He's a baller like that. </div>
<br />Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com4tag:blogger.com,1999:blog-2644538309673050572.post-28218967914745927682018-04-09T19:42:00.001-04:002018-04-09T19:42:55.565-04:00How to NOT talk about AutismI don't know about you but if I had a dollar for every time I found myself stuck in an awkward conversation about autism I could buy Kiddo his own McDonald's franchise. I don't actively go looking for these interactions but they come up now and then. I'm sure you have had them as well.<br />
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Maybe it's at a family gathering with some well meaning in law. Maybe it's with the mom next to you at the "Back to School" night. Autism comes up and the person next to you suddenly has MANY opinions on Autism and is extremely vocal about how you are doing every thing wrong! It's especially wonderful when there's an audience of people around you watching this interaction. Some of whom are equally out of touch with the subject but see it as their chance to hop on board with all their crackpot theories. Despite your best efforts, the conversation is going nowhere good.<br />
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This is when I find myself just standing there thinking "Why did I choose to sit next to you? Why didn't I ask you about your kid or just compliment your shoes or something. Ask about your job. Anything other than sit here and bite my tongue." </div>
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So many of us find ourselves in these situations and we are so worried about coming off badly in our response. We don't want to offend them or hurt their feelings but let me tell ya something, that's some bullshit. Here's why. They surely didn't think that far out when they made their hurtful and/or clueless statements. They didn't remember their manners or if it was the right time or place to talk about an already sensitive subject. For whatever reason, they are not picking up on your social cues and body language that this talk is going off the rails and you are very uncomfortable.<br />
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Perhaps they are the ones that need the social skills training more than your kid.<br />
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The longer we have been "Living La Vida Autism", the more I have no problem stopping these conversations. I'm not saying you should get up and start screaming at them about how they are wrong wrongness sitting in a box of wrong but I have no problem stating "Thank you but that information in incorrect. I'm sorry YOU feel that way about Autism. That being the case, let's not talk about it. Seeing as it's something we clearly have very different opinions about." Yes, you can say that to them. I am living proof you won't die if you do. Look at me, blogging about, all willy nilly.<br />
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And that is usually all takes for them to realize "Oh shit" and shut up about it. Or they stop talking to me. Whatever. We're we gonna be besties? Probably not, so screw it. Why should I have to listen to a ton of Autism Myths that further promote stereotypes just because I'm afraid a person I can tell is a bit of an ass might get upset if I say "No, I'm not listening to this.".<br />
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And yes, I am aware that sometimes these conversations come from people that are also parents of autistic kids. Guess what? Telling them you would rather discuss something else is entirely okay! Seriously, I bet they would like to talk about something else other than Autism. Look deep into their eyes (or not) and just say "Hey, it's me. Same team here. Let's give ourselves a break and not talk about Autism for a moment."<br />
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and Dude, if they still want to go on and on and Autism and Autism about it, CHANGE YOUR SEAT. I give you permission to do so if that is what you are seeking.<br />
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And BUH-BYE. </div>
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You want to NOT talk about it? Come sit by Mama Fry. I'll be happy to talk about anything else.<br />
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com1tag:blogger.com,1999:blog-2644538309673050572.post-88282871768707846742018-03-24T18:16:00.000-04:002018-03-24T18:16:09.893-04:00When we crackI can't say this life gets harder but it certainly hasn't gotten any easier. Every age and phase brings it's own set of issues and complications that we somehow have to make work for him and for us. I wish I could say I handle this life with grace but sadly often I fail. Especially when new behaviors pop up.<br />
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We don't even realize how good we had it until we are in one of those brand new phases and I'm looking wistfully back at them. Thinking about them like they were the love that got away while humming Cinderella's "Don't Know What Ya Got Till It's Gone."<br />
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Power ballad time! Get your lighters up. You see kids, in olden days we didn't have cell phones to hold up in concerts and were forced to use cigarette lighters. Which we held by our very highly teased hair sprayed to the gods heads and it's really a wonder we didn't all die in a great big ball of fire at a concert. </div>
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But I digress...<br />
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The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard. Since it doesn't really ever let up, how do we keep going? I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?) I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window. Probably following something that the Kiddo threw out before it.<br />
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What are we suppose to do when we crack...<br />
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The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die. We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out. Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it. I know. I know. That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.<br />
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I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am. This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them. I feel by asking permission to take one, I am failing him.<br />
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And look what I just wrote! "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission? I guess myself more than anything.<br />
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And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains. They don't get it. They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way. They will think I am talking about them. They will think I don't love my Kiddo. They will take it that I am selfish. They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup. I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology. We just get crapped on to do better but not how.<br />
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Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo. Now look, I totally jam with that whole "behavior is communication" thing. I am just really tired of being told online at every single turn it must be something I've done. Trust me, I am trying. Constantly. I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days. Cause I am running out of ideas. <br />
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Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads. Right now, that's my go to for when I feel like I'm going to crack. Maybe you could share what's worked for you.<br />
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Sometimes the dog pitches in and keeps him busy for me. </div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com19tag:blogger.com,1999:blog-2644538309673050572.post-66149187100823336922018-03-05T20:46:00.000-05:002018-03-05T20:46:29.190-05:00Token Boards<div class="" data-block="true" data-editor="2155t" data-offset-key="59n1s-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="59n1s-0-0" style="font-family: inherit;">We are having some homework drama. He totally can do it. He's just choosing not to and I can't tell if this is an Autism problem or a Teenager problem. More than likely, it's a hellish combo of the two. Ain't I lucky? #Blessed</span><br />
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<span data-offset-key="59n1s-0-0" style="font-family: inherit;">Something has happened in the last few weeks where the Kiddo wants NOTHING to do with homework and I cannot for the life of me figure out why. This is a child that up to a few weeks ago would do it as soon as he got home from school. (Which as a former homework procrastinator myself, I did not understand how he could be related to me.) We've now hit an area of not just not wanting to do it but added gobs of behaviors that he sprinkles all over the experience. Crying, yelling, screaming and grabbing at me the entire time and for a good half hour after the actual work is done. Good gravy!</span><br />
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<span data-offset-key="59n1s-0-0" style="font-family: inherit;">Clearly something needs to be done and I brought up to the teacher. She wasn't by any means giving him a lot or anything that was beyond what he could do. That's one of the most challenging parts of this. He's totally capable of it. A few weeks ago he would actually say things like "YAY! MATH!" when pulling out his worksheet. (Again, I almost question if I was given the right baby in the hospital.) His only struggle was the handwriting part but with a few prompts not to rush and take his time, the whole thing would be done pretty quickly and life at the House of Fry would continue right on schedule. </span><br />
She decided to give him him some super simple homework. Stuff and concepts he's long mastered. She didn't want to get him in the habit of "Throw fit, then no work." which I agree with completely. If it was easy, maybe he would just mellow out and get into the groove again. So far it had been working. I was letting her know that there was less drama and he was just getting it done. She started sending home more challenging work but work he could do none the less and BOOM! It came to a Mac Daddy header last week over four freaking Math questions on a single worksheet. A clusterfuck of a meltdown and all aimed at me. FUN! <br />
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So, back to the teacher with a "HELP ME! I cannot be drinking by 3:30 PM every day or the neighbors are gonna talk." email and this was her reply. <br />
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<span data-offset-key="59n1s-0-0" style="font-family: inherit;"><i><b>"Have you tried a token board?" </b></i></span><br />
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Oh sweet Mother of Mercy.</div>
<span data-offset-key="59n1s-0-0" style="font-family: inherit;">I can't even believe I'm reading these words again but here we are. My Kiddo is 13. You want to talk about been there, done that, and threw the freaking token board out the window because DUDE, we have done that and then some by now. So let me tell you at why with where we are with autism and this journey and all that warm and fuzzy yadda yadda yadda B.S. why this isn't gonna do squat. </span><br />
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Come sit down. Let me break this down like Queen Bey. </div>
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Here's a math equation for it. Kiddo's inability to be focused on a long term goal PLUS having next to nothing that actually motivates him because even "Window Fries" don't have the same value as they used to when he solely existed on them as toddler EQUALS The Kiddo giving ZERO FUCKS about a token board. He just doesn't care. Period. <br />
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<span data-offset-key="2qcqf-0-0" style="font-family: inherit;">Look, I get that token boards/reward earning works great for some kids but there gets to be a point where this classic move just doesn't cut it anymore. Especially after years of various behavioral approaches being done on the lad. He knows your tricks and he doesn't care how hard you worked on your laminate Velcro tokens that you made when you weren't getting paid over a weekend. I get it. Teachers and therapists work so hard with our kids and I am so grateful that they do because they get paid a shit wage and work all the freaking hours of the day. But WHHHHHHY on God's green earth is this the only go to ya'll got? </span><br />
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<span data-offset-key="2qcqf-0-0" style="font-family: inherit;">I kind of wish teachers would just say "Well, shit, I don't know what to do either if that doesn't work." Let's all just be in that feeling together. It's okay. Sit right next to me. I'll share my fries with you too. Seriously. I'm not saying I know more than you. Not in the slightest. I have ZERO clues just like Kiddo has ZERO fucks about those damn tokens and a timer. That's why I'm emailing you all the time crying for help. </span><br />
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<span data-offset-key="2qcqf-0-0" style="font-family: inherit;">And at this rate, I have to be real about his future. Part of me wants to just say "Okay, we're just not doing this homework stuff anymore." and insist it be added to his IEP. The other part of me really likes this teacher and she's figured out ways that work with him before. We email some more back and forth and I think we might have something. I explained why the token board idea doesn't jive here and that maybe we could focus more on his typing skills since it's when he actually has to write the answers he loses his shit. We have all the products that Apple makes and plenty of WiFi. (I mean clearly it's a strong signal as I'm emailing the teacher all the freaking time.) We're moving on to stuff he can email to her and I'm hoping like Hell this might be the thing that works. </span><br />
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<span data-offset-key="2qcqf-0-0" style="font-family: inherit;">Cause much like the Kiddo, I too give ZERO fucks about a token board and I'd rather focus our collective energy to something that might prepare him more for the future that is rapidly approaching. </span><br />
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<span data-offset-key="2qcqf-0-0" style="font-family: inherit;">Fingers crossed! Let's hope this works. </span></div>
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Eileen Shaklee http://www.blogger.com/profile/04658354442888448425noreply@blogger.com5