tag:blogger.com,1999:blog-43448781594183820342024-03-20T01:02:38.903-07:00ADVENTURES on the SpectrumADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-4344878159418382034.post-90659138426682133242014-04-24T08:26:00.001-07:002014-04-24T09:12:52.421-07:00There's No Business Like Autism Friendly Show Business<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Being a parent of Autism you find yourself in situations where your brain is constantly thinking about staying a step ahead of your child.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Whether it be an event, Dr's appointment, store, etc. We walk into the situation and instantly scan the room and everyone in it. Then the wheels turn rapidly and our minds begin to race. Things run through our head like, the noise will hurt her ears, this crowd will overwhelm him, Oh dear there are a lot of breakable things in here, there are a lot of young children who will stare at him when he makes his noises, where can we sit, if we have to leave quickly what's the best route out, please God let her stay calm, give him the ipad now, where can we stand so she can jump and pace, please don't let her hit anyone, oh there are a lot of people I don't feel like apologizing to all of them or having to explain today. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Those are just a handful of thoughts that run through our minds. As a result of this a lot of families who have children with autism avoid events because the stress of just entering a room can be so painful and energy depleting. I can not count how many times I have left birthday parties, shows, family gatherings in tears. You feel battered and so alone as the world watches your child struggle through their Autism. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">While being a parent of autism is so rewarding and fulfilling, this part I am talking about is so isolating. Everywhere we take our children, if we are brave enough, we are working to keep the environment all around us stable and subtly hush our kids from being themselves.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I won tickets to a Disney Jr Live performance from a lovely theater group named, TDF (Theatre Development Fund). These were tickets I didn't cringe at. My mind was at ease. These were tickets I could celebrate and be excited to take my daughter Grace . Why, you ask? Because the show we were going to attend was referred to as an "Autism Friendly" show sponsored by TDF.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I didn't know the details but I knew "Autism Friendly" meant we could go and she would be amongst an audience filled with families like us. There would be no explaining, no apologizing, no worrying. Just a show we could bring our daughter to, like everyone else in the mainstream world gets to </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">do.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">From the moment we entered the doors, it was like we stepped out of reality into this magical place where we were all accepted. I watched as a girl spun in circles and a boy toe- walked to the line. No one stared. No one reacted. Every adult had big warm smiles on their faces as well as the kids. There was such a positive energy that engulfed us all. As we proceeded to our seats there were tons of red-shirted Mickey eared volunteers. They were so kind and friendly. Every child they interacted with they knelt down to eye level and engaged in as much conversation as they could get. They were so helpful and put a great vibe for the entering process. They were carrying around bags of sensory toys and ear plugs and graciously handing them out to every kid they could. Grace loved the little "fidget" she received. (we call them fidgets, because it helps keep our kid's hands busy so they can remain calm and/or seated in a stressful situation). They also had advertisement cards of a list of restaurants that were going to be "Autism Friendly" that families could go to after the show.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We anxiously climbed more stairs, just thinking we were going to be directed to our seats. As I reached in my bag for our tickets, I lifted my head and we were greeted by more genuinely happy Mickey eared volunteers. There behind them were blue mats on the floor with bean bag chairs and every soothing toy imaginable. They had a sign designating the area as the "Quiet Area". Now a lump began to form in my throat. This was so thoughtful and so helpful. Imagine how amazing it would be if these quiet areas were in places we visited in everyday life? After the quiet area we walked past the "Activity Area" , where there were fun stuff for the kids to do after transitioning out of the "Quiet Area". I was speechless. I never felt so at home in a public place as I did at that very moment.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We quickly got to our seats as Grace and her friend dragged us through the calm crowd of people. As we got them settled and fed them their snacks, I closed my eyes and listened to all that was around me. I heard parents speaking in "ABA language" (ABA is a behavioral therapy widely used on those with Autism) to their little ones, I heard stimming, I heard laughter, I heard high pitched vocalizations, I heard low pitched vocalizations, I heard a room full of vibrant children with Autism. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I heard a room full of acceptance, empathy, and compassion. Mostly I heard happiness and fun.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">As I opened my eyes I saw Grace in a way I haven't seen her in a long time. She was relaxed and organized. The show began and she jumped from her chair and her smile lit up the room. The lights stayed on so everyone felt secure. The sound was lower than a typical show so our kids felt safe. There was another little girl standing as tall as could be on her chair, no one said a thing. I think we were proud her parents could be at ease and let her get her chair standing out of her system. The little girl behind me was kicking my chair, and as the mother went to apologize, I looked at her and said "Not today, you don't have to be sorry today!" Her eyes smiled at me and she nodded. There were kids with their hands over their ears and silencer head phones on, no one stared or even questioned it. We knew why.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">For 90 minutes the world was ours. It was a world strategically designed for all with Autism Spectrum Disorder and special needs. It was how I wished the actual world could really be. I never saw so many people in our situation or a similar one, all together in a room at ease. When you have Autism or any special need in your life, you become apart of this community, of accepting people. It's a community where you can look at another smile and know exactly how they feel or what they are thinking. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">As we all walked out of the Madison Square Garden, it was as if no one wanted to leave. A lot of families lingered and were just getting a fill of their last moments in our bubble away from society. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I am so thankful to Disney Jr live and all of the staff and volunteers at TDF, who went above and beyond for our families. They planned everything so perfectly and I saw huge successes amongst many families. They made it easy for us to go somewhere and just simply not have to worry. This event was not only about Disney Jr, it was a family outing I will remember always and cherish in my heart. It was an outing that I cried happy tears on our way home, instead of tears of pain and feeling like I have failed as a parent.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Groups like TDF give us more than a show, event, or an experience. TDF gave me hope and acceptance, with no questions asked. The entire day was more than I could have ever asked for my daughter and our family. I felt so honored and so blessed we were able to be a part of it and I was picked to write about it. We need more of this in society, more events and more groups. Events like these are so important to families like mine. We need an "Autism Friendly" world!</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Thank you TDF I will keep this memory and great experience tucked in my heart forever.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">**SIDE NOTE not only were there coping tools for our kids on site, on their website they had links to social stories and ways to help our kids prepare for the show!! Genius**</span><br />
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<span style="font-family: Arial;">*AS STATED FROM THEIR SITE</span><br />
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<span style="font-family: Arial;">TDF is a national not-for-profit performing arts service organization that serves both individual productions and their potential audiences. For more info visit: <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.tdf.org%2F&h=LAQH8M_y-&s=1" rel="nofollow nofollow" target="_blank">www.tdf.org</a></span></div>
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<span style="font-family: Arial;"><span class="fwb">Mission</span></span></div>
<span style="font-family: Arial;">Theatre Development Fund, a not-for-profit organization, was created with the conviction that the live theatrical arts afford a unique expression of the human condition that must be sustained and nurtured. TDF’s twofold mission is to identify and provide support, including financial assistance, to theatrical works of artistic merit, and to encourage and enable diverse audiences to attend live theatre and dance in all their venues.</span></div>
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<span style="font-family: Arial;"><span class="fwb">Company Overview</span></span></div>
<span style="font-family: Arial;">Created in 1968 to help an ailing New York theatre industry, TDF has grown into the nation's largest not-for-profit performing arts service organization. Our discount ticket services -- TDF Membership and TKTS Discount Booths help make theatre, music and dance accessible to more than 2 million New Yorkers and visitors each year. TDF's Education programs introduce theatre to thousand of students each year. TDF Accessibility Program (TAP) makes theatre accessible to those with physical disabilities* </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Please check them out on Facebook and give them a like ;) <a href="https://www.facebook.com/TheatreDevelopmentFund/info" target="_blank">Click Here TDF</a></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-74385983264208546732014-03-25T09:09:00.000-07:002014-03-25T09:09:15.590-07:00We've Lost Her Again...She has seeped into that world of hers I deeply fear. It's that world she goes to, when our world has failed her. Our world no longer feels safe to her, she has no security and doesn't trust anyone around her. When she comes to our world it's usually with stimming, scripting, crying, screaming, high pitched vocalizations, manic behavior, ticking and that unintelligible language she resorts to.<br />
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She has clarity at times, but it diminishes in minutes.<br />
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Truth is, I knew this was going to happen, I knew it, and something in me remained silent and decided not to follow my gut.<br />
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Grace was placed in an inclusion class at the beginning of the year, and I knew it was not the appropriate setting for her. She was coming from a class of 9 children on the spectrum with 1 teacher and 3 assistants. There was absolute control in that classroom. That was her life for 3 years. That was all she knew.<br />
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Entering kindergarten my school district thought she might do well in the inclusion class, 17 kids, a special ed teacher half the day and a 1:1 for Grace. I knew it was wrong for her, I knew it all along, and I said nothing. And here we are searching for a new school for Grace.<br />
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I think when everyday is a constant fight, there are some moments when you just don't have any fight left in you. Maybe apart of me hoped and wanted to believe she could handle the bigger class with the typical children? Maybe I just wanted us to feel normal for once? But I knew in my heart of hearts...it was going to backfire in my face.<br />
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Everyday I wake up with anxiety. Will she have a good day? Will the school call me? Will she hit someone? Will she hit a peer? Will she injure herself? Will the kids laugh at her? <br />
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From the moment we drop her off until the moment I pick her up these anxieties and fears race through my head. It is almost a sigh of relief when her school day is over, because it is one more day closer to the end of her school year. If the behaviorlist walks her out, my heart drops, because that's the sign of a very unsuccessful day.<br />
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I can't believe we have lost her again. Everything we have worked so hard for is gone. I am not sure what she learned in kindergarten this year, but it taught me to always follow my gut and my instincts. I also learned to find my voice for her, and face the reality of the situations presented when it involves her education.<br />
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It took 5 people, 45 minutes, tears, screams, unintelligible language, hitting, kicking, scratching, coaxing, transitioning, carrying a thrashing 60 pound girl, to get her into school today<br />
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I felt lost as I held her fighting body. Ernesto looked like he was going to pass out from sadness and heart break. They told us to leave, they could handle it. Everything in my body wanted to scoop her and just take her home. I forced myself out of that school, into the car. My heart is still beating so fast, and the tears are just pouring out of my eyes. I feel helpless, because I can't help her. She is suffering and in that moment and many moments there is nothing I can do but just, WAIT. No child or parent should ever have to endure this emotional pain while dropping off at school.<br />
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After this morning I vow I will never let Grace down in this way ever again. I will do everything I can to make our world desirable so she can come back to us and trust us again. Whatever it takes, whatever I have to do, I will do it as long as I have to. We need to find her again. I need my girl back.<br />
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(DISCLAIMER:I will say her team is great, they have done everything and more for her. They have tailored her education in the best way possible and they are so loving and so patient with her. I am very thankful for all they have been trying to do. It is just not working. The reason being is the school is not an appropriate fit for her. She needs an appropriate setting for her needs.)<br />
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com2tag:blogger.com,1999:blog-4344878159418382034.post-13260537686294378572014-02-05T19:40:00.000-08:002014-02-05T20:10:29.390-08:00Because of Her Everything is OkMy sweet angel girl,<br />
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In 2 days you will be 6. I have started this letter over and over but I can not seem to get through the first sentence without crying. <br />
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You are turning into this magnificent little girl. I actually have no words for how proud I am of you and how you WOW me on a daily basis.<br />
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I still can not believe you are turning 6! Grace, in the past 6 years, I have never seen a little girl stay so strong and never give up. And your WILL, I admire that about you, you have this WILL and passion for life like none other. I love to watch you experience the world, because you experience it in a way others can not even begin to try. You see every detail and every piece of what you are doing and you do it so effortlessly.<br />
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The bonds you have created with the people around you leave me speechless. You have this way with others. You touch everyone you come into contact with in such a deep compassionate way. You change people, you make the ones around you want to be better. You are my inspiration, you are the reason I have worked so hard on making myself better. I learned how to live, because of you. <br />
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I learned how to smile a true smile, I learned how to laugh a true laugh, I learned how to cry a true raw cry. You have changed me and continue to on a daily basis. As each day passes I am anxious to see what you will come out with next, or inspire me to do next.<br />
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From the moment we found out about your presence in this world, all odds were against you. Many of my closest friends told me not to have you and how having you would be the biggest mistake in my life. From the very first moment I heard your little heart beat, I knew different, because this wave of peace was constantly flowing through my body.<br />
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As you grew inside of me, so did people's negative opinions and judgments. Your Daddy and I didn't care, we walked with our heads high, and promised each other we would give you the best life possible and all the love we had. It didn't matter if you weren't planned, or we weren't legally married...that doesn't matter. What mattered and matters is YOU my Grace, were created from the greatest and strongest love possible. You were meant to be. You are a gift, and more than I could of ever asked for. I say it all the time, YOU rescued me, and I will remind you this every single birthday.<br />
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I look back onto when I was pregnant with you, and the people who supported me would ask how was I so calm with all the negativity, and I would answer, "She calms me, because of her everything is going to be ok"<br />
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And despite of what we have been through, little girl...<br />
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It is now 6 years later, IT is still OK!<br />
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I love you to the moon and back my boo bear, and as each year passes by, remember to hold onto your dreams and never ever give up because you can accomplish anything.<br />
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Love Always,<br />
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Mommy <br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com0tag:blogger.com,1999:blog-4344878159418382034.post-84976658678353486692014-01-17T11:40:00.000-08:002014-01-17T11:40:16.543-08:00I Was Gone for a Minute, but Now I'm BackI have sat down and started numerous entries. A part 2 about my weight loss, about our big move into our new home, about my darkest day this months, but something was blocking me. <br />
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Grace has been struggling immensely at home and at school, between her meds, diet, and not being in her home for a year...oh and plus being on the spectrum. The past 2 weeks we are moving upward and onward and things are looking much better. So I guess a part of me is feeling more at ease share and blog?<br />
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I am getting off topic, as usual, FOCUS, blocked, so I have been blocked. Every time I would sit down to write, my hands hit the key board and there was no flow, just me pushing and squeezing mini thoughts past this huge wall that I couldn't see past. I realized what the wall was or is rather....'<br />
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It is partly that I have not been completely honest with my readers about Grace, and my biggest thing I strive for with my blog is honesty, good, bad, vulnerable, sad , mad...I always write honesty and never sugar coat.<br />
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Grace was diagnosed with Tourettes Syndrome, and we have been quiet about it. I am not sure why? I am having a hard time processing it. Why Tourettes too? Doesn't she have enough to deal with, doesn't she stand out enough already? She makes noises over and over and I cant stop them. There is nothing I can do. I cant tell her to stop. <br />
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When the doctor confirmed it, I pretty much knew the past year or so, but when kindergarten started her ticks have been through the roof. I am attributing it to the stress of being in an integrated environment coming from a self contained class room years before.<br />
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We threw her on meds without any questions. It was probably one of the most impulsive decisions I have ever made with her and the top 5 worst mistakes I have ever made as a parent. I put her on meds for me...because the ticks bothered ME. How selfish? I look back and I can not believe I did that to her...The meds made her worse it was like she was an addict coming up and down off of a high. She would sleep during the day and the afternoons, and when she was awake, it was like my Gracie was not even there. "But her ticking was gone." I thought to myself. Yea and so was her personality. Her meltdowns turned into psychotic episodes, a switch was off in her brain, the same switch that made her tick, but also that switch made her a functioning child.<br />
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Enough was enough, I waited 3 weeks and weaned her off the TENEX. Her ticks are back, but so is my Gracie. My girl is present, she is back to giving me a run for my money and back to making me laugh and want to pull my hair out at the same time. She is stable.<br />
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I feel so ashamed that every time she ticks, my heart drops, and I feel angry. I am so mad...Every tick is a reminder to me, I can not fix her. This is my biggest battle as a special needs parent...there is no band aide or cream or antibiotic to rid her of her ticks. I can't give her a lollipop and tell her to stop. I have to sit and experience it with her.<br />
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Last night, I could of slapped myself across the face. She was gulping and gulping over and over, and it was like nails on a chalk board. The madder I get, the sadder I get, because I feel like a monster. She is my baby girl and I should not feel this way. After she went to sleep I had some time to myself to reflect and gather myself.<br />
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I made tea and sat and just felt the guilt dripping all over me. I was so guilty...to ever feel this way, but I had to admit it to myself so I could move past it. I needed to break down the wall that was blocking me. The TOURETTES wall. It is OK to feel this way, we are all human. My denial finally faded. It's OK, I said to myself, It is going to be OK. I just was breathing deep...saying it is OK. With each breathe the anger, guilt, denial left me, little by little. My eyes closed and the tears came, but they were tears of healing and happiness...all these months I was held captive by these embarrassing feelings...and now I was finally free.<br />
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Her ticking doesn't affect her day...she is learning, she is happy, and she is thriving, she has autism, and Tourette's.<br />
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I forget, it is not about me. I constantly have to remind myself. It is about her. Her ticking is apart of her and if she needs to gulp 300 times in a row at the end of the night, I will sit by her and love her and be there for every gulp. I will try to heal the Tourette's for her, but not for me. And for now she is OK. So we have entered the beginning of our next adventure, Tourette's, and we will make it, because we always do. I know I will make it, because I have Grace as my daughter, and the lessons I learn from her every day make me stronger and better.<br />
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Strength. Love. Acceptance. Onward. Upward.<br />
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Four words that mean more than you'd ever know to me.<br />
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-79383149443385811252013-10-20T18:18:00.002-07:002013-10-20T18:52:07.752-07:00The Beginning of the Rest of Your Life <div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Like many, I use to obsess with being thin, because in our society for the most part thin=hot and fat=not hot. This is embedded in us at a very young age. It's branded in our personality and our social make up. It pretty much carries over into adult hood and eats us from the inside out. It was like a tape recorder played in my head over and over again from the age of 8 "YOU MUST BE SKINNY,SKINNY MEANS PRETTY, BE SKINNY, SKINNY MEANS HOT, IF YOU ARE HOT YOU WILL BE HAPPY AND SUCCESSFUL SKINNY SKINNY SKINNY SKINNY" </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I struggled with my weight starting at the age of 12. I never liked the way my body looked. I was never happy or satisfied, no matter how thin or heavy I would get. Nothing was ever good enough.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Like the majority of you reading this, I was a YO-YO dieter and a sporadic exerciser. I would join the gym, go for 2 months and never go back. My goal was to get the weight off as fast as I could and I would do any fad or mainstream diet to do it. You name it I dabbled in it. I even tried laxatives and heavy duty diet pills for a while, seemed like a good idea at the time. I would go as far as endangering my life to lose weight. I failed at weight loss every single time. AS fast as the weight came off, it came back on even faster.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After I entered motherhood, my self esteem about my body plummeted. There was only so much time in the day...and at that point I did not have time to diet or exercise or even shower. I would still go up and down in weight, based on my never ending fluctuating mood swings. My whole life I have fallen in and out of depressions and that has played a huge role in my issues with my weight, my body and most of all the way I thought and lived my life . Then eventually I would shrug and say "it is what it is" and just accepted this way of life. I immersed myself into my daughter and her Autism and just forgot about ME for almost 3 years. I do not regret this, because Grace is in a great place because of what I did for her, but I wonder if things would be different if I had the confidence and strength I lacked back then.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Hurricane Sandy catapulted me into the deepest, darkest depressions I had ever been in. Our lives were uprooted and we literally had no where to live. We bounced from friend's houses to hotels back to friend's houses. I have never felt so helpless in my whole entire life. We had to start our lives over from scratch. Everything we worked so hard for was washed away, GONE. My sense of home and security was stolen so quickly and there was absolutely nothing I could do. I felt so helpless and out of control. I was ready to crawl up into a ball and just stay there.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Everyone and I MEAN everyone I had crossed paths with in my life reached out to my family and me. People were sending checks, supplies, clothes, you name it it was coming our way. The amount of people and organizations that helped us was more than I could have ever imagined. As word got out about our situation and our story, people we have never even met started reaching out to us. I can never express how thankful and blessed I feel for every single person who helped us a long the way. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Something started forming in me, and I look back and realize it was hope and inspiration and something else I lacked for a long time, strength. There was this voice that came through the darkness in my head and it nagged me all day and night saying "GET UP THIS IS YOUR LIFE GET UP OFF YOUR ASS TAKE CONTROL AND LIVE YOUR LIFE THE WAY YOU WERE MEANT TO"</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">...and so I did. I got up and vowed to myself that I would take control and change my life, completely.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"It is not until you have lost everything you have gained everything." </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">This is a quote that came to me at the most perfect time in my life.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It is 10 months later and I have never felt more amazing in my whole entire life. I am changed for the better. The most marvelous part of it all is I CHANGED ME, I did it for me and by me. You can too. But there is a list of things you need to do immediately before starting.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><u>The list to the beginning of the rest of your life:</u></span></h3>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">1. Forget about wanting to be skinny, get that out of your mind NOW, this is not about being skinny, it is just an added extra bonus with what you are about to do. YOU WANT TO FEEL GOOD, YOU WANT TO FEEL HEALTHY. YOU WANT TO GET FIT AND STRONG. YOU WANT TO FEEL AN INNER AND OUTER PEACE.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">2. The plan you are about to read about is not a diet plan, IT IS A LIFE STYLE CHANGE. Throw the idea of dieting out of your brain, erase it from your life. There will be no more dieting from here on in. You are changing your life with better life habits and healthier eating habits.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">3. Repeat after me: PATIENCE. You have to have more patience and dig deep down for it. Let go of quick fixes, the do not work and they never will. You have gotten yourself to where you are after how many years...so you can not fix it to the way you want over night. Instant gratification is not in the plan. The slower you progress the better. Patience. Trust me.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">4. There is no finish line, this process will never be finished. After every goal you succeed you will make more. I myself am still working at this every day.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">5. Be OK with FAILING. Failure is inevitable when it comes to success and achieving your goals. The key here is to accept you may fail along the way. And after you fail you YOU WILL FIND THE STRENGTH TO GET UP AND MOVE ON. This is one of the most important things you have to do.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">6. This step is different for everyone. You need to list the things you want to change about yourself. These are the things that hold you back in life. Mine were, not letting people affect me, re training my mind to react differently to negative situations. Another one was not to shut out the world and get down on myself. A big one for me is to finish what I start and let go of my baggage that holds me back. There are more to my list and as I cross one off another one gets added on.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">7. Keep an open mind and ALWAYS BELIEVE in yourself.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">8. Excuses. There are none. No more excuses from here. Things will always happen and life will always happen. There are no more excuses. If it doesn't work you will find another way. YOU WILL NOT QUIT AND YOU WILL NOT MAKE EXCUSES. NO EXCUSES.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">9. Commitment. Have it in every area you want to improve in your life.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">10. Do not compete with anyone around you. THIS IS YOUR JOURNEY AND YOUR PATH. We are all different have different ways of being measured in life. THIS IS ABOUT YOU if you want to compete then only compete with YOU! AND ALWAYS BE HAPPY for other's and their accomplishments. No one is better than anyone.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">11. HAVE FUN!!! LAUGH!! SMILE!!! ALWAYS STAY POSITIVE!!! NO MATTER WHAT HAPPENS STAY POSITIVE!! If you are not having fun for the most part...nothing will change.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">12. Get a journal or something to write in along the way. Use the journal for the steps listed above. Having everything on written by you on paper is very essential.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">13. THE MOST IMPORTANT THING IS TO DO THIS FOR YOU! Not to impress the opposite sex, not for a high school reunion, not for anything other than YOU. DO this for YOU!!</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After you have completed each of these steps you are ready to move into the next phase of your new and better life.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><u>Three Areas Of Your Being and Who You Are</u></span></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">On my journey I realized something that is rarely addressed during the weight loss process. We focus on pounds and food mostly. There are 3 things I focus on daily and it all ties together, and with these 3 areas being worked on and modified your weight will come off and stay off. There is no magic involved, just a lot of hard work, dedication, and commitment.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When we want to remodel or renovate a room or an office what do we normally do? We clean out the entire area. We rip off the old parts. We essentially gut the area in preparation for new walls, floors, paint, furniture, etc.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The same concept applies to you. If you want to change how you feel, eating low calorie foods will change your weight...but not how you feel and think about yourself. You need an entire renovation, or the term I like to use is a cleaning or cleansing. You need to cleanse every inch of your being. You need to "gut" every old negative part you want gone to make room for the new positive parts you want to add.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Before I go into telling you what 3 areas I am suggesting and using for myself, you have to know how powerful the mind is. Your mind and thought process is going to be your biggest obstacle through this. With patience and understanding, you WILL bring your thought processes to the level you want it to be at and to a level you did not know was achievable. As the days go on and you become stronger the struggle will still be there with your mind, but the amount of time you struggle will decrease indefinitely. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The three areas of your being that needs total cleansing is your MIND, BODY, and your SOUL. But how do you attain this?</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>Mind:</b> You will re train your thought process, you will believe in yourself, and learn to fight the negative thoughts that cause you to give up.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>Body:</b> you will love and accept your body at every phase it is in, you will exercise to your own ability but always stay active, you will eat as clean as you can and eat healthy, take supplements, drink shakes etc. You must remember it is not to be SKINNY, but to be healthy, fit, and energetic and also full of life.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>Soul:</b> You will get in touch with your spiritual side in what ever way suits you. You will learn things about yourself you never even knew. You will get in touch with your inner self that some of us avoid at all cost. This is not about God or religion for everybody. This is about finding that piece in you that makes up who YOU are as a human being. It is about learning about the energy you give off into the world and accepting yourself fully.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I attack the Mind, Body, Soul cleaning on a daily basis. It is a lot of work but the rewards are %100 worth it.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Now that I have explained the skeleton of the process that I have been using for the past 10 months. In my next blog I will go into exactly how I transformed and cleansed my Mind, Body, and Soul. I will discuss the foods I eat, affirmations, my spiritual side, and much more. I am so excited to share this with you all, thank you for all the support so far. STAY TUNED PART 2 coming very soon!!</span></div>
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com2tag:blogger.com,1999:blog-4344878159418382034.post-12446707529102257542013-07-10T06:43:00.001-07:002013-07-10T06:43:25.948-07:00Imperfect Parents...WE DO EXIST<span style="font-family: Georgia, Times New Roman, serif;">As parents we all love to paint a perfect picture to the public. We make sure our kids are clean, unwrinkled, well mannered, well spoken, and other unrealistic things like that. The best at soccer, the smartest in the class, an all star gymnast, VP basketball player... And as moms we must have the best baby bag, the best minivan, the biggest diamond ring, a marble island in our kitchen, and of course a very successful career husband. Am I wrong here?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">One thing Autism taught me very quickly, was all that above is well...for the lack of a better word...it is all BULL SHIT. I am going to be honest that I wanted all of that crap above, because I grew up in a society where you weren't good enough if you weren't the best, richest, fastest, prettiest blah blah blah.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Then Autism knocked on the door. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">In the beginning I still lived in that fantasy world where everything had to be perfect on the outside. Then one day Grace melted down in a CVS and threw up all over the place. It was one of the first times the world saw the imperfect side of my parenting. Another time she threw a butter knife across the restaurant. So, I realized something really quick. Perfect is not real. And a lot of imperfect stuff happens behind close doors. And you know what? It doesn't make YOU a bad parent. But you will become a better parent when you admit to yourself, you can't control it, and it's not going to be perfect. Also embrace all the imperfect stuff and allow it to be apart of your life. Honestly if your kids aren't getting into stuff and flinging poop across the room, you are doing something wrong. ;)</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">You are also doing something wrong...</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never had crayons or markers on your walls or furniture</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if your kids has never gotten the scissors and cut their hair</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if your kids have never pooped/peed/vomited on the couch</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if your kids drew with sharpie marker all over their face</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if they never sprayed a whole can of shaving cream and baby powder all over the bathroom and their body</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if they never have choked on something or almost choked</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you've never called poison control</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if she never got a whole tub of hair gel...in her hair</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if she never punched a peer or pushed a peer out of her way</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if he has never eaten dinner under the table</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never let them watch TV or IPAD all DAY</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if he has never been inside the toilet bowl...yes inside</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if she has never hit, kicked, scratched, punched, head butted you in a room full of people</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if she still has a bottle at 4</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if he still has a pacifier at 6</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if she never has spilled a whole box of cereal on your bed</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if he never got into jars of Vaseline...peanut butter...or anything sticky like that</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never brought them to the bus in snow man pajamas in JULY with hot pink nikes</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never fallen asleep and woke up to your daughter on top of the fridge or inside the dryer</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if your house is never a mess</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never forgotten to buckle the car seat</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if you have never sent them to school with unbrushed hair/teeth or unbathed</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">-if you have never let them be naked or just chill in their underwear at home</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if you have never let her wear rain boots or ear muffs in the summer</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if they have never made any type of public 'SCENE"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">and my all time FAVORITE</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">-if they have never walked in on you having SEX and assumed you were play fighting and then proceeded to jump on you...yea true story ;)</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Here are some of MY greatest parenting moments :) and remember EMBRACE the imperfections of parenting...because in the end you will be a better parent.</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com29tag:blogger.com,1999:blog-4344878159418382034.post-35908976148680440282013-07-07T20:30:00.001-07:002013-07-07T21:08:06.154-07:00Listening Close EnoughIt's summer! We have been doing all types of fun things before school starts up again for the summer. Today we went to a birthday party at a local amusement park. Grace blends in with all of the children. Which is sometimes hard, because when a behavior arises no one knows how to take it. Why is this girl repeating her self over and over again or why can't she comprehend a simple social cue? Why did she just punch her mom?<br />
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She ran on the fun house ride which involves a lot of motor planning. At first there were no lines so she could take her time maneuvering and doing all the climbing and such. As she came off she went back on again and again. At this point the fun house was getting a little more crowded so each part had extra waiting times. And it started. As she waited behind people she would script. She would pace backwards. The climbing she would get trampled or pushed back and have to restart again and again. In line for the slide part 4 kids passed before she realized she was in line. She came running off the slide and asked to go again. I said "of course!", inside I was screaming NO.<br />
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There was now a huge line formed to get in. I saw her get on line, walk off, get back on line, walk in a circle around the line. She then ran to me and grabbed my hand and pulled me to the line. If you knew Grace you would know she is extremely verbal, but moments like this she has no words. I went on line with her and assumed I could walk away. When she was solo she seemed so lost and so confused. Finally she got in!! And again she went slowly but surely, climbing as the other kids lapped her. She got to the bridge and paced back and forth and to the slide, after 8 or so children passed her she finally went down the slide.<br />
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It's hard to watch. It's like someone squeezes my heart and sets it down in my stomach. I get so emotional because my mind races to the future when I won't be there to bring her on the line. Of course as my mind is racing with all this fear and trepidation I see this beautiful girl smiling bright as her little butt scoots down the slide.<br />
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This is all she knows. She doesn't know any different way to do things. She may stand out to others. But for her, she's just being herself. And as she gets lapped in the fun house she never bats an eye. And when she's climbing and gets pushed down, she keeps climbing. All of this with such determination. She never gives up and she never complains. And when she's ready she will go down that damn slide. If she needs to pace or script so be it.<br />
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It's not about me...and what I see. It's about her. It's about her confidence and her never ending hard<br />
work. Her determination to do things is admirable. Her personality not caring what others think or do is admirable.<br />
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When her feet hit the ground after the slide, my pained squeezed heart swelled. The hurt and sadness broke off and it filled with pride. I am so proud of my daughter. She teaches me something everyday that is if I listen close enough.ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com2tag:blogger.com,1999:blog-4344878159418382034.post-63079534932789642282013-07-07T08:29:00.001-07:002013-07-07T08:29:28.373-07:00She knows me so well...One thing my daughter doesn't lack in all her struggles is intuition. Since she's born, she's known me so well. She eased me into motherhood slowly by being a great baby. She then eased me right into her Autism diagnosis.<br />
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Yesterday was a bad day for me. I left the couch when necessary and just drifted through my day in zombie mode. I never know what triggers me, but something really triggered me. I haven't had a day like this since March. The sound of anyone's voice were nails on a chalk board and anyone's touch was like rubbing two pieces of sand paper together. <a href="http://pieceloveautism.blogspot.com/2013_02_01_archive.html" target="_blank">(Click here to read more about my bad days)</a><br />
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Except hers. Somehow she just knows. She plopped down on the floor with her toys and her iPad and never left my side. She barely spoke to me or touched me. Even when she wanted the channel changed she just would hand me the remote. I was making her a shake and burst into tears in the kitchen. I feel so guilty I expose her to this, this ugly horrible side of me. But there are days when I just can't snap out of it, no matter how hard I try. I focused on my tears hitting the kitchen counter and cried the most when the blender was on. I watch myself outside of my body when I'm like this. I see this useless girl just sitting there and I want to shake her. "Snap out of it dumbie", I scream. But I can never hear me. How could I be so selfish and do this to my daughter? Why can't I get my act together?<br />
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I turned my bad day into a "camp out" in the living room with sleeping bags and tents. She also had all of her meals at the "camp out". Through out my journey of bad days Grace over exceeds my expectations every single time. She jumped on the couch with me and we napped for 3 long hours. Her head was on my chest and I breathed her in the whole time. I traced the outline of her profile with my finger and whispered in her ear like I always do, "Mommy's so sorry Grace, mommy will be better." A promise I can't keep, but I try, I really do try.<br />
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She knows me so well.<br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-54362208264351541122013-07-01T00:53:00.000-07:002013-07-01T06:24:34.898-07:00A New Type of Mother: Ditching the TimelineGrace and I went to the city today. (Manhatten) It was an impromptu adventure with very little planning. She is obsessed with public transportation so we took a train, a bus, and a taxi. It absolutely made her day!<br />
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We were patiently waiting for the bus and the anticipation on her face, took my breath away. A bus ride...my 5 year girl...enjoys the simple things in life. The bus pulled up and we inserted the metro card and found our way to a seat by the window, of course. She sat with a giant smile and took the whole experience in. She looked so free. She had no stress in her eyes, just this free spirited light hearted girl.</div>
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As the bus rode on I flashed back to me 3 years ago, mapping out her timeline, figuring out ways to get her caught up to her age appropriate milestones. I remember reading every progress report and evaluation closely and putting a time frame in my head when she would achieve that "goal". I was so neurotic. I became obsessed with milestones that I lost time with my beautiful girl. I lost breathing in and living moments. I was too busy computing time lines in my head. I do not regret all the work I did, but if I could go back, I'd probably lighten up a bit. The funny part is, if you asked me 3 years ago I would of told you I was "fine" and "living every moment". Truth is I wasn't, well not the way I think I should of. </div>
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The last month or so somehow I ditched the stupid timeline. I've never felt so free as a mother. I feel this new found love for motherhood that I've kept hidden by this encapsulating worry and fear. Something in me changed and I let go a little bit. Trips to the play ground aren't filled with me worrying if she will be socially appropriate, or is she climbing on the apparatus correctly? If she rather play with the 3 year olds, good for her! If she wants to sit somewhere and script, Good! If she melts down, we will just work through it, like we always do. It's not like shes never melted down before. I've come to realize she will do stuff in her own time or maybe never do it. Maybe she will never ride a bike? Maybe she will never be class President? Maybe she won't go to college? I am not saying she won't do these things...but it's ok if she doesn't. After watching her today, my main concern for her is happiness and all the other Autism/development stuff follows after. She has her own path to fulfill, and I know now I have minimal control on her path, but I will guide her as much as I can.</div>
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So today, her and I lived in a moment of time. I took every ounce of it in. We ran and played. We hugged and kissed. We laughed and snuggled. We sang and we talked. I listened to every word that fell from her lips and watched every smile, every skip, run, and giggle. I cherished every moment. And for</div>
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this I'm a better Mother.</div>
ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-61990736061370632802013-05-09T09:16:00.000-07:002013-05-09T09:16:30.195-07:00Guest blog for Find My EyesThere's a girl at the Birthday Party doesn't seem to quite fit in. Her social cues are off and she rather run around than sit and play. She's a gorgeous little girl, some say her beauty portrays a porcelain doll. She pushes kids out of the way, not because she's mad, but because she hasn't quite figured out her place in space and using her words correctly to do so. Everyone notices she's a little different. But she's so cute. But she can talk. But she's so smart (splinter skills). But she can walk. But she looks so normal.<br />
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"Happy birthday to you Happy Birthday to you YEY" the crowd screams. She screams in horror and sometimes flees under a table. No one reacts, but everyone is wondering why this little girl just did that. It's cake time. Also an indicator the party's almost over. She melts. Screams. Hits her mommy. Scratches her mommy. The whole room stops. Mommy removes her from the room. She's calm again playing with all the kids. I can see she's melting. I see her time ticking away but I remain on the sidelines. I watch her, she flees under something and lays there for a while. A parent looks at me like how could u let her do that. That parent scolds their child, "You do not go under there like Grace" while side eyeing me. Like Grace? I say to myself. I swallow a lump down. Are you blaming Grace? Sometimes I want to scream, "you can not discipline a neurological disorder!"<br />
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I know when things like this happen, most people can not wrap their head around my daughter. This is hard for me, because of this, some lack empathy for her. And my girl needs empathy.<br />
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Being a girl with ASD is tough, add aggressiveness and impulsivity the painted picture becomes more difficult for an outsider to process. In a room full of people who watch her melt down a huge part of the room say to themselves, discipline, spoiled, mean child. I can feel it. Their eyes burn through me as my daughter scratches my face or kicks me in the stomach or tosses a full cup of soda across the room. It's so hard to keep my heart from racing and to calm my daughter down when everyone's watching. I've learned over the years to block everything out and focus on my daughter's struggles.<br />
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Every mothers dream is to do "girl like things" with their daughter. No one pictures a mother restraining her daughter. A mother telling a school district my daughter will agress towards anyone who puts demands on her. A mother zipping up her daughter's bus harness. A mother covering up scratches on her face with make up. A mother making sure nothing is in the backseat so nothing gets thrown at her while driving. Society is not aware of this side to motherhood in an ASD girl's life. It's never spoken about.<br />
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I am not ashamed of my beautiful girl, Grace. She does not mean what she does, and I will never give up on her. And I will work with her as long as it takes to calm her down. She's worth every scratch, bruise, and scrape. She's funny, so smart. And on her good days she's so loving. She loves so purely and so innocent.<br />
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She's not a monster. She's not a bad kid. She's not spoiled. She's Grace. She is a girl with Autism<br />
Spectrum Disorder. She needs help navigating in a world that her brain can not fully process. She needs empathy. She needs you not to fear her or make her feel like she's a bad example infront of your kids. She loves. She needs your understanding. She needs your love. She needs acceptance. She needs above all AWARENESS.ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com1tag:blogger.com,1999:blog-4344878159418382034.post-38481014906535655772013-05-09T08:27:00.000-07:002013-05-09T09:16:44.885-07:00BillyIntuition. It was something I was born with. The intuition part of my brain developed at an early age. My brother Billy is severely disabled, the quickest way to explain is his development ranges from a 2-4 year old, he is also non verbal. Billy is also highly behavioral. He engages in self injurious behaviors and has a high threshold to pain. I always knew, from as long as I could remember Billy needed me. Oddly enough I never asked questions or judged Billy. I always true heartedly loved him, and just understood. Most of all I always knew he would be my responsibility one day. My parents any I never really spoke about it and they never asked me. They would never because I'm sure they flt it would be a huge burden. But to me, it's not. Taking care of my brother, my family, is not a burden. It's one of the reasons I walk this earth, I believe that. And having a daughter with Autism made that more clear to me. My intuition is what Billy gave me.<br />
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Empathy. I would say I possess something all humans need to have a touch of. Empathy. Watching my brother get so frustrated and bang his head on the wall until he bled or until the wall busted through. I learned empathy. This poor boy is so frustrated he has to hit his head on the wall to feel some sort of processing. Empathy. Watching my parents drag through their days after being up all night and still smile and laugh. Being empathetic is what Billy gave me.<br />
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Patience. Some say to me, "wow you are so patient". My patience comes from explaining to my brother a million times he can not go for a ride in the car over and over again as he would endlessly sign "bye byes in the car" over and over. Patience, when Billy would be banging his head or getting upset and I would watch my parents do everything in their power not to lose their cool and work through it with him. Now that I have Grace, I give her all that I got and always strive to be as patient as I can be with her. Patience is what Billy gave to me.<br />
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Love. Watching my brother love the little things in life like twirling a straw, the game show network, Elvis music. He whole heartedly loves people and things all discriminations set aside. After all the years and hardships my parents went through they still love each other and still hold hands. I love whole heartedly. My heart is filled with love and I'm not afraid to give it or show it. my relationships are all so fulfilling and beautiful because of the love i have for people. How to love is what Billy gave to me.<br />
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The list goes on and on. I could sit here and name everything my Angel Billy gave to me. He taught me so much and prepared me for life. Burdened? Never! If anything I owe him this, for all he has given me. It's my pleasure, it's the least I could do. My parents are reaching the age where they just can't do what thy use to. So Ernesto and I have decided its time to take the reins and start making<br />
decisions for Billy. I'm honored.<br />
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My brother is my super hero <3<br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com0tag:blogger.com,1999:blog-4344878159418382034.post-34855666275736106922013-04-08T17:24:00.001-07:002013-04-08T17:24:57.432-07:00My Daughter with ASD Hits me PART 2: There's Always Light in Every Situation<span style="font-family: Verdana, sans-serif;">We weighed out the Pros and Cons of Grace's behavior carefully. We came to the conclusion that she needed meds. We have done everything and more to get her where she needs to be. But let's face it the poor kid sleeps 3 hours a night, gets frustrated to the point of rage, and has so much trouble navigating her feelings. This was such a hard decision to come to. Honestly I am guilt stricken and feel like I failed...yet again. YEY parenting...ha ha.</span><br />
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<span style="font-family: Verdana, sans-serif;">The morning of the Neuro appointment happened to be April 2nd. I kept our business off the facebook fan page because I needed to gather my thoughts and the page was an escape to raise Autism awareness and do "blue like" things. How fitting the day we decide to get a prescription from the neurologist...it is Autism Awareness Day. It took Ernesto and me 2 hours to get her dressed and ready. She fought us every step of the way.</span><br />
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<span style="font-family: Verdana, sans-serif;">My Dad came with us to the appointment because Ernesto had to work. Grace was so manic and hyper and could not focus on anything. Thank God my dad came with us because 15 minutes in she lost her mind, running around and screaming. The nurse came in to get her vitals. I lifted her 45 pound fighting body onto the table. This is usually her favorite part. Not this particular day, she hit the nurse repeatedly. My chest became red with anxiety and embarrassment. While Grace ran up and down the halls with Pop Pop, I sat in the exam room and waited for the Dr.</span><br />
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<span style="font-family: Verdana, sans-serif;">It felt like forever, of course. I questioned myself over and over. Am I doing the right thing? If he doesn't come in 5 minutes it is not meant to be and we should just go. OK, if he doesn't come in 1 more minute we are leaving. Does she really need medicine? A minute flew by. I heard her noises echoing down the hall way. I had a whole verse planned out what I would say and ask. I looked at my phone...OK 30 more seconds and we are out of here. Yea We are out of here. Enter Neurologist, figures. </span><br />
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<span style="font-family: Verdana, sans-serif;">Honestly I do not remember anything from talking to him. He saw all of my scratches, I retold the events from Sunday. It all went so fast I asked a million questions he told me a load of information, gave me a prescription, examined Grace, and it was over. We went back to the waiting room, and Grace had a meltdown. The one thing that I did remember was he said we have to improve the quality of her life. The office is also a typical pediatrician office, so of course that side of the room just stared at us.We finally get her in the car, and I start driving. SLAM a full juice box hits me in the mouth and I almost crash the car. I do not even say anything to her because she was startled by the jerking of the car and loud bang when it bottomed out. The whole way home she tried to escape out of her car seat.</span><br />
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<span style="font-family: Verdana, sans-serif;">My dad waited with her in the car while I ran into CVS. As I waited on the drop off line, I replayed the whole day, I stepped to the counter handed the technician Grace's prescription and closed my eyes. She was checking to see if they had it in stock. I took a deep breath let out a sigh and I whispered to myself, "It is time."</span><br />
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<span style="font-family: Verdana, sans-serif;">We are reaching day 7 on new medicine, 1 dose in the morning 1 at night. Grace has slept 10 hours a night since we started the meds. Are meds for every ASD child? No. But they are working for us. She is not cured of course. But she is way more happy and way more easy going. I have noticed and increase in scripting. I am attributing that to the decrease in aggression. Major decrease. I have been charting her aggression, she is only hitting us 2-3 times a day lasting less than 30 seconds, where before we were getting hit NO EXAGGERATION 10-20 (or more if there is no school) times a day lasting 5-10 minutes. </span></div>
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<span style="font-family: Verdana, sans-serif;">Honestly, I feel like I am living a dream. Ernesto and Me smile at each other constantly watching her. She is so stable and focused (for her hehe) and just so calm. It didn't change her, it made her a better Grace. Her whole entire team at school reports she has made leaps and bounds in just one week. Of course it has only been a week, and I am still skeptical. Like when will this stop working? When will she need the higher dose? Is this the right thing to start so young? Every time I fill the oral syringe I second guess myself and push the lump down in my throat. I squirt it in her almond milk or her breakfast shake and stir it in. I watch her carefully as she sucks down the chemical and pray for a good day. So far so good. One day at a time right? </span></div>
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<span style="font-family: Verdana, sans-serif;">The first weekend Grace on her new medicine. We went out 3 days in a row and had not 1 transition issue. This is an example of an AMAZING WEEKEND :)</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com0tag:blogger.com,1999:blog-4344878159418382034.post-45479050424041010092013-04-07T16:43:00.001-07:002013-04-07T16:43:29.799-07:00My Daughter with ASD Hits Me<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> My daughter hits me. She has been hitting me since, jeez, a long time. I know it is out of anger and frustration. But, sometimes I just can not take it. She gets into these meltdowns and it is like she is not even there, like it is not her. She punches, scratches, kicks, bites, pulls hair, and throws anything she can. When she does this, for me, it is the saddest thing to watch, To see your daughter lose control of her entire being and just want to hurt who ever is in her path, because there is a connection missing in her thought process. And me? I feel powerless. There are times where is has gotten so bad I just let her lash into me with her nails. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We modified her diet about 4 or 5 months ago and we saw great changes, but up until last week we hit a wall, we only got so far. Last week she had off for Spring break, and she was 2 weeks post her surgery. The first weekend of her vacation she got a fever. Before her oral surgery her stim behavior was grinding her teeth, but now she is unable to grind. So she started licking her lips. That whole week she licked her lips until they were black. By mid week her lips were a mess and so was her behavior. She consciously could not stop licking her lips, it became a compulsion. She would lick scream in pain hit me then lick them again. I could not get her to bathe, change her clothes, brush her teeth, brush her hair, or sleep or eat for 5 days straight. By the 4th day I was in a fog from her screaming all day and all night, but still licking and biting her lips. We tried everything. I took her to the pediatrician, but they did not understand the severity of the situation and the obsessive stim behavior of it and gave us aquafor and antibiotics and sent us on our way. On top of all of this she had strep too. I was at a loss and just went a long with what she was doing. Her lips were now black.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Easter Sunday she took a 3 hour nap and I was relieved she was finally sound sleeping. She woke up from her nap in horrible pain. I could see it in her face. She was unable to regulate her internal and external environment. She licked her lips and screamed then hit me. I would leave the room, she would cry for me, I would enter the room she would tell me to get out. We did this for about an hour. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The pain got so bad she jumped up and just screamed out as loud as she could. Threw anything across the room she could get her hands on. I saw her pain. But there was nothing I could do. She would not let me console her or even touch her at this point. (at times like these we usually restrain her but I did not have it in me because of the amount of pain she was in). I saw something change in her eyes. There it was, that glare in her eye where she can not control her self and it gets bad. I braced myself. She came at me full force and scratched my arm with all five fingers, natural instinct pulled her hand away and tried to get her to stop. Mother of Autism instinct knew there was no stopping her and if scratching me gives her a little relief then so be it. I watched her grunt and scratch my arms, I took deep breaths as her nails scraped into, then down my skin. She moved to my neck ripped my chain, and dug into my neck. At this point I began to cry, For me? NO! For my baby, who I could not help. I felt helpless, there was nothing I could do. My arms began to bleed, and she spotted the blood. She looked me in the eyes in shock and began to cry. Her sweaty little body fell into my arms. I held her and rocked her and we cried. I held her as close to my body as I could. I could feel her heart racing a mile a minute. "I am sorry MOMMY i am so sorry" she yelped with tears running down her face. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After I calmed her I had this cool numb feeling running through my body. I just didn't feel right. I was fighting my human instincts to be mad and want to fight back. It was not sitting well with me. I called Ernesto at work. "Hey, you need to come home, everyone is alright but you need to come home." I cried, again, then hung up the phone. Ernesto came home and saw the look in my eyes and the sight of my arms and neck. His eyes welled up with tears and he just held me. I took a deep breath and explained as much as I could. At this point Grace had snapped out of it and seemed to be ok. He sat and played with her while I just sat in the other room and stared at the wall and thought, WHAT are we going to do?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">That night Ernesto and Me were laying in bed staring at the ceiling and we both knew it was time to really start considering MEDS.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">...to be continued...</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-80599095801962654742013-03-15T12:48:00.001-07:002013-03-15T12:48:54.690-07:00Silver Linings Continued<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Last Night I posted:</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #333333; line-height: 17.99715805053711px;">There is always a silver lining to life. With a special needs child comes a lot of hardships and struggles. Struggles that many people can not grasp. Sometimes you will explain things to others and they just can't wrap their head around it.</span><br style="background-color: white; color: #333333; line-height: 17.99715805053711px;" /><br style="background-color: white; color: #333333; line-height: 17.99715805053711px;" /><span style="background-color: white; color: #333333; line-height: 17.99715805053711px;">With that being said there are also upsides. There comes an appreciation for life. You learn to master negotiating. Even though on bad days your heart can ach</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;">e, but on the good days the smiles are real and the happiness you do feel is pure. You have achieved so much, you're not even aware. With every hard thing that comes your way you find beauty in it.<br /><br />Grace has sensory processing disorder, which with many super kids, it goes hand in hand. Every night I rock my 47 pound girl tight to my body for almost an hour, standing and swaying back and forth. I make sure I don't skip a beat to ensure her she is secure. I also sing a list of routine songs over and over again. Even when my knees can not do it anymore I some how am able to rock her on through. Every night when she finally drifts off to sleep, my eyes well with tears. My heart beats out my chest. I always hold her a little extra long just to breathe in the moment. I watch her sleep. I feel so lucky that my 5 year old girl still needs me to hold her close to me to feel secure and sleep. I cherish this. I am thankful for this. Silver linings...pieceloveautism</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span>
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">With that being said I realized there are so many more good things that can come out of this journey so I have devised my own list.</span></span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">SILVER LININGS of being a Super Mom</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span>
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">1. no drama, there is not time for it. Life is easier this way.</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">2. Being able to pull positive out of any negative situation</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">3. Laughing at the small stuff</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">4. Being able to pull it together on 2 hours of sleep</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">5. Would be really successful in a hostage negotiating, bc my days are filled with negotiating and sassing</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">6. I can spit out 27 acronyms in 13 seconds and define them all in 25 seconds</span></span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">8. inside jokes with spouse NO one will ever understand</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">9. Even though she is 5, her social level is delayed so I get to keep my baby a little longer <3</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">10. the people who are in my life on a daily BASIS truly love us and we are so lucky for them</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">11. full day of pre school</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">12. when I find time for a mani pedi, I can not even describe HOW amazing I feel after</span></span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">19. MELT down manager, this has given me the power to be out in public and cool typical adults down in line at the food store</span></span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.99715805053711px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">20. YOU ALL my readers MY SUPPORT you all inspire me. If I didn't have Grace, I wouldn't have you <3</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;"><br /></span>ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com0tag:blogger.com,1999:blog-4344878159418382034.post-38728790442561150772013-03-10T14:47:00.002-07:002013-03-10T14:49:51.227-07:00This MOM<span style="font-family: Arial, Helvetica, sans-serif;"> I have not written anything in 2 weeks. There is a lot to explain the reason for my absence from the thing I enjoy most, Writing. We are moving out of the room we live in to our very own apartment, school is kicking me around, and the other thing is hard for me to talk about, which is odd. I usually am very open and it is easy for me to express my feelings, especially the tough ones.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Out with it. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This coming Wednesday The Boss Lady is having surgery, on her teeth. She has to be put to sleep totally to have her mouth worked on, because it's a mess. The part that kills me the most, is this all could of been prevented. They are definitely pulling her top front teeth, all 4 of them. The surgeon has not decided what he will do for the molars, the other teeth, and gums until the actual day of surgery.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Rewind with me. Grace is 15 months old and getting ear infection after ear infection. It took 2 people and battle wounds to get her shoes on. She wasn't speaking. She wasn't even present and when she was she was battling us on getting dressed, transitioning, and BRUSHING HER TEETH. Everyday for everything was a constant battle. I threw in the white flag, I SURRENDER, for teeth brushing. If I could go back I might of worked a little harder and found the strength to hold her down two extra times a day to get her teeth brushed, but I didn't have it, Ernesto didn't have it.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Trying to get her to speak and communicate, was the first thing on my mind. Autism Spectrum Disorder was on my mind. Her future was on my mind. What time each therapist was coming was on my mind. IEP meetings were on my mind. Somehow along the way dental hygiene just took the back burner. How was I able to research Sensory Processing Disorder, buy a $200 weighted blanket, but neglect her teeth?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As a stim behavior she grinds really bad...really bad. The grinding made everything 10 times worse. </span><span style="font-family: Arial, Helvetica, sans-serif;">We are talking to her about the surgery on Wednesday but she is not OK with losing 4 teeth or more and is having a hard time generalizing. For now we have stopped discussing and whatever will be, will be.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I know I am going to love her little toothless smile, and luckily it is her baby teeth. She is so strong and will be fine, I know she will. She has proven that to me thus far on many occasions. But I am so guilty. She is going to have to endure this because of me, because I failed her, again.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Another failure to add to the list. Another thing I could of prevented and gave up on. Another reminder things are not normal. I never thought I would be the Mom who let their kids teeth rot...I wasn't suppose to be this Mom. But, I am this MOM. </span>ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com7tag:blogger.com,1999:blog-4344878159418382034.post-52107415901062224852013-02-26T11:38:00.000-08:002013-02-26T11:38:09.733-08:00A Different Side of Me<span style="font-family: Verdana, sans-serif;">Fades, Fading</span><br />
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<span style="font-family: Verdana, sans-serif;">pretending to be present, smiling, screaming on the inside, forced hugs and kisses, pushing to have patience for her, pushing through my day for her, making our beds, picking up toys, crying in the bathroom, pushing anxieties and fears away, touch is tolerable, breathing, deep breaths, sleeping while she is at school, pushing myself to shower, pushing her to keep a routine, folding laundry, cleaning the bathroom, tingling before numb, ignore most calls, music helps, pushing all I have for her, I'm slipping</span><br />
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<span style="font-family: Verdana, sans-serif;">..."I'm so tired of being here"...</span><br />
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<span style="font-family: Verdana, sans-serif;">gone, detached, staring, watching myself unravel, numb, tired, sleep, do the least necessary for her, no patience, she wrecks the house, I leave it wrecked, numb, sleep, tired, irritated by touch, irritated by sound, leave the toys, screw the beds, screw the laundry, screw the shower, I can't breathe, sleep, bed, meals if we must, all sounds like nails on a chalk board,alone, fustrated, cry for her, guilty because she has to live this too, apologies to her while she sleeps, my tears hit her cheek. I am sorry Grace Mommy will be better.</span><br />
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<span style="font-family: Verdana, sans-serif;">"...If you have to leave, I wish that you would just leave..."</span><br />
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<span style="font-family: Verdana, sans-serif;">Light, Brightness</span><br />
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<span style="font-family: Verdana, sans-serif;">here, present, elated, SO HAPPY, patience, routine, cleaning, organized, HAPPY, loving, hugs and kisses a must, feel everything, living, life, breath comes with ease, HAPPY,make lists, set goals, embrace her, play with her, engage with her, lay with her, brush her hair, bake with her, hold her, watch her sleep, cry, my tears hit her cheek, Mommy is here Grace, Mommy is better, Mommy is HAPPY</span><br />
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<span style="font-family: Verdana, sans-serif;">the guilt sets in...</span><br />
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<span style="font-family: Verdana, sans-serif;">..."Your presence just lingers here and won't leave me alone"...</span><br />
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<span style="font-family: Verdana, sans-serif;">I have been battling these waves of emotions for years. This is the worst it has ever gotten. If you must know or haven't figured it out, I am talking about Bipolar Disorder. It is very real and very hard to talk about. As a mother battling this constant roller coaster I am not only ashamed of this, I also do not want people to know my pain and my struggles or to see my inner hardships. Why should I burden you with that? I hate to admit that I can be this type of mother sometimes. I feel like a monster, a horrible person. But this is who I am, and I fight it as long as my mind, body, and soul can. It is something many people do not talk about. It is something we try to avoid. Because it is raw, unhinged, and very dark. But I wonder how many are you reading this, nodding your head "YES this is me," or "I tend to do this"...</span><br />
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<span style="font-family: Verdana, sans-serif;">..."you still have all of me"...</span><br />
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<span style="font-family: Verdana, sans-serif;">this illustrates it all, a song to Bipolar Disorder, from your prisoner</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com8tag:blogger.com,1999:blog-4344878159418382034.post-4776815371489217522013-02-15T09:57:00.001-08:002013-02-15T10:08:22.458-08:00My Weaknesses<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">What a morning. What a day, What a week. What a month. What a year. What a life. This morning wasn't all that bad, but maybe it was the straw that broke the camel's back? I got into an argument with a friend over "going out". I don't even have the energy to shower, let alone go out on a days notice. Is that selfish? Sure. I am very selfish. But for good reasons. I selfishly want to be with my daughter all the time. I selfishly rather hang with people who have kids so she can play with their kids. I selfishly rather stay in on a Saturday night and watch TV. I am selfishly obsessed with my face book fan page and blog. I can probably go on and on.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Right so back to this morning. We have not been sleeping because Grace has trouble. She gets up and down all night or wakes up at 1 am and stays awake until 7 and then does a 2 hour power nap. My days blend. My sanity is writing. So this morning, Ernesto was running around trying to get ready for a grueling 14 hour shift. I was contemplating sending the Boss to school or not. The check engine light was on in the car AGAIN. My dad was calling to take the car to be fixed. Her school was calling. I was trying to email my professor. Ernesto couldn't find his belt. Boss was screaming she wanted mickey mouse pancakes and circle pancakes over and over. I was stepping over the "middle of the night's mess" she made to get around. At one point I was just running around in circles with a whisk, a mixing bowl, and a Sharpee in my hand. Everything dropped and I shut my eyes tight. I felt the walls closing in. I did not want them to see I was losing it. I went into automatic mode. Made pancakes, found his belt, kissed him off to work. I knocked on my brother in laws bedroom door and said, "watch Grace, My Dad is taking my car to be fixed, I have to go pick him up". I brushed my teeth threw on jeans and ran out the door.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When I got into the car my heart was pounding a mile a minute. I could not even see. I put on the radio and fumbled to find my Christian Rock station, the powerful inspirational songs usually do the trick...NOTHING WAS WORKING...I just drove, the GPS said it took 30 minutes to get there. SO on I drove, like a maniac. Listing all the things I hate. I never hate! At this moment I was hating hard. I hate that Ernesto works so many hours. I hate that Grace hits me. I hate autism. I hate we have no where to live. I hate hate hate. Then I got stuck by someone who crashed into a tree. And I was pissed at her. She did not even do anything to me...she held up traffic for about 15 minutes...but really, did I have to waste energy on being pissed at her? OH but I did. I still had my christian music on, as I was waiting behind this "idiot" who needed her car towed.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And there he was my "marker moment". His name is Jason Gray he is a christian rock singer. Get this. He has a speech impediment. As I listened to him do a live interview and struggle to speak and stutter, my shoulders relaxed, and I just listened. He had such a strength in his voice and pulled me right in. He spoke how we need to be open about our weaknesses and turn them into something more. </span></div>
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<span style="background-color: white; font-size: 12px; line-height: 17px;"><span style="font-family: Verdana, sans-serif;"><b><i>“When I’m willing to work out of my weakness, there are more chances for God to show up and for the unexpected to happen,” Jason explains. “My strengths—which are really quite modest—are limited to me, but with my weaknesses the possibilities are boundless.”</i></b></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When he said that I just cried and cried and cried, I guess it turned into sobbing at that point. I was right there with him hanging onto his every word. His stutter melted away and I did not even hear it, because I heard and felt the power of his words. This beautiful person, enlightened me. All of a sudden I wasn't mad, I was at peace again. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I want to share my weaknesses with you because I want to be open and freed from them so here it goes...</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">1. My self esteem is something I struggle with</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">2. I have one vocal chord and because of this to speak in front of crowds I turn red</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">3. I have words of wisdom on a key board but face to face it takes me longer to process</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">4. I let grace write on the wall when I am to tired to deal</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">5. I sometimes lie about how I really feel to make others feel better</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">6. I hold things in</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">7. I have hit Grace on her Butt and hand a handful of times in the millions of times she has hit me</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">8. I have had a professional tell me I might be bi polar</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">9. There are days I don't get out of bed or go back in bed</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">10. I have a selfish all about me side, that scares me and I supress</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">11. I have been in dark depressions</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">12. I have sent Grace to school with out her teeth or hair brushed because I couldn't find strength to hold her down</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">13. I comfort eat</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">14. I imagine life in other scenarios</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">15. I save everything until the last minute</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">16. It is really hard for me to stay organized</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">17. I have an addictive personality</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">18. I can be flakey</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">19. there are days when I let Grace do whatever she wants (I pay for it later)</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">20. I have been avoiding doctors appointments for 2 year even though I am so suppose to get myself checked ever 3-6 months</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">That was very hard for me to write and I ask no one to pass judgement on me, and just be open to the fact that we all have weaknesses and maybe think about your own. I am so thankful this man, Jason Gray, came onto to the radio today and snapped me out of my fog of anxiety and confusion.</span></div>
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<span style="background-color: white; font-size: 12px; line-height: 17px;"><span style="font-family: Georgia, Times New Roman, serif;"><b>"I wanna live like there's no tomorrow. Love like I'm on borrowed time. It's good to be alive. I won’t take it for granted. I won’t waste another second. All I want is to give a life well lived to say, “Thank You.”'</b></span></span></div>
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<a href="http://www.klove.com/music/artists/jason-gray/" target="_blank">Click Here to Learn More About Jason Gray</a></div>
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com13tag:blogger.com,1999:blog-4344878159418382034.post-15423257967593397392013-02-14T16:33:00.000-08:002013-02-14T18:45:21.077-08:00Truth is...<span style="font-family: Verdana, sans-serif;">Dear Society</span><br />
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<span style="font-family: Verdana, sans-serif;">My name is Kelly and I have a 5 year old Grace. She has Autism Spectrum Disorder. Do you know what that is? In short people with Autism Spectrum Disorder see the world differently and process things like external environment differently. I am writing to tell you that I am tired of accommodating you and your feelings to our situation. I am tired of people shaking their head at my child on line at staples because she is scripting or having what you would label a "temper tantrum". It is actually called a meltdown. I am tired of staff members at a store reprimanding my daughter for something she can not control. I am tired that bringing my daughter into a store is stressful enough and YOU add onto it. The Autism Community is tired of it all. How is it that millions of people can have a face book account and access the Internet from their cell phones but have no clue what Autism is, or have no care to. In this day in age there are no excuses for not educating yourself. The ignorance has to stop and the acceptance has to start. Us ASD parents have accommodated your feelings and opinions for so long. As humans we are naturally able to accommodate, so let us into your world. I am tired of this universal isolation we all feel. Like it or not, it is our Autistic kids' society too, and they have just as much right to be on line at Staples as you do. For a child to have a disability it does not always have to be blatantly in front of your face. Educate yourselves. Instead of reading what Kim Kardashian had for breakfast, Google Autism. </span><br />
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<span style="font-family: Verdana, sans-serif;">So the next time you see the 5 year old screaming and throwing things at a very tired Mom, before you go to judge say to yourself hey MAYBE that child has Autism Spectrum Disorder. When you see a child running away from their dad or is spinning in circles waiting on line, hmm MAYBE it is Autism? Saying something negative or reprimanding the child, you may think you are helping but you are not. You actually add stress to the situation, even if you think the child is endangering themselves, WE GOT IT, we can handle it. We do this everyday all day. Just smile and keep it moving. It is time for you to accommodate us. It is time for you to understand and accept what we go through on a daily basis. So wake up and read some facts. Autism is growing in numbers every year, so it is the time for awareness to grow. </span><br />
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<span style="font-family: Verdana, sans-serif;">Truth is I am just so tired of it all.</span><br />
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<span style="font-family: Verdana, sans-serif;">Sincerely,</span><br />
<span style="font-family: Verdana, sans-serif;">A tired mom of Autism</span><br />
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<a href="http://autismcenter.org/autism_faq.aspx">Learn More Click Here</a><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-12376652538688968872013-02-11T21:18:00.000-08:002013-02-14T18:43:08.944-08:00A 4 Yr Old With Empathy<span style="font-family: Arial, Helvetica, sans-serif;">The Boss is officially 5 years old. We had a small family gathering because of the whole being displaced situation. She has many friends at school, kids like her who she has made bonds and connections with. My biggest fears in life is Grace surviving in the typical world. There is only so long that I can protect her and keep her away from the typical world. Boss is not a boss around typical kids. It is actually heart breaking to watch, she escapes reality a bit. You can see her confidence level decrease. So, this is why I worry.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">One of my closest friends, she is more like a sister to me, has a daughter Reilly, Reilly is 4. She is the typical child with a capital T. She loves princesses, dress up, pretend play, girly conversation, drawing flowers, and dolls. Most of all she loves Grace. She just understands her with no explanation. I have never met a 4 year old with empathy. Reilly has empathy and never faults Grace for anything she does. Reilly has seen Grace in a full meltdown with aggression and screaming. Reilly HURT and CRIED when she saw this, but it was for Grace. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Reilly is such an amazing influence on Grace, vice versa. So we take Reilly as often as we can. Reilly has mentioned to me a few times that Grace is special, and she thinks differently. Mind you her mother has never said anything to Reilly. She just has this natural intuition and beautiful soul. If I am trying to get Grace to transition, I will sometimes say things that aren't true, and Reilly the 4 year old winks at me because she knows what I'm doing. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I love to watch them play. Reilly thinks Grace is hilarious when she scripts. She is actually amazed Grace can recite shows, and I will see Reilly racking her brain trying to figure out what show or movie she is scripting. Grace will only interact up to 5 minutes then go into solitude. Reilly knows this but still stays by her side and parallel plays with Grace, even though she has surpassed that. She never tells on Grace and has never once complained about Grace. How lucky are we to have found this patient, empathetic, loving girl?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">At times when I have Reilly, I fight back tears and that nagging lump in my throat. I get mixed emotions because of the interactions I have with her. I am able to rationalize with her. I have these detailed two way conversations about the past, present, and future. It is amazing. I cherish it and tuck it away in my heart, sometimes tap into it when My Boss has her unclear opaque moments. When I watch Grace struggle I watch Reilly help her along. Super Daddy and me exchange infinity smiles when Reilly and Grace play. When Grace fades off, Reilly gets in her face and makes her pay attention. Reilly brings so much joy to Grace's life. I even use seeing Reilly as a reinforcer. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When Grace has to leave Reilly's side it use to be a really emotional even they would both cry and scream. Until one day my dear Reilly whispered to me "I am going to be strong for Grace and not cry so she has an easier time" When I got in the car with Grace that day I cried the whole way home and rubbed Grace's leg and told her how lucky we were to have Reilly in our lives.</span><br />
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com5tag:blogger.com,1999:blog-4344878159418382034.post-21715441840357096762013-02-06T19:34:00.000-08:002013-02-06T19:41:37.129-08:00She Was Sent to Rescue Me<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Me Dear Boss Lady, you are turning 5 in just a few hours. I am sitting here watch you peacefully sleep. I am thinking back on the last 5 years and how far you have come. Looking at you my heart fills with pride and love. I can not believe you are 5. When I was pregnant with you a good friend of my mother's told me to cherish every moment, and I am so thankful I did. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">You have been working so hard, harder than any 5 year old should. Between all these years of therapies and school days, you seem to be able to still laugh and have true happiness.You never complain about any of the work load that is put on you. You look at everyone in this world with no biased and believe in that equality we all should. You have this light in you that when you enter a room no matter what you are doing attention is put right on you. You never lie, your honesty is something I admire most about you and how you do not care what other people think.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am proud of you in so many ways. You have brought a love to the entire family that I did not even think was possible. You saved me little girl. I was lost and when I first met you I found myself and learned how to really love for the first time in my life. You are the reason I have strength. You are the reason I am the woman I am today. Each day I work to be a better person and do great things, because of you. You are the just plain and simply MY REASON and MY PURPOSE. As every year you grow older and older I will still be by your side guiding your light and doing everything and more you need me to do. I love you so much Grace Marilyn make your way in this world, reach for the stars and achieve all of your ambitions. I hope you have a happy happy Birthday, my love.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">My song to you Boss, by Martina McBride <3</span><br />
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<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes, </span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I am a hero,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I am strong and wise, </span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">And I know no fear,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">But the truth is plain to see,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">She was sent to rescue me,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I see who I want to be,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes</span><br />
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<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Everyone is equal,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Darkness turns to light,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">And the world is at peace,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">This miracle god gave to me,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Gives me strength when I am weak,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I find reason to believe,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes</span><br />
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<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">And when she wraps her hand around my finger,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">How it puts a smile in my heart,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Everything becomes a little clearer,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I realize what life is all about,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">It's hanging on when your heart is had enough,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">It's giving more when you feel like giving up,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I've seen the light,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">It's in my daughter's eyes</span><br />
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<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">I can see the future,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">A reflection of who I am and what will be,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">And though she'll grow and someday leave,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Maybe raise a family,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">When i'm gone I hope you see,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">How happy she made me,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">For i'll be there,</span><br />
<span style="background-color: white; font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">In my daughter's eyes</span><br />
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com4tag:blogger.com,1999:blog-4344878159418382034.post-18672568059826656042013-02-05T17:09:00.001-08:002013-02-05T17:09:28.374-08:00Three Working Spokes<br />
The Boss is laying down and Super Dadda is doing Daddy things like paying bills. We had a moment tonight and it was something very exceptional. Boss has trouble with emotions. When she is over come with any emotion her little body does not know how to process it and she immediately resorts to hitting...me usually. At dinner she was woofing down her GF mac n cheese. Super Dadda and me were standing in the kitchen area and we hugged and just did a natural sway, kind of like dancing. I looked over at Grace and she was smiling, it was a smile of admiration and dignity. I looked away fast because I knew she would feel embarrassed by me catching her have an emotion. I did not look away fast enough, she saw me and bee lined in my direction and punched me in the stomach.<br />
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Super Dadda and me went to lunch today and were so refreshed when she came home. We talked about things other than Autism. It was nice. We had a really good after noon with her,too. She was rather compliant and had minimal behaviors. When I sat down and decided to share this with you all, I realized the energy between Ernesto and me really do impact here. Him and I are always good, but today we were extra extra and it really reflected on her. We both were there with her for dinner, bath, and bedtime. She was so happy and loving every second of it. My little Boss. <3 We were being really silly at dinner and took this picture.<br />
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Even though our kids have disabilities they are still in tune to our emotions and energies. Sometimes I forget that even though she can not express certain things, she still may be feeling them in her own way. I know now I have to be more aware of my interactions with Super Dadda in front of her, because she IS watching and she IS feeling. Maybe not in the way we do, but it is there. It is there for all the super kids, they just process it differently. I will tell Super Dadda I love him more often, hold his hand during a family movie, and we will like we always have snd show the utmost respect for each other.<br />
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My parent trainer described a family unit as a bicycle wheel. Each member of the family is the spokes. We have three spokes, Boss, Super Mama, and Super Dadda. If one spoke is off or broke the wheel can not function properly. It makes so much sense.<br />
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Since I can not find a quote that I like, I leave you with this song. A song Super Dadda and me identify with for our journey with the Boss.<br />
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ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com1tag:blogger.com,1999:blog-4344878159418382034.post-58030642602041877392013-02-04T07:52:00.000-08:002013-02-04T07:52:05.534-08:00Unexpected Co existence <br />
<span style="font-family: Verdana, sans-serif;">I saw a Muslim woman today walking across campus in the far distance. She was timid but held her head up high. She had the whole head dressings and the draping attire, although her face was exposed. As her clothes blew in the wind I watched students walk by her and stare as hard as they could. Was it out of ignorance? Some I can say fully were. Some people just stare at things or people that are different. I have learned not to stare. Over the course of my life I believe you look ignorant doing so. </span><br />
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<span style="font-family: Verdana, sans-serif;">I found her to be so strong to attend a predominately American Cultured college as a Muslim woman and hold on to her religious beliefs. Brave. Like my daughter Grace, so brave to be herself and not care what people think. I envy this about Grace and this particular Muslim Woman.</span><br />
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<span style="font-family: Verdana, sans-serif;">As I slowly approached her, I had a thought. I knew at that very moment how she felt. To feel different. To feel misunderstood. To feel out of place. One look or glance her way people automatically form assumptions or a quick judgement on her. It is how I feel when Grace scripts in front of people I do not know, or when she is over stimulated and melts down in public places, or when she throws items across restaurants. </span><br />
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<span style="font-family: Verdana, sans-serif;">As I came closer to her, I mustered up confidence which I lack in these types of situations. We walked parallel towards each other, my nerves set in and I inhaled to slow my heart. I smiled a smile of understanding and care. I opened my mouth and said, "Can it get any colder out here?". Her smile grew big and I saw her shoulders relax. We both laughed and just passed through. It was the smallest interaction. But it made a difference in her day and a huge difference in my life.</span><br />
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<span style="font-family: Verdana, sans-serif;">I never in a million years thought my experience and life with Autism would co exist with a Muslim woman passing by me on a college campus. In the course of 3 or 4 minutes my view on life is a little different and my heart is bigger.</span><br />
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<span style="font-family: Verdana, sans-serif;">"Good judgement comes from experience, and a lot of that comes from bad judgement"</span><br />
ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3tag:blogger.com,1999:blog-4344878159418382034.post-83653780078602428092013-01-31T21:30:00.001-08:002013-01-31T21:30:28.420-08:00'Tis the Season for Your Meeting<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">'Tis the season for your meeting....</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So here we are in that time of year that all of us super parents dread. I........E.......P........MEETINGS. Most of us stress probably way to much because if you really think about it, there is only so much you can control. I found myself in a routine of "behaviors" if you will, before my meetings. So here is what I do, maybe it will help you :)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">A few days before I listen to calming music all the way through until morning of the meeting.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I also say as little as I can to Super Daddy, bc when tension is high it is very easy to get into a blow out (about nothing)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">In our experience every meeting, Super Daddy and I feel it is best to have 1 parent as the dominant speaker and the other parent chime in when necessary ( it is always me, he is moral support)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I gather my thoughts and write down what I will say, believe it or not, I practice in the shower</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I pick out a recent photo of the boss lady to bring to the meeting, so they can put a name to her face</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I always speak to her current teacher and therapists so we are all on the same page</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I bring every packet from the previous meetings with her diagnosis and other valid information (this shows preparedness and efficiency on the parents part)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I always read up on up to date terminology and try to speak as clinical as I can but still stay grounded as a mother speaking of her child</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I love to look up quotes that inspire me and affirmations, I feel this gives me strength and confidence</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Every meeting I have been to, I wear red, in 7th grade Mr Corrado my social studies teacher said red was a color of power and dominance...so I do it, and so far so good (knock on wood)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I bring a coffee or water, it inhibits me from tapping my pen, twirling my hair, or doing any other nervous quirks</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I always shake the hands of everyone in the room as I walk in esp the head honcho at the head of the round table ;) a firm hand shake and some eye contact shows you mean business</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I always walk in as optimistic and light hearted as we can be, to set a positive energy in the air</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I try not to go in on an empty stomach so my brain is firing </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">While waiting to go into the meeting I sing a fun song in my head to relax my body and detach so my anxiety level stays low</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">While talking about the Boss I make sure I address everyone around the table and try not to look down too much on my written prepared speech</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">If things get heated and there is a sense of conflict, Super Daddy reels me back in by either lightly touching my leg or giving me a positive glance</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When the meeting ends we always thank everyone who was there and close with another nice firm hand shake.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I hope these things help you or give you a sense of strength. You are all so strong and marvelous. Being an advocate for your super kids can be so hard. I wish you all the best of luck in your meetings this year and your future meetings to come. Always have faith, courage, and love in yourself and you will be the best advocate you can be.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"an act of courage is always and act of love"</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com4tag:blogger.com,1999:blog-4344878159418382034.post-81750089258292604242013-01-29T15:35:00.000-08:002013-01-29T16:05:36.377-08:00Make Room for ASD<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is something I have wanted to write about. But every time I start to I feel like I may offend people in the special needs community. I feel as if I am complaining about something I shouldn't. There is the typical world and the atypical world. And we are a minority in both. We have one foot in the typical world and the other in the atypical world. Do you know what I am talking about? Autism, pdd-nos, Aspergers, verbal ASD children.(these all and many others apply)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Boss Lady's disabilities are not concrete if you glimpse into my world for 3 minutes on a good day you would not suspect a thing. If you glimpse in on a bad day you would see what I was talking about. This may be an internal thing, but I feel like there are times I have to prove Boss Lady's Autism to people.<i> </i>You may think this is demented or berserk but there are times in front of a certain company of people, I feel a sense of relief when her behaviors peek through. SICK RIGHT? I think many parents in my position feel the same way. I am a bit conscience stricken of this feeling. It is for the people who tell me she is fine or JUST DO NOT GET IT.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am tired of the school district saying "But she scores so high cognitively and is verbal" That is probably one of my most hated things said to me. I can not even celebrate my daughter's brilliance because her scoring high cognitively means she may lose services. So a part of me has to be concerned if she is scoring too high. Before she was diagnosed she actually lost special ed services because she was "scoring so high", let me point out she still was not answering to her name, she was not pointing, and she had a lot of other issues. But because the monthly test, that is not designed for all children, said she was cognitively FINE. Yes she could list ever color,shape, and identify numbers and letters. The picture was bigger than this and still is. Why aren't different tests devised for children like her? It does not make any sense to me.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is so much more to ASD than cognitive functions. There is behavior, motor skills, social skills, sensory processing disorder, which is not even acknowledged as a true disorder. Yes she scores high cognitively because part of her Autism is a great memory. They are little tape recorders! She retains a lot of information, but a lot of this is just spitting out the recorded information. The amount of absorption is unknown.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I was at a birthday party recently and a mother of a typical child, who is in an inclusion class with a handful of children that are on the spectrum, tells me that the Boss does not look autistic and I should not tell people she has autism. I am not ashamed of her or her ASD. Right then and there I realized there is so much more that needs to be done with in the ASD community. These kids are being misplaced in schools and schools are not educating the parent population or the typical children on ASD. It's a hush hush topic. We are not allowed to be proud or open about our ASD kids in the typical world, but the school districts forces ASD kids into inclusion classes and into this world. The kids on some occasions get bullied or the regular education teacher does not handle the ASD child properly and the child "explodes" and then is sent back out of district. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Now the child is in a school for special needs, and she begins to score high cognitively in her new school. She has no visual disabilities. Other parents wonder, why is this child even here? She looks totally fine. and so on. I feel unpleasant even opening about this and I feel bad comparing myself to a mother who has a child who is severely disabled. Why should I complain, sometimes Grace's issues seem so much smaller to me in comparison to many in the special needs community. I read a blog by NT mom, and I identified with something she said. She explained how ASD is on the outskirts of the special needs community. Where do we stand? Where is Grace's place in the world?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is a continual battle for us on this part of the spectrum. I am always wondering what is best for Grace. Second guessing every decision I make for her education. I have to fight for her and her diagnosis, especially when I am in the presence of uneducated people. The numbers of ASD are rising but for some reason the awareness level is so trying. If the school districts want our ASD children in district they need to not only educate our children but educate everyone else who will be around them. Our kids work so hard endlessly each day to cope with our world. Is it too hard to ask for the Typical world to work to fully understand and accept the ASD world? </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"What you deny or ignore, you delay, what YOU ACCEPT you conquer."</span><br />
<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com10tag:blogger.com,1999:blog-4344878159418382034.post-84668360810790626852013-01-21T19:58:00.001-08:002013-01-21T19:58:22.974-08:00I have been meaning to write you<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHELQVvNtXg1vRZ5pUGkq0NuBRwUEJbyXlmyKsUHaGPFcb6il0sZ_rPPyBl1Ka6sLoEtZ-0Q6qRZdJ2KzKxApzT_fh1x7Xb6NFDHZpTGoMsIr7YBXxBosf4XPOHjRcmZ1u-Tg_AUTNVUEh/s1600/sib.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHELQVvNtXg1vRZ5pUGkq0NuBRwUEJbyXlmyKsUHaGPFcb6il0sZ_rPPyBl1Ka6sLoEtZ-0Q6qRZdJ2KzKxApzT_fh1x7Xb6NFDHZpTGoMsIr7YBXxBosf4XPOHjRcmZ1u-Tg_AUTNVUEh/s200/sib.jpg" width="200" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">Dear Sibling,</span><br />
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<span style="font-family: Verdana, sans-serif;">I have been meaning to write you. You see I am a sibling just like you. But I am all grown up. I am writing you to let you know it is OK to feel sad, upset, frustrated, jealous, or anything you feel. Trust me I have been there. Do not let those feelings take over what a beautiful person you are. Feel them, identify them, accept it and move on. You see sibling, you have been chosen to do one of the most special jobs anyone can do on this earth. You are even more special than your parents. You have a heart made of gold, a soul full of patience, and a mind that can take on the world.</span><br />
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<span style="font-family: Verdana, sans-serif;">God has chosen you to be the light of your family. You may not know this but you are the one who holds it all together by just being you. The little things you do for your parents, the way you help them. How you have instincts and intuitions like no one else. Sometimes things for you have to be put on hold. This can hurt, I know. But it is because you are strong, you have strength deep inside of you, that you do not even know you have. Trust me it is there, and you will feel it when you need it the most.</span><br />
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<span style="font-family: Verdana, sans-serif;">Please know your parents love you more than you can even imagine. They also feel so blessed to have you. They feel lucky to have you and they barely need to worry about you because they know how incredible and marvelous you are. You are capable of anything so grab life by the horns and do great things. Anything you do in your life you will shine because of the path behind you.</span><br />
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<span style="font-family: Verdana, sans-serif;">Always love your special brother or sister. Always show them all of the care in the world. Always guide them. Always protect them. Always be there for them. If it ever becomes too much sibling, which it might, talk to someone. Never be afraid to express your feelings. I am always here for you sibling, I have done this before and if you need help I am here for you.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRstwTjam8u7pxIS0T7YZrnxFvU-gNgEvFLMgw_Px2uz7Han4CjK_p5EayAVuRvc6V9GDzPpkpRCt6-tXmblVPech1ByDiil9IcE5Cl39B0eFLryM4dunsuYMZBGWuxJ9-nsfulPYfmFQA/s1600/sibbill.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRstwTjam8u7pxIS0T7YZrnxFvU-gNgEvFLMgw_Px2uz7Han4CjK_p5EayAVuRvc6V9GDzPpkpRCt6-tXmblVPech1ByDiil9IcE5Cl39B0eFLryM4dunsuYMZBGWuxJ9-nsfulPYfmFQA/s200/sibbill.jpg" width="200" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">In your adult life you will notice people sweating about the small stuff. You will laugh to yourself and say, "if they only knew". You will have this way about you, where bad stuff will happen and it will be easy for you to move on from it. You are ahead of the game and always will be. People will admire your journey and your strength. The way you will love and feel is magnified and for this you are lucky. Never lose this part of you. Shine on sibling, shine on. I promise you it will get easier. I promise you.</span><br />
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<span style="font-family: Verdana, sans-serif;">Love Always,</span><br />
<span style="font-family: Verdana, sans-serif;">Another Sibling</span><br />
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<br />ADVENTURES on the Spectrumhttp://www.blogger.com/profile/02423640823174623639noreply@blogger.com3