tag:blogger.com,1999:blog-8077151913672187133.post8959311942924946444..comments2024-03-28T15:04:45.404-07:00Comments on life with greyson + parker: perfect parkermommykellyhttp://www.blogger.com/profile/07697924681816487574noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-8077151913672187133.post-78240526947364297132013-12-16T00:18:07.953-08:002013-12-16T00:18:07.953-08:00Hello Chrissy, I first saw your blog several month...Hello Chrissy, I first saw your blog several months ago on the front page of the Fresno Bee. Greyson's story caught my eye because my first real job ever was working with children and young adults with super powers. It was really, really emotionally draining (from the constant worry of making sure I was protecting my beloved clients as their eyes, ears, and voice) and also extremely emotionally-fulfilling as I saw my clients grow in leaps and bounds over the years. I would have to say that I loved working with children with autism the most because of their spunk, quirkiness, & just plain awesomeness. Never let experts place limits on what your children can do in life and never take all they say as fact. To this day, I refuse to acquiesce to the experts' belief that certain behaviors such as arm flapping & face rubbing are "maladaptive" and "should be corrected." We haven't even begun to understand the function of the human brain in all its complexity so we really can't place labels on body language. My beautiful clients often used arm flapping to express excitement (over their favorite computer games & tv shows), face rubbing to show love, and impromptu head locks to give hugs. Where I worked, we never told them they needed to stop or that this was wrong, we just tried to help them develop new ways to communicate. In the near future in Fresno & Clovis, I hope to see more of the community inclusion programs that exist in the Bay Area. For example, I also enjoyed being an activity leader in the inclusion program of a Bay Area public summer camp. Imagine 50 kids of all abilities mixed together-going on field trips, doing arts & crafts, swimming-a place where all kids can be just kids and play and grow together. I really hope something like this comes to our local recreation centers soon!! <br /><br /><br />And in the longer term, I would love to see a rehabilitative care home much like the one- http://www.buildhouse.org/ where I first learned about all the different super powers in the world. To my knowledge, there's nothing like it between Fresno & Los Angeles. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-12565142559429829822013-12-10T07:51:33.881-08:002013-12-10T07:51:33.881-08:00It took me MONTHS to say the words, "My son i...It took me MONTHS to say the words, "My son is deaf" before I could do so without breaking down in tears. I actually wondered to myself if I would ever get to a point where I wouldn't be embarrassed, sad and angry over it. It comes.....as you know, it comes. One day you realize that it's become your normal and you couldn't imagine life any other way. Getting there? Hurts like hell though. Kate https://www.blogger.com/profile/07991317683746658062noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-2475480610204776722013-12-10T07:14:51.030-08:002013-12-10T07:14:51.030-08:00Oh Friend. I'm not going to try to fix or fine...Oh Friend. I'm not going to try to fix or fine this. It sucks, right now. We both know you, Michael and these beautiful boys will be terrific - but right now it's not. My heart aches for you. Sometimes you gotta wonder how much can one girl take??! I am truly sorry. It's hard & seems so unfair.<br />When you are ready to rejoice, again, at the beauty and perfection of your boys - I will be here as well. But it's ok to feel the sad, for now. How can we enjoy beauty if we've never known pain?<br />Sending you sooo much love! I will keep you in my heart and pray the happy finds its way home to you soon.<br /><3 xoxoxo JenJennifer Miraclenoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-81732090149305808442013-12-09T15:22:31.391-08:002013-12-09T15:22:31.391-08:00Your sons are lucky to have you in their lives: yo...Your sons are lucky to have you in their lives: you are a great mom, and you have every right to be sad. It took me a year to not be sad anymore and sometimes it still hits me...at random times or places. Thank you for having the courage to share. ChristenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-20417506698320116002013-12-09T11:24:40.022-08:002013-12-09T11:24:40.022-08:00Becky- thank you so much for sharing your perspect...Becky- thank you so much for sharing your perspective and story with me. You are in my heart and prayers right now. Love, Chrissymommykellyhttps://www.blogger.com/profile/07697924681816487574noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-1972090076284393212013-12-09T07:10:55.235-08:002013-12-09T07:10:55.235-08:00Chrissy,
Thank-you for being authentic. I can so ...Chrissy,<br /><br />Thank-you for being authentic. I can so connected to the sadness. Like you, I feel most of the time I have figured out a way to deal with it and be truly happy. Then there is a moment or event and the sadness sweeps over me and is back and seemingly heavier than ever. As you know, the sadness doesn't stay forever. I hope it has a short visit this time. Sending love your way.Anonymoushttps://www.blogger.com/profile/16694679593819914694noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-68199981851743107652013-12-09T05:38:15.225-08:002013-12-09T05:38:15.225-08:00Hi Chrissy,
I am not a mother so I think I can...Hi Chrissy,<br /><br />I am not a mother so I think I can't fully understand how much that might hurt. But I have realized since I started reading your blog that you are strong, determined and brave. I know you glass will be half full again soon. (I have to say you kids are beautiful!!!) Big hug!Anonymoushttps://www.blogger.com/profile/15493083676814103258noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-53294489492901492242013-12-08T20:48:02.744-08:002013-12-08T20:48:02.744-08:00Chrissy,
Thank you for being authentic and real. ...Chrissy, <br />Thank you for being authentic and real. I have a little girl with a chromosomal disorder and I had to stop reading most blogs because of the "overly happy" outlook on life. It's fine most of the time, but just once I just wanted one other person to say they were angry too. I appreciate your line about wanting to wake up in the past. It has nothing to do with not loving the children we have, but people don't seem to understand that kind of statement and I'm thankful you said it. hugs to you.Anonymoushttps://www.blogger.com/profile/12391170312378974665noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-3398737661825832532013-12-08T19:45:07.693-08:002013-12-08T19:45:07.693-08:00Chrissy, You're kids are Bea.U.TI.FUL!! You a...Chrissy, You're kids are Bea.U.TI.FUL!! You already know that. Even if writing this post didn't take away your sadness or frustration or even ease it, maybe just knowing other people are here who care about you and your boys may help a little. I honestly cannot imagine going through what you are facing, but just want to say I care. ((((Hugs)))). Anonymoushttps://www.blogger.com/profile/00867979006051544137noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-40370879206943018852013-12-08T16:58:23.011-08:002013-12-08T16:58:23.011-08:00Chrissy,
It is okay to feel sad because this is s...Chrissy,<br /><br />It is okay to feel sad because this is sad. Wishing away sad or feeling bad about feeling sad adds frustration and guilt. So if you're sad, be sad. Sometimes, allowing it is the first step to it lifting away. Parker and Grey have beauty and you capture that beauty and show it to others. There is a lot of beauty, too, in a Mommy like you. Breathe in, breathe out. -LisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-58704421878810846712013-12-08T14:35:22.305-08:002013-12-08T14:35:22.305-08:00Crissy-
I know the pain. The evaluation days are ...Crissy-<br />I know the pain. The evaluation days are the worst. As you sit and BEG your child in your head to perform perfectly-please, just complete the puzzle or stack the blocks. And the results. They are even worse. In hindsight I can see the testing as a beginning of sorts, the beginning of the process of living with the grief for your child and family. The beginning of truly understanding where your child is and where he or she should be. You have such an amazing way of expressing your love for Parker and Greyson that your readers can feel it themselves. You love completely and I'll bet you grieve the same way. I will be here with you as you travel this difficult road once again.Kara Harrishttps://www.blogger.com/profile/05874443943441062431noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-65555952085307905472013-12-08T10:49:09.827-08:002013-12-08T10:49:09.827-08:00Chrissy my heart is breaking for you too. But I k...Chrissy my heart is breaking for you too. But I know you will bounce back. Your infectious positive happy energy will rebound within you. After all, he's your Doodle! And he's beautiful and lovable and so very precious.Gracianhttps://www.blogger.com/profile/02269210411802150919noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-61399452161407658322013-12-08T05:23:03.113-08:002013-12-08T05:23:03.113-08:00This was lovely, especially that last part. I am g...This was lovely, especially that last part. I am going on my own such adventure, starting today. Come out, come out, whetever you are!maryannehttps://www.blogger.com/profile/05542919684945102630noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-50003643224655971222013-12-08T05:19:36.128-08:002013-12-08T05:19:36.128-08:00Your words have touched my heart before, but with ...Your words have touched my heart before, but with this post broke it a teeny bit. Sending you love and strength and prayers that you get your happy back soon.maryannehttps://www.blogger.com/profile/05542919684945102630noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-15266664429766056202013-12-08T02:36:01.424-08:002013-12-08T02:36:01.424-08:00Chrissy, Thanks for sharing this. I have a 6 year...Chrissy, Thanks for sharing this. I have a 6 year old son with autism. During the process I felt that I knew for sure that an autism diagnosis would be the outcome. I found out in an email from the psychologist. Although I was accepting it felt so different than I thought it would. It was so heartbreaking to say out loud, to tell anyone at first. My other son who is now 3 received early intervention services but has no autism diagnosis. He has aged out and does not require them any longer. Since my son Luke has started kindergarten(in an autistic support class) you would not believe the change. One day you will be at a place where things are a lot easier to manage. The changes that have occurred over the year are truly amazing. He can answer a few simple questions now, his attention has increased greatly and he has a real desire to share things with us suddenly. A year ago it was often a struggle to capture his attention. I have a 10 month old daughter as well. Your children are beautiful. Looking forward to reading more about your journey. Thank you for being so honest. I know you do your best to keep a positive attitude and it is hard in a time like this. Stacy Ghttps://www.blogger.com/profile/08105638371694373781noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-57254689034580221102013-12-08T01:30:06.415-08:002013-12-08T01:30:06.415-08:00There is a poem that I read shortly after Kaylie w...There is a poem that I read shortly after Kaylie was diagnosed that I would like to share. You've probably already seen it but just in case you haven't...<br /><br />"Welcome to Holland" written by Emily Perl Kingsley <br /><br />"When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.<br /><br />After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." <br /><br />"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.<br /><br />But there's been a change in the flight plan. They've landed in Holland and there you must stay.<br /><br />The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.<br /><br />So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.<br /><br />It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.<br /><br />But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."<br /><br />The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.<br /><br />But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."<br /><br />Blessings to you and your beautiful family!Beckyhttps://www.blogger.com/profile/15459059896640242293noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-82925066885776272262013-12-08T01:29:41.276-08:002013-12-08T01:29:41.276-08:00I have two girls. Kaylie is 5 and Macy is 3. They ...I have two girls. Kaylie is 5 and Macy is 3. They both have Autism. Not sure why, but their diagnosis(es) did not make me that upset. I think it was because I had followed Carepages of kids who were dying of terminal illnesses. I thought "Heck, it's just Autism". I don't have to watch them suffer physically, they're just a little behind their peers. I had perspective from reading those pages and realizing that it could be so much worse. In the past 3 weeks, I have gained even more perspective. I found out that our son, Blake, who I am 22 weeks pregnant with, has Trisomy 18 (he has three #18 chromosomes, instead of two). It is a fatal condition. The chances that he will make it to birth are 1 in 6,000. He has several serious anomalies that if he does miraculously make it to birth, he will die a short time later. I will be happy having him just a few minutes/hours/days. <br /><br />I pondered whether or not I should share this here, as I don't want you to think for one second that I am discounting your feelings of sadness with Parker's diagnosis. You have every right to have any feelings you have about it. I just want to tell you that my life got much better once I started looking on the bright side of things and realizing that things could be so much worse. What I am dealing with now is probably one of the worst things I could imagine. I will get through it, with God's help. I will be happy again one day. Heck, I am somewhat happy now most of the time. It surprises me as I thought if something like this happened to me, I would stay in bed and cry all day long but God is good and is carrying me through this. I know my son's life has a purpose and I know God will take care of him when He calls him home until I can see him again. <br /><br />I understand that Autism is hard at times but it is also very rewarding at times. I celebrate milestones that most parents wouldn't even notice! Your boys are SO beautiful. They will be OK. You will be OK. Take all the time you need to grieve the dreams you had for them and to create new dreams. Beckyhttps://www.blogger.com/profile/15459059896640242293noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-29094162848584754502013-12-07T21:03:32.406-08:002013-12-07T21:03:32.406-08:00I am a school psychologist, and every time I go in...I am a school psychologist, and every time I go into meetings and have to say words that nobody wants to hear it is hard for me. Hearing your perspective on things has helped me to see the other side of the table. Your blog really has changed things for me, with my own kids and with the families I serve. Way to change the world one mom and one school psychologist at a time! Thanks. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-30836548845985317702013-12-07T20:48:57.194-08:002013-12-07T20:48:57.194-08:00"Blessings alone do not open our eyes. Indeed..."Blessings alone do not open our eyes. Indeed, blessings by themselves tend to close our eyes. We do not come to know Him in the blessing, but in the breaking." --Chip Brogden <br /><br />I read "Twelve Clean Pages" (by Nika Maples) not too long ago. A beautiful, beautiful book that I highly recommend. <br /><br />Hugs from far away, my friend,<br />-April VernonAnonymoushttps://www.blogger.com/profile/11362062168975566962noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-3496823072963751002013-12-07T20:26:53.857-08:002013-12-07T20:26:53.857-08:00That was a hard day for me as well. My second chi...That was a hard day for me as well. My second child with autism. I didn't want this for him, and, selfishly, I didn't want this for me either.<br /><br />Some days its so easy to see how beautiful and amazing my boys are, and days like this its hard to see beyond the struggle. Time will pass and things aren't magically going to be sunshine and rainbows, but its not always going to be this hard.Samjihttps://www.blogger.com/profile/13538274785618523953noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-27053089318677921172013-12-07T19:57:42.946-08:002013-12-07T19:57:42.946-08:00Dear Chrissy I know exactly how you feel and right...Dear Chrissy I know exactly how you feel and right now, As I write this, I am pretending we are speed hiking up and down the mountains near my house, because that is what my fellow moms of kids with super powers and I do here...we walk and talk, with autism, and in that supportive and powerful place, we shift things. When my first son was diagnosed with autism I think I was mostly surprised and shocked. When my second son was diagnosed with autism at a meeting, on his 3rd birthday, I was overcome by sad. I didn't know that that was what it was actually, until I read one of your old posts that talked about "the sad". Thank you so much for giving that state such a simple, but truthful word, because I had a million other words I thought I was struggling with. And that is what it has often cycled back to: simple truths, simple living. simple being, and the beauty of that mental and physical place. After two diagnoses, I went on new adventures. I did things I never would have done, without that second "sentence". I did an equus workshop and learned about the power of non-verbal communication through horses. My thoughts, my beliefs, my educated mind....were all blown wide open! It was so exciting to be a student again! It was amazing to expand and grow and dive into realms that wow...I never would have been inspired to experience without these boys. And I learned things that only enhanced my relationship with my children. From there it was on to Byron Katie, Son-Rise at the Option Institute, meditation, and lately...a fascination with minimalism and tiny houses (ha ha) but this all comes from the simple truths that are the greatest gifts my children have given me...that because of their autism and where I needed to go to learn things...I know now and appreciate the simplest of things. I am a student again, devouring books, going to workshops, meeting new friends, excited about new adventures and not afraid and it is the best, best, best place I could ever grow to . I love just being with my boys. I watch them and really pay attention to what I am seeing, and I appreciate it, deeply. We never have to speak. I love to play with them, I love to be as silly as I can be and be so in touch with my inner child. It is fun and creative and I feel alive. With them. And in those places it doesn't matter what labels they have or if they are like/different from "typical kids", because what matters is that we understand and accept and are creating happy. We are committed to happy. We will go on another adventure to find happy if happy tries to hide. We will shout, "Found you! Silly Goose!" So much love to you and your familyMardinoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-36798839598326225282013-12-07T19:47:59.365-08:002013-12-07T19:47:59.365-08:00I hear you Chrissy and I am so grateful. Everythin...I hear you Chrissy and I am so grateful. Everything about this space is beautiful - your photos, your words, your boys, you. Even your pain, your heartache. I am better for having known you in this way. Thank you.Juliehttps://www.blogger.com/profile/12843676020377231749noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-23189928402164058522013-12-07T19:47:58.895-08:002013-12-07T19:47:58.895-08:00Good for you for sharing with so much honesty. The...Good for you for sharing with so much honesty. The truth is...this stinks. This shouldn't be happening. It is not fair or right. What is going on....why your kids ? Why my nephew ? Why my friend's son? Why any child or parent ? I get only a fraction of your pain...small fraction and my heart hurts. Keep writing...we are here. The more that listen...the more attention. ..the better chance we have to help educate. You have a gift...a gift of writing. Keep sharing...you are an amazing mommy .Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-6335477006729414512013-12-07T19:27:52.670-08:002013-12-07T19:27:52.670-08:00That picture of Parker is the most heartbreaking, ...That picture of Parker is the most heartbreaking, beautifully poignant portrait. Your fight to be fully present for both of your little guys is both humbling and inspiring. Thank you for sharing all of the emotions so honestly. It is a gift to all of us and, though it solidifies a reality you don't want, I hope that eventually it's a therapeutic record of the presence of God through it all. Praying for all of you.Sarahhttps://www.blogger.com/profile/17285537502589130920noreply@blogger.comtag:blogger.com,1999:blog-8077151913672187133.post-85931529787216001142013-12-07T19:19:32.209-08:002013-12-07T19:19:32.209-08:00Holding space for you with lots of love and prayer...Holding space for you with lots of love and prayers on the side.Bethhttps://www.blogger.com/profile/02303122465752586062noreply@blogger.com