tag:blogger.com,1999:blog-5441989712918579133.comments2024-01-26T03:49:33.080-05:00Rarer in Girls...My Daughter with AutismSuzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.comBlogger1524125tag:blogger.com,1999:blog-5441989712918579133.post-72530017667244019492023-07-09T00:57:50.686-04:002023-07-09T00:57:50.686-04:00How is Janey's Rett Syndrome diagnosis going?How is Janey's Rett Syndrome diagnosis going?Queenie Guldbaekhttps://www.blogger.com/profile/07843966504018362023noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-76823187738424750472023-06-10T03:11:09.316-04:002023-06-10T03:11:09.316-04:00Morning
I remember you talking about wanting to ...Morning <br /><br />I remember you talking about wanting to find camps for Janey and I found this:<br /><br /><br />Ihttps://www.spedchildmass.com/camps-special-needs-massachusetts-autism-aspergers/<br />Jhttps://www.blogger.com/profile/17880918072083854485noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-55636240265278338942023-04-26T20:54:10.121-04:002023-04-26T20:54:10.121-04:00i know this post is old- BUT, to add onto the Goob...i know this post is old- BUT, to add onto the Gooble thing- <br />I recently got obsessed with Yo Gabba Gabba once again (i'm working on an ADHD brain that suddenly remembers very obscure shows from my childhood) and the last episode i watched on YouTube was all about Gooble and the first segment was the gang asking him why he was sad all of the time so they could try to fix it, when asked why he was sad he said "i don't know! I'm sad all of the time and not knowing why makes me even more sad!" And i feel that's very powerful for a kids show, they singlehandedly explained depression perfectly, and the rest of the episode was them taking care of him and making him happy with very little things.<br />Anyways, i love this very weird little show. maikihttps://www.blogger.com/profile/03840193300690909481noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-75844774754113169292022-09-26T20:23:29.152-04:002022-09-26T20:23:29.152-04:00She is exactly who she is supposed to be. Yes, an ...She is exactly who she is supposed to be. Yes, an overused phrase, but she is wonderful and so are you.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-53335035143908105952022-06-01T16:06:40.944-04:002022-06-01T16:06:40.944-04:00Maybe she says "Want to get out?" becaus...Maybe she says "Want to get out?" because the water is not the right temperature and makes her want to get out?pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-43967845938222390902022-04-21T17:01:09.654-04:002022-04-21T17:01:09.654-04:00She is beautiful.She is beautiful.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-48027366119779983412022-04-06T09:06:42.035-04:002022-04-06T09:06:42.035-04:00Hi Suzanne, thank you for sharing the joyful and n...Hi Suzanne, thank you for sharing the joyful and not-so-joyful aspects of this special brand of parenting we've found ourselves in. I always look forward to your posts --they really resonate with me. And your Janey sounds like a delight, what a cool kid!Katyhttps://www.blogger.com/profile/00682562912714711356noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-83561244100688312722022-02-23T21:35:02.756-05:002022-02-23T21:35:02.756-05:00I want to help but don't know how. Prayers for...I want to help but don't know how. Prayers for all of you. Sorry if you dont want prayer. It is all I know to do right now.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-38478442421236490422022-02-23T21:28:40.564-05:002022-02-23T21:28:40.564-05:00You are amazing.You are amazing.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-45893162901823739702021-11-23T07:21:45.334-05:002021-11-23T07:21:45.334-05:00My asd/adhd son went 3 months without sleep as a t...My asd/adhd son went 3 months without sleep as a toddler. Both he and I (who also have a daughter) were a hot mess. Dr prescribed clonodine. He sleeps most nights now!!!!chuckleshttps://www.blogger.com/profile/03244697646396443634noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-49918750999335350942021-10-04T15:07:00.248-04:002021-10-04T15:07:00.248-04:00Janey is just as lucky to have you as a mother as ...Janey is just as lucky to have you as a mother as you are to have her as a daughter. pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-42712110518175364282021-10-04T09:44:05.152-04:002021-10-04T09:44:05.152-04:00The question is how to build a life that makes one...The question is how to build a life that makes one happy. What does a good life look like? Is it important to help others? Have a job you love? Build relationships? Connect with nature? My happy life may be different than Janey's, but I think that it it really the goal for all of us to be happy and fulfilled. SNhttps://www.blogger.com/profile/14539563012892454118noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-70678476335202634442021-09-20T20:24:41.983-04:002021-09-20T20:24:41.983-04:00Oh, Julie, you made me cry with that! It means th...Oh, Julie, you made me cry with that! It means the world to me. It honestly would be enough, just knowing that I had been there at times when you needed it. I am hoping for all the very best for you. I will never forget your words.Suzannehttps://www.blogger.com/profile/08240262747073351481noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-67896959810630377162021-09-20T15:29:22.400-04:002021-09-20T15:29:22.400-04:00Dear Suzanne,
I have followed for years and my he...Dear Suzanne,<br /> I have followed for years and my heart is with you. I can say that your words have given me reason to smile and hope when I thought there was none. My girl is twelve and I found you when she was three. I have been here throughout the years. I have laughed and cried. Most of all I have held on to the hope that through all of this you would be able to look back one day and smile. I write not because I have answers but because I found out that I have cancer now and every moment counts. I wanted to reach out and say hang in there when my heart told me to. So, no matter what comes remember this; your life, your experience, your wisdom and the level of strength you have shown has counted for someone. I know that you would not have wanted this to be the way that you made your time here count. I am sure you did not want this for your child but I am so very grateful that I found your blog. I am thankful for every word I have read. I am not saying goodbye. I am only saying that I am here and I hear you. My heart is with you. Juliehttps://www.blogger.com/profile/16551993236022208646noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-46097554490739404382021-09-20T02:08:27.235-04:002021-09-20T02:08:27.235-04:00I came here via postcrossing and started reading. ...I came here via postcrossing and started reading. I hope you don't mind. There's such a thing as radiogarden.com It's a fun thing to play with. By touching green spots on the world map one can listen to any radio station in the world. Who knows maybe your daughter would take a fancy to it. Most stations are playing music of course. The way you describe her switching from one song to another reminded me of the radio right away. waxwingshadowhttps://www.blogger.com/profile/09861812596013362919noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-58003889723111119892021-08-31T05:10:12.457-04:002021-08-31T05:10:12.457-04:00I love this mashupI love this mashupSeanhttps://www.blogger.com/profile/05643104368586192274noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-82545303874948011922021-08-27T17:54:35.822-04:002021-08-27T17:54:35.822-04:00Hang in there.Hang in there.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-80599219676648863802021-07-16T19:38:29.823-04:002021-07-16T19:38:29.823-04:00You are a fantastic mom to Janey. Hang on to that ...You are a fantastic mom to Janey. Hang on to that and understand that you are fabulous.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-74954588022102049272021-06-07T07:05:26.619-04:002021-06-07T07:05:26.619-04:00I have never written before but read for years. Th...I have never written before but read for years. This one hit hard. I fell like I have known you for year. I started reading when my daughter was three and she is 12 now. Live forever please. Juliehttps://www.blogger.com/profile/16551993236022208646noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-26734562714565112982021-04-06T21:47:31.948-04:002021-04-06T21:47:31.948-04:00She knows so much more than she can show. I would ...She knows so much more than she can show. I would be just like you, wanting to understand her mind. It is fascinating the way the mind works.pianoroxhttps://www.blogger.com/profile/08139453264320054691noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-85009445163684442992021-04-06T15:16:14.932-04:002021-04-06T15:16:14.932-04:00The repetitive videos can end up being a form of t...The repetitive videos can end up being a form of torture if you play them enough. They're just a pacifier for older kids. Janey does come across as girl with a strong will that is difficult to divert or bribe. My daughter has plenty of time on her hands to do other things and luckily she's not as stuck on routines as many autistic kids are. We try to go on walks on public trails in the woods. Usually, there aren't many hikers around so she can stim and make noises and other people can just walk around us if they don't like it. My daughter doesn't have much muscle tone and we don't to see her zoned out watching videos and gorging herself on Oreos and Doritos while on the couch. I don't want that to be her future (yeah I know plenty of Americans who are happy that way) will at least prod her now to do more because she gets into a habit of being isolated. She's a in social group on Saturdays but doesn't mingle very well. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-3117771384606903252021-02-07T12:04:52.668-05:002021-02-07T12:04:52.668-05:00My daughter has a similar obsession. She will foc...My daughter has a similar obsession. She will focus on a single scene of "Martha Speaks" for long periods of time. She will laugh about the scene where a man is tripped up by broom. She'll draw a picture of just his pants and shoes. <br /><br />Remote learning is a joke. My daughter's teacher got sick with COVID-19 even though she hasn't seen her students in person for months. Transmission by students is very low and that's a scientific fact teachers don't want to hear. I read in Virginia they will have students in school but the teacher will be remote. They will hire high school grads to watch the kids in class. <br /><br />My daughter started to go back to school last week. My son doesn't start in person until FEB 22. Seems dumb that you can't change your preference to in-person learning due to your previous decision to go remote. The needs of student and parents should come first over what the school wants. They have had plenty of down time and still get paid when a lot of families are suffering for nearly a year. People with jobs really don't care about the economy as long as they making money. We are not "all in this together". <br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-92156746991357367222021-02-05T03:22:31.980-05:002021-02-05T03:22:31.980-05:00I’ve been thinking of you all, and I really hope t...I’ve been thinking of you all, and I really hope that Janet’s rest was negative and that you are all healthy! Tough decisions is right, and in these situations it can feel like there is no way to win. Just want you to know that a stranger (and sped teacher) on the internet is rooting for you all. jmfinenhttps://www.blogger.com/profile/08771634002198258452noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-73605000215217089202021-01-22T10:06:22.910-05:002021-01-22T10:06:22.910-05:00Sweet angel girl. Giving everything she has in he...Sweet angel girl. Giving everything she has in her to communicate. You know it mama! ALL behavior is a form of communication. My gut tells me she hit this time because she was making a connection...a holy moment, wasn't it? She made a connection WITH WORDS! And this divine cuddling, almost on the verge of understanding moment was interrupted by someone else entering the room. Sigh. I have to say, I am only beginning to follow this blog, so I am going completely on intuition which I hope is God directed.<br /><br />Your daughter is so so beautiful and precious. I too have a daughter on the spectrum. She is now 15. Diagnosed at 2 and a half (although we began seeing signs at least a year prior to that dx) Also, I work as a parapro (teacher's aide) in a high school life skills classroom. OH! To be able to read those behaviors, and understand those precious words! <br /><br />Have you ever watched "Life Animated"? If not, check it out for some inspiration. <br /><br />Much love to you, as you go about the daily blessings and trials of raising this lovely lady! I pray for patience, peace and wisdom for you, and all parents of these children with the gift.Anonymoushttps://www.blogger.com/profile/12415343649731324528noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-18842913659508187192020-12-13T19:14:37.392-05:002020-12-13T19:14:37.392-05:00My daughter is somewhat above being q minimally ve...My daughter is somewhat above being q minimally verbal girl but she rarely says much spontaneously. She doesn't reply to "How are you?" much. I usually has to be repeated. It's like talking to someone who can't find out you're talking to them. Today I asked her what made that sound at the end of a Moody Blues song. She said "gong". How often do you hear a gong and know the word if you haven't heard much before? I'm told a person has to hear a word 50 times before it becomes a part of your vocabulary. Anonymousnoreply@blogger.com