tag:blogger.com,1999:blog-2864394486854097024.post8708095338242906820..comments2024-01-30T02:21:09.599-06:00Comments on Along Came the Bird: World Autism Awareness Day: Light it Up Blue - But Get Loud, TooAlongCameTheBirdhttp://www.blogger.com/profile/04590432394118183751noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-2864394486854097024.post-10903939609292911442014-01-02T18:15:42.984-06:002014-01-02T18:15:42.984-06:00 I loved your post! I loved your post!Theres Tulips In Hollandhttp://www.azuregreen.net/prodinfo.asp?number=RVOOBnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-78894819108730124512013-04-02T19:43:39.626-05:002013-04-02T19:43:39.626-05:00If you're setting up a PECS program, I have a ...If you're setting up a PECS program, I have a digital copy of Everyday Education by Pernille Dyrbjerg and Maria Vedel, it's all about visual communication aids, and it's got heaps of printable pages. I've got it up on mediafire, in my digital autism library: http://www.mediafire.com/#mcz5cbhdg5dedAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-82969673536205383952013-04-02T19:21:30.431-05:002013-04-02T19:21:30.431-05:00I'm autistic; I'm from an autistic family ...I'm autistic; I'm from an autistic family (I can trace autism back at least four generations back in my mother's family), I identify as autistic, and my diagnosis has been very positive for me. I don't like a lot of what Autism Speaks says and does. <br /><br />I do think that there are at least two types of autism. I don't know if the regressive kind is caused by something external, or if it's just genes that 'switch on' at a later time. Maybe they'll have figured it by the time I'm old.<br /><br />And I do think we'd all be better off if we listened to each other. I think Autism Speaks needs to listen to autistic people more, listen and accept autistic people's viewpoints as valid, whether or not what autistic people are saying lines up with their dogma. I think autistic people need to realise that even the most vocal cure seekers love their kids, and are only trying to help their kids live a happy life. I think people should stop pointing fingers at non-verbal autists communicating by typing or pointing, and thinking that they're a fraud, or that their parents and carers are delusional. I think autistic people need ACCEPTANCE, not AWARENESS or TOLERANCE.<br /><br />I think we all need to listen, and understand that no view is the right view, or the only view, just another view, and that no one can truly understand what it is to be someone else, we can only try and empathise.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-74684339474264812272013-04-02T16:24:05.680-05:002013-04-02T16:24:05.680-05:00I have been thinking a lot about what you said ori...I have been thinking a lot about what you said originally in your post about how you feel Lily regressed and perhaps she does not have autism but symptoms that are interpreted as autism - if I'm following correctly? I understand how you are saying that this "autism" has her captive and you believe there can be wonderful changes in store for her. I accept your views fully and hope they are fulfilled. <br /><br />So much of the world of autism is not understood, leading us all to form our own opinions based on our own experiences, each of which are different from the next family who experiences autism or its manifestations in their homes. Based on one's own experience, which is very real in it's limited expanse, some have come out believing they can speak on behalf of groups or on behalf of "the whole". I don't think anyone can do that outside of their own experience. <br /><br />Instead of seeing two versions of autism - I see 35 million people worldwide with similar symptoms, some of whom can fall into this group or that group of similar life experiences and derive support from those groups. April is just a month. A month that has become one where what affects a significant number of those 35 million and their families and friends and acquaintances by bringing discussion of what, and how and why we believe what we believe about this amorphous concept that affects each of us. <br /><br />I'm sad to see this continue as us versus them. Be that as it may, in my heart, I will do what I can for my son and for anyone who reaches out to me. That's all I can promise to do. I don't want to speak for anyone else. I don't think I have the right or the knowledge. And I know that no one has that right or knowledge in my house either. <br /><br />Thanks for letting my 2 cents in here too, Lana. Much love to you, Lily and the family as you pursue what is right for Lily with Dr. Goldberg. xoKaren V.https://www.blogger.com/profile/02432239210579792788noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-37011035813980204292012-12-29T23:21:46.576-06:002012-12-29T23:21:46.576-06:00Thanks so much for the comment! Glad the PECS pos...Thanks so much for the comment! Glad the PECS post was helpful. I'll be sure to visit your blog as well...AlongCameTheBirdhttps://www.blogger.com/profile/04590432394118183751noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-21101596942756995392012-12-29T23:20:03.915-06:002012-12-29T23:20:03.915-06:00One of the most valuable lessons I learned about d...One of the most valuable lessons I learned about diabetes was this - carbs are carbs are carbs are carbs. It does't matter if it's cake or an apple or french fries or milk or donuts or sweet potatoes.<br /><br />When Ryley was first diagnosed, her doctor told us to let her have no sugar. It was horrible. And he was horribly misinformed about feeding a diabetic child. We changed doctors about 6 months later and the new doctor said these exact words to me - "Sugar is NOT cocaine". I learned that Ryley could have sugar in moderate amounts (we are healthy eaters no matter medical conditions) and we just needed to count the carbs like we did everything else she consumed. I gave her 2 Oreos and actually cried while she ate them. :(<br /><br />Education is so important but it's frustrating, isn't it? Especially when you feel like you're educating the medical community, too.<br /><br />Good luck! Thanks for the comment!<br /><br />And would love to know where you go to church in Austin. We know so many of the pastors in town - wondering if we know yours. AlongCameTheBirdhttps://www.blogger.com/profile/04590432394118183751noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-65360427869253753452012-10-12T09:42:20.851-05:002012-10-12T09:42:20.851-05:00I first stumbled across your blog because I was lo...I first stumbled across your blog because I was looking for PECs ideas for my daughter. I love your blog, sincerely. A new one that I will be following. I am going to be stealing some of your PECs set up ideas. My daughters ABA therapist even ran with some of the websites you posted for PECs icons. Thank you so much for putting all of this wonderful info together. I'll just say that I agree with everything you posted all the way down to the 2 groups of Autism Parents. Sheesh, I couldn't agree with that more.Theres Tulips In Hollandhttp://autismspuzzle.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-71743397751534005832012-09-10T23:01:24.396-05:002012-09-10T23:01:24.396-05:00Found this post while googling around, and I love ...Found this post while googling around, and I love what you wrote! I do not have an autistic child, but I DO have a Type 1 Diabetic child. She was diagnosed at the age of 2 1/2, and is about to turn 6. We moved to the Austin area three years ago, just a few months after her diagnosis. <br /><br />Since living here, I have not been my usual social self. For a time I thought it was just due to getting adjusted, being in a new city and all. But recently I've realized that it actually has more to do with having a Type 1 Diabetic child. Unfortunately (and in total opposition to my nature) I have isolated myself somewhat, and this is all in an effort to protect myself from peoples hurtful and ignorant comments regarding diabetes.<br /><br />The ways that people can step on a diabetic moms dignity are endless.....One of the first incidences I experienced involved two women from church who carried on a conversation about what they felt were the causes of diabetes, while I sat right next to them. They casually bantered back and forth stating that the reason children developed diabetes was because they did not spend enough time playing outside in the sun. It didn't seem to phase them that I was sitting right beside them....they just chattered away!<br /><br />One of the greatest examples of ignorance that I ever encountered actually involved a nurse from the children's hosptial here in Austin. I wasn't there to witness this, but a dear friend of mine who works there related the story to me. See, my friend had thrown a birthday party for her son, and my daughter was a guest. We took lots of pictures of the kids eating cake. Well, she was on a break at work one day and pulled up the birthday pics on her iphone - just to show some of the other nurses how great her sons birthday was. A picture of my daughter eating cake came up on the screen. My dear friend said innocently "Oh, and this is my friends daughter, the one I've told yall about that has diabetes". One of the nurses shrieked in horror "And she let her eat CAKE?". And this is coming from the mouth of a nurse at Dell Childrens Hospital. <br /><br />I've heard it all...."She can come off insulin if you give her the right vitamins and nutrition", "Will she outgrow it?", "If she at only fruits and complex carbs, she wouldn't need insulin". When I try to explain to them that if I gave her an apple...and no insulin to go with that apple...her blood sugar would go so high it would send her into a ketoacidosis coma, they look so incredulous.<br /><br />Dealing with this dynamic all the times makes me feel.....tired. Anyhow, from one diabetic mom to another, I loved your post!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-41915804387392468342012-07-28T20:15:15.300-05:002012-07-28T20:15:15.300-05:00I just came across this post, linked from Lovethat...I just came across this post, linked from LovethatMax. I love it. I am honestly always searching to figure out why it is my son has Autism & when it started. He was always a difficult baby, straight from birth - we had horrible colic issues, gastro-issues & he's always been really "touchy" or "sensitive" and I always had a hard time trying to explain to friends why I couldn't do the same things with him that they did with their kids & why we never let anyone else put him to bed so we could have a night on the town, etc.<br />However, I can also look back at his first year & see a different child than the boy who started showing up around 15 months of age. Our 15-month pediatric appointment, he had some signs of speech. At 18, none. There were other things too, that we've been remembering suddenly that were different the first year. BUT I don't really think that something happened to him to cause his Autism after 12 or 15 months - I almost think of it as something that happened in utero or very early in infancy, that was laying almost dormant, waiting.<br />I also hate how careful you have to be in some forums about your feelings about bad days & bad moments & when you are so dang frustrated & depressed after a period of just everything seeming to go wrong & you are thinking, I hate Autism b/c it's making my kid so unhappy & I wish he could experience life with less difficulty. But, I still love him - I just wish he could have the same happiness that a "normal" kid has in the same circumstances he has. And no one can tell me that he's as happy, when he has to struggle & work so hard every day.Jenny S-Anoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-16097165659132870162012-07-24T19:11:59.835-05:002012-07-24T19:11:59.835-05:00Thanks for sharing your interesting thoughts and p...Thanks for sharing your interesting thoughts and perspective. I am really hoping you read this reply because I'd love to hear from you and "meet" your LU daughter. Mine is headed up there next month! :)AlongCameTheBirdhttps://www.blogger.com/profile/04590432394118183751noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-51739629801453046832012-07-24T14:34:33.105-05:002012-07-24T14:34:33.105-05:00This is one of the best posts i've read on the...This is one of the best posts i've read on the division. Was just having this discussion with someone today - that our discussions of autism are colored by if we believe genetics versus environmental. I love the thoughtful, brilliant way you laid this out.Alysiahttp://trydefyinggravity.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-58587805258116093482012-07-24T09:07:08.248-05:002012-07-24T09:07:08.248-05:00Thanks to all of you for your kind and thoughtful ...Thanks to all of you for your kind and thoughtful words and for sharing your insight.AlongCameTheBirdhttps://www.blogger.com/profile/04590432394118183751noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-50063843862143903642012-07-21T09:41:03.920-05:002012-07-21T09:41:03.920-05:00Hi, Lana! Thank you for letting me know about your...Hi, Lana! Thank you for letting me know about your post. I appreciate your willingness to engage in dialogue. We do disagree about our positions, but heartfelt thanks to you for being willing to talk about your position and my position and the differences openly and with respect: without name-calling, or inflammatory language, or disrespect. This is exactly what I hope for: that we can talk about the sources of conflict, that we can hear differing viewpoints, that we can work towards a way to move forward - together.<br /><br />I love what Nikki wrote. The language we choose to express ourselves matters. Especially, especially when we're talking about a vulnerable population. Autistics are vulnerable. Blogs and newspapers are public. This is not denying that autism has difficult challenges. But we do need to choose our words wisely and choose forums with awareness.<br /><br />My son has difficulty sleeping. Since he was a baby. When he wakes in the middle of the night, he simply can't go back to sleep. I wish he could. Sleep deprivation makes his life harder. It sure makes parenting harder, 'cause tired mama and tired boy can get really sticky. <br /><br />We can honestly talk about these things. I often tweet or FB about coffee. And sleep. And the dream of having a nap. Those things don't put a vulnerable population at risk. They aren't sources of pain for autistics. And they are real parts of our lives.<br /><br />I think there's so much more to talk about on this issue and others. We have so much to learn from each other. Our stories are important, and worthwhile, and valid. And I look forward to hearing them. Thank you, Lana.<br /><br />Brenda @ http://mamabegood.blogspot.com/Brenda Rothman (Mama Be Good)https://www.blogger.com/profile/17399227210081662280noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-32205354681365792142012-07-21T05:04:15.621-05:002012-07-21T05:04:15.621-05:00As always you have hit the nail directly on the he...As always you have hit the nail directly on the head. This post is brilliant. Thank you so much for taking the time to write it! As you know my son regressed into autism and I always view his autism as a separate entity and because of that view I always think that I can treat it and I have seen some success with different non-trad therapies.<br /><br />However, I have never questioned or belittled or mocked anyone who knows that their child was born with autism and that it is who they are. I believe that as mothers (and fathers) we ALL KNOW whether or not our child was born or regressed with it. We gave birth to these beautiful children and no one else was more present in their lives during their formative years. I would never think it's my place to tell another parent what their journey was with their own child. I wish everyone could just respect each other enough and allow each other to share our feelings and experiences without judgment.<br /><br />(BTW shared your post on my blog's facebook page- it was too good to not share with the world)Anonymoushttps://www.blogger.com/profile/13792420884570981804noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-82805366849824673622012-07-20T17:07:12.740-05:002012-07-20T17:07:12.740-05:00I honestly don't understand the use of the wor...I honestly don't understand the use of the word "normal." What does that mean? In this case, does it mean "not autistic." Because autism looks like a million different things. Some kids have sensory issues, some communication issues, some behavioral issues, some anxiety, some a combination of those. If you only have one of those, does that mean you're almost normal? There are just so many non autistic kids (i.e. "normal kids") out there who have qualities that I am very thankful I don't have to deal with with my autistic son. He may have a hard time socializing with a group of kids, but it would never, ever occur to him to leave someone out or make fun of someone. If that's what the normal kids are doing, then no thank you.<br /><br />I agree very much that we all need to be more open-minded and willing to accept one another's opinions and experiences. I just wish everyone could really think about how their words might affect others, particularly autistics. To me, it's not about silencing yourself or denying your struggles, but about choosing your words wisely and being specific. I try to think to myself, "I wish my son didn't struggle to communicate," instead of "I wish my son were normal." I think about how he might feel if one day he heard me say or read where I wrote that I wished he were normal. I hope that makes sense. Good discussion and thank you for starting it.Nikkihttps://www.blogger.com/profile/13865293252411093281noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-80584352651059814792012-07-20T14:31:40.919-05:002012-07-20T14:31:40.919-05:00I won't pretend to know the origins of autism ...I won't pretend to know the origins of autism or whether my little girl was "born with it" or predisposed, or something else. I do know that at 15 months something took over her body. She regressed. Stopped talking (she was early). Stopped responding. And acted "depressed." That was nearly 7 years ago, and we've been fighting for our little girl every day since. <br /><br />This is a powerful, passionate community. It's heart-breaking witnessing the hostility. Clearly, there's still so much we must learn from each other, and learn together.<br /><br />Thought-provoking posts like yours, hopefully, help guide a mutually respectful discourse.WhacamoleLifehttps://www.blogger.com/profile/03859531985217484640noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-51828797722854322972012-07-20T14:23:07.584-05:002012-07-20T14:23:07.584-05:00I do think we will eventually find several varieti...I do think we will eventually find several varieties of autism, and this may be a starting point. Why do some people talk and others never do? Why are some of extraordinary intelligence while others are not? My son definitely regressed, but when I look back, there were some signs all along as well. <br /><br />I think understanding types will help us understand the right ways to help each person, rather than trial and error we have today. Some types may respond better to gene therapy, or traditional interventions, or other forms, perhaps some not even yet invented.Wantapeanuthttps://www.blogger.com/profile/11993949583915924482noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-1928745603536356702012-07-20T14:05:27.466-05:002012-07-20T14:05:27.466-05:00It was obvious to from day one that Cam was differ...It was obvious to from day one that Cam was different. But then he regressed even further after 12 months. I guess in a way, I go between both camps because of that experience. No matter which camp I'm in, I always know that no matter what, I will do whatever I can to help him. <br /><br />I totally thought of you today as I was drinking my diet vanilla at Sonic =)<br /><br />My sis is Type 1. There are some really uninformed comments people make about diabetes!Fieldshttps://www.blogger.com/profile/14975476359462219455noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-51359498571732238222012-07-20T13:44:49.259-05:002012-07-20T13:44:49.259-05:00I'm of the same camp Flannery is in. In fact s...I'm of the same camp Flannery is in. In fact she pointed your article out to me. I do hear you and respect what you have to say and agree with it. From what we can tell both my girl's Autism is genetic on my husband's mother's side..just from traits alone. What's more both Madeline and Natalie were showing signs of Autism before they were a year old. I don't believe our case is every case.Anonymoushttps://www.blogger.com/profile/16088477730671415081noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-21889678113015620772012-07-20T13:17:38.505-05:002012-07-20T13:17:38.505-05:00You are far more courteous, and classy, than I cou...You are far more courteous, and classy, than I could hope to be in writing about this.<br /><br />While my son was, as far as I can tell, born with Asperger's, I still fall into the camp of seeing it as an intruder at times. I love and accept him for who he is, but I hate the pain and difficulty he endures because he struggles with understanding social skills, or with controlling the racing of his body and mind. I would take that difficulty away in a second, if I could.<br /><br />Kudos on a nicely-written post. I hope it is read by those that need it most.Flanneryhttp://theconnorchronicles.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-74419584817423136072012-07-20T12:05:38.556-05:002012-07-20T12:05:38.556-05:00Hi
As a 14 year old with type 1 diabetes I have he...Hi<br />As a 14 year old with type 1 diabetes I have heard all that and more including the gym teacher's but your not overweight and you scored high on the principal's fittness test sigh.Every time I asked him about the amout of activcy so i could calculate insulin he said the above followed by my father has diabetes and he does not need to know that.So you dont need to.Went to nurse she came down explained type 1 diabetes and this happened 2x a week for three years.Ugh now i am on to the high school.Maegannoreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-13846347783696225732012-07-20T11:00:01.869-05:002012-07-20T11:00:01.869-05:00Lana, as I sit at my desk not being able to fully ...Lana, as I sit at my desk not being able to fully understand all that parents of special needs kids go through each and every day, I almost don't feel qualified to respond. <br />Yet with tears fully streaming down my cheeks all I can think about are these unbelievably wonderful children that God blesses me through each time I am with them - or heck, even thinking about them, I simply can NOT just sit back and say nothing. <br />My heart physically aches for all that you as parents work with and through just to survive each and everyday, but to add just plain old craziness of division based on verbage grieves me even greater. <br />We as human beings should be focusing on loving and encouraging one another! While we may not always agree, division will not improve treatment or help find cures and that makes me sad.<br />Hang in there and know that many of us with "normal" kids (though even that can be debatable!) have a great love for families with special needs and love you and your children regardless of the verbage that goes along with diagnosis. <br />(hugs!!!)Anonymoushttps://www.blogger.com/profile/16472394471798325163noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-59383762360417783602012-07-20T10:14:55.066-05:002012-07-20T10:14:55.066-05:00Thank you, thank you, thank you. My daughter has a...Thank you, thank you, thank you. My daughter has a similar issue where she is "definitely not autistic" but exibits similar traits. This leaves her in the undiagnosed loop that makes it more difficult to find services/treatments. <br /><br />As far as wishing if Boo were normal, I don't feel guilty at all. I want the best for my girls, my NT daughter and my unique one. I do not want either of them to face hardships, discriminations, jeers, etc...<br /><br /><br />It's called being a mom.Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-1474742156594632372012-07-20T09:44:42.283-05:002012-07-20T09:44:42.283-05:00Hi -
I "met" you while you were on your...Hi - <br />I "met" you while you were on your month sabbatical (three cheers to you for recharging your batteries and knowing what's best for you!). I'm so going to have to e-mail you soon to introduce myself more. Especially since my daughter is a student at Liberty...<br /><br />Anyway, while I don't have a child with autism, my youngest son was a foster child we adopted. S biological father shook him when he was two months old and almost killed him. He has a TBI (traumatic brain injury) and is legally blind. We've dealt with the stares and the doctors who had a serious case of what we call "the idiot factor" and people giving their unsolicited opinions on therapy, treatments and discipline. Sigh<br /><br />I can totally relate to this differing camp issue because I have a severe hearing loss. Talk about differing camps, try meeting anyone in the deaf community. Good Gravy. Instead of helping new parents make the best choice for their child (a mantra I tend to repeat over and over again. I gather information to make the best decision for MY child. If you ask, I'm more than willing to share and help. But, the final decision has to be YOURS because you know your child). Anyway, I read something this week that was downright chilling. A deaf person wrote that they would go as far as to take away a deaf child from hearing parents because a hearing parent couldn't possibly understand the issues involved or make appropriate decisions. REALLY? Does that mean I, as a deaf Mom, shouldn't be allowed to parent my hearing children? Or my brain injured child with a vision loss, cause, gee, how can I possibly understand the issues and needs. I could go on. The point is, I so agree with you Lana. Decide what you will regarding the cause of your child's autism, but, let's work together to share and build each other up vs tearing each other down. The "Deaf" community is becoming more and more militant in their thoughts and isn't helping anyone. Isn't our journey challenging enough?<br /><br />Sorry for the lengthy post and rant...<br /><br />Thanks for taking the time to write your blog. :)Mom25https://www.blogger.com/profile/17938067796829657671noreply@blogger.comtag:blogger.com,1999:blog-2864394486854097024.post-77409031803136608232012-07-20T08:59:46.116-05:002012-07-20T08:59:46.116-05:00I have several things with what happened this past...I have several things with what happened this past week and I'm still processing it....there has to be a respect for what people feel. You may not like it and you may not agree with it but another person has a fundamental right to respect it. I don't think it was OK to tear that man apart. Yes, he said things it a public forum and that was his right but to do that in such a way was wrong. And to let the comments run wild??? Inexcusable.Lizbethhttps://www.blogger.com/profile/03449627964374811836noreply@blogger.com