tag:blogger.com,1999:blog-2938775437231014036.post6210329753203178888..comments2023-09-11T07:13:59.685-07:00Comments on A Different Nest: Rx Autism and Lessons Learned: And how this relates to a Small Faces songCarolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-2938775437231014036.post-52490157473672359642009-07-21T14:31:20.665-07:002009-07-21T14:31:20.665-07:00My son is almost 11, with Cerebral Palsy and autis...My son is almost 11, with Cerebral Palsy and autism (or at least some behaviors on the autism spectrum). He was born very prematurely--at 28weeks, and had many complications that resulted in CP and autism. My main question--he goes through bouts of screaming and yelling and it seems like nothing will get him to stop. Could anyone out there share some techniques that worked for them? Thanks.Josienoreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-89180456908608694832009-03-12T10:45:00.000-07:002009-03-12T10:45:00.000-07:00I'm glad that the diet worked for you.I'm glad that the diet worked for you.Carolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-74020568414476700392009-03-11T17:54:00.000-07:002009-03-11T17:54:00.000-07:00Such great, grounding advise. And, a terrific res...Such great, grounding advise. And, a terrific resource.<BR/><BR/>Although my Shea does not have the Autism diagnosis, just the developmental delay and severe speech delay, I have to say the Wheat and Gluten free diet really worked for us. Within days were able to see direct change in his focus and verbal ability.<BR/><BR/>But, your point is well taken. It is dang hard.Jake Dillonhttps://www.blogger.com/profile/10787359718879448342noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-46252191440243648852009-03-08T22:07:00.000-07:002009-03-08T22:07:00.000-07:0018 months; that is good and early. I think I floa...18 months; that is good and early. I think I floated down the "River Denial" for a few months before Sayer's official diagnosis. Once I got on board I did 100% and I imagine your sister-in-law did, too. That family is lucky to have you - although "intervening" in another family is always tricky.Carolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-61151178058644608752009-03-08T21:48:00.000-07:002009-03-08T21:48:00.000-07:00I was able to urge my brother to seek a diagnosis ...I was able to urge my brother to seek a diagnosis for his son at the age of 18 months. He was unable to convince his wife to start therapy for 6-9 months after. Very frustrating when you know SOMETHING should be moving along. Thankfully they have him in a pre-school that is wonderful (along with much 1-1 therapy) He will always be autistic but he's verbal now (wasn't before) and reaches out to people which is so important. It has been a difficult journey that's only beginning but I'm glad I can be some support and I am constantly learning from you strong moms!Palymamahttps://www.blogger.com/profile/11364902088861212175noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-5954090984632002262009-03-08T18:53:00.000-07:002009-03-08T18:53:00.000-07:00Yes, Jane, that would be fantastic! I really pour...Yes, Jane, that would be fantastic! I really poured my soul into this one! Thanks! CarolCarolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-39516907007144020182009-03-08T13:44:00.000-07:002009-03-08T13:44:00.000-07:00Think this is good for MidLifeBloggers????Think this is good for MidLifeBloggers????ByJanehttps://www.blogger.com/profile/10540902996183063666noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-34391347427411552942009-03-01T18:14:00.000-08:002009-03-01T18:14:00.000-08:00Yes, there is the telephone! We do so much over t...Yes, there is the telephone! We do so much over the computer it's easy to forget that there can be nothing like a chat on the phone or out for a coffee.Carolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-55512298757834168192009-02-28T19:09:00.000-08:002009-02-28T19:09:00.000-08:00These are fabulous, fabulous suggestions. All of t...These are fabulous, fabulous suggestions. All of them. It's a scary time, and everything doesn't have to be done at once. The child will grow up and will most likely improve whatever therapies you can deal with. Best thing is to hand them your phone number and say call whenever--because you understand.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-740168867013566472009-02-28T17:01:00.000-08:002009-02-28T17:01:00.000-08:00Hello friends, loved the blog, Carol. Especially o...Hello friends, loved the blog, Carol. Especially on the eve of my son's 21 year birthday which brings mixed emotions of joy for who he is and sadness from hopes for what might have been had he not autism.<BR/><BR/>As for diet, there is a middle road. Our son in elementary school seemed to be much better at school on the gluten free/casien free diet but at home we saw no changes. And it was really hard to follow. So, with our pediatrician's blessings, we limit cheese/dairy to small portions and offer alternate sources of calcium and Vitamin D such as fortified orange juice. When/if he has a difficult day or seems tense, we go heavy on the rice, etc. If all is well we relax on the food too. We also stopped medication for facial tics commpletely, this time in consultation with our psyhchiatrist. It is just easier to live with some oddity than to push pills daily. Families can and should explore the treatment plans that work best for them.<BR/><BR/>Moving on, I cannot thank enough the friends who have older loved ones. When our son was small, we visited a group home and it was truly not awful. They had a pet, a life with choices, and the adult with autism let Geoffrey jump on his bed. How cool is that???<BR/><BR/>And to end my sharing today, the Vancouver area Special Education PTSA is in dire need of folks to run for officers for next school year. If you can get to Vancouver you live close enough. I believe we are the only group of its kind in the area: teachers, adminstrators, parents, and students together in peace. Most of our coordination is done over e-mail so the face time needed is tiny (1 to 2 hours a month, or less). The state funding for developmental disabilites for the immediate future appears horrible and I believe that makes connections all the more important.<BR/><BR/>Take care, everyone, PamAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-26957691722076067412009-02-28T09:50:00.000-08:002009-02-28T09:50:00.000-08:00I am not referring to Celiac disease, but more to ...I am not referring to Celiac disease, but more to unproven theories about the role of gluten and casein in the brain and behavior ofpeople on the autism spectrum. That's different.<BR/><BR/>If a parent suspects their child has Celiac disease than yes,they should get testing from their primary care doctor for that, just as they would if their "typical" child showed symptoms.Carolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-57378852196507568952009-02-28T00:56:00.000-08:002009-02-28T00:56:00.000-08:00Before you tell parents to not have their autistic...Before you tell parents to not have their autistic children follow the gluten free diet, make certain the child does NOT have the antibodies to gliadin. If the child does have the antibodies to gliadin, then he/she should be on the gluten free diet. Be careful with the advice you give.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-44552863824548535192009-02-27T06:32:00.000-08:002009-02-27T06:32:00.000-08:00It's so true, though, Carol. I have friends who j...It's so true, though, Carol. I have friends who just 'cannot deal'. That's okay, at least they haven't deserted me (yes, that has happened). Yes, I do understand the ones who have left, also.<BR/><BR/>KatieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-7805017856966650962009-02-26T12:55:00.000-08:002009-02-26T12:55:00.000-08:00That's right - I forgot to comment that different ...That's right - I forgot to comment that different people offer different types of support. There are "autism moms" I wouldn't want to go away for the week-end with but provide great support in other ways. And I have "non-autism" friends I just escape and have fun with, and try NOT to talk about Sayer when I'm with them. Both are important.Carolhttps://www.blogger.com/profile/09999871816948636830noreply@blogger.comtag:blogger.com,1999:blog-2938775437231014036.post-83237777584969376612009-02-26T12:33:00.000-08:002009-02-26T12:33:00.000-08:00I agree with the list: especially (and I am paraph...I agree with the list: especially (and I am paraphrasing here): take care of yourself and your child and other children; don't buy into the school district is evil (honestly they are doing their best and I, too like to do something even if it is just a "I have noticed this cool thing so and so is doing, thank you!"), bring snacks to IEP meetings (they love me when I do that!). Most of all, work WITH your team. You'll get a lot more than if you work against. We all bring our expertise to the table. Also, try to find a mentor. <BR/><BR/><BR/>I also suggest to take a deep breath, if only for a few seconds. This is a life-altering diagnosis. Allow others to grieve. Accept help from others (just listening to you counts!). I have friends who will never meet my son on the spectrum and that's okay, but they listen to me when things are tough and celebrate when things are great. Others may not know how to deal with it. <BR/><BR/><BR/>KatieAnonymousnoreply@blogger.com