tag:blogger.com,1999:blog-6942900775029495748.post4348208554349146437..comments2023-07-07T04:22:53.365-06:00Comments on Julie's Boyz: I never wanted autismAnonymoushttp://www.blogger.com/profile/13601329296517304013noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-6942900775029495748.post-28069112297920880982013-09-18T11:42:46.926-05:002013-09-18T11:42:46.926-05:00My son has aspergers, and while I love his quirky ...My son has aspergers, and while I love his quirky take on life, he and I both hate the anxiety that makes life so hard for him, and the resulting anger that upsets the whole family, and the lack of interest in exercise and poor eating habits that could ruin his health and shorten his life, the difficulties understanding social cues which means that he struggles to make the friends that he wants to make, and the behavioural problems that get him into trouble in school.<br /><br />So yes, he might be better off without it.Looking for Blue Skyhttps://www.blogger.com/profile/10010049814419812468noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-15799877963797282622013-09-14T09:56:09.295-05:002013-09-14T09:56:09.295-05:00I understand... my daughter is five years but func...I understand... my daughter is five years but functions as a three year old. Her peers are heading to kindergarten this fall and my girl isn't ready for it. I chose to homeschool and am judged for not putting her in a school. I didn't ask for this road but it's the path I have to walk. I will embrace it as best I can!Stephaniehttp://homeschoolingmamaof4.blogspot.ca/noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-88598609953518933252013-09-13T19:07:43.865-05:002013-09-13T19:07:43.865-05:00Dang, I know animosity, but I had to look up ephem...Dang, I know animosity, but I had to look up ephemeral! Still, I get what you mean. Sometimes being too smart IS very isolating.Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-51795046176837307172013-09-13T17:49:30.399-05:002013-09-13T17:49:30.399-05:00There are days that I don't want to be autisti...There are days that I don't want to be autistic. Being smart is a good thing, but no one understands me when I use excessively long words like "ephemeral" or "animosity" in an everyday conversation. Anonymoushttps://www.blogger.com/profile/10616282351291824392noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-44460362555300834172013-09-13T13:16:55.394-05:002013-09-13T13:16:55.394-05:00Ha ha! We are "soul sisters", Nellie, t...Ha ha! We are "soul sisters", Nellie, that is for sure -- which of course would make our boys cousins! lol Someday I'll get to NY and meet you!Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-5874358564270177552013-09-13T08:39:09.242-05:002013-09-13T08:39:09.242-05:00Preach it sister!!!!!! I wish you lived closer cuz...Preach it sister!!!!!! I wish you lived closer cuz we would have such great conversations. It is so suer healthy and good to voice your feelings. This is the real deal and many of us have felt this way. Thank you for putting it into words for us, i need to feature you on my blog pronto. I have never met you in person but love you to pieces right now!!!Nell Escalantehttps://www.blogger.com/profile/00615718815675872851noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-8145057723021120062013-09-11T17:45:30.157-05:002013-09-11T17:45:30.157-05:00Thank you so much Debbie, Susan and Angela for you...Thank you so much Debbie, Susan and Angela for your kind thoughts and ideas. I totally agree, Angela, that most people that push the "acceptance" attitude are thinking about higher functioning. I can't imagine anyone with all the sensory issues our boys have wanting to just accept that. Ah well ...Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-24274392504918493822013-09-11T07:30:38.102-05:002013-09-11T07:30:38.102-05:00Julie,
I'm with you on this one !!!! And to A...Julie,<br />I'm with you on this one !!!! And to Anonymous....to compare my son's autism to being gay is totally absurb. Someone gayness can be filled with joy and love and fun and all the things we all do everyday. Being severly autistic is in ways a prison for the child. Not being able to handle so much of the world and spending so much time upset and crying is not a way to live a life full of joy and love and fun. Not being able to express anything or have people understand what is wrong must be such a lonely feeling. I think when people complain about accepting autism they are thinking of the higher functioning people out there that just seem a little quirky. I'm all for "accepting" them. But, people forget that there is a whole other world that those with severe autsim live in. I would like anyone who wants to just "accept" it to come and live with my son for one week and see if they still think my son or his family should just "accept" it then??Anonymoushttps://www.blogger.com/profile/16519043089444100392noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-2833397401206803602013-09-11T06:12:01.509-05:002013-09-11T06:12:01.509-05:00Big hug to you. I do understand. I am concerned ...Big hug to you. I do understand. I am concerned about my children as well and their future but have to believe that God has taken care of them this far that He will continue to provide for them if my husband and I are not here. Another thing I am greatly concerned about is if the establishment will allow me to get medical help for my children as this new system comes more and more into play. I had to fight like a dog, beg, plead, reseach and still could not make them give one of my children a life saving surgery and this was under the old system. It is getting harder and harder to get the life giving/changing services these kids need. They pushed this surgery off as far as they could. He lost 20 pounds and was very weak by the time they decided to do it. Praise God he survived. But they made him wait 8 months for it. I see my children's lives often not valued as they should be by others and It makes me sad. If my daughter could not have to have so many very serious open heart surgeries I would be glad for healing to come to her. If my son could not be slowly loosing his ability to protect his airway and actually move his own body and walk...I would be so happy for him. If my children diagnosed with autism all of a sudden were able to have a "normal" future and get married, hold a job and have children...I would be over joyed for the easier path that would be, then what lays ahead for them. I love them all dearly. No one can tell me I would want a more "typical" child as we have chosen these children and my husband and I love our children enough and just the way they are, to have committed to adopt them and care for them as long as we are alive. And every parent I have met...EVERY...parent I have met at all the hospitals and therapy places over the years love their children enough to make that same commitment. Each one is fighting tooth and nail for those kids rights. To get them the equipment and therapy they need to bring them to their fullest potential. It is hugs and kisses and strong forever commitment. Just like I see in you Julie. You and your husband are strong. You love your boys enough to share about them in your blog. You share the good the bad and the ugly because that is reality. But love oozes off the pages. As I see a picture of Alan laying back on you relaxing and hear of his days I see a mother and fathers love and commitment. When I see you advocating for a job for Joe...a specific job that you think he can do well at and have some enjoyment doing...I see you wanting him to be the best he can be. Hugs again to you and your family. Keep doing what your doing. God see every part of your heart and there is no doubt you love your boys. Anonymoushttps://www.blogger.com/profile/06941712767626451024noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-14821786845363226442013-09-10T17:29:54.411-05:002013-09-10T17:29:54.411-05:00"Anonymous" doesn't know you very we..."Anonymous" doesn't know you very well and it shows! Enough said.<br /><br /> Debbie G.noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-20222981023546326382013-09-10T12:10:29.016-05:002013-09-10T12:10:29.016-05:00Candles are a great analogy!! To be perfectly hon...Candles are a great analogy!! To be perfectly honest the grandparents are not always very patient with my younger son, but they do try. It is just so much harder when you have an impulsive, 170# guy who can easily flatten one grandma and probably knock all the other grandparents over. They are just already vulnerable at their ages that exposure to Mr. Gusto isn't a good thing. :-(Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-81760318167252551912013-09-10T11:35:47.943-05:002013-09-10T11:35:47.943-05:00I can totally understand your hating the autism. W...I can totally understand your hating the autism. While Willie does not lash out, he constantly 'talks' about the same few things 20 - 40 times a day, he will interrupt people, he will grab other people, even perfect strangers, when he wants to 'say' something. He is non-verbal but uses some sign or communication device. I too worry about him when he gets older and my husband and I are not around; I can't guarantee my other 2 boys will be able to or have wives that will want to help clean him/help him with his personal hygiene. What I would give to get into his head and see how he processes information and how he thinks, how he sees the world, how I can make him understand things better. It's like living in the dark with candles that will not stay on, some will not light up. It is hard to see grandparents that have a difficult time with the kids - I'm sure it breaks their heart the relationship can't be the same as others. Our parents get less patient with Will as they get older. Love the short loving moments you get - the hugs, the head on the shoulder, the blowing of kisses. Thank God one of the candles is lit!!!Anonymoushttps://www.blogger.com/profile/02770463959754490054noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-47316786202316707662013-09-10T10:52:29.306-05:002013-09-10T10:52:29.306-05:00I am always inherently skeptical when someone hide...I am always inherently skeptical when someone hides behind "anonymous" when commenting on a blog but since I allow them, I am going to pretend we have an established report and that you actually give a shit about me. Yes, I did say the autism is wrecking my life. But I also think it is wrecking theirs. My younger son LOVES going to visit his grandparents, but because he climbs on the chair lift at one house and insists on going to a play ground at the other no matter what the weather we always have to bring him home kicking and screaming.<br /><br />When I was growing up, I heard multiple times from my mom that I was "supposed" to be a boy. She had two girls and then a boy and as the youngest, I was supposed to round out the family. Yes, I could have internalized it as she doesn't love me because I'm a girl, but she still showed me that she loved me in her actions. I happen to believe that actions speak louder than words ... or even shrieks.<br /><br />As for your hypothesis, I didn't say I would do ANYTHING to cure it. Any possible side effects would definitely have to be taken into consideration. That said, to a kid that is looking at an institution because I will not be able to care for him in 20 years, I think a cure looks pretty appealing. Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-4441984334381186002013-09-10T10:42:52.778-05:002013-09-10T10:42:52.778-05:00Thanks, Mary. I agree.Thanks, Mary. I agree.Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-48103522383206635652013-09-10T10:41:09.288-05:002013-09-10T10:41:09.288-05:00Thanks, Kerri!Thanks, Kerri!Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-77381242704141547412013-09-10T10:35:03.804-05:002013-09-10T10:35:03.804-05:00There's the little matter that your sons canno...There's the little matter that your sons cannot be separated from their autism. The kid and the autism are one and the same.<br /><br />And there's the little matter that when you say you don't want the autism that you hate the autism that the autism is wrecking YOUR life, there's an excellent chance that what your boys hear is that you do want THEM (because they ARE their autism). That what you really, truly want is a a completely DIFFERENT kid, a non-autistic one.<br /><br />(A little hypothetical: Pretend you are a devout, Evangelical Christian and it turns out that your kid is gay. Imagine telling the kid that you love him, but hate the "gayness". That you would do anything possible to "cure" his "gayness". Do you think your son would feel loved and accepted by you? Or would he feel that, well, you don't love him and want a different, 100% heterosexual kid instead).Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-31090561018094550342013-09-10T10:01:20.999-05:002013-09-10T10:01:20.999-05:00I wish I could hug you right now, even though we a...I wish I could hug you right now, even though we are strangers. I echo these thoughts, these harrowing feelings, that are dripping with the guilt and shame that society pushes on us, that we push on ourselves for simply feeling them.Mary, Mary Quite Contraryhttps://www.blogger.com/profile/12750131184650459570noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-47872655380185767492013-09-10T09:54:43.998-05:002013-09-10T09:54:43.998-05:00Wow. I commend your honesty. I seriously admire yo...Wow. I commend your honesty. I seriously admire you going THERE that place no one wants to admit. And while you might get some hate, I think you should be admired for how much you love your boys. Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.com