WTF just happened

Gavin's arrived home and Lizze and I were talking to him about his treatment of the hospital staff.  He basically told me that Mommy made a big deal out of nothing.  We informed him that he lost his choice for dinner and would be having oatmeal.  He was okay with that.  Lizze, while talking to me afterwards said that he probably didn't care about the oatmeal because he had pizza for lunch.  I responded to Lizze by saying, maybe he won't go to Grandma's this weekend.  Mind you,  I was talking to Lizze and not to Gavin.  In fact it was more like I was thinking out loud.  Apparently, Gavin overheard me and launched into a huge tantrum. I managed to get him into his room and he unleashed all…

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It’s a bad news, bad news kinda day

Gavin's infusion took almost 6 hours today. Apparently, they are having to do something different now and it's taking significantly more time.  Gavin's heart rate has been elevated all day long.  This is not a result of the infusion because this is not typical for when he's being infused.  While we're on that topic, I spoken with the Cleveland Clinic about Gavin's erratic heart rate as of late. His main doctor was out of town and no one wants to stick their fingers in the pie because he is far to complicated. We have to watch him like a hawk this weekend and document anything that happens and then I should hear from the next week. I suppose I would have liked more definitive answers but I'm comfortable with this…

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Does your child repeat themselves?

Do any of you deal with repetitive behavior? For example, does you child with #Autism repeat themselves over and over again? My kids repeat themselves over and over and over again.  I don't know if they even realize they are doing this but holy crap does it ware me down. I try never to give my kids what they want, simply because that are melting down or repeating themselves or asking the same question, over and over again. However, let me tell you,  repetitive behavior slowly but steadily wares you down.  At least it does for me. There are times that I would be willing to give them anything they wanted, simply to make the questions stop.   How do you cope with the repetitive behavior and what are your…

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Breaking me down

Emmett has been screaming for most of the morning.  I don't know what's going on with him. This is an ear piercing, blood curdling scream that could literally be used to break people being interrogated at Guantanamo Bay.  If the screaming didn't do it than Emmett could just simply employ his penchant for repeating the exact same question, over and over and over and over again. I don't think it's his diet as this trend began prior to reintroducing milk, egg and lactose. I do think, in fact I know, that his screaming and repeated questions are going to have me driving off a short bridge with a fast car.  I'm trying to preserve my sanity so that I don't spend it all in one place. Having said that,  I…

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Special needs parenting and knowing what behavior is what

Something that I struggle with on a daily basis has to do with knowing the difference between their special needs and normal, age appropriate behavior. In my family, this is one of those blurry lined,  very grey areas. This is especially frustrating, when it comes to Gavin and Emmett. They both have behaviors that blur the lines between normal,  age appropriate behavior and behavior that is inherent to there unique special needs.  I thought for today's #Autism Discussion,  we could talk about how to determine the difference between these behavioral types. How do you determine what behavior is what? This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism…

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Part RAD, Part Normal Preteen Defiance

Life would be so much easier if Gavin would listen instead of challenging everything we tell him. Much of this is related to reactive attachment disorder.  Having said that, there is also a part of this that is probably normal, almost teenage defiance. The problem is that it's really hard to know where one ends and the other begins.  This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store

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The IVIG Infusion

Instead of going to school tomorrow, Gavin will be heading up to Akron Children's Hospital.  He will be receiving his monthly antibody infusion, to treat his primary immunodeficiency. I haven't written much about that lately and thought that perhaps some of you were unaware that Gavin receives IVIG every month. I think he's quickly approaching the 2 year anniversary of his first infusion. He will need these for the rest of his life, barring some break through in medical science. He typically does pretty well with these infusions and his body seems to tolerate the foreign antibodies pretty well. I wish this wasn't necessary but unfortunately, it is. Hopefully, tomorrow will be another relatively pain free experience for him. Fingers crossed.  :-) This was posted via WordPress for Android, courtesy…

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We survived yet another tantrum

Gavin had a huge tantrum, shortly after arriving home from school today.  He lost his choice for dinner tonight because we caught him lying to us again. The tantrum began in the dining room and eventually was moved upstairs and into his bedroom.. This was probably the most aggressive to date however, it was short lived. I flat out told him that I knew he was doing this on purpose and that was evident by the many times he stopped to check the time or his heart rate. I told him that if he makes contact with anything other than his mattress or screamed into anything other than his pillow,  he would be having oatmeal for breakfast in the morning. No sooner did I say that,  he stopped, dead in…

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